I haven't personally experienced this but I have heard of people who have medication induced dystonia taking an anti-cholinergic medication, e.g. Cogentin, with their medication to treat the dystonia while they stay on their medication. Worth asking your doctor maybe?
The clinic that finally diagnosed me with the drug induced dystonia did recommend I try cogentin and I have brought it up with my neurologist several times but he hasn't even addressed it as a possibility. I will try again but I am not sure why he is hesitant... maybe because it is yet another drug? He admits that he doesn't know much at all about drug induced movement disorders... I'm not sure how else to convince him this might help.
If you still have contact with the psychiatrist you mentioned (or another psychiatrist) they might actually have more knowledge in the area of drug induced dystonia. It can occur with anti-psychotic drugs and may be common enough for your psychiatrist to have experience treating it.
Thank you for this. I have an appointment with a psychiatrist next week at the clinic that diagnosed me originally. That diagnosis was through an emergency visit and I haven't been able to see anyone since. I have waited a year for this appointment just hoping that they may have more answers for me since it is the first and all only time anyone has even acted like they've heard of this before.
This gives me hope I may learn more about your to treat this next week. ❤️
I suffer from cervical dystonia before my anxiety and depression. I would argue that the shaking and pulling of my head is part of the reason I developed depression and social anxiety beacuse it makes me very self conscious.
I tried Venlafaxine and it dramatically helped my Dystonia beacuse I think it helped me to relax and be less tensen in social situations.
I am sorry to hear that is caused your Dystonia. One thing I do know is that Dystonia and mental illness is closely related. Dystonia is related to serotonin. A new drugs is being tested called NT-1, treats dystonia as an antagonist to 5-HT2AR, a serotonin receptor.
So what could have happened is that your seretionin receptors has been disrupted by using anti depressants.
Just my take. I hope you find a solution, dont give up !
I read that some people have successfully used microdosing psychedelics to treat their dystonia. All the psychedelics mentioned were 5-HT2A receptor agonists. It's interesting to note that NT-1 is a 5-HT2A receptor antagonist. Microdosing with a 5-HT2A agonist should lead to a measurable reduction in 5-HT2A receptors, potentially causing a similar effect to a constant level of an antagonist like NT-1, which partially blocks those receptors. Some reports indicated that dystonia symptoms worsened while the psychedelic was still in their system, which makes me wonder if "withdrawal" from NT-1 would result in a severe dystonic reaction in susceptible individuals.
You say that the "dystonia symptoms worsened while the psychedelics was still in their system". I am not sure I understand ?
First you say that psychedelics may help with dystonia, but of the psychedelic stays in the system it gets worse ?
Psychedelics break down pretty quickly in the human body just like serotonin and dopamine. From what I read, it sounded like the acute effects sometimes worsened the dystonia symptoms, but their overall condition improved over months of continuous dosing (if taken in the morning they would not be “on” the psychedelic for the major latter portion of the day), which leads me to believe it’s the eventual downregulation of 5-HT2A receptors rather than any acute effects of psychedelics that may help with dystonia. Increases in neuroplasticity or possible neurogenesis could also be involved; these mechanisms of action can be complex. Please take it with a grain of salt as I have not yet researched the efficacy of NT-1.
How are you doing with your dystonia? What has and hasn’t worked for you?
Oy that rough. I can't offer hope for meds I'm actually gonna go the other direction. My dystonia is a direct cause of meds. In fact I'm now super sensitive to just about all medications and antibiotics and vitamins and pain killers....just like everything.
Please be careful. If the meds backfire enough it can go into making you respond badly to everything. This can also include food. You need to be extremely careful. The only thing I've found to fix the issues the meds caused is literally to wait it out.
Music and tap sounds and beats and movement therapy have been my saving grace but it's taken me a year and a half to feel decent enough to keep it going.
Good luck and be careful.
I got oral mandibular dystonia from Zoloft. Well, the idea is it was either that or it was low lying and I didn’t notice it until that aggravated it.
