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Hemiplegic migraine: Looking for input from other patients

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 😂

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smokey1210 | @smokey1210 | Apr 2 5:51am
In reply to @eastbaydave "Thank you, Loupy. Been seeing neurologist 4 years now.Not many here (🙄in fact 1, but I..." + (show)
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Thank you, Loupy. Been seeing neurologist 4 years now.Not many here (🙄in fact 1, but I like him). Had every treatment, med etc available. Still on Topirimate, and Emgality. Have gone thru everything else including nerve searing, triptans, Amovig, Ajovy… and non medical approved nothing. Lists …Some made it worse . I’m retired. I live to paint. Thought I’d be out there everyday but appreciate it more when I can. Miss hiking and exercising. I see everyday hard others have it here and it can get real bad but I’m lucky, when I’m not feeling sorry for myself.
I posted this but it seems to have got buried. After weeks in a dark room I was forced to find something positive out of all this… or ‘break’
Drew my thoughts and surroundings and did a painting. I feel really weird posting it again… I’m not looking for anything except to show something that helped me…. Try to find a way out…
Thank you

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@eastbaydave
I was just diagnosed with my first HM. Have been under a LOT of stress recently. I have a long history of migraines, but never anything like this!
How do you know for sure if it was a HM vs. stroke?
How often do they recur?
How to prevent them?
I can't go to a dark room and recover. I take care of my Mother (90 y/o), which is a lot of my stress.
This has caused even more because I'm not sure that I was given the correct diagnosis!!!
I am so sorry to hear about your situation. That would be so depressing. I am also very proud for you, that you were able to turn it around into a very positive and productive situation! Your painting is beautiful!

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smokey1210 | @smokey1210 | Apr 2 5:58am

I was just diagnosed with my first HM. I have had migraines for many years, but none like this!
I keep wondering if I was correctly diagnosed? Perhaps it was really a stroke. ,(This was the initial diagnosis and treated with TNK) Maybe I'm in denial! Did you feel this way initially,?

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smokey1210 | @smokey1210 | Apr 2 7:15am
In reply to @susiesjourney "on 5/6/22 I had stroke like symptoms of numbness on the left side of my body,..." + (show)
Profile picture for susiesjourney @susiesjourney

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?

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@susiesjourney
I have had NO tests! A stroke was ruled out post TNK and a negative MRI. That's why I am confused and frustrated
!
What type of testing/treatment should I have ?

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brunschweiger | @brunschweiger | Jun 13 12:14pm

I am basically searching for information centered on two questions. In April of 2022, my wife took me to the ER as she had difficulty waking me from a mid-day nap. When she did, she told me to get ready to go the the ER. When I attempted to go to get dressed, I found it extremely difficult to walk, with my left leg not functioning properly. At the ER, the staff called a Stroke Code. They found I was extremely difficult to wake and could only keep me awake for a matter of seconds each time. When I finally because alert enough to understand, the doctor told me I was experiencing a Complex Migraine. The entire ordeal lasted for five hours. A few days after, I met with my family doctor as instructed. He affirmed that I had had a Complex Migraine then told me that I had also had a small stroke. I then told him that I was continuing to have a range of symptoms ever since the trip to the ER (the list of symptoms would take about six pages to list). These symptoms varied from day to day in intensity but were always present. My doctor ran about every test he could think of. Then in January of 2023, I was taken to the ER again but this time the physical symptoms were now on my right side, with the head symptoms continuing basically unchanged. Once again I was told I was experiencing a Complex Migraine. Then in May of 2023, I was taken to the ER with severe physical symptoms and drowsiness. This time, again told I was experiencing a Complex Migraine, I was told I had had a stroke at the same time. I spent the next three or four months learning how to walk again while undergoing more tests. The long story short, I am on my 8th Neurologist, the first who seems to know what he is talking about. And at the end of this past December, I was told this whole experience has been a Hemiplegic migraine. He ordered a special blood test to determine the plan of treatment. My first question is; is it possible or is there any evidence of someone having a Hemiplegic migraine continuous, as in every day, for over four years? Second question; is it possible for a Hemiplegic migraine to directly cause two separate strokes?

