While I have no trouble writing about my emotions in relation to treatments or life with chronic illness, telling you the details of my treatment makes me self-conscious of talking about myself. Here’s an update for those of you who are curious about my mast cell disorder exploration, success with the digestive enzyme diamine oxidase, and sorting of food triggers.
Mast Cell Disorders
The mast cell specialist was kind and knowledgeable. He did a full mast cell disorder-related work up (including the fourth time in a month that I had to do a 24-hour urine collection) and a bunch of food allergy tests. Everything looked great. No mast cell disorder and all negative responses to food allergies.
Mast cell disorders aren’t too well understood, so there could be other markers to test for eventually, but I’m not concerned. When I add up the results of those tests, my symptoms, the genetic testing that showed DAO-related mutations, and my great response to DAO, I’m pretty well convinced there’s no mast cell disorder here. For which I am very grateful.
Diamine Oxidase (DAO)
Sunday marked eight weeks since I started taking the digestive enzyme DAO with every meal and I’m still doing really well with it. I use the Histamine Block
brand most often, but occasionally supplement with Histame, which has a lower dose in each capsule, for drinks or snacks. I get heartburn if I don’t eat enough calories or drink enough water when I take DAO, but that’s easy to remedy. Other than the thrill of finding something that keeps me from having a migraine every single day(!), there’s not much to tell.
Unfortunately, I still have migraines most days while I continue to test (and react to) foods and sort out what my other non-histamine-related food sensitivities are. As soon as I recover from one migraine, I jump back into testing foods, which frequently triggers another migraine. Testing foods seems like it would be straightforward, but it’s extraordinarily complicated. There’s the food itself, but the build up of certain naturally occurring food chemicals, types of food, and even quantity also figure into the equation. I will spare you the boring details (which my poor, sweet husband has had to listen to for months). It’s messy and confusing, but I’m making progress. I’ve never been so excited to eat kale, cauliflower or zucchini and I’m over the moon that decaf coffee doesn’t appear to be triggering migraines or other headaches.
My early success with the Cefaly, the external nerve stimulator I told you about last summer, didn’t hold up. I used it for at least an hour a day for six months, over which time my relief from it decreased from three hours a day to no relief at all. None of the published studies on the Cefaly talk about this happening, but none of them studied its use for more than a few months.
The Cefaly can be used to stop migraine attacks in progress (and to stop other types of headaches, according to the manual, though all the published research is on migraine) or as a daily preventive. Since I have (had!) migraines every day, I hoped for both. Not only did I experience diminishing returns of acute relief, I never noticed a preventive effect. Stopping it did not increase my migraine frequency, severity or duration.
I’ve heard from about a dozen of you who tried the Cefaly. No one reported relief even as significant as I had early on and half couldn’t use the device because the sensation in their foreheads was unbearably painful. The Daily Headache readers tend to have chronic and/or severe chronic disorders, so we’re unlikely to be a representative sample. Maybe it’s less effective for people with more severe headache disorders or our propensity toward more significant allodynia (sensitivity to touch) makes it more painful than normal. (If you’re worried it will be painful for you, see if someone you know has a TENS unit you can try. The Cefaly is different than a standard unit in its electrode shape and preset programs, but you’ll get an idea of what it feels like.)
Do I rescind my recommendation? Somewhat surprisingly, no. As long as it’s in your budget (it is returnable, but you’ll be out shipping to and from Canada and a 20% restocking fee), I say go for it. We all respond to different treatments and several headache specialists have told me that even a 10% response rate in early research is encouraging. If you want to explore nerve stimulation without invasive surgery, want a drug-free treatment or haven’t had much luck with standard treatments, the Cefaly is, at the very least, worth a try.
I still have mine and will try it again soon. I’m hopeful that a few months without it will be a sort of reset.
How I’ve felt on a bad migraine day the last few months is better than I used to feel on a good day. In the fall, I wrote a bleak post describing what a good day looks like. Seeing how little I got done on a good day (what I now know was a great day for how I felt then) left me so downtrodden that I didn’t post it. Now that I’m feeling better, I’m ready to share it.
November 9, 2013
Friday I enjoyed four hours of level 3 to 4 head pain and a surge of energy. I cataloged everything I did in those four hours in an effort to illustrate what I mean by a “good day.” It’s dismal.
- Bought two bags of groceries (drove 12 minutes round-trip). Unpacked the groceries and hung the reusable bags back in the pantry.
