Had my first seizure this weekend - 4 months after my Gamma Knife. Let me tell you, it will really put things into perspective for ya. I was released from the hospital yesterday, my seizure was Saturday morning at work. It was a Grand Mal. Still shaken from it, but don't remember a thing from it. Now the docs prescribed Vimpat which isn't covered under my insurance, cna't afford it out of pocket obviously, and now, no one can locate the doctors who prescribed this crap to me...so now I'm without any seizure meds and scared to death...waiting on a call from someone trying to find out somehing...
Sorry to hear about your seizure, I'm waiting on getting radiation myself. I've never had a seizure and it scares me, cause I see lots of people have them after getting radiation. So how was the seizure? Did doctors tell u u might get then once having radiation?
The doctors didn't tell me anything - I never had a seizure in my life, never expected to have one. I have to see an epilepsy specialist Thursday and I guess I'll know more then.
Hopeful Hopefully your dr can prescribe an anti-S med that is covered by your insurance. In the meantime, here are some general tips for avoiding seizures, as told to us by our DRs.
Don't skip meals.
Don't get overly tired or stressed (yeah, like this one is really easy, NOT)
If you drink, do so only in moderation.
Hope this helps.
Ron, KS
Oh Zilly74 I am so sorry about the Grand Mal. There are lots of anti-seizure meds out there. I hope you get a call back soon!
Thanks Ron. Yes, the stress part is the hardest to take. There is a lot of it in my life. I work ALOT. Now I am not alot to legally drive in my state for the next 6 months.I do not drink, so that helps. What they did is up my topomax and added a few others to my cocktail, but I see a specialist (epilepsy) tomorrow. So I'll update you all tomorrow. Thanks for the support, I really appreciate it. It's really scary. No one prepared me for seizures, no warnings, nothing. Swelling on the brain where the avm is, swelling behind the optic nerves...stress...whammo. It was very scary. I think the scariest is not remembering any of it.
Thanks Barbara :) I did get a call back, an emergency appointment and I'll update tomorrow :)
It is just as well you do not remember it…the brain is protecting you! It would only make you unhappy. I am so glad you have an appt. with a seizure specialist. Every neurologist thinks they are one but they are not. Please keep us informed!
Not one of my surgeons told me there would be a risk of seizure - not one. None of them mentioned it, they just totally left it out. So to avoid stroke, they give me epileptic fits. I'm in rare form today, I see the specialists this morning. So I cannot wait for all of this to go down.
Hi Zilly74,
Not to defend your medical team, but you have to look at it from their perspective to see why the way they are.
We also had some (what we thought were) serious side effects from the surgeries. One of the great RNs we worked with said these words to us, which really made sense: "You have to understand that 'success' to the surgeons is you are NOT dead and that whatever they were working on you for is no longer a threat. Never mind that you might have side issues, #1 is still you are not dead!"
That helped us put it in perspective. Yeah, seizures suck, but you ain't dead (grin).
Hope this helps.
Ron, KS
I remember after I woke up from the embolisation, the left side of my face was paralyzed, my left hand was curled up like a claw and my left eye would roll around at random. One of the doctors explained that the surgeon had my life. Meaning, nothing else matters.
Yeah, that is how they see it. However, their reports are conflicting. 1/2 the team says there is swelling, the other 1/2 says there isn't. 1/2 the team says to do nothing but walk, the other 1/2 says live my life to the fullest. Now I'm at high risk of seizures and balh, blah, blah. They adjusted my meds and I'm to take it easy. I can't work job - I can't drive...I am just angry at this time. I should have never let them touch me. I Was normal, healthy, active, never knew I had this my entire life. I let them touch me, now my whole life has changed and I hate it. They really screwed my life up.
Hi Zilly74. I am so sorry that you feel the surgeons screwed your life up. With the passage of time will you have less of a chance of having seizures? I never knew that having radiation increased the risk of seizures and I’ve been on this site for at least 6 months.
Well thank you for keep us updated. Dealing with insurance issues can be frustrating. I just found out mine will not be accepted at Walgreens anymore. Oh well...Wal-Mart here I come...LOL.
Wendy, I don't know. They didn't even tell me I was at risk of seizure after the surgery. I never had one - ever in my life. Only 4 months after the surgery did I have the grand mal. They now say I'm at a high risk naturally from the avm- not just from the surgery itself, in fact, they say "they" are at a loss as to why I am having the symptoms I'm having and why I had the seizure...only to say it is because of the avm itself.
Hi Zilly74. I am confused. If you had the AVM fixed how can they say it is from the AVM. I thought any time you subject the brain the trauma it is possible to have seizures. It makes more sense to me that you had a seizure from the radiation or from the swelling. In any event it is, unfortunately, a moot point. Hopefully, when the swelling in your brain subsides, you will be free from seizures. In the meantime, I hope you find some anti-seizure medicine with no side effects. It stinks that you have to endure this. I really wish they would find out why so many people have AVMs.
Sorry to hear about this news but please go and see a Dr immediately and get you the right medication. Hope it works out for you and God bless.
My avm isn't "fixed" until they go in and take it out. As far as I'm concerned, they aren't touching me again, whether with an angiogram or gamma knife. I'm done with these science-fiction people. I'll stay with the meds.
That's been taken care of :) Thanks!
Sorry to hear about your seizure. I had a grand mal seizure and that’s how they found the avm. Being epileptic upsets me more than the avm, especially the meds. I take oxcarbezepine which seems to do the trick. Was your avm unruptured. I am wondering this because you say that before the GKS you were fine. I am fine apart from the epilepsy and am really undecided about having the GKS as a lot of people seem to have lot worse problems after.