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Ketogenic Diet for Migraine: Too Much Weight Loss

ketogenic diet for migraine weight lossElementary school is the last time I weighed this little. I’m not bragging, I’m worried. I was at my ideal weight when I began the ketogenic diet for migraine in January. My dietitian wanted me to lose a couple pounds at first to kickstart ketosis. 17 pounds disappeared in two months. I knew I was too thin, but the weight loss seemed temporary and manageable. Until I lost three more pounds in the last couple weeks and crossed from too thin to frighteningly so.

You may be thinking I’m lucky or that this is a problem you wish you had. I expect you’d reconsider if you saw me without a shirt on. My sternum is pronounced and my ribs are clearly countable. I look sick. I do not feel lucky. I feel sick.

Talking about unintentional weight loss is a strange thing. I used to think it was the same as unintended weight gain, just in the opposite direction. Then I gained weight on cyproheptadine and discovered how different the two are. Weight gain is almost always reviled in this culture; weight loss is typically celebrated. I see a skeleton reflected back at me in the mirror, but people keep telling me how good I look.

I am on the ketogenic diet for migraine—that is, I’m on the diet to become healthier. Yet I keep losing weight that I’m trying to keep and am likely malnourished. Neither of these things is entirely unexpected. A less extreme version of the diet is popular for weight loss and it’s well known that ketogenic diets are not nutritionally complete. The surprise is in how much difficulty I’m having managing the diet. I didn’t expect so many different, complex variables. I certainly didn’t expect to drop to a pre-puberty weight.

P.S. I’m working with my dietitian and naturopath to increase my weight and correct nutritional deficiencies. The problems I’m having with the diet are solvable. Right now I’m feeling overwhelmed by how quickly the issues escalated and expect I will be on edge until the numbers on the scale increase.

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Gastroenterologist, Adderall, and Migraine Status

Gastroenterologist & Headache Specialist

I’m sorry to report that I didn’t learn much from the gastroenterologist (I know many of you were eager to hear something that might help you). He doesn’t think it’s a functional GI problem, but is a neurological problem. He said he’d be willing to do the tests if I wanted them. I went in thinking I’d do them no matter what he said; now don’t think I will. After four years of exploring other avenues, I am inclined to agree with him that the issue is neurological. I asked about using preventive migraine meds that would target the neurotransmitters and hormones that are released at the start of digestion. He shook his head and said he was sorry that he couldn’t help with that. I asked my headache specialist the same day and got more information, but still the same outcome—it is impossible. He said that the body is flooded with neurotransmitters during digestion. It would be impossible to pinpoint which one or ones are problematic. Even if we could, it’s unlikely there are drugs that work on those neurotransmitters.

My headache specialist did confirm that there’s a small set of people who have migraine attacks triggered by eating anything. I told him that it almost seemed reasonable to stop eating for a couple weeks. He told me about another patient whose migraine attacks are triggered by eating—she wound up in inpatient treatment for eating disorders because she was so afraid to eat. He also said that she’d been in the week before me and was doing great. He couldn’t remember what drug she was on, but was going to look into it for me. I’m about to call the office now and will report if I get any information.

My chart notes from the headache specialist say, “I told her that it is important that she obviously continue to eat, and that if we find the right preventive regimen she will be able to eat without triggering an attack.” It summarizes much of the appointment. He also made it clear that he understands that my case requires straying way off the path of typical preventives. We’ve been off that path for a long time, now we’re on the verge of proceeding as if there were no path at all. He prescribed Celebrex and Adderall for preventives (more on that in a minute). And, if those don’t work, we’ll try monoamine oxidase inhibitors. MAOIs used to be used a lot for migraine preventive, but require strict adherence to a restricted diet to avoid a life-threatening reaction. Good thing that my ability to adhere to such a diet is so well-established. That drips with sarcasm, as it should, but I’m game if MAOIs are effective for me.

Adderall

What those of you with fatigue want to hear about is the Adderall. My headache specialist has several patients who have had a reduction in migraine attack frequency on stimulants. I tried Ritalin a few years ago. It wasn’t an effective preventive for me, but it gave me energy… for a week. Then it did nothing. I’ve been on the Adderall for just over three weeks now. Whether it’s working as a migraine preventive is still up for debate. What it is doing is giving me enough energy that I’m not glued to a horizontal surface all day every day. It’s not giving me crazy amounts of energy, more like returning me to my energy levels on non-migraine days in 2014. I’ve been terrified that it wouldn’t last, so I’ve been cramming in as much activity as possible.