- Opened, read, and dealt with six pieces of mail.
- Entered two medical receipts into Excel for taxes.
- Put away the dishes that were drying on the counter. Emptied the dishwasher and put those dishes away. Hand-washed knives, cookie sheets, and water bottles, then set them aside to dry.
- Wiped down a quarter of the kitchen counter.
- Did a moderately thorough cleaning of the cooktop. Took the burner grills and knobs off, but didn’t disassemble the burners. Washed the knobs in the sink.
- Cleared off the rubble that collects on one particular kitchen counter. Found homes for the receipts, post-it notes, Kleenex packets, and other miscellany.
- Did one full load of laundry and ran a small load of shirts that still had stains on them. Draped the clothes from the first load over the dining chairs because the dryer wasn’t drying properly and I didn’t have the wherewithal to clean the outdoor lint screen in the dark. Hung up the four shirts from the small second load.
- Folded six washcloths and put them away.
- Put a stack of folded T-shirts in the drawer.
- Put the remote controls in the bowl on the coffee table.
This is a great day and it’s no more than an hour’s worth of work done in four. On my best days, I might get in eight hours of work; I get no more than half a dozen of those a year.
My house is not large and the clutter wasn’t particularly heavy Friday. Four hours is plenty of time to clean the house from thoroughly, from putting stuff away, to scrubbing all the hard surfaces, to vacuuming and mopping the floors. Instead, my list of accomplishments includes putting away grocery bags because even that is a triumph.
I have vastly overestimated my productivity over these last six months. I’ve said I operate at 50% of my mental or physical capacity on a my best days. Considering that I did an hour’s worth of work in four hours on a good day, 25% seems like a more accurate number.
I’m not telling you this to elicit sympathy or pity, but to illustrate just how vastly chronic migraine can affect a person’s quality of life. Even though my diet-related improvements seem revolutionary compared to days of accomplishing nothing, the improvements are meager quantitatively.
Having a migraine all the time wears a person down beyond reckoning. Even I can’t believe the impact and I live it every second of every day. Maybe that’s because I haven’t wanted to face the truth, maybe it’s because the truth is unfathomable.
I’m so tired of seeing articles announcing a new migraine drug is in development, then discovering it’s an old drug with a different delivery system. These are not new drugs, even though press releases pretend that they are.
The investigation and marketing of these new routes will help patients. Gastric stasis and vomiting can impair the efficacy of a swallowed medication, so being able to bypass these complications is beneficial. Some people who have never gotten relief from a triptan before may find that they suddenly work when taking as an injection, nasal spray, patch or oral film. These are important points, but they don’t add up to something being a new drug.
If new migraine abortives were also being developed and reported, the investigation into new delivery routes for old drugs probably would not bother me. The problem is that I so desperately want new migraine drugs to be in development that these announcements always raise my hopes.
I know better, I really do. And knowing that — what the migraine research landscape looks like — may be the bleakest part of it all.
Children of women who take Tylenol (acetaminophen) during pregnancy have a 37% increased risk of being diagnosed with ADHD and a 29% increased risk of needing ADHD medications over kids whose mothers didn’t take the drug while pregnant, according to a large-scale Danish study. This is a correlation, not proof of causation. The two factors occur together, but they could be entirely unrelated.
Scientifically, a single study showing a correlation should not be a cause for alarm. This is pregnancy we’re talking about, a time when women are extra cautious and extra worried about everything they ingest. As one of the study’s authors said,
“As a scientist, I never want to be alarmist and use one study [to make clinical decisions]. But as a woman, when I see something like that, I would be worried, and wouldn’t take Tylenol during pregnancy any more.”
For most women, this is a fine, if sometimes uncomfortable, option, but having a headache disorder complicates the issue. Not taking any medication during pregnancy could mean months of severe pain and symptoms like nausea and vomiting (which could also be problematic in pregnancy). Women are frequently told that acetaminophen (or occasionally opioid painkillers that include acetaminophen) is the only safe option. What if the safe option isn’t actually safe?
What’s the best choice — a horribly painful pregnancy or the possibility of impaired fetal development from taking medication? Whether you’re deciding if you should take painkillers or triptans, that’s a decision you can only make for yourself. Consider how a medication-free pregnancy would affect your life and talk to both your headache specialist and obstetrician about options. They are likely to give you conflicting opinions; you’ll either need to get them to talk to each other or choose the one you trust most on the issue.
The answer is never simple, is it?
Learn more about the study’s findings: