Just talked to my doctor
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Posted by: barbara ® 08/01/2003, 18:21:37 Author Profile Mail author

I just talked to my doctor and he said that my sapsms in the upper larynx have nothing to do with his botox shots. that the dystonia may be spreading down. All this has happedened since thee neurotin. Does anyone involvement or shots in the upper larynx. I know that I am new to the board but all these are happening to me so fast within the last few weeks that I am really scared. I don't know how much more I can take. I have now taken two drugs that have worsened my dystonia.

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Re: Just talked to my doctor
Re: Just talked to my doctor -- barbara		Top of Thread	Archive

Posted by: essie ® 08/01/2003, 20:49:41 Author Profile Mail author

Hi Barbara I too experince spasams of the voice box (it was my first symptom and the eyes followed 3 months later). I understand how you must be feeling ,the spasams are terrifying and it feels like it is lasting for ever. No one has ever choked to death during a larcospasam but I suppose that doesnt help while its actually happening. During a spasam try very hard not to gasp for air (it makes it worse) instead try to breath very slowly and gently through the nose (takes practice and I have still been known to run around like a headless chicken during a bad one). If family are about arrange with them to give you a quick sharp blow between the shoulder blades when a spasam comes on, it can break the spasam. I am white as a ghost after each one, they still scare the crap out of me and its been happening for over a year, I suppose you never really get use to the sensation of choking to death. Practice the gentle slow nose breathing a few times and next time one comes on give it a try. Remember YOU CANNOT CHOKE TO DEATH. Hope this has helped in some way cheers essie

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Re: Just talked to my doctor essie
Re: Re: Just talked to my doctor -- essie		Top of Thread	Archive

Posted by: barbara ® 08/02/2003, 08:43:16 Author Profile Mail author

Have you ever had botox for your spasms. Mine are not that bad I just feeling a tightening around the larnynx making hard to swallow.

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Re: Just talked to my doctor essie
Re: Re: Just talked to my doctor essie -- barbara		Top of Thread	Archive

Posted by: Ann Doyle ® 08/02/2003, 09:30:23 Author Profile Mail author

Ihave trouble swallowing too. My DR. gives me Botox on either side.of the throat on the outside. . My biggest fear was that I wouldn't be able to breath. He said that wouldn't happen. It certainly is frustrating and aggravating. Ann Doyle I

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Re: Just talked to my doctor essie
Re: Re: Just talked to my doctor -- essie		Top of Thread	Archive

Posted by: barbara ® 08/02/2003, 08:43:57 Author Profile Mail author

Have you ever had botox for your spasms. Mine are not that bad I just feeling a tightening around the larnynx making hard to swallow.

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Re: Just talked to my doctor
Re: Just talked to my doctor -- barbara		Top of Thread	Archive

Posted by: Delaine Inman in TN ® 08/02/2003, 08:15:50 Author Profile Mail author

I've gotten 4 emails back with not able to deliver. Is your inbox full? Essie gave you a very good response. Beliefs in our docs and meds/treatment is very important. What works for one may not work or harm another. I would never take something I thought was making me worse. Don't stop anything abruptly......wean it off. The mind and body work together and the reason anything works is 85% belief that it will, belief in the med and belief in the one who gives it to you....it is called the placebo effect and is a REAL not imagined physical and chemical response to everything we take and has been proven by scientific research. We have to empower ourselves to be in charge of our treatment and not feel powerless to make changes. It has paid off for me and for many others. Take control by trying some of the things Essie said and get off the Neurontin before things get even worse. Change doctors if possible and find someone who will take your fears and beliefs seriously.

