Blepharospasm Bulletin Board

Drugs
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Posted by: Ann Doyle
11/27/2003, 17:12:40


I can't see my Botox DR. until Dec. 19. I had a myectomy in Sept. and haven't had shots since so I do not know what to expect. It worked wonderfully until Nov. 21. I was OK for about an hour and then both eyes were closed. It has been the same ever since. They are OK for an hour in the AM and sometimes for 1 hour at night.
I was off almost all drugs. Now nothing seems to work. Klolopin used to work. It doesn't. I have not had artane or Piracetam. Has anyone had success with either of these two drugs or any other drugs?
I can't get hold of my DR or even his nurse. I either get an answering machine that they will call back, they don', I can't even get hold of his nurse only the lady that makes appointments, I don't know what I would tell the nurse anyway or my GP, who lives here and I could get hold of but he is learning from me. God love him. He's a good listener and if I suggest a drug, he will look it up and give his opinion and tell me all about it. He has always prescribed what I asked for . He chooses the dosage and frequency. Ann Doyle



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Re: Drugs
Re: Drugs -- Ann Doyle Top of thread Archive
Posted by: Mary, upstate NY
11/28/2003, 12:11:58


Ann - Your experience sounds similar to mine. About 10-12 weeks after my limited myectomy, I was ready for Botox shots again. I didn't need as high a dose. but I still meeded them (still do). Before and after the surgery, I've been taking clonazepam (generic Klonopin), .5 mg 3X a day....doing OK. Mary



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Re: Drugs
Re: Re: Drugs -- Mary, upstate NY Top of thread Archive
Posted by: Barbara
11/28/2003, 17:53:56


I'm having real difficulty with my myectemy since it was done alsmost a year ago. I need shots in the lower face satrting at 8 weeks and my brows have sunk so low they are close to my eyes- no visible lids. I talked to Dr. Anderson and he said I need a brow lift or forehead lift. But he never responded when I asked about cost. I guess I was was one of the unlucky ones who's myectemy just isn't working right- so I will need to fly out a third time to Salt Lake. This didn'y happedn until 6 months aftyer the surgery. feeling a little low



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Re: Drugs
Re: Re: Drugs -- Barbara Top of thread Archive
Posted by: Ann Doyle
11/29/2003, 11:48:58


BARBARA Third Time??? Why did you have to go the second time? I have scar tissue and lumps on either side of my eye and I keep getting eye infections even though I keep drops in my eyes and goop at night with adhesive to hole them shut and prescription meds when they get reallly red. I didn[t mind while I could still see and now I can't and I wonder how that first Botox injection series will go . Will he give me enough? It's a different Dr . DEC 10 seems like so far away.
Ann Doyle



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Re: Drugs to Ann Doyle
Re: Re: Drugs -- Ann Doyle Top of thread Archive
Posted by: Barbara
11/29/2003, 16:30:25


I meant second time not third time. Dr A. always called me back when I had a question but when I saw him a month ago it was too soon and he didn't see the full effect of what was going on we basically discussed doing under my eyes because of the intense lower spasms I', mow having. So he never saw the eyebrow situation. A few weeks later I sent him questions and pictures, never called me back and just e-mailed me that I would need cosmetic surgery. So sorry about your infections. No one should take this surgery lightly. This is a major big deal. Thanks always for your support.



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Re: Drugs to Ann Doyle
Re: Re: Drugs to Ann Doyle -- Barbara Top of thread Archive
Posted by: Ann Doyle
11/30/2003, 16:46:58


Barbara, could you send me his email address please. I did write him one brief note by snail mail and he said glad to hearfrom me and please write again. I feel like he wants the input but doesn't have time for answers but that is just me jumping to conclusions . Anyway, I should write hime again, one way or the other. Ann Doyle
In first letter I said Botox on Dec. 10 and i meant 19. Ann


Modified by Ann Doyle at Sun, Nov 30, 2003, 16:48:58

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Re: Drugs to Ann Doyle/other temp alternatives
Re: Re: Drugs to Ann Doyle -- Barbara Top of thread Archive
Posted by: Kathy in Atlanta
12/03/2003, 07:58:58


Oh man, do i feel for you both! I was getting excited for you ann and now?? How about if you could wear your hair back in a ponytail or tight headbad OR what about the surgical tape trick ? to keep your eyes open for awhile? would this hurt at all over the scar tissue?



