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AVM Survivors Network

Headaches everyday causing dystonia is this normal?

I found out through MRI a few months ago I have an Avm. Haven’t seen neuro because of covid. Won’t see one for a year or more. Headaches are getting worse. I feel panicky and keep suffering with dystonia because the headaches are dailly and are that bad. I also have severe nerve pain and fatigue.
My question is: my headaches are daily and causing dystonia. Is this normal?

It would seem like that is too long to wait, considering you have symptoms.

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Definitely too long to wait. Where do you live?

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I see you’re in Canada, which part?

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Ok. Thank you. I’m new to this site. Since I have fibromyalgia/nerve pain my doctor says the headaches is just the fibro. Yet I haven’t met anyone else with fibro who are suffering like this and then find this Avm

I live in burnaby, BC

Well, focus on one thing at a time. It’s possible that your other symptoms could be related to your AVM though. I would see a good neuro interventional radiologist. Have you reached out to anyone yet regarding scheduling? They may be able to see you soon, or at least get you scheduled for an angiogram or more specific imaging to see what’s going on. It’s important to find out before anything worse happens. I’m not trying to scare you or make you anxious, you shouldn’t be, but you should get checked out. I’ve heard UBC is pretty good. There are good hospitals in Vancouver, but as I’m in the States, and on the other side of the continent in NY, I don’t have any personal experience.

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Jaylah, I see you are from the beautiful province of BC! I agree that over a year is a long time to wait. I’m in Manitoba and can tell you that at Winnipeg Health Science Centre they are one of the best in the country in the neuro world. A lot of reasons why, they do out of province referrals and I believe they would see you a whole lot faster. There is a process for this on the web site. Might be worth some consideration. John

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Thank you for your feedback and time. I feel comforted and understood. Which helps a lot.
I will reach out to the neurologist whom I am waiting to see to ask to be put on the wait list.
Thanks so much for your input :pray:

I should clarify I end up with dystonia once in a while. Like once a week. Usually after driving for 30 min or something like that. But doesn’t take much these days. Now that things are changing. I will try to see where I am on the wait list. Thanks you🙏

The good news is that you can get better. I just worry that you might get worse while waiting. I had that happen to me once, and it was fairly sudden.

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Sounds like you have dealt with a lot.

I found out about this I think like the first week or so into Covid lol :stuck_out_tongue_closed_eyes:
Life is interesting sometimes. It can always be worse I hear :face_with_raised_eyebrow: idk. Just trying to sound optimistic. Thank you for the feedback and for responding so much.
Much appreciated and I hope you are well :ok_hand::pray: