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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by 2sense on April 14, 2002, at 8:55:54
I have been put on this and it sounds really scary -- generic name: Carbamazepine. Any info would be GREATLY appreciated.
Sue
PS It is not the XR version
Posted by Jackster on April 15, 2002, at 2:06:09
In reply to TEGRETOL: Does anyone take it ??????, posted by 2sense on April 14, 2002, at 8:55:54
> I have been put on this and it sounds really scary -- generic name: Carbamazepine. Any info would be GREATLY appreciated.
>
> Sue
>
> PS It is not the XR versionHi Sue
I'm on Tegretol for panic disorder - but it is commonly prescribed for bipolar disorder. I'm on 200mg per day - and the side effects seem to be pretty low - occasional nausea, a little bit of sedation, and that damn sexual dysfunction. Seems to work well at blocking my panic attacks, and I'm definitely more mellow. Other people on this board can prob tell you more about the BP side of it if that's why you're on it.
Jackie
Posted by 2sense on April 15, 2002, at 14:53:44
In reply to Re: TEGRETOL: Does anyone take it ??????, posted by Jackster on April 15, 2002, at 2:06:09
Thank you for answering my mail -- I was hoping for more posters -- but am VERY grateful. I will be on a much higher dose as it is for seizure control (and a back door bi polar -- which in and of itself is annoying me) -- I am woefully disappointed about the sexual dysfunction. CAN you tell me how long you have been on it?
Many thanks,
Sue
Posted by LynnPerley on April 15, 2002, at 22:51:49
In reply to Re: TEGRETOL: Does anyone take it ?????? » Jackster, posted by 2sense on April 15, 2002, at 14:53:44
I took it for several months many years ago for a seizure disorder. I recall no side effects, but I had to get a blood draw daily for several weeks and it was a royal pain. Wish I could be more help.
Posted by JohnX2 on April 16, 2002, at 0:24:02
In reply to Re: TEGRETOL: Does anyone take it ??????, posted by LynnPerley on April 15, 2002, at 22:51:49
> I took it for several months many years ago for a seizure disorder. I recall no side effects, but I had to get a blood draw daily for several weeks and it was a royal pain. Wish I could be more help.
I believe with the "new and improved" cousin of Tegetrol, Trileptal, you don't need the blood draws. Something to check into.
John
Posted by Jackster on April 16, 2002, at 1:28:59
In reply to Re: TEGRETOL: Does anyone take it ?????? » Jackster, posted by 2sense on April 15, 2002, at 14:53:44
> Thank you for answering my mail -- I was hoping for more posters -- but am VERY grateful. I will be on a much higher dose as it is for seizure control (and a back door bi polar -- which in and of itself is annoying me) -- I am woefully disappointed about the sexual dysfunction. CAN you tell me how long you have been on it?
>
> Many thanks,
>
> SueHi Sue
I've only been on for 3 months - but my PDoc seems to think that the side effects tend to wear off after a few months. I just realised that I'm on the extended release version. What dosage are you taking?
Jackie
Posted by 2sense on April 16, 2002, at 7:27:28
In reply to Re: TEGRETOL: Does anyone take it ??????, posted by LynnPerley on April 15, 2002, at 22:51:49
I haven't started it yet -- am going to the heart doctor for a different problem (electricl). No sexual dysfunction? May I ask something so personal? What dosage are you on and how long have you been on it and what other (if any :-)) other meds are you on?
Thanks for letting me ask.
Sue
Posted by fiona on April 20, 2002, at 10:39:25
In reply to Re: TEGRETOL: Does anyone take it ??????, posted by Jackster on April 16, 2002, at 1:28:59
Hi, I'm on tegretol 400mg per day and I don't find it that bad. Apart from an occassional attack of fuzziness and some slight weight gain I would say it was ok. I haven't had any bother with sexual dysfunction (thankyou God), this is actually the first time I have heard of anyone being affected by that.Although that may be because I don't know a heck of a lot of folk on tegretol.
Take care with the hard to wake up in the morning feeling, although my doc assures me all these side affects dissapear after the first few months.
