Posted by: Hoarse Whisperer ®
06/10/2007, 23:42:38
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Hi Jen,This is great that you have high hopes for improvement. Good for you! What kind of "movement specialist" did you see? A neurologist? Lori
AB/SD since 2003
DFW Texas
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Posted by: chaanz ®
06/11/2007, 08:31:00
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Hi, JenFor sure I haven't heard of this drug... but the moment I read your post, I called for an appointment with my GP. Hey. I'm willing to try anything that might help. Be warned, there will be naysayers but what works for one might or might not work for someone else. I'm willing to try. Thanks for your post. I'm actually excited although I will (try)to maintain a realistic state of mind. Melody
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Posted by: possitiveJ ®
06/12/2007, 12:38:52
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Hi there!I saw a Dr. in Mass. I live in Maine.
Artane was prescribed for me because I have Secondary Dystonia of my whole body! I am one great big massive knot. I had lost my voice. (SD) I knew I did not want botox! That was not even something I would consider. I could deal with having a sexy voice. People would have to deal with it. I was very comfortable with the "New Jen Voice". Little did I know that the medication to help relax the muscles of my whole body would help my voice. I would never say this is the answer. Cure all for SD. I also have myocolonus.
I was so excited with the results that I have had. It was worth sharing. Everyone is different. Melody! Keep me posted after you have your vist with your GP.
Do not go gungho. Start of small and listen to your DR. increase slowly. Have a great day!
Jen
myocolonus, SD, Secondary Dystonia
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Posted by: Steve G ®
06/13/2007, 09:20:25
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Hi Jen,Glad to hear you're getting good results from the drug your doctor put you on. If your current drug was not helping your voice, would you consider botox for your SD? You sound like you have a very positive attitude! Steve G (formerly from Maine until last year)
sgrand1057@lycos.com
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Posted by: mdubovick ®
06/12/2007, 22:34:23
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I looked up Artane on www.medco.com . Medco is the supplier of my prescription drugs and is one of the largest companies of its type in the US (formerly Merck/Medco).Artane is used mostly by people with Parkinson's Disease. Similar to many drugs, it comes with lots of warnings. People with certain medical conditions should not take it; People taking certain medications should not take it; And there are many possible side effects, some very serious, others less serious. In taking any drug, it is important to pay attention to these warnings. In the case of Artane, pay close attention because some of the warnings, i.e. if you have certain medical conditions or are taking certain medications, can lead to some pretty serious reactions.
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Posted by: chaanz ®
06/13/2007, 08:18:37
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The risk with any medication carries side effects, some serious, some not. Yes, consult with your doctor to rule out any medication interaction. Speaking for myself after talking with my doctor, the possible benefit of Artane outweighs the risk of serious side effects. Yes, it is primarily used for treatment of Parkinsons disease. It is an anti-spasmodic drug used if I'm not mistaken, to also treat focal dystonias. Although the information I have read doesn't specifally mention SD, it seems that there may be some benefit to some people with SD. I'm certainly hoping so. That old cliche comes to mind "no pain, no gain". I am mentally and emotionally completely worn out from dealing with this disorder and am one of those individuals that is ready to try most anything for some relief.Melody
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Posted by: jwillford ®
06/26/2007, 13:01:22
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Hi Jen - I'm real anxious to know if the voice benefits of Artane are continuing for you. Did you have any side effects, like sleepiness?I'm ready to make an appointment to discuss it with my doctor! Thanks.
Jo Anne
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Posted by: possitiveJ ®
06/28/2007, 09:42:13
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Jo Anne,I can see a huge difference in my voice. I am not having side affects. I will tell you when I first started taking it, yes I did feel sleepy. My muscles had been in such a termoil for so long that I really needed them to rest. I really had to listen to my body. I could not fight it! From reading many peoples stories. I found out that what is great for one is not always good for another. Please keep me posted on how you make out! Jen
207-767-0128
bettersrus@yahoo.com
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Posted by: jwillford ®
07/03/2007, 13:15:24
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Jen, thank you so much for posting your experience with Artane. God opened another door for me when I read your message. It seems every time I get really discouraged, He opens another door, and I just hope that one of these days it will be the right one!Based on your post, I scheduled an appointment with my family doctor to get his thoughts. He admittedly has no experience with SD and was vaguely familiar with Artane. I went equipped with information printed from my drug insurance company, list of meds a neurologist had tried me on a few years ago, all my current meds - and persistence. After reviewing the info he decided there wasn't a reason not to try it, "Sometimes solutions are found through persistent patients who won't take no for an answer." My husband thinks he was calling me a pain in the butt. But if we don't continually search for solutions, who will? Anyway, he did prescribe Artane with specific instructions on dosage, gradually increasing in two day increments. He did ask me to come back in 10-12 days to see if there was improvement and to see how I tolerate the Artane.
I started on Wednesday evening, 6/27, and can honestly say that I saw an improvement in my voice within 24 hours. I have tried so many things that seem to work for a short time, then I'm right back where I started. So I am trying to be conservatively optimistic, but it's hard to hold the excitement back! I've had no side effects (yet). I did stop taking Inderal (for tremors) when I started the Artane and I think it was the withdrawal that made me all jittery for 4-5 days, but that is basically gone as of yesterday. I plan to e-mail you off line to get details on dosage, type of SD you have, etc. My voice isn't perfect yet, but it is so much improved that I can now communicate without having to repeat myself time and time again. It's every bit as good as after Botox, but I have AB and AD SD plus tremors in my throat, so I was a bit of a challenge for that wonderful ENT. Thanks again, Jen, and all others who so willingly share their experiences on this board. I appreciate all the input so much! Have a happy and safe 4th!!