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Re: Just talked to my doctor
Re: Just talked to my doctor -- barbara		Top of Thread	Archive

Posted by: Gayle Register ® 08/07/2003, 13:14:20 Author Profile Mail author

You say that the drugs have worsened the dystonia. Did your doctor verify this? Does he say that if you stop taking these drugs that the dystonia will go away? I am taking the same drug, neurotin. I'll ask my doctor on the next visit. I too have the spasms of the larynx and both sides of my neck. Most of the time I am unable to speak a complete sentence. My words are broken. I get botox in the sides of my neck and that helps (until they wear off). I am scheduled Aug. 20 for shots to the vocal cords' muscles. This will be my first time. Will post results. What is unusual, I have found that if I get emotionally upset or angry, my voice becomes normal. I guess it all in the brain setup, I don't know but I intend to ask doctor. Best of luck and love to you as we all know what you are going through but there is hope. Gayle in GA

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Re: Just talked to my doctor
Re: Just talked to my doctor -- barbara		Top of Thread	Archive

Posted by: Joyce in NC ® 08/07/2003, 16:50:12 Author Profile Mail author

I am not sure what you mean by "thee neurotin". I am taking Neurontin and it helps me. I was taking 3 300mg of Neurontin and by the afternoon my eyes would open but it took all day for it to take effect. I had my Botox yesterday and at first it did not seem like it was going to work as good as it did last time but he increased my Neurontin to 600mg 3 times a day and it realy helps to keep my eyes open. Today was my first day trying the 600mg and I was surprised that it did not make me as sleepy as I thought it would. I did take a short nap but I do that everyday just to rest my eyes. Everyone is different and different medication help some and the same medication may not help someone else. I take Zoloft, Klonopin, and the Neurontin, plus different vitamins and minerals. When the Botox stops working and my eyes start squeezing shut, I have terrible headaches. But I keep on trying to do my normal everyday duties even when my eyes are clamped shut. I have bruises all over my legs and arms where I have bumped into things with sharp edges. We have basement steps and I can't see the bottom step so I have fell down the last two steps. I don't do that often but I told my housband to paint a white line across the edge of those two steps so I can see them. Joyce in North Carolina who is thankful for each day my eyes stay open. By the way - today is my 49th wedding anniversary. We are going to "Out Back" Saturday to celebrate.

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Re: Happy 49th Anniversary
Re: Re: Just talked to my doctor -- Joyce in NC		Top of Thread	Archive

Posted by: June in Toronto ® 08/08/2003, 08:09:45 Author Profile Mail author

Congratulations Joyce, enjoy the celebrations. June in Toronto

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Re: to Joyce
Re: Re: Just talked to my doctor -- Joyce in NC		Top of Thread	Archive

Posted by: rita ® 08/08/2003, 11:08:19 Author Profile Mail author

Hi Joyce Have a great Happy Anniversary dinner...49 years is a long time. Good going...and I hope your eyes get better..Rita In Washington State..

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Re: Just talked to my doctor
Re: Just talked to my doctor -- barbara		Top of Thread	Archive

Posted by: Steve-In-Tennessee ® 08/08/2003, 11:51:48 Author Profile Mail author

IT MAY BE A LONG SHOT BUT ASK YOUR DOCTOR TO CHECK OUT A MED CALLED XENAZING "TETRABENAZINE" IT IS ONLY AVAILABLE FROM THE UK, NOT CHEAP AT APPROX 300.00 PER MONTH, IT IS NOT FDA APPROVED HERE, BUT THE UK HAS USED THIS DRUG FOR YEARS I HAVE MEIGE'S SYNDROME AND IT SEEMS TO HELP ME A BIT. STEVE

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Re: Just talked to my doctor attn: moderator
Re: Re: Just talked to my doctor -- Steve-In-Tennessee		Top of Thread	Archive

Posted by: barbara ® 08/10/2003, 10:11:21 Author Profile Mail author

Steve. Many years ago I used Tetrabenazine foir many years ( when it was $60) a prescription. It lost effectiveness after a while and I stopped talking it. Probably because of the cost What is xenazing? The moderator had mentioned a drug on the markett that is similar to Tetra. but I can't remember its name. Maybe she can respond to this and tell me the name and how similar the drug is and is it being used as a substituiofor tetrabenazine. Thanks Steve.

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