Three weeks in, it feels a little more like the energy is here to stay, but three months is the critical point for me. I’ve had some drug side effects last that long, then disappear. I don’t think my energy is a drug side effect, but I still can’t believe that it will last. I have had slightly less energy in the last week than in the two previous weeks, but I’m holding out hope that’s diet-related.

I expect Adderall is probably only providing me with symptomatic relief. I’m OK with that, but am hopeful it will also work as a migraine preventive.

Why I’m Not Writing

For more than a year after I started taking DAO, all I wanted to do was write. I had a million other things I wanted/needed to attend to, but writing was my priority. Now it’s like pulling teeth. It doesn’t feel like I have cognitive dysfunction in day-to-day life, but trying to write tells me otherwise. It’s not enough to interfere with decisions or driving, or even show up in most conversations. But it’s enough that I can’t do my highest levels of mental activity—like reading medical journal articles and writing.

I’m using my physical energy to do the other thing I’ve daydreamed about: work on my house. I’m in the middle of painting the kitchen cabinets and have enlisted Hart’s help in moving furniture. I’m planning which cork flooring I want to replace the bedroom carpet with and choosing color schemes. I’m thinking about which plants will fill our yards. I don’t know how much we’ll be able to do right now (either ourselves or hiring someone), but at least there will be a plan in place that I can execute even if I’m laid up.

Migraine Status

I still have a migraine attack every time I eat, but I only have to take Amerge to stop it (not Midrin, too). The migraine doesn’t knock me out within five minutes of eating; sometimes I can wait an hour after eating before taking the triptan. And the triptan keeps me from feeling anything more than minor migraine symptoms before it does the trick. It seems ridiculous that this feels like progress, but I’ll take what I can get.

I’m still on the same diet—eating anything else results in a migraine that drugs don’t eliminate. Those migraine attacks aren’t too bad, but do sap my energy for the next day or two (even with the Adderall). Since I don’t believe the Adderall will last, I’m not willing to waste a single day. I’m also still eating only once a day. That’s so I only have one migraine a day and can keep an Amerge in reserve in case another trigger, like odors, set another attack in motion. Tolerex (the feeding tube formula) became a trigger this spring; I’m planning to try it again in the hope that a two-week reset will help reduce my food sensitivity.

The Adderall or Celebrex could be responsible for my reduced sensitivity, but stopping the probiotic might be, as well. I have no doubt that my GI symptoms were caused by the probiotic and there’s a good chance my renewed sensitivity to all food was, too. I stopped taking it in late August and my GI symptoms have been slowly resolving since then (they are almost completely gone). It would make sense that I have a gradual reduction in migraine frequency as well. It took three months of a ridiculously high dose of probiotics for the GI symptoms to start and six for the food sensitivity to return in full force. So I tell myself it took six months to get into this mess, it will take at least as long to get out of it.

I’m Not Gone for Good

I’m not sure how much posting I’ll be doing for a while, but will be back soon(ish). I hope to at least respond to comments in the next few weeks. I miss interacting with you all and I miss writing. I am, however, pretty happy with how my kitchen cabinets are coming along.

(I don’t have the brainpower to edit this post. I appreciate you muddling through the typos and hope it makes sense.)

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Mamma with Migraines

This is a reader-submitted story.