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Posted by: chaanz ®
06/29/2007, 11:11:48
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Hi Jen - do you remember how long you were on Artane before you started noticing a difference?I've been taking it for approx. 2 weeks. Maybe it's my imagination or a placebo effect, but I have noticed inconsistent improvement. I still do the spasm thing but it seems to have improved somewhat.
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Posted by: chaanz ®
07/05/2007, 11:43:29
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greetings to allI am also on Artane and I'm almost afraid to say that it is helping, but the fact is that I do believe it is. I've been able to talk on the telephone with coherence and wowowow.. didn't have to keep repeating myself, what a wonderful feeling. This is not to say that I'm 'cured' cause I'm certainly not, but by golly I feel that the Artane is responsible for the improvement I've experienced and as I continue to up the doseage, I'm cautiously optomistic. Part of my job here is to assist patient getting enrolled in patient assistance programs for medications. I had to call to enroll a patient just yesterday and God Bless America, I WAS COHERENT!!! and additionally, I was able to ask the patient questions and she actually UNDERSTOOD ME. As I've mentioned above, I'm trying not to get too excited and hopeful, but believe me I'm even grateful for just being understood once in a while.
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Posted by: Paula B ®
07/07/2007, 12:08:55
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Hey Chaanz,Just be carefull. I'm glad that your voice is improving, but it worries me that you are upping the dosage. If Artane was a cure all to SD, we would all be taking it. Make sure to check on any complications or bad reactions to this drug. I would hate to have you get a not wanted result. I wish you the best, Paula
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Posted by: chaanz ®
07/10/2007, 08:41:32
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Hi, PaulaThank you for your concerns about meds. I wouldn't want to infer that Artane is a cure-all. I'm sure, like most of us, that we all hold on to some hope for something/anything that might provide some relief. The new/old standby cliche goes into effect here. "What doesn't work for one may work for another". I'm paraphrasing but it is applicable i.e. botox works wonders for some. It doesn't do a thing for me. Any and all my meds are monitored by a doctor. I'm not one to go to the street (artane in the street?)for medications. Anyway, i've not had any bad reactions and I feel like there is at least minimal improvement. I'll take what I can get, ey?
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Posted by: Jesse ®
09/03/2007, 15:52:15
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I would like to thank you so much for your posting. I have been on Artane now for a couple of months. After the first couple of weeks, my dosage has remained at 5 mg and my voice is always about 80-90% of what I would consider normal. It has been getting better the more that I talk. It's been so long since I have had a "normal" voice, that I may have just forgotten how. I was diagnosed with SD in the spring of 2000. I went through about 7 botox treatments that did work in the beginning but lost the effectiveness the more I had them. I decided to see Dr. Burke in the fall of 2004 to have the RE/NE surgery. I was unable to speak for 6 months and then, while trying to speak, I was diagnosed as having muscle tension dystonia. I went back the the UCLA Med Center and had a laryngoplasty that had no effect. I then went to Washington University in St. Louis where, after many voice therapy sessions, Dr. Paniello suggested voice therapy. As many of you know, that was not helpful. I finally found a physician (Dr. Krowiak) in my home town of Indianapolis who began injecting my false vocal chords. My voice would leave me for about of month but I was able to speak again for about 2 months at a time so it was better than the nothing I was used to. When I read this post, I forwarded to Dr. Krowiak. We set an appointment and discussed dosing and decided to give it a month. I was very skeptical after everything I had been through and had zero expectations. Within 24 hours, I could actually speak again. A little weak but I noticed an incredible difference. I increased from 1 mg to 5 mg within a few weeks. I found the 2 and 1/2 pills to be a nice balance between voice quality and side effects. Another benefit that I have received is that I sleep much better. I have always had a sleep disorder and there is a noticeable difference in my sleep pattern. Yes in the beginning I was tired and it sapped some energy out of me. After awhile, these side effects subsided and my voice quality has only increased. I am very successful and I have never let my voice disorder get in the way of my life. If anybody would like to discuss further, please let me know. Thanks again, Jesse
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Posted by: Hoarse Whisperer ®
09/04/2007, 12:53:17
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What type of SD do you have - abductor (AB) or adductor (AD)?Lori
AB/SD since 2003
Dallas, Texas
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Posted by: Jesse ®
09/19/2007, 16:54:46
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AB. I was told that the DE/RE surgery actually helped the SD but for me it ended up causing muscle tension dystonia (from what I was told). So I don't really know if I still have SD based on everything that I have had done. I wanted to post my experience because I know how incredibly frustrating this disorder is. I think everybody should at least try Artane. The side effects are minimal compared to many other drugs and at least a few of us have had some positive results. I take the generic and it isn't an expensive or non-formulary drug. The only thing my doctor was concerned about was if my insurance would question it since I don't have Parkinson's. He called it in, gave me 999 refills, and I pay $10 a month. I used to have to go in every 3 months or so and have surgery. Since I was getting my false chords injected, I had to be put under for a 10 minute procedure. Now I just take 2 1/2 pills before I go to bed and I wake up every day being able to speak. The effects are slightly better every day. Of course I was skeptical and I am terrified that one day I will wake up and it won't work! Let's just hope that doesn't happen and I hope that this will help others as well. Jesse
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