yea im fighting to really stay off hardcore meds, i went to see a neurologist because i was having headaches everyday. come to find out my body had become dependant on the tylonel, ibuprofen and excederan i was taking everyday. so i detoxed from all of that, which was horrible. so she wanted to put me on some other med that i was going to have to monitor my liver with and i told her i wanted to stay away from stuff that was going to mess with my body.
my problem now is, i cant really let my emotions go. if i get to hype about something and my blood pressure gets up ill have a headache for about 3 days
Rough stuff. Controlling those emotions is hard for me too. Even after successful treatment. It gets better with constant effort and attention, but they don’t go away. Especially these days. Don’t need the rona either. Coughing and sneezing was also an instant headache…then I had to chill my pressure down like you say. This condition is complicated eh? Keep at it my man…be aware and help yourself as much as possible. Most folks can’t understand. But some of us do. I think about Nikki Lilly a ton. She gave me strength…If you don’t know of her…check her out on youtube. Incredible AVM warrior.
Great conversation you’re having here. Just to answer a couple of your questions…
Yes, it’s fine to share photos or medical images. The only caveat I’d give is to make sure you cut out any personal information from the images before sharing. I think everything above is nicely anonymous, so that’s great.
Don’t feel put out if your AVM is smaller than someone else’s. I would say this forum is not a place for judging others or ourselves. The biggest impact of these things is the emotional impact of a change to our lives, change to expectations, hopes as well as some hard realities for some, so it doesn’t matter if you have a very modest AVM, it can still worry you to bits and we are all here for everyone – no judgement at all.
My neurologist referred to it has “medium-large” at 3.5cm x 1.7cm. It bunkers down towards the right motor cortex region of the brain. However, when I had my 3 bleeds, they were situated closer to the top of the brain, closer to the temporal lobe.
I remember at the time I was 19 and decided to take this picture because you can see my skull and I thought that was so cool! It really helped me absorb the impact of the news that this thing was causing the pressure in my brain. I look at it once and a while.
I personally use this picture to see how far I’ve come and how much left I have to overcome, and what I have to live with. To me it’s a symbol of patience in a way. I hope that makes sense!