1. My diagnosis is: Chronic migraine with aura
2. My migraine attack frequency is: Usually a few a month, but it can vary to up to 20 days straight
3. I was diagnosed in: Childhood
4. My comorbid conditions include: Extreme visual disturbances, body and face numbness, loss of speech and mobility and body weakness and fatigue
5. I take no medications/supplements each day for prevention
, just dietary and weather awareness. 2 medications/supplements to treat an acute attack
6. My first migraine attack was: very young
7. My most disabling migraine symptoms are: loss of speech and mobility and visual disturbances
8. My strangest migraine symptoms are: food cravings and toothaches
9. My biggest migraine triggers are: light, weather and food containing nitrates
10. I know a migraine attack is coming on when: my skin becomes incredibly sensitive and I feel a band of pressure around my head. Also when I have no desire to eat the day before.
11. The most frustrating part about having a migraine attack is: having to give up my daily activities
12. During a migraine attack, I worry most about: My kids seeing me in a state of weakness, where I can’t function for them.
13. When I think about migraine between attacks, I think: No, no, no, no.
14. When I tell someone I have migraine, the response is usually: Oh, I know someone who gets them too.
15. When someone tells me they have migraine, I think: You poor soul. I wish I could take that burden off you.
16. When I see commercials about migraine treatments, I think: I hope that solution works for someone!
17. My best coping tools are: quiet, darkness and an icepack.
18. I find comfort in: Knowing I’ll be ok once its over.
19. I get angry when people say: “it’s just a headache, take a (insert medication of choice here)”
20. I like it when people say: Is there anything I can do?
21. Something kind someone can do for me during a migraine attack is: Let me rest, but check up on me.
22. The best thing(s) a doctor has ever said to me about migraine is: …. still waiting.
23. The hardest thing to accept about having migraine is: That my son has inherited this from me.
24. Migraine has taught me: Slow down, or a migraine will do it for you.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: Hang in there!!!
27. The people who support me most are: My sons, husband, best friend and neighbor (who’s BF also suffers very similar migraines as I do)
28. The thing I most wish people understood about migraine is: It’s not a headache. It can be scary when it mimics other conditions such as a stroke.
29. Migraine and Headache Awareness Month is important to me because: Others need to be aware of just how prevalent this condition is. And I take solace in knowing I’m not alone.
30. One more thing I’d like to say about life with migraine is: Please be sympathetic to those who suffer with this. It can be scary and difficult to accept something that can knock you out at a moments notice, or hang around just past your consciousness for days.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 Things About My Life with a Complicated and Intractable Migraine

This is a reader-submitted story.

1. My diagnosis is:
Complicated Migraines, and an Intractable Migraine

2. My migraine attack frequency is:
Frequency and duration is it’s non-stop, one hundred percent of the time. The level varies by hour or day(s).

3. I was diagnosed in:
In 1997, I was diagnosed with Migraines and given my first rescue perscription. In 2001, I was diagnosed with Chronic Migraines and given both preventative and rescue perscriptions. In 2002, I was diagnosed with Complicated Migraines, an Intractable Migraine, and Severe Food and Environmental Allergies to everything I was tested for. In 2004 and 2005, I was diagnosed with multiple TIAs due to allergic reactions to triptans.

4. My comorbid conditions include:
Severe Cognitive Disfunction, four Severe TIAs, as well as seven other TIAs.

5. I take 3 rescue and 1 anti-nausea medications per day, along with using a Cephaly. I have an ongoing regimine of Botox injections, double rhizotomies, and nerve blocks per year. I have also tried steroids, a capsaicin trial, and have used an endless list of rescue and preventative compounded medications.

6. My first migraine attack was:
Unsure. I began having severe enough headaches at the age of 12 to where I would have to lay down. By the time I was in my early 20s, I was laying down frequently and taking a lot of OTC meds, often switching between Tylenol and Excedrin due to their ineffectiveness.

7. My most disabling migraine symptoms are:
Head pain, nausea, vomiting, weakness, fatigue, numbness, tingling, limbs going cold, light/scent/sound sensitivity, cognitive disfunction, loss of vocabulary, memory loss, forgetfulness, vertigo, loss of appetite.

8. My strangest migraine symptoms are:
Craving salt, craving sugar, inability to hold a thought or conversation, inability to comprehend, uncontrollable falling/jerking/diving, inability to speak, constant leg moving or kicking, limbs going cold, eye pressure and loss of vision.

9. My biggest migraine triggers are:
Food (65 identified foods/dirivitives), Propaphal, medication fillers, every single OTC med and vitamin, weather, scents (candles, perfumes, pestisides, fertilizer, cigarettes or cigars), light (sun, fluorescent, flashlights, eye doctor tests), sudden movement (jerking, sneezing or coughing), sudden temperature changes, exercise, moisturizers, cosmetics, hair care products, dyes.

10. I know a migraine attack is coming on when:
I always have a migraine, but I know when I trigger higher if I inexplanably jerk and lose my balance, become nauseated, my limbs go cold, or my face feels numb.

11. The most frustrating part about having a migraine attack is:
Having to cancel events that we’ve planned and very much looked forward to, having to eat the cost of tickets. Being helpless.

12. During a migraine attack, I worry most about:
How many continuous days will I be bed bound, my husband, will I have a stroke, will I have an anneurysm caused by my two identified “areas” rupturing, when is my next PM appointment, will I get too sick to make it to the ER?

13. When I think about migraine between attacks, I think:
Wow! I’m well enough to make a meal or do a load of laundry… How much time do I have?!!

14. When I tell someone I have migraine, the response is usually:
You should try xx; it really helps my “aunt”.

15. When someone tells me they have migraine, I think:
Oh Lord! I’m so sorry… How bad is theirs?

16. When I see commercials about migraine treatments, I think:
A) That’s money-making garbage… 🙁
B) Yuck! :O I’m so allergic to that!
C) I was one of the original guinea pigs for that before it was FDA approved.

