side effects of tegratol?

[wichitarick]

hi
I have a seizure disorder and have granmal seizures and have recently been switched from dilantin to tegratol BUT as of about 5 mos, ago I have some pretty serious things going on that are the exact things that are listed as side effects of this drug.
Ringing ears (constant)
soreness
serious memory loss
almost a general euphoria (pot like)
a general unsteady ness no balance.
other things that i,m trying to get the doctors to listen to me about.
I am afraid of this stuff as when I start taking it and then I tell a doctor they will just say it is the meds>
I had three in one day for the first time and have not been the same since and now they are saying not to go back to work either and I,m very stressed out .
any one take this stuff ? any one take meds and still have seizures? please respond .
they act like i,m lying when I have told them I was on full meds and had seizures.
I,m trying to find some balance here.
Rick in wichita

[Mark of London]

In comment to Tegretol slow release. Currently I take 1800mgs a day. Im a low-grade astracytoma sufferer, had debulking surgery last Dec 05. I get seizures even though I take this amount of the drug. Doctors suggest that I up to 2000mgs a day, Im hesitant as 1800 a day does not really stop the big seizures from happening. I have some balance problems,but think thats due to the quantities taken.I have generally the same feelings as "WICHITARICK". But I have not much choice as my condition is quite serious.
I will ask if doctors can change my medication within three months, or on my next scan date, as it is suggested to have no more than 1200mgs of Carbamazepine. Ok this my mail if any comment needed [e-mail]

[addy92]

I've only had 2 seizures back in 12/01 & 5/02, I haven't had any more but my doctor is actually changing my meds from dilantin to trileptal, I still don't know how my body will react to it, if anyone out there has been taking trileptal, please let me know how the transsion was.

[kells]

I have been taking tegratol for only a few months ang have only had one granmal. Is it ok to drink? I find I can only drink up to two drinks and dont know if it is ok to use other amphetamines whilst taking tegratol??

[illidge]

i remember everything until i was prescribed tegratol when i was 7 and suffered a run of epileptic fits, i even remember the appointments when i was told to slap one of my hands one the back of my other hand to see what my co-ordination was like, and the tests until i started taking the meds then it is all a blur until i was 10 and it had been that long scince my last fit that they weened me off over the space of a year, i started with migranes at 11 and depression at 12 for no valid reason, i'm now 28 and still suufer from bouts of deppression once again for now reason,and i may sound like a freak but have only teratol to tie it all to so if any one has any answers?

[Wendy Dalton]

My mom has suffered from Trigeminal Nueralgia. She has been taking tegratol for about 5 yrs now. About 1 month ago, she satrted getting these little red marks on her shoulders, they have since moved and are up and down her arms and on her breast. The coloration is red and it looks like its starting to go white

[Melissa Cruthers]

Since I have started taking tegratol I have had clearer thinking and am not dealing with racing thoughts. I was prescribed this medication for muscle spasms. But I have found that it has helped my AADD. I feel great!!

[LEG PAIN]

I took this stuff for two weeks, by the end of the two weeks I had blown up like a balloon, my heart was beating like it was trying to get out of my chest, my ears felt blocked and full of pressure. I told the doctor on my return and she ordered me off the stuff immmediately, without stepping down just quit. I had blood poisoning, and some pretty severe reactions. I wouldn't give this drug to my worst enemy. I was taking Tegratol for radiculopathy, severe pain in my left leg from a severed spinal root.

[angie]

my son was put on tegratol when he was 3yrs and taken off it at the age of 13 he was on 800mg a day. now he is 23 we have noticed he left side is starting to twitch he hand goes all the time and he has tunnel vision. we are going to see the specilist about it but the gp might think it is a side effect. he is also very moody. dose any one have the same side effect as my son.

[Roxy]

I've been taking tegratol for about 9 months for bipolar disorder. It has stabilised my mania to a good degree, but isn't without side effects. Dry mouth,'foggy' memory, ulcers and a 18kg weight loss; despite these side effects, the positives outweigh the negatives. However, I have concerns as to it's safety when it comes to pregnancy -literature I have read states that it may cause birth defects, particularly spina bifoda. This is a particular concern when there are so few contraceptive options available for takers of Tegratol. There has been very little study to determine the level of risk in humans -only rats! How can a widely used drug have such crucial unknown side effects!

[Kathy]

My doctor just called this perscription in. I was on Neurontin and not getting any relief from nerve pain in my upperback / neck area. I have a slipped disc in my cervical area. I have not been on the Neurontin for more than 10 days and know the dosage can be increased to see if that works but he just had a nurse call me in this Tegratol. The Neurnotin made me feel buzzed....I was light headed had pressure in my ears (only first couple days) and am dizzy. Has anyone been prescribed this for a slipped disc and did it provide any relief? I was supposed to have regular blood monitoring when I was on N but doc/nurse did not say I would have to do the same with this med as they just called in the script without telling me. I have not read any information regarding someone taking this for my condition. Any input would surely be appreciated!

[Troy]

I have been taking 200mg of Tegretol since '95 when I had my first seizure. I have had a total of 6 seizures in 12 years.(all gran mal) My seizures were a direct result from Carbon Monoxide poisoning (accidental from forklift at work). I have had many side effects mainly ringing in ears, unsteadiness, and serious memory issues along with cognitive issues. All these are managable and I have come to accept them. They outweigh the risk of having another seizure. Your not alone Rick in Wichita, keep after the docs they will listen or get referred to someone who will.

