Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
Hi, I have been travelling reasonably well with the tegretol & gabapentin both controlling the seizures to a good level. Have been on both for 2 months now.
I had a bad ms flare up in May which started with optic neuritis & then affected my left side as well, eyes took about 3 weeks before I got treatment (my fault partly), was in hospital for a few days for treatment & had 2 seizures that were seen.
I m having real memory & confusion problems & don't know if this is from medications, seizures that I don't realise I am having (absence one's mainly), or why. It is rally noticeable to those that know me, I can't follow conversations easily if they are long, have to keep stopping to check I heard right for it to go into my brain - even then struggle to keep what we are talking about in my brain right.
I can't remember how to do a lot of "normal" things & often have to ask hubby how to do something, where something is & what was I doing, he has said it is a lot more noticeable in the last month or 2 as well which is when I had flare up & before when I was getting worse.
In the last week alone I have had 2 witnessed seizures & I suspect other short one's from various confusion times & pain in neck & back. On Monday night hubby got home & couldn't get me to respond to him. He could tell I wasn't asleep & I was sitting up stiffly in the chair usually sign of them, & when I did respond he was yelling at me & I couldn't understand why he was yelling or upset/mad at me. When he told me I hadn't responded/roused for more than 5 mins & he wasn't sure if he was going to have to call an ambulance for me. Then on Friday at work one of my colleagues noticed that i seemed to be head down & then didn't respond to him. When I did respond I wasn't answering properly so he got boss - then first aid officer. Ended up sending me home by taxi as I wasn't answering properly & just said felt like I had a "wooly head". I was very tired when I got home & not functioned well.
Last week I went to the pain clinic & they have taken me off the gabentin & stay on same dose of tegretol, this is regardless of the seizures I have been having. I hope it doesn't make them get any worse or often as that would be hard. I have already been told not to drive due to combination of the seizures & the ms effects of numb feet but mainly the seizures & confusion etc after.
The hardest part is that the seizures don't show on eeg's but others have witnessed them, including friends, hubby & work people now. Apparently part of ms too.
Sorry if this has rambled, it has probably taken me 1 hour to write it with a lot of "mental blanks" in there where I can't remember what I was going to write & struggled with spelling.
I am really struggling with the fact that the seizures increasing alongside the ms symptoms also getting worse.
I am still having trouble with the right eye closing & very little vision (optic neuritis), left side very bad spasms & weakness etc. Nothing is functioning right, & I am losing the thought process as well as speech a lot of time too.
How much more can these conditions take from me? I use an electric wheelchair to get to work, scooter to do shopping etc, walker for shorter bits around home & if driving just to one or 2 shops. have afo's (foot supports) for both legs, can't see properly, talk properly, think clearly & in pain constantly. I am so fed up with it all & getting to point that I don't know how to cope any more with anything new/challenging.
Feeling really down about it all & no one seems to understand really.
Dont know if this made sense at all or not.
I had a bad ms flare up in May which started with optic neuritis & then affected my left side as well, eyes took about 3 weeks before I got treatment (my fault partly), was in hospital for a few days for treatment & had 2 seizures that were seen.
I m having real memory & confusion problems & don't know if this is from medications, seizures that I don't realise I am having (absence one's mainly), or why. It is rally noticeable to those that know me, I can't follow conversations easily if they are long, have to keep stopping to check I heard right for it to go into my brain - even then struggle to keep what we are talking about in my brain right.
I can't remember how to do a lot of "normal" things & often have to ask hubby how to do something, where something is & what was I doing, he has said it is a lot more noticeable in the last month or 2 as well which is when I had flare up & before when I was getting worse.
In the last week alone I have had 2 witnessed seizures & I suspect other short one's from various confusion times & pain in neck & back. On Monday night hubby got home & couldn't get me to respond to him. He could tell I wasn't asleep & I was sitting up stiffly in the chair usually sign of them, & when I did respond he was yelling at me & I couldn't understand why he was yelling or upset/mad at me. When he told me I hadn't responded/roused for more than 5 mins & he wasn't sure if he was going to have to call an ambulance for me. Then on Friday at work one of my colleagues noticed that i seemed to be head down & then didn't respond to him. When I did respond I wasn't answering properly so he got boss - then first aid officer. Ended up sending me home by taxi as I wasn't answering properly & just said felt like I had a "wooly head". I was very tired when I got home & not functioned well.
