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Posted by: kokapelli ® 09/19/2008, 20:31:21 |
Hey gang. I haven't been officially Dx'd yet but I'm going to be soon (AD/SD). I read the sentence "early one morning..." and sounded bad the whole way through, then read the "he saw half a shape...." sentence 100% perfectly, so it can't be MTD. Anyway, the good news is that I am a pharmacist and so I can at least bring a decent measure of drug knowledge to this board.
I've picked up a few great tips from here already. Delsym- going to pick up a bottle on way home. God I hope it works. For anyone out there who hasn't tried it I'd say go ahead and give it a shot- DMX in normal amounts is safe and non-addictive. I saw posts about anti-depressants and anti-anxiety meds. I'll just throw this tip out for anyone who might care...most anti-anxiety meds can be addictive and/or cause tolerance requiring higher doses over time. There's one quirky anxiety med out there that is FDA approved for GAD and is totally non-addictive....the brand name is Buspar. I am going to try this med and I can report back any results here for those interested (I have the med at home already, but haven't taken it in months since I only used it to help quit my tobacco addiction). Anyway while I'm not necessarily happy to be "part of the team" (lol) it's nice to know there's a place like this for SD. |
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Posted by: Laurie ® 09/19/2008, 22:16:44 |
Hi, there, Welcome to the NSDA bulletin board. Hopefully you will obtain an accurate diagnosis shortly. Just a quick note that if you google buspar and dystonia, you'll see that it can aggravate dystonia, cause involuntary movements, pseudo-parkinsonism, etc. So I might be careful with that one! (From one site: "Extrapyramidal Symptoms: Since buspirone can bind to central dopaminergic receptors, the possibility of acute and chronic changes in dopamine mediated neurological function (e.g., dystonia, pseudo-parkinsonism, akathisia and tardive dyskinesia) should be considered"). Unless taking a medication for severe anxiety and/or depression (unrelated to SD), I'd personally be wary of any of those medications as you could end up with worse dystonia-type problems or a more severe case of SD in the end. DXM has been discussed on and off and while certain individuals swear by it (though many of these folks are also using Botox so I can't say I buy their testimonials!), studies have shown it is not effective in treating SD. Well, again, welcome to the BB. Can't say I was happy to join it 8 years ago either, but when you have SD, knowing others w/ the condition can make it a bit easier. Laurie |
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Posted by: kokapelli ® 09/20/2008, 04:13:25 |
Thanks. You do bring up a good point about Buspar and the possible effects. As for Buspar itself, I've been a pharmacist long enough to say with confidence that it's relatively harmless as far as giving it a trial shot at helping out with our voices. I put together that since SD has many unknown factors, added to the the fact that some of these types of meds works for some people...that led me to try it. Buspar is the only anti-anxiety med that experts KNOW works for anxiety...but they are not sure of the mechanism of action (unlike something like Ativan which is a benzo and they know works thru GABA receptors..etc etc), I'm trying to see if some of these "unknowns" from each side could possible result in a positive effect. Worth a shot. To get a bit technical, I'm wondering how much of a factor Dopamine has to play in all of this. That dang chemical has so many different effects on us depending on where in the body you're talking about. For ex. Dopamine in different parts of the brain can cause either stimulatory or inhibitory effects, and there's even Dopamine receptors in our GI tract that serve a completely function. Dopamine plays a part in the mechanism of puking even. Anyone that's taken Phenergan to stop nasuea has taken a med to block Dopamine in this part of the process. This all makes me wonder if a drug like Wellbutrin (same as Zyban to stop smoking) could be helpful. Dextromethorphan's effects are not a far cry from the effects of Zyban/Wellbutrin as far as Dopamine receptors are concerned. I'm not talking out my butt here (sometimes I do, but not when it's a serious topic lol), one of the side effects of too much dopamine from some related meds is seizure, which is not unlike what happens to us basically when we talk and our vocal muscles go ape-crap on us. The only X-factor I haven't seen anyone mention yet is the use of Rx muscle relaxers. If Botox is a muscle paralyzer, then I've wondered to myself why wouldn't something similar yet less severe like a muscle relaxer work (Flexeril, Soma...etc). Has anyone tried these meds? If yes, can you elaborate on the pros and cons. |
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Posted by: Catherine1011 ® 09/20/2008, 07:51:50 |
Hi, and welcome to the board! I was on flexeril for back problems but didn't notice it helping my voice. I couldn't stay on it for long because of how tired it made me. I think that's the problem with those drugs. I also tried Artane but it nearly knocked me on my butt. One little pill and I was close to passing out several times. I've decided not to try them anymore. |
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Posted by: Sumaya ® 09/20/2008, 14:06:17 |
Yeah, the passing out feeling and being so tired. I had the same thing (other drugs though) I get tired enough as it is so who wants that as a bonus? |
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Posted by: Sumaya ® 09/20/2008, 14:04:22 |
Nice to have an expert on board:) I've been prescribed several drugs including anti depressives but from what I read it could do more damage then benefit. Btw...I'm not depressed or psychotic but who am I huh? I have generalised dystonia but am not constantly in spasms. I did rivotril and depakine (clonazepam) and 2 other things wich were absoluitely awful. I just feel better of without them. I would start reading pamflets and when it says it can aggavate dystonia and seizures....I do wonder what's the use. I personaly don't have much of a problem with dystonia but with the seizures I do! I also prefer dystonia including SD to being so very sleepy and having to cope by drinking coffee. Well, to da point: Muscle "relaxers... I would get spastic and then feel this thing in my head (I think that this is when the drug takes action) and get so "relaxed"...I would be stuck, like just unable to move whereas with the spasms...I might be spastic but at least I could still use my muscles...instead of sitting (or hanging) it out like a bag of patatoes. I'm sure we all got our own story so I wouldn't state it's no good for everybody, but this is my experience. |
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Posted by: NYer AdSD ® 09/20/2008, 14:34:05 |
I was diagnosed with Ad SD on 7/23/2008 and treated with Botox same day. Prior, I saw two ENT who didn't have a clue, including one hinting that this was "psychotropic" because my voice got clear when I was "distracted" during the laryngoscope. She thought I was subconsciously trying to subotage my employment because I hated my job. The best thing she did, was say she wasn't experienced in voice disorders, and needed asst, sending me to a Larygologist. I had a bout of this in 2001-02, was treated for Acid Reflux, given steroids, which cured me. Then, no problem since, though I had moments where speech was effortful, but voice sounded good. Then, in '08, I could feel it coming back; started back my acid reflux diet, assuming that was the culprit as prior diagnosis, lost 12 pounds, but voice got worst, by the week; I saw two ENT, who miss diagnosed me; finally, the Laryngologist, on first visit, got it right. I felt that's what the problem was because I started doing research on the doctor I was referred to and came across many voice disorder website, stumbling across SD info, and was shocked / relieved; I thought, my symtpoms were identical. I'm on first treatment of Botox, I still have bad days, but overall, more functional voice. Without Botox, I was ready to quit my job, that's how frustrating it became. I plan to see a speech therapist to aid / overcome / teach me better to train my voice / speech. As well as a Psychologist, to help with anxiety / stressors that can aggravate the SD. The less drugs I take, the better off I think. The Botox is enuf. I don't want nothing else pumped into me. I'm happy to be able to join th is board and know that I'm not an island. I don't feel alone in this anymore. |
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