My name is Catherine, I turned 25 yesterday and I only recently found this forum. My AVM history is in my profile but I just wanted to ask whether anyone else gets seizures while exercising? (My ‘seizure type’ has changed from my ‘arm shaking’ pre-radiosurgery to left hand side paralysis post surgery.)
Because of this, I haven’t been able to run, do martial arts, even light exercising and it frustrates me so much. It used to make me feel good, it was a huge part of my life and since the AVM, I have put on weight, ALWAYS feel tired and sluggish (medication + lack of exercise) and I’ve lost that vitality feeling. I miss it so much and I need that outlet for all my frustrations. I’m such a physical person.
The doctors say that exercise shouldn’t cause seizures but over 3 years of experience tells me that 9 out of 10 times I attempt to work out, that it does.
Anyone experience this?
I don’t get Seizures Catherin, but I have drama’s walking (keeping in a straight line, faster is easier) I’ve been out of hospital 5 years now, and I still get tired. I’ve just accepted the fact that i need about 9 hours sleep a night, and I’m normally good. I’d be frustrated too. I really only became physical, after the operation, to help my strength and coordination. Do you get it doing all exersize? I was doing shoulder exercises that caused a constant massive twitch, until I stopped for a week. Maybe there is exercises you can do, that don’t cause seizures?
Feeling tired all the time takes a toll on all aspects of your life but I’ve too accepted the fact that I need a LOT of sleep each night, plus a nap or two during the day.
Everyone tells me to just do walking but to be honest, that’s really boring for me as I’m more into intense things. And the yoga thing just doesn’t cut it. I figure all the hanging upside down wouldn’t be too good for my head anyway
Thank you and I hope things improve for you.
I so hope the news is good on Thur and will be waiting to hear like everyone else with fingers crossed.
I have a spinal avm so things might be different for me…
Since my AVM is likely to stay in my spine for the rest of my life one doctor told me “Don’t get fat!” because it would raise blood pressure, increasing the risk of a bleed. she also told me to start swimming when I was in recovery from my hemorrhage… but I live in Florida which might make that easier for me.
I did a lot of things that could be questionable-- rock climbing (quite an impact when you fall, even on the pads below you) and used to teach cardio kickboxing. My neurosurgeon said I can go back to doing everything but I feel fatigued more easily than I used to when doing them.
I’ve had to slow things down, which was frustrating and learned to enjoy yoga more. Ashtanga yoga class will get your heart pumping! A good pilates class can be intense. (I teach pilates now to get some energy out and make it tough for myself and my students ) Biking is good, too. I only feel scared/jarred or pressure where my avm is when I go over bumps on my road bike (no shock absorption).
I’d say don’t be afraid to try new things and listen to your body. It will tell you when you’re doing something it doesn’t like.
Before i was diagnosed with my AVM i was a fairly active guy myself,I did weight training 3 times a week and walking about 10kms twice a week.Unfortunately i was told the weight training had to stop but was allowed to walk but it was not recommended i walk as far as usual.
Its been around 4½ months now since my AVM obliteration and last week i started walking again but not as far as before, and even did one weight training session but also with a quarter to half of the weights i used to use.
It felt strange at times as my head started to tingle where the AVM was located previously.I kinda got worried and wondered wether it was safe to keep going but pressed on without any problems.
So i guess to answer your question from my AVM experience,no seizures for me.
Just hang in there,eventually everything will work out fine.Youll be back to your old fitness ruitine,and youll wonder why you ever worried about it.
Take care Theo
Within the last two days, I did two 40 minute workouts followed by weights
I know I probably shouldn’t but I can’t help it.
Even when I was first diagnosed, I would be running or boxing at the gym, having a seizure and didn’t stop. I remember boxing and I was having a seizure in my arm and I didn’t care, just kept hitting the bag and my hand would keep hitting me in the head while is spasmed aha.
Then I started to care. I guess because mentally now, I don’t have that barrier and I can just go for it (even though it’s not confirmed 100% it’s gone). I always have to go overboard though.
I hope you can get back to being active
Haha you sound just as ignorant as me lol,when your addicted you cant help it.I was told i should never do heavy weight training again,but i cant not help but push myself,one thing i hate is going backwards!
The way i was looking at it was, if i could push myself as hard as i was before whilst the AVM and anyurisims existed and not have it bleed then i should be right to keep going,but that really inst the right attitude that i should have.
Im lucky to still be here after what i used to do,so i should probably tame it down a little,and cherish what i have now