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Memorable Migraine Stories

Hundreds of stories from our community have been submitted and published this year. Here is a short list of some of the most memorable quotes.

I am not my illeness

After seven years with migraines I have finally come to the conclusion that I am not my migraine. …I do not wish anyone to have this disease but I will wait for the day when people finally understand it is not a simple headache; it is more like a seizure or epilepsy. Read more.

Knowing I am not alone

Just knowing I am not alone in the world of daily migraines is a validation worth a million bucks to me. I know that I am not crazy, not a malingerer or hypochondriac or drug addict… Read more.

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  • jennylue
    3 years ago

    Hi everyone!
    I am responding to something like status migrainosus and pain triggered thru out the body. I remember vividly asking loved ones ‘don’t even LOOK at me, it hurts for you to do that’.

    I just joined this forum but have suffered migraines for the past 32 years, remembering headaches since I was 4 and my dad taking me for head x-rays. My first migraine was at 19. Imitrex eventually and still saves my sanity, along with fioricet, which I began long before Triptans were available.

    My heart goes out to all sufferers because I’ve lost days adding up to probably who knows how many months or years of my life to migraines. As well as money from list work.

    Anyway – last month I had an episode of inability to speak coherently or walk/use my arms – like I had a stroke. My ECG was abnormal and I landed in the hospital with elevated BP as well. I was discharged after 24 hours and assurance it wasn’t a heart attack and probably not a mini stroke.

    My internist, who is excellent and has saved my life twice before thru diagnosis, believes it was part of a migraine. I did get a beginning of a migraine 30 minutes after this episode, but I’ve never experienced auras, loss of speech, etcetera in all these years.

    Has anyone else had symptoms like mine? It came on in seconds, I lost memory for maybe 60 seconds, was lucid but unable to use my tongue or arms or legs effectively. It all passed within 20 minutes. But I had residual muscle shakiness and fogginess, elevated blood pressure and abnormal ECG.

    I’m interested to hear of any similar stories. I’m getting a stress test and going to see a neurologist in the next month… But I can’t imagine driving or what not if this is now a symptom I’m developing if migraine that appears in a second. I had no headache that day until after the incident.

    Thank you!
    Jenny

  • shelleysqrd
    2 years ago

    HI Jenny. I’m sorry you are having a rough time and hope you feel better soon. I have also had migraines since childhood but we’re not disabling until this last couple of years. A year ago I woke up confused, in horrible pain and stuttering /partially aphasia. I made an appointment with my family doctor who then called me back canceling the appointment and telling me that I would need to see my neurologist (nothing like having your doctor push you off to another while you think you’re having a stroke). My EEG and CT were negative but I couldn’t talk without severe stuttering and groping for words. It’s been determined that mine is just part of my chronic migraine. I still struggle with this at times-always as part of the migraine (aura, symptoms and post migraine). I’ve found that I become terribly clumsy and garbled my words just before I get hit and it continues until the migraine has run its course. At these times I jokingly call myself the village idiot. I shake /tremble but no paralysis I’m hoping that it is the same for you (meaning it’s only part of your migraine and not malignant)
    Warm regards,
    Shelley

  • SJD
    3 years ago

    Very puzzling. I wish I had something to offer other than support. I have been told that people can grow into and out of seizures. I feel for you.

  • SuZQ
    4 years ago

    My migraines started in elementary school. I used to come home at lunch and lay on the couch with a heating pad. The worst now, is knowing my boss thinks I am lying when I tell him I cannot function. One time I told him I had a migraine and I had to go home. He said no, I didn’t look sick. So, I lay down on the floor and covered my eyes in a lighted office in the middle of a warehouse. The pain was excruciating and I did not care what I looked like. I have Zomig now, and that seems to work better than anything else. None of the over-the-counter pain relievers even touch the pain.

  • SJD
    3 years ago

    People who never get migraines don’t quite often don’t get it. Neither my mom, dad or brother ever have headaches. I get headaches and migraines. Mine are better since moving from Colorado to Arizona. Too bad Phoenix is an unpleasant place to live.

  • jennylue
    3 years ago

    Suzy,
    I’m so sorry your boss doesn’t understand

  • Joyce Shearer
    4 years ago

    I’ve had chronic migraines for 14 years. My Dr. tells me that once the pattern has become encoded into the brain that there’s really no much, if anything you can do. I feel like I want to keep trying things like de-toxing or trying the new SPG blocks. Winter is my very worst time and even though it was much warmer this year I had a terrible time. I am now trying Lyrica at my Dr,s suggestion, but am concerned about side effects. I’ve been reading about a natural product that is called TULIV. When I called I was told that it helps genetic headaches but not those caused by an accident or injury. Has anyone tried either of these preventative measures?

    Noodle

  • SJD
    3 years ago

    No. I’ve never heard of them.

  • bob
    5 years ago

    going on 20 years of daily migraines.most doctors have got a flier from big pharma and push some worthless drug on me.Yet am told not to take OTC yes they partly work even tho i am dosing my self with over 1500 mg of aspirin a day.

  • SJD
    3 years ago

    Unfortunately I have gotten good results with prescription meds such as Naratriptan. It’s expensive but less if using a Canadian online pharmacy.

  • Kim Hamilton
    3 years ago

    I want to share my story with each of you as I had migraines for 41 years. Dr. Kevin Smith specializes in Migraines and he cured mine. See this link for more:

    http://www.thedoctorstv.com/videos/could-the-cause-of-your-migraines-be-in-your-nose

    The procedure was a day surgery and my insurance covered the costs. Dr. Smith’s web site is KevinSmithmd.com. If you have a CT scan of your sinuses (without contrast) you can send it to him by mail and he will tell you after he reviews it if he can help you. So well worth it. I still can’t believe I am migraine free it is so wonderful; an absolute miracle.

    Good luck and God Bless on your journey to being pain free.

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