want off Tegretol after 41 years

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Belinda5000

Account Closed
Inactive
Messages
2,241
Reaction score
0
Points
0
I've been on Tegretol 41 years and I plan talk my neuro on the 19th of coming off it! I would like to increase Fycompa and slowly come off it; since there are hardly any drugs I can take. I don't have much choice in what I can take.
I'd like to get some feed back from people please.

I wonder what Tegretol might have done to me because I've been on it so many years.
 
"Officially" there are no long-term side effects associated with tegretol. But that doesn't meantt here aren't any. You might check out this link: http://www.askapatient.com/viewrati...e=TEGRETOL&PerPage=60&sort=timelength&order=0
It has feedback from folks who like you have been on Tegretol for many many years. Some report no side effects, but others mention hair loss and bone loss, heart issues, fatigue, memory issues, etc.

Best of luck Belinda, I know your seizures have been rough lately. I hope you feel better after tapering off the Tegretol.
 
Do all e meds do this.and what if stop them suddenly.for instance typhoid don't eat for weeks.
I was very ill once and did not eat or keep anything up or down for over a month I don't recall my e causing any problems was I just lucky or can you stop stat
 
My neurologist has had me have bone density tests b/c Tegretol can cause bone loss. Tegretol can also slow down cognitive functioning and cause liver damage. I've been on it for 26 years. I'm afraid to go off it. I also take Keppra.
 
Last edited:
I am amazed to see people on this stuff for so long considering it almost killed me in only a few months.
 
I am amazed to see people on this stuff for so long considering it almost killed me in only a few months.

Dang! Care to elaborate? I'm sorry that happened to you. :(
 
Last edited:
Hi Belinda,
I was on tegretol for at least 15 yrs. if not longer and then I became allergic to the drug for no reason it was really weird. I found after going off the tegretol I didn't have such a hot temper and my seizures were still the same. One thing that was good about going off the tegretol is I no longer had kidney stones or infection that happened to me 2 times while on tegretol. If you do go off the tegretol and your Dr. wants to put you on trileptal I just wanted to let you know that's very similar to tegretol consider it like a second cousin. I wish you only the best and May God Bless You!

Sue
 
Dang! Care to elaborate? I'm sorry that happened to you. :(

Sure, tegretol was my first and worst AED, every increase in dose led to an increase in seizures and fatigue and bone pain until I developed aplastic anemia and could not walk across my house without getting winded or even passing out,
easy bruising and blood would leak from wounds/ minor cuts, poor clotting/ scabbing.

At 200mg I went from 1 seizure a month to 2 or 3.
At 400mg I went to a seizure per week.
At 600mg I was having 2 or more seizures per week.
At 800mg I was having multiple seizures daily.

Between the seizures and the anemia I was non functioning, could not take care of myself, could not do anything.
 
Me too! :)
One good thing about tegretol is it did stop my headaches completely.
 
There is one problem with being refractory I'm med resistant to the drugs and also allergic to 6 drugs ; I see my neuro this Thursday and have a heart to heart with him. I had a nice seizure last evening.
 
How's it going with the Aptiom, Belinda? Are you still on that one, or just the Fycompa now?
 
They give tegatol o nuralga maybe that why head aches cleared up.You may had that fink and been unaware of it.
I felt so ill on tegratol but unable to explain to doc what exactly it was just general yuk proberly liverish I was on it just a month.
I don't know if lamical is having side effects unless we felt ill or went pink with blue spots how would we know.Lamical mood stablelizer how would you know unless someone knew what you like.Wish I knew if lamactcal was causing problems as great chunks of memory gone got Lewis spots in brain could it be e the meds or something else unless feel ill we not know.I got Lewis spots and it only in last year my memory more like amnesia how do we know if for years the meds been rotting our brains until to late.
My memory is a danger now not just absent thoughts.Is my depression and constant worrying about a side effect of cutting meds down.No sodding nuro doc at hospital to ask.It all a worry
 
My neuro decided against aptiom since it was a 3rd generation in Tegretol family
 
Me too! :)
One good thing about tegretol is it did stop my headaches completely.

My girl used to bang her head and kept touching her head as if she was in pain.. at that time she was on Tegretol. Also more seizures noted. What is told is that's it a reputable oldest drug for seizure management. yeah ..... blah blah..

When she changed to different meds no more head banging and looking like a zombie.
To this day no head banging, despite her diagnosis of Autism ( some kids with Autism do head bang )
 
Belinda,

I've been seeing an epileptologist at Emory for years. But, I may want to switch to seeing a neurologist in private practice which I believe is what you do. Would you recommend your neurologist and where exactly is he located?
 
I'm sorry about the seizure Belinda. :( it'll be interesting to hear what your dr has to say.

:hugs:
 
Belinda I wish you the best if you come off it. I've been on Neurontin since it first came out & I also wonder what it has done to my body. My DH reminds me I would not be here now if I had not taken it. It was/is the only med I was able to tolerate.
 
Belinda I wish you the best if you come off it. I've been on Neurontin since it first came out & I also wonder what it has done to my body. My DH reminds me I would not be here now if I had not taken it. It was/is the only med I was able to tolerate.
I am not controlled by Tegretol at all; I take two other drugs along with iti also take Topamax and Fycompa.
 
Back
Top Bottom