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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 20 of 20. This is the beginning of the thread.
Posted by ivoovi on January 15, 2002, at 1:10:53
Anyone! My doctor has prescribed Tegretol as a replacement for Depakote (worked great, but had weight gain)....Based on the posts I've read on this board, I'm SCARED to death of this medication, I'm not starting it tonight because I don't want to die, and I don't want my brain to turn to mush (due to neurotoxcity), espicially since I'll be taking the Tegretol and Depakote together for a short period! Advise, info, anyone!! Should I start Tegretol!?
-Chris
Posted by Joy on January 15, 2002, at 5:11:05
In reply to I'm scared to death of Tegretol! Help!, posted by ivoovi on January 15, 2002, at 1:10:53
According to Dr. Heller a well know psych , Tegretol can be a good med when used with other meds. He prefers it to Depakote and even Neurontin.
"When Depakote was discovered to be efficacious for bipolar and BPD, I of course tried it. While it helped some - with or without an SSRI - it just wasn’t as effective as Tegretol. Many patients still required temporary extra doses of Tegretol with the Depakote, and got extraordinary relief. They did not get this relief with the addition of more Depakote. Chronically dysphoric patients on Prozac and Depakote often need the temporary addition of Tegretol. There is literature documentation on the safe use of both medications together."
Joy
> Anyone! My doctor has prescribed Tegretol as a replacement for Depakote (worked great, but had weight gain)....Based on the posts I've read on this board, I'm SCARED to death of this medication, I'm not starting it tonight because I don't want to die, and I don't want my brain to turn to mush (due to neurotoxcity), espicially since I'll be taking the Tegretol and Depakote together for a short period! Advise, info, anyone!! Should I start Tegretol!?
>
>
> -Chris
Posted by Mitch on January 15, 2002, at 13:07:44
In reply to I'm scared to death of Tegretol! Help!, posted by ivoovi on January 15, 2002, at 1:10:53
> Anyone! My doctor has prescribed Tegretol as a replacement for Depakote (worked great, but had weight gain)....Based on the posts I've read on this board, I'm SCARED to death of this medication, I'm not starting it tonight because I don't want to die, and I don't want my brain to turn to mush (due to neurotoxcity), espicially since I'll be taking the Tegretol and Depakote together for a short period! Advise, info, anyone!! Should I start Tegretol!?
>
>
> -ChrisI would not get that concerned if you are switching the meds. Depakote doesn't have a very long half-life anyways. Call your doc and see if you can do a rapid cross-taper-i.e. drop your Depakote in half the first day with a small dose of Tegretol, then drop the Depakote in half the next day and then double the Teg. dose, etc., getting yourself completely switched over in four days or so.
Mitch
Posted by JohnX2 on January 16, 2002, at 1:06:08
In reply to I'm scared to death of Tegretol! Help!, posted by ivoovi on January 15, 2002, at 1:10:53
Hi Chris,My doctor was pushing Trileptal, a newer
form of Tegetrol that is supposed be more
benign on the body. You may want to ask about
it.good luck,
john
> Anyone! My doctor has prescribed Tegretol as a replacement for Depakote (worked great, but had weight gain)....Based on the posts I've read on this board, I'm SCARED to death of this medication, I'm not starting it tonight because I don't want to die, and I don't want my brain to turn to mush (due to neurotoxcity), espicially since I'll be taking the Tegretol and Depakote together for a short period! Advise, info, anyone!! Should I start Tegretol!?
>
>
> -Chris
Posted by anniebananie on January 16, 2002, at 1:59:48
In reply to I'm scared to death of Tegretol! Help!, posted by ivoovi on January 15, 2002, at 1:10:53
> Anyone! My doctor has prescribed Tegretol as a replacement for Depakote (worked great, but had weight gain)....
Not to discourage you -- as we all know, everbody's different -- but I gained a good bit of weight on tegretol. It also made me unable to do simple arithmetic and once to drive off the road. Trileptol, which is similar to tegretol, is not supposed to be so bad. And if you want weight loss with your mood stabilization ask about topamax. Lost all the weight the ones before it put on me.Take care,
Annie
Posted by ivoovi on January 16, 2002, at 15:58:09
In reply to Re: I'm scared to death of Tegretol! Help!, posted by anniebananie on January 16, 2002, at 1:59:48
Humm, I'll take that into consideration. I asked about Lamictal -- but my doctor won't try it -- it considers it a last resort. I have been on topamax before and it caused an unbelievable amount of anxiety and aggitation. I am thinking about going off my meds - but everytime I do I end up doing illicit drugs instead...
