The treatment approach/information gathering technique I describe below is highly unconventional, but the discoveries it led to were invaluable. I do not recommend that anyone try what I’ve done. If you absolutely have to, only do so under the guidance of a medical professional and a dietician.
Two years ago I wrote about the “extreme migraine diet” I was embarking on, which eliminated tyramine and tannins. Given the increasingly drastic dietary changes I’ve undertaken in the last nine months, what I thought of as extreme two years ago now looks like a delicious smorgasbord.
Last I told you, I was trying to reintroduce foods to correct the malnutrition caused by an unwise elimination diet. Everything I tried, even the most benign foods, triggered migraines. So I stopped eating.
My Last Couple Months: Tolerex, Food Reintroduction, Migraine Discoveries
Under the guidance of a dietician, I consumed nothing but water and an elemental formula called Tolerex for two weeks, beginning the weekend before Thanksgiving. (Elemental formulas are used in feeding tubes. Tolerex is a basic formula that’s well-tolerated by many people and contains complete basic nutrition, but is only a sustainable diet for people with GI disorders that inhibit processing certain nutrients. Its flavor is mostly neutral unless I have a migraine, then the taste and texture nearly make me gag. Also, migraine or not, if the Tolerex is not at the exact right temperature, it tastes like the smell of wet dog.)
The first week on only Tolerex, I still had constant head pain, but had only two migraines, both of which had obvious triggers (weather for one, massage for the other). Let me repeat that, I, the woman who has had one migraine run into another every day for at least a decade, had just TWO distinct migraines in a single week. Fatigue? Gone. Brain fog? Gone. If I believed in miracles, this would qualify as one.
After two weeks of Tolerex, I began reintroducing food. Once again, everything triggered a migraine. A quarter cup of red lentils, a quarter of a matzo, five Brussels sprouts, oat bran, a quarter cup of brown lentils, a quarter cup of juiced beet greens…. Frustrating for sure, but I also learned a ton about my migraines in that period.
- I know what it feels like to not have a migraine. (How sad it is that I had such severe, daily migraines for so long that I had forgotten what it was like to not have one.)
- I know what it feels like to go through the four distinct stages of a migraine attack.
- I identified three different types of migraine onset: one builds over a few hours, slowly adding new symptoms as it intensifies; one is immediate with all the symptoms all at once; one starts with killer pain, then adds brain fog and fatigue.
- Tooth sensitivity is my most consistent prodrome symptom and it’s very reliable — that’s partly because 90% of the time it’s the earliest symptom I have and partly because my teeth are only sensitive during a migraine.
- Triptans work for me. They’ve always been hit or miss — usually miss — because identifying when a migraine was coming on was so difficult that I couldn’t take triptans early enough for them to be effective. Now I take a triptan as soon as I notice symptoms and it’s like a freeze frame: the symptoms stop right where they are and stay that way for anywhere from a few hours to the rest of the day.
- I’ve confirmed that the brain fog and fatigue are definitely tied to migraines. I’d long suspected that, but sometimes wondered if a different, undiagnosed illness was really the culprit. Now I’m 100% sure that my brain fog and fatigue are due to migraine.
These are all great discoveries, but there’s still the glaring issue of food triggering migraines. It’s not just certain foods that are the issue, but the very act of eating nearly anything sets a migraine in motion. At least I think I’ve figured out why and it may be the most exciting discovery I’ve ever made.
Histamine & a Bit About Mast Cells
It all comes down to histamine. Over the last couple of years, medication and diet have established that histamine is a major migraine trigger for me. Clinical evidence as far back as the early 80s supports this notion, with research showing migraineurs have increased levels of histamine in their blood and in studying the role of antihistamines in migraine prevention. More recently, the role of mast cell degranulation (which releases histamine, among other things) in triggering migraines has come to light and is a topic of increasing research interest. (You can learn more about all this in Mast Cell Degranulation Activates a Pain Pathway Underlying Migraine Headache or, the more accessible Hunting for Cells That Trigger Migraine from the National Headache Foundation’s newsletter.)
How is this connected to eating? Certain foods contain histamine and others are considered histamine liberators. Furthermore, histamine is released as part of the digestion process whenever anyone eats anything. And this, I believe, is the crux of the problem for me. This normal histamine release is somehow too much for body and it sets a migraine in motion.
Fortunately, there are some ways to work around this problem. I can avoid all foods that contain histamine or are histamine liberators, juicing all my fruits and vegetables so they are easy to digest (this is a hypothesis I’m in the process of testing), and take a supplement called DAO before eating (more on that in a minute). I can also take medications that are considered mast cell stabilizers. There are a variety of possible medications, some of which are prescribed for migraine, like amitriptyline (Elavil), prochlorperazine (Compazine), and promethazine (Phenergan). If none of those work, there’s another long list of possible medications and even some dietary supplements that are considered mast cell stabilizers.
Diamine Oxidase (DAO)
Of all these possibilities, taking a DAO, diamine oxidase, supplement is the most promising right now. DAO is an enzyme that processes the histamine that’s released as part of digestion. All humans have DAO, but some people produce insufficient amounts. One researcher claims that DAO deficiency is common migraineurs. My genetic testing indicates that I’m likely one of those who do not produce enough DAO.
By taking the supplement, which is made from pigs’ DAO, before I eat, I’m able to eat more foods without getting a migraine. A study presented at the World Congress of Neurology last September examined the use of DAO as a migraine preventive. The main finding was that DAO could shorten the duration of migraine attacks, but there was some indication that it could also reduce the frequency of migraines, though intensity appeared unchanged. Participants who received DAO (rather than the placebo) significantly reduced their use of triptans. It was a small study and early research, but is definitely intriguing.
Some people may be able to take DAO and eat whatever they want without adverse effects. It doesn’t look like I’ll be one of them. I’m still sorting out exactly what foods I can eat without triggering a migraine when I take DAO. I will likely still have to avoid foods that contain or liberate histamine, though some people with histamine issues are able to reintroduce “forbidden” foods after avoiding them for a while.
Unfortunately, as I test more foods, the migraine triggers get murkier. Sometimes I even wonder if DAO itself is a trigger (although, the “experiments” I’ve done the last two days indicate that the trigger may actually be a different food chemical that’s unrelated to histamine. I clearly still have a lot to sort out.).
More on Mast Cells & What’s Ahead
Those are the questions I’m juggling in the short-term. In the long-term, I’m exploring the possibility that I have a mast cell disorder that underlies my migraine frequency. As I mentioned above, recent research indicates that mast cells play a role in migraine. Mast cells are normal, healthy cells that everyone has. They defend against pathogens and heal wounds, but they also are intimately involved in allergies and anaphylaxis. One of their functions is to release histamine when the body needs it. Some people have too many mast cells (mastocytocis), while others seem to have “twitchy” mast cells that degranulate too readily. Either case causes an excessive histamine release in the body.
Mast cells are yet another medical area in which there isn’t a lot of research (of course I wouldn’t wind up with a well-understood disorder). Because mast cells are such a major player in allergy and immunology, that’s what most of the research focuses on. The good news is that I have an appointment with an Arizona-based mast cell specialist at the end of the month. The bad news is I have to convince him to take my case seriously even though I don’t exhibit typical allergy-like symptoms. He’ll either find me an interesting anomaly or will think I’m wasting his time.
Next week, I see my headache specialist, an appointment I’m both eager and nervous about. He’s shown nothing but respect for me and has always believed and supported me in the past. Still, telling a renowned migraine researcher that my primary trigger is eating is intimidating. This may be the time he laughs me out of the office. Or he could go to bat for me with the mast cell specialist or could connect me with migraine researchers interested in histamine and mast cells.
Phew! I’m Almost Finished
Thanks for sticking with me through this incredibly long post. Every time I find a treatment that seems promising for me personally, I first wonder if it will help my niece who has chronic migraine, then I wonder if it will help any readers of The Daily Headache. I want very much for the connections and discoveries I’ve just told you about to help at least one other person sort out their migraine mysteries. What I’ve learned in the last couple years (and especially the last couple months) really feels like a step toward that. I’ll keep you posted.
P.S. I’m not sure if I’ve turned a corner with the dizziness that’s kept me off the computer for the last six weeks or if today is a fluke. It’s much less noticable when my medication can be digested along with solid food, rather than Tolerex alone, but I’m still not eating solid foods every day. I hope I’m back – I’ve missed writing so much.
P.P.S. Please don’t be worried about my current nutrition. I had my September blood work re-done a month after starting Tolerex and it’s back to being perfect. Tolerex is not a long-term solution, but it’s way, way more nutritious that what I’ve eaten in most of the last year.
- The Post I Never Thought I’d Get to Write (Jan. 23, 2014)
- Histamine Intolerance & DAO: Answers to Your Questions (Jan. 25, 2014)
- “Histamine Block” Does NOT Block Histamine! (Feb. 24, 2014)
- Mast Cell Disorders, DAO & Food Trigger Testing (Mar. 11, 2014)
- Diamine Oxidase (DAO) is Why I’m Doing Better (May 6, 2014)
- Testing if Your DAO Level is Low (May 12, 2014)
134 thoughts on “Being a Human Guinea Pig and Digging into Clinical Research: Food and Histamine, Mast Cells and Migraine”
Thank you for your work Kerri, I also suffer from
Migraine for about 4 years now. Couldn’t figure out what cause or triggers it. I was put on amitriptyline to prevent it. The amitriptyline did help, I was able to live my life again. So about 6 months ago, I decided to wean myself off of the amitriptyline. It was a success. But about a week after I stop taking the amitriptyline, I would suffer from withdrawal symptoms. I was having nausea and itching. So started taking Zyrtec for the itching. Since then, I’ve been on Zyrtec for about 6 months for the itching. I went to see an allergist for the itching. I was diagnosed with dermatographism. It’s where your mast cast release too much histamine without an allergen that causes allergy symptoms. I stop taking the Zyrtec because I thought the itching was a withdrawal symptoms from the Zyrtec. Long story short, I started having head aches again. So I started looking into histamine causing migraine, and that’s where I found your blog. I think you’re on to something. Keep up the good work.
I now have enough information that coenzyme Q10 could be a of major importance, more than I thought in discouraging CSDs, used as a preventive.
There are two versions of this substance, discovered in 1940. Ubiquinone and ubiquinol. The ubiquinol version is somewhat unstable, and will eventually turn into ubiqinone. The two are “redox-pairs” one reduced or basic and the other oxidized. Coenzyme Q10 is vital to the workings of ATP, the substance by which all cells inc. neuronal ones are fed with energy.
Coenzyme Q10 is produced naturally in the human/animal body, and is to be found mainly stored in the muscles. As a person gets older, CoQ10 (ubiquinone) production falls and should be boosted with extra via food supplements. It is ‘lipophilic’, meaning fat-soluble. Ubiquinol is said to be hydrophilic. Because CoQ10 is lipophilic, it is best taken along with a fatty food such as butter, corn oil etc.
CoQ10 is also present in many meat-based foods, partic. beef/pork hearts and liver. It becomes somewhat degraded by cooking, but its food-based value shouldn’t be ignored.
The first thing I noticed after taking CoQ10 seriously was a positive reduction of fatigue. This also applied in the sexual area. There seemed to be some improvement in memory and general brain performance, but this observation is only subjective. It is said to improve Parkinson’s disease and be beneficial to heart performance. It should be partic. noted that taking statins will degrade the performance of coQ10. If this be the case, larger doses of coQ10 will be required. Around 60mg. daily in normal circumstances would be usual in an adult. No side effects have been noticed with coQ10 unless the dose is very high, say over 1gm. The side effect is all gastro., esp. the trots.
CoQ10 is not partic. expensive, I get 90 times 30mg. softgels for just over £10. Be careful with ubiqinol as it will turn to ubiqinone if it’s been on the shelf a long time, so you won’t be getting your money’s-worth.
George Dodgeson, a migraine sufferer, has also done research on himself to control various migraine phenomen, including mast cell stability and cortical spreading. You can find his letters on the human guinea pig site which I think this is. As a retired physician with weekly migraines for the last 50 years, I would like to help you on your journey back to health. Just one thing though. As you mature, Migraine changes in many ways, sometimes for the better in terms of incidence, severity and response to lifestyle changes you will make to promote your overall wellness. Best, Deb.
