neurologist won't put me back on tegretol after 18yrs on it

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mercedes125

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Was on tegretol 18yrs neurol8gist told me to stop taking it as it wasn't helping petite mal,Whilst I was comming down on it I started with insomnia not sleeping for 2-3 night at all I ended up on sleeping tablets , started with panic attacks, anxiety ended up on beta blockers.Started having grand mal in my sleep. So I started back on them myself because my docter couldn't prescribe me without the neurologist saying so, so the softer wrote a letter to the neurologist stating the problems I were having whilst comming off tegretolll andto see if I could have an earlier appointment than July. I got a letter saying I couldn't have an early appointment BUT HE WOULD NOT RULE OUT MY WISHES and I must liaise through the epilepsy nurse so I did and the neurologist told the epilepsy nurse NO I can't to back on there'll.
What can I do now I'm back on them myself and feeling more myself again and do not want to go through what I went through again, the neurologist does not understand how it affected me,And I will also run out in 2wks .I don't see neurologist in person untill July .I'm happy ti just be on 500mg a day .
 
I believe you were having withdrawls from the Tegretol. I've been on Tegretol to control grand mal seizures since I was 18. I know not every AED stops all seizures. Is your neurologist aware of the seizures your having at night? IMO. I would find a new doctor that understands and will listen to you. Good Luck
 
pita300 said:
I believe you were having withdrawls from the Tegretol. I've been on Tegretol to control grand mal seizures since I was 18. I know not every AED stops all seizures. Is your neurologist aware of the seizures your having at night? IMO. I would find a new doctor that understands and will listen to you. Good Luck
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I know I think I was I got in a right state, and now I'm back on them I'm ok now but I havnt got enough to ween off them so I'm dreading it.
The epilepsy nurse is aware of the seizure at night but I have not seen neurologist since, I see him in July
 
Thats a difficult situation and finding a new doctor may not get you in any eariler. Well either the doctor or the nurse needs to know that you are back on the Tegretol with not enough to ween off. We all know what happens when you just stop taking it abruptly At least I know what will happen to me. I don't know your whole situation. Are you rampping up on any other medication while you are comming off the Tegretol?
 
pita300 said:
Thats a difficult situation and finding a new doctor may not get you in any eariler. Well either the doctor or the nurse needs to know that you are back on the Tegretol with not enough to ween off. We all know what happens when you just stop taking it abruptly At least I know what will happen to me. I don't know your whole situation. Are you rampping up on any other medication while you are comming off the Tegretol?
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I know that's the thing if I asked to see another docter I might have to wait another 6mths.
I've been given topomax to start takeing which I'm not too kean about after reading a lot of bad reviews about it.
Not only that I've been happy on tegretol.
 
They all have bad side effects. I'm currently on Tegretol XR 4000 mg of Keppra and rampping up on Lomotrigine I'm at 250mg working up to 300. The meds affects every differently. I wasn't keen on taking Keppra I'm not having alot of the side effects that most people on it have had. I know its not easy but I know the Tegretol keeps me from having a grand mal but it does nothing for the partial seizures I'm having. So you should at least try it and its not working then you start working with the nurse and doctor about finding other alternatives. I'm Sorry thats probably not the answer your looking for if that what your doctor wants you to do he is probably not going to change his mind until he knows its not working.
 
Hi mercedes,
Welcome to CWE.
Did your neurologist give you a reason why he chose to take you of Tegretol & replace it with Topamax?
As PITA has said the way you were feeling after coming of the Tegretol could be withdrawl symptoms & your body adjusting to the new meds/dosages.

I am not sure how the neurologist has been weaning you of the Tegretol (eg - has he been getting you to reduce the dosage slowly or fast?)

I have been on Tegretol since 2002 & have been on a 2nd med with Tegretol since 2004.
I am currently on Tegretol & Keppra but in March 2012 I was able to slowly come of one of the meds as I hadn't had a seizure for 12 months. My neurologist & I discussed which med I would like to come of & we decided to wean me of the Tegrteol because it is an older med & there are more long term side effects then Keppra.

When my neurologist & I 1st started reducing the Tegretol I was on 400mg (AM&PM) & we reduced that to 200mg (AM&PM). I stayed on that dose for 12 months. I saw my neurologist in March this year & we reduced the Tegretol some more, he took me of the morning dose of Tegretol. I am now just on the night dosage of Tegretol with my Keppra (1000mg Keppra AM & PM) but I am due to come of the night dosage of Tegretol at the end of this month.

I always allow myself 2 weeks for any side effects from med changes, I noticed when coming of the Tegretol I had very minimal side effects which only lasted a couple of days.

Good luck with the Topamax, I hope you get some answers from your neurologist.
 
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