[Gill Mccall]

I have suffered from gran-mal sezuires from the age 10 got diagnosed 1yr l8r and am now 26 with a 7yr old son and take 1600mg of tregretol daily and wasnt made aware of the severe risks that happen during pregnancy e.g spina-bifida and cleft pallete.i was told 5months in2 the pregnancy of these problems and was horrified that i should have been taking vitamin K 5-6months before i even tryed 2 conceive! Please b careful if u r thinking of starting a family and make sure u receive PROPER medical advice because i didnt and have never been so frightened in my life!Thank god my son was born with no dissabilities at all even if he had i would have loved him the same but the fact that i wasnt told about these issues horrified me and now i am thinnking about a family in the future i will b taking the appropriate measures to make sure i do not have to go through the pain that i did befor,So b careful and always ask questions!!!!!!

[jenny foote]

I am not a member, just after information. My husband has been taking Tegratol 200-400 mgms daily for approx 8-9 years.Regular tests show below theraputic levels are controlling his mood swings. Last week he became disoriantated, walking as if he had severe parkinsons or MS and slurred speech (he is now in hospital). Could this amount of Tegratol cause his problems and if withdrawn / reduced with he regain his balance.
Jenny ([e-mail])

[Deborah]

I've been taking Tegretol for seizure prevention during the time that I withdraw from klonopin. The first couple of months, I thought it was great for the calming effects, but things progressively got worse. My memory was totally shot. It is very difficult to combine other medications with Tegretol as well. Right now, I'm on Tegretol and everytime I take it, I can't concentrate on a task. Right before I take my dose I'm completely fine and then when I take it there is total confusion.

I do think that some people will benefit from this medication. It has a good calming effect, but on the other hand, it made me not care about my responsibilities. I felt like an air head; not grounded. Also, get your thyroid checked when your on Tegretol; it causes low thyroid which could contribute to depression and mood swings. I think this medication works differentaly for each individual.

God Bless
Deborah

[Fred]

kells wrote:

I have been taking tegratol for only a few months ang have only had one granmal. Is it ok to drink? I find I can only drink up to two drinks and dont know if it is ok to use other amphetamines whilst taking tegratol??

Well it depends how much you take and it is different for everyone, I've been on it since the age of 14, and I pretty much drank my way through high school and university, but its a risk, its particularly draining, I was on a 800 mg of tegretol for a long time, but I noticed that I had barely any symptoms when I went out drinking when I dropped the meds to 400 mg a day, 200 in the morn and 200 at night. I find it to be especially responsive to coffee (my best friend and worst enemy) I get serious highs off it and serious lows, I guess the worst thing is being tired, it drains energy. I would suggest you be caregul. I only had one granmal too in my life, but I had about 5 or 6 aphasia seizures were I can't speak. the one thing that sucks about this med is that I feel like I never know if I feel like trash because of the meds or because I'm epileptic, or whether its playing with my moods (thyroid related or not) I think that one certainly shouldn't lack sleep when epileptic and on tegretol, that seems to certainly be the deadly one, working over 70 hours a week and drinking much coffee is a complete disaster on tegretol, from what I hear there seems to be various alternatives, I don't which one is more valid, but when one has such a demanding job or school life style, its hard to take a few months off to just change meds.

[Rose Clayden]

I had a terrible fall a week and a half ago hitting my head hard on the concrete. A minute later I had what people assume was a seizue. Could not breathe, speak, move and lost consiousness for a while. I do remember walking to the office after my fall. My head was spinning,I had chest pain and it felt like lights were shining in my eyes. I am told I turned blue and was not responding to anything. I have had may tests in hospital and none have revealed signs of epilepsy. An agiogram did show that there was a lesion in my artery which prevented blood and oxygen from reaching the brain. I have not received a clear reason why I have been put on Tegratol. I am having awful side effects and as a teacher am concerned how this will affect me when I return to work in a weeks time. I am a single mom with three children and have also been told not to drive for 6 months. Oh, boy not good news at all. Any help will be appreciated!

[Hannah]

Deborah wrote:

I've been taking Tegretol for seizure prevention during the time that I withdraw from klonopin. The first couple of months, I thought it was great for the calming effects, but things progressively got worse. My memory was totally shot. It is very difficult to combine other medications with Tegretol as well. Right now, I'm on Tegretol and everytime I take it, I can't concentrate on a task. Right before I take my dose I'm completely fine and then when I take it there is total confusion.
I do think that some people will benefit from this medication. It has a good calming effect, but on the other hand, it made me not care about my responsibilities. I felt like an air head; not grounded. Also, get your thyroid checked when your on Tegretol; it causes low thyroid which could contribute to depression and mood swings. I think this medication works differentaly for each individual.
God Bless
Deborah

I was put on Tegretol in early May and read your comments about side effects with interest. I have not been feeling well and energy level is low. I have always been up-beat but now am beginning to feel disinterested about everything and wish you would let me know how you are feeling now. Thank you.

[Michelle]

I have been having absence seizures for most of my life but never really had them checked out. Then about 10 yrs ago I was diagnosed with a meningioma tumour and underwent radiosurgery. A fortnight ago, I had a partial seizure, totally out and was admitted to emergency. It was diagnosed and I was prescribed Tegretol which I started taking about 10 days ago.
It made me feel do awful, I could not think, couldn't remember what I was saying, had no short term memory, dense brain fog and soooo tired, stomach cramps. Absolutely no focus. I'm an engineer and nothing made sense. It was just horrible.
The day before yesterday I stopped taking them. And today I can safely say I'm starting to feel half normal, getting my edge back.
After just one seizure, I cannot go through the rest of my life feeling so bad.

[Leslie Chambers]

Michelle, hello. I live in Dubai also ! Small world. I also take tegretol. I take 1200mg aand Keppra because of my epilepsy, I had a brain surgery from an anyrsm when I was 14. I am 43. Married and 3 boys. I can relate to your side affects. Sometimes rough ! Be careful stopping meds. Make sure your Dr. is aware. Good luck