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Old 04-18-2013, 11:05 PM   #1
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neurologist won't put me back on tegretol

I have been on tegretol 18yrs neurologist told me to come off it because it wasn't helping petite mal ,whilst I was comming down on it I started with really bad insomnia not sleeping at all for 2- 3 days ended up on sleeping tablets, started having panic attacks n anxiety ended up on beta blockers, started having grandmal in my sleep.So I started back on tegretol myself from some that I already had, my docter couldn't prescribe me any without hearing to do so from the neurologist so he wrote to the neurologist about my problems and to try and get an early appointment to see him, All I got was a letter saying I couldn't see him any earlier than my July appointment and that he would not RULE OUT MY WISHES for tegretoll but I must liaise through epilepsy nurse so I did and guess what he said NO I can't go back on tegretol .
What can I do now I know how it affected me and do not want to go through that again , since I've gone back on them I'm back to my normal self . But I will run out in 2wks and you are not supposed to just stop takeing them. I don't see neurologist in person untill July.

 
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Old 04-19-2013, 07:45 PM   #2
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Re: neurologist won't put me back on tegretol

Quote:
Originally Posted by mercedes125 View Post
I have been on tegretol 18yrs neurologist told me to come off it because it wasn't helping petite mal ,whilst I was comming down on it I started with really bad insomnia not sleeping at all for 2- 3 days ended up on sleeping tablets, started having panic attacks n anxiety ended up on beta blockers, started having grandmal in my sleep.So I started back on tegretol myself from some that I already had, my docter couldn't prescribe me any without hearing to do so from the neurologist so he wrote to the neurologist about my problems and to try and get an early appointment to see him, All I got was a letter saying I couldn't see him any earlier than my July appointment and that he would not RULE OUT MY WISHES for tegretoll but I must liaise through epilepsy nurse so I did and guess what he said NO I can't go back on tegretol .
What can I do now I know how it affected me and do not want to go through that again , since I've gone back on them I'm back to my normal self . But I will run out in 2wks and you are not supposed to just stop takeing them. I don't see neurologist in person untill July.
What dosage are you currently on? You would have to gradually lower it at points over the two weeks ( if morning and night doses must be alternated as shown)
I.e. start 100mg morn 100mg nite
Mon-wed 50mg morn 100mg nite
Thurs-sun 50mg morn 50mg nite
Mon-wed no morn 50mg nite
Thurs-sun no morn no nite

 
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Old 04-21-2013, 02:17 PM   #3
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danabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB Userdanabarb HB User
Re: neurologist won't put me back on tegretol

Why is it you cannot see a neurologist until July-is it your insurance? If I were you, I would call the Epilepsy Society nearest you and to speak to someone who can help you. If not luck, try the main branch. Does your dr. have a reason for not refilling your prescription? Is your blood work off or what?

 
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Old 04-23-2013, 04:16 AM   #4
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Re: neurologist won't put me back on tegretol

If tegretol is not working for you - that's a good reason. Tegretol is also known to cause problems with the bones - I have a bone density test every 2 years.
Be careful with the drugs - talk with the Dr when you see him/her.
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