Health QuestionsCategory: TreatmentsAdvice w/coping w/Trileptal side-affects?
tracy asked 3 years ago

Ok, i started taking 150 mg of trileptal for simple partial (and occassional generalized) seizures on august 18….two weeks later, on labor day weekend I upped my dose to 300mg as prescribed by my neuro. after 4 doses (150mg am and pm) I ended up losing a great deal of my muscle coordination, leaving me hardly able to walk, talk, or see straight and, of course, I had that brain fog to go along with it. I spent the day on the couch. I backed off the higher dose to the 150 mg and the problems went away but am afraid to return to the higher dose because of the side affects.
 
I was wondering if anyone else has experienced this and how long the side affect lasts — I cannot function like that and cannot afford the time off from work to see if they will go away.  
 
Also, I was originally on Tegretol and really didn’t have too many side affects with that, but doc wanted to change me to something that might help the severe migraines as well as the seizures. (As it stands, I’ve been on 5 different meds and quit 4 because of the side affects and am thinking that i’d go back to the tegretol since the migraines aren’t what have the potential of killing me Cheesy)
 
I’m left wondering since the two drugs are so closely related, could I now have developed a sensitivity to Tegretol as well, or would it be a safe bet to return to it? Anyone’s thoughts or experiences on this?
 
Thanks
 
Tracy

8 Answers
Kassiane answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
I had a similar reaction to Trileptal–such incoordination I was literally dangerous to myself–and I’m pretty sure it isn’t a hypersensitivity so much as a “the place this hits my brain is NOT HAPPY!”
 
Tegretol I did better on, except it likes my blood cells for snacks. But it WORKED better for me and had fewer side effects. Figures, huh?
 
Kassiane, who’s been on all the AEDs except Depakote, Gabitril, Dilantin, Felbatol, and phenobarbital

tracy answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Well, this evening I upped my dose again to the 300mg and I started feeling a little ‘stoned’ tonight, got a little anxious as a result: don’t like feeling out of control. But on the whole, i didn’t lose my motor functions and could still talk — watching tv caused a few problems when i looked away — had trouble focusing. My lips are also a little tingly. This is 6 hrs after the dose.
 
However, I’d like to see how it goes tomorrow after subsequent doses before complaining again. I didn’t have problems the first time until my 4th dose.  
 
I guess I could back off to the 150mg for the am dose and keep the 300mg for the evening dose and see if i can acclamate to that before raising the morning dose. Can’t hurt to try. The generalized seizure last month was a real wake up call for me — I hadn’t had one in 9 years and it took me nearly a week to recover my mind after this one. It was probably another 3-4 days after that that my body completely recovered  — this was pretty scary.
 
Yeah, I read about your experience with tegretol. I didn’t seem to have many problems other than with my serum iron and taking a supplement worked pretty well. If I can’t get the titration to work with this med this go ’round, i’ll probably request a return to tegretol. Thanks!
 
 
 
 

mania answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Honestly?  If Tegretol was working for you, just go back to it.  
 
I hadn’t had a (not associated with a seizure) migraine in years (am on Topamax), but I had one on Trileptal.  I don’t buy the argument that it will magically fix them.  
 
Then again, I’m a proponent of the “all this funky-brain-shit happens on one big ass spectrum” theory; meaning if you get your seizures fully controlled, your migraines will probably just fall in line.  
 
Did that make sense?  I mean – they are two distinct entities, migraine and seizures, but if you can fix your neurological misfirings in one department, it usually helps out the other department.  It’s the whole, “the leg bone is connected to the hip bone” thing….
 
 
mania

tracy answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Yeah, I DO understand. Unfortunately, the migraines still happen, even on the tegretol. Is trileptal good for migraines? Not sure. But, as I said somewhere else on this board, it’s not the migraines that have the potential of killing me.
 
I went to the SUDEP page and, well, it seems that I have a lot of the high-risk factors in my court (not good) and I think that the migraines are actually preferrable to death. Not by much tho. Cheesy
 
I kinda think the doc would rather have me on trileptal because of the extra oxygen that helps the bloodwork, but if I can’t tolerate it, yeah, I’ll go back to the tegretol.
 
I did do the 150 am and 300 pm dose and what I’m finding interesting is that I feel more tired after my lower morning does than after my higher evening dose. Anyone have any thoughts on that?
 
Tracy

mania answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Why not just go back to Tegretol and add in some Topamax?
 
