Administrator Altostrata Posted October 10, 2016 Administrator Share Posted October 10, 2016 Unfortunately, doctors in general do not understand any adverse effects of psychiatric drugs very well. This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner. "It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein All postings © copyrighted. Link to comment Share on other sites More sharing options...
kiki2015 Posted February 4, 2017 Share Posted February 4, 2017 hi there, i know this may seem a bit random but does anyone know if there is a clinic which will diagnose dystonia. I am desperate for help, i think GPs have been behaving in a way as if for me to foget that I have it or for it to wear off. I feel desperate for help. I really do. My memory is so poor it is incredible. I am in a desperate position. Please help, I cannot take this anymore. Medication history: 2002-2004 olanzapine, 2.5 2003-2004- 10 olanzapine, ~2005-2007 quetiapine, 300mg 2006- zopiclone, 2 weeks, 2007 - 2013= abilify, 2013-2016- tapering abilify Link to comment Share on other sites More sharing options...
UnfoldingSky Posted February 5, 2017 Share Posted February 5, 2017 Hi kiki, I'm not in the UK and hopefully someone who is will post with some other suggestions but you could try CEP, Council for Evidence Based Psychiatry, they may have some suggestions on their site or maybe could point you to someone who is competent. I'd post the link here but at the moment I can't get it to come up. I had tardive dyskinesia symptoms and was run around for years by one neurologist, left for years on end waiting for a follow-up appointment that never came. So I feel for you. I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions. Link to comment Share on other sites More sharing options...
UnfoldingSky Posted January 2, 2018 Share Posted January 2, 2018 A new member, Rosetta, has just kindly posted a tip on how to help minimize some dystonia symptoms using heat, to be found on the first page of kiki2015's thread here: I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions. Link to comment Share on other sites More sharing options...
Rosetta Posted August 17, 2018 Share Posted August 17, 2018 I do not believe for one minute that this condition is permanent. There may be dystonia from other causes that is permanent (such as cerebral palsy & physical brain injury). I believe quite strongly that if it's caused by protracted AD or benzo or AP WD (which is really dysautonomia -- a secondary after effect of going through the initial WD) that it is completely reversible. Mine is reversing, and just like all other symptoms of WD, every time it comes back it is a bit less intense. Sometimes, I didn't realize it was less intense until the wave had passed -- again just like all other symptoms. Dystonia is just another strange physical "hiccup" that the severely affected nervous system throws out. I'm willing to bet that some of the WD sufferers who have pins and needles, muscle tension pain and cold digits or limbs are actually having very mild dystonia that comes and goes. I think dystonia can restrict blood flow to the parts that tingle and feel cold. What I used to do when it was bad was put a heating pad on the tense muscle and the tingling would lessen or stop. That's why I theorize that many people on this board have mild dystonia, but they don't realize it. I feel that the medical opinion that this condition is permanent is created by the fact that the doctors do not understand that they are prolonging and making dysautonomia worse by continuing to prescribe the drugs that cause our symptoms. All they see are the patients who keep taking the drugs, and they don't believe patients who have healed by tapering or quitting. It never occurs to them that they are harming their patients. So, the condition appears to be permanent. There is absolutely no follow up or credit given to people who abandon their doctors and get better on their own. I'm pretty sure that if I told the doctor, who examined me for a stroke and didn't even diagnose the dystonia that was right there in front of his face, that I recovered by staying off Zoloft he wouldn't believe that I ever had dystonia in the first place. I most certainly did and do. I knew nothing about dystonia when I had the MRI the doctor ordered. The technician complained that my head was not centered on the machine. I told him that was the best I could do. I didn't know why he would say that because I felt centered. I realize now that my spine and hips could not be centered at the same time that my skull and neck were centered. That is how twisted my neck muscles were. Did anyone note that and reported to the doctor? I don't know, but I got no response from the doctor except that the MRI was clear. The right hand doesn't know what the left hand is doing. Dystonia should have been investigated after that MRI. On the other hand, I'm glad it wasn't because God knows what kind of medicine would have been prescribed and what it would have done to me? I'm sure I would have been told dystonia was permanent! Mine has improved so much that I don't get upset when it reoccurs. As for the mental anguish it causes, I think there is a mental condition that occurs almost in lock step with dystonia. It may or may not be separate from the anxiety that the physical feeling causes. I can't decide, but it's almost as if the brain's cognition and recall is being affected somehow! My anxiety is almost -- almost -- always worse during dystonic episodes. Occasionally, it is not. I suppose both condition could be cause by the hormonal imbalance which is caused by the dysautonomia. I'm having mild dystonia right now, and I'm also having PMS. I'm thoroughly convinced that some change in hormones is responsible for the dystonia. Having written this has increase the muscle tension and the area around my eye feels tingly and numb. So does my upper lip and nose. As usual, that feeling will recede when I stop writing, let the muscles relax and let the blood start flowing freely again. Soon, I will have a dystonia free day again. 1 https://www.survivingantidepressants.org/topic/16629-rosetta-ct-may-2011-too-fast-taper-feb-2017/?page=25 2001-2011 Celexa 10 mg raised to 40 mg then 60 mg over this time period May 2011 OB Doctor's Cold switch Celexa 60 mg to 10 mg Zoloft sertraline (baby born) 2012-2016 - Doctors raised dose of Zoloft up to 150 mg 2016 - Xanax prescribed - as needed - 0.5 mg about every 3 days (bad reaction) 2016 - Stopped Xanax Late 2016- Began (too fast) taper of Zoloft Early 2017 - Trazodone prescribed for bedtime (doseage unknown) Feb 2017 - Completed taper/stopped Trazodone Drug free since Feb 2017 2017 - Unisom otc very rarely for sleep Link to comment Share on other sites More sharing options...