I do have a question though - is depakote prone to causing mental fogginess?
I used to be such a good writer, and had an extensive vocabulary but that is completely gone now!! I'm wondering if it's the Depakote or the NEurontin and if it'll go away?
Posted by anniebananie on January 16, 2002, at 22:58:18
In reply to Re: I'm scared to death of Tegretol! Help!, posted by ivoovi on January 16, 2002, at 15:58:09
> I do have a question though - is depakote prone to causing mental fogginess?
Depakote did make me a bit foggy, but in retrospect, of all the anticonvulsants I've tried, it probably gave me the least cognitive problems. I was able to take two 4-credit college courses at the same time I was working fulltime on a TV series. But I gained alot of weight so I switched to neurontin and I stopped gaining weight and got a little stupider.> I used to be such a good writer, and had an extensive vocabulary but that is completely gone now!! I'm wondering if it's the Depakote or the NEurontin and if it'll go away?
I know just what you mean -- I bothered to learn all these polysyllabic words and now I can't get at them. Unfortunately they all cause word finding difficulties to one degree or another and it does not get better. Topamax was the absolute worst -- at a Thanksgiving dinner I could not conjure up the word sauerkraut and there was a big bowl of it in front of me. I want to tell people that I'm really not an idiot as I stand there muttering "starts with a d...um...it's kind of like deceit, but more complicated..um..." So far lamictal has done it less than the others and makes me generally less like underwater me, so I am putting up with a bit of weight gain. Too bad your doctor won't let you try it. Has he or she had bad experience with it, or just doesn't think it's right for you?Take care,
Annie
Posted by 2sense on April 19, 2002, at 19:15:09
In reply to Re: I'm scared to death of Tegretol! Help! » ivoovi, posted by anniebananie on January 16, 2002, at 22:58:18
Does Tegretol cause sexual dysfunction? And if so at what dose?
Sue
Posted by 2sense on May 18, 2002, at 7:46:25
In reply to Re: I'm scared to death of Tegretol! Help!, posted by 2sense on April 19, 2002, at 19:15:09
I have been on the generic form of Tegretol (Carbapezine) as an anticonvulsant (from the neurologist point of view) and as a mood stabilzer from the pdoc's point of view. I was put on Klonopin/Clonazepam I think it started 08/2000, maybe a little earlier -- maybe 05 or 03 -- anyway it started for insomnia and at 0.5 mg. I got a hold of my Rx records and see that it slowly went up and now am at 4 mg per night. I am now on 600 mg. of the Tegretol stuff (worked up over 3 weeks to that). I have the mental fogginess and search for words, and pee constantly but I have gained weight. I have gained 20 lbs. since last August of 2001 (I was at 105 lbs. and needed to gain weight BUT) it wasn't until I tried to get off of the Klonopin (cold turkey) that I had a grand mal seizure and then had an abnormal EEG and MRI (early 04/02) and was sent to a neurologist who I am not going back to (but I don't have another appointment w/ a neurologist until mid-June). I seemed to have gained 10 lbs since going on the Tegretol and one of the side effects is ANOREXIA where one of the Klonopin side effects is GAINING WEIGHT -- both are in the frequent side effects. Of course I am kicking myself that I cold turkeyed the Klonopin -- but I wasn't thinking, just had a TAH, the family had the flu, and inbetween had all sorts of cardiology tests and have tachycardia and have a catheter/ablation scheduled for 05/29/2002.
My question -- is anyone else on this combo? I wouldn't be on either if I had used my head -- the neurologist put me on the Tegretol to protect my driver's license (even though the EMT's, the ER doc, my own internist and this neurologist -- even after the EEG and MRI) said the seizure was drug induced (plus I got VERY careless w/ the time interval between Wellbutrins (supposed to be minimum of 6-8 and since so much was going on I just took it when I remembered which usually was like 4 hours -- coupled with the lack of sleep -- and then I talked to the pdoc (the first one moved in CO who I had been with for like 6 years, then the other saw me twice and had a massive stroke, and then this guy I can't see until 09/06 so my communications are with him via phone -- which we had 3 calls and he knew my Klonopin script had run out -- but he was determined to put me on Depakote (and the only reason I stay with this outfit is that I see a therapist who is excellent and helping me with my anorexic issues).
ANYONE HAVE ANY ADVICE AT ALL? Anyone have experience with the klonopin (and weight gain -- I have been on the 4 mg. at night since 08 or 09/2001 and then the Tegretol only a month but that's when the appetite picked up). I am a "man" (not really :-) ) without a doctor (even my internist is on vacation.
