Hi
My son started to have episodes similar to a stroke, 2 years after his AVM was removed and they put a synthetic skull cap.
It is pretty scary because one never knows if it is another stroke or something else. A neurologist told him it was hemiplegic migraine with aura ( where the arms, mouth and speech are impaired for minutes or hours followed by headache)
Has anyone in the group suffered from this?
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Hi IGY, I’m sad to hear your son started having those symptoms.
I won’t venture a guess as to what they are. You are certainly in “expert/specialized doctor” territory.
I have grand mal seizures due to AVM removal/scar tissue. They sound similar to what your son has experienced.
He’s going to have restrictions/limitations for awhile so it’s best to try to maximize his quality of life. Concentrate on the zillions of things he CAN do and maybe find new hobbies/pursuits to enrich his life safely.
If your son’s like I was, you’ll both be called on to improve your skill of being patient.
BTW, I didn’t really address your question but I hope this helps. Best wishes, Greg
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Dear Greg
Thanks for your prompt reply.
The doctors have done a series of EEGs but found no sign of seizures. They say it is hemiplegic migraine but it is quite scary because it mimics a stroke.
We are trying to understand whether other people who had AVM surgery also have experience of this and what kind of treatment they are undergoing to prevent it.
Do you take medication for that?
I wish you the very best and hope for your life.
IGY
Hi IGY, I don’t have any knowledge of migraines but I do take lamotragine for the seizures. I had a bad experience with kepra and other meds. Be vigilant because there can be rough side-effects and there are lots of options now. Best wishes, Greg
Hi. I think the only thing I can add is to say that a few years ago, I read the first half of Migraine by Oliver Sacks. It was written a long time ago (1970s, I think) but in there, much of the description that Sacks gives for Migraine really does cross a whole spectrum of symptoms. What he describes gets so close to seizure-like activity that you or I would struggle to tell one from the other. There is a clear distinction between them but I don’t remember what it was and I’ve given my copy to a friend.
I think what I’m saying is that I’m corroborating (through what I’ve read in the book) your doctor’s view that it could be migraine-related rather than seizure-related. While doctors seem to regularly reject the idea that migraine is related to AVMs, there seem to be a decent percentage of members here who have migraine-like symptoms.
I hope this info might help. The book may be useful to you to read / borrow.
Best wishes,
Richard
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Thanks Greg and Dick,
The doctors say that hemiplegic migraine is not a seizure. At the AE they recommended that he sees a neurologist and take riboflavin and magnesium to help with sleep and tiredness.
They call it hemiplegic migraine with aura. The aura can be the paralysis of limbs, distorted mouth, vision impairment and these aura symptoms precede the migraine.We are baffled that the literature about hemiplegic migraine never mentions stroke as a cause.
I will try to get Sack’s book.
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I’ve had these symptoms. I had them post heamorrage. I still get them but not very often thank God. They were very scary in the beginning. I have a personal alarm that contacts a company that calls an ambulance if I want it. They also call family who come up if 'm not sure what’s happening. What I usually do is I wait it out, and see if the symptoms travel, so my speech will be effected, then probably my hand within minutes usually, then if it’s bad than my leg gets weak too. If the symptoms travel ie the speech improves while my hand is bad or my leg then I know it’s a migraine. I used to never get headaches after them but now I do, they can last a day or two if it’s a bad one. The movement usually resolve within about an hour. I find just sitting down if I can and waiting it out while trying to remain calm, which gets easier over time, is the best option for me. I was told AED’s are used to treat it by a doctor but I don’t want to do that personally, I’d rather deal with the odd migraine.
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Really helpful.
One of the other things that Sacks says in his book is that it is typical for migraine to transgress from one side of the body to the other; in fact his view is that any apparent migraine that doesn’t transit is to be viewed with suspicion (as perhaps being driven by some underlying cause).