kiki2015 Posted July 24, 2019 Share Posted July 24, 2019 On 8/17/2018 at 6:25 PM, Rosetta said: I do not believe for one minute that this condition is permanent. There may be dystonia from other causes that is permanent (such as cerebral palsy & physical brain injury). I believe quite strongly that if it's caused by protracted AD or benzo or AP WD (which is really dysautonomia -- a secondary after effect of going through the initial WD) that it is completely reversible. Mine is reversing, and just like all other symptoms of WD, every time it comes back it is a bit less intense. Sometimes, I didn't realize it was less intense until the wave had passed -- again just like all other symptoms. Dystonia is just another strange physical "hiccup" that the severely affected nervous system throws out. I'm willing to bet that some of the WD sufferers who have pins and needles, muscle tension pain and cold digits or limbs are actually having very mild dystonia that comes and goes. I think dystonia can restrict blood flow to the parts that tingle and feel cold. What I used to do when it was bad was put a heating pad on the tense muscle and the tingling would lessen or stop. That's why I theorize that many people on this board have mild dystonia, but they don't realize it. I feel that the medical opinion that this condition is permanent is created by the fact that the doctors do not understand that they are prolonging and making dysautonomia worse by continuing to prescribe the drugs that cause our symptoms. All they see are the patients who keep taking the drugs, and they don't believe patients who have healed by tapering or quitting. It never occurs to them that they are harming their patients. So, the condition appears to be permanent. There is absolutely no follow up or credit given to people who abandon their doctors and get better on their own. I'm pretty sure that if I told the doctor, who examined me for a stroke and didn't even diagnose the dystonia that was right there in front of his face, that I recovered by staying off Zoloft he wouldn't believe that I ever had dystonia in the first place. I most certainly did and do. I knew nothing about dystonia when I had the MRI the doctor ordered. The technician complained that my head was not centered on the machine. I told him that was the best I could do. I didn't know why he would say that because I felt centered. I realize now that my spine and hips could not be centered at the same time that my skull and neck were centered. That is how twisted my neck muscles were. Did anyone note that and reported to the doctor? I don't know, but I got no response from the doctor except that the MRI was clear. The right hand doesn't know what the left hand is doing. Dystonia should have been investigated after that MRI. On the other hand, I'm glad it wasn't because God knows what kind of medicine would have been prescribed and what it would have done to me? I'm sure I would have been told dystonia was permanent! Mine has improved so much that I don't get upset when it reoccurs. As for the mental anguish it causes, I think there is a mental condition that occurs almost in lock step with dystonia. It may or may not be separate from the anxiety that the physical feeling causes. I can't decide, but it's almost as if the brain's cognition and recall is being affected somehow! My anxiety is almost -- almost -- always worse during dystonic episodes. Occasionally, it is not. I suppose both condition could be cause by the hormonal imbalance which is caused by the dysautonomia. I'm having mild dystonia right now, and I'm also having PMS. I'm thoroughly convinced that some change in hormones is responsible for the dystonia. Having written this has increase the muscle tension and the area around my eye feels tingly and numb. So does my upper lip and nose. As usual, that feeling will recede when I stop writing, let the muscles relax and let the blood start flowing freely again. Soon, I will have a dystonia free day again. Well I do believe dystonia from antipsychotics can be permanent as I have been experiencing this for over 5 years. There is in fact no doubt in my mind that it is permanent. There are many people..such as psychiatrists who admit and acknowledge that AP cause permanent brain damage and all psychiatrists know this and have known this for a long time. It's a dirty little secret one which we only find out about when we are harmed. I'm pressing for a diagnosis of TD. Where can I get it and prove to them I have it. Medication history: 2002-2004 olanzapine, 2.5 2003-2004- 10 olanzapine, ~2005-2007 quetiapine, 300mg 2006- zopiclone, 2 weeks, 2007 - 2013= abilify, 2013-2016- tapering abilify Link to comment Share on other sites More sharing options...
