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    Old 02-25-2003, 01:49 PM   #1
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    Question Long term effects of Tegretol


    I'm taking 600mg of Tegretol a day (I take it before I go to bed at night). I've not been on it for very long and I'm wondering what the long term effects are. Anybody here been on Tegretol for longer than a year or so? I'd love to hear from you!



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    Old 02-25-2003, 03:58 PM   #2
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    Hi nic,
    I have been on tegretol for nine years and so far so good. To my understanding tegretol is a very safe drug. It sometimes takes some getting used to but I live a fairly normal life. You don't have much to worry about. Hope this helps.

    Old 02-26-2003, 05:38 AM   #3
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    Hi Pineapple!

    Thanks for your reply! I read a bit on the internet about Tegretol and have learned that's its the safest epilepsy drug on the market. My concern were the long-term effects. So far my only side effect is drowsiness. Again, thanks for putting my mind at ease!

    Take care!


    Old 02-28-2003, 02:21 PM   #4
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    I also was om tegretol and found out that I was allergic to it after having a grand mal that ended me up in icu and no longer can I take it.One side effect that it is responsi ble for me is shortness of breathe,I never had this problem prior to taking it Donna

    Old 02-28-2003, 03:03 PM   #5
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    hello nic,
    I was diagnosed with t.l.e and had complex and simple partials,I was put on 400mg of tegretol,and did quite well on it apart from tiredness at first.Then afterafew months my hair started to thin out a bit.I went back and told the neuro who imediately weened me off and onto lamictal.He said tegretol can cause thinning hair but was surprised this was happening,but to be on the safe side i could have lamictal,which is a nineties drug,so only time will tell how I go on with lamictal.To be honest I think you will be alright on tegretol,as I said it's been around awhile.I wonder now if tegretol did make my hair thin out,because since changing to lamictal,I have discovered I have an autoimune problem,and my imune system is attacking my thyroid and causing me to be hypo(underactive thyroiditis).Eventually it will destroy my time.But one of the side effect of thyroid failure is....yes thinning hair.
    take care

    Old 03-02-2003, 08:53 AM   #6
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    Thanks for your responses everybody. So far so good for me and Tegretol. Like I said, the only side effect I have had is drowsiness. There's no way I could take it during the day so my doc has me on Tegretol XR and has me taking it at night before I go to bed. I've been reading that its the safest E drug on the market so for now I guess I'll stick with it.

    Take care everybody!


    Old 04-03-2003, 07:03 AM   #7
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    Do you know if Tegretol is the same thing as Carbatrol? The lady who does my blood test told me it was. Just wondering if you could help me.

    Old 04-04-2003, 08:42 PM   #8
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    Hi Hawk,
    Carbatrol is the generic version of Tegretol, so the answer is yes. I'm being weaned off of Carbatrol and placed on Lamictal because I was still having pretty bad grand mal seizures. I find that my ability to concentrate seems better now that I am taking less carbatrol. I agree with Nic (hi Nic ) that the carbatrol/tegretol causes pretty debilitating drowsiness in some. I have never been a napper, but I can't survive a day without a little snooze mid-day now. We'll see if it improves when I'm totally off Carbatrol. Doc did say that we have to remember that the goal of seizure meds is to slow down those damned electrical impulses that cause seizures. The Doc went on to say that it makes sense that it would slow our bodies down too. Speaking of's off to bed for me. Hugs to all! Kathy
    When Mamma ain't happy ain't noone happy!