Posted by 2sense on April 20, 2002, at 17:02:57
In reply to Re: TEGRETOL: Does anyone take it ??????, posted by fiona on April 20, 2002, at 10:39:25
>> Hi, I'm on tegretol 400mg per day and I don't find it that bad. Apart from an occassional attack of fuzziness and some slight weight gain I would say it was ok. I
>> haven't had any bother with sexual dysfunction (thankyou God), this is actually the
>> first time I have heard of anyone being affected by that.Although that may be
>> because I don't know a heck of a lot of folk on tegretol.
>> Take care with the hard to wake up in the morning feeling, although my doc assures
>> me all these side affects dissapear after the first few months.First, THANK YOU SO MUCH FOR ANSERING THIS POST. I am on it for seizures (though the one and only seizure I had was a grand mal on 3/29/02 and I had been on Klonopin (steadily rising due to its tolerance ‘thing) and didn’t like its side-effects – the psych-doc didn’t have an appointment until 09/06/02 and so we were talking over the phone in the weeks that preceded Easter weekend. He was just adamant that he’d put me on something else but until then he wouldn’t take me off the Klonopin (which I originally had started 08/00 at 0.5 for sleep – that was his psych-nurse who was very attentive but moved this past October (I’ve was ‘passed’ to another psych-doc who upped it to 4mg (the Klonopin) because he believes I had some sort of ?-polar disorder because I talk fast (though the neurologist I saw 04/12/02 talked at the speed of light – like that commercial for Fed-Ex that used to be on) and I have Hashimoto’s disease/disorder (causes hypothyroidism and so I take Synthroid (my point of service doc who is an internist deals with that but the Synthroid levels out the TSH but physical and/or emotional stress will reactivate the antibodies so I have to have the blood tested a lot.) That psych doc had a massive stroke and I was passed to the original psych doc whose nurse took care of me for the last 6 years and he just will not budget though he has seen me except once 6 years ago – and he was so busy answering his phones and pages – I finally asked him if he knew his anniversary or the names of his kids. I also take Wellbutrin (the Hashimoto’s went untreated for 4 years and it really affects you but I don’t know what is with the docs around here – I guess it is like anything good ones and no so good – since it helps if the thyroid goes out of whack plus it cuts my cigarette habit to nearly nothing) – just to complete the picture I have atypical anorexia (a coping mechanism I started in 1990 in response to my first abusive husband finally left in 1992 – have been in counseling, etc. and during that time my son was 7 and we discovered AD/HD and while he was being tested I read the adult AD/HD book and was amazed at the overlap in emotional liability with AD/HD and anorexia (e.g. control issues) – well this AD/HD doc (that’s all this guy did for adults, children,, did research, blah, blah) tested me through and through put me on it and my weight stabilized in like 8 weeks. So the family had the flu and I wasn’t sleeping well – up and down all night – and was told by the psych nurse and doc that I could take the Klonopin AS NEEDED. So when the script ran out 3/18/02 and the family had the flu I was using some Benedryl (like the give you at the hospitals for sleep) some nights others I was just sleeping. But one night I didn’t sleep at all and called in for a refill which didn’t get filled in (I can’t drive because of an electrical heart condition that is going to be repaired via ablation in the next few weeks) so when it did get filled a day or so later my husband was still too weak to drive there (it was ready the Thursday before Good Friday after 8 and he had already ran errands since we had family from NJ coming in around 7 PM on Good Friday. I didn’t sleep again at all Thursday night, had become careless about taking the Wellbutrin 6-8 hours apart, and was drinking more caffeine. All of these things LOWER one’s seizure threshold and the Klonopin withdrawal threw it over. So off I was to my POS doc who scheduled an EEG and MRI (I had optic neuritis 3 years ago almost to the day and had a clear MRI and have had no other MS systems and it occurred after the family had hard core FLU – like one every other day and to the ER for chest x-rays – talk about not sleeping for like 6 days straight). Well this EEG showed a seizure focus in the left temporal lobe (but the report which I know had and didn’t have when I saw the neurologist) stated it was probably either there as a genetic thing and all the stars were lined up to have the seizure (this neurologist is the one who put me on the Tegretol .. 600 mg a day – I won’t see him until August – actually ever again – he also told me since there were some enhanced areas tiny but different from the previous MRI I had MS – well I read the report – have the films and did some research and I am NEVER going back especially after that conversation with his nurse (Q. Any particular reason the doctor choose this AC over and against X, Y, Z – and another question – I won’t tell you what she said but it was the last of the RED flags for that office). I have to be on some AC and I have the Tegretol and the other psych guy who doesn’t have an appointment until September won’t let me out of the Hotel Klonopin until he is satisfied I am on another mood stabilizer. After the neurologist I saw a heart specialist and he looked at everything spent 2 ½ hours with my husband and myself and came right out and said – find someone else. He gave us to recommendations (for at least a second opinion – I don’t even meet the National MS Society’s criteria for probable let alone definite MS and this guy want to start me on daily aggressive injections with mega side effects in August. So I don’t know if I can drive because no one said they were taking away my license (the ER doc, my own doc, or the neurologist because they all are sure – that it was the Klonopin withdrawal coupled with the other lowered seizure level and the EEG report states that outright. So I am starting the Tegretol with much apprehension because sexual dysfunction and/or weight gain will just make my state of mind WORSE and I am not in the mood for that. Sorry this is so long and truly sorry Dr. Bob if it veers off topic – this board has been a life saver through this process with all the doctors, the supposed diagnoses, the tests, the medications, etc.