Rosetta Posted July 24, 2019 Share Posted July 24, 2019 Hi Kiki, What dose are you on now? Has anything improved other than dystonia? I dont know know how to navigate the NHS or how to get private care in the UK. Maybe someone else will have suggestions for you. I think I would consult an attorney at this point considering that this has persisted for 5 years. Dystonia is still a part of waves for me, but it's less intense now. Like all other symptoms it comes and goes and slowly improves. I am not taking any psychiatric drugs. I hope it's not permanent for you, Kiki. Has it become any worse? Rosetta https://www.survivingantidepressants.org/topic/16629-rosetta-ct-may-2011-too-fast-taper-feb-2017/?page=25 2001-2011 Celexa 10 mg raised to 40 mg then 60 mg over this time period May 2011 OB Doctor's Cold switch Celexa 60 mg to 10 mg Zoloft sertraline (baby born) 2012-2016 - Doctors raised dose of Zoloft up to 150 mg 2016 - Xanax prescribed - as needed - 0.5 mg about every 3 days (bad reaction) 2016 - Stopped Xanax Late 2016- Began (too fast) taper of Zoloft Early 2017 - Trazodone prescribed for bedtime (doseage unknown) Feb 2017 - Completed taper/stopped Trazodone Drug free since Feb 2017 2017 - Unisom otc very rarely for sleep Link to comment Share on other sites More sharing options...
Mentor ShiningLight Posted September 18, 2019 Mentor Share Posted September 18, 2019 I'm not sure if this would also work for drug-induced dystonia, but it is great. TedX Talk: Healing Dystonia Through Dance Now: 100 mg Zoloft am, 50 mg Trazodone. Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢 Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg, 9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg 7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg. Jul 16 trazodone from 100 to 50 mg. Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d. Apr 24 Stopped klon!!! 🌞 Apr 4 Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019 0.25 klon March 11 Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day) Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many. *I speak from my experience. Nothing I say is medical advice. I'm not a doctor. Link to comment Share on other sites More sharing options...
Mentor ShiningLight Posted September 21, 2019 Mentor Share Posted September 21, 2019 And more videos. Dystonia Talk Now: 100 mg Zoloft am, 50 mg Trazodone. Daily drug burden decreased from 2050 in 2018 mg to 150 mg 🐢🐢 Zoloft: 1/24/23 increased to 100 mg after suicide attempt 9/17/22 cut 6 mg, 8/14/22 cut 6.5 mg, 5/7/22 cut 12.5 mg 3/20/22 cut 12.5 mg 10/26/21 cut 6 mg 10/17/21 cut 5 mg, 9/17/21 Cut 3 mg, 9/13/21 cut 4 mg, 8/29/21 Cut 2 mg 8/8/21 Cut 3 mg 7/30/21 Zoloft: Converted 25 mg to liquid. Also take 100 mg pill & 25 mg pill=150 mg total🌞 Feb 28, 2021 0 mg Gapapentin 2021 Gaba each dose 4x/day: Feb 27 7 mg (one dose only), Feb 10, 7 mg, Jan 14 10 mg 2020 Current taper schedule from Aug 30-present: drop 8 mg every 2-3 weeks. Aug 20 31 mg, Aug 18, 33 mg, July 29, 35 mg, July 23 38 mg, July 22 40 mg Jun 24 42 mg, Jun 15 44 mg, Jun 9 48 mg, May 22 50 mg, May 14 54 mg, May 7 56 mg, Apr 16 58 mg, Mar 28 60 mg, Mar 18 62 mg. Feb 26 64 mg. Feb 19, 66 mg. Jan 23, 70 mg. 2019 Dec 19, 72 mg. Nov 14 ,76 mg. Aug 8, 80 mg. Aug 6, 85 mg. Jul 26, 90 mg. Jul 11, 95 mg. Jul 16 trazodone from 100 to 50 mg. Jun 17-July 10 Slowly changed gab fr pill to liquid at same dose 100 mg 4x/d. Apr 24 Stopped klon!!! 🌞 Apr 4 Decreased gaba to 400 mg (100 mg 4x/day)-Apr 4, 2019 0.25 klon March 11 Klonopin .5 mg twice daily, varied dose til Apr 15. Started Klon fast taper 25%, short use Mar 16, 450 mg gaba 3x/day cut 600 mg--not exact!--updose after learning w/d Feb 20, 2019 1800 mg gabapentin; MD taper; off 3 days=mvt disorder & autonomic instability. July 2018 temazepam 15 mg 1-2; prn several x/wk til Jan/Feb 2019 when cold turkey, flu illness for months July 2018 started gabapentin 100 3x/day; titrated up to 1800 mg (600 3x/day) Buspar, I forget how much, 2 pills a day Jan 2017-July 2018 cold turkey. On Zoloft since maybe 2004? After trying many. *I speak from my experience. Nothing I say is medical advice. I'm not a doctor. Link to comment Share on other sites More sharing options...
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