New To Hemiplegic Migraine: Any Advice Is Welcome!

By ChristinaL

1 min read

Hello everyone. Recently I was hospitalized for mini strokes. By time 5, I was finally diagnosed with hemiplegic migraines. It's terrifying. I was told I am having severe ones as the first 4 weeks it was all right sided, then it became my entire body going numb.

The attacks come and go and I have them almost daily. I went two weeks without them. No family history and they are saying it is because of the covid vaccine.

Worried about migraine severity

I'm terrified. I'm feeling hopeless. I've had all sorts of reactions to topamax, gabapentin, even the migraine cocktails. I am super sensitive to medications and always am the one in a million who gets the scary side effects. I never in my life had a migraine like this.

I had attacks 6 days in a row and the numbness was just finally wearing off and then it started all over again.

Seeking help and support for migraine relief

Does anyone have any advice, recommendations, or meds that helps them? I've been looking for support groups and researching everything I can. For 5 weeks this has been a constant thing and each time it lasts for about a week or longer. Does anyone else experience them for this long?

Thank you so much!

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Nancy Harris Bonk Moderator
Hi <inline-mention username="ChristinaL" user-id="4168159"/>, Thank you for reaching out to us. Getting a new diagnosis can be a scary experience, please know you're not alone - we're here for you! Hemiplegic migraine (HM), a rare form of migraine disease, may be difficult to live with and support is very important, which you can find right here! Let me share our information on hemiplegic migraine here; <a href='https://migraine.com/search?s=hemiplegic' target='_blank'>https://migraine.com/search?s=hemiplegic</a>. There are two common types of HM: familial and sporadic. Familial can be traced to having a gene mutation and run in families. Those with sporadic HM seem to have just one family member who has it. HM is best treated by a doctor who is an expert, and certified in headache medicine. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and more. Seeing a true expert can make a huge impact in our care. Let me share information with you on what makes these doctors so special and how to find one; <a href='https://migraine.com/blog/really-find-headache-specialist/' target='_blank'>https://migraine.com/blog/really-find-headache-specialist/</a> <a href='https://migraine.com/blog/seeing-a-board-certified-headache-specialist/' target='_blank'>https://migraine.com/blog/seeing-a-board-certified-headache-specialist/</a>. When we start new medications, it can take up to 90 days (at the therapeutic dose) before we see improvement in attack frequency and severity. During this time potential side effects may lessen as our body adjusts to the new medication. The thing is if we don't give each medication a fair trial, we'll never know which one would have be the "one" that works. Please let me know what you think! I'm looking forward to your next update! Nancy Harris Bonk, Patient Advocate/Moderator
Slektorich Member
Hello, I've had them since I was 5. It is such a scary experience. I stopped having them once I cut out all migraine trigger foods out. Def helped me tremendously 
1. Melissa Arnold Community Admin
 <inline-mention username="Slektorich" user-id="4172055"/> That's great news! Did you figure out what specific foods were triggers for you, or did you just do a broad cut from a list? So happy you found relief. -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
brainattack123 Member
HI christina- I had the same issue going to the hospital and the concern being TIA's. I lived in a lot of fear until I finally got the diagnosis of migraine. I had actually been having them for years but since head pain was never a symptom I thought I was just sick a lot. Then they got more severe around perimenopause. Stress is the only trigger for me but it was my hormones that began the high frequency. They would sometimes last 7 days beginning to end, hardly able to move or think clearly. I have been taking Candestarten 8mg 2x a day and now I only get them once in a while and I call them baby migraines bc I can still function enough that my life is no longer a dumpster fire. Having family and friends and employers be knowledgable about this type of migraine is key. I would be shocked if it were brought on by a vaccine. Get a good dr. and don't give up. I was on 8 mg for a long time but still suffered quite a bit then went on 16mg and it made all the difference. 
1. Nancy Harris Bonk Moderator
 Hi <inline-mention username="brainattack123" user-id="3768226"/>, Thank you so much for sharing your thoughts and support. It's so important to know we're not alone in living with migraine disease! You're so right - it's important we don't give up!! Wishing you a low pain day, Nancy Harris Bonk, Patient Advocate/Moderator

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