    Old 04-06-2003, 11:33 AM   #9
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    Hi there Nic and All !
    I am normally on Spinal Cord Disorders page but as I have had a problem with Epilim ( and previous to that , Tegretol) I was very interested to read of all the answers .
    Due to terrible Nerve Sensations and pain in my ribs , legs, back etc, after my third Spinal Cord operation, the N/Surgeon put me on Tegretol to stop/block messages getting thru to brain.
    This did help, but I nearly went into a coma , couldn't be woken up, so they then put me on Epilim , which I have now been on for 6/7 months. It has no affect at all sleep-wise , but just lately especially , when the levels of Epilim had gone down too low in my blood and had to be increased to help pain again, I noticed my usuallly normal thick hair was coming out on my hands when rubbing in Hair Gel!.. I thought I was imagining it for a start , but no, it's still continuing, and my hair is thinner all right!
    I rang the Company ( Toll Free ) overseas in Australia, and was told Hair Thinning is definetly a side affect ..
    other things can be Weight Gain,( which is possible as well for me,) vomiting ( not me ) , so this was very interesting ?..

    I then rang our local Pharmacist and he told me, " Don't worry, you won't go bald , but Curly hair is also a thing which can occur as well !"
    .. Well, This has happened to me too!!. And I have Always blown my hair dry to make it STRAIGHT!! It doesn't work now !
    Anyway, thought this info may be of an interest to some of you.. ? Take Care .. Belle xxx

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    Old 04-07-2003, 07:23 AM   #10
    shannon taylor
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    Hi nic!
    I am a 34 y/o female and was diagnosed with TLE when I was 13. I have been taking Tegretol for 21 yrs. A lot of the messages that I have read are from people that are telling you that the side effects are ok, which they are, but there are indeed long term side effects from Tegretol. Tegretol makes your liver have to work a little bit harder than it normally would, therefore, after a period of time, the whites of your eyes will begin to look faint yellow in color, etc. Your doctor should be having you go for a blood tests about every 6 months to test your blood levels (they should be between 4 and 10 which are normal levels for Tegretol). (When I first started taking Tegretol, I was seizure free for about 8-9 years and life was good. However, my seizures came back and I have continued to have seizures until present day. I am now taking Neurotin in combination with my Tegretol. I take 200mg of Tegretol 3 times per day and a 300 mg. of Neurotin before bed each night.) When you go to have your blood work done for your Tegretol levels you might want to ask your doctor about drawing blood to test your liver enzymes, etc. They can do that. My hair has not thinned, thank goodness, and I able to function normally, have had two beautiful children that have suffered no side effects from my taking the Tegretol during pregnancy, both children were born very healthy. You will not EVER be able to donate blood or an organ because of the Tegretol. I was not able to breastfeed because of it. If there are any more questions that you may have, please let me know. I hope that I have helped you out in some way.

    Old 04-30-2003, 04:49 AM   #11
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    Hi Everyone,

    I have been on Tegretol for about 4-5 years and I too have been wondering what long term effects are associated with this drug. So far (touch wood) I have had no effects, apart from the occassional unsteadiness when walking, when I am tired. Slurred speach also when I am really tired. I live a normal life, I have to twin boys (I wonder if this was a result of the Tegretol ???), a steady job, and a happy and eventful/sporty lifestyle.
    When I was young (approx. 3 -4 years of age) I had a few signs of epilepsy (small seizures - pauses more the thing, or 1 minute, vertical blackouts as my mother called them), but that eventually dissappeared, or so I thought, until I was 25 years of age. It was my honeymoon, of all things (great timing! - not)when I decided to throw a grand mal in my sleep one night, and ended up in Hobart Hospital (Australia). 6 months later, my second Grand Mal, and hence the tegretol since then. So far, no signs of seizures, and everything has been fantastic in my life.
    But what of the future ? I hear all sorts of conflicting information regarding the long term effects of Tegretol. Liver, and blood problems etc.
    From what I gather, it is really a case of pot luck.
    Some people are and some aren't affected, only time will tell. Either way I hope we all can find the answers we are looking for, before it is too late.
    Too late for what, I'm not sure, but from what I have read tonight on this page, has given me peace of mind.

    Good luck to you all, and keep smiling.


    Old 04-30-2003, 08:12 AM   #12
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    Hello All,

    I have read through all of the posts on this topic and I have a few questions for those of you who have been on Tegetol for some time.

