Hemiplegic migraine

Posted by guderianj @guderianj, Jan 3, 2022

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 😂

Interested in more discussions like this? Go to the Headache & Migraine Support Group.

Yes, we cut out verapamil, imitrex, quilipta. Now I take propanol, a medrol for severe migraines and rizatriptan for lighter migraines. She tried getting b12 inj for severe but insurance turned it down. Will still do quarterly Botox. This is in layman’s terms the the procedure was one drop of my blood injected into spinal column over time will assist with migraines. I may have heard it all wrong it was a lot to absorb and I am not medical.

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I have read the information about Hemiplegic Migraines. I get weakness on bith sides of my body. I get numbness on my face, mostly my lips on the left side. Could this still be Hemiplegic? I have had them everyday since Iwas a teenager. I am now 61 yrs old and they seem to have gotten worse. It gets harder and harder to push through on the bad days. I have been to multiple doctors and no one has ever mentioned Hemiplegic Migraines. I also lose some of my paripheral vision. I see bright colors and have blurry vision. I strugle with focus and have dyslexia symptoms. I guess I am just curios if it is worth pursuing this thought. Like I said I have been to so many doctors and none have helped long term.

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Profile picture for dlayne2025 @dlayne2025

I have read the information about Hemiplegic Migraines. I get weakness on bith sides of my body. I get numbness on my face, mostly my lips on the left side. Could this still be Hemiplegic? I have had them everyday since Iwas a teenager. I am now 61 yrs old and they seem to have gotten worse. It gets harder and harder to push through on the bad days. I have been to multiple doctors and no one has ever mentioned Hemiplegic Migraines. I also lose some of my paripheral vision. I see bright colors and have blurry vision. I strugle with focus and have dyslexia symptoms. I guess I am just curios if it is worth pursuing this thought. Like I said I have been to so many doctors and none have helped long term.

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Hi, @dlayne2025 - since you were asking about hemiplegic migraines, I merged your discussion into this one on Hemiplegic Migraine so you could chat with other members discussing this type of migraine.

You mentioned going to multiple doctors about your symptoms. Wondering what diagnosis or diagnoses have you been given? What treatments have you tried so far?

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Profile picture for Lisa Lucier, Moderator @lisalucier

Hi, @dlayne2025 - since you were asking about hemiplegic migraines, I merged your discussion into this one on Hemiplegic Migraine so you could chat with other members discussing this type of migraine.

You mentioned going to multiple doctors about your symptoms. Wondering what diagnosis or diagnoses have you been given? What treatments have you tried so far?

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Aimovig seemd to work some but insuracne quit covering it. I went to a holistic nuerologist that gave me excersises to to, they helped some. Other than that noe of the doctors have been very helpful. I have had scans and MRIs and they say they do not see anything.

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I had a traumatic brain injury 27 years ago. After physical therapy, occupational therapy, chiropractic and neurologist as part of my team. This were dibillatating. Than for several years noo migraines? Now my migraines are 17+ a month with severity between 7-10 pain levels with all the symptoms. In October of 2024 I had a stroke. I am just 63! I eat healthy, was physically active, love my job, living in paradise, Hawaii. Started having symptoms, MRI's CAT SCANS, followed by family Dr., Neurologist, and neurologist headache specialist. Diagnosis of hemiplegic migraines yesterday. The symptoms are in alignment with what I am currently experiencing! Please HELP
Warmest Aloha,
Sandra

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Profile picture for Teresa, Volunteer Mentor @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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Hello

I have been diagnosed with Hemiplegic migraines.