How long have you been on it? May I ask how much weight is slight and also what it is you are on it for – you do not have to answer any of those questions – but as you wrote in your post – not many people seem to be on it? Can you clarify and/or give me an example of the fuzziness you referred to. (I really am sorry about the length – I am notorious for feeling the need to put things in context – you mentioned that your doc said that those side effects would abate – I just feel like I get the bum’s rush with these doctors. I have an excellent eating disorder therapist at this practice with the psych doc (different totally than the point of service doc and the neurologist – whose nurse gave me out and out INCORRECT information) – I can not see her if I find a different psych – I am considering attempting to find a neuro-psych but none of this is easy – especially with 3 kids and husband, etc… BUT things could be worse – and they are my husband just told me we have termites! L ! – Still and all it still could be worse right!!
Thanks a lot REALLY -- Sue
Posted by fiona on April 24, 2002, at 20:50:21
In reply to Re: TEGRETOL: Does anyone take it ?????? » fiona, posted by 2sense on April 20, 2002, at 17:02:57
Hello,
I am on tegretol for cyclothymia and I have not been on it very long, only 2-3 months so far. The fuzziness I referred to is quite hard to explain really, I guess a lot of the time it can just be a feeling of drowsiness, like the kind you get from antihistamines (if you've ever taken them you'll know what I mean). Other times it can be forgetfullness, like I'm my 90 year old granny with dementia. I wander around from room to room trying to remember what I was doing or where I was going. (I suppose I am grossly exaggerating in referring to dementia but it's all I can compare it to). These feelings are not present all the time, but visit me from time to time whenever they see fit, Dizzy fairies my sister calls them. (She is on the same meds).
The weight gain is a bummer, as I am already overweight but I would say I gained around 6 or 7 pounds when I started on the tegretol, it has sort of evened out slightly and I haven't gained any more, but I haven't lost any either! My doc says that everything should settle down soon, so I am keeping my fingers crossed. One thing that has settled down is my menstrual cycle. When I first started on the tegretol my periods went haywire and I had 3 periods in one month! Now it has gone back to normal and are regular again. I don't mean to alarm you by that, it is only because I am on a contraceptive pill and tegretol interferes with it, hence the problem with my periods. This problem has evened out and is no longer any bother. I am hoping that all the other sideaffects will do the same.
I don't know if this will be any help to you, but if you want to to know anything else just ask. I will answer what I can.
Take care,Fiona
Posted by 2sense on April 25, 2002, at 6:01:22
In reply to Re: TEGRETOL: Does anyone take it ??????, posted by fiona on April 24, 2002, at 20:50:21
Fiona --
I am on it for anti-convulsant purposes -- but my psych doc is overjoyed long story. I am supposed to get up to 600 mg a day -- I currently am just taking 200 mg it will be a week tomorrow and I will probably go up another 100 mg.
I have heard 1/8 - 1/4 about weight gain -- then another no change and then another weight loss -- are you on other meds? How much weight are we talking about -- if I may be so personal -- I am in therapy for anorexia -- so the weight gain is not an easy thing (along with sexual dysfunction -- that I guess isn't easy -- either thing isn't easy). The side effects are so far ranging and when you pin them down to real time (like this board) versus the manufacturer's insert and/or the actual PDR (one and the same just about) -- or something that simplifies like The Pill Book --well thanks for answering. I'll look for more ... you guys/girls -- are GREAT!
