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Message
OT docs. Hemiplegic migraine—update
Posted on 1/30/25 at 5:15 pm
Posted on 1/30/25 at 5:15 pm
Hey guys…my niece has a history of hemiplegic migraines. She had another episode today and we are in the ER.
Any neuros/pediatricians/ER docs can give me any laymen advice.
Her weakness has resolved, but she still has a little confusion. Waiting for transport to peds facility, but I’m not doing well. Dr on staff was not helpful.
Last CT and MRI did not have any abnormal findings. Just looking for some reassurance.
UPDATE: we have seen peds, peds neuro and stroke neuro. All agree with hemiplegic migraine. MRI was clear with no evidence of stroke or TIA.
She had blood drawn to send out for genetic testing. Right now she is finally sleeping. Poor thing had to go to MRI at 4:00 am, got back at 5:30. Slept 6-8 and was up since. She finally went to sleep about an hour ago.
Thanks to everyone for your comments and advice. I hate that anyone has to deal with this, but I’m glad we’re not alone.
Any neuros/pediatricians/ER docs can give me any laymen advice.
Her weakness has resolved, but she still has a little confusion. Waiting for transport to peds facility, but I’m not doing well. Dr on staff was not helpful.
Last CT and MRI did not have any abnormal findings. Just looking for some reassurance.
UPDATE: we have seen peds, peds neuro and stroke neuro. All agree with hemiplegic migraine. MRI was clear with no evidence of stroke or TIA.
She had blood drawn to send out for genetic testing. Right now she is finally sleeping. Poor thing had to go to MRI at 4:00 am, got back at 5:30. Slept 6-8 and was up since. She finally went to sleep about an hour ago.
Thanks to everyone for your comments and advice. I hate that anyone has to deal with this, but I’m glad we’re not alone.
This post was edited on 1/31/25 at 5:16 pm
10
Posted on 1/30/25 at 5:21 pm to NoHoTiger
Let me reach out to a friend...
Posted on 1/30/25 at 5:24 pm to N2cars
Thanks Vette…scans were 6 months ago.
Posted on 1/30/25 at 5:26 pm to NoHoTiger
Does anyone else in your family have a history of those type of migraines? It’s my understanding there can be a genetic link.
I’ve never had one but know folks from a migraine group I was in when I had migraine with aura that talked about how scary they can be. They’ll work to make sure it wasn’t potential stroke because symptoms are really similar.
Sending some good vibes your way.
I’ve never had one but know folks from a migraine group I was in when I had migraine with aura that talked about how scary they can be. They’ll work to make sure it wasn’t potential stroke because symptoms are really similar.
Sending some good vibes your way.
Posted on 1/30/25 at 5:27 pm to NoHoTiger
It's a migraine that looks like a stroke, but resolves over hours typically and is not associated with long term neuro deficits. It often leads to extensive/excessive testing each time it occurs because of the hemiplegia. What other questions.
Posted on 1/30/25 at 5:28 pm to BluegrassBelle
Thanks. Blue. All the women in our family get migraines, but none hemiplegic. I remember my mom’s as being brutal.
Right now she is super tired. We are going to make sure they draw the blood this time for the genetic test.
Right now she is super tired. We are going to make sure they draw the blood this time for the genetic test.
Posted on 1/30/25 at 5:32 pm to Red Drum
quote:
What other questions.
Don’t know if any prophylaxis for it? Or is there anything we can do to help keep her anxiety low when it happens.
Any ideas or stats on it happening to kids? She’s only 10.
At least this time her IV is in her left arm so she can suck her thumb and worry her woobie.
Posted on 1/30/25 at 5:32 pm to NoHoTiger
It's scary for sure, but testing may help firm up the diagnosis so that she's not getting cat scanned or worse every time she has a typical episode.
Posted on 1/30/25 at 5:34 pm to NoHoTiger
There's both abortive and preventive meds, but not sure about her age group. Is she in BR and going to Children's?
Posted on 1/30/25 at 5:35 pm to Red Drum
quote:
not getting cat scanned or worse
ER doc here is trying to avoid the CT since last time everything was clear. all her blood work has already come back clear.
Last time she was stroke protocol so they treated her as a stroke patient until they could rule that out.
We’re just waiting for the transfer to the peds hospital.
Posted on 1/30/25 at 5:37 pm to NoHoTiger
That's reasonable if symptoms have resolved and shes had same symptoms before.
Posted on 1/30/25 at 5:38 pm to Red Drum
quote:
Is she in BR and going to Children's?
We’re actually in L.A. she’ll either go to LA children’s or Kaiser. We went to Kaiser last time and had a great peds neuro team.
Her vitals are: BP 107/74; pulse mid 90s, resp 20, o2 100
ETA: she’s sleeping now. Pulse dropped to 84.
This post was edited on 1/30/25 at 5:40 pm
Posted on 1/30/25 at 5:41 pm to NoHoTiger
I had three episodes in 2021. Saw Brian Murphy at Baton Rouge clinic. He put me on 500mg depakote daily, haven’t had one since. I hope she finds relief, they are a miserable experience.
Posted on 1/30/25 at 5:45 pm to NoHoTiger
Good. There's intermittently a shortage of Peds neuro in BR.. I'm sure they'll determine need for meds (and which strategy) based on frequency of events and maybe the testing.
Posted on 1/30/25 at 5:46 pm to hillrosetiger
Thanks, Hill.
Posted on 1/30/25 at 6:05 pm to NoHoTiger
For adults, the treatment, prognosis, and prevention are typically the same as normal migraines. If her primary MD doesn’t feel comfortable treating it, then y’all need a pediatric neurologist. Would probably stop ER visits. Y’all could probably just call and get an apt or advice anytime it flares up.
Posted on 1/30/25 at 6:08 pm to NoHoTiger
Bona fide genetic hemiplegic migraine is somewhat rare but a lot of people experience weakness during migraines. Prognosis is overall good.
Posted on 1/30/25 at 6:17 pm to NoHoTiger
Had significant weakness, couldn’t talk, and disorientation. Lasted 30-45 minutes. After the 1st episode, I found it helpful to sit down, try to relax and take deep breaths. Depakote works b/c it’s an anti-spasm medication and hemeplegic migraines are basically nerve spasms on one side of the brain that cause the symptoms on the opposite side of the body (according to my doc).
Posted on 1/30/25 at 6:19 pm to NoHoTiger
Not a doc, but I do get hemiplegic migraines and they can be absolutely debilitating. The only thing that works for me, though probably not advisable for a child, is an extremely small dose of psilocybin mushrooms(~80mg dried mushroom powder) as soon as I feel the migraine start. I've had the migraines for 20 years, and just discovered this a few months ago, but it is incredible. My migraines used to last 1-4 entire days, and now they're gone before they even get bad.
Posted on 1/30/25 at 6:20 pm to STLDawg
Thanks to everyone who has responded. We are feeling much better.
It’s so weird. Her first one was 6 months ago once day. The symptoms, time frame and trajectory from onset to resolution was almost exactly the same as well.
She even took a little nap that seems to be a reset button for her. Her memory and confusion seemed to resolve after the nap. Same as last time.
Hoping this will be our last ER visit.
It’s so weird. Her first one was 6 months ago once day. The symptoms, time frame and trajectory from onset to resolution was almost exactly the same as well.
She even took a little nap that seems to be a reset button for her. Her memory and confusion seemed to resolve after the nap. Same as last time.
Hoping this will be our last ER visit.
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