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AVM Survivors Network

Increased Migraines


#1

I had migraines since i was 6 years old. Im now 31.I was first diagnosed with an AVM in 2008. I was 20 at the time and didnt take the diagnosis as seriously as I should have. In 2015 I decided it was time to figure something out. After taking with my neurologist and neurosurgeon we decided to do the embolization. I had 2 embolization procedures and with the second one began losing vision in my left peripheral. Due to the size I was needing at least 3 embolozations. Due to beginning to lose my vision they wanted to look at radiosurgery. When discussing the procedure with neurosurgery and radiology it seemed like a simple enough procedure. There was a chance i would lose more of my vision but i wanted the migraines to end and felt I could adjust if I did lose more of my vision. It has been 6 months since my radiation procedure and honestly I wish I had never had it done. My migraines have increased from 1 to 2 a month to multiple times a week. In the month of October I had 26 migraines. I cant find anything online about other people go through this. I have had MRIs and CT scans with no change to the AVM. I just had an MRA last week and will be going over the results with radiology tomorrow. The worst part is it feels like my doctors have given up on helping me. I dont feel like I have a life anymore. I’m terrified to go to the grocery store and I refuse to drive myself out of town. My husband has been very supportive but I feel it’s only a matter of time before this gets old for him (it’s already getting old for me). I just want the migraines to stop. I am wanting to start a family but have been putting it off until we got this AVM taking care of. I’m afraid I’ll never have that chance. I dont feel like I would be able to be the kind of mom I want to be in my current condition. Heck I cant be the type of wife I want to be. My neurologist has me on 100mg nortriptyline but it doesnt seem to be having much effect. I’m trying to stay positive but it’s really difficult. Please pray I get good news tomorrow.


#2

Hey,

I’m sorry no one got to write back before you got to see the doc. How did it go?

So far as I know, radiotherapy takes a long time to have an effect, so I’m not sure what change you’ll see in the very short term. I do know @corrine has an AVM in her occipital lobe and is currently trying to work through with the doctors what options she has for her second embolization or surgery or radiology and has already lost a portion of her sight.

None of this is easy so I think you’re doing really well to stand up to your challenges. I do think you’re in for a longer haul than you’d ever want, to be honest. So I hope all the best for you.

Very best wishes,

Richard


#3

@Ctheworld87 I am so sorry! I get migraines too. Mine increased after my stroke and AVM .
I did not have gamma
You can send you scans to Barrow in Arizona for review for 150.00
Dr Lawton is the best. They might be able tell you something new,
Also Richard is correct it can take 2-3 years to see results .
Are you on any medication like topamax to prevent migraines? Or get Botox shots ? I get them every 3 months they make less severe and also help with TMJ and my stroke pain. I also take topamax which does seem to help I was getting migraines 4-6 a week now 2-3 a week.
Hugs Angela