Re: re:Neurontin
Natalie,I am also an ABductor SD and I've been on Neurontin for a few weeks. I'm still building up to the full dosage, but I feel like it's helping me. Sounds like Primidone is similar to Neurontin. I do think it cuts down on the effort required to speak. Similarly, it doesn't seem to help with voice volume, but it seems to lessen the spasming. I'm sleeping more deeply at night and feel a bit spacey during the day, but not really tired. Marcia
Re: re:Neurontin
Marcia- Thanks for writing back. Primidone and Neurontin are both anti-seizure medications, but Primidone is a much older medication. I am taking it because my mother has essential tremors and benefits from it, so we decided to see if it might also address the tremor associated with the SD. It sounds like the side effects of the Neurontin are similar to the side effects of the Primidone. The Primidone significantly decreases the effort it takes for me to speak- and consequently also helps with talking on the telephone. However, people on the other end of the phone still ask(at least once a week) if I am very ill!!!!
Re: re:Neurontin
I have a mild case of adductor spasmodic dysphonia. Neurontin is one of the few medications I have tried that has actually helped my SD. The other one is a rarely used antidepressant called Nardil. I only use the neurontin on occassion now because it caused me considerable memory problems. There need to be more options for people with mild SD or people for whom Botox doesn't work. Have you noticed any memory problems with the primidone?
Re: re:Neurontin
Dear Dwight: I have now been on the Neurontin for three days. I am taking a total of 500mg over the day. When I was taking more it had a sedating effect on me. I thought I was just going through the motions not realizing where I was. The Dr. is hoping to slow down the tremors and spasms of the cords and the diaphram. In hopes of allowing good oxygen exchange. The only antidepressant that I am on is zoloft. thanks and good luck Teressa Duffey
Re: re:Neurontin
Teresa, That's great. I hope it's helpful for you. Coffee might help with the sedation. It was certainly helpful with my voice, but I'm a writer and the memory problems annoy me.
Re: re:Neurontin
The Primidone does not cause me any memory problems, but I do find it quite sedating. I have cut back on the dosage and this has helped. It definitely decreases the effort it takes to speak, but it does not seem to decrease the spasms. I agree that we need more medication choices. That is why I have been asking about who is doing research.
Re: re:Neurontin
I haven't posted in awhile but I thought I'd add my two cents about medications. I've had adductor SD for 6 years and finally tried Botox 2 years ago. Worked well in the beginning but at this point the results are variable. About a year ago, I went to a new psychiatrist to find an alternative to the Prozac I'd been taking for depression for the last 10 years. I had suspicions that maybe the Prozac had caused my distonia (I'm always searching for possible causes--mostly in vain). She put me on Zoloft. I also had anxiety problems, so we decided to give clonopin a try to take the edge off the zoloft. What happened was, the clonopin seemed to extend the benefits of Botox for quite a few months longer than usual. It doesn't make me drowsy and I can even sleep better at night. I'm taking .5mg 3 times aday but I'm thinking of increasing the dosage. Now that I've read the last few postings on the BB, I'm going to pass the info to my psychiatrist and see what she thinks about these other drugs. She had never heard of SD when we met, but now she reads everything she can about it. She's one in a million!
Re: re:Neurontin
Teresa, I have also tried clonopin and I found it somewhat helpful, but not nearly as much as neurontin. Ask your doctor for a prescription of neurontin. For me it seems to work pretty well at about 400mg twice a day. It does cause memory problems for some people. Unlike antidepressants which sometimes take along time to work, you should be able to tell if the neurontin is helpful within a week or so. It has anti-depressant and anti-anxiety properties.
Re: re:Neurontin
Dear Dwight: Just wanted to let you know I am now in the 3rd week of taking the Nueurontin. Other then a little sleepy I am feeling fine. The neurologist did increase the dose which will be done gradually over the next 3 weeks. I am taking 200mg-am and 100 6pm and then 400mg bedtime. It seems that I am sleeping more sound, and during the day the tremors especially in the diaphragm have really slowed down. Wonderful so far so good. Thanks Teressa
Re: re:Neurontin
Dear Teressa,I'm glad the neurontin seems to be helping you. One thing you ought to know about Neurontin is that it has a very short half-life. What this means is that the higher dose you're taking at night, will not have a chance to help your voice during the day. Are you taking it for sleep at night? I find that I need to take at least a 300mg dose for it to have a noticeable affect on my voice. You might try taking 300mg sometime during the day and then calling up a friend on the phone about an hour and half later. If it's working, you might notice that you find it considerably easier to carry on a conversation. The only problem with Neurontin I have is this memory problems it creates. But if I weren't in grad school right now, that would not be such a concern. Good luck, I hope it helps.
Re: re:Neurontin
Hi Natalie,My brother, who has a severe case of Type II diabetes, has recently been put on neurontin. The doctors tell me that it is for his neuropathy, a condition where the blood vessels are constricted. As I write this message, my brother's undergoing a bypass operation to get the blood circulation to his legs. I wonder if the doctors who prescribe neurontin for people with SD are doing it for the circulation issue, or are there other benefits of this drug? -Joan
Re: re:Neurontin
Joan, Neurontin is an anti-convulsant, primarily used to treat epilepsy. But doctors have started using it now for many other things, including chronic pain, manic depression, and social anxiety disorder. I had not heard of using it for circulation problems. Perhaps he is taking it, not so much for the circulation, but for the concomitant pain of the neuropathy.
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