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Survival Mode

survival mode“I’m so sorry to read on your blog about the setbacks… It sounds like you’re in survival mode,” my friend J. texted after I posted Gastroenterologist, Adderall, and Migraine Status on Nov. 2.

I wonder how she got that. I’m doing pretty well right now, I thought. A week later: J. was totally right. I’m barely hanging on.

I’d written about how great I felt on Adderall and was hoping the effects of were not dwindling. They were. After a three-week energy boost, I returned to about 75% of where I was before the June infusions. This might seem disappointing, but it was a huge improvement. (The fatigue was so severe in August and September that I almost bought a walker to get around the house. Walking to the dining table took so much energy that I ate on the kitchen floor. I tripped over the slight ridge in a slate floor tile because couldn’t lift my foot high enough to clear it. I was living with crippling fatigue, yet the severity was still nearly unfathomable. So, even though I was no longer super-charged, I was pretty happy with the result.)

The Adderall also keeps my pain from getting above a 4 most of the time, even during a migraine attack. I’m grateful for this, but the pain has been the least of my migraine woes for the last couple years. (I never thought I’d say that!) Even with Adderall, I am severely fatigued during an attack. The fatigue continues to be even more disabling for me than pain at a 6 or below.

This up-and-down cycle of fatigue (plus cognitive dysfunction) has been going on since early November. I can’t predict how severe the migraine attack that follows eating will be, even when it’s a food I eat frequently. I never know how much energy I’ll have when I wake up or how long it will last. If a few good days follow tweaking something in my regimen (like increasing my magnesium or Adderall), I’ll think I’ve figured it out… then the benefits will dissipate.

I was eager to start a ketogenic diet January 3. It’s a high-fat, low-carb diet that’s used to treat epilepsy in children. (It’s also a trendy diet for body builders and people wanting to lose weight, but the version for epilepsy is a lot higher fat and lower carbohydrate.) The ketogenic diet seemed like a drastic change that could really make a difference. I saw no improvement. As January wore on, the migraine attacks seemed to get even worse. I was demoralized and panicked. The ketogenic diet was my trump card; I had no idea what to try next.

Ten days ago, the dietitian changed my meal plan to increase the fat and decrease the carbs. It’s brought some remarkable, but sporadic, improvement. I still have to take an Amerge and two Midrin every time I eat, but some days I barely notice the migraine at all. Then I’ll do something reckless, like try a vitamin D supplement(!), and have a downturn for several days. I’ve felt really good on about half of the past 10 days. Yet the progress feels substantial enough to have restored my hope.

I’m back to feeling like maybe the ketogenic diet will make a difference. The dietitian said it can take three months for the metabolism to fully shift, so I am hopeful more progress is ahead. Also, there’s room to increase the fat and decrease the carbs in my diet, which could mean even greater improvement. The fatigue is a drag and I wish I could think more clearly, but I’m optimistic that I’m on the right track.

The last year has frayed my optimism, leaving me with tatters that I feared could not be rewoven. Slowly, slowly I’m finding the threads and knitting them back together. I can’t say I’m out of survival mode, but I no longer feel like I’m in constant crisis. With my hope and optimism returning, I feel more able to cope with the setbacks that are sure to come.

12 Responses to Survival Mode

  1. Elizabeth says:

    Oh Kerrie. Of all the many many bloggers, advocates, and migraine warriors I have met online over the past several years, your case is the most complex and disheartening. Your migraines take that familiar “everything is a trigger” feeling we all get and trump it, to requiring a triptan with *every meal.* My own hurting heart goes out to you in all your ingenuity (creating the TheraSpecs that keep me comfortable and the first blog which truly inspired me) and strength and your will to keep pushing forward, even if you need a walker to do so. *Keep on keeping on*, Kerrie. We are all pulling for you. 💜

  2. Virginia Smyres says:

    So many loving thoughts are being sent your way. As your mother I would eagerly shoulder any ailments or difficulties if only I could. You are a fighter, you are a survivor and you have helped many other people in their struggle with migraine. Much love and many kisses, Mom