Dove wrote a wonderful answer/informative posting about Tegretol but didn't mention the weight gain and didn't mention why she was put on it and what she eventually went on. Dove if you are out there and reading, please write -- thanks to EVERYBODY ... just my 2Sense (Sue)
Posted by Zo on May 24, 2002, at 17:09:00
In reply to Re: I'm scared to death of Tegretol! Help!, posted by 2sense on May 18, 2002, at 7:46:25
My sense is that Tegretol is Heavy Artillery, and that for many, many years doctors routinely put people on Tegretol, more or less for life, after a single seizure.For a long time, I don't think there was much else available--not that this isn't atrociously primitive thinking about seizure. But it is a wretched drug, compared to all the newer AEs/mood stabilizers. I remember developing mouth sores with in a week.
Have you looked into any alternatives? And no, I haven't heard of weight gain with Klonopin.
I had some help from Neurontin (in addition to an AD and pstim) but the side effects were difficult--altho it is just about non-toxic, even beneficial--compared to Lamictal, which I'm very happy with. Of course, YMMV.
Zo
Posted by Bob on May 25, 2002, at 14:37:19
In reply to Re: I'm scared to death of Tegretol! Help! » 2sense, posted by Zo on May 24, 2002, at 17:09:00
> I had some help from Neurontin (in addition to an AD and pstim) but the side effects were difficult--altho it is just about non-toxic, even beneficial--compared to Lamictal, which I'm very happy with. Of course, YMMV.
>
> Zo
Zo:How long were you on Neurontin, and at what dose? What were the side effects you had trouble dealing with?
I'm interested because I'm starting it now.
Bob
Posted by danibell25 on May 31, 2002, at 21:38:51
In reply to Re: I'm scared to death of Tegretol! Help! » Zo, posted by Bob on May 25, 2002, at 14:37:19
Okay, I just read all the above posts and now I'm wondering if I did the right thing by starting Tegretol. I was diagnosed bipolar II and borderline personality disorder. I've had a hard time finding the right medications. Most are made for bpI who have more manic episodes and need more "sedation". I stay depressed the majority of the time and don't need to feel any more sedated than I already am. Does anyone have any advice? Am I on the wrong med again?
Posted by 2sense on June 1, 2002, at 7:57:40
In reply to Re: I'm scared to death of Tegretol! Help!, posted by anniebananie on January 16, 2002, at 1:59:48
Did you go on Topomax? I have heard so much about it. I am gaining weight on Tegretol (it seems some of it is water weight -- it is an anticonvulsant/antidiuretic/mood stabilizer), memory problems, searching for words, a "pimple" at the back, back of my tongue (this is a real new one for me), urinating all the time which seems contrary to the water weight thing, undoes completely the Wellbutrin SR effect (the tegretol was prescribed for a seizure when I just went off Clonazepam -- that was prescribed by the psych doc -- the tegretol by a neurologist who is extremely hard to get a hold of), I have other side effects and I cannot remember them -- that seems to be part of it. Oh it screws up my blood work on my thyroid (I have Hashimoto's which causes hypothroidism and the Hasmimoto antibodies are reactivated under physical and emotional stress -- yes ...) I need a good thyroid doctor .. but I feel like I have so many now.
From what I understand the newer version of Tegretol (though I take the generic version Carbamazepine -- don't know if it makes any difference) I don't think so from what I have read. The psych doc upped the Wellbutrin SR (and too high a dose now on 500 mg but it isn't being metabolized the same way given the Tegretol).
I guess I wonder how much Topomax you started on, (I've read the lower and slower the less the side effects -- this is what doctors have written) and what you are on now -- and if you are surviving it.
Thanks ... 2sense -- Sue
Posted by katekite on June 1, 2002, at 11:42:45
In reply to Re: I'm scared to death of Tegretol! Help! » anniebananie, posted by 2sense on June 1, 2002, at 7:57:40
Hi,
I've heard the newer version of tegretol, trileptal, has far fewer side effects and doesn't require the careful monitoring that tegretol does.
