amitriptyline and trileptal
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Posted by: rose 1946 ® 11/01/2003, 09:00:05 Author Profile Mail author

Hi everybody, I had totally lost hope the last time I posted to the bulletin board because I have become immune to Botox and my eyelids were closing more and more often. I went to a neurologist on October 20 and he told me to cancel my next appointment for November for botox and he put me on 10MG of amitriptyline and 150MG of trileptal. I take one of each before bedtime. I have been on these meds since October 21 and am almost afraid to say that my eyelids have been doing wonderful for the most part. Only a couple of incidents of eyelids drooping. It was originally my understanding that it takes 5 to 6 weeks for the meds to fully get into your system. Hope I'm not getting false hope but so far I am very pleased with the results. Of course, I'm not working right now and driving very little. Bright lights are still a grave problem. Sometimes if I just go to the supermarket and am in and out in 30 minutes my eyelids start to droop. Will keep experimenting with this meds and keep you all posted as to how things go with these meds. Good luck to all of you.

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Re: amitriptyline and trileptal
Re: amitriptyline and trileptal -- rose 1946		Top of Thread	Archive

Posted by: Junebug ® 11/01/2003, 17:57:03 Author Profile Mail author

I am so happy for you. What is trileptal? At least what kind of drug is it? I have never heard of it. I will do a search on it but I appreciate your input. I hope your success continues. Hugs.

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Re: amitriptyline and trileptal
Re: Re: amitriptyline and trileptal -- Junebug		Top of Thread	Archive

Posted by: Delaine Inman in TN ® 11/02/2003, 22:24:30 Author Profile Mail author

Trileptal is an antiseizure medication.(Klonopin is also antiseizure med and works for me and many others.) I was taking 10mg to 20mg of amitriptyline for fibromyalgia for about 9 years when I was diagnosed with BEB. Ironically it is listed as a drug that can cause tremors and BEB, but is also helpful for others in decreasing symptoms. I stopped taking it just in case it had been part of the participating factor in my BEB. It does cause increased dryness of eyes and muscus membranes.

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Re: amitriptyline and trileptal
Re: amitriptyline and trileptal -- rose 1946		Top of Thread	Archive

Posted by: June in Toronto ® 11/02/2003, 06:46:53 Author Profile Mail author

Hi Rose, enjoy the respite for as long as it lasts - I hope forever! Best wishes....June in Toronto

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Re: amitriptyline and trileptal
Re: amitriptyline and trileptal -- rose 1946		Top of Thread	Archive

Posted by: rose 1946 ® 11/04/2003, 09:58:30 Author Profile Mail author

Hi everyone, Well I said I'd keep you posted and here is the bad news. I last posted on November 1 about the great relief I was getting from the new meds. Well so much for that. Yesterday by 8:30 a.m. my eyes had closed and remained that day for the remainder of the day. I take my meds before I go to bed and that had been working well for me for the most part. Yesterday I went to an appointment with my husband at a doctor's office (florescent lighting) and within 10 minutes of being there my eyelids began to close and remained that way for the rest of the day. When I got home at 11:30 a.m. I took 10MG of amitriptyline and 150MG of trileptal (these are the meds I take before bed). I laid down for about an hour and there was still no improvement. I fell asleep on the couch at 6:30 that evening and my husband woke me up at 10:00 to go to bed. Just another day in the life of a fellow BEB. It seems that I am fine for the most part as long as I'm not out in the real world. I can even be on my computer for hours without any problems if it is during the day and am not using artificial light to work by. Still trying to figure out this mystery. Keep daily journal of dosage of meds and affects they have on me. Going back to neurologist November 29 to see how we should proceed. Good luck to all of you. Saw the post about the chat room today and hope to be around to get in on it.

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Re: amitriptyline and trileptal
Re: Re: amitriptyline and trileptal -- rose 1946		Top of Thread	Archive

Posted by: June in Toronto ® 11/04/2003, 11:06:43 Author Profile Mail author

Hi Rose, so sorry the meds aren't working so well for you now - this disease isn't much fun it? I think a lot us of feel that our beb is more controlled at home and that going out is so difficult - but we have to keep trying. I wish you luck with the chat room - it closes my eyes up tight - all that flashing as everyone `talks'. Cheers June in Toronto

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Re: amitriptyline and trileptal
Re: Re: amitriptyline and trileptal -- rose 1946		Top of Thread	Archive

Posted by: Barbara ® 11/04/2003, 15:18:42 Author Profile Mail author

Please Rose look into surgery. It has its risks but it also be a life saver.

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Re: amitriptyline and trileptal
Re: Re: amitriptyline and trileptal -- Barbara		Top of Thread	Archive

Posted by: rose 1946 ® 11/05/2003, 11:23:59 Author Profile Mail author

Hi Barbara, I had a limited myectomy in the fall of 1997 and it lasted until fall 2002. Had botox injections in August and am now seeing neurologist for meds. He feels I am immune to botox now. Going to see if it is possible to have surgery again. Another bad day today. Got up fine, so I drove myself to hairdresser. After being there 15 minutes eyelids were drooping. Got home at 11:30 and took meds again and will wait to see if eyelids open. Last time they stayed closed all day even though I took the meds. Hanging in there but am definitely going to seek social security disability. I have all the forms and meds from all but one of my doctors. Will be calling social security shortly to schedule appointment. No way can I work. I'm going to be 57 next month so if I can get disability for a few years why not try. Still trying to keep my spirits up and so should all of you out there. On my good days I try to make the best of them cause I never know when or what will cause my eyelids to close. I know you all have the same problems and it's great to have this bulletin board to air those problems on and get info from fellow BEBs.

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Re: amitriptyline and trileptal
Re: amitriptyline and trileptal -- rose 1946		Top of Thread	Archive

Posted by: Janetsh ® 11/05/2003, 02:50:46 Author Profile Mail author

I thought Amytriptiline was an antidepressant. My GP tried me on Sertraline but when I said I kept waking up he said try Amytriptiline as its a stronger sedative. I was sleeping ok before he gave me anything I'm afraid I chucked it in the bin after a couple of days.

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Re: amitriptyline and trileptal
Re: Re: amitriptyline and trileptal -- Janetsh		Top of Thread	Archive

Posted by: Delaine Inman in TN ® 11/11/2003, 17:42:00 Author Profile Mail author

Amitriptyline (Elavil) is a very old antidepressant, but has multiple usagaes. For depression it was taken in larger doses. Now it is more often given in smaller dosages for Fibromyalgia and peripheral neuropathy which is caused by diabetes or poor circulation from some other cause. It lowers the pain receptors for pain, causes sleep that will take you into a deeper level where muscles are repaired and decreases pain and inability to fall back to sleep if you wake during the night. It is often ordered for dystonia and is helpful for many. Modified by Delaine Inman in TN at Sat, Nov 15, 2003, 10:31:30

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