Hi, all-
This can be quite personal, but there seems to be a lot of comments about medications that people are on as a result of an AVM bleed or complication or surgery. I was curious about whether or not you would feel comfortable listing what you’re on and why?
I know its quite private. I’d prefer to get a consensus before we do this.
Thoughts?
Brian
(Admins: is there a way to do a quick vote on this before postings begin? No hard feelings either way.)
I somehow think if most of us were concerned about our privacy we wouldn’t be here !
We all seem to be so open about sharing our experiences, so perhaps medication won’t be any different. It’s cool with me. Don’t care who knows what I take or why!
Trish said:
I somehow think if most of us were concerned about our privacy we wouldn’t be here !We all seem to be so open about sharing our experiences, so perhaps medication won’t be any different. It’s cool with me. Don’t care who knows what I take or why!
i,m glad you brought this up. my avm has given my physical body a whole lot of challenges and l have and still am taking several medications daily.lt was a battle every day popping these pills and l had a few temper tantrums!!! with my neurologist before he finally stared me down and said"look there is nothing that can be done surgically so if you want any quality of life then you need to be medicated" – put like that i decided i’d better get on with the life that l have left and resigned to a daily regiment of pills feeling very blessed that l can still walk and move. l’d be happy to discuss all my meds.
Ditto, Trish…I feel the same way! Ask away, Brian!
I’ll list my meds, even though I don’t think that the two things that I’m on right now have much to do with the avm. They gave me different things in the hospital, once I went home, I was back on the things I was on before.
Peace,
Ameenah
I’ve been following AVMs and Epilepsy since my wife’s AVM showed up (via grand mal seizures) in 1991 and my son’s epilepsy showed up about 1995.
One thing that I’ve consistently heard from a whole lot of AVMers and seizure suffers is that few if any of the patients have the same results with the same medications. And in many cases (My Son’s for instance) one anti-S med would work for 2 yrs, then stop working. ???
I hear “I continued to have seizures until I took XXXXX–it worked.” Another patient will respond “I took XXXXX and it didn’t work for me.”
A lot of the meds have some real scary potential side effects, especially for a young person who would take the meds a long time. I think there are some correlations with type of seizures (petite, grand mal, complex partial, etc) and which meds the neuro’s try FIRST. I think they also try to start with the OLDEST, most proven med, with the least side effects. If that doesn’t work, they progress to newer, riskier ones. In my Son’s case, there were some Rx’s that he flat out said “NO, the potential side effects are too risky to me.”
So, I’m not sure how much value there is to all 1000 of us posting our meds via a forum post. I doubt anyone would read more than 20 or so before dozing off. BUT, and I don’t know how it could be done, I think it would be neat if there were a survey section where some, most or all of us could take a short survey by clicking boxes to show:
**AVM
*** (Not sure what other issues there are)
***Bleed
***No Bleed
***Conventional Surgery
***Embolization
****Gamma Knife
***Proton Beam Radiation
***Cyberknife
*** No Surgery
Meds taken:
Dilantin
Carbetrol (Tegretol)
Keppra
Lamitical
(That’s all I can think of–know there is more)
AVM gone
AVM not gone
THEN, if enough people took the survey, MAYBE Ben and his “staff” could put the data together so that a member could look, for instance, that XXX people have an AVM, not bled, no surgery, and a breakdown by percentage of the meds taken by that group.
Again, I don’t think the data would be that helpful for a member to run to his neuro and say “Hey, 50% of the AVMers like me take XXXX.” But I do think we have enough members, it might be of interest.
Sorry for thinking of this Ben…I don’t know if this is even possible, and I sure don’t want to lay more work on you
Ron, ks
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