This is from back when I was misdiagnosed BP II -- my psychiatrist at the time had completely changed everyone he had on tegretol over to trileptal.
kate
Posted by JohnX2 on June 1, 2002, at 12:05:43
In reply to Re: I'm scared to death of Tegretol! Help! » anniebananie, posted by 2sense on June 1, 2002, at 7:57:40
> Did you go on Topomax? I have heard so much about it. I am gaining weight on Tegretol (it seems some of it is water weight -- it is an anticonvulsant/antidiuretic/mood stabilizer), memory problems, searching for words, a "pimple" at the back, back of my tongue (this is a real new one for me), urinating all the time which seems contrary to the water weight thing, undoes completely the Wellbutrin SR effect (the tegretol was prescribed for a seizure when I just went off Clonazepam -- that was prescribed by the psych doc -- the tegretol by a neurologist who is extremely hard to get a hold of), I have other side effects and I cannot remember them -- that seems to be part of it. Oh it screws up my blood work on my thyroid (I have Hashimoto's which causes hypothroidism and the Hasmimoto antibodies are reactivated under physical and emotional stress -- yes ...) I need a good thyroid doctor .. but I feel like I have so many now.
>
> From what I understand the newer version of Tegretol (though I take the generic version Carbamazepine -- don't know if it makes any difference) I don't think so from what I have read. The psych doc upped the Wellbutrin SR (and too high a dose now on 500 mg but it isn't being metabolized the same way given the Tegretol).
>
> I guess I wonder how much Topomax you started on, (I've read the lower and slower the less the side effects -- this is what doctors have written) and what you are on now -- and if you are surviving it.
>
> Thanks ... 2sense -- Sue
Hi Sue,The biggest whammie reported on Topamax is cognitive decline (memory, word searching).
The other 2 potentially are agitation and tingling/pins-needles in extremeties.
Again, these are just listed side effects, doesn't mean you'll get
them.Loss of appetite is a major side effect too (although some people don't mind).
Wow, that 500 mg Wellbutrin! I've never seen over
400 mg prescribed?May you asked your doctor what the full array
of medicine choices are to treat the seizures?
Maybe we can help you with side effect experiences
to help find a medicine that best suit you from the list?One thing to remember is I think the doses for
seizures are sometimes (substantially) larger than
for psychiatric treatment, so the side effect profiles may be
exaggerated.Take Care,
John
Posted by 2sense on June 2, 2002, at 5:27:07
In reply to Re: I'm scared to death of Tegretol! Help!, posted by katekite on June 1, 2002, at 11:42:45
I have heard of it too. I am not sure I will need either -- but THANK YOU for posting and caring, really.
Sue
Posted by 2sense on June 2, 2002, at 5:34:13
In reply to Re: I'm scared to death of Tegretol! Help! » 2sense, posted by JohnX2 on June 1, 2002, at 12:05:43
The doc who put me on the outrageous amount of Wellbutrin does recognize that Tegretol undose what the Wellbutrin is doing in your system, so you really aren't on that amount -- but there is NO chart. I finally put a call in to the neurologist who wrote the tegretol and he is out until Monday -- even though I don't plan on returning to him -- until I get a 'regular' neurologist (as the psych doc won't do anything to change something he didn't write and neither will my regular doctor <-- and he could -- that ticked me off) I thought I'd give it a go.
When you went on the Topamax (I thought I read a post you went off of it and on to Serazone (but you were taking it for other reasons) you had a number of side effects. Did your psych doc start you at a very low dose? I was reading a doc FAQ forum thing I found and the dose one starts at seems (statistically -- ha ha ha) to correlate with the side effects -- I don't know. I did get confirmation from the DMV that they recognize it was a provoked seizure due to clonazepam cold turkey and sleep deprivation so my records clear and I can drive again -- what gets me is they reference this official notice I got -- wich I never did. Anyway the clonazepam AND the carbamazepine (both supposedly mood stabilizers) aren't stabilizing my mood ... could it be it doesn't need stabilizing -- and it is situational?
That is something I wish to open to all. Biochemical whatevers that need pharmeceutical treatments ARE REAL -- ARE REAL -- and they ebb and flow with the circumstances in our lives (BUT here is my question -- what came first the chicken or the egg -- does that make sense?)
Anyway -- thanks John a lot
Sue
Posted by JohnX2 on June 2, 2002, at 13:49:47
In reply to Re: I'm scared to death of Tegretol! Help!, posted by 2sense on June 2, 2002, at 5:34:13
> The doc who put me on the outrageous amount of Wellbutrin does recognize that Tegretol undose what the Wellbutrin is doing in your system, so you really aren't on that amount -- but there is NO chart. I finally put a call in to the neurologist who wrote the tegretol and he is out until Monday -- even though I don't plan on returning to him -- until I get a 'regular' neurologist (as the psych doc won't do anything to change something he didn't write and neither will my regular doctor <-- and he could -- that ticked me off) I thought I'd give it a go.
