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Posted 5/2/2005 1:13 AM (GMT 0)
Hi..

I am not epileptic, but have a seizure disorder... I just have a question since i have noticed a few people talking about Tegretol.. Does anyone know the long term effects of Tegretol? I probably shouldnt ask since i have anxiety lol but i would like to know..I am 25 and have been on Tegretol since i was 18. Recently i have noticed issues such as having a hard time finding the word i am looking for.. as if its all on the tip of my tongue.. not sure if that would be medication related.. have been seizure free for almost 4 yrs now and i believe after 5 yrs of not having a seizure, they may want to take me off of meds to see if i can be completely seizure free,,,,,,,,,,, kinda scary cuz i dont want to take a chance on ever havin one again.. anyways i am blabbing.. just wonderin the long term effects and what is considered "long term" as i have been on the meds for approx 7yrs..

Thanks,,

Posted 5/2/2005 3:42 AM (GMT 0)
Please be careful if you are considering changing meds or doseages.

I've spoken to my Doctor about changing my medication but he says that because of the long term use (25 yrs) If I were to change meds, I run the risk of lower brain stem damage or having more seizures (probably more serious).

 

It's not worth the gamble.

 

Randy

Posted 5/2/2005 8:44 PM (GMT 0)
Epilepsy and seizure disorder are the same thing. Both mean that you have recurring seizures....


Ask your pharmacist and he can give you FULL printout of information on it that is accurate too....There are others in that same class that have fewer side effects like Trileptal

Take care, Ginny
Posted 5/4/2005 8:03 PM (GMT 0)
Tegretol is "HARDCORE" to say the least but it works for me; as for me I have been on it for 24 years now and as much as I have complained about it life is much better with it. Long term effects can very but in most cases its your liver that takes the beating over time but please understand that is only in a percentage of cases not everyone that uses the drug; as far as the inability to find the word you are looking for I have to say....THAT BITES! I so hate that...I have been dealing with this for a very long time now and my neurologist says that it very well could be the meds; I know thats not much of an answer but a lot of things are taken into factor here and I have had many episodes over the years so my advice to you is to find a good neurologist and take your pills. My neuro told me two years seizure free and we would look at taking me off the only problem is that I have never gone two years. I will say this, "whatever you do coordinate it with your doctor please do not go at this alone those results could be very bad".
Posted 5/4/2005 8:22 PM (GMT 0)
boolie- 

I also agree about talking to your doctor and pharmacist for more info and advice...

 I was seizure-free and off meds for 5 years when my seizures returned full-force.  And now, no combination of meds will control them.  I know that is true for many people too.  I'm sure some people go off meds when they are seizure-free for a number of years and the seizures never return, but I am not one of them.  So, there are lots of things to consider when trying to make the decision to go off meds with your doctor. No Crystal Ball Here to help with making the decision!  As far as word-finding, I suffer from that as well- I don't know if that is the meds... or the seizure disorder...   

Take Care,   Glenda :-)

Posted 5/5/2005 12:57 PM (GMT 0)
Thanks so much for responding everyone.. The funny thing is that in comparison to alot of people i am on a relatively low dosage of tegretol.. see i started out at 200 mg 2x a day.. was great for a few years till i got pregnant,, and the drs think that my hormones were affecting but i had a seizure at 6 weeks pregnant,, they double my dose to 400 mg 2x a day (which still seems low in comparison) and my son is now 3, so almost 4 yrs seizure free. I didnt know that tegretol can effect the liver.. i heard once by an ER dr the day that i had that last seizure that my blood should be checked monthly for tegretol levels.. but my neurologist told me no.. that i am fine.. and i trust his word so far so i will leave it at that..i geuss i can live with the inability to find the word that i am looking for.. now me bein a hypochondriac the liver thing will bother me.. lol.. but i dont drink either so i geuss that helps too. Anyways, thanks all for responding Take Care
Posted 5/5/2005 4:38 PM (GMT 0)

Yes, boolie, lots of women reporting that hormones have affected their seizure frequency. (me too).  It must be more common than is reported. 

