Posted by: Robin Stull ®
02/28/2005, 01:18:03
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Beth - SD came upon me around age 40, and I understand that the "typical" case involves women around 40 (of course this BB is testament to the fact that many many cases are not "typical.") However, when I heard that (about the "typical" case) I certainly thought about hormones playing a part. During the 2002 NSDA Symposium in Scottsdale there was a question put to the panel of doctors about hormones (the focus of the answer is more about pre-menopausal than menopausal, but interesting none the less.) Here's the "transcript" from the notes that were available: Why do more women that men get SD? What may be the impact of hormonal influences?
Panel estimates 4 to 1 overall (4 women to 1 man has SD.)
Maragos: Women's smaller organ may contribute.
Adler: Dystonia study found that menstrual cycle did effect. Estrogen plays big role is neurotransmission in brain. Menstrual cycle study, started at Mayo Scottsdale, was not able to be completed.
Maragos: Maybe cycle edema plays role. I do wish they would do more study about this. I wish you well, Robin (AB/So. Calif.)
Modified by Robin Stull at Mon, Feb 28, 2005, 01:36:13
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Posted by: Valerie ®
03/02/2005, 11:54:34
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Hi Beth,
I also wish there were more studies. I was 52 when SD finally consumed my voice. I do believe that the drug companies making Botox will never allow studies to take place because it's much easier to inject people then to study 'why'. Insurance companies win cases because there is no data to support 'why'.
I just hope after receiving Botox year after year, people don't end up with a problem bigger then they started with. I'll push for research and keeping whispering. Valerie
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Posted by: twinteacher ®
03/18/2005, 08:28:49
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I have an identical twin sister who has received botox injections every 3 months for the last 4 years. I have recently developed SD symptoms, and I am hesitant about doing the same treatments. Even though my family thinks I am crazy, I don't want to risk the longterm effects. I am pursuing a more non-invasive approach, even though it takes lots of time and patience. I am more determined to make it work, because of the criticsms, negativism, and pessimism that I encounter everyday. Hopefully, one day I can overcome this with hard work and a positive attitude.
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Posted by: Paula B. ®
03/19/2005, 23:34:14
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Hi,You said you have developed SD symptoms. You may not have anything except a cold, or a sore throat. It is the season. Not to be harsh, but in my opinion, maybe you should go to an ENT specialist, or your sister's Dr. and find out for sure. That way you can take one day at a time like the rest of us are doing. I had sounded like I had a sore throat for 8 years, and I was diagnosed with SD and given a Botox shot on the same day. I now am talking better, and even breathing better than I have been in 8 years. Getting shots to improve one's ability to talk isn't a negative thing. What risks are you talking about having to deal with in the longterm? Good Luck to you, In whatever you do, Paula (Chicago)
AD SD
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Posted by: Marilee ®
02/28/2005, 19:40:35
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My info may just confuse the issue, but I started with
symptoms of dystonia at age 64 - a full 13 yrs. after
my menopause. First was the neck jerking and eye troubles,
which were diagnosed as cervical dystonia and blephorospasms.A year later, at age 65, I started having oromandibular
and spasmodic dysphonia. Botox injections helps all this,
but I just wanted to point out my age difference, for
whatever it's worth. We are all interested in finding
a cause, so then perhaps closer to a cure!! I am now 68. Best wishes to you all! Marilee
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Posted by: Laurie ®
02/28/2005, 20:16:14
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I'll point out my age difference too: I'm 28. And then there are all the men with SD.Laurie
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Posted by: kybutterfly ®
03/01/2005, 16:41:09
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Stop everyone! I think there is a misunderstanding. I do not think that menopause can cause SD lol. Just thought it might possibly WORSEN during that time ok :)
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Posted by: Lynne Martinez ®
03/02/2005, 11:08:58
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Your post made perfect sense to me. Hormonal changes during childbirth, nursing, monthly cycles and menopause can be mildly-to-extremely stressful to a female body. Over the years on this BB (and in the patient/physician/specialist community), we've all acknowledged that stress makes SD worse, even though it does not cause it. One of the things most of us females go through in menopause (in our 40's and 50's) is trying to appear normal (as if we were still 35) when the situation is "far from." After all, none of us know exactly when it starts and it's episodic. We are usually trying to keep up our regular life, until we realize it's hit us like a ton of bricks. That in itself can take a toll, stress-wise. Sure - that level of stress could make SD worse. If "external stressors" (like having to talk on the phone, or make a presentation) can make our SD worse, "internal stressors" such as menopause can easily do the same thing when we're trying to do our regular job or life, and we don't want to have to admit things like mood swings or having to change our clothes three times in the morning on the way to work, due to severe hot flashes. (Not making this up - happened to me 6 years ago). The answer to your question (only speaking from experience) is that "YES" - it can worsen during that time. Operant word being "can," as opposed to "does." Depends on which female body is going through menopause, since each menopause case seems to vary just like each SD case. Feel free to write me on private e-mail for additional info. Hope this helps. --Lynne (AD-SD; RLN; PVFM; Northern California)
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Posted by: Robin Stull ®
03/02/2005, 02:42:17
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I'm sorry if the point of my reply was confusing. I do not think that menopause can cause SD. I only meant to point out that I have wondered about the role of hormones impacting SD, and that hormone influences have been considered by some medical-powers-that-be, and that as far as I know no study has been concluded. I wish you well, Robin (AB/So. Calif.)
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