← Return to Arteriovenous Malformation (AVM) Survivors and side effects

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@colleenyoung

Welcome to Connect, @auldcelt.
I'm glad you started this discussion on AVM. Here are a couple of links to research being done:
- About Arteriovenous Malformation (AVM) | Aneurysm and AVM Foundation (TAAF) http://www.taafonline.org/am_about.html
- Arteriovenous Malformation Information Page | National Institute of Neurological Disorders and Stroke http://www.ninds.nih.gov/disorders/avms/avms.htm

When did you have the surgery? How are you managing the migraines?

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Replies to "Welcome to Connect, @auldcelt. I'm glad you started this discussion on AVM. Here are a couple..."

My surgery was in 2013 May. I'm seeing a neurologist and I'm being treated wth generic cymbalta. On bad pain days I use Cambia

Since my original response, we've changed up the meds a few times trying to bring the migraines under some control. We've added TRILEPTAL and, VISTARIL to the mix.

Welcome back, @auldcelt. How are the additional medications working for you?

It's hit or miss. Some days it doesn't seem like they do anything and others a headache is bearable. My triggers are weather (not much I can do about that) and stress (and I'm teaching myself to redirect that in other ways).

I had my last surgery almost 2 years ago and yes I got the awful headaches. I drank coffee on and off so not to get a caffeine headache. Even with drinking coffee, I had to deal with the migraines. I found myself using ice on my head as well. That seemed to help better. Recently I discovered by drinking black tea, a cup daily, diminished my headaches. No more coffee for me. Finally, I got the relief I needed from the migraines. Hope this helps.

I am not sure about the function of this blog and if it is to help with information or simply create a group of like diseased patients and family for support. I would like some information however about the use of calcitonin gene related protein antagonist in these migraine like events that occur and have been described after radiation therapy for AVM. the treatments thus far , personally, have been unsatisfying and there is fear in using traditional migraine agents because they can cause constriction of vessels and theoretically, at least , cause problems. I am not even sure if you continue to moderate this board as your last post was 5 years ago. If you do still participate, do you have any sources at Mayo that could help answer this question about the use of CGRP antagonists? thanks