I had been GM free for almost 10 months, but too much potato chips, skipping breakfast, a trileptal dose the day before & wild sex (sorry) gave me a horrible one (aren't they all?) yesterday, it started with a partial one on my arm, which subsided & i was able to call my next door neighbor, but then when she came in a mother of GM came in as well, she said i stopped breathing for a full minute (not so bad because i can hold my breath longer than that) but was almost like 15 mins disoriented, not knowing where or who i was, i was talking but i guess it was nonsense, thing is i have NO recollection of any of it, i blacked out when it was coming up my leg and it was all stiff, till i saw her husband in my dining room like 30 mins later; the other downside is i cant feel my left foot anymore, i can feel the skin but nothing underneath, it hasn't gone away and every GM makes it worst, the first ones i had made me lose feeling in my heel now 4 or 5 years after my whole foot is numb, whenever i see the neuro he just gives me more pills, instead of 2 take 3, =/ so should i be worried and go see a surgeon 'cos im bleeding???
I don't know that there is a correlation between seizures and a bleed; there might be, but lots of folks have seizures and no bleed, I'm guessing.
When my wife was having GM seizures, we were told get plenty of rest, don't skip meals, take your meds regularly, and go very lightly on alcohol. They didn't mention sex, and a few on here have spoken of having seizures following sexual activity.
Unfortunately, getting control of seizures is generally not a fast or simple process.
Any chance you can switch neurologists? They all claim to be seizure specialists but that is not true. http://en.wikipedia.org/wiki/Epileptologist. http://www.aesnet.org/find-a-dr/find-a-doctor-epilepsy-com. Do not be put off by the word epilepsy…it is just a word.
A good friend of mine has had a seizure disorder for 33 years now. She agrees with Ron. Regular meals and regular sleep are really important. Please keep us posted!
I dont know. I have GMs too. Maybe talk to your neurologist about switching to a new medication? I was on Trileptol for a year until I went up so high on it that I started getting double vision. I am usually extremely disoriented after them though. I don’t think necessarily blacking everything out, but I definitely only remember vague details of the day after it occurs. I also had some numbness on the left side of my face & leg after one, but I’m not sure if it was because of the impact of the fall or the seizure itself. I would look into increasing your medicine or switching to something new. If you don’t have a seizure specialist, I would get one. They know more about them than just a regular neurologist. Good luck & I hope things work out for you
Given the numbness, I think somebody should be interested in doing a scan to see if you have had a bleed. Maybe time for a fresh opinion?
I hope (fingers crossed) you are feeling better today. I have a history of having GM and quite often I don't remember much after them. Depending on how long the seizure lasted of course. I have already lost 2 hours where I couldn't even remember my friend taking me to the E.R.
With you not remembering much, doesn't surprise me. Along with the others - I am concerned of your loss of feeling in your foot. I suggest you call your dr and have him run some tests. It is possible you could have had a slight bleed with this one(?) NOT a rupture -- but, some blood may have seeped out from the avm. It's hard to determine. That's why if you are still having problems with your foot, you really should get checked out.
Since you mentioned this happened the day after you had passionate love making. Please be aware that anything, and I do mean ANYTHING, that raises your blood pressure and your pulse rate can put you at risk for a bleed. Passionate sex is very strenuous on the body. The orgasm itself can be dangerous for those of us who have avm's... the blood pressure rises at an alarming rate for that short period of time. That information doesn't come from me, that's what my surgeon told me. Of all things we need to be careful of, we tend to overlook the strain that has on our bodies. That's why everybody sleeps good afterwards.. LOL
Your guess was right (smiles). That is something to be concerned about. I am concerned for him with him not having much feeling in his foot, that he may have some brain damage from this one. I sure hope not but, it seems to indicate that.
I hope he chimes in here soon to let us know how he's doing. It's possible the feeling in his foot came back by now.
Thank you Ron, i have been following your advice, i just thought i could take some sodium once in a while, and i had already forgotten to take one dose before, without much repercussion; i guess i'm not as strong towards 2 or 3 triggers at a time as i was before; but i'll keep following your advice, skipping meals is specially a no no from now on, thanks again!
Hi Barbara; i've been to 2 different neurologists and one neurosurgeon; they all agree on the inoperability; and the huge size (7cm); they also agree i should take trileptal (oxcarbazepine), one during the morning and one at night, for the rest of my life for the seizures, thats it! thats all they said! no mention about skipping meals, salt, sex, nothing, only go easy on the alcohol; thanks to Ron and Madere i now know about lots of triggers, that i can pretty much avoid, but the "experts" didn't mention any of them; i have to go to another town maybe to look for another neuro; i live in SoCal, anyone nearby would be helpful; i'll look thank you! =]
Thank you mdiam; yeah mine is my right parietal & occipital lobe so it messes up the left side =( i dont have any side effects to note of on trileptal, idk why but they just don't affect my CNS as much as other people; but taking them regularly and then stopping for whatever reason can bring about a GM; not to mention the liver damage, so they're kinda like double edged swords, still i was GM free for 10 months which is just wonderful! cos' i know you know they don't feel any good, and with the added weight of the AVM, well, i just prepare to die every time i have one lol; i will try to find a seizure specialist, thank you for your advice; maybe that's just what i need.
Thanks Madere; i have one scan scheduled, im just scared of the angiogram lol but i'll man up to it =D and the only new opinion might be from out of town, i heard good things about AZ neuro's i hope one can tell me something good, or at least something true about my head.
Hi eileen, im scheduled to see my neurologist on monday, but last january when i had the WORST GM i had ever had (i was conscious for a looooong time and my left side started turning the other way around from my joints kinda like the exorcist, it was VERY painful!) and all he said was, "have you been taking your meds?", im like, "no", and he wrote me the same prescription as before; so im not just assuming, this one was far lighter than that next to last one, the other ones i needed like a whole week to completely return to this world, and with this one i was up and about normally the next day (with the headache of course, ibuprofen helps in 400 mg), but i'll tell you how it goes on monday, thanks for your concern! n.n
Hi Ben, yeah the foot is still the same, im up to see the neuro and to get an angiogram next week, so i'll tell you if i had a bleed or not, hopefully, and im really bummed out about the physical activity, because i am an active person, so it's just like telling me not to open the top cupboard with all the candy; it's there you can see it you just cant touch it lol; i'll try not to overly exhaust myself next time or at least not put 2 or more triggers in the same day in my daily schedule lol, i actually thought it was good for you, like the ultimate exercise but apparently to those without AVM's =( thank you for your concern Ben, i'll tell you how the scan went.
I agree. Having a bleed causes frequent seizures. I've had issues with grand mal seizures. I was given another cat scan to view the bleeding.