    Have any of you ever experienced depression on Tegretol? I have bouts of depression every now and then but it is still there none the less. My family has noticed it and I am concerned.

    Also, did your seizures stop right away after taking this med? I had no seizures in the beginning and now (3 weeks later) I have had 2 seizures in one week. The post-ictal with the last two seizures were horrable!! Never experienced anything like them before. They were extremely scarry. Is this normal or is this just not working for me? I have tried calling the doctor but he hasn't returned my call yet and I am concerned. I am soooooo tired by the end of the day that I want to sleep all night at 6 pm. Not like me at all. I am the night owl! I know that the tired part is normal for the meds but what about the other things?

    Please help if you can. Your other posts gave me insparation but I am still concerned about those other things mentioned above. Any help or insight would be greatly appreciated.

    Thank you all,


    [This message has been edited by KittyMom (edited 04-30-2003).]

    Old 05-06-2003, 01:58 PM   #13
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    I have been on Tegretol, Carbamezapine, and Carbatrol (all the same drug) over the last 10 years. I have had no side effects since I reduced my dosage in the early stages of taking the drugs.

    Tegretol is an anti-depressent and I would get overly manic and stay up for all hours of the night. They traced it back to my prescription and they reduced the amount of the drug.

    As for depression with the drug, I think that it may have to do with hormonal changes and the fact that you are still having seizures while taking it concerns me.

    I hope that you have been able to find some answers since your last post.

    Old 05-08-2003, 04:40 AM   #14
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    I was on regular Tegretol from 6yrs old to 15. I never experienced hair loss (as i have read that others have) but I believe that it has been responsible for the obiesity that I suffered through for many years, and it contributed to a bout of serious psychologic depression that I suffered with at age 11+/-. Now I have been (all too convieniently) diagnosed with epilepsy again (after going off ALL meds for eight years or so), and presently take Tegretol XR. Granted, this medicine has not shown ANY lethargic (tiredness) side-effects, and I have lost weight down close to my ideal weight, I am still examining the possibility of going off the med all together and simply monitor my diet and daily activities more closely. As many others have opined, it seems that doctors are all too eager to get patients pumped up on meds for various conditions, without thoroughly examining the situation OR ALL options (epilepsy seems to follow this logic more as the RULE). Frankly, I would rather just convert my lifestyle to wearing a helmet all day (for injury protection) and riding a three or four wheeled recumbent 'bicycle' (that cannot fall) rather than continue to pump myself full of drugs. I have recently reduced Tegretol XR from three to two at night, and at day two, my sleep has noticeably become considerably more efficient. When I wake up, it feels like I have had a 'good night's rest' (more REM sleep), not just a passive nap. My main concern, however, is how this drug (the XR version) poses other potential threats (due to being encapsulated in plastic, for one thing). It has also been linked to aplastic anemia, so watch out for the signs!

    Old 08-24-2003, 03:31 PM   #15
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    I don't know if this discussion scares me or makes me feel better. I have a minor seisure disorder which results in 5-8 second seisures in an arm, leg, or part of my face, sometimes the whole side of my body. The bad thing, is that I got a dozen every day.

    I kept it hidden for years (it started about age 10) and it wasn't for a feew years that my dad noticed it and took me in to a neuro. 100mg of Tegretol and I was cured, but have since bounced around from 100-300 and was recently put on 2x200 Tegretol XR.

    I started looking for info on side effects because I've experience some side effects including minor depression, lack of motivation, and poor concentration. But reading this board, I see other side effects I've experienced including hair loss and drowsiness.

    I also recently learned it was a mood stabilyzer and wonder if that has contributed to my mellow personality. I've been on the drug about 13 years.

    The problem is, I can think of causes unrelated to the medication for all my symptoms, but to have so many symptoms, especially after upping my dosage to a level I see full epilepsy patients taking, causes me concern.

    Anyone have any thoughts?

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