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Re: Drugs to Ann Doyle/other temp alternatives
Re: Re: Drugs to Ann Doyle/other temp alternatives -- Kathy in Atlanta Top of thread Archive
Posted by: Ann Doyle
12/04/2003, 13:52:14


Saw my opthomologist here. He said I needed a specialist. I was beyond anyone here. He is in with 5 others. He made an appointment for me the next day in Louisvile with an Optho-surgeon. Ne said my corneasa are becoming damaged or deterriorating. I am now wearing swim glasses to keep the moisture in which means I can't wear my regular glasses to see. Have them off for a few minutes to keep in contact , ask for prayers and keep my sanity. I also have pads between my eyes and the glasses to keep light out and medicine in. Just when I think things can't get worse, they do. But there is nothing that God can't handle.--if I let Him. I'm on a bit of a pity party but it won't last long. In fact it is on it's om all ready on the decrease. I have so many wonderful children who care for me. I am truly blessed.
I think I was at my lowest when I lashed out about Home schooling. I am so ashamed of that. Ann Doyle



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Re: Drugs to Ann Doyle/other temp alternatives
Re: Re: Drugs to Ann Doyle/other temp alternatives -- Ann Doyle Top of thread Archive
Posted by: Kathy in Atlanta
12/05/2003, 10:42:05


we are all thinking and praying for you. I didn't read that part. i was more concerned about keeeping your eyes open and now you have to worry about keeping them closed!



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Re: Drugs
Re: Re: Drugs -- Mary, upstate NY Top of thread Archive
Posted by: Ann Doyle
11/29/2003, 11:40:08


MARY, I am taking `1mg. klonopin 4 times a day and I am not doing OK. How long after your myectomy did you have to wait for Botox? Please answer Ann Doyle


Modified by Ann Doyle at Sat, Nov 29, 2003, 11:41:02

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Re: Drugs
Re: Re: Drugs -- Ann Doyle Top of thread Archive
Posted by: Mary, upstate NY
11/29/2003, 19:20:07


Ann, I had the surgery almost five years ago. I'm not positive, but I think I needed Botox about 2 months after, but not as much as I had before the surgery. I currently receive about 25 units around each eye, exactly every 8 weeks. Mary



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Re: Drugs
Re: Re: Drugs -- Mary, upstate NY Top of thread Archive
Posted by: Gayle
12/01/2003, 16:46:28


Mary, why is Botox required (or used) after the surgery? What is the purpose of the surgery?

Gayle in GA




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Re: Drugs
Re: Re: Drugs -- Gayle Top of thread Archive
Posted by: Mary, upstate NY
12/01/2003, 21:11:33


Hi Gayle....I had the same question! The answer seems to be, No. 1..a very few people are "cured", at least for a while, with the surgery. Not me. #2..My eyes never "clamped", as much as just wouldn't stay open, though I received Botox which worked for only about 5 weeks at a time, not well, and got up to about 90 units total. After the surgery, I need less Botox (50 units) receive it every 8 weeks, and it's OK. One good thing is that the surgery (cosmetically) took the excess baggage out of my eyelids! Although I had to fly 2,000 miles and spend most of a week in Salt Lake City, I would do it again in a minute! It did indeed help me. It took visits to 10 doctors (including two shrinks, of course) and eight years to find out what the problem was. I would have done almost enything by that time. I started having problems about 1985, and had the surgery about 1999. So I would say that anyone would be pleased with the surgery (if recommended by your dr.) and expect to be better, but not cured. Mary



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Re: Drugs and Botox not working, for Jean and Anne
Re: Drugs -- Ann Doyle Top of thread Archive
Posted by: Debbie
11/28/2003, 18:01:45


Dear Jean and Anne,

My heart goes out to both of you. I feel terrible about what you are undergoing. I have not suffered from BEB for long enough to be able to give either of you any sound advice (it's only been since this past summer, and I've only had the Botox injections once, thus far). I hope some of the "pros" will answer you.

However, I did want both of you to know that I was touched by your messages, am thinking of you and hope you are feeling better shortly!

Best of luck,
Debbie




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Re: Drugs and Botox not working, for Jean and Anne
Re: Re: Drugs and Botox not working, for Jean and Anne -- Debbie Top of thread Archive
Posted by: Ann Doyle
11/29/2003, 12:06:11