>
> When you went on the Topamax (I thought I read a post you went off of it and on to Serazone (but you were taking it for other reasons) you had a number of side effects. Did your psych doc start you at a very low dose? I was reading a doc FAQ forum thing I found and the dose one starts at seems (statistically -- ha ha ha) to correlate with the side effects -- I don't know. I did get confirmation from the DMV that they recognize it was a provoked seizure due to clonazepam cold turkey and sleep deprivation so my records clear and I can drive again -- what gets me is they reference this official notice I got -- wich I never did. Anyway the clonazepam AND the carbamazepine (both supposedly mood stabilizers) aren't stabilizing my mood ... could it be it doesn't need stabilizing -- and it is situational?
>
> That is something I wish to open to all. Biochemical whatevers that need pharmeceutical treatments ARE REAL -- ARE REAL -- and they ebb and flow with the circumstances in our lives (BUT here is my question -- what came first the chicken or the egg -- does that make sense?)
>
> Anyway -- thanks John a lot
>
> SueHi Sue,
My doc did put me on a really low dose of Top to start with, I don't remember the
dose, maybe it was 25mg? The side effects were none, so we quickly bumped it to
100 mg (but I don't remember exactly how quickly). At 100 mg, the side effects were
none, and I felt it was relieving my facial pain. So at my next office visit, we bumped
it to 400 mg. To be honest, I don't remember how quickly it occured, but it was within the
span of 2-4 weeks. I tolerated the medicine much better than most patients and could
quickly titrate up the dose. After a while, for whatever reason, I found that the medicine
was making me hypomanic and a bit agitated/angry (at 1st we thought it was from tapering Klonopin).
I was mostly taking topamax to help with the pain. But the hypomania/agitation was bad enough
to prompt me to switch to serzone, which was better for sleep and doesn't trigger hypomania
for me, although I became a bit more depressed :-(.As far as the mood stabilizers go, hmmm.
Lets see for depression, there is exogenous and endogenous
depression. Endogenous is caused by an inner biological
imbalance. Exogenous is more of a situational depression
(something in your life is going awry). Sometimes an
exogenous depression can set off an endogenous depression
for some with depression genetics. Or a depression may just
crop up out of the blue for no reason. For someone without
depression genetics, a situational depression (exogenous)
will usually resolve when the situation "resolves".So I think this can be analogous for mood swings and mood
stabilizers. People with bipolar may have "endogenous" mood
swings, i.e. mood swings not related to life events. But,
If you have things going on in your life that are good and bad
while you are also medicating with mood stabilizers, it seems reasonable
that you may have mood swings. But hopefully the mood swings
should be within the bounds of what is "normal" for you when
you are healthy. I'm not sure if your bipolar dx is accurate, you would know better.
If you are just having seizures, then mood swings may not
be related to the neurological disorder. Also, it may be hard
to quantify what the "range" of normal moods are sometimes.
For someone is who is bipolar I (more severe bipolar), who
is put on stabilizers, they will probably notice a substantial
narrowing in mood patterns. For Bipolar II (a softer form),
the mood stabilizers tend to more subtlely dampen the mood
swings. I guess it is possible that a mood stabilizer may
make someone who has no issue at all to feel "flat", but
everyone's body is different. I take Lamictal, and this medicine
does not make my moods go into a range that is outside of normal.
Some people who are put on medicines like Lithium
say their moods feel very "flat", "constrained". It's very individual.Best Regards,
John
Posted by 2sense on June 3, 2002, at 4:57:46
In reply to Re: I'm scared to death of Tegretol! Help! » 2sense, posted by JohnX2 on June 2, 2002, at 13:49:47
John --
Thanks for both the information and the empathy. It comes at a time when it is very helpful, both.
Sue
Posted by MARKED on January 17, 2004, at 8:32:13
In reply to Re: I'm scared to death of Tegretol! Help!, posted by 2sense on June 3, 2002, at 4:57:46
Very interesting to read all these posts....I have considered coming off of Moclobemide (Aurorix) and start Carbamazepine, but feel that the postives are not that stable compared to how i found the effects of moclobemide.
I am struggling with finding a mood stabiliser and it seems they (the drug companies) fail to create more specic drugs in this area. They state that since bi-polar consists of only 2-5% of the menatl health sector it isn't cost effective for them to establish drug trials.
RIMA's seem to be the most helful for myself, and others that i have interraction with. But again, I don't think any maricle drug is the cure at this tage.
This is the end of the thread.
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