Posted by: baystater ®
11/20/2010, 07:39:56
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I imagine that the time for any drug to work depends on the individual person's body chemistry. The "gold standard" drug for treatment of SD is Botox injections. However, it is not intended for treatment of essential tremor. It is unlikely that Neurontin will give you LONG TERM relief from the SD. I emphasized the long term aspect because I took Neurontin combined with a small amount of Klonopin and it was effective for about 18 months. After 18 months, it no longer worked to overcome the SD vocal spasms. Regarding the side effects of Neurontin, the only one I had was getting tired and sleepy late in the day. At that point, I had gradually built up my dosage and was taking a total of 900mg per day.
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Posted by: maf ®
11/20/2010, 08:40:24
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thank you for your reply. I tried botox for a couple years & have had unilateral SLAD R surgery both of which were not successful so I am hoping for some relief with drug therapy. My neuro feels that my voice should smooth out somewhat so I remain positive.
maf
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Posted by: slkoko ®
11/21/2010, 21:28:00
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Tried Neurotin for about a month last year. Unfortunately, I made the mistake of having a drink at my nephew's wedding and ruined a great family event.Nausea, vomiting and kind of passed out. I was fine the next morning. But never drink with Neurontin. Stopped taking it after that night. Wasn't doing anything for me but making me wobbily and tired. Botox is the best!
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Posted by: maf ®
11/30/2010, 20:30:52
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Do you recall what your Neurontin dosage was?
Thank you,maf
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Posted by: Renee ®
12/01/2010, 17:52:14
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I tried neurontin a few years back...If I remember correctly, there was some improvement initially, and then the benefits wore off...Everyone is different, though...
Renee
Modified by Renee at Wed, Dec 01, 2010, 17:52:54
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Posted by: Catherine1011 ®
12/04/2010, 15:05:57
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Hi,I've been on neurontin for several years because I also have fibromyalgia and neuropathy. I've been on very high doses, as much as 3800mg but found no relief from the SD. I wound up trying Lyrica instead and did find relief from the FM pain. I currently take 300mg of Lyrica and 1800mg of neurontin in order to combat some of the side effects of both meds. I still have no relief from the SD though. This goes to show how everyone is different, too, because I have a glass of wine everyday (which helps the SD) and it has no interaction with my meds. I tolerate both just fine. We're all very different in what works. Best of luck.
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Posted by: Dwight C. ®
12/24/2010, 12:13:37
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Hi all, I've had Spasmodic Dysphonia since I was 14 and am now 29. I have tried just about everything, short of the surgery. For a while I tried botox shots, but only the first one worked, so I stopped for a decade. (It turns out I just wasn't getting nearly a high enough dose.) Anyway, during the time I gave up on botox, I tried Neurontin several times. Ultimately, I decided it is not worth it for the cognitive impairments it causes. It has an extreme effect on learning and memory, requires higher dosages the more you take it, and for me only helped marginally. NEURONTIN is a drug that should NOT be taken by anyone who needs or wants to keep their mind clear, strong, and focused. Clonazepam is a better choice. Also, I've found that taking a 30ml of Delsym Cough syrup a day when can extend my good voice when my injection is starting to wear off. The active ingredient in Delsym is Dextromethorphan and NIH has done some preliminary studies on it for SD. It doesn't work as a stand alone treatmenat because the dose required makes one too loopy.
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Posted by: regharvey ®
12/24/2010, 12:59:15
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You take 30ml of Delsym cough syrup at one time or divide it? I am on 0.5 mg of Klonopin (one at night and one in the morning) which helps relax the larynx area. I do find that cough medicines help and have tried the Delsym routine with a little help, but I followed the dosage on the bottles. I get Botox injections every three months - 5 units in each false cord and 5 units into each true vocal cord. Experimenting, still. Sder since 2008, in treatment since Jan. 2009. Thanks for any information.
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Posted by: Dwight C. ®
01/02/2011, 13:23:41
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Delsym lasts 12 hrs so one dose a day is enough. For me just twice the normal dose is enough to elminate the spasms when they first come back, then maybe three times. But no more than that or you will start to feel weird and spacey, and your judgment and cognition may be impaired more than you realize.
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