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Living with Migraine

How best to cope?

  • By Benny

    Hey all,

    I was diagnosed with basilar and hemiplegic migraines. I deal with some of it ok most of the time, but there are the times when it seems almost impossible. For the most part the pain is almost tolerable except the really bad times, but the other constant symptoms are the things that are really truly debilitating for me as they rarely settle for very long and I have to deal with random things everyday.

    It started about 5 years or so ago, had an extremely painful migraine that lasted 4 days and have been all over the place since. I have a history of very bad ear problems also, had 4 cholesteatomas and 9 surgeries total on my ears so my hearing is not good and I have 24/7 tinitius in both ears, quite used to it by now as this has been the case for about 15 + years. I point out the ear problems as I started getting vertigo shortly after that first extreme pain migraine and after a few tests with diagnosed with Meniere’s Disease although it now seems that was an incorrect diagnosis and the vertigo is migraine related.

    I’ll list my symptoms as I would really like to know if others share these problems. It’s all a bit confusing in fairness. Anyway…
    A constant headache, usually tolerable but sometimes far too painful to tolerate and I need pain relief most of the time.

    Vertigo, this is one of the major debilitating symptoms, especially during the bad spells when it doesn’t stop for long periods of time. A feeling of dizzy and being off centre is pretty constant. Sometimes the vertigo comes on so damn fast that I fall to the floor wherever I am , happened outside a couple of times so I am VERY uncomfortable being out alone or just being out generally. This also becomes a danger with cooking, bathing, stairs etc.

    Stroke like symptoms, face droops, speech goes funny and left side of my body goes numb, feel kind of half paralysed. Pretty damn scary because I just have to stop doing anything I’m doing and wait for it to pass. It’s scary because what if I am actually having a stroke and just assume it’s migraine?

    Other symptoms are nausea, vomiting, hallucinations (usually lines, dots, flashes, but sometimes seeing faces, bugs etc). I’ll sometimes be trying to talk and just can’t say what I’m trying to say, so have to stop, catch a breath and very slowly think through what I want to say and then speak slowly in order to say it. Pressure around my eyes and head, really annoying sometimes. Sensation of liquid running down the back of my head. So many random things and this entire list is every day, but the more “dramatic” hallucinations are rare, maybe 10 or so occurences in total.

    I keep myself going by trying to focus on anything else as often as is possible.

    I take a cocktail of meds, topiramate, aspirin, paracetamol, bisoprolol (have atrial tachycardia), omeprazole for my stomach for all the meds I take. Some others that I can’t think of right now, but they’re the constants.

    People really don’t seem to understand how hugely disabling this is or what’s actually happening. Sometimes I feel like a real failure because I’m so incapable of doing anything and prior to all this I had a good career and lots of high expectations, that’s all gone and that upsets me hugely sometimes.

    I’m just shy of 37 now and feel like I’m doomed to suffer this the rest of my life which ultimately is what leads me to feeling depressed and I don’t really know how to cope with that feeling outside of just doing whatever I can, when I can to focus on something else.

    In the first place other people seemed concerned, but after a while it seems to become “boring” perhaps? Temporarily people want to support, but after a while that gets less and less, but this has never gotten less and less for me. Chronic is just that, you’re kind of stuck with it. And I am SO damn frustrated with people telling me how much worse other people have things! I appreciate that fact, but that doesn’t help me any, just makes me feel that perhaps they should deal with this for one week and see how they feel about it then. I guess I feel angry for the most part as it seems my life has been taken from me and nobody seems to understand that.

    Anyway, just noticed how long this message is so I’ll shut up now. Please though, if anyone else has these same symptoms, feelings, please reply. I’m tired of this alone feeling and need to feel less alone than I do.

    Thanks all,

    Benny

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  • By Christina Mattoni-Brashear Moderator

    Hi Benny,

    Thanks so much for being part of our community here and reaching out to share your experience! You’re definitely not alone here! I’m so sorry to hear that you’re feeling so stuck and frustrated -it can be difficult when people don’t seem to understand the “invisible” pain you’re experiencing.

    If you haven’t see them yet, I thought these pages may be helpful as they seem to relate to what you’re experiencing:

    Vertigo:
    https://migraine.com/blog/migraine-comorbidites-migraine-associated-vertigo/
    https://migraine.com/blog/migraine-with-vertigo/

    Migraine and Stroke-like Symptoms:
    https://migraine.com/faqs/how-do-the-symptoms-of-migraine-differ-from-those-of-a-tia-mini-stroke-or-stroke/
    https://migraine.com/living-with-migraine/migraine-and-transient-ischemic-attack/

    Helping Family and Friends Understand Migraine:
    https://migraine.com/blog/you-just-do-not-understand/
    https://migraine.com/blog/community-thoughts-wish-people-knew/
    https://migraine.com/blog/family-and-friends-that-do-not-understand-migraine-disease/

    I hope you find these helpful. Please stop back and let us know how you’re doing, or just to vent anytime!

    Take care,
    -Christina (Migraine.com Team)

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  • By Sandy Steubing

    Lately I’ve been taking 3 cold baths a day followed by taking a niacin vitamin pill and then meditating for 1/2 hour. I’ve been meditating and taking niacin for awhile but the cold baths is a new addition to my treatment. This whole regime seems forestall the flash over point after which I have to take an Imitrex which does work for me but also comes with rebound headaches.

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