17. My best coping tools are:
My understanding and accommodating husband, laying down, silence, the hope it may be better next week.

18. I find comfort in:
My husband, God’s promises, my PM isn’t going to abandon me.

19. I get angry when people say:
“You should try ‘this’.” Ugh… (Thoughts: Yes, yes… I’ve tried “that” numerous times, and the side-effects and level 10+ migraine is memorable).
“Excedrin Migraine…” (Thoughts: I’m a little beyond that. The fillers alone in that junk med would put me in the hospital).
“I know a great doctor.” (Thought: So do I, in fact, I’ve been treated by that great doctor and after time, he/she told me there was nothing more they could do for me).
What I’d really like to do is inhale and roll my eyes! 😉

20. I like it when people say:
I’m so sorry… I know how dibilitating that can be. I’ll be praying for you.

21. Something kind someone can do for me during a migraine attack is:
Sitting quietly with me, getting and handing me my meds, keeping track of when I can take my next dose, keeping track of my max amount of meds per day, offering me ice packs because I forget how much they’ve begun to help, preparing a simple single ingredient food for me, bringing me water, leaving me alone but checking up on me frequently, letting me sleep, not expecting me to engage in conversation, letting me ramble on when I get one of those weird migraines, being patient when you need to ask me something, understanding that I’m helpless.

22. The best thing(s) a doctor has ever said to me about migraine is:
Educating me about a severe, ongoing elimination diet.

23. The hardest thing to accept about having migraine is:
I don’t have a productive life, I may never have my career back.

24. Migraine has taught me:
How fleeting life is, just how quickly years pass, get as much done/accomplished in a good hour/afternoon as I can, and how lovely life is outside the house.

25. The quotation, motto, mantra, or scripture that gets me through an attack is:
Revelations’ all tears shall be wiped away.

26. If I could go back to the early days of my diagnosis, I would tell myself:
Take more weekend trips, make as many memories as you can!

27. The people who support me most are:
My husband, my daughter, my Pain Management Doctor and his PA.

28. The thing I most wish people understood about migraine is:
A migraine is NOT a bad headache. They’re not even in the same realm.

As a long-term migraineur, I LIE A LOT, partially for your benefit, and because I don’t want to be judged, abandoned, or offered advise by others.

Realize, on my very, very best hours/days, I still have a migraine. I’m always faking how well I’m feeling/doing because I realize I’m a burden and just want to have a level of normalcy. When I’m out with you and get quiet, I’m pushing and struggling hard so we can just do something fun.

During my worst weeks/months/seasons, just love me and help me. Realize, I’m just not myself, emotionally or physically.

29. Migraine and Headache Awareness Month is important to me because:
Unless you have experienced a migraine, you couldn’t possibly understand all of the complex neurological side effects that go along with it.

30. One more thing I’d like to say about life with migraine is:
When a planned event has to be canceled because I’m too sick, realize I am so disappointed that it’s happened AGAIN, that I am sorrowful that it’s impacting your life, as well. I can get depressed, am saddened and know your quality of life is driven by mine. I beat myself up over that.

Besides going to doctor appointments, if the only time we get out each month, please let it be to go to church. I need it to continue what has become my unfulfilled and painful life.

When I talk about life after migraines, let me ramble on with all my hopes, goals and dreams. When I am able to think while bedridden, in pain and sick, these are the things I think about doing with you, family and loved ones.