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1 reply
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Moderator
Lisa Lucier, Moderator | @lisalucier | Jun 16 8:29am
In reply to @brunschweiger "I am basically searching for information centered on two questions. In April of 2022, my wife..." + (show)
Profile picture for brunschweiger @brunschweiger

I am basically searching for information centered on two questions. In April of 2022, my wife took me to the ER as she had difficulty waking me from a mid-day nap. When she did, she told me to get ready to go the the ER. When I attempted to go to get dressed, I found it extremely difficult to walk, with my left leg not functioning properly. At the ER, the staff called a Stroke Code. They found I was extremely difficult to wake and could only keep me awake for a matter of seconds each time. When I finally because alert enough to understand, the doctor told me I was experiencing a Complex Migraine. The entire ordeal lasted for five hours. A few days after, I met with my family doctor as instructed. He affirmed that I had had a Complex Migraine then told me that I had also had a small stroke. I then told him that I was continuing to have a range of symptoms ever since the trip to the ER (the list of symptoms would take about six pages to list). These symptoms varied from day to day in intensity but were always present. My doctor ran about every test he could think of. Then in January of 2023, I was taken to the ER again but this time the physical symptoms were now on my right side, with the head symptoms continuing basically unchanged. Once again I was told I was experiencing a Complex Migraine. Then in May of 2023, I was taken to the ER with severe physical symptoms and drowsiness. This time, again told I was experiencing a Complex Migraine, I was told I had had a stroke at the same time. I spent the next three or four months learning how to walk again while undergoing more tests. The long story short, I am on my 8th Neurologist, the first who seems to know what he is talking about. And at the end of this past December, I was told this whole experience has been a Hemiplegic migraine. He ordered a special blood test to determine the plan of treatment. My first question is; is it possible or is there any evidence of someone having a Hemiplegic migraine continuous, as in every day, for over four years? Second question; is it possible for a Hemiplegic migraine to directly cause two separate strokes?

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Hi @brunschweiger - welcome to Mayo Clinic Connect. I'm sorry you've been through such an ordeal. I'm glad you finally found a neurologist you are comfortable with and have a definite diagnosis.

We are not medical professionals here, but rather fellow travelers in the journey dealing with health challenges.

I moved your post here, however, so you could join in on an existing discussion of hemiplegic migraine:

- Hemiplegic migraine https://connect.mayoclinic.org/discussion/hemiplegic-migraine/

Hoping that here you can chat with others such as @smokey1210 @guderianj @loupy @eastbaydave @hemichill and others who may have some input from their own experiences going through testing and/or with hemiplegic migraine. They can tell you if they've ever had a hemiplegic migraine daily for a period as long as 4 years and if they've had a hemiplegic migraine cause a stroke or more than one stroke.

How are you feeling today, @brunschweiger?

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brunschweiger | @brunschweiger | Jun 16 12:34pm
In reply to @lisalucier "Hi @brunschweiger - welcome to Mayo Clinic Connect. I'm sorry you've been through such an ordeal...." + (show)
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi @brunschweiger - welcome to Mayo Clinic Connect. I'm sorry you've been through such an ordeal. I'm glad you finally found a neurologist you are comfortable with and have a definite diagnosis.

We are not medical professionals here, but rather fellow travelers in the journey dealing with health challenges.

I moved your post here, however, so you could join in on an existing discussion of hemiplegic migraine:

- Hemiplegic migraine https://connect.mayoclinic.org/discussion/hemiplegic-migraine/

Hoping that here you can chat with others such as @smokey1210 @guderianj @loupy @eastbaydave @hemichill and others who may have some input from their own experiences going through testing and/or with hemiplegic migraine. They can tell you if they've ever had a hemiplegic migraine daily for a period as long as 4 years and if they've had a hemiplegic migraine cause a stroke or more than one stroke.

How are you feeling today, @brunschweiger?

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@lisalucier

More tests the last two day so pretty tired. The usual major symptoms of right side weakness and balance issue.

Thanks for asking

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