Hello -some thoughts after 40 years of AVM awareness

I was born with two cranial AVMs (temporal/parietal) 64 years ago, and have never had a serious bleed. At 25 I ended up in an ER after a seizure, wondering what that was all about. A year later, after a week of tests and a long book, I found out that I had an AVM too deep to be treated by surgery. In fact, years later, with improved imaging, I learned that I had two AVMs. I was put on Dilantin for 30 years. I’ve had 3 Linac treatments, but still have both AVMs (I think). I’m surprised that I don’t glow in the dark from all of the radiation from the Linac, CT scans and angiograms, but I must be strong (or too damaged to know any better). The AVMs didn’t effect my life adversely.

What I’ve learned:
-I’ve been very lucky. I never forget that. Everyone with an AVM has a unique experience -often fatal.
-My first advice from the Neurosurgeon: “No aspirin, no alcohol”. Good advice, I’m still here!
-Dilantin wasn’t doing anything (good) in my case. Once I weaned myself from it, I felt better and have been off all meds for 10 years. I still have mild auras, generally from small barometric changes. Dilantin was thinning my teeth & bones -but I’m off it. Since quitting, I’ve had zero seizures. In my case, I think it actually lowered the threshold.
-The oxygen/CO2 balance is critical -an imbalance (from lack of fresh air) will trigger auras/seizures in my case. Oxygen is what can stop an aura from progressing to a grand mal seizure, so getting my breathing steady is the first thing I address. This always works, and I bounce back quickly.
-Coffee was a seizure/aura trigger (vasoconstrictor), so I cut it out completely. Black tea is ok.
-A single, daily cup of unsweetened natural, non-dutched cacao (vasodilator) with hot water improved my thinking, mood and energy more than anything else I’ve tried (+ sound sleep & mild exercise). It’s a mild antidepressant, too…can’t hurt. It’s good for the entire vascular system. I’ve had ten years to test it -it works and is relatively cheap.

All of that medical imaging actually got me started on a new career in 3D (architectural) imaging. I’m still working and driving as I approach 65. I hope this is helpful. Be easy on yourself !
Berkeley, CA

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What a great story! It sounds like you’ve done alot of research and it has helped you be able to manage your health.

I enjoyed that read greatly as well. I’ve really modified my diet, exercise and caffeine intake since my beed. Despite the bleed, I’m getting healthier and healthier from the changes I’ve made, while always aware to be careful. Thank so much for your post!

great post 7man I only disagree with one part :

-I’ve been very lucky. I never forget that. Everyone with an AVM has a unique experience -often fatal

You have been very lucky on that I agree but often Fatal , I’m not so sure as a long term member here and having read thousands of posts over the years I think perhaps fatal 40 years ago was the case but in the modern era there are so many things people can do and doctors, small lifestyle changes that you mention are great and if only more took this advice they would be healthier ! :slight_smile: , Take care and thanks again for your post, Its always good to read more success stories.


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Thanks for the replies (and kind words).
Perhaps “sometimes” should replace “often”. I am concerned, however, that many people will not have access to wonderful modern era treatments, due to the current disarray of our medical system. Getting to an experienced specialist won’t be easy or affordable, unless our health system improves soon.

Vascular health should be what each of us with an AVM should be thinking about, but it’s seldom the focus. No physician ever asked me about my diet, or really discussed anticonvulsants sensibly. I was told ‘just take them’ forever. It was my dentist, who compared my dental x-rays over decades, who suggested that I reevaluate what Dilantin was actually doing to the rest of my skeleton (after seeing the changes in my teeth). Understanding the respiratory and vascular system fully, helped me to pay more attention to something as mundane as breathing. If my simple steps did not stop my rare seizures, I would probably go back to medications (no one wants seizures), but I’m doing very well without a ‘safety net’ that really didn’t work to begin with. We are told that seizures are an ‘electrical’ problem that medications will fix, when it might be an oxygen transport issue where lungs and vascular systems come into play. Yes, I’m over simplifying things, but give it some thought, and question the experts.

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I had an AVM removed in 1959 by craniotomy. It bled and I was in a coma a week. I did almost die I remember being told. So back then it was often fatal. I do not know what the statistics are for now, but they must be better.