My liver tests have never been abnormal all these years on meds - knock on wood - but who knows how long that will last.  Since my liver tests were always normal, my neuro checked my blood tests only every 4-6 months, unless my dose was increased.  Guess others haven't had as much luck as I have.  As far as Drug Levels:  Depending on the situation and the doctor, some people have their drug levels checked more or less frequently.  I always tell my neuro that I don't need a big dose of ANYTHING to be effective, so that they are aware to check my levels on a low dose. He believes me now after I got toxic on Dilantin at a low dose.  It's just a communication thing.  I think if you can talk to your doctor and feel comfortable with him/her, you know they're looking out for you.  If they don't listen to how you feel, it's time to move on.

I think it's got to help to stay away from alcohol, that stuff's evil to the liver.  I wonder also what, if any, other things help the liver to remain healthy, in light of the fact that most of us will need to stay on these drugs for many, many, many years. (they are like poison to the liver, in a way).

Hope you do ok as far as the tegretol... I was on it a short time and had to stop due to  an allergic reaction, but it worked wonders for my seizure control.  Good Luck to you.    Glenda :-)

Posted 5/11/2005 6:44 PM (GMT 0)
boolie
Allow me to ellaborate on the liver problems that I have had with Tegretol (I really dont want to freak you out but you need to know the scoop). I currently take 800mgx2 of TegretolXR, originally and for about 19years I took just the regular tegretol now please understand that these are two different meds in a sense (the regular old tegretol and the XR). The regular old tegretol as I refer to it are generally little white aspirin looking pills if you crush them up they are chalkee looking very similar to an aspirin; I took these for 19years and tookpart in very regular blood monitoring, one day my skin began turning a yellowish color and the first thing that my general practicioner came back was Hepatitus as it turns out years of using the old tegretol was putting a strain on my liver I switched the XR version and things have been fine ever since (knock on wood).
Posted 5/22/2012 5:21 PM (GMT 0)
HI

I'm on Tegretol. 400mg twice a day. I am told that is a low dose...

I have lost a fair amount of memory function - I'm an actor so this is career changing and I am so upset I cannot tell you!!!!

I am losing, my hair. Also a big problem.

I now suffer from depression - I am told. But since I no longer remember what it is like to not feel tired and sad who knows. I started feeling this way shortly after starting Tegretol.

My immune system is not functioning properly and have had to begin a high test vitamin regimen.

I don't even consider drinking. I know what the drug does to my liver.

My eyesight has gone form not so bad to pretty bad ( by my standards)

I feel like a lab rat.
Posted 7/14/2012 11:43 PM (GMT 0)
I was on Tegretol for twenty years 16-36, before it started to become ineffective. I was on 2x200mg twice daily. when I switched to it from the combo of Dilantin n' Phenobarbital. I switch to Carbatrol in 2003. That switch didn't cause seizures.
Posted 12/17/2012 3:32 AM (GMT 0)
Hey Goodwitch46 This is a long time coming since you posted. What kind of results were you getting when using Lamictal and Zonegran? I am using 200mg and 300mg daily and 200mg x 2 daily each respectively myself. However, I am still having a nocturnal every 2 or 3 months. It would be OK if I would clean house when I walked around instead of making a mess:) How are you doing? I am thinking of trying to talk to my nuro about changing to Tegretol.
Posted 1/29/2013 4:09 AM (GMT 0)
I've been on Tegretol for 25 years without any problems. about ten years ago I switched to a slow release version, Carbamezepine. Works fine for me. If I miss a day or two, I feel the seizures "lurking," so I know I am not seizure free. Haven't had a seizure in over ten years. Blood tests all normal, according to doc. So, I suppose I don't have much choice. I will be on these meds for the rest of my life.
Posted 7/28/2014 10:50 AM (GMT 0)
I'm taking tegretol and have been for about 4/5 years I take 1200mg daily for epilepsy and I take that 3 times a day 400mg each time.
I've found it really interesting that people have problems fining their words because I get that too. I also have problems concentrating. The real problem with me though is that after each time I take it I feel really dizzy, spinning almost, I can't focus/see straight, stand up straight, I'm like a terrible drunk. I've had to come home from work today because it was that bad, I'm due another dose in a couple of hours and all I want to do is get all the tegretol I have and flush the lot, I'm stuck between a rock and a hard place. It's controlling my seizures perfectly but is making my life unliveable, every dose gets worse.
I did used to smoke cannabis but have all but given that up now, I also take 2500mg of Epilim a day.
Has anyone else had an experience like this, it's come out of the blue, I've changed nothing it's started effecting me in a much more extreme way.
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