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Seizure???

  • By shelly

    Just wondering if anyone experiences seizure like episodes? My head pain – which rarely goes away – has greatly diminished over the last couple of months. Typically I’ve had headaches nearly everyday for the past 5 years. Several times a week turning in to a vestibular or more recently ocular migraine. a few months ago completely losing sight in one for two hours, I can mostly function (I don’t have much choice). My husband, neurologist, therapist and a really close friend are the only ones who know how bad it gets. thanks to balance therapy and a little humor, no one sees the vertigo and off balance episodes when i run into walls and the rest has beome so common place it just becomes mind over matter. i dont have the knock you out cant stand it sit in a dark quiet room very often although they do make me cry quite often. Lately the head pain has diminished (not gone away just less severe). It’s been replaced with horrible vertigo and nausea every day from 10-2 occasionally straying to other times of the day. My nuerologist sent me to an audiologist for hearing and balance testing for the fourth time. Again I was diagnosed with Hyperacusis. I haven’t done the vestibular test yet but I suspect atypical vestibular meineres, vestibular hydrops or also known as vestibular migraine – again. I have also begun having horrible muscle jerks all over my body, horrible painful eye twitching with my eyes moving all over the place. I have those moments of total euphoria lasting 20-30 seconds and I all of a sudden feel very fatigued and often fall instantly asleep waking up a few seconds later with out having fallen forward at all. I know it’s only been a few seconds because the letter I was typing repeats itself for a few lines. The fatigue lasts about 2 hours with three or four of those little episodes and then goes away as quickly as it came. I was in the emergency room a few weeks ago because my eye wouldn’t open without a lot of effort and keeping it open was just as bad. I waned to rule out stroke. i had an MRI again which came out normal. My nuerologist suggested testing for seizures and we probably will. I hate to do that as tests generally turn out normal which feels like ‘back to the drawing board’. I would think seizure too except some of the symtoms are not small episodes. All of this seems to be more mild or at least less often with sound cancelling ear buds especially with pink noise. did i mention horrible constipation? Does any of this sound familiar? i’m tired and a little scared of what comes next,

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  • By shelly

    Did he say that it was seizure or aura? My neuro is awesome. She has gotten me so far. She has suggested at one point doing a series of eeg’s to rule out seizure. I didn’t because I didn’t think I would max out my deductible but I did. So I plan on telling her test away now before next year hits. I’m guessing she’ll have me do that in light of the more recent attacks. The only thing that makes me nervous is that if it is seizure, I’m already on on 600mg Lomotrigene a day. I have to go off for three days for Meneires testing again -ugh- what happens then? A little nervous. It’s all vestibular and sound induced I think my neuro is on top of it. I just was questioning for my own sanity/fears. Thank you so much for the feedback. My husband is so supportive and understanding but it’s hard to bounce ideas off someone who just sees it as pain and worries about me. Sometimes it feels a little lonely in the migraine side of my world. It’s nice to have reassurance when these the weird stuff starts happening.

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  • By Nancy Harris Bonk Moderator

    Hi Shelly,

    Thank you for sharing your story with us. I am sorry however, to hear you are having such a difficult time right now. Let’s see what information I can give you that may help.

    Thank you for sharing your story with us – I’m sorry you are going through this right now. I can imagine you are a bit scared, I think I would be too.

    Not knowing exactly what’s going on can be wearisome, add migraine pain and dizziness to the mix and that’s a recipe for a lot of discomfort. I’m happy to hear your husband is supportive, that’s so important.

    As frustrating as testing is, it’s important to have it done so the doctor can rule out other conditions. The thing about migraine is it’s a diagnosis of exclusion, meaning, there is no image scan or blood test to confirm it. A diagnosis is arrived at once the doctor goes over our symptoms, give us a complete neurological exam and discusses our medical history and our family’s medical history. Here is information on diagnosis that may help; https://migraine.com/blog/diagnosing-migraine/.

    Retinal migraine can be very scary and one of the symptoms is temporary loss of vision, typically in one eye. Take a look at this information on this type of migraine when you get a chance; https://migraine.com/migraine-types/retinal-migraine/. ‘Ocular’ migraine is not a diagnostic term according to the International Headache Society’s International Classification of Headache Disorders, ICHD-III, beta, which is the gold standard used to diagnose migraine, rather a descriptive term. It all can be very confusing, I know. Doctors using different term, sometimes we’re not sure which way to turn. But this article should help clear up confusion about ‘ocular’ migraine; https://migraine.com/blog/those-ocular-optical-and-ophthalmic-migraines/.