Thank you Debbie. That means a lot. Especially coming from another Bleph sufferer and I do feel like a sufferer right now. Usually I am not this low.
I have a daughter in law who just moved here from the Ukraine a month ago and doesn't know anyone ore where to shop or go. She needs to get out of the house. She is home schooling the kids since the 3 year old doesn't speak English very well but she understands it. The older one is 5. I would like to take them all to the park and then drop the kids off so we could eat lunch or go shopping or do girl things but I just barely make it out of bed to the couch and back to bed. Her husband is looking for a job in the AM and for a house in the PM. He is my son and not a slouch. He would be glad to take care of the girls and does frequently.
I have a daughter here who would love to do the same thing but she works athe hospital , has 2 kids in school and is the foster parent for the past 6 months of a 1 year old and 3 year old and it lo0ks like she will have them for a long time because the mom will not stay off drugs and there is no father in the picture. The girls are really cute but very very active and physically they make you very tired trying to keep up with them. They are never still and always into stuff.
I feel so sorry for my daughter in law, IRA, and quilty. I just know how much nicer her life could be if I could see. Ann Doyle



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Re: Drugs
Re: Drugs -- Ann Doyle Top of thread Archive
Posted by: rose1946
11/29/2003, 10:20:59


Hi to all of you who posted messages regarding unsuccessful limited myectomy. I had a limited myectomy in October 1997 and had five WONDERFUL years with no medications or botox needed. In October 2002 my spasms and eyelids closing started returning gradually and in August I had botox. It did not seem to help my condition so I was referred to a neurologist. He had me on 10MG of amitriptylene and 150MG of triptilene twice a day. After 5 weeks I returned to seem him. I had been keeping a journal and the results were about 50/50. He took me off the amitriptylene and doubled the dosage of triptilene also had me send away prescriptions for artane and sinemet. I have not received these prescriptions yet. Tuesday, Wednesday and Thursday of this week my eyes were perfect and thought success at last, but yesterday afternoon they closed again and stayed that way for the remainder of the day. This morning when I got up my eyes were fine for about 2 hours and now as I sitting here typing I have little slits for openings. My neurologist gave me the name of another neurologist in Boston who specializes in movement disorders and I am going to contact her this week to see if I can get an appointment. I guess we all have good and bad days. Keep plugging away and look for someone or some meds that can give you relief. Be thankful for the good days that you have. This bulletin board is a great help and a great source of information. Thanks to all of you.



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Re: Drugs
Re: Drugs -- Ann Doyle Top of thread Archive
Posted by: June in Toronto
11/29/2003, 16:11:38


Dear Ann and Barbara, like Debbie, I feel so very badly that you having such difficulties. Not having had a myectomy of any kind I'm not able to give you any advice. My prayers are with you though for much better days ahead.

June in Toronto who is so counting her blessings after hearing what other blephs are going through.




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Re: Drugs
Re: Drugs -- Ann Doyle Top of thread Archive
Posted by: Steve-In-Tennessee
12/02/2003, 12:04:58


ANN, I WENT 3 MONTHS WITHOUT SHOTS OR MEDS IN FEB 03 I HAD TO START BACK ON ARTANE IT HELPED ME. NOW I TAKE ARTANE CLONOPIN AND XENAZINE. SO FAR I HAVE NOT STARTED BACK ON BOTOX. ALL OF THIS NOW IS FOR MEIGE'S SYNDROME MOSTLY/ I HOPE THAT YOU FIND SOMETHING. STEVE

P.S. THE XENAZINE I HAVE TO GET FROM CAMBRIDGE LABS IN THE UK, NOT APPROVED YET BY FDA. 5 PILLS A DAY COST APPROX. 240.00 PER MONTH.




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For Ann Doyle, re your message about schools
Re: Original message -- Top of thread Archive
Posted by: Debbie
12/02/2003, 16:53:07


Dear Ann,
I must confess that I was floored by your message! I was merely suggesting a public school experience for your son's kids because it sounded like your daughter in law needed to get out of the house! Schools are wonderful for parents, not just for kids, you know!

I didn't expect your diatribe about home schooling, and am sorry if you misinterpreted my previous message. Each to his own!

Hope you're feeling better soon!

Peace,
Debbie, who is still in favor of quality public schooling! :-)




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Re: For Ann Doyle, re your message about schools
Re: For Ann Doyle, re your message about schools -- Debbie Top of thread Archive
Posted by: Ann Doyle
12/03/2003, 06:35:42


I would like to apologize. I was and am in extreme pain and was just told I may be going blind and I lashed out at you. Please forgive me. I was way out of line...Very humbly, Ann Doyle with head down, tears in eyes/



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Re: For Ann Doyle, re your message about schools
Re: Re: For Ann Doyle, re your message about schools -- Ann Doyle Top of thread Archive
Posted by: Ann Doyle
12/03/2003, 07:00:38


Debboe. O de;eted tje ,essage frp, tje bb/ O kist wosj O cpi;d de;te ot frp, upir ,omd amd ,ome/ Ann Doyle



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