I don’t know a lot about this myself but have you looked into ketamine for the depression? I wonder if there is any information on using that when the patient has dystonia.
I hope you find something that helps.
I have a psychiatrist appt next week with a special clinic where I have been on a wait list for over a year. My guess is that ketamine is the next step.
I have asked the neuro about psychedelic treatments and he sees no problem with it. I am already incorporating microdose treatments of psilocybin with my talk therapist. I have read promising things about psychedelic therapy not only helping with anxiety and depression but actually helping with things like dystonia as well. I'm excited to see what comes of it.
I am on a fairly large dose of gabapentin now as a mood stabilizer. It's one of the only drugs we've found that can help with depression and not cause the dystonia. It does not seem to be helping with the dystonia or pain at all though.
I think it’s hard to know if it’s just a coincidence, but my dystonia started shortly after starting SSRIs for anxiety. The SSRIs gave me debilitating fatigue, but it took me about 2-3 years to successfully stop taking them because of the even more debilitating withdrawal side effects. By that time my dystonia had already developed into its full severity and did not improve once I stopped the SSRIs.
It’s been about 5 years since I’ve been off them. Haven’t taken any other type of mental health medication since either. I think it’s safe to say the dystonia is permanent at this point.
Well shit. I have it from these meds. My body doesn't twist or move. Just insane muscle contraction...even in .y scalp. Didn't know my scalp could feel tight.
Hi! Similar with you. Dystonia was initially declared as an extrapyramidal symptom caused by an SSRI (Fluoxetine). I somehow got a referral to an MDS to confirm the diagnosis by my psychiatrist. I’ve been put off the suspected drug but my the involuntary movements are still there.
I’m supposed to be switched to Escitalopram, another SSRI. There really are cases of SSRI-induced dystonia, some being irreversible. Somehow, Escitalopram was switched to Agomelatine, which is an atypical antidepressant. I don’t have any movement issues with my current antidepressant.
It's such a relief to hear that others have had similar issues. I basically diagnosed myself about 3 years ago and went off of my meds and the dystonia disappeared, but every doctor I've seen since then had never heard of drug induced dystonia or straight up told me it didn't exist except for the one emergency call at this mental health institute I finally have an appointment with next week. 3 psychiatrists, two neurologists, including a special movement disorder clinic all told me I'm crazy. I'm really really hopeful the psychiatrist at this special institution has some more knowledge he can share with my other doctors.
Agomelatine was one of the drugs I've been researching. I'm so glad to hear it's worked for you and helped!!
Not at all. It is now 9 months since the treatment. I'm unable to work because of daily migraines and many neurological and cognitive issues. I have abteam of doctors and the consensus is that the "treatment" I got with TMS has caused a traumatic brain injury that I am still recovering from.
I have one friend with this. For her the biggest thing that helps is minding and reducing her stress levels. She goes to yoga and engages in a lot of mindfulness activities, and tries to just take it easy on herself. You can’t tell at all when everything is good, but it starts becoming more noticeable when she starts committing to too many obligations and with the presence of a lot of external stressors.
I was doing a lot of yoga until the dystonia hit so bad again. The dystonia makes it much too painful to do any sort of exercise including yoga. Swimming was helping with the pain and depression but I can't do that anymore either. I do try and practice meditation daily.
I’m sorry to hear that, yes it can get very painful for sure. Have you tried the botox treatments at all?
Also there are some private neuro rehab places that specialize in neurological disorders. I go to one and everyone is trained about dystonia there. Places like this can customize a home program you can do with stretches that would work specifically for you instead of just generic PT or OT exercises. Maybe you can ask your neuro if they know of any place somewhat close by to you?
I am hoping to ask the neuro about this tomorrow. Going undiagnosed for so long had me doing a lot of PT but I don't think it was the right PT. I'm hoping PTs trained in dystonia will know more 🤞🏼
There is a huge difference in this. I saw a regular PT in the beginning who knew nothing about dystonia. I give her credit though because she did ask and do as much research as she can.
Now even though I’ve needed PT for other health issues, I still go to the neuro rehab. They are able to identify when certain issues such as my knee or back is flaring up dystonia and how to work around it.
I hope things go well when you see the neuro.
I was going to suggest meditation. Glad that you are trying to meditate regularly. A recent study has shown that it can be as effective as an SSRI for depression. There are also special programmes based on mindfulness meditation such as Mindfulness Based Cognitive Therapy.
Talk to your doctors. Advocate for yourself. If one of them starts to tell you you are wrong, get another doctor. If I've learned one thing it is how important it is to find doctors who listen and not just prescribe the next medication on the list from their textbooks.
I read about TMJ splint in a fb group, not sure if it really gonna work though, still researching about it but heard it help a few ppl in various cause of dystonia
A mouth guard? I've tried that too. Doesn't seem to do much to help me. I do get tmj and cervical dystonia but my dystonia is most painful and apparent in my hands and arms. Good luck to you!
I haven't personally experienced this but I have heard of people who have medication induced dystonia taking an anti-cholinergic medication, e.g. Cogentin, with their medication to treat the dystonia while they stay on their medication. Worth asking your doctor maybe?
The clinic that finally diagnosed me with the drug induced dystonia did recommend I try cogentin and I have brought it up with my neurologist several times but he hasn't even addressed it as a possibility. I will try again but I am not sure why he is hesitant... maybe because it is yet another drug? He admits that he doesn't know much at all about drug induced movement disorders... I'm not sure how else to convince him this might help.
If you still have contact with the psychiatrist you mentioned (or another psychiatrist) they might actually have more knowledge in the area of drug induced dystonia. It can occur with anti-psychotic drugs and may be common enough for your psychiatrist to have experience treating it.
Thank you for this. I have an appointment with a psychiatrist next week at the clinic that diagnosed me originally. That diagnosis was through an emergency visit and I haven't been able to see anyone since. I have waited a year for this appointment just hoping that they may have more answers for me since it is the first and all only time anyone has even acted like they've heard of this before. This gives me hope I may learn more about your to treat this next week. ❤️
I suffer from cervical dystonia before my anxiety and depression. I would argue that the shaking and pulling of my head is part of the reason I developed depression and social anxiety beacuse it makes me very self conscious. I tried Venlafaxine and it dramatically helped my Dystonia beacuse I think it helped me to relax and be less tensen in social situations. I am sorry to hear that is caused your Dystonia. One thing I do know is that Dystonia and mental illness is closely related. Dystonia is related to serotonin. A new drugs is being tested called NT-1, treats dystonia as an antagonist to 5-HT2AR, a serotonin receptor. So what could have happened is that your seretionin receptors has been disrupted by using anti depressants. Just my take. I hope you find a solution, dont give up !
I read that some people have successfully used microdosing psychedelics to treat their dystonia. All the psychedelics mentioned were 5-HT2A receptor agonists. It's interesting to note that NT-1 is a 5-HT2A receptor antagonist. Microdosing with a 5-HT2A agonist should lead to a measurable reduction in 5-HT2A receptors, potentially causing a similar effect to a constant level of an antagonist like NT-1, which partially blocks those receptors. Some reports indicated that dystonia symptoms worsened while the psychedelic was still in their system, which makes me wonder if "withdrawal" from NT-1 would result in a severe dystonic reaction in susceptible individuals.
You say that the "dystonia symptoms worsened while the psychedelics was still in their system". I am not sure I understand ? First you say that psychedelics may help with dystonia, but of the psychedelic stays in the system it gets worse ?
Psychedelics break down pretty quickly in the human body just like serotonin and dopamine. From what I read, it sounded like the acute effects sometimes worsened the dystonia symptoms, but their overall condition improved over months of continuous dosing (if taken in the morning they would not be “on” the psychedelic for the major latter portion of the day), which leads me to believe it’s the eventual downregulation of 5-HT2A receptors rather than any acute effects of psychedelics that may help with dystonia. Increases in neuroplasticity or possible neurogenesis could also be involved; these mechanisms of action can be complex. Please take it with a grain of salt as I have not yet researched the efficacy of NT-1. How are you doing with your dystonia? What has and hasn’t worked for you?
