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Diagnosis of Migraine & Headache Types

Celiac disease masquerading as Migraine / Narcolepsy

  • By Brian in TN

    While researching sleep disorders and their relationship / co-morbidity with migraines I ran into an interesting blog: http://eawake.blogspot.com/2010/10/narcolepsy-and-chronic-migraine.html. Has anyone else had any luck eliminating migraines by treating other diseases? I’m willing to try a gluten free diet to see if that helps but I’m not at all sure I’m willing to risk the diagnosis of narcolepsy due to the legal implications. While each state is different, here in TN any doctor can have your drivers license suspended for epilepsy / any condition which might result in a loss of control of a vehicle. Some blog entries suggest it can be nearly impossible to regain your license and I’m required to operate powered industrial trucks on my job so the wrong diagnosis / Dr could result in a complete and terrifying change in my financial situation that I’m not currently prepared to face.

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  • By Katie M. Golden Moderator

    Brian,
    Trying a gluten free diet could be a good idea. I did it as well. My doctor said that you’ll know if it is helping within 2 weeks of cutting out gluten. Gluten-free seems to be a big fad right now and there’s only a small percentage of people who actually have Celiac’s disease. However, trying this diet shouldn’t harm you in any way. Just try to journal any changes that you notice to help you decide if it is working for you.

    As for the Narcolepsy- that can be a huge trigger for Migraines. Any time your body is not getting the proper amount of sleep it can mess with you Headaches. There are some meds that can help to manage narcolepsy, such as Xyrem, but some can have serious side effects when taken with certain Migraine drugs. I understand that you have a huge issue in persuing this diagnosis due to your job. But I encourage you to talk to your neurologist- this could help you big time!
    -Katie

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  • By Brian in TN

    Thanks Katie,
    I’m going to finish off my feverfew / butterbur trial this month and then go gluten free for July and possibly August. Now I just have to decide if I want to trial Moringa Oleifera at the same time or wait and trial separately. I’m thinking if I haven’t noticed a real change by August 1 I may stay gluten free while trialing the Moringa. The best deal I’ve found on the Moringa is a 75 day supply which sounds just about right. If the Moringa doesn’t help then it’s time to insist the VA send me to a neurologist to discuss the migraine / narcolepsy issue. An online survey I took said I had several indicators for narcolepsy especially being able to drop into REM sleep in under 1 minute when exhausted and sleep paralysis which my mother and I share. Mom also has occasional ocular migraines so this could be the genetic double barrel 12 gauge!

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  • By Katie M. Golden Moderator

    Brian- let me know how the Moringa Oleifera goes. I’ve never tried it. You seem to have your next steps planned out which is a great thing!

    And yes, you should definitely talk to a neurologist about the Narcolepsy. Keep me updated!
    -Katie

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  • By Brian in TN

    Thanks Jamie,
    My improper entries into REM sleep, which may be narcolepsy, have only occurred when I was laying flat or reclining in a chair almost flat and only when I’m exhausted – awake more than 20 hrs. The frightening bouts were during a month long period of 20+ hr days with only 3-4 hrs sleep. Most of my sleep paralysis is when I’m waking up from a nights sleep, so no possible driving issues there. While I have driven while impaired when I was young and stupid, I haven’t done any driving while intoxicated, medicated or exhausted in decades, so I don’t feel I present any risk to anyone else. Losing my license wouldn’t be an insurmountable obstacle to me as I only live 3 miles from where I work and have cycled / walked it quite often. I’m basically to the point now that I hope my employer will work with me, I can accomplish 99% of my job without driving anything, but if not I’ll find some way to adapt / overcome. I’m definitely not going to put anyone elses health at risk to keep any job.

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  • By Brian in TN

    I had an EEG performed in Jacksonville, FL by a civilian neurologist roughly 5 years after my worst episodes (18 years ago) with no abnormalities revealed (the technician claimed I fell asleep, but I must have just dozed, I don’t remember any transition into / out of sleep). The neurologist also insisted on a cerebral angiogram to ensure I wasn’t suffering from an aneurism. Oh by the way, he told me he never prescribes Elavil (amitriptyline) to any home with children, or where they visit often, due to the lethal complications of Elavil in children, and yes I had 2 at home at the time, Navy never bothered to mention that. The VA sent me an “At Home DIY” sleep study kit that had me strap a headband with electronics that guaranteed I only had very mild sleep apnea, during normal sleep, no requirement to stay up, etc. I need to get in contact with the VA ENT in Murfreesboro to try to get a real sleep study done. Maybe, based on the fact that Nashville VA has the longest waiting list of any subregion in the US, I can be annoying enough to force the VA to farm me out to a civilian neurologist / headache specialist to get some real care.

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