Much love and eternal gratefulness to my yummy hubby. <3

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 Things About My Life with Chronic Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine with and without Aura
2. My migraine attack frequency is: I am almost never without some hint of migraine, from the shimmering lights, tingling and numbness or ringing ears that signal its beginning, to the exhaustion that tail behind.
3. I was diagnosed in: I was first diagnosed with Basilar Type Migraine in 2007. At that time my migraine was episodic in nature. I was diagnosed with chronic migraine in 2014, although I think my migraine began transforming from episodic to chronic in 2010.
4. My comorbid conditions include: Fibromyalgia, Chronic Fatigue Syndrome, GERD, IBS and Anxiety.
5. I take 10 medications/supplements each day for prevention and 5 medications/supplements to treat an acute attack. I also receive botox treatments for prevention that involve 32 injections to the face and neck. During an acute attack, I often need intramuscular injections of toradol, which I am currently not able to obtain from local pharmacies. The shortage of this medication has impacted my quality of life significantly. I am not able to access the single most successful acute migraine treatment, a class of drugs called triptans because the neurological symptoms I experience make it dangerous to take them. As a result I sometimes receive nerve blocks, which require injections of steroid and analgesic to my head and neck in a similar pattern to the botox (over 30 injections). When my migraines are most extreme I require a 3-5 day IV infusion “cocktail” including magnesium, steroids, toradol, a medication to control nausea and benedryl in order to return to my typical levels of pain. I never expected to be a home healthcare patient at 27.
6. My first migraine attack was: My first full blown attack occurred at 18. It was absolutely terrifying. Looking back though, I believe that I experienced abdominal migraine during childhood, as I often experienced intense stomach pain and vomited without reason. I still have have GI issues, but they currently present as GERD and IBS.
7. My most disabling migraine symptoms are: Visual aura/Vertigo that occurs even when I am relatively pain free. This makes it difficult to complete simple daily tasks such as driving safely.
8. My strangest migraine symptoms are: Numbness & Tingling, & Persistent weakness on the right side of my body. MS runs in my family, and I had to have several diagnostic tests to ensure this was migraine related and NOT multiple sclerosis.
9. My biggest migraine triggers are: The Weather, Not Getting Enough Sleep, Skipping Meals, Alcohol, MSG, Artificial Sweeteners, Processed Meets, Aged Dairy (Cheese, Yogurt etc…)
10. I know a migraine attack is coming on when: My neck hurts and I am seeing shimmering lights. Either one of these things independently could just be a part of how I live my daily life, but if both occur, I am going to need to lay low.
11. The most frustrating part about having a migraine attack is: the time it robs from me. I really would prefer to be productive in the traditional sense.
12. During a migraine attack, I worry most about: What I should be doing that I am not accomplishing.
13. When I think about migraine between attacks, I think: I spend a lot of time thinking about what I can do to improve my overall health and prevent the next lurking attack.
14. When I tell someone I have migraine, the response is usually: “I’m sorry.” Still, I’m not sure most people fully understand the impact that migraine can have on someone’s life when it is chronic. It has had a major impact on my life and my husband’s l(it robs him of so much too).
15. When someone tells me they have migraine, I think: This is someone who understands my pain.
16. When I see commercials about migraine treatments, I think: If only it were that simple.
17. My best coping tools are: my husband who is incredibly supportive, my headache specialist who is VERY responsive, and homemade icepacks which are lifesavers
18. I find comfort in: distractions such as good books and good TV and movies when I am feeling well enough to engage with them.
19. I get angry when people say: “You’re too young to be sick” or “I know someone who used to have migraines until they gave up cheese or chocolate or wine” I know they mean well, but it is so frustrating after years of researching and trying just about every migraine specific diet I can find!
20. I like it when people say: I see how hard you’re working to keep up. I’m not sure this is always easy to see, but its almost always the case.
21. Something kind someone can do for me during a migraine attack is: Offer to help with something that needs to get done.
22. The best thing(s) a doctor has ever said to me about migraine is: Your symptoms are real; I believe you. Let’s work on creating a treatment plan that will reduce the severity and frequency of your pain.
23. The hardest thing to accept about having migraine is: It has no cure. Migraine can be managed effectively, although I’m not there yet. I continue to strive for that, but still it will always be a part of my life.
24. Migraine has taught me: To drink in the days and even the moments when I feel well. I appreciate these times in a manner that I never would have otherwise.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Breathe.
26. If I could go back to the early days of my diagnosis, I would tell myself: FIND A HEADACHE SPECIALIST NOW. Do not pass go. Do not collect $200. Just do it, you will thank me later.
27. The people who support me most are: My husband, who is my greatest supporter and my coworkers who are incredibly understanding.
28. The thing I most wish people understood about migraine is: It can truly be disabling. Also, migraine with Aura can effect every part of the brain and present with nearly every neurological disturbance possible from visual changes, ringing in the ears, changes in sensation, to complete loss of consciousness and/or quadriplegia.
29. Migraine and Headache Awareness Month is important to me because: It is a chance to share my truth, and hopefully help others to understand a little bit more about the reality of living with chronic migraine.
30. One more thing I’d like to say about life with migraine is: It is still a life, just a different one from the one that I had expected. What I mean by this is that I have to be much more mindful of how I choose to spend the precious time when I am feeling well. I have given up on living a “normal” life and instead accepted the beauty of living to the fullest when I am able. Still, I continually seek to find strategies to increase the amount of time that I am feeling well.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.