Hello, I am a physician and have been having great difficulty with extreme postprandial symptoms. They do include migrainous auras and occasionally full blown migraines, but also other stuff like abdominal pain,flushing, ringing in my ears, vertigo, feeling like I am going to faint, nausea, sometimes vomitting, etc. I have been trying to figure this out on my own as my colleagues don’t really seem to believe me how bad this is. Long story short, I have gotten some excellent relief with a elemental feeding formula called vivonex plus. I was also increasing improved with oral cromolyn (mast cell stabilizer), ketotifen, (mast cell stabilizer and antihistamine) , reactine (antihistamine), feverfew (herb), and I am embarking on monteleukast (lekotriene antagonist usually used for asthma). I have also improved short term using antibiotics for supposed SIBO but it always returns within a few weeks. I will be seeing Dr. Afrin the mast cell disorder specialist in Minneapolis soon. I have not read all of the posts as there are many, but it is soooo comforting to know that there are other people with symptoms similar to mine. My symptoms are so extreme I had to stop working as a doctor two years ago. My disability paid for a while but eventually dropped me due to disbelief and lukewarm letters from my doctors. The frustration of not being believed makes it worse. Just needed to connect with others of similar ilk.
Thanks you for your website.
Hello to the physician above (and to Kerri for this outstanding series of posts, and to all the helpful contributors),
Thanks, firstly, for being brave, as a physician, to admit how often one is not listened to by medics (for so many reasons);
Secondly, a caveat re. Montelukast: it is one of several drugs (steroids like Budesonide included) that can cause Tinnitus (one of those “rare” side-effects that only matters when you suddenly find that you are in that ‘rare’ category and the statistics have a name and a face).
Thirdly, I used to have bad migraines during puberty and for some years after. For me, yes, histamine intolerance was definitely a ‘ thing’: hay fever for a few years, starting, as did the migraines, around puberty; asthma later on, now “grown out of” (but also thx. to removing all carpets (away with dust mite poo off-gassing!) and living in dry Alberta, Canada, instead of soggy England), and anti-histamines definitely helped to a degree.
Avoiding histamine-rich foods, had I been better aware of them, would have helped even more – yeast foods such as under-cooked break, sparkling wine, and Marmite (vegemite in Australia), aged cheeses (esp. old cheddar), and some chocolates – especially if taken in combination or eaten close together, as it is CUMULATIVE histamine that seems to tip the balance / cause the ‘bucket’ to overflow).
But what made the biggest difference was HYDRATION – including ELECTROLYTES.
This was, of course, connected with FATIGUE due, in the early years, simply to the massive bodily changes brought about by puberty (yes, hormones of course play a major role), and the fact that they coincided with the time when school became more demanding in every way (academically, socially); it was also connected with fairly chronic HYPOGLYCAEMIA – again blameable (mostly) on school, puberty, growth spurts, and too long gaps between meals when one was desperately hungry with nothing to snack on.
So what I found worked best of all (other than ergotamine-based medication to abort the migraine cycle when I had no choice), was to DRINK plenty of water as soon as I sensed the beginnings of a migraine headache. Now I would know to have added a little good quality salt (sodium), lemon juice (potassium), and either a little dextrose (glucose), or (preferably) a little Blackstrap Molasses (pref. organic, of course), as this is chock-full of minerals.
Getting my BLOOD PRESSURE back up first of all by drinking made a HUGE difference. The next thing I learned to do was to EAT a small amount of SLOW-BURNING carbohydrate food before the nausea cycle became too intense. A small piece (even a couple of bites) of good bread, or some porridge (oatmeal), left-over potato – something that would produce the needed glucose factor, but not in a rush (straight sugar or chocolate was bad; something like almonds might work better for those not intolerant of nuts).
I also had to get away from LIGHT and into a dark room: my migraines were often triggered when I was a day or two away from my period, and when there was low light, as in spring and autumn, on a windy day when rapidly-moving branches or trees caused a ‘strobe-like’ effect which triggered the aura). And I needed to lie down (I am not afraid of blood – Dad was a GP -, but I’ve always needed to lie down for ‘jabs’ (injections) because of lowish blood pressure, which is also connected).
Interestingly enough, I had hyperemesis gravidarum (mega bad morning sickness 24/7, for the lay person) with 4 out of 5 pregnancies (am now 60 and v. happily post-menopausal), and learned, after two periods of being on I.V. rehydration in hospital with our first child, to EAT and DRINK small amounts, then LIE DOWN in a DARK ROOM BEFORE symptoms went out of control (that is, after the first early morning vomit, which was never preventable – though also a symptom of extreme hunger, being of course after a nighttime fast’).
My original mistake had been to associate the nausea (which was actually from mineral, etc, depletion in those demanding early stages of pregnancy) – with “illness” and therefore NOT eat. WRONG! So with our second child, I learned to EAT. I found that needed a full meal at breakfast (bacon and eggs), and again at about 11.00 a.m. (e.g., leftover stew from the night before), and again at lunch, and again mid-afternoon, during the first trimester. Once I hit about 17 weeks, everything had calmed down.
I have a naturally high / fast metabolism and tend to be thin rather than overweight. I’m sure this is also connected. (Our family also has several members with features of Marfan syndrome, as does my husband’s, which comes under the general heading of Collagen Disorders (Ehler-Danlos syndrome is an extreme version) and is related to ZINC DEFICIENCY. The latter is, interestingly, also a symptom of alcoholism; we don’t have it in recent generations on my side of the family (though it is three generations back on my husband’s), but since alcohol damages sperm, it is very possible that the damage was done further back and has been passed down genetically – so yes, genetic testing can provide helpful clues.)
Funnily enough, I did not have hyperemesis with our second child (who is genetically least like the others), although I did, in the last month of pregnancy, have a major HISTAMINE reaction and became hugely itchy. Instead of thinking of taking e.g., Phenergan at a low dose, I ended up speeding up my labour by walking up and down a hill three times in a row and going swimming. Our dear son was born 3 weeks early, though otherwise in fine fettle – and the itching instantly disappeared (I had been worried, due to zero sleep from the itching, that I would not have the strength to give birth, so had to make that drastic decision; our son has since managed to get Masters degree, so he survived being forcibly premature by few weeks!)
There are other pieces of the puzzle – including the need for adding supplemental Vitamins C and D3 (as well as a good B complex) in order for DAO to work optimally, but I hope, for migraine sufferers, that the above may help piece a few more pieces together for some of you out there. I’ve been researching for the past 4 years non-stop (leading to a Candida infection from sitting too long at the computer, for which good old Apple Cider Vinegar (dilute) – a known antihistamine (cf. wine vinegar, esp. Balsamic, which is histamine-rich) did the trick) because of our second son’s chronic Infectious Colitis. This has been a long story of misdiagnoses and medical bunglings (sadly all too common), and we are right now grappling with the 5th recurrence of C. diff because of refusal to LISTEN to our pleas for either Fidaxomicin or FMT as FIRST-LINE, not 7th-line, therapy (what would the “pt.” or the pt.’s mother know about anything?!).
However, the HISTAMINE connection has suddenly jumped out at me this past week, triggered (ha!) by our son’s sudden severe reaction to Spinach juice and, a couple of months ago, to PORK. Both of these are high HISTAMINE foods, and although he already knew about the histamine issue (and tried e.g., to avoid histamine-producing bacteria in probiotics), and was already avoiding histamine-rich foods (he barely ever ate pork, ironically), he did not know that spinach was a culprit. He has been suffering from rhinosinusitis chronically for the past few months, and anti-histamines have helped somewhat, but are not the answer (they cause problems by blocking certain receptors (H1 and H2), causing the others (H3 and H4) to become ‘flooded’, resulting in overload, I believe (this is all new to me too).
One huge emotional problem with our son’s previous misdiagnoses – he was told that whatever had caused his acute dysentery back in May 2012 could not possibly still be ‘active’ 7 months later, and therefore his continuing, unchanged symptoms must be “auto-immune” – has been the association of the ‘auto-immune’ label with misdiagnosis, wilful misunderstanding, and refusal to LISTEN, on the part of doctors (even to the extent of some of them actually lying on reports). Since we were convinced (and later proven right) that his “Indeterminate Colitis” / “IBD” / “Crohn’s” / “Ulcerative Colitis” (the labels changed from one month to the next, depending on dr. preferences) was, in fact, INFECTIOUS Colitis, this ‘auto-immune’ / ‘idiopathic’ label stung every time it was (mis-)applied.
However, although we were right as to infectious aetiology (the culprits turned out to be, via culture of peri-appendiceal faecal fluid 3.5 years later by a thorough gastro who LISTENED, aeromonas hydrophila and aeromonas veronii, biovar sobria – a Classic (and vicious) pairing of toxin-producing bacteria that will wreck the colon (esp. caecum + ascending colon, but can cause pan-colitis) as effectively as C. diff) -, the fact that our son did not recover was not only due to his finally receiving antibiotics (I.V. Ceftriaxone + Gentamycin, oral Bactrim) very late in the day (and their causing C. diff to erupt in December 2015, with which we are still grappling after yet more bungling), but was also doubtless exacerbated by his underlying HISTAMINE sensitivity / intolerance. (It was also NOT helped by his picking up a Strongyloides stercoralis helminth infection from walking barefoot everywhere in the Australian town in which he is living – a lesson learned the hard way, and which has led to secondary vasculitis with has NOT helped the whole gut hyperpermeability (‘leaky gut’) factor at all. ARGH!)
So coming across well-researched and well-explained posts such as this, with equally helpful and enlightening comments threads (THANK YOU, everybody!) and realizing that addressing our son’s probable DAO insufficiency (as well as his avoiding spinach!), although it will not lick C. diff (you’ll be glad to hear that he is about to begin FMT for that) or any other pathogenic infection, may well at the very least help to reduce on important avenue of instability and help him towards the road to eventual recovery.
As with everyone else who has posted here, the path out of the proverbial woods is very rarely straightforward; however, with PERSEVERANCE and a lot of prayer support, I do believe with all my heart that each and EVERY one of us here, or our suffering loved ones, will eventually get to the ‘edge of the woods’ and out into a true ‘green pasture’.
I think the most painful part of the journey is getting doctors to realize the vital importance of LISTENING, not only for optimal ‘pt.’ outcome (!), but also for their own good and that of their profession. It is a long, hard road, but once on it (even though few of us chose to ‘sign up’ for it), we have to remind ourselves that it is a privilege to seek the truth, and to help ‘bear one anothers’ burdens’.
For my part, thanks to all of your for helping me bear our son’s burden, and God bless.
No further CSD/aura for me since re-instatement of co-enzyme Q10 as of above date.
I’ve had another small inspiration as what is going on with this disease.
It seems to me that all brains of larger animals are susceptical to CSDs. It is so easy for the scientists to set one off. To me the brain’s neuronal structure is finely balanced with its positive AND negative feedback systems, together with delay systems in the feedback paths. These delay systems are chains of neurones just like all the rest. The time delay (time constant) could be variable and crucial.
So the system of neurone structures are finely balanced close to the critical point of runaway instability. This seems to be a necessity if the brain is to work fast and to forecast the immediate future to save the animal from becoming a meal for another. If this critical point is passed, we have a runaway CSD situation which ends up in the brain’s trigeminal system producing apparent pain in the meninges due to vascular disruption, i.e. the classic migraine headache. Tryptan drugs help to stabilize the vascular upset in the trigeminal, reducing the headache.
Here is the inspiration: Some substances consumed push the brain’s neuronal sytem over the critical point into an unstable, runaway condition, a CSD. These substances are typically — cheese with its tyramine content, MSG, monosodium glutamate, aspartame, alcohol, and a big load of others probably unique to the sufferer. There is also no doubt that hormones are also a csd-driving substance. The girls know all about this one around the mentsrual period. I know defo. that the progesterone in the contraceptive pill does indeed set off CSDs when there were no migraine auras/CSDs or headaches EVER before the progesterone was taken.
HOWEVER, there are stabilizing substances to take that have the reverse effect on the neuronal critical point, and most importantly, each stabilizing substance taken will have its own stabilizing effect separate from any other. So to prevent the CSDs which lead on to trigeminal disruption and consequent headaches, you may well find that MORE THAN ONE STABILIZING SUBSTANCE is the way to go. I personally find that heavy doses of these stabilizing susstances are not needed. And remember my previous advice, just because you don’t get the visible “aura” prior to a headache, doesn’t mean you are not having a CSD. It just means you don’t know about it.
It’s importand to realize that if you can stop the CSDs, you will not get the resulting headache.
Example: My stabilizing substances are–
Half a 10mg. antihistamine cetirizine tablet before bed, a cheap OTC drug.
A 30mg. capsule coenzyme Q10. Quite cheap. Food supplement.
Half a standard tablet, vit. B complex. Food supplement.
It could be that you will have to find your own stabilizing substances to take, because no two brains are alike, and I wish you luck!
