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AVM Survivors Network

AVMs and Headaches again

Is it just me, after being diagnosed with my AVM, i started getting really bad headaches. I have been desperatly trying to get help from the doctors. But for some reason, they refuse to blame the AVM. I am now being told I have migraine. I never suffered from headaches before except after a night on the beer, but since I had a tonic clonic seizure, i’ve suffered severe headaches. I don’t believe the migraine theory, but don’t know what else to do. Anybody have any thoughts on this…??

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I had severe headaches for about a year before I found out about my AVM. One of co-workers said " you need to get that checked out. It’s not normal to have headaches like that everyday. " I never did until I had a seizure and had to go to the hospital. My mother had migraines. When I was young I believe I probably did too. I remember getting really agitated at things and light hurting my eyes, and getting nauseated and throwing up. After I vomited it seem to ease the pressure and when I woke up it would be gone. The headaches are not as often now and even if I do have them they are minor. I very rarely have to take a pain pill to get rid of it. Probably because my AVM is much smaller than before. Hoping for good news in November. I have another angiogram. I have been fighting this thing since October of 2012.

Good luck, hope all goes well. I go to Sheffield on June 12th to start my treatment…

I suffered with ‘migraines’ for about 15 years on a regular basis prior to my AVM rupture. Visual disturbances, severe pain, nausea, vomiting. I could not function when they happened. Did not respond to meds well. The day my AVM ruptured, I lost half my vision, had severe pain , nausea and vomiting. Thought I was having an abnormally severe migraine. Since the AVM surgery in '13, I have not had one single migraine. Doctors now believe my ‘migraines’ were in fact leakage from the twisted vessels. What annoys me the most, is that I asked my neurologist back in 2010 to do a scan since they had gotten worse and more often. He said it wasn’t necessary. I totally believe your headaches could be AVM related. Good luck, I hope this helps!

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Thank you Barbo…

Mick,

I can’t believe the time you are having with your doctors.

Have them go and find Migraine by Oliver Sacks in the library. Sacks was a neurologist in the Bronx and the subject of the film Awakenings (the part played by Robin Williams) if you remember that, by my reckoning an eminent neurologist. In his book on migraine, he states something along the lines of (I’ve lent my copy out, so I don’t have it to hand)…

Migraine aura almost always transgress from one hemisphere to the other. Any apparent migraine aura that remains stubbornly unilateral and does not make such progress across the body should be treated with suspicion. While migraine-like symptoms may be displayed, some more sinister thing may be at play, such as a tumour or arteriovenous malformation.

Sacks defines migraine as a benign common ailment (migraine is the third most common complaint in mankind) that affects a large portion of any population and, as true migraine, is not to be feared. However, where something is driving migraine-like symptoms, the suspicion and further evaluation is warranted.

I completely believe that if you met Sacks today (he passed away a few years ago, so you can’t) he would describe your “migraine” as being only “migraine-like” and he would be convinced of the agency of your AVM in its appearance.

The sheer number of people here who have migraines or migraine-like symptoms concurs with his view. The general prevalence should be about 1 in 7 people. I am sure we have a higher prevalence here.

Complete balls, my friend.

Richard

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Hi Mickeboy. It may be a good idea for you to get a CT scan. Before I knew I had an AVM I used to get severe headaches caused by pressure on my brain from CSF. Docs fobbed me off with ‘its migraine’ for years. Good luck.

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I had an avm rupture in 2014 which caused a hemorrhage. Since then, I have a had a headache everyday. The only relief I get is with pain medicine. I have tried over 30 different kinds of medications and can not find anything other than pain medicine. My neurologist says i should have no pain and says it is a mental issue. My primary care physician has helped me but we both are not for sure what is going on. My theory, my brain was damaged so badly that the pain is just a new way of life (like knee surgery, things may look ok but you deal with knee pain at times). I know there has to be a better way to getting relief but until a doctor deals with an avm personally, then they will never understand. I hope you can find a resolution and if you do, let me know. The only thing I can say is that I love the doctors and I am so thankful that God has given them to us, but they do not have the answer to everything.

God is good all the time.

Zac Steinfeldt

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