Hemiplegic migraine

Posted by guderianj @guderianj, Jan 3 12:10pm

I was diagnosed with hemiplegic migraines and these present as a stroke (all the symptoms) but are not a stroke they are a migraine. They are caused by stress on the body physical, emotional, etc. I was posting to raise awareness and to see if possibly anyone else shares this diagnosis. It is rare disease and can be terrifying to not have information on a person to person level. I have read all the information the Internet had to offer 😂

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Hello @guderianj and welcome to Mayo Clinic Connect. I appreciate your post about hemiplegic migraine. We do have other members on Connect who have spoken about this such as @azza1 and @gtownsend. I hope they will join this discussion.

I looked on Mayo Clinic's website and see that there is a Clinical Trial for medication for these types of migraines. Here is a link to that Clinical Trial https://www.mayo.edu/research/clinical-trials/cls-20305353?_ga=2.127727566.273405985.1641077529-1603362872.1610991398, The Clinical Trial is closed now.

As you are comfortable doing so, please share a bit more about your history of migraines. Have you had auras and one-side weakness and/or paralysis? How long do your migraines generally last? What type of meds are you taking?

Here is a link to a video by a Mayo neurologist, discussing his history of migraines that you might find interesting.

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@hopeful33250

Hello @guderianj and welcome to Mayo Clinic Connect. I appreciate your post about hemiplegic migraine. We do have other members on Connect who have spoken about this such as @azza1 and @gtownsend. I hope they will join this discussion.

I looked on Mayo Clinic's website and see that there is a Clinical Trial for medication for these types of migraines. Here is a link to that Clinical Trial https://www.mayo.edu/research/clinical-trials/cls-20305353?_ga=2.127727566.273405985.1641077529-1603362872.1610991398, The Clinical Trial is closed now.

As you are comfortable doing so, please share a bit more about your history of migraines. Have you had auras and one-side weakness and/or paralysis? How long do your migraines generally last? What type of meds are you taking?

Here is a link to a video by a Mayo neurologist, discussing his history of migraines that you might find interesting.

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Thank you, I will review everything. I have had “typical” migraines with aura, nausea, sound and light sinsitivity etc. daily my entire life. They are well managed with topomax. My hemiplegic migraines presents with left sided numbness, weakness, neurological confusion, and fatigue. I am taking verapamil twice aday. 40mg quick release in the am and 120mg slow release in the evening. Along with the topomax 125mg I was already taking. My episodes last anywhere from hours to weeks. Depending on cause. I have no auras (visual disturbance in a glittering blob)

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@guderianj

Thank you, I will review everything. I have had “typical” migraines with aura, nausea, sound and light sinsitivity etc. daily my entire life. They are well managed with topomax. My hemiplegic migraines presents with left sided numbness, weakness, neurological confusion, and fatigue. I am taking verapamil twice aday. 40mg quick release in the am and 120mg slow release in the evening. Along with the topomax 125mg I was already taking. My episodes last anywhere from hours to weeks. Depending on cause. I have no auras (visual disturbance in a glittering blob)

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I also have speech difficulties and generally trouble focusing like my brain is just very tired! Forgot that part. The video is interesting those types of migraines are what i have had since i was a child. But daily topomax fixed it. The clinical trial is interesting but so far I have heard terrible things about botox when used for migraine treatments. 🤷‍♀️

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@guderianj

I also have speech difficulties and generally trouble focusing like my brain is just very tired! Forgot that part. The video is interesting those types of migraines are what i have had since i was a child. But daily topomax fixed it. The clinical trial is interesting but so far I have heard terrible things about botox when used for migraine treatments. 🤷‍♀️

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Yes , I am taking Botox injections every 4 months plus the Topomax 100 Mg at bed time . I have hemiplegic migraine without aura. Since I started for taking the Botox injections, the no of the episodes get too down.

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@guderianj

Thank you, I will review everything. I have had “typical” migraines with aura, nausea, sound and light sinsitivity etc. daily my entire life. They are well managed with topomax. My hemiplegic migraines presents with left sided numbness, weakness, neurological confusion, and fatigue. I am taking verapamil twice aday. 40mg quick release in the am and 120mg slow release in the evening. Along with the topomax 125mg I was already taking. My episodes last anywhere from hours to weeks. Depending on cause. I have no auras (visual disturbance in a glittering blob)

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When I was diagnosed in the hospital neuro unit I didn't want any information. I regret this because it has left me playing catch up as to what is what. I just refreshed on aura for this condition "By definition, individuals with hemiplegic migraine experience weakness on one side of the body during the aura (hemiplegia)" So I do have aura. This is from the NORD website if any one else would like to read their information.

– Hemiplegic Migraine https://rarediseases.org/rare-diseases/hemiplegic-migraine/

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