Hello everyone, I'm new to this site although not new to Epilepsy. Had the Right Temporal Lobe Lobectomy 4 years ago since I was having violent gran mal seizures. Was seizure free for approx. 4 years and just recently started having nocturnal seizures (only in my sleep) and they're not nearly as long (approx. 10 seconds) and only my arm bangs. Although it could be longer now (not sure) since my husband immediately stops them by placing his pointer finger on the dent above the lip / below the nose and this pressure point seems to immediately stop the seizure. I was put on Keppra (500 mg. 2x daily = very low dose) and the side effects kicked my butt! Lost 20lbs in a month, crazy mood swings (from spiritual peaks, to rage, to depression), alopecia areata which I'm now having to get steriod shots in my head for. Neuro gave me Tegretol XR and at the moment I haven't started them. Does anyone know the difference between Tegretol and Tegretol XR? I can't seem to get enough info. on the XR. I've been off Keppra for about a month 1/2 and opted to take nothing due to the crazy side effects (I know : (. Ironically prior to surgery (Dilantin, Lamictal, Tegretol, etc.) I didn't get ANY side effects and now after surgery I seem to get every one listed, which actually hindered my recovery and they took me off all meds after one year rather than the minimum 2 years because I was below 90 lbs. Anyone on Tegretol XR and if so, should I expect hair loss, weight loss, and crazy mood swings? To be honest the hair freaks me out the most since I lost a lot during my recovery (was on Lamictal for the year after surgery) and YES my hair did grow back and it was thicker and healthier than ever, but this time I'm on meds for good and I would like a med with the least side effects (yes, I know that's asking way too much : ) or at least one that's not going to make me go bald. Lamictal I lost a lot of hair all over my head and it was gradual, whereas Keppra (shewwwww) bald patches quickly! I'm considering alternative medicine since at the moment my seizures are small ones in my sleep and I don't have them every night. To be honest, I can't believe I'm dealing with seizures again after already having the surgery : ( I guess I should be grateful they're not as bad as they use to be and I was seizure free for 3 years. Any info would be greatly appreciated : ) Thanks! And I hope I can be of help to others.
Hey All,
- Thread starter KelVarQ
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RobinN
Super Mom
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Hi KelVarQ - Welcome to CWE
My daughters first med was Tegretol XR. It is a slow release. This med caused vision loss for Rebecca. Scary time for all of us, after her first seizures. The neuro didn't agree with my diagnosis, but after eliminating that med from her system she has never had that problem again. These meds act differently with each person. You might have the side effects or you might not.
These side effects were not acceptable to me, so I researched alternatives and found that making changes in my daughters nutrition and neurofeedback therapy has raised her seizure threshold.
I did read about the pressure point under the nose. Seem to be reminded that it is the end to many nerve endings. Glad that works for you.
My daughters first med was Tegretol XR. It is a slow release. This med caused vision loss for Rebecca. Scary time for all of us, after her first seizures. The neuro didn't agree with my diagnosis, but after eliminating that med from her system she has never had that problem again. These meds act differently with each person. You might have the side effects or you might not.
These side effects were not acceptable to me, so I researched alternatives and found that making changes in my daughters nutrition and neurofeedback therapy has raised her seizure threshold.
I did read about the pressure point under the nose. Seem to be reminded that it is the end to many nerve endings. Glad that works for you.
epileric
Veteran
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Welcome KQ
I also use the spot on my upper lip as one of the points to try & stop or lessen my seizures. I'm an acupressure student (graduating soon) & my teacher suggested I research that point and see if it helps my seizures.
I've also been on Keppra & it sounds like it was as much of a nightmare for you as it was for me. I've been (& still am) on tegretol XR (it's CR in Canada) for many years & most of my side-effects from it have been more cognitive & feeling sluggish. No problems with hair at all. Of course we all react differently to meds so the only way to know for sure is to try it (though I don't believe it's on its listed side-effects).
Here's a list of alternative treatments for epilepsy you might want to check out. You also might want to look at the "history book" in the "library" where members can document their experiences with various treatments.
I also use the spot on my upper lip as one of the points to try & stop or lessen my seizures. I'm an acupressure student (graduating soon) & my teacher suggested I research that point and see if it helps my seizures.
I've also been on Keppra & it sounds like it was as much of a nightmare for you as it was for me. I've been (& still am) on tegretol XR (it's CR in Canada) for many years & most of my side-effects from it have been more cognitive & feeling sluggish. No problems with hair at all. Of course we all react differently to meds so the only way to know for sure is to try it (though I don't believe it's on its listed side-effects).
Here's a list of alternative treatments for epilepsy you might want to check out. You also might want to look at the "history book" in the "library" where members can document their experiences with various treatments.
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Hi KelVarQ, and welcome!
I've heard about the upper lip spot as an acupressure site. Some ERs actually have a "pen" that they use to put pressure there. If I'm feeling nervous that I might have a seizure, I do the same thing. Nice to hear that it works for you.
I'm sorry about your endless quest for the "side-effect free" med. Very hard to predict how any individual will react to a given med. The Tegretol XR (XR = Extended Release) is supposed to even out the level of medication in your body over the course of a day. Depending on how quickly your body metabolizes the meds though, you can still end up with an "extra" amount in your system if the initial dose is still slowly releasing at the time you take your next dose.
Don't know whether you can go back on Lamictal. I'm taking it now: I had the hair loss you describe, but after about 6 months the hair loss stopped and my hair is fine now. Other side effects (weight gain, restless sleep) seemed to have abated as well, although are still plenty (blurry vision, dry mouth/eyes, etc.) for me to kvetch about.
I hope you are able to give alternative medicine a shot -- the AEDs are always "toxic" by the nature of how they need to work on the brain, so if you can avoid them that would be super.
Best,
Nakamova
I've heard about the upper lip spot as an acupressure site. Some ERs actually have a "pen" that they use to put pressure there. If I'm feeling nervous that I might have a seizure, I do the same thing. Nice to hear that it works for you.
I'm sorry about your endless quest for the "side-effect free" med. Very hard to predict how any individual will react to a given med. The Tegretol XR (XR = Extended Release) is supposed to even out the level of medication in your body over the course of a day. Depending on how quickly your body metabolizes the meds though, you can still end up with an "extra" amount in your system if the initial dose is still slowly releasing at the time you take your next dose.
Don't know whether you can go back on Lamictal. I'm taking it now: I had the hair loss you describe, but after about 6 months the hair loss stopped and my hair is fine now. Other side effects (weight gain, restless sleep) seemed to have abated as well, although are still plenty (blurry vision, dry mouth/eyes, etc.) for me to kvetch about.
I hope you are able to give alternative medicine a shot -- the AEDs are always "toxic" by the nature of how they need to work on the brain, so if you can avoid them that would be super.
Best,
Nakamova