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Posted by: duckie ® 12/03/2008, 09:18:33 |
Since Im new to this blog let me say Ive had SD for 30+yrs, Abductor/mixed type, and according to NIH it likely came from head trauma accident at about 12 yrs old. I was involved in the Central Va Support Group for 5 yrs, moved to PA where no SD was available in area, but a Dystonia, mainly torticollis was tho meetings erratically held and did not address so much of the laryngeal dystonias. Glad to be in area now where SD group is tho the group has only 7 or so.
I was only diagnosed after 30 yrs of having SD and luckily had experts doing the testing etc. having a small camera down to see the wobbling right side of my voicebox was cool...I could see the problem (with those specific sounds). My question is: After being on Klonopin (over 8 yrs now) I find it hard to maintain moods and researched to find the benzodiapines can reduce serotonin in brain. All of the SSRI's make my tremor worse and cause leg, arm cramps for me. Has anyone found that ST Johns Wort worked for them, tho I realize no particular treatment can be endorsed but only a comparison is asked for here. I know in Europe St Johns is RX more than the SSRI's and have actually bought some from Germany where it is regulated. I cannot say after using ST Johns for 5 yrs that it helped a lot for me...but I truly am depressed at times more than moderately. Therapy is helpful of course but SD is neurological and needs more then just therapy. While many will go thru periods of deprssion w/SD I'd like to know how many have experienced low moods or depression after extended use of Klonopin/or generic clonazepam? While it obviously is a good drug for some of the muscle issues, anxiety also in the larynx, my concern is what it's doing to the gray matter above? Also, have had botox from the best in the eastern US, wth no real improvement since abbductor muscle is in the back of neck, hard to reach and down time exceeded any improvement. Any suggestions on the tendancy to be depressed with long term use of benzodiapines and or solutions to this? My neurologist just keeps trying new and different anti depressants which so far after a yr are not working for me. Might add that due to the head trauma i also have petit mall seizures which may be part of why the antidepressants are causing side effects too severe to use. Thanking you in advance.... |
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Posted by: dcruik518 ® 12/04/2008, 18:13:26 |
Have you tried Nardil? The SSRI's don't work very well for me either and they tend to aggravate my voice. But Nardil worked wonders for me it not only wiped out all my social anxiety it also gave me a significant improvement in my voice. Your doctor might be reluctant to prescribe Nardil, however, because it can cause hypotensive crises in some people when taken with certain foods. However, most people don't have any problem with this. Weight gain is somehting you have to watch out for, though. Also, I think you're being a bit paranoid about Klonopin "damaging your brain." Whatever cognitive deficits you think you have now will stop once you go off the medicine. Teh question is whether the relief from anxiety is worth it. For me, it is. I'd also suggest taking Omega-3 Fatty Acids. There is now an extremely large body of reputable research, such as studies done by NIMH, which clearly show that Omega-3 fatty acids can offer considerable relief to people with bipolar disorder, depression, and can improve the cognitive functioning of people with ADD. It's important that you only take Omega-3's and not Omega-6 or Omega-9. That's because we already get too much of the latter in our American diet, while we hardly get any of the former because we don't eat nearly enought fish. I've been taking Omega-6 for about six weeks now and I've noticed several significant improvements: my mood is brighter, I have more mental energy, my brain feels clearer, I'm losing weight, and I can exercise longer and harder. I think besides a multivitamin Omega-3 fatty acids are properly the most important supplement to take. However, you do have to take A LOT of them. In the studies on depression patients were given a dose of 9000mg per day, which means taking 3 pills 3 times a day. For me that' no big deal. But some say, 6000mg is sufficient. Anyway, I wish you luck. I know it can be scary when you feel like your meds are making you foggy and depressed. Best, Dwight |
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Posted by: duckie ® 12/04/2008, 19:16:10 |
thank you 518 for your informative post. However note the distinction that I didnt say Klonopin was "damaging" my brain. It is medically true that in SOME folks the benzodiapines do reduce serotonin. It is likely affecting my brain, after all I know how for years I feel on this drug and off. I like the subtle relaxing it provides. Yet, one of the possible side effects of Klonopin and its generic is tremor. since I have tremor already I have to titrate my dose carefully or I'm too relaxed with a very tremoring voice. That is my individual reaction and may not occur with others with tremor.
I will research Nardil. My dr hasn't mentioned it. As to blood pressure that could be interesting as I used to have low blood pressure but last yr it started to rise a bit.Im of low to normal weight and eat healthy usually. ONe cup of coffee a day seems okay, but my dr suggested lowering this if my BP was rising and getting more exercise than a 25 minute dog walk. Of course if Nardil helps AB-ductor/mixed that could be a huge plus. Oh, I do take Flax oil which has all the Omegas in it and like it as it helps my eyes and prob less of (ocean pollutants)than fish oils. I had not researched the huge amounts you speak of and will give this a try. Costco has the huge bottle of all pure flax oil capsules at most reasonable cost. Appreciate that bit of info...it may help better than drugs; always prefer more natural things IF they work. My nutritional experience goes way back to Dr Lendon Smith and many others so I understand how the American diet is lacking. It is good to hear feedback, this board is a real plus. Thanks again! "Duckie" |
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Posted by: dcruik518 ® 12/07/2008, 15:49:40 |
All the studies for depression have used Fish Oil. From what I hear the fatty acids in Flaxseed oil are not broken down very efficiently by the body. Also not all fish oil supplements are equal. The standard stuff doesn't work very well for me; it's not energizing. The one I would recommend as by far the best is called Vectomega. Vectomega is the ONLY Omega 3 DHA/EPA Complex with a phospholipid peptide transport system, which ensures your body is absorbing the maximum nutritional potential. For this reason, Vectomega is up to 50 times more effective than fish oils.I think it's made in France but any decent sized health food store should carry it. In the end you save money because you only have to take about three pills a day, instead of nine. Also, it doesn't leave you with any fishy burps. It's worked great for me. Good luck, Dwight |
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Posted by: duckie ® 12/10/2008, 08:26:43 |
This is very interesting....i had not read about studies of which you speak. I assume this fish oil is "cleaned" of ocean pollutants as some say they are? Also, I was concerned about the fishy "burbs" as you refer, so that too is helpful.
Really appreciate your research. I had brain injury yrs ago, thus the dystonia and have trouble concentrating (ADD) so dont get all my research done efficently. Certainly wll give this fish oil product a try! Will follow up in couple months with my personal results. Thanks again, hope this product helps my depression/energy. Duckie |
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Posted by: Sueledge ® 12/07/2008, 18:56:38 |
I take a drug called Lamictal(also a seizure med) that is used as a synergist to my Lexapro and helps me a lot with the mood regulation. Check that out with your Dr. My SD and blepharospasms were undiagnosed for about that many years also. |
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