Last week I went to the pain clinic & they have taken me off the gabentin & stay on same dose of tegretol, this is regardless of the seizures I have been having. I hope it doesn't make them get any worse or often as that would be hard. I have already been told not to drive due to combination of the seizures & the ms effects of numb feet but mainly the seizures & confusion etc after.
The hardest part is that the seizures don't show on eeg's but others have witnessed them, including friends, hubby & work people now. Apparently part of ms too.
Sorry if this has rambled, it has probably taken me 1 hour to write it with a lot of "mental blanks" in there where I can't remember what I was going to write & struggled with spelling.
I am really struggling with the fact that the seizures increasing alongside the ms symptoms also getting worse.
I am still having trouble with the right eye closing & very little vision (optic neuritis), left side very bad spasms & weakness etc. Nothing is functioning right, & I am losing the thought process as well as speech a lot of time too.
How much more can these conditions take from me? I use an electric wheelchair to get to work, scooter to do shopping etc, walker for shorter bits around home & if driving just to one or 2 shops. have afo's (foot supports) for both legs, can't see properly, talk properly, think clearly & in pain constantly. I am so fed up with it all & getting to point that I don't know how to cope any more with anything new/challenging.
Feeling really down about it all & no one seems to understand really.
Dont know if this made sense at all or not.
What you wrote in your post makes perfect sense. When I was on tegretol and topamax, the same things happened, people would raise their voices, emphasize things, constantly bring me back to specific point in the conversation, thats how bad my concentration was. To this day I still go over and over what I'm writing, I've already edited this comment post and it still takes me longer than normal to write something. This is being OFF of topamax a yr. Please ask your Dr if you "are at a toxic level" with your medication, it is possible to be on too much meds and they CAUSE seizures. The Drs always downplay the side effects of meds, heck my Dr. acts like side effects dont exist...I want to strangle him sometimes! As hard as it is...you HAVE TO keep yourself busy, minds games, puzzles etc. I'm better than I was a yr ago, I'm watching what I eat and taking a multivitimin and B6. I know its frustrating, I know it feels like no one understands what your going through. You just want to scream to your thought processes, wake up! I told my husband that I thought if I played ping pong and had to respond to something coming at me physically it would jar my mind. It does get better but you have to work at it....that sounds horrible to have to say, because I know ALL the things your dealing with right now. AusSue you are a strong person, you know it, so just know you're not going crazy, and you will get through this. Lets see instead of a quote I'll make a wish list for us. A nice sun deck, early morning, gentle breeze and tea and scones. You can do it girlfriend :-))
Maxine
Love the quote at the end too.
spoke to local Dr the other day & she was puzzled with the change of doses, esp with no of seizures I am having. She also said that some of my other times when I am "blank" are probably seizures too. Said to keep track of them & let neurologist know too. Had another one tonight too where just stared ahead & didn't respond for matter of couple minute to hubby. He is finding it even more frightening than the ms is as I can't communicate & he can't help either too. Don't know what to do to try to reduce them, trying to get more sleep but not sleeping well some nights too. God sleep apneo too & can't use machine at moment due to blocked sinuses so that doesn't help either. Feeling a lot challenged & not safe out by self either now too.
Get a lot out of reading all the posts too. Thanks all for sharing.
Getting scared now.
Girlfriend, you need to stop falling (like you dont know that) I'm just worried about you. It is normal to be scared, but try to be positive and proactive...call your Dr.
Maxine :-)
Very hard to know what is controlling me or not. Had to fight to get tegretol in 1st place so don't want to rock that one now & lose it as at least it helps.
Keep blacking out/dosing off & dont know which now so we dont know what to do now. Spoke to gp last week & she couldnt offer any other help either. Said to contact neurologist & left messages but havent heard from him at all.
Please anyone with any advice I would appreciate it.