tegretol and side effects

[Hand of Blood]

has anyone had real bad side effects from them? and what are ya side effects?

i been on em for abut 6 years now was just 800mg now im up to 1000mg.... i always did have bad side effects but to th point now where im scared to go out the door coz i feel so bad

i get blurred vision and brightness of lights, dizzyness, panic attacks, depression, out of body experance, aura i feel like im going to fit but i dont not sure if its the tabs but it prob is.... its got so bad now that its there all the time, twitching

if anyone can let me know what they get it would be helpful so i know im not alone , ta

 

[RobinN]

I think that is was Rebecca was beginning to experience. I pulled her from it early on. The vision problems were unacceptable IMO

It took about a month for it to get out of her system.

 

[epileric]

You're definitely not alone, I get all the side-effects you do but they're not constant. Just the odd day I'll feel the dizziness or see spots in front of my eyes. Personally I've been on it for so long (over 35 years) that I consider all those things just part of who I am. I"m taking 1600mg so I'm actually impressed that I don't get more side-effects.

I rarely get the panic attacks but when I do I never thought to associate them with my meds. Thanks.

 

[Hand of Blood]

yeah iused to be able to say its part of me o its just the side effects...... but now its gotten so bad i dont feel normal any more i feel like im almost breaking down slowly ... its so hard to describe to prob just out of body

 

[epileric]

My advice would be tell the neurologist ASAP. S/he may have another option for you.

The whole point of taking these medications is to increase the quality of our lives, when they start decreasing the quality of life we have to find something else.

 

[crannsmum]

My son started out taking Tegritol, managed the seizures brilliant, never fitted once whilst taking it. After about two years he started to show signs of depression, withdrew from activities that he used to really enjoy ( he's Autistic so not able to verbally express himself ) and lost all his lust for life. we raised our concerns with his consultant because we felt he was on too much meds. His consultant came to the conclusion that because he was still growing he probably wasn't on enough meds and raised the dosage instead! This turned my son into a total zombie who couldnt even raise a glass to his mouth without shaking so bad he spilt it, certainly not able to function at school and spent most of his time looking like his mind was trying to fight through fog. We went back and he is now on lamictal, the fog has lifted and we have our son back. although not well controlled but were working on it. perhaps it's worth getting it looked at again cos it's no fun!

 

[jax22]

hi,

I have a question along the same lines. I just started taking tegretol fairly recently and lately I've noticed distinct memory loss, where I can't remember something that I KNOW I know the answer to and it's not even like it's on the tip of my tongue, it's just gone. I'm going to call my doctor and ask, but I just wondered if anyone else experience something similar?

 

[epileric]

Oh yes.... memory loss is definitely a side-effect that I also get from tegretol.

Something interesting though that started happening to me in the last few years is remembering things that I'd forgotten years ago out of nowhere. Of course when I try to remember what I remembered, I can't.

 

[Hand of Blood]

i told my doc and nerologist throughout the years but they do nothing about it its like they look at me as if im lying or somthing!! i always thought it was something else but now i know its either my meds or small seizures im having .. but it did get worse when they put my meds up and i was having seizures again which is only about 3 months ago i really dunno who to turn to coz i just get ignored! i even had thoughts out harming myself just to get attention

 

[crannsmum]

Hand of Blood, it's really brave of you to be so honest. I'm sure there are many people here who have at some point in their lives felt like you do right now. Harming yourself will get you attention BUT not the sort thats going to be any help to you. You have taken the first steps to trying to tackle how you are feeling....your posting here! I'm sure everyone here will support you all that they can but you owe it to yourself and your family to try and get your voice heard with your docs. Tell them how bad this is, how you have considered harming yourself. confide in a friend or family member and take them with you, they may be better at explaining this than you at the time. I cant tell you how many times I've come away from the docs feeling that I havent been heard because I havent fully explained myself. Another option is to write down everything, make a copy, keep one yourself and give the other to your doc. That way you dont forget anything and he/she has it in black and white, then they cant claim that you didnt tell them. It's also helpful to have your copy to look back on, as things start to improve so you can see how far you have come

 

[Hand of Blood]

thank you yeah writing down is prob helpful i have explained everything to them but i been trying for that many years that i get confused now when trying to explain haha thanks for the help your right i need to keep seeing them and telling them it just so hard to explain.

 

[Nakamova]

You might ask for a neuropsych evaluation -- it sounds scary, but it's just a series of memory tests administered over the course of an hour or two. The tests are standardized, and the results will let you know where your memory is strongest and where you may be having trouble. It sets a baseline, so that if you take the test again later you can see if there have been any changes or additional loss of memory skills. Different kinds of memory are tested -- visual, short-term, etc. so you can get a very useful picture of what's going on, as well as tips for working on the areas that need help.