Hemiplegic migraine

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

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.....

I have not heard of anything of this either.

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."

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

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

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?

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.

I have had typical migraines for 20 years did all the usual stuff - Imitrex, Verapamil, Botox, Aimovig. In 2021, I started having "ax in the left eye" pain that left my normal neurologists perplexed. Saw literally 25-30 different types of neuro - for Parkinson's, MS, Movement, went to John Hopkins, Mt. Sinai, no one could figure out why I couldn't walk or talk. It came and went sporadically. I have no aura. Been to the ER a dozen times when my symptoms manifested, they ran all the tests, they all came back normal and then I sat in the waiting room for hours. Finally two weeks ago a brain oncologist (I also have had a number of cancers and fusion back surgeries) saw me caused I fussed so much about not seeing a doctor on my last ER trip and a doctor actually looked at my complete complex medical history and said you need to get to Mayo clinic. She changed all my meds and wants me to have some procedure that only Mayo does. I burst into tears. I am so used to people looking at me like I am nuts.

Hello @aggie82 and welcome to Mayo Connect. You have had quite the journey with migraines, and I can understand your relief at finding a doctor who listened to you and made a recommendation. Intermittent problems that come and go are often very difficult to diagnose.

You mentioned that you were going to Mayo for a specific procedure that only Mayo does. Do you know the name of the test? You also mentioned that the doctor you saw changed your medications. Have these changes helped?