    Many of us who are a bit more complicated do well to see a true migraine/headache disorder expert rather than a neurologist. Here’s why – neurologists may be fine doctors but have difficult time being experts in one area. This is because they treat so many different conditions like multiple sclerosis, stroke, epilepsy and others. Migraine/headache disorder specialists are just that, experts in one area – migraine and headache – and are board certified in headache medicine whereas all neurologists are not. It’s also important to note that all neurologists are NOT migraine/headache disorder specialists even though they may claim to be and all migraine/headache disorder specialists are not neurologists. Here is information about these experts; https://migraine.com/blog/how-are-migraine-specialists-different/. To help you find a migraine specialist, take a look at this link; https://migraine.com/blog/looking-for-a-migraine-specialist/

    I hope that helps,
    Nancy

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  • By shelly

    Thank you for the info. I’ve done a lot of reading about migraine and welcome the chance to read reputable info. I would like to be able to go to a headache specialist but don’t have one nearby. I think there is one a few hours away and I know there’s one 4 hours away but I can’t drive on freeways or in the dark (thanks to worsening depth perception, light sensitivities, and the vertigo and complete anxiety to be driving a car at all now) so I’m kind of dependent on the time off my husband and I can get together. My neuro is very open to researching and testing. I did get the hearing test done at the audiologist a few weeks ago. After his diagnosis of hyperacusis, I’ve been wearing noise canceling earbuds. My headaches are all but gone in comparison to the last 5 years, and the dizziness is reduced significantly. I feel a little ridiculous as I look like I’m trying to be techy or something but it’s worth it. Im hoping the audiologist can fit me with those small buds that fit into your ear and are flesh colored so it’s not so noticeable. The jerking type symptoms are still there but mostly when I’m tired. I have several other things going on too now that the headache isn’t masking everything. I see dr Schlagel (my neuro) tomorrow. My plan is to tell her ‘test away, lets rule out all of it’ – I was kind of tested out – ugh. Im going to the balance specialist in two weeks (I’m a little tired of running into walls) 😏 I’ve been to balance physical therapy a couple of times so the dizziness isn’t really noticeable to others as I’m pretty good at using my feet and eyes. I also think I need to see a gastro specialist again. In the afternoon after a small lunch I get a claustrophobic feeling from the inside out (so hard to explain – it feels like what an ms hug sounds like). There are other intestinal issue too. On a side note my brother has ms and I’ve been tested four times – negative although I do have a couple of migraine lesions. The headaches, which are a dull roar of a couple times a week and only a few hours long now and almost all of them at night after too much exposure to unprotected sound, are the hardest symptom. The only symptoms that really frustrate me aside from the headaches, are the jerks, the aloof not quite there feeling I get and a sudden onset of confusion ( I.e.unable to correct mixed up words like clicking tock and not being able to differentiate between right and left). I’ll be glad to rule out seizures if for nothing else than a peace of mind. Believe it or not, most of my life I’ve been pretty healthy. Looking back I can see migraine issues all my life but only enough to cause some frustration until about ten years ago and really bad for the last five.

    I’m so sorry to ramble… It isn’t often you can vent and share without feeling like a hypochondriac. Anyway, long story short, I’m trying to find answers so it doesn’t keep getting worse. Testing here I come again 😞.

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  • By Hearts

    Just to explain about Topamax . It’s a medication used for seizures and
    Migraines . Was prescribed to me by a Neurologist for my migraine .

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  • By shelly

    Thank you so much for responding. I’ took Topamax for a while in the beginning. I’m on Lomotrigene now. It is an anti seizure as well. With A LOT of trial and error, I have been relatively migraine free for approx 6 months. Even the small headaches that crop up are manageable – not out of control! A lot of my other symptoms are gone or dwindling. I’m praying I’ll keep going down this path. I chalk it up to several things – my meds Lomotrigene, Spironolactone, aspirin and vitamin D, I wear a little acoustic filter in my affected ear (it’s not an ear plug it’s used by musicians to damper certain harmful sounds), I have a very low acidic diet, I exercise and try to get enough sleep. If I’m vigilant on all accounts, I win. Funny thing is that when I do get migraines now they’re harder to ignore because I’m not used to having them daily/hourly.

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