Oh yes, there was a CSD/aura after three days without the co-enzyme Q10. This was at 6am in bed and was faily mild. The co-enzyme Q10 had been reinstated immediately.
Reporting in to mention that I’ve now managed to get my daughter to take a half-tablet of vit. B complex each day (despite some resistance). She experiences auras/CSDs plus headache particularly when hormones are active around the monthly.
For myself I’m coming up to the eighth’s month free from aura/CSDs. I’ve run out of co-enzyme Q10, so I’ll se what happens without it, and report in if there is a CSD.
HOORAY AND HALLELUJAH!
The six-month test is up, I have had NO CSDs since the last one. As a comparison, my daughter has returned to “normal” for her, a few CSD/migraines per month instead of the few per week she was getting fairly recently. This appears to be the result of folic acid plus vitamin D.
I can now (I think!) have some confidence in my treatment by food additives (as above in last post) plus the antihistamine certirizine hydrochloride which is cheap and easily available OTC. It confirms my belief that CSD/migraines are probably caused by something we are NOT consuming, rather than something we ARE consuming, coupled with excessive sensitivity in the brain neuronal system in migraineurs. Also I think the three-pronged method, (vit. B complex, co-enzyme Q10, cetirizine hydrochloride) as above in last posting has value by reducing the sensitivity of brain neuronal systems in three different ways. It could be that the negative feedback in the neuronal structure is more effective, and faster when these food additives are consumed every day, making the structure more stable. However I have no means of proving this definitely, I would need a large number of patients plus lots of time to make a proper clinical study.
If anything else turns up, or I get a CSD I will report in.
In order, these are the best preventives/prophylactics I’ve found so far for the CSDs., and it seems to getting well-proven over a long time period.
1) Vitamin “B” complex: Half a tablet per day.
2) Close second or tying: Antihistamine cetirizine hydrochloride: Half a 10mg tablet per day.
3) Co-enzyme Q10: One lozenge per day
4) Standard asprin: Half a 300mg. tablet per day.
45 For a female, folic acid plus vit. “D”.
If you are new to this migraine problem, the above could be your starter regime, and it seems to work for me. It will take a month or two before the above begins to work.
A note I should have added to the above:–
There is a definite “process” or procedure to a migraine headache that would appear to apply to ALL migraine events.
!) The brain’s neuronal system is too excitable, too unstable.
2) Something, almost anything, tips it over into full blown instabity, i.e a CSD. This is visually obvious when the CSD is in the visual cortex, but the CSD may be elsewhere, undetectable to the migraineur.
3) This CSD proceeds to the trigeminal nervous system of the brain over a period of approx. half-an-hour. This trigeminal reacts with disruption of the vascular pressure (vaso constriction/dilation). A serious headache is felt in the meninges, the brain covering, but there is nothing wrong with the meninges. The triptan drugs work by regularizing vasular pressure, but there is an absorbtion time lag if the triptan is a pill. Hence the IMMEDIATE use of a triptan is needed as early as poss.
4) And most importantly, STOPPING THE CSD. BEFORE IT STARTS is the route to take as a remedy to the migraine headache. This is achieved by normalizing the brain fluid (the cerebro-spinal fluid) as a matter of proper nutrition using basically food additives, although antihistamines have proved useful.
After all the research I’ve done in the past few years and reported on THIS website about auras, migraines, and allied symptoms, it’s struck me that we may be going about the whole aura/migraine problem in the wrong direction!
Point one: Most lay-persons nowadays think migraines are triggered by some kind of food such as cheese, chocolate, monosodium glutamate and so on. It could well be that the real cause isn’t what we ARE consuming, but what we are NOT consuming (that we should be).
Modern foods I think are not as good as the old foods, so long as old foods were clean and free from bacteria. The food triggers may well be simply “tipping us over the edge” into a CSD, due to excessive brain sensitivity or excitability caused by a LACK of stabilizing substances being consumed in food.
Point two: Most lay-persons think there could be a single drug that will “cure” the migraines, when it seems to me more likely that a combination of a small number of other drugs/vitamins/food additives/minerals will replace what is missing in our modern foods.
Point three: The “aura” is only called that because it’s VISIBLE in our visual field. The aura is in fact the visible confirmation that a CSD (cortical spreading depolarization) is going on. I’m pretty sure that CSDs can happen in other areas of the brain apart from the visual. In this case you would not normally know that a CSD is going on, except perhaps a strange “feeling” leads you to think a migraine headache is coming. CSDs can happen in any human, any animal, they are not special to migraineurs
Point four: I’m reminded of the old adage among those who keep tropical fish — “look after the water, and the fish will look after themselves”. I think this applies also to migraine sufferers. Your brain lives in cerebro-spinal fluid. which as it happens is about 98% water. I think if this fluid contains the right “substances” FOR YOU, any CSDs wil likely disappear.
Point four: I’m quite convinced that a CSD precedes a migraine headache, although a headache doesn’t follow of necessity.
Point five: With migraines and auras, what applies to one person does not of necessity apply to another. You have to find your own personal salvation, and it takes time and work. I think this is because of the sheer complexity of a brain. Because a brain grows into what it is, no two brains are alike, only approx. similar at best.
Point six: If you are a migraineur, there may not be a total and complete “cure” for the condition, only a means of reducing the frequency so that some sort of reasonable life may be lived.
I have nothing but utter sympathy for those who get several migraines a week, and it’s probably this feeling that makes me do all this typing!
I can now report four months clear of last episode of aura/CSD, and that last one appeared to be caused just once by omitting two days of vit. B complex and substituting folic acid plus vit D pills.
The folic acid plus vit D pills my daughter has been taking have proved a useful preventive, she is now back to where she was, only getting auras plus headache around the menstrual period. She is enthusiastically keeping up the folic acid, and it’s very cheap.
Pizotifen taken as a preventive/prophylactic by her was more of a problem, it didn’t work and caused dozy/drowsiness. However, the Triptan prescription proved useful as it almost completely aborts the headaches so long as it is taken immediately an aura started. I understand triptans work on the brain’s vascular system by normalizing the vasodilation of it.
I know oxygen perfusion analysers are available to the general public. These are little LED devices which clamp to a finger and use two LEDs, one visible red and another infra-red LED to assess haemoglobin O2 levels differentially as the infra-red light is affected by changes in O2 in the blood. This can be detected, analysed by a microprocessor and a %age of O2 level put on a readout. I don’t yet have one myself, but will get one asap. The natural homeostatic control of blood is by sensing the CO2, CARBON DIOXIDE level, not by sensing the O2 level. Therefore poor shallow breathing can happen naturally without your conscious knowledge.
With deep breathing excercises, it is required to expand the belly with your deep breathing, as the most O2 sensitive part is at the bottom of the lungs. It could well be argued that excercise is good for you mainly because you HAVE to breath deeply during said excercise. Therefore deep-breathing is a handy way of improving your vitals if you can’t get to the gym, are chained to an office desk etc.
A new (to me) possible cause and relief of aura/migraine attacks has come to light, so I’m passing it on here for what it’s worth.
After acquiring a wrist-cuff blood-pressure analyser as used at home by many patients having higher than normal blood pressure (hypertension), a very simple way of reducing the systolic or pulse-pressure has been discovered. No drugs, no cost, no inconvenience, so it should appeal to everyone.
Deep-breathing or slow-breathing is the trick.
After dozens of measurements, it always works. Systolic pressure is down by 10 to 15mm.
It seems to have something to do with “baroreflex sensitivity” and changes in autonomic balance. It is under neuronal control and the phrase “excitatory pathways” together with “homeostatic systems” I read triggered an alarm bell in my head. The over excitability of brain neurons in aura/migraine sufferers could be involved here in some way.
Please understand I’m putting this forward in an experimental sense, so…. will those interested try this one out and let us know if it has any effect. I can’t put myself as a test as I’ve not had an aura for some time. I need you to do it for me.
The above all make for interesting reading concerning the effect of pollutants such as NO2.
Regrettably, there is no known antidote for NO2 inhalation. However, NO2 easily dissolves in water, so a dampened face-mask such as worn by painters might be effective.
I have just been watching a program on BBC1 (Mon. 8:30 to 9:pm.–23/11/15) which concerns the emission of NO2 (nitrogen dioxide) from some diesel engines. The title of the program was
“The VW emission scandal”, in which an Opel/Vauxhall 1.6litre diesel people carrier could emit NO2 pollution way beyond and above the limit of 80mg for that vehicle. The tester commented that at motorway speeds and normally hot engine, the readings were off-scale altogether i.e. more than three times the limit.
Further discoveries were that NO2 can be excessively concentrated in big cities especially where it was “trapped” by tall buildings around heavily used streets like Oxford St. London where there were many diesel busses and taxis.
Now the program commented on the effects felt by a 16y/o girl on her lungs who had a lung disease called cystic fibrosis. Immediately something struck me —
Nitrogen dioxide, NO2 is a well known cause of CSD (cortical spreading depolarization) of neurone cells, otherwise called “the aura” preceding migraine headaches., INDEED, NO2 is deliberately used by scientists in experiments to actually set off CSDs on purpose. Also note your “auras” may not be noticeable to you if they are in so-called ‘silent’ areas of the brain, so even if you think you don’t have the “auras”, keep checking.
This is an appeal:
Does anyone have reliable data of migraine attacks being centred around such areas that could be polluted with NO2 from an excess of diesel vehicles?
If so, please post details on here, you may be doing many people, possibly millions, a great service (and that could be me…) If there can be a proven link, it’s conceivable that some substance could be developed to counteract the problem, thereby helping those millions of people around the world who suffer this unwelcome malevolent guest called a migraine.
There may already be such a pill that couteracts the effects of NO2, I don’t know, but I’m jolly-well going to find out.
…is a website discussing stimulation of the vagus nerve as a method of inhibiting CSD in about half an hour, and thusly the following migraine headache. It works immediately rather than the weeks that prophylactic substances take.
Direct copy and paste:–
“What we have established is that VNS^ reduces the hyper excitability of the brain by suppressing CSD and that VNS is much quicker at achieving this than traditional migraine prophylactic agents such as topiramate and valproic acid. We were also able to establish that VNS was effective in reducing CSD for at least three hours after only four minutes of treatment. Our findings have opened up exciting possibilities for further research”
*VNS=vagus nerve stimulation.
I am indeed trying co-enzyme Q10 as a preventive for my auras. It’s too early to tell as yet the effectivemess, but there are no side-effects from it with me. I have to bite the capsule of CoQ10 as they get stuck in my throat otherwise. The substance has no taste, and I spit out the empty capsule.
From “Wikepedia” —
Supplementation of CoQ10 has been found to have a beneficial effect on the condition of some sufferers of migraine. This is based on the theory that migraines are a mitochondrial disorder, and that mitochondrial dysfunction can be improved with CoQ10. The Canadian Headache Society guideline for migraine prophylaxis recommends, based on low-quality evidence, that 300 mg of CoQ10 be offered as a choice for prophylaxis.
It is claimed that CoQ10 facilitates the electron transport mechanism in the various cells of the body (which is heavily involved with the ion-pumps re-charging depolarized neurons and glial cells in the brain). So I see a possiblity that this CoQ10 could improve the speed of neuron negative feedback, thusly making homeostatic/stability better, and maybe aborting a CSD before it starts, and of course the nasty headache that follows.
As of this date I’ve had another aura/CSD event: This was somewhat different in that there was a “double” CSD, one following the other. The first was about half an hour, the second very brief at 10mins in length. Apart from this shortness, there were no memory or speech effects, no numb fingers or the chills, no headache, the aura/CSDs were entirely visual. There was no kind of “hangover”. I could find no “trigger” substance to cause these auras/CSDs. No unusual foods, except perhaps avocado pears.
If I feel the current treatment I’m using (vit. B complex + 5mg. cetirizine hydrochloride antihistamine + half a standard asprin at 150mg.) is not sufficiently effective, I intend to try co-enzyme Q10 as well. This should be useful for me anyhow as I’ve always had elevated blood pressure, and this CoQ10 is said to improve mitochondrial energy. It can be had in Leeds for around £8:50 per bottle.
So if you know something about CoQ10, please post!
Coincidentally and unf. just after I’d written the above, I had a CSD/aura attack. After all this time since the last one too… (Well over three months). This was a “short” one, about threequarter hour, visual disturbance and numbish fingers of left hand plus the “chills”, but no speech or memory disturbance, and as usual, no headache. There did not seem to be any “hangover” from the attack after it stopped.
This CSD followed a small change I made in my vitamin regime, i.e. the substitution on alternate days with a folic acid tablet for the usual daily half a vit. B complex tablet. This would suggest the vit. B is the one having an effect on my CSDs., although folic acid appears to be the one having an effect on my daughter’s CSD with migraines.
