Hemiplegic migraine

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.

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)

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. 🤷‍♀️

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.

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/

on 5/6/22 I had stroke like symptoms of numbness on the left side of my body, recurring 6/2 for 2 weeks and again last Friday, 7/8. I was put into the hospital with possible stroke (I'm 54 yrs old) and all test were inconclusive except they found a PFO in my heart (google it) that they now don't think was the reason for my stroke-like symptoms. I'm in my 3rd month of diagnoses after multitudes of tests, hematologist, rheumatologist, neurologist a whole lot of acronyms came into my life i.e. MRI, TEE, EMG, CT, PFO.... Now yesterday my neurologist has indicated since I keep having symptoms, he's thinking maybe not a stroke and wants to look into the hemiplegic migraine. He sent me home with Nurtec ODT and told me to take it when I have symptoms and if it helps the symptoms we are on the right track. So, I guess I'm not technically diagnosed with it YET but in reading up on it today, all of the symptoms are all ME for sure. What tests did you all have to conclusively diagnose you with hemiplegic migraine?

Had my first Hemiplegic migraine on Dec 4. Right side paralysis for about 15 minutes. Trip to hospital to rule out stroke. I had had two aura episodes during the previous two weeks. Has anyone had the genetic testing done to confirm gene abnormalities?

My 66-year-old husband was diagnosed with what was suspected to be a condition related to Pick's Syndrome over 40 years ago. However, he now believes he was misdiagnosed. I've done my own hunting, and feel fairly sure he has Hemiplegic Migraine with Migrainous corpalgia. He has every single symptom of both. He can have either short (hours-1 day) or long-term (up to two weeks) recovery periods, and there have even been rare times in the last 20 years he has lost his memory of who I am, where he is, had had comatose symptoms in one episode, difficulty speaking. I know in his earlier days with this, he even had two weeks of blindness and had also had to teach himself to read again. But usually, it is weakness to near paralysis on one side, not usually accompanied by headache, he can have excruciating limb pain that is sudden and sporadic, but usually occurs at times when he has in the midst of the hemiplegic episode. I don't know if he will pursue anything about this, as the initial treatment he received all those years ago, and his own years as a research scientist have left him jaded with the system, but I feel fairly sure this is the situation. It's really tough to have a totally normal life when this stuff hits, and he is almost superhumanly strong, but he does try. It does seem to occur in periods of stress.

I'm an 81 year old male. Never had a problem with headaches in my life. Two weeks ago, I had, what turned out to be a hemiplegic migraine, occurring while I was going to sleep in the evening. Couldn't move right side, slurred speech - all signs of a stoke. My wife called 911, but by the time they got here, it was over and I was fine and she drove me to the ER. CT and MRI ran - all clear as well as blood tests. Kept over night, but a heart monitor was attached and they discovered I was having periodic a-fib. Put me on 81 mg aspirin, Eliquis and Topomax. Was already on blood pressure meds. Under care of neurology and general practitioner. They feel blood supply to brain caused the events. No clogged arteries in brain or elsewhere. But still have hemiplegic migraine episodes every day or so, each lasting about 10 minutes.

Danralph, sorry to hear you are going through that. How/who diagnosed your condition that they did not immediately, simply, and with conviction, say it was a TIA ? I find that doctors do not even want to discuss the migraine cause and will only talk about TIA.
Also, you say you are on Topomax but continue to have migraines? What is the Topomax doing for you?