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Sleep episodes… migraine related?

  • By Kate12

    Hi there,

    I have experienced an endless variety of symptoms over the last two weeks and both my family doc and neurologist have concluded that I have a “migraine disorder” along with some anxiety symptoms mixed in (understandably.) But my latest symptom is a weird one that neither doctor has come across before. They’re thinking it’s likely migraine related but I’m not sure. So I was wondering if anyone else has experienced anything like this, or if it seems plausible that it is in fact migraine related. I get these episodes while I’m sleeping (or trying to sleep) where it feels like the top of my head is electrically charging up and then it releases the charge or energy into my body, at which point I typically see a visual pattern (dots, geometrical shapes, lines or fuzzy stars.) Then my body usually feels a bit tingly and then I sometimes get a cooling sensation which replaces the tingling. When I feel that cooling sensation I know that episode is over. But then it happens all over again when I start to fall asleep again (the actual act of falling asleep seems to be the trigger for these episodes.) Does anyone have any similar experiences or thoughts to share? My family doc doesn’t think these are seizures because if they were I wouldn’t be aware they were happening.

    Thanks.

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  • By Nancy Harris Bonk Moderator

    Hi Kate12,

    Thank you for being part of the Migraine.com community and discussion forum. Let me see what information I can give you that may help.

    I’ve not heard of this, but it certainly could be migraine with aura. I’m glad you’ve been discussing this with your doctors. Many people think migraine aura is only visual, but that’s not true. Migraine aura symptoms can include but are not limited to visual issues such as wavy lines, sparkling lights, temporary vision loss and many others. Other aura symptoms can include body numbness and/or tingling, trouble finding words (aphasia) and sensations that are normally not painful may become painful, this is called allodynia. We have more information on these symptoms in this article;
    https://migraine.com/blog/i-had-no-idea-that-was-a-symptom/.

    Hopefully others will be along shortly to share their experiences with you.

    Please keep me posted on how you are feeling,
    Nancy

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  • By MissCottonHead

    I’ve experienced something similar several times. It started two years ago with waking up at a sudden and feeling an electrical charge move like a wave through my brain from the front to the back. It totally freaked me out, I thought I was having a TIA. After it subsided I felt a shiver go down through my body and I felt really cold for a while.

    Other nights I wake up with the feeling of a charge building up at one spot in my brain, which ends within minutes with a kind of ‘explosion’, which doesn’t really cause an audible sound but more of a sensory ‘bang’. Even though (or maybe exactly because) I know what to expect by now, my body still jolts, like I’m getting an electrical shock.
    I’m sometimes afraid to go to sleep because of this, it’s an awful feeling, like something in my head gets damaged. Which is probably not the case though, since a recent MRI didn’t show any anomalies.
    So, yes, I think we can shake each others hand in this, and it’s probably one of those many weird migraine moves.

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  • By Nancy Harris Bonk Moderator

    Hi MissCottonHead,

    Thank you for sharing your story with us and being part of the Migraine.com discussion forum. Migraine can certainly be frustrating, exhausting and debilitating. I am happy to hear your tests didn’t reveal anything.

    One of the things about migraine is that there are no blood tests or image scans available to obtain an accurate diagnosis. A diagnosis is made after the doctor gives us a complete neurological exam, goes over our symptoms and discusses our medical history and our family’s medical history. We have more about that here; https://migraine.com/blog/migraine-management-essential-diagnosis-and-doctors/.

    I wonder if its time to seek out the expertise of a true migraine/headache expert. These doctors are different than neurologists in that they are board certified in headache medicine whereas all neurologists are not. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different disorders such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache experts treat one condition all day, every day, migraine and headache. Let me share this information with you on how these doctors are special and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope this helps, please keep us posted on how you are feeling,
    Nancy

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  • By MissCottonHead

    Hi Nancy, thanks for your reply. I did see a headache specialist last January. He is also an MS specialist, that’s what brought me to him in the first place. I had the MRI to check if MS was the cause of my complaints.

    If you are interested, here is my experience with a ‘headache specialist’:
    The first consultation went OK, but when I returned after a few weeks for the evaluation of the MRI, it all went a bit odd. He had lost the MRI pictures and radiologists letter. His secretary had phoned me about this the day before with the request to drop my copy off; a 1 hour drive. Which I declined and in stead promised to bring it in one hour before the consultation.
    After waiting for one and a half hour he called me in and told me he didn’t find the time yet to look at my MRI. He quickly flipped through it and casually told me I didn’t have MS (… apparently a detail…) but silent migraine, and he also explained to me I have two cerebral hemispheres, of which one controls the opposite of my body etc. etc., which is a bit odd since I told him previously I am a psychologist…, wrote a prescription and handed over a little diary which I had to keep for three months.
    I told him I already identified my triggers by using an app for several months and getting an allergy test done (which confirmed my triggers) and that I was so ill that I wasn’t able to work for more than a few hours a day and couldn’t wait three months for the evaluation of the meds. He got annoyed and told me he would call in two weeks how things were going.

    Before I left I asked if the meds had any side effects and he said I could use them 10 days a months and during wouldn’t be able to drive. I said this was impossible for me, since I need my car for my work and that I have serious complaints daily. He then said that “people with migraines don’t want to drive anyway” (?!) and suggested other medication, something that lowers blood pressure. I told him I already suffer from very low blood pressure (85/55) and that it didn’t seem sensible to lower it even further. He then told me it wouldn’t be a problem.
    Next day I checked with the pharmacy and they strongly discouraged taking the prescribed medicine, since it could lead to fainting and other serious complaints.

    After two weeks he called and asked how things were going. I told him about the pharmacy and that I emailed a complaint list two days before (this seemed sensible since I had the impression he forgot all I told the first time). He ignored the remark about the pharmacist and said he didn’t receive the list.
    By then I was completely done with this man, I hung up and haven’t spoken to him since.

    I’m quite hesitant to start over with another ‘headache specialist’ since this guy is supposed to be the regional specialist, working at a specialized headache department of a hospital.

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