I mean, Topamax is actually approved for migraines.
 
mania

tracy asked 3 years ago

Ok, i started taking 150 mg of trileptal for simple partial (and occassional generalized) seizures on august 18….two weeks later, on labor day weekend I upped my dose to 300mg as prescribed by my neuro. after 4 doses (150mg am and pm) I ended up losing a great deal of my muscle coordination, leaving me hardly able to walk, talk, or see straight and, of course, I had that brain fog to go along with it. I spent the day on the couch. I backed off the higher dose to the 150 mg and the problems went away but am afraid to return to the higher dose because of the side affects.
 
I was wondering if anyone else has experienced this and how long the side affect lasts — I cannot function like that and cannot afford the time off from work to see if they will go away.  
 
Also, I was originally on Tegretol and really didn’t have too many side affects with that, but doc wanted to change me to something that might help the severe migraines as well as the seizures. (As it stands, I’ve been on 5 different meds and quit 4 because of the side affects and am thinking that i’d go back to the tegretol since the migraines aren’t what have the potential of killing me Cheesy)
 
I’m left wondering since the two drugs are so closely related, could I now have developed a sensitivity to Tegretol as well, or would it be a safe bet to return to it? Anyone’s thoughts or experiences on this?
 
Thanks
 
Tracy

8 Answers
Kassiane answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
I had a similar reaction to Trileptal–such incoordination I was literally dangerous to myself–and I’m pretty sure it isn’t a hypersensitivity so much as a “the place this hits my brain is NOT HAPPY!”
 
Tegretol I did better on, except it likes my blood cells for snacks. But it WORKED better for me and had fewer side effects. Figures, huh?
 
Kassiane, who’s been on all the AEDs except Depakote, Gabitril, Dilantin, Felbatol, and phenobarbital

tracy answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Well, this evening I upped my dose again to the 300mg and I started feeling a little ‘stoned’ tonight, got a little anxious as a result: don’t like feeling out of control. But on the whole, i didn’t lose my motor functions and could still talk — watching tv caused a few problems when i looked away — had trouble focusing. My lips are also a little tingly. This is 6 hrs after the dose.
 
However, I’d like to see how it goes tomorrow after subsequent doses before complaining again. I didn’t have problems the first time until my 4th dose.  
 
I guess I could back off to the 150mg for the am dose and keep the 300mg for the evening dose and see if i can acclamate to that before raising the morning dose. Can’t hurt to try. The generalized seizure last month was a real wake up call for me — I hadn’t had one in 9 years and it took me nearly a week to recover my mind after this one. It was probably another 3-4 days after that that my body completely recovered  — this was pretty scary.
 
Yeah, I read about your experience with tegretol. I didn’t seem to have many problems other than with my serum iron and taking a supplement worked pretty well. If I can’t get the titration to work with this med this go ’round, i’ll probably request a return to tegretol. Thanks!
 
 
 
 

mania answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Honestly?  If Tegretol was working for you, just go back to it.  
 
I hadn’t had a (not associated with a seizure) migraine in years (am on Topamax), but I had one on Trileptal.  I don’t buy the argument that it will magically fix them.  
 
Then again, I’m a proponent of the “all this funky-brain-shit happens on one big ass spectrum” theory; meaning if you get your seizures fully controlled, your migraines will probably just fall in line.  
 
Did that make sense?  I mean – they are two distinct entities, migraine and seizures, but if you can fix your neurological misfirings in one department, it usually helps out the other department.  It’s the whole, “the leg bone is connected to the hip bone” thing….
 
 
mania

tracy answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Yeah, I DO understand. Unfortunately, the migraines still happen, even on the tegretol. Is trileptal good for migraines? Not sure. But, as I said somewhere else on this board, it’s not the migraines that have the potential of killing me.
 
I went to the SUDEP page and, well, it seems that I have a lot of the high-risk factors in my court (not good) and I think that the migraines are actually preferrable to death. Not by much tho. Cheesy
 
I kinda think the doc would rather have me on trileptal because of the extra oxygen that helps the bloodwork, but if I can’t tolerate it, yeah, I’ll go back to the tegretol.
 
I did do the 150 am and 300 pm dose and what I’m finding interesting is that I feel more tired after my lower morning does than after my higher evening dose. Anyone have any thoughts on that?
 
Tracy

mania answered 3 years ago

Re: Advice w/coping w/Trileptal side-affects?
Why not just go back to Tegretol and add in some Topamax?
 
I mean, Topamax is actually approved for migraines.
 
mania