In the UK., folic acid may be had as a ‘pregnancy-assist’ food supplement with added vit. D from “Superdrug” at £3 per packet of 60 small pills on a one-a-day dose basis.
I can say that as of this date, I have had no auras/CSDs yet since 17/5/15.
There has been a side-effect of the food supplements I’ve been taking, which admittedly is completely subjective.
My memory seems to have improved over what it was before, in terms of things “popping into awareness” that I should remember. In computer terms this would be equivalent to a polling routine procedure, as most microprocessors and computers do anyhow, all the time.
This is a feature of data access rather than data retention. It suggests part of my neuronal activity is working better than it was after the three months or more I’ve been taking the vit. B complex with its folic acid. There have been claims I’ve seen on the ‘net that vit. B complex could slow down the rate of Altzheimer’s disease progression in the elderly, although positively proving this would be well-nigh impossible in a reasonably short space of time.
Come on now you folks out there, I seem to be the only one posting now. If you are trying the vit.B route do please report in with your findings. If you are trying some other route, report in anyway if you think it has an effect.
FYI for what it’s worth….
My daughter has been having persistent auras+headache of two to three per week since the new year. She has been on doctor with Pizotifen and Sumatriptan. The Pizotifen had to be discontinued due to very drowsy side effect. Pizotifen is a preventive.
She’s had an unrelated problem with her fingernails becoming loose, and the latest thing doctor has prescribed is folic acid.
It “appears” to have had an effect on the auras+headaches. The frequency is reduced to one quarter of what it was. This is factual if unscientific.
On my vit. B complex, I still have no auras.
So there you go.
Thank you Kerrie for that information — there seems to be a substance called AMY1 also linked to the possible treatment.
It’s now the end of July (and I’m another year older) and there have so far been no auras for me since 17th May. For info., I’m taking…
A half tablet of common vit. B complex,
A half tablet of cetirizine hydrochloride, the anti-histamine,
A half tablet of asprin which amounts to 150mg.,
and the usual drugs for elevated blood pressure.
My daughter is now getting around two aura+migraine headaches a week, she had to stop the Pizotifen as it was making her feel drugged all the time. So she now has a sumatryptan only for when the auramigraine starts. I don’t know how she remains cheerful.
If the current procedure draws a blank, I shall go on to investigate magnesium taurate which I understand is a food supplement as a aura/migraine preventive.
— is another approach in the same area; worth a look.
Another diagnostic principle concerning the causality of aura/migraines could be the complex multiple drug/remedy for what is a pretty complex neuronal balance problem. In other words, the only way out of this problem could be the action of more than one drug and/or vitamin used as a prophylactic-preventive.
I’m certain the best way of treating aura/migraines is the preventing way rather than treatment AFTER the headache has started. For example, to stop your car running away, you put the handbrake/service brake on BEFORE you get out of the car, it’s no good running after it when it’s on its way down the hill.
George, this article mentions gepants. I’m not sure about other countries, but their development has been halted in the US due to liver toxicity. Current (and promising) work here is on CGRP monoclonal antibodies. A gepant called telecagepant may one day be revisited as an acute treatment, but there’s no expectation that it will be used as a prophylactic. (I know you’re not in the US, but thought this information could help with your research.)
Those of you suffering from regular migraine headaches should look at this website:
A new drug associated with calcitonin-gene-related-peptide (CGRP) could be central to maintaining homeostasis/stability in the brain. My previous researches over the last few months show that CGRP is most certainly involved. The new drug would be a prophylactic/preventive, rather than one to deal with the headache after it’s started, such as a tryptan.
….is another, not so quick read on the same subject.
As I don’t believe ANY CSD/aura episodes actually ARE cured until at least a year’s testing has been carried out (and then it’s not a 100% defo. conclusion), I’m still looking at other possible causes of abrupt onset of CSD/aura, especially after there has been a lengthy “clear-period” of no CSDs and migraine headaches. This clear period for a long time, and then an abrupt onset of CSDs close together is THE most puzzling aspect of the problem. I think it is made even less clear by the simple fact that there are probably many different causes of CSD as proven by the scientists in their experiments
It has been suggested that “micro-embolisms” (microscopic bio-debris) and microscopic air bubbles can be involved in CSD. This appears to come from a heart deficiency, a tiny “hole” between chambers. There is no way I can test this out.
Another more interesting suggestion is ROS, or Reactive Oxygen Species causes oxidative damage (yes, in the brain too), and that oxidative stress is a factor that MAY set off a CSD.
ROS has to reach a balance in the body as it is used as an anti-microbial/viral defence system. Meaning “just right” is good, anything else — bad.
There is evidence that ROS could be responsible for the actual WAY in which a CSD takes place, meaning the massive disruption and depolarization of neurone and glial cells in a brain.
So….I’d like someone out there in migraine land to test this one out to see if the consumption of the right kind of vegetables (highly colored ones I’m told) has an effect on oxidative stress causing CSDs. Indeed, there may be someone out there already doing exactly that, so if you read this, please report in.
It seems there are other benefits claimed for oxidative stress reduction, e.g. the slowing of the ageing process et al.
Interesting quick read…
I should have added in my previous comment that…
4) I can find no connexion with the weather and CSDs* despite careful monitoring of temp. and air (barometric pressure) over time. Not with me anyhow.
My current investigation is revealing the “human brain operating system” if you like is even more complex that I thought. It makes silicon chips with millions of transistors look really simple by comparison.
However, I’m quite convinced I’m in the right direction, in the right area. I’m pretty sure that the ‘secret’ of this problem is chemical/amino acid/hormone based. There is a fine and delicate complex balance in neuron networks here, and some drugs such as anti-histamines may tip the balance in the STABLE direction. You should understand these neuron networks are PLASTIC in many ways, this plasticity prob. being the main factor in CSD runaway. Over time the neurone networks change of their own accord anyhow, but in day to day living they build themselves into networks to control various operations. The electrical “spike”** performance of brain neurons etc. is dependant on these, chemical factors. You will appreciate that CSD is a “runaway” phenomenon after certain brain areas have become over sensitized, or too excited to use the scientist’s term. Although I still don’t know why the majority of migraine/aura disturbances tend to be in the morning, almost as if sleep has something to do with it, i.e. the shutting down of the conscious areas of the brain.
One of the factors I bear in mind especially is that a CSD can be triggered in almost ANY healthy animal or human (by for instance the use of nitric oxide). So we shouldn’t regard this migraine business as a disease, but merely a mal-function, a mal-adaption to real-life living circumstances.
As far as I’m concerned as a layman, I really only can use empirical methods to solve my own CSD problem, by possibly finding some substance that will damp down the excitatory nature of the complex neuronal brain structure whilst at the same time allowing it to perform properly. This is where the common drug Pizotifen fails as a preventive by making the patient feel drugged and drowsy all the time. There is also a suspicion in me that the human body/brain can get “used to, or tolerant” to drugs, and their beneficial effects can diminish over time. I AM lucky in that the following migraine headache after an aura is very rare with me.
If there has been anything that facilitated CSD investigation, it has been the invention of brain scanners such as PET scanners, MRI scanners. The MRI scanner scotched the old belief that migraines were to do with vascular contraction and expansion entirely as an example.
*Aide-memoire — CSD means cortical spreading depression or depolarization (of neurone cells in a part of the brain), commonly the visual cortex, but other, silent areas area are possible. This means the word “runaway” I use here, because runaway is exactly what it is. I prefer the word depolarization BTW, it seems more accurate to me. This CSD leads to the migraine headache set off by the trigeminal nervous area of the brain, leading to serious pain being felt in the meninges, a brain covering.
**The electrical “spikes” between neurons are the way they communicate with each other in the neural networks, sometimes called action potentials. The nearest comparison I can make is a single transistor being used as an amplifier. The spikes are digital in basis, but there is an analog component esp. involving timing between spikes. We are talking millivolts here. The interconnect between neurons is complex, not like a simple copper wire. These interconnects or synapses are “gain-controlled” like a transistor can be, this control being via a neurotransmitter between in and out. Here is where the root of possible CSD could be….
Said it was complex!!!
I can report as of today, 15/07/15, there have been no auras/CSDs for me so far on the vitamin “B” complex food supplement. The idea here is to see if the homosysteine levels are too high, which have been reported among migraineurs. The vitamin B complex is said by many authorities to reduce the homosysteine levels. I also note the following, after observation. These are all of course personal to me, and may or may not apply to others.
1) There seems to be no connexion with glucose blood levels and migraine auras.
2) There seems to be no connexion with yawning. This seems to be a coincidence.
3) There MAY be a connexion with histamine, but in a roundabout way as explained in the next para.
My current investigation concerns what is called “homeostasis”, just a fancy word for stability.
There are many homeostatic sytems in the human body, including the brain, running into hundreds. Your car can have many similar systems controlled by microprocessors. Example: You run for a bus, and when you’ve caught it your breathing is fast, your heartbeat is fast. Two homeostatic systems have been “disturbed” due to a glucose demand by muscles, and oxygen demand from same. After a while as you’re sitting, the system reaches homeostatic stability again. You feel comfortable.
Brain homeostatic systems are more complicated. The neuronal systems which have grown as you you develop all have their own kind of “negative feedback” systems, in which a neuron group feeds part of its output back to the input (in anti-phase), thereby reducing INSTABILITY and keeping the homeostatic system here more stable. But there is also POSITIVE feedback (which can be UNSTABLE as you might think) . If this were not so, the system could not perform its primary functions, thought, memory, insight, invention, etc.
Now here’s the real root of it all, the real skinny I think they call it now.
These feedback systems have what could be called “delay lines”, or a system that “pauses” the feedback. Audio engineers will understand this immediately.
The delay has, naturally, a time-period, sometimes called the time-constant.
It seems with migraineurs that this time period is too slow — this is the real root cause of the auras which lead to migraine headache. What are we talking here? When the time constant is hours or days, this will not stop the runaway cortical spreading depolarization, CSD (the aura) from happening if the homeostatic system here is disturbed — the negative feedback is not fast enough. The time-constant suggested by the boffins is in the order of THREE SECONDS for the homeostatic sytem to work, not several hours.
Chemical balance in the brain has a lot to do with neuronal function, and its time-delayed negative feedback for homeostatic stability. Hence the test by me to see if homocysteine levels being too high is making the feedback response too slow. and therefore some “knock” or disturbance (like the tyramine in cheese, or the food additive MSG, monosodium glutamate). There are many such “knocks” to the brain in this real world, the trick here being the brain’s homeostatic systems being able to accept the knock and RECOVER quickly.
We should not focus on what is disturbing neuronal balance in everyday life, but focus on the brain’s efficiency on “disturbance-recovery” from the inevitable if you like. I think this approach accepts ALL the known data on migraine/aura.
In case you’re thinking “but I don’t get the auras, I get the headache only”, you might well be getting CSD in another unused, “silent” part of the brain, OF WHICH YOU ARE UNAWARE. It’s only when the CSD happens in the occipital or visual cortex, you are only too disturbingly aware. The connexion between CSD and headaches is now well established among the boffins, no-one challenges this anymore. The CSD spreads to the trigeminal system and the result is severe pain in the meninges, but it’s a ‘phantom’ pain, as there’s nothing wrong with the meninges at all.
So far so good.
As usual. anything to do with migraine and fixing it is super, super-slow. Please be patient.
I can now report that antihistamine pills are not the “magic bullet” I was hoping they would be.
Although on starting with cetirizine hydrochloride at 10mg. I had nearly nine weeks clear of auras, nonetheless I had two more after that at weekly intervals.
I am now giving the vitamin B complex a try (mainly for riboflavin, B2) plus regular glucose drinks, plus iron tablets.
However I shall continue with the antihistamine as that has been the only thing with me that had any effect. I’m also looking into the “migraine generator” as it is called located in the brainstem.
Oh, BTW, before each of the latest auras, I had VERY strong yawning effects the day before. I now use this symptom as an advance warning. Data from the i/net show that compulsive yawning happens when the blood 02 and CO2 levels are normal. It has been suggested that yawning is a natural way of “cooling the brain” which it is said needs to work on a very narrow temperature band. As does nose breathing vs. mouth breathing.
George, they may not be a cure-all, but it sounds like they’ve definitely helped.