  3. Amy says:

    Kerrie, I echo what Elizabeth said. Your blog posts help me so much, and I appreciate your honesty and candour. I can’t imagine suffering like you do, and I admire your courage and determination. I’m also glad to see that you have such a loving and supportive mom in your corner! ❤️

  4. Tina Aston says:

    Dear Kerrie
    I pray you improve and get back some quality of life, that so many others take for granted.
    You are a shining light in the dark world of migraine as you give hope and knowledge to others.
    Kind regards
    Tina

  5. Alison says:

    Sending you gentle hugs and strong hopes that you find more relief on the ketogenic diet. Your words on your blog are so important to me – thank you. You provide research and information about different methods to try to treat my pain and fatigue – a void I just can’t physically and cognitively fill right now, and I don’t feel so alone and isolated with this awful disease because of the community on these pages. Know that we care and are hoping for better days!

  6. Ellen G. says:

    Oh Kerrie, I hate it for you. But please know that your blog is a valuable resource for so many others. I’m sure you thought of this, and I can’t see any way around your circumstances, but some of your fatigue may simply be that you’re not getting the balanced nutrition your body needs because you must be so limited in your diet. Have you consulted a nutritionist? If you have please forgive this feeble attempt at help. If you haven’t, consider it, but do your customary thorough research because there are a lot of quacks out there. Prayers that you find your answer!

  7. Emma says:

    If this can be of any comfort, I talked to my neurologist last week and he is part of one of many teams of researchers working on a new drug (linked to calcitonin gene-related peptide). He was super excited about the results and believed we would have access to the new drug in less than two years. It seems to be the first real step forward in migraine research since the development of the triptans and botox. I think there is hope. We need that hope to go on, don’t we?

  8. Alison says:

    Thanks, Emma, for this information particularly about timing of this new kind of migraine drug. I’ve been following the research on this medication, and I’m hopeful! Wish it were going to be available sooner, but, hey, I’ve had migraines for nearly 40 years so what’s another two year wait for potential relief!! Also, wondering where your neurologist is located? I’m in Massachusetts…

  9. Emma says:

    Alison,
    We are located in Montreal. I’ll keep you posted on the timeline of the new drug, if you want, since I see my neurologist quite often (every 3 months).

    • Ellen G says:

      Emma,
      Several others mentioned Canada as a cheaper source of migraine medications but failed to give reliable website information. Being that you’re in Montreal, can you recommend any Canadian Rx websites that you trust? I just had to spend $251.00 for 6 Relpax (gotta meet that deductible first before it gets cheaper!) I think I’d rather pay less out of pocket and leave the deductible for an emergency.

  10. Emma says:

    Ellen,
    In Canada, we have universal health care. However, medications have to be payed by private insurances that are fairly cheap. I have access to unlimited (or so it seems) amount of my migraine medication and they are generally fully covered or for about 85% of the cost by my insurances. For example, every botox intervention costs 425$cad, but I pay only 45$cad. We also have access to a lot of generic drugs, which are much cheaper (but the same quality). I don’t know if you have that access in the US.

    I don’t know of any RX websites in Canada, because I don’t have to use them. If you search on google for rx canada website, you’ll find a series of choices, each with their limitations (prescription, delivery). It wouldn’t feel right to suggest any, but I would be interested in your findings. Good luck.

  11. Anna Pate says:

    I have Trigeneral Neuralgia and have had surgery .
    I go every 2 weeks for thirty trigger points and an epidural every 3 months
    I get 6 immitrex injectors a month – big deal
    I miss my life yoga classes , horseback riding
    We have lived in San Antonio for 5years I have no friends here
    Frustration does not even begin to describe it!
    Thank you for listening
    Oh by the way my Doctor had me try this new med named Zecuity it is a patch you put on for four hours
    A still had a headache B got a chemical burn that had to be sloughed for a week Silverdin and steroids
    I most definitely needed that

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