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 😂

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@vahank

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?

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Didn’t know gene testing would be helpful for hemiplegic migraines.
Due tell ..

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I was FINALLY diagnosed with hemiplegic migraines in 2018 (I was in a car accident in November of 2015 where they had, initially, thought I had a stroke). I am currently taking Nortriptyline and Eletriptan....which was working fairly well for the first month and half. There have been a lot of weather changes in Wisconsin lately so that has increased my Eletriptan intake and since taking more Eletriptan I have been experiencing: manic episodes. dizziness, agitation. suicidal ideations (no intent), a lot of sweating, increased heart rate, increased bp.....

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@nhhotmess

Didn’t know gene testing would be helpful for hemiplegic migraines.
Due tell ..

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I have not heard of anything of this either.

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I belong to a Facebook Page called "The International Hemiplegic Migraine Foundation Support Group". There are about 4,000 people on it from all walks of life and severity of illness. It is a closed group, which means that non-members can't see what you are posting. I would suggest that ANYONE join that even thinks they have HM. "IHMF serves thousands of HM patients and their loved ones by offering resources, education and support. All volunteers are either sufferers of HM or caregivers and as such may be deeply affected by our illness at times. We will always try to respond to your questions as quickly as we can but ask you to also use each other as advocates. This support group is intended for information, education and support. You always should seek the advice of your physician or another competent medical professional to address any questions or concerns you may have regarding your health."

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Thank you for posting this!! I have this too and didn’t know what it was and it was super scary a few months ago whenever I had it. I do have paralysis on my right side and I’m just now getting it on my left side. I also have fibromyalgia and central sensitization syndrome and chronic fatigue so I’m taking the recommended medication Mayo Clinic prescribed for those conditions and I’m taking lexapro for depression my primary care doctor prescribed. My neurologist prescribed to topamax and propranolol. Conditions on top of conditions for myself. I am 26 and I was in a car accident and I believe what triggered the paralysis and migraines is an injury from whiplash and concussion in 2022. I have been needing to go to the Mayo Clinic but financially I cannot at the moment. I am seeing a new neurologist locally at the end of the month and I’m hoping he can help me a bit more

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@kburton22

I was FINALLY diagnosed with hemiplegic migraines in 2018 (I was in a car accident in November of 2015 where they had, initially, thought I had a stroke). I am currently taking Nortriptyline and Eletriptan....which was working fairly well for the first month and half. There have been a lot of weather changes in Wisconsin lately so that has increased my Eletriptan intake and since taking more Eletriptan I have been experiencing: manic episodes. dizziness, agitation. suicidal ideations (no intent), a lot of sweating, increased heart rate, increased bp.....

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I have been experiencing a lot of agitation too. I know how this condition can be overwhelming but you are stronger than it 💗 Sending you a hug today

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Im a 49 YO female with a sporadic HX of migraines. I recently went to urgent care after suffering from a migraine lasting 2-3 with no relief, and in hopes to get a toradol shot and go home. They referred me to the ER after noticing that i had uneven dilated pupils. I was later referred to a neurologist and during my appointment advised them that i recently started having additional symptoms of facial weakness. I was prescribed qulipta and ubrelvy. A day later I wound up at the ER (again) after suffering back to back stroke and eplileptic like symptoms. I was admitted and underwent a MRI, CT A scan, blood work, etc...they now suspect that i have hemiplegic migraines but are not entirely sure. I was advised to seek a neurologist following my discharge. Unfortunately, my symptoms have not abated and the meds are not working after almost 2 weeks. Anyone have any suggestions?

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I’ve suffered from Hemiplegic Migraine for 9 months before going to the Mayo Clinic in Florida and getting the correct diagnosis. I had numbness in tongue, facial droop on left side of face, weakness/paralyzed on left side of body, speech was impaired to stutter/baby babble ending in bad migraine. They started one a month and progressed to every other day over a nine month period. It would take one day to recover my speech and a total of four days for other symptoms to recover. I was allergic to the medication recommended by the Mayo Clinic in 2019. Now I take Qulipta 60 mg and it aborts the migraines! No more symptoms or side effects! I have my life back.

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