HI! I just came across your website as i am gathering information about mast cell activation disorder and histamine intolerance. I was wondering if you could forward me the information about the phx doctor you went to and if you could provide some info on how the meeting went, was the doctor helpful and open to your ideas discussed in this entry…
thanks for you help. Im going to spend more time reading closely through your blog to learn how to help my daughter
Sorry, haven’t read all comments, so don’t know if this has been brought up. The 1st thing that comes to mind is after I went gluten free, my migraines decreased and now can’t recall the last one. 2nd thing is getting the MTHFR genetic test. If there is a mutation in the C677T portion, this has to do with methylation of Folic acid & B vitamins correctly, and therefore the possible inability to detox the products that the body can’t break down. I suffer from immediate headaches from eating teaspoonfuls of food and have to stop that particular food. Did the blood test w/ a Naturopath doc. MTHFR.com (has an overwhelming plethora of info, btw) has a list of practitioners who know about this genetic blood test, and the list is by state. I believe this test can be done w/ a cheek swab as well.
Elita, I’m glad you’ve found relief. That’s definitely a culprit for some people. I had an unusual reaction to a MTHFR supplement. It triggered an intense depression. It’s rare, but I like to mention it in case anyone experiences something similar.
Thanks Dr. Deb. Still no auras for me, nearly two months now! (I hope I don’t get one tonight after being so confident…)
George. I appreciate the info and your thoughts in processing such complicated bio-physiology. And you discovered how helpful a simple anti-histamine can be in modulating your migraine trigger mechanism. I hope others can benefit from this too. I certainly have!
I did say in a previous posting that it would seem that histamine excess is not the only root cause of CSD/auras leading to migraine headache, histamine only applies to those who are histamine-sensitive (like me), thusly upsetting brain stability/homeostasis. I think this one also is a possible cause, among others as mentioned.
An amino acid neurotransmitter that acts to excite neurons. Glutamate stimulates N-methyl-d-aspartate (NMDA) and alpha-amino-3-hydroxy-5-methylisoxazole-4-propionic acid (AMPA). AMPA receptors have been implicated in activities ranging from learning and memory to development and specification of nerve contacts in developing animals. Stimulation of NMDA receptors may promote beneficial changes, whereas overstimulation may be a cause of nerve cell damage or death in neurological trauma and stroke.
(Acknowlegements to Brainfacts.org)
Stress (I’ve included this extra one as many consider its migraine/aura possible causes).
Any external stimulus that threatens homeostasis — the normal equilibrium of body function. Many kinds of stress have a negative effect on the body, but some kinds can be helpful.
I now look at loss of brain stability/homeostasis by some cause is the ROOT REASON for CSD/aura, or silent CSD/aura, leading to the headache. There is a “sensitization level” of substances in any brain, which if exceeded will create a CSD. So a “trigger” substance if consumed (eg. cheese, monosodium glutamate, aspartame, chocolate, some wines etc.), CAN push the aggravating substance level OVER the basic sensitization level, (for you), thusly starting a CSD. Cheese for instance contains tyramine, and if that’s what you’re sensitive to, you can get a CSD from eating it. Of course, one must factor in that individual variability as to sensitization levels etc. to get a clear picture of why and how these CSDs are started.
I’ve put a lot of work into this whole business of migraine/auras, and I hope I’ve helped a few at least. And unless one gets migraines, most people would find it a bit tedious to get through. Something else important might come up, but I think for now I’ve gone about as far as a lay-person can.
Further research indicates that histamine affects neural excitability in a non-linear fashion. Small amounts of histamine over short periods actually attenuates the excitability, whereas larger amounts over a longer period has the opposite effect. This seems to explain the contradictory evidence re. histamine involvement in our complaint. Is there anything straightforward in this aura/migraine problem??? Something like this really does make it difficult to get to the root cause/causes.
Since I still have had no auras since starting the antihistamine (cetirizine hydrochloride) dosage at 10mg per day, I’m taking this histamine route as a remedy for me very seriously.
I’ve noticed other effects with the antihistamine. Apart from much less itching at bedtime, I seem generally calmer, almost like a minor tranquillizer. The state of the bedclothes upon rising in the morning indicates generally better sleep. All this would show improved homeostasis in brain areas, i.e. less sensitivity.
So…..It would be fair to say that CSD/auras start because of too much histamine in the brain over time, which would have a “plateau-level” effect, and that too much histamine makes either the visual cortex (occipital) or a ‘silent’ area of the brain go “off on one” by being over-excitable, going into that runaway effect of sweeping depolarization we know only to well, as it usually leads to trigeminal upset which is how the headaches in the meninges start.
I would love it if there were a simpler way of looking at this problem, BUT THERE ISN’T!
I would love it too if I thought excessive histamine in the brain was the only cause of aura/migraine for everyone, BUT IT ISN’T!
This website (Google it) is one of the best I’ve seen, the language is not too heavy and there are some pretty brain pictures.
Deciphering migraine – Journal of Clinical Investigation.
It’s the first one I’ve come across suggesting that disruption of the blood-brain barrier (called just “BBB” everywhere) is the mechanism whereby the CSD wave starts the disruption in the trigeminal area causing the headache. Interestingly, the CSD wave is not involved in any blood-vessel constriction but by a huge increase in oxygen demand by the depolarized neurons and glial cells after depolarization. This increased demand results in hypoxia in that area. Wierdly, the authors have found that women who get many CSDs over a prolonged period, like a lifetime, actually perform better in cognitive tests than non-migrainous women. It’s as if any hypoxial damage is more than made up for by neuronal adaptation of some kind.
It is also suggested that another pathway for CSD apart from the visual cortex could be the cerebellum, just under the occipital lobe responsible for the visual cortex. This pathway for CSD would not be noticed by the patient, as it is “silent”.
Everywhere it is suggested that the major reason for this sensitivity is gene-related, and that the female increased sensitivity is due to ovarian hormones, again showing that CSD and migraines are the result of increased sensitivity from a pre-disposition more than anything else.
Some things are now falling into place about the elusive nature of migraine, headaches and aura.
!) ANYONE, including animals, can suffer from CSD(aura) and a consequent headache. It’s not just migraineurs like you/us. The big difference with migraineurs is the level of SENSITIZATION to certain substances inherent with unfortunate migraineurs.
2) CSD and consequent headaches may well revolve around your own particular “gremlin” if I may put it that way. With me it looks like histamine is mine. There are little giveaways like runny nose, watery eyes, sneezing, itching and all the other effects of histamine. But histamine is not the only gremlin — CSD causes are now known to be serotonin, tryptamine, glutamate, as well as histamine and prob. others. There is also the possibility you could be sensitive to more than one of these. Odd substances such as nitric oxide may also be your ‘sensitive’ substance. This stuff is in the air all the time in cities with traffic.
3) If you’re taking a preventive/prophylactic every day to reduce your sensitivity, opinion has it that it takes some time to achieve full effect, and a month might be typical. It could be beneficial to find out just what is your personal ‘gremlin’ and take its antagonist, e.g. antihistamine if your ‘gremlin’ is histamine. BTW a drug such as Pizotifen is only a minor antihistamine. There seems to be long-term de-sensitization with the preventive drugs, so much so they can be gradually reduced after a few months.
4) As the headache is the thing about migraine which really “bugs” most sufferers, the aura being more like a nuisance, I can say (from research) it originates in the trigeminal vascular complex in the brain and is the consequence of INFLAMMATORY neuropeptides, all due to over sensitization of this part of the brain in migraineurs. The aura, whether obvious or “silent” (meaning in unused parts of the brain) is the pathway setting off the trigeminal. The blood vessels in the trigeminal are affected, and the “pulsing” of blood in here from the heart here gives the headache a pulsing effect. It is in this area that Sumatriptan works to abort the headache, unlike a conventional painkiller. It seems so far that, although Sumatriptan works, there can be some side-effects, mainly nausea, but I’m sure the drug companies will be working on a drug with less side-effects.
With the current very high levels of air pollution in the south of England, any comments from our readers there as to incidence of migraine/aura currently?
Hi Dr. Deb, very sorry to learn your unwelcome malevolent guest has been calling again. It may help if you think back over the past few days to determine if you’ve done anything unusual, eaten anything unusual that could be a reason for the increase of aura/CSD events. You mention gardening, might there be some allergy-style connexion here? Some spores, pollen being breathed in and upsetting your auto-immune system?
If there’s anything I’ve learned about this migraine/aura business, it’s that one needs to find one’s own individual answers and remedies. Unlike electronics, a successful diagnosis in the medical sphere won’t always transpose to anyone and everyone. But I must say the internet search engines are a Godsend to sufferers like us, more than a useful tool, an essential tool.
I’m not assuming I’ve solved my aura/CSD problem yet, as in the past I could go for 6 months or more without any auras or treatment at all. HOWEVER, as my daughter also has found the antihistamine route productive at the same time as me, I am convinced this route is useful. She had one migraine plus aura while taking Pizotifen as a preventive, but the event gap between attacks was four times longer than without the Pizotifen. So this antihistamine must be having a beneficial effect. Taken immediate upon an aura starting, the Sumatriptan works fine, with a side effect of nausea however. Maybe a half-dose of Sumatriptan will still abort the headache but with a reduced nauseous side effect. It seems most people are very happy to tolerate the side effects so long as the headache is kept away.
Hi George D. I believe your auras have decided to move out. I think they have begun unpacking in my brain instead. The stress of the Easter/Passover/spring gardening season has trumped my preventive strategies for now. 2 auras in 3 days, one horrendously painful day, two holiday meals eaten with extreme restraint and caution (I prepared most of the dishes) and brain fog and all. Oh boy. Things are better on your side right now! Best, Deb
Kerry- you mentioned there are low histamine foods which are still a trigger for you. Is it possible those are foods you are allergic to? Have you done food allergy testing?
Barbie, I’ve had food allergy tests done and am not allergic to anything. There’s little rhyme or reason to why I react to certain foods and not others.
Have a look at:–
and in particular read the “H1” paragraph. It is saying most of what I’ve discovered and reported here about the relation between brain-generated histamine from local mast cells and the effectiveness of an OTC antihistamine such as cetirizine and its “delayed-action” on CSD via the H1 receptors in the brain. I think that realizing the delayed-action feature of an antihistamine (of about 6 to 8 hours) is MOST important, thusly making its use and effectiveness as a preventive rather than a fast-acting remedy. It would be improper to judge an antihistamine as being fast-acting.
BTW — still no migraine/auras for me, fingers crossed it’s working.
Mast cells are mentioned in the website title here — interestingly, mast cells grow in the histaminergic neuron cell area in the brain (inside the posterior hypothalamus) during late childhood.
This could explain why my first migraine/aura attack was at the age of twelve. As mast cells appear to be the source of self-made histamine in primates such as us, this could be a reason why younger children seem to be largely clear of migraine.
Also I have a suspicion that there are amines other than histamine which may be at least partially responsible for CSD. If I find any, I’ll let you know.
Lately my researches are showing up something interesting about histamine — that is, it doesn’t pass the blood-brain barrier easily. So histamine circulating in the general blood supply won’t have a major effect on the brain, and therefore any CSD., which is held to be the pre-cursor of aura/migraine attacks. The general blood-histamine level would need to be very high to have an effect.
The brain apparently makes its own histamine via neurone cells inside the TMN, (TuberoMamillary Neucleus), which is inside the posterior hypothalamus. However we know that antihistamines must cross the blood brain barrier since one effect after taking some by mouth is drowsiness.
So it could well be that most of the aura/migraine effect from histamine and CSD is generated INSIDE the brain, with only a minor proportion from outside via the general blood supply.
Why excess histamine might be generated in this way from inside the brain is still a puzzle, but I’ll report if I find anything. This internal histamine is involved in the sleep/wake cycle and is excitatory, and I’m pretty certain that CSD is a symptom of runaway over-excitement in the visual cortex causing the aura (or silent aura in other than the visual cortex) and subsequent headache. To me the brain’s entire operating system seems to require some pretty sophisticated control circuits to keep it stable and functional. These control circuits involve hormones, amines and low-voltage electrical signals (spikes/action potential) together with delayed feedback methodology to achieve stability/homeostasis. This stability angle might well be what is being affected by excess histamine and leading onto CSD plus headache.
George, mast cell degranulation in the dura (a region of the brain) has been implicated in migraine.
Anti-histamines and DAO are clearly a breakthrough treatment for some of us with daily migraines that seem to worsen after a meal. I hope this gets wide coverage – how can this valuable site be made more “visible” on the Internet?
DrDeb, it’s getting more widespread coverage. This spring, a paper was published on it in a scientific journal. Here’s a writeup of the paper: http://www.nyheadache.com/blog/anti-histamine-diamine-oxydase/.
Antihistamine of the cetirizine hydrochloride type,
ASDA…….10mg. tabs. qty. 15 for £2.
