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
poster:2sense
thread:103031
URL: http://www.dr-bob.org/babble/20020416/msgs/103659.html