That is what is good about this board -- docs/nurses/pharmacysts -- they have all different agendas -- I am NOT implying that they are bad ones -- they do have liability, many other patients, etc, ... on the board you just get the straight: "Here's my experience, yours might be different." If there is a match you don't feel like it is just you (like the fuzziness you describe -- reknown for this 1st line anti-convulsant now used regularly during this 'mood stabilizing' era -- I am not putting the use of it down -- I just was a guinea pig of the Prozac area when I went through the first bout of anorexia -- I was married to a PhD in C.S. didn't drink/drugs, just used me as his punching bag -- so it is me they treated -- not him. Well I finally left. Sorry if I took a turn in the conversation topic -- I am just saying with all I am reading and hearing EVERYWHERE about anti-convulsants being used as mood stabilizers it just reminds me of the early '90's -- there I go -- I refer to my fuzziness as dementia too -- repeating myself :-).
Sue
Posted by dove on April 25, 2002, at 10:47:23
In reply to Re: TEGRETOL: Does anyone take it ?????? » fiona, posted by 2sense on April 25, 2002, at 6:01:22
Tegretol was one of the first psychoactive meds I was ever prescribed. At the time, I was 19 years old, mother of one, fulltime college student, and working in the home health care business as a personal care attendant (PCA) and home health aid (HHA).
I was having 'black-outs' or fainting spells, and was told that they were either "everyday" syncope episodes or some form of epilepsy. I had MRI's, CT Scans, lots of labs, EKG's and EEG's, with no minutia that supported the Epilepsy dx.
However, I was dxed with Epilepsy and prescribed Tegretol despite those facts (or lack thereof), and was told it would significantly help relieve much of my life-long depression (since age 7) and be a splendid mood-stabilizer. I was started on 150 mgs. x3 per day, with the ramp-up plan consolidating at some 1,000 odd numbered mgs. I had blood work done only once while taking this medication, and that was before I ever started it.
Move forward, two months in and still unable (and "unwilling" in my Neuro-Doc's opinion) to up the dose from the initial introduction prescribed dosage. Tegretol was, and still is the worst med I have ever had to take; yet, many people have very good results with this med.
I had extreme brain-fog, couldn't even keep track of what day it was, or even the time of day. I became very complacent--family and friends described me as catatonic and zombie-like--unable to figure out even the simplest of tasks (like making Mac-n-Cheese). I became extremely withdrawn, depressed, suicidal, and lost all appetite. Three of my significant supporters called both my General Neuro-Doc, my specialized Neuro-Doc, my Internal Med Doc, and even my Family/OB/GYN Doc seeking help and answers. There were no replies, not a single one.
I finally contacted my prescribing Neuro-Doc and told her that I had dropped out of college, wasn't working, and thinking about suicide in a serious way. She actually had the nerve to yell at me--seriously--for being such a wimp because the amount of Tegretol I was currently on was not even the average dosage for a 4 year-old. She stated in very strong words that it was impossible for me to be depressed on this med as it is an anti-depressant and she doubled my daily dosage just to prove it.
First morning with the double dose and I was comatose for 30+ hours. Woke-up to find that I had lost an entire day and my little boy had fed himself milk and saltines while I was out-of-order. And that was the end of my Tegretol experiments. It took at least two weeks for it to clear-out. In the meantime, I had 4 "I"s for Incompletes/Fails at the University. I had lost weight during the months I was on it, but I was already skin and bones at the time (I would love to trade this post-five baby-maker body for that old scrawny one for a week or so :o) I have no idea what my libido or sexual response state was like during that time period as I was in zombie-land. Although, I did become pregnant with my second child sometime during the last two weeks I was on it.
There are so many other AED's these days that I always question any Doc wanting to put their patients on old-timers like Tegretol??? Tegretol is well known (infamous, one might say) for its dirtiness and there are many other seizure controlling and mood-stabilizing meds out there, why go back a few decades of pharmaceutical advancements? Especially considering this was a one time seizure almost assuredly med-induced?
I hope you have good results with it, or they prescribe something else and do additional scan and lab tests before sending you through hell and back. A second opinion, or even a third may be crucial and pivotal in your situation.