Tesco…….10mg. tabs. qty. 14 for £1:50.
p.s., still no aura/migraine with me, 15th day now.
Thanks for your prompt reply-
One more question- is it true that you battled with a chronic, daily, debilitating headache for years before discovering that a low histamine diet and DAO supplement, (along with an antihistamine), helped you the most?…. We have not been able to see a connection between foods and headache, since the headache is always there……
Barbie, DAO combined with a low-histamine diet have been life-changing for me–far more helpful than any other treatment I’ve tried in nearly 20 years. For the first time in my adult life, I know what it’s like to not have a migraine every moment of every day. I have chronic migraine and one of my biggest triggers is food/eating. Every time I ate, it triggered a migraine, either because of the food I ate or because of the histamine release that’s part of the digestive process. I still have to eat a low-histamine diet, but the DAO helps tremendously.
I know what you mean about it being hard to trace to food. I was positive eating was a problem because I so often felt worse after eating, but typical migraine/headache diets didn’t help and my doctors didn’t have any suggestions. It’s possible to have a constant headache or migraine for many reasons. For me, it’s largely histamine-related. Perhaps that’s the case for your daughter, too.
Kerrie – My 21 yr old daughter has been suffering from a chronic daily headache for over a year and a half- nothing helps. It is looking like there may be some mast cell activation going on and a starting regime of H1 and H2 blockers has been suggested along with daily aspirin to block prostaglandins. I am wanting her to try Histame or Histamine Block – I have purchased both. Which do you recommend starting with, and how long do you think it would take to know if it is helping???..(She is doing a low histamine diet as well, for the most part).
Barbie, Histamine Block is stronger than Histame. I usually use Histame only for small snacks or drinks (like coffee). Probably for meals, Histamine Block is a good start. I’ve found one capsule covers about 400 calories of low-histamine food. I noticed a difference immediately, but I was only eating 10 foods at the start. I recommend using it consistently and going through the whole bottle to see if there’s a change. Seeing a change will depend on how long it takes for a your daughter to develop a headache in reaction to foods and she might find it works for some foods and not others. I have multiple low-histamine foods that are still triggers for me. I haven’t figured out that piece of the puzzle, but will write about it as soon as I do! My fingers are crossed for you and your daughter.
Separately from the above, and in conjunction with my March 7th. posting, it occurred to me that we just might be looking at the aura/migraine situation too hard at a very bad symptom, the HEADACHE, which is probably only a manifestation of something else, despite its overwhelming pain. This is understandable.
If you have a certain kind of auto-immune system (because of genetic pre-disposition), a certain kind that is over-active and reacts to substances that won’t harm you, with an inflammatory response (histamine), you end up with runny nose, itching, watery eyes, etc.etc., how is your BRAIN going to react to an inflammatory substance/situation like histamine? It could well be that it reacts the same as it does with other substances (of the nitrous oxide type for instance), with CSD, cortical spreading depression, or depolarization as I prefer to call it. It is in my view 95% certain that the migraine headache is preceded either by the well known aura (of CSD) or a similar CSD in a part of the brain with some of those 90% unused neuronal assemblies we are told about by the experts, giving NO INDICATION a migraine headache is on the way. I.e. the ‘silent’ areas of the brain. This situation would be very difficult to “catch” with a PET scanner as the radioactive injection has a half-life of only 5hours. At best, you would be scanning the brain but shutting the stable door after the horse has bolted, after the CSD has gone its way and caused the headache Currently no-one can say if the migraine event is neurological OR vascular (vaso-constriction/dilation) or indeed both at once.
But it can be said with considerable justification that the auto-immune system may well be the root cause of CSD. together with a genetic pre-disposition causing that innate over-active auto-immune system right from birth in many migraineurs. And therefore the root cause of those debilitating headaches so many unfortunate people have to live with. Can anyone say how this view might explain the female increased propensity to migraine with progesterone and estrogen being involved?
I disagree that no one knows if migraine is neurological or vascular. It is clearly neurological, but can have vascular involvement. Cortical spreading depression is part of the migraine aura and may or may not be part of migraine without aura. The research continues to evolve.
Thank you Kerrie,
When one is a diagnostician in the electronics business, a number of things get learned over time.
Don’t decide what’s wrong then try and make the facts fit one’s diagnosis. The REAL facts about the problem have to be discovered by testing, testing, testing. It’s not an excercise about proving one is right.
Always go for the simple things first. Apart from being easy, one doesn’t feel such a fool after spending hours on something (you think) is complex, only to learn there is no power coming out of the wall-socket.
Look at ALL the clues with an open mind. In the case of migraines and histamine, there could be other clues about histamine intolerance/excess.
Always bear in mind “experts” could be wrong, especially in the medical field. But then of course, they could be right too. So treat the “expert” opinion as another clue and no more.
Even when you think you’ve “bottomed” a problem, only time will tell whether or not you’ve really ‘nailed’ it.
A diagnosis for one item/person may or may not fit another. So don’t make assumptions, and most partic., don’t get fooled by other people’s assumptions!
Will keep you informed…
I’ve been taking one 10mg. cetirizine hydrochloride antihistamine tablet now each evening at 11pm. for 14 days, and there have been NO auras. I should have had at least two by now.
Three other effects of this antihistamine have been noted:–
1) The itching I suffered on going to bed has greatly diminished, hence I get to sleep better. And before anyone assumes “bugs in the bed” I’ve gone to town on cleaning everything, the mattress on both sides with two different vacuum cleaners, all sheets etc. changed — no effect. Full application of Quellada lotion — no effect.
2) My brain seems to work better, with better memory — but this is of course entirely subjective.
3) I feel cold much less, although the thermometer at home says ‘no change’. Therefore I’m saving gas. Since each antihistamine pill cost 13.3 pence from Asda, I’m probably in pocket.
My daughter has been taking a prescribed antihistamine, Pizotifen as a preventive — there has been a dramatic reduction of her bad migraines. She gets the auras too (but I don’t get the headache except very rarely, and then it’s not much).
Fingers crossed the antihistamine keeps working… I’ll report any further findings.
George, that’s great news! I’m glad your daughter is doing well, too. I thought you might be interested in this journal article on histamine and migraine: http://www.ncbi.nlm.nih.gov/pubmed/24433203. It’s only the abstract. The full article is available on Medscape, but you have to register for a free account first: http://www.medscape.com/viewarticle/820563.
One would fully agree that migraine/aura is highly personal — there seems to be as many possible causes as there are sufferers!
The operation of neuronal activity is highly complicated as can be ascertained so far. It seems neurons fire in “bursts” of spikes as well as individual spikes. These spikes have a frequency in the very low audio range. Also, most interestingly, the neuron system operates by both negative feedback (giving stability) and positive feedback (giving the opposite instability). There is also a time delay in the feedback paths of milliseconds. As any audio engineer will confirm, one of the ways of damping down acoustic feedback from a microphone when the speaker is in the same room is to employ a slight time delay in the mic. lead. This works, but only up to a point. A very short delay isn’t much use, but a long delay produces irritating and confusing echoes. So you have to have some kind of happy medium.
It could be that migraineur’s brains are simply too fast for their own good. This would confirm the inheritance factor.
Another interesting point has turned up — those unfortunates who have migraines without aura may actually be having an aura prior to the headache, but in so-called “silent” areas of the brain, not the occipital lobe containg the visual cortex, so you would be largely unaware of the impending unwelcome malevolent visitor. This is according to educated opinion. However there just could be some odd little clues, so please post if you are a headache-only sufferer, but get a “feeling” one is coming.
It’s a little soon to come to any conclusions, but the most promising route (for me) is the antihistamine one with cetirizine hydrochloride available over the counter in UK. Really you have to use antihistamines as a preventive, as they seem to take 6 to 8 hours to work. Taking one immediate as soon as an aura starts so far just seems to shorten the aura by half.
And here’s the proof, courtesy of “The Telegraph”
My researches are showing there is a new/novel aspect to weather affecting migraine/auras.
It seems each year between one and one and a half billion tons of dust is swept up into the earth’s atmosphere from African deserts. This dust is not the the cause of migraine/auras, but the micro-organisms it is carrying. (The dust is inert after the organisms have been killed by gamma ray irradiation) Because there is much sunlight and water from clouds, these micro-organisms multiply rapidly.
This lends credence to the idea that cortical spreading depolarization is an allergic-like response, possibly alleviated by antihistamines. And incidentally, I’m getting the impression that an antihistamine should be administered some 6 to 8 hours before an aura starts, which then raises the question, how would one know? Sheer guesswork I suppose.
I’m following this guesswork regime with antihistamine cetirizine hydrochloride, and will report as and when I can say more.
George, weather definitely plays a role in migraine, though the specifics are still uncertain. CSD doesn’t have to be an allergic response to be connected to histamine. Thought it’s important to note that some people actually have migraine attacks/auras relieved by ADDING histamine to their bodies. Migraine is caused by many different genetic factors. What sets it off in one person’s body may not in another’s body–and, like with histamine, the trigger for some could mean relief for others.
The herpes virus, chicken-pox (which can live for years semi-dormant nr. the top of the spinal cord) and herpes zoster (shingles) are all coming up constantly with migraine/aura connexions.
George, that’s not a connection I’m familiar with. Is there research on it?
Google “viral connection migraine”
There seems to be a wealth of info. here.
George, I’m wary of Dr. Google on this one. Migraine is a genetic neurological disorder. A virus could set it in motion in someone, but the susceptibility has to already be present.
This one certainly deserves a look, there is even a drawing of aura-scotoma on the relevant para!
You might have guessed I’m pursuing the viral connexion with maigraine/auras now, certainly I’ve suffered from way back on-and-off with inner-ear infections causing dizziness and sea-sick type nausea. Right now one ear or the other goes “ping” and the sound gets muffled, to return to normal in about 30secs. or so. Many have noticed migraineurs have the constant sniffles, like a head-cold. There is a connexion with Meniere’s disease here, and an inflammatory auto-immune response.
Here’s a list of symptoms for you to juggle with; I got hold of this from the i/net after an overnight “think” following my previous aura episode:–
“Symptoms of meningitis
Severe head pain, that isn’t similar to other types of headaches
Sleepiness or difficulty waking up
Sensitivity to light
Vomiting or nausea
Loss of appetite
Interesting how many symptoms of viral meningitis co-incide with those of migraine. And the doctors say once you have a virus, you have it for life, it is only held in check by your immune system.
Food for thought here. There is a possibibility that migraine/auras are caused by some kind virus, and our inflammatory reaction to it. The headache most migraine sufferers get is in the meninges (the brain’s covering under the bony skull).
It seems to be generally accepted that bacterial meningitis is the dangerous one, the viral version being the “soft option”. Viruses are so small and so multitudinous that the technological route to a cure could be difficult (well, it IS difficult all right, as we all know).
As these data are tentative, I’d welcome any opinions ATM.
George, it’s unsurprising that they have some symptoms in common since both migraine and meningitis are neurological. Someone has to have a genetic predisposition to migraine to have migraine, which may or may not be present in someone with viral meningitis. Unfortunately, this is the kind of stuff for which there’s a lot of anecdotal evidence and little research. I think this connection is speculation at best.
This morning I had an aura episode, but before it, while doing the ironing, I had quite an aching neck/shoulders plus a slight sweatiness. I must have had a premonition because I took an antihistamine of the certirizine hydrochloride type immediate. The aura started about 15mins later.
The aura was of the visual scotoma type only, no other (usual) symptoms like memory loss, garbled speech, and numbness in the fingers. It lasted only about fifteen minutes, very short for me. After about half an hour, another visual scotoma happended, this time to the right hand side, lasting the same time as the previous one.
The current auras were separate from the last one by nine days, the one before by six days, that partic.one being a more major episode. I already cut my tea-drinking down to one cup per day in case this was a factor. I don’t drink coffee at all, or alcohol. Also I’ve taken to drinking a glucose drink made from still orange plus glucose powder, very cheap from homebrew merchants as brewer’s sugar. Note a famous glucose fizzy drink has aspartame in it, not advised for migraineurs.
So……I’m not too sure anything is being achieved yet, except that I think the antihistamine is useful, born out by my daughter’s prescription for same from the doctor. ATM I’m making a lot of mistakes typing this, a bit unusual for me. But it’s getting better with time. Waiting for inspiration again now…
George, it sounds like progress! I’m glad to hear it.
That’s a good point. It dovetails with something I heard/read earlier that said the migraine brain needs and craves stability and routine. Perhaps tracking our lives further back will help us see where that instability throws us off track.
Ramona, it can be a much shorter-term issue, like not getting enough sleep or not eating on schedule or not exercising regularly.
