LTI Medications - have you had long term side effects?

embee

Hi all,

I'm just posting out of curiosity.

I am an epileptic, and I have been since I was about 10. I initially started out with abscence attacks and myclonic jerking, but it escalated to photosensitive epilepsy with grand mal seizures when I was 12. I was put on 1500mg of Epilim (sodium valproate) and was on that for about 10 years. I am luckily seizure free for the past 5 years, but I do suffer absence attacks from time to time, along with migraines that make me literally go blind.

Ever since I started on the Epilim, I've had recurrent twitching in my eyelids... basically, my eyelids (particularly my right one) is twitching about 75-80 per cent of the time. I have dizziness from time to time too. My neurologist told me that these were symptoms common with Epilim, but the thing is, I've been off meds completely for 4 years but the side effects never went away!!

Does anyone know if this is common?

mike65

Are you aware of this site http://www.epilepsynse.org.uk/ ?

http://www.epilepsyforum.org.uk/viewtopic.php?t=9905&highlight=eyelids

Is it possible its "learnt behaviour" and your eyelids need to unlearn? (not sure how that would be achieved).

Mike.

FranknFurter

Embee,
I too have severe photosensitive epilepsy and experience somtimes weekly / monthly grand-mal (tonic-clonic I think they call it now), seizures. Have had it since I was 7 and Im 29 now.

From the age of 7-20 I was on Tegretol for it, (a drug im now told I should never have been put on!)..... I now have no memory of my life from the age of 7-20, I get the odd flash of memory if im reminded of somthing but nothing coherant really.
In short, teg ruined the majority of my life till I stopped taking it 9 years ago.

Now I am on Lamictal, epilim, and rivotril. Im still having weekly / monthly seizures and am having a lot of other neuro problems associated with the damage they have caused over the years.
But I am currently under the care of Dr. Delanty in Beumount and I can highly recommend him.

I do know that epilim has a lot of side effects and they vary with each person. And iirc twitching can be one of them.
I also have MS and Spina-Bifida so I "twitch" a lot anyway and I couldnt say if its actually to do with the epilim.

I do know it can be a sign of little "mini-seizures" though so I would advise talking to your neurologist about it and asking him / her if he / she thinks its relevant. They may decide to do an EEG to check.

B

nando

That's interesting about Tegretol. My mother is on longterm Tegretol treatment for a neurological problem in her leg (reflex sympathetic dystrophy) that she developed following surgery on a broken ankle. She doesn't feel it has any perceptable affect on her at all. She is on a low dose though and I'm sure the dose is probably quite a bit higher for treatment of epilepsy so I'm sure that makes a difference.

It's funny how people end up on long term medication that's causing them problems before anything is done about it though. My younger brother has Aspergers and ADHD and was on Mellaril for years as a child/teen. He often complained he was "having a heart attack" but it was usually dismissed by everyone, including his doctors, as attention seeking - just like all the times he claimed he had a broken leg so he couldn't walk to school or a broken arm so he couldn't write. Then all these new warnings came out about possibly fatal arrhythmias that could happen with the drug. He was then found to be suffering these arrhythmias and taken off the drug. We probably should have listened more about the heart attacks...

FranknFurter

For a long time on Tegretol I didnt realise it was affecting me at all, it seems to be a drug that most people dont realise the harm it has done until they come off it.

B

wexhun

I'm on tegratol at the moment for trignamel neuralgia (excuse brutal spelling) and the highest dose of effexor xl for depresssion. I do notice that I can 'space out' at times and am not completly aware of it until someone says it to me, I did put this down to a symptom of depression. In reading the previous posts now I'm a little worried about long term effects. I've been on effexor for about 9 years now and do think I am a bit emotinally numb but on the plus I'm not suicidal hey:rolleyes:
I realise I need to take these drugs especially the effexor to treat the depression but are the side effects worth it ie. in quality of life? in saying that what would be my quality of life be without the drugs . Sometimes we can put down what may be a side effect of the medication to a symptom of the disease, if you get what I mean.How do we know where the drug ends and the disease begins? Ha I've got you all confused now haven't I?:D

FranknFurter

Tbh, im reluctant to tell anyone my experience of tegretol here as I dont want to be accused of advising anyone not to take their meds. Otherwise I would have a lot to say about the drug. So unless a mod says its ok for me to talk about my experience of the drug ill have to say nothing. Which I have to say, makes me feel bad as my experience (after some research) seems to be common and rather neglected but ultimately life-altering

B