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Just Diagnosed – Hemiplegic Migraine? What?

  • By girlnflight

    Hello new friends. I was just diagnosed today with hemiplegic migraine. What the what? I was hospitalized last week with what they thought was a stroke and admitted but all scans and MRI’s were clear. So I was requested to give back my cozy bed and sent out on a mission to find out what the heck was going on. I had suffered a few classic migraines throughout my life but had absolutely NO idea all these other weird symptoms I’ve been experiencing the last year (or two) were actually migraine related!!! My dentist must have thought I was crazy because my teeth always hurt. My vision was randomly blurry. I could smell things other people could not smell, my nose constantly dripped (not enough to blow but just enough to be annoying). In addition to the constant dull headache that I associated with lack of food, or the change in weather, or stress.

    The life changing symptom. One day my knee goes numb for a few hours … ok, random. The next day the same thing, my knee is numb, stays that way for a couple hours and does this thru the weekend. Then Monday comes, sitting at work still have the numb knee but all of a sudden it starts to spread up and down my leg, up my full body into my head. Just the left side. Panic sets in. They call EMS, rushed to hospital, scans, tests, blood work, can’t lift my leg or my arm, nausea like you wouldn’t believe … but ZERO headache. After a couple hours I can move my leg and arm but still have pretty decent numbness and still do 11 days laters. Had no clue migraine could cause this kind of reaction!

    Any-who, my concern is since I’m only in my 4th hour of knowing I’m the newest member of the migraine club, what should I do first? They prescribed Topamax which I took the first 25mg instantly as my left side is still partially numb and the headache just needs to be gone. But I’m not a fan of prescription drugs, in-any-way. I prefer medical herbal remedies (wink) to stave off the most severe pain at night but that’s not an option while I’m at work or amongst the people. And other than the weight loss (umm, yes please) I’m not liking any of the side effects especially since confusion and brain fog is one of my migraine symptoms that I’d like to resolve ASAP!

    Any help on where to start and what to do first would be greatly appreciated. I wish I knew what trigger to look for but I didn’t even know I had this so finding a pattern for symptoms I’ve been living with for so long, I don’t even know what “normal” looks like anymore 😀

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  • By Nancy Harris Bonk Moderator

    Hi girlinflight,

    I posted to you yesterday, but it’s disappeared! Let me start over!

    Welcome to the Migraine.com discussion forum. We’re glad you are here! Let me see what information I can give you that may be helpful.

    Classic migraine is used more as a descriptive term, not diagnostic, according to the International Headache Society’s International Classification of Headache Disorders, III beta, the gold standard used to diagnose migraine disease. Migraine with aura may be more suited (although I’m not a medical professional and am not diagnosing you) for some of the migraine attacks you’ve experienced. I’m not sure if you remember Serene Branson, the reporter who had a migraine with aura attack live during one of her broadcasts. People were afraid she was having a stroke, but it was actually migraine with aura. Aura can be visual, sensory or motor. Here is more information on ICHD and Serene Branson: https://www.ichd-3.org/1-migraine/ and https://migraine.com/blog/serene-branson-complex-migraine-unraveling-the-mystery/. You’ll see complex, and complicated used in these articles, but again they are descriptive terms, not diagnostic.

    When we start new medications, it can take up to 90 days before we see a reduction in migraine attack frequency and severity, and that doesn’t include dose changes. During this time potential side effects may lessen as well. If we don’t give each medication a fair trial, we’ll never know which one would have be the one to work! When you get a chance take a look at our Topamax profile for more information on this medication; https://migraine.com/migraine-treatment/topamax/.

    Hemiplegic migraine is a rare form of migraine disease that typically starts in childhood, but not always, There usually is a familial component to this type of migraine. Anyone else in your family have this? Here is information on hemiplegic migraine you may want to go over; https://migraine.com/migraine-types/familial-hemiplegic-migraine/.

    If it were me, I would seek out the expertise of a true migraine expert rather than a general neurologist. Let me explain. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as epilepsy, stroke, multiple sclerosis, Parkinson’s and others. A true migraine/headache expert is board certified in headache medicine which is different than being certified in neurology and may treat one condition all day, every day. For more information on how these doctors are different and how to find one take a look at this information; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    Keeping a detailed migraine diary for a few months can be very helpful in identifying our triggers and any patterns our migraine attacks may have. I did this for my son when he was nine years old and we discovered dark chocolate, irregular sleeping patterns, dehydration, and skipping meals, and nitrates were strong triggers for him. Here is more information on keeping a diary; https://migraine.com/blog/keeping-migraine-diary-basics/.

    Learning all we can about our particular type of migraine disease or headache disorder will allow us to get the best treatment and learn to live with our “new normal.”

    Let me know if you have more questions – I’m happy to help!
    Nancy

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  • By girlnflight

    Hi Nancy,

    Thank you so much for the reply and apologies for the delay! I signed up then lost all my login info, ha! Thank you for the suggestion of finding a HM specialist. Oddly, a coworker’s husband is epileptic and suggested his neurology group and one of the doctors there is actually one of the specialists from the link, so we’re good there. Couldn’t get in until November but better than never! On the plus side, Topamax seemed to be working well but a bad side effect was making my lady parts go numb, yikes! Then developed a decreased pleasure sensation in most other sensory things. I can see why this drug would help with addiction as it literally sucks the joy received from most physical stimuli like food, massages, smells, exercise, sex, ect. Decreased the Topamax and the migraines came back so now adding a different rx to the mix. I guess this is how life will be for awhile, trying things until we find the right combo.

    I downloaded the Migraine Buddy on my phone to keep track of things, remembering to log my events and symptoms is a chore but I’ll get used to it, haha. In any case, thank you so much for the links and advice!!!
    Kristi

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  • By Nancy Harris Bonk Moderator

    Hi Kristi,

    Thank you for the update! I’m happy to hear things are moving along in the right direction.

    Something to keep in mind is that potential side effects may lessen as our body adjusts to the new medication. I recall when I was taking Topamax the tingling seemed to lessen as time went by. Hopefully this will be the case for you as well!

    Keep me posted on how you are doing!

    Nancy

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