Just this month I was hospitalized 2x back to back. My attacks are very textbook symptoms. I start with a tingling in my right hand then it slowly moves up my hand to a full-fledged numbness and keeps working its way on the right side of my body. My pain in my head is a sharp pain on the right side, usually in the front and then eventually as a time progresses it’s the entire right side. I suffer with slurred speech, not being able to form sentences, extreme confusion. My entire right becomes so dead like where I can’t lift my right arm. My right leg becomes nearly impossible to walk on. My attacks last generally for an hour and can come in clusters so I can get one or two a day if I don’t receive Medication for pain. My hemiplegic migraines occurred because I was about three weeks past due my Botox injections that I’ve been doing religiously for the past seven years every three months. This was the first time that I missed the exact date for injections just due to scheduling. When admitted to the urgent care I was put through a battery of testing because doctors believed it was a stroke since it mimics stroke like symptoms. In conjunction to my Botox I also tak le the injection that I self administer once a month called emgality to release the intense pressure that my head carries. It’s truly scary having thos type of migraine because I’ve been in public when it happens, and I have to go and lay down in the car or wherever I can because I can’t function for the hour or so. My head is always in a state of pain if that makes sense. It’s just tolerable with the help of these medications. prior to botox I was getting attacks where I would not be able to get out of the bed because within 20 min or so of waking I would get hit wi my migraines making it just extremely debilitating not being able to tolerate anything lights, sounds smells pretty much everything. Life just becomes just too loud and too bright and too disturbing so I normally have to shut everything out and cover my eyes having no sound and just try and go to sleep, which is nearly impossible when you have that kind of severity of head pain.

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Profile picture for asedano81 @asedano81

Hello

I have been diagnosed with Hemiplegic migraines.

Just this month I was hospitalized 2x back to back. My attacks are very textbook symptoms. I start with a tingling in my right hand then it slowly moves up my hand to a full-fledged numbness and keeps working its way on the right side of my body. My pain in my head is a sharp pain on the right side, usually in the front and then eventually as a time progresses it’s the entire right side. I suffer with slurred speech, not being able to form sentences, extreme confusion. My entire right becomes so dead like where I can’t lift my right arm. My right leg becomes nearly impossible to walk on. My attacks last generally for an hour and can come in clusters so I can get one or two a day if I don’t receive Medication for pain. My hemiplegic migraines occurred because I was about three weeks past due my Botox injections that I’ve been doing religiously for the past seven years every three months. This was the first time that I missed the exact date for injections just due to scheduling. When admitted to the urgent care I was put through a battery of testing because doctors believed it was a stroke since it mimics stroke like symptoms. In conjunction to my Botox I also tak le the injection that I self administer once a month called emgality to release the intense pressure that my head carries. It’s truly scary having thos type of migraine because I’ve been in public when it happens, and I have to go and lay down in the car or wherever I can because I can’t function for the hour or so. My head is always in a state of pain if that makes sense. It’s just tolerable with the help of these medications. prior to botox I was getting attacks where I would not be able to get out of the bed because within 20 min or so of waking I would get hit wi my migraines making it just extremely debilitating not being able to tolerate anything lights, sounds smells pretty much everything. Life just becomes just too loud and too bright and too disturbing so I normally have to shut everything out and cover my eyes having no sound and just try and go to sleep, which is nearly impossible when you have that kind of severity of head pain.

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Hello @asedano81 and welcome to Mayo Connect. I appreciate you sharing your experience with Hemiplegic migraines. Your post points out just how debilitating migraines can be. It is good that you have some medications that help make this more tolerable.

How long ago did these migraines begin? Has this been over many years?

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Profile picture for guderianj @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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hey there, i've had hemiplegic migraines for years. keeping a trigger journal (sleep, caffeine, weather) helped me spot patterns. i also found some deep‑dive posts about aura + weakness over at The Migraine Network – might be worth a look if you’re digging for ideas. hope everyone finds relief

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I was diagnosed with Hemiplegic Migraine in 2011. I was actually bed bound for about 4 months. I have had multiple episodes and they are terrifying. The more I have the better I get at feeling them come on and getting some place safe (preferrably not in my car). My first one happened as I was driving to work in November 2011. I ended up crossing three lanes of traffic as I was losing feeling on my entire right side. By the grace of my higher power I did not cause an accident. Over the years, as I have tried multiple treatments for my chronic pain, migraines, and fibromyalgia, the hemiplegic symptoms have decreased in frequency. It sucks that there isn't really a treatment for them too. Just life style changes. Best of luck to you! You are not alone!

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Oh, I also meant to ask about imaging. I'm fully assuming you have had imaging done. One of the treatments that was brought up to me by my neurologist is called a spinal blood patch. I have had that done after I had a spinal tap (lumbar puncture) that resulted in a spinal headache. I think this treatment is a one and done, but I'm not sure. Anyway, just wanted to mention that as well.

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