I’ve finally realized I’m looking at the whole business of migraines/auras from an inappropriate and unproductive angle. It seems we are dealing here with a PROCESS rather than an event or a series of events. It never struck me that the migrainous situation could be rumbling along in a subterranean fashion without the migraineur even being aware of it consciously. Meaning for example that today’s aura/migraine could have really started yesterday or the day before even.
So it means that “triggers” take on a different slant altogether. These triggers don’t cause the aura/migraine, they just make it start sooner than otherwise. This angle of view certainly fits the facts perfectly.
Getting the knowlege that there are clues in the pre-aura period, such as hot flushes, yawning, bad temper etc. has helped me more than anything else in dealing with this “uninvited malevolent guest” as it was so appropriately put. Also explains my daughter’s prescription for a once a day regular antihistamine as a continuing prophilactic. For me, as soon as I get the pre-aura signs and signals, I shall take a cetirizine hydrochloride antihistamine right away, and monitor the situation in perpetuity. Of course I’ll report here what’s what as time goes by.
I feel right now I could be getting somewhere…
George, yes, migraine attacks tend to begin before you’re even aware of them. That’s why tracking prodromal/premonitory symptoms are so effective, as you’ve discovered. Preventive medications can help manage fluctuations that may trigger a migraine attack.
Kerrie, read your link and I score on yawning, hot flushes and irritability.
My daughter only yesterday took a Sumatriptan tablet for the first time immediate upon an aura starting, on an empty stomach. It worked like magic within minutes, stopping the aura and everything that would have followed, i.e. a lot less misery for her. Here in UK such drugs are on prescription only, but one has to applaud the makers for coming up with something that works. Well done.
However, alongside the Sumatriptan, a strong antihistamine was also prescribed (I believe called Pizotifen) as a prophylactic. This was less obvious as to its efficacy.
Thanks for your observations Kerrie, — you know the single thing about this whole business of migraines/auras that gets my curiosity hairs bristling is the complete randomness of it all. Sometimes the attacks are spaced out six months, sometimes only a week. Why? I just can’t seem to let go the notion of causative factors.
One causative factor that just might be pertinant is that of some kind of slow build-up over a week or so toward an aura attack. And I’m beginning to think all the chocolate, cheese, sulphites, MSG., alcohol, caffeine etc. “triggers” are secondary to something else altogether; and if this something else could be discovered, what you eat/drink may become irrelevant.
How would one know that an aura build-up was in progress? Oh boy, this is a hard one. So far I’ve noticed some faint possible signs, more to do with mood than anything else.
Nontheless, my reader can rest assured I’m not going to let this one go, about getting to the root of this aura/migraine problem I mean. Even if it takes the rest of my life, I won’t give up.
George, I’m so glad it helped! Sumatriptan is also available as an injection and a nasal spray, which some people find more effective and efficient than tablets.
Mood changes can definitely be premonitory symptoms, but it can be hard to pin them down. Here’s an article on premonitory symptoms that might be helpful: http://migraine.com/blog/migraine-attack-prediction-premonitory-symptoms/. The best suggestion is to keep a diary of every migraine/aura and write down any suspected premonitory symptoms. In time, you might find a pattern of them.
Some people find triptans effective if taken at the first sign of premonitory symptoms, others don’t find them effective until the aura has begun, and still others don’t find them effective until the aura is over (this last one doesn’t really apply to you, but I’m being thorough). Once you determine your premonitory symptoms, then you have to figure out if triptans are effective before the aura for you.
There’s so much unknown about the physiology of migraine. There are external and internal triggers, some of which can be identified and others that can’t. It’s currently impossible to determine everything that contributes to attacks. I hope we get there in time.
The best way to live with this uninvited malevolent guest is to divert one’s attention to something that fascinates and stimulates. You have your academic pursuit of all things biological and neurological. I went to Medical School hoping to understand the human body. Well, it was a start. I hope our headache coping skills continue to be strong and effective. For me, it’s academic pursuits, oral magnesium, turmeric and ginger and greens, avoidance of my known food triggers, daily exercise, and acknowledging the weather and stress and social situations are gonna intervene. Keep strong. Deb
Errata: 3mm/sec. should read 3mm/min.
Updating — the internet is such a wonderful thing to find things out.
My further researches show when a migraine aura starts (the cortical spreading depolarization of neurons) it is by no means a simple event…
1) It starts at the back of the brain in the visual cortex.
2) It seems to be random as to when it starts.
3) The depolarization happens together with a non-neuro. event, vascular contraction (blood vessels) and expansion, starving a small portion of the brain from blood temporarily.
4) It doesn’t exactly start from a small spot; there is a periphery effect about the size of an egg, where the depolarization happens in a circular fashion.
5) The depolarizing event has a wave-front travelling about 3mm/sec., but most interestingly has an oscillation about it in the area of 80 to 150Hz. approx. This is most strange.
6) The aura event starts on the surface of the brain in back, very near the external environment.
So….what am I doing about it?
Bearing in mind that a number of migraineurs known to me inc. myself are getting a much higher frequency of auras/migraines lately (this winter), and reading an eminent professor’s comments in passing about brain temperature and its possibility of being a factor here, especially as the aura event starts on the brain surface where there could easily be heat-loss,
I’ve taken to wearing a wooly hat over the back of my head and neck to provide some insulation. I wear this all the time, in the nature of an experiment.
My experience over 50 years in electronics tells me that sometimes the most complicated-looking of problems can be caused by the simplest of causes. The only way is to test, test, and better test.
Sorry to have to report today another aura (without headache) after nearly a month of magnesium treatment — so I’m back at square one, even with two 10mg. pills of antihistamine, the cetirizine hydrochloride type. Oh well — this is just what we’re up against, proving an idea that works.
Next time I’l try the novel idea at WordPress.
If you suffer from migraine attacks, PLEASE PLEASE read this. Although the research was done in 2003, it is from a PET scanner of a higher resolution, and coincides most firmly with what I’m finding out re. over excitability (poor negative feedback/homeostasis) in the brainstem area. Most interestingly, it suggests that the migraine headache pain, the worst in the world, is from false information getting to the pain-receptors in the brain, fooling it into assuming there is something wrong in the meninges. In other words, not actually “real”, like normal pains, say childbirth for example.
I found this properly conducted investigation indicating that there is a clear link between histamine and NO (nitric oxide) insofar as histamine can stimulate the production of NO in the brain, NO being a potent agonist for migraine headaches. It also indicates the involvement of H1 receptors here, suggesting that antihistamines such as over the counter cetirizine hydrochloride may well have an effect on migraine headaches, contrary to many claims that only H2 and H3 receptors are involved.
“Lassen LH, Thomsen LL, Olesen J.
Histamine induces migraine via the H1-receptor. Support for the NO hypothesis of migraine.
Neuroreport. 1995 Jul 31;6(11):1475-9.
“In primates, histamine activates cerebral endothelial H1-receptors leading to formation of nitric oxide (NO). Twenty migraine patients received pretreatment with placebo or the histamine-H1-receptor antagonist, mepyramine, in a randomized, double blind fashion, followed in both groups by i.v. histamine (0.5 microgram kg-1 min-1 for 20 min). Headache characteristics were subsequently observed for 12 h. In patients given placebo histamine caused immediate headache during the infusion followed by a delayed migraine attack fulfilling IHS criteria for migraine without aura. The temporal profile of induced headache was exactly the same as after glyceryl trinitrate. Mepyramine pretreatment abolished both immediate headache and delayed migraine attacks. Our results suggest that a migraine attack can be caused by NO formation in the endothelium of cerebral arteries.” [Abstract].
My current thinking with the CSD/aura effect (which is generally considered to lead to the headaches) is that there is over-excitability in the neuronal brain system (due to four distorted genes in the person’s make-up) and that the system of homeostasis, also called negative feedback, which “damps down” this excitability, is not working properly for some reason. Currently I’m trying to establish if this small mal-function is due to lack of magnesium.
Posting this for any knowlegeable reactions:–
If “the weather” can cause a migraine/aura, may it NOT be exactly the weather, but some other effect that is secondary to the weather? One of the two big pollutants from vehicles is NOX or a combo of nitrous oxide and nitrogen dioxide. Normally this pollutant is blown away, but certain weather conditions in big cities full of vehicles can cause “pooling” of NOX and subject everyone to high levels of this pollutant.
Guess what the scientist use to actually provoke a migraine/aura so they can look at it on their MRI and PET scanners? No prizes, — that’s right, nitrous oxide!
George, it could be. It’s hard to determine exactly what it is about weather that’s a trigger, so there could definitely be other factors going on.
For some unknown reason, the month of January has been super-active with regard to incidence of migraine attacks and aura. Myself, my daughter and some of her friends have had something like FIVE TIMES OR MORE the number of migraine/aura incidents normal for each individual. Why?
Is it because of:–
1) Air pressure.
3) The flurry and worry of Christmas.
4) Consumption of unusual food.
6) Something else?
George, it’s so hard to know. Variations are usually chalked up to weather, but it can be a series of different things. It could be that unusual food wouldn’t be a problem in, say, July, but is in January because of weather. It’s so hard to sort these things out.
A convenient magnesium salt is old-fashioned Epsom salts which is magnesium sulphate and is very cheap at £1:50 for 200g. at Boots.
Rather than dissolving in water and swallowing, which can have a dramatic effect on your guts (its original intention after all), dissolve some in hot water in a dish and swab your arm with some on a sponge. This way is said to be more effective at getting some magnesium into your system.
George, epsom salt baths are a favorite approach for some people. Some take them preventively, others do when a migraine is coming on.
Daily magnesium supplements are recommended and effective for taking the severity of these headaches down a notch. The research is starting to reveal possible mechanisms for this, as you report today. I use a magnesium oxide/ citrate/ aspartate combo 400mg a day. Swanson Triple Magnesuim Complex. I get a little diarrhea sometimes but it seems to keep me off most painkillers most of the time. Funny though, I still get visual auras with very mild headaches and some grogginess, two in a row, one left and one right. Every month or two. I am 63. When I was a kid, these would be so severe I would have projectile vomiting and a ruined day. So aging is one way migraines change in character. By the way, a chiropractor has been re-aligning my neck vertebrae for about a year, and has greatly reduced the severe headaches that start as severe neck spasms.
I do gentle yoga to keep my neck and back flexible too. And I go outside for a long hilly walk 3-5 times a week, during daylight if possible. Less depressed now.
DrDeb, diarrhea is a common side effect from magnesium, but a different type can be easier on the stomach. There’s a small, inexpensive book called The Magnesium Solution that talks about different varieties that cause less stomach problems. I had a lot of nausea with some forms of magnesium. I now take 840 mg of monomagnesium malate daily without trouble.
Acknowlegement to “Thejournalheadachepain”, copy and paste —
“For many years it has been suggested that magnesium (Mg2+) deficiency could be involved in migraine pathogenic mechanisms by increasing neuronal excitability via glutamate receptors. To this regard, several studies have reported low values of Mg2+ in serum and blood cells over the interictal periods, as well as reduced Mg2+ ionized levels in more than 50% of migraine patients during attacks [167-170]. Low brain Mg2+ levels have also been detected in migraineurs by brain phosphorus spectroscopy . Furthermore, in MwA patients, magnesium sulphate administration was seen to significantly relieve pain and alleviate migraine-associated symptoms . Accordingly, systemic administration of Mg2+ has been shown to reduce CSD frequency induced by topical KCl in rat neocortices ”.
(MwA = migraine with aura).
As of today, 30/1/15, I can report after eating one pig’s kidney per day for almost a month, there was another “aura”, but not a big one. I’ve learned these auras are called CSDs (cortical spreading depression) in which brain neurons and glial cells depolarize in a sweeping and chaotic fashion from the visual cortex (rear of brain) at around 1mm. per minute. The word ‘depression’ is not meant in a psychological sense. I am abandoning the pig’s kidney route as a means of stopping the CSD. No scientist seems to know what triggers these CSDs., but MRI and PET scans have shown clearly exactly what is going on. No scientist knows proveably about any connexion between the CSDs and the bad headaches, but all assume there is one. There are serious drugs that will stop a CSD, but they can have nasty side-effects. These drugs are normally given for the psychotic problems such as bi-polar, schizophrenia, seizures.
Many of the scholarly scientific postings mention a connexion with poor magnesium levels in the body, so I’ve started today a course of one 250mg magnesium + 500mg calcium mineral supplement pill per day. Cost £6 for 90 pills. It appears magnesium ions are necessary for proper transport and management of potassium+ ions through the various neuronal pathways, also necessary for “habituation” a kind of homeostasis or negative feedback stabilization system in the brain.