Best Wishes to You!
dove
Posted by 2sense on April 25, 2002, at 12:32:07
In reply to Re: TEGRETOL: Does anyone take it ? Not Anymore!, posted by dove on April 25, 2002, at 10:47:23
dove --
I feel like I have descended into hell ... first the psych doc who wouldn't take me off the stupid klonopin/clonazepam (which I was put on over a year ago at 0.5-1.0 by his psych nurse since he NEVER was there and it increased and it was for sleep -- which isn't the purpose for it and ISN'T to be used for that). Now the psych doc is back in the picture after 6 years because the psych nurse moved to CO and is so overjoyed I am on it because of the mood stabilizing thing (he believe I am polar something -- and I HAVE NO SYMPTOMS -- man I know I have to find someone else but it is the neurologist who has his own agenda who put me on the god-awful Tergretol. As I write this I can see how one could read a bit of paranoia into it --- but you must understand that I have caught hospitals, doctors, as well as insurance companies in fraud -- kick backs, etc. I have the paperwork -- it is not my imagination but my husband is Mr. "let's not rock the boat -- you can't save the world" -- this is true but what about my world. Thank you for this post -- after just 100 mg. once in the AM and once in the PM I have a spotty memory (and before the Klonopin and now the Tegretol -- really both generic which is a whole other discussion) I had a photographic memory). I do not have a lot of choice about finding a really good psych doc + there has been so much stress with my illness (outside of all of this crude) -- I see an eating disorder therapist who is EXCELLENT and we are going to start with an awesome therapist for family counseling -- unfortunately I/we cannot see them unless we see the psych docs too -- see the dilemma? I did talk to my insurance company and when they heard that this neurologist pegged me for MS so they would cover their daily injections that are a grand/month based on very little concrete "evidence" for the diagnosis -- well they weren't real pleased and let me stay confidential and seem that perhaps they are willing to help out -- I don't know -- I'm going to keep going, keep praying. You don't happen to know of an EXCELLENT psych doc in Western PA?
Sue
PS THIS IS A JOKE, REPEAT A JOKE. I lived all over the country but grew up in Princeton, NJ. Every place has neat things and people about them and visa versa -- this particular place is deemed (the originals tell the outsiders this themselves) that the area is "parochial and provincial" -- well that's one way of stating it -- but I am waiting for my ruby slippers to come ion the mail/via FED EX/via UPS whatever -- so I can slip them on and click my heels 3 times AND GO HOME where logic and intelligence aren't dirty words!!! :) Thanks again!
Posted by dove on April 29, 2002, at 13:22:07
In reply to Re: TEGRETOL: Does anyone take it ? Not Anymore! » dove, posted by 2sense on April 25, 2002, at 12:32:07
>
>As I write this I can see how one could read a bit of paranoia into it --- but you must understand that I have caught hospitals, doctors, as well as insurance companies in fraud -- kick backs, etc.
>
>I read *NO* paranoia in your statements, I also *know* how the medical community can work at times (my Grandpa was a Doc/Surgeon who had a lot to say on the matter)!
>
>-- I see an eating disorder therapist who is EXCELLENT and we are going to start with an awesome therapist for family counseling -- unfortunately I/we cannot see them unless we see the psych docs too -- see the dilemma?
>
>That *is* quite a dilemma, thankfully, you have at least one professional there to support you. Remember, they can't force those meds down your throat. A little distortion of the truth may be of great help to you regarding the meds and the psych-doc (and Neuro-doc). If you physically cannot handle the Tegretol, don't take it and report to your doc's that the med is completely unacceptable, it is nothing but detrimental to your health on every level. If they still refuse to see reason, you absolutely *must* find a new p-doc at all costs!
>
>I did talk to my insurance company and when they heard that this neurologist pegged me for MS so they would cover their daily injections that are a grand/month based on very little concrete "evidence" for the diagnosis -- well they weren't real pleased and let me stay confidential and seem that perhaps they are willing to help out -- I don't know -- I'm going to keep going, keep praying.
>
>This is a very good sign at this point in your journey, even though the insurance companies are often the 'devil' in most situations.
>
>You don't happen to know of an EXCELLENT psych doc in Western PA?
>Wish I did!!! However, I'm located in a Midwestern, snowy, mosquito-infested state and can be of no help there.
Best of luck to you Sue! Keep us updated!
dove
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