These systems are incredibly complex and I’m using a lot of guesswork here to try and find something that will work. I will report any findings, but please understand this is a time-consuming business, and that what works for me will not necessarily work for anyone else, and vice-versa/
George, as I understand it, whatever triggers a migraine is what triggers CSD. Whether CSD is exclusive to migraine with aura or applies to migraine without aura is still being researched. In any case, triptans can stop an aura, even if no head pain follows the aura. Migraine preventives can keep the CSD from happening in the first place.
Magnesium is a migraine preventive with a good track record. It was the first preventive that helped me. I take 840 mg myself. Some doctors will do magnesium infusions either to break a migraine or as a preventive. Some people find that more effective than daily pills.
Re. taking antihistamines, I take one when there appears to be a histamine build-up from clues such as an excessively runny nose, tight throat etc. It’s some guesswork. I don’t take one regularly at fixed intervals. Dose is one 10mg. pill. I work to the “just enough to do the job” philosophy.
From what I can gather via the literature, maintaining the “right” histamine balance is required, the problem being to know what that is and if it is being maintained. To an extent, one has to work in the dark.
I’ve only just started eating pig liver and pig kidney so it’s far too early to say what the effects are, but rest assured, I’ll report any findings. Example: Last night I had what could be called a ‘half-aura’, i.e. no visual disturbance, no speech disturbance, but the chills were there plus odd memory effects. This after consuming some pig kidney cooked in the microwave earlier in the day. So a tentative conclusion would be that at least something interesting is going on, suggesting I might at least be looking in the right direction.
Thank you for your data Kerrie.
In regard of gut bacteria, only one appears to be at all effective in reducing histamine there by about 50% accoring to researchers. That is L-lactobacillus sakei. The rest have only minor effect. It doesn’t seem possible to purchase a pro-biotic containing this bacillus in Leeds at any rate. If anyone out there knows of a product that does contain this partic bacillus, please post it!
An antihistamine such as cetirizine hydrochloride works not by dismantling the amino acid histamine, but by blocking H1 receptors. But there are also H2, H3, and H4 receptors involved. It appears that H2 and H3 receptors in the brain are involved in migraine and aura, the effects of histamine and or migraine here being both neurological AND vascular. No-one knows which comes first.
DAO is interesting as it really does dismantle the amino-acid histamine, but it has the disadvantage of cost, availability, and needing to take it continually. DAO is made from pig’s liver and pig’s kidney, so I’m taking the logical step of simply eating the stuff from a butcher’s after cooking in the microwave. It’s not expensive, just being offal. As usual, deciding if this course is effective or not is a very long-winded business as with everything to do with migraine and aura. C’est la vie.
George, thanks for the information. There’s a possibility that even if the bacteria doesn’t work directly on the histamine, it can promote other changes that enhance one’s ability to process it. Microbiome research is in such early stages; I hope new developments are on the horizon.
I don’t remember if you said how often you take antihistamines. There’s a risk of developing a rebound effect from taking them too often. Basically, your body recognizes that you’re not using all the histamine you’re producing, so it releases even more. I’m not sure how prevalent this problem is, though I did learn about it from a knowledgeable and reputable health care provider. I’m not telling you to stop taking it, just letting you know it’s not without risk. I’ve been on a daily antihistamine since Aug. 2012 and know I need to try going without it to see if I improve now that I’m taking DAO.
I’ve heard of people eating pig liver and kidneys as an alternative to DAO. Please let me know what you ultimately decide about its utility.
Thank you for your posting, Dr. Deb.
When I have proven beyond doubt that the histamine route is the right one to follow for my unusual migraine condition, I was proposing to then go down the DAO* (diamine oxidase enzyme) branch route and get hold of some bio-gut bacteria that produces this enzyme, but finding a supplier could be a problem. I like a “natural” way to solve these medical problems, that would in this case be self-regulating. Any information on this from readers will be most appreciated. As usual with anything to do with migraine, everything is so long-winded to pin down as a cause, never mind find a remedy.
*Explanation: Some histamine is ingested from food apart from that produced from mast cells which may not be working quite as Mother Nature intended. I understand ingested histamine can be broken down by the DAO from a particular gut bacterium. Unf. I don’t know in my case if excess histamine is due to lack of DAO or mal-functioning mast cells. If anything interesting transpires, I shall report it here.
George, a reader tried DAO supplements and had success with them. Her husband, a pharmaceutical chemist, recommended a probiotic and it was life-changing for her. I’ve been taking probiotics since August and have had a tiny bit of improvement, but haven’t noticed anything big yet. I was starting to develop reactions to foods that had previously been OK. The probiotic seemed to stop those reactions, but I haven’t been able to add any other foods back it. It’s a slow process! Please keep us updated with whatever you discover. It’s thanks to readers that I feel as good as I do now.
I tried probiotics this week and gave myself an intense allergic reaction and have had multiple migraines. I was eating sauerkraut advertised for the helpful probiotics (and did not know anything about this histamine stuff). Who knew that sauerkraut had so many histamines… not I. I did not know how all of this was intertwined, thinking that I was helping myself.
Anyway, long story short, be aware of what is being introduced. I try to find natural alternatives to pills (i.e. foods) but this was a major fail.
Also, found a journal article that mentions DAO. It says DAO is possibly (controversially) supported by vitamin B6, copper, and vitamin C.
A research professional in endocrine/allergy disorders would be fascinated by your condition. Maybe it’s a mast cell disorder or other genetic variant. It wouldn’t affect treatment, as you already have figured it out. It might be of a academic interest for a research paper though. Sorry for your suffering all these years. Deb
Deb, thanks for the suggestion. I no longer think a mast cell disorder is the issue, but there’s definitely something unknown going on in my body! I’m always working to try to sort out what it is and appreciate all the input I receive from readers like you.
Forgot to mention another clue — apart from those wierd auras, I was also having inexplicable itching when I went to bed, even when nodding off on the settee, runny nose and sneezing, watery eyes when no virus was involved (dozens of simple temperature-taking over weeks showing no excess body temperature). Al these effects symptoms of excess histamine.
And another wierd thing. During an aura attack, I get “the chills”, shivering even though the room temp. is 70*F. After the antihistamine has done its job, the chills disappear and I feel quite warm about an half an hour later.
George, that’s fascinating. I also get chills no matter what the temperature is. I hadn’t connected that to histamine. Thanks for sharing! (And thanks for introducing me to the phrase, “fit as a butcher’s dog.”)
I just found this website — very interesting with reference to histamine intolerance.
For something like 20 years I’ ve been trying to get to the bottom of my migraine auras-without headache. Unusual I know. Only in the last few weeks have I found something that aborts the pro-dromal auras after 10 to 15mins. (They can last 1 to 2 hours).
I went very recently down the histamine unbalance route to find out what were causing these auras with a common anti-histamine, cetirizine hydrochloride, 10mg. dose. Three times in a row antihistamine has aborted the auras for me after 10 to 15mins. Moreover, instead of feeling washed-out after an attack, I feel perfectly normal, fit as a butcher’s dog after the antihistamine treatment.
What really tantalized me was reading about histamine intolerance on the i/net — all the words were so familiar to do with causing migraine attacks, migraine triggers. They were the same words, same time delay, same “plateau-level” effects as migraines. Ah-ha, I thought to myself, this has got to be tried. And it APPEARS to work, but being an experienced migraineur, I’m not assuming anything until it’s proved, proved, and proved again every which way.
A grateful reader…
George, thanks for sharing your story. I’m so happy you’ve found something that’s helpful in the early stages. Please keep us updated on how the treatment works for you. My fingers are crossed.
Keep up the good work. I’m perusing this angle myself, after failing every prophylaxis known to mankind. Fight on, fellow warrior!
Thanks, Ramona. Best of luck in your search. If you’re looking for more on DAO and histamine, this link has all of my articles on the topic: http://thedailyheadache.com/tag/dao.
I am so impressed with the effort of your research and effort! You certainly are helping many people. I have had migraines for 40 years and before that I had pediatric abdominal migraines. My grandmother, father and now my daughter has them. Triptans don’t work so well for me; Topamax and Botox help, but when I get a headache it lasts for many days, sometimes up to 10 or 12. I treat them with a combination of pain killers and anti inflammatory meds.
I live in Montreal, Canada and the doctors here are behind the times in research and treatment so initially I had to go to New York to get treated and was prescribed the Topamax. Botox treatment for migraine is not covered by insurance here, even if you have a prescription from a neurologist!!
I learned so much from your blog so please keep it up. Thank you!!!
April, thanks for your kind words! I’m sorry your treatment is inadequate. An abortive like Migranal or Midrin might provide some relief if triptans don’t. An antihistamine like Benadryl or an antiemetic like Compazine can also provide migraine relief. Best of luck in finding an effective treatment.
I too live in Phoenix and have migraines for 55 years. I was under the care of Dr. Carol Foster. After she stopped practicing in Phoenix I moved to the care of another Phoenix headache doctor. At this time I’m feeling the need for another approach or opinion. Could you please send me the name of your headache doctor?
Also, do you know of an alternative to DHE45 injections. It seems as if the manufactures of DHE have stopped production and is the only abortive medication that works for me. Migranal nasal spray does not work nor do narcotics. I will greatly appreciate any advise you could give me.
Bob, I emailed doctor information to you. DHE production hasn’t been stopped, but it does keep running into problems that delay it’s production. Here’s the latest info: http://www.ashp.org/menu/DrugShortages/CurrentShortages/bulletin.aspx?id=1050. If you can take NSAIDs, Toradol (an injection) might help. Not sure if you have contraindications for other migraine abortives, but I find Midrin and Amerge helpful. My husband’s doctor just told us that nasal spray or injectable triptans are the fastest-acting triptans. Also, combining drugs may be more effective than using one alone. Check with your doctor to find out what would be safe for you.
Would you be able to email me the name of the AZ doctor as well? I’m in Phoenix and am struggling with many of the symptoms you describe, as well as some other classic mast cell symptoms. But I have yet to find a doc who knows how to test for and treat it.
You express yourself well. You have enlightened me this morning with more puzzle pieces to the migraine syndrome shared by so many. Did that grilled jalapeño Colby cheese on Alvarado bread with home grown tomato and romaine and zucchini cause my 7/10 migraine headache 2 hours later? And why did it respond to two aspirin and just go away in 12 hours? Food does cause brain fog for me too. Now in my 60’s, and having experienced all sorts of migraines since 7 years old, I can only say that they won’t kill me and might make me stronger. I hope you can say the same. I also hope your research leads other individuals into exploration rather than just submitting to the doctors’ prescription pad.
Thanks, DrDeb. That meal you describe is full of histamine, so there could definitely be a connection.
Would you be able to share the name of your Arizona – based doctor? I live in Phoenix and would like to check him/her out. Thanks!
Laura, I’ll email it to you.
I’ve only just recently come across your blog thanks to someone’s twitter post about your post of the 8 important facts about Migraine on migraine.com & I find your posts so enlightening. As another person commented – you’re so knowledgeable and it shows in your writing. Thank you for taking the time to post about your life with migraines in order to help all of us searching for info in our journeys as well.
Thanks, Mindy! That’s very kind of you to say. I’m glad you’ve found my writing helpful.
May I just say what a comfort to discover an individual who actually knows what they are discussing over the
internet. You definitely realize how to bring an issue to light and make it
important. More people should read this and understand this side of the story.
I was surprised you aren’t more popular since you certainly have the gift.
Hi there – have you by any chance been tested for food intolerances (IGG testing?) I was positive food had no relation to my migraines until I tried the Buchholz 1-2-3 headache diet and noticed a huge decrease in migraines. I then went to a naturopath and was tested for 19 common food allergens via IGG testing, and had reactions to 13 of the food types. The doctor was shocked and said not to bother testing further since I would probably react badly in any deeper testing. I then went to my normal allergist and she insisted IGG testing is worthless. :-/ I tried a quick elimination diet and cut wheat, dairy and eggs, and noticed that wheat triggers brain fog. Nothing else seemed to cause symptoms. I’m still leaning towards food intolerances and immune problems (allergies, inflammation, etc) as the root cause of my migraines.
Interesting. Good luck, Kerrie!
Thank you for this Kerrie, it is extremely interesting. Best of luck on your continued journey, and for your appointment with the headache specialist!
Glad to hear this news. Thanks for sharing.
Super well-written and fascinating analysis. And hopefully you’ll be able to continue using what you’re learning to have fewer migraine days 🙂
Wow that is quite interesting. I hope this is what really turns the pain cycle around for you! Best wishes.