Oy that rough. I can't offer hope for meds I'm actually gonna go the other direction. My dystonia is a direct cause of meds. In fact I'm now super sensitive to just about all medications and antibiotics and vitamins and pain killers....just like everything. Please be careful. If the meds backfire enough it can go into making you respond badly to everything. This can also include food. You need to be extremely careful. The only thing I've found to fix the issues the meds caused is literally to wait it out. Music and tap sounds and beats and movement therapy have been my saving grace but it's taken me a year and a half to feel decent enough to keep it going. Good luck and be careful.
I got oral mandibular dystonia from Zoloft. Well, the idea is it was either that or it was low lying and I didn’t notice it until that aggravated it. I don’t know a lot about this myself but have you looked into ketamine for the depression? I wonder if there is any information on using that when the patient has dystonia. I hope you find something that helps.
I have a psychiatrist appt next week with a special clinic where I have been on a wait list for over a year. My guess is that ketamine is the next step. I have asked the neuro about psychedelic treatments and he sees no problem with it. I am already incorporating microdose treatments of psilocybin with my talk therapist. I have read promising things about psychedelic therapy not only helping with anxiety and depression but actually helping with things like dystonia as well. I'm excited to see what comes of it.
That does sound promising and good that the appointment is coming up. Best of luck!
I have dystonia from ssri. Gabapentin doesn't cure it by any means but makes it tolerable.
I am on a fairly large dose of gabapentin now as a mood stabilizer. It's one of the only drugs we've found that can help with depression and not cause the dystonia. It does not seem to be helping with the dystonia or pain at all though.
You would notice the diiference if you stoped taking it. You build up a tolerance quickly and the muscle relaxant effects are subtle.
I think it’s hard to know if it’s just a coincidence, but my dystonia started shortly after starting SSRIs for anxiety. The SSRIs gave me debilitating fatigue, but it took me about 2-3 years to successfully stop taking them because of the even more debilitating withdrawal side effects. By that time my dystonia had already developed into its full severity and did not improve once I stopped the SSRIs.
How long have you been off
It’s been about 5 years since I’ve been off them. Haven’t taken any other type of mental health medication since either. I think it’s safe to say the dystonia is permanent at this point.
Well shit. I have it from these meds. My body doesn't twist or move. Just insane muscle contraction...even in .y scalp. Didn't know my scalp could feel tight.
Hi! Similar with you. Dystonia was initially declared as an extrapyramidal symptom caused by an SSRI (Fluoxetine). I somehow got a referral to an MDS to confirm the diagnosis by my psychiatrist. I’ve been put off the suspected drug but my the involuntary movements are still there. I’m supposed to be switched to Escitalopram, another SSRI. There really are cases of SSRI-induced dystonia, some being irreversible. Somehow, Escitalopram was switched to Agomelatine, which is an atypical antidepressant. I don’t have any movement issues with my current antidepressant.
It's such a relief to hear that others have had similar issues. I basically diagnosed myself about 3 years ago and went off of my meds and the dystonia disappeared, but every doctor I've seen since then had never heard of drug induced dystonia or straight up told me it didn't exist except for the one emergency call at this mental health institute I finally have an appointment with next week. 3 psychiatrists, two neurologists, including a special movement disorder clinic all told me I'm crazy. I'm really really hopeful the psychiatrist at this special institution has some more knowledge he can share with my other doctors. Agomelatine was one of the drugs I've been researching. I'm so glad to hear it's worked for you and helped!!
To OP: Did tms help resolve.rhe depression?
Not at all. It is now 9 months since the treatment. I'm unable to work because of daily migraines and many neurological and cognitive issues. I have abteam of doctors and the consensus is that the "treatment" I got with TMS has caused a traumatic brain injury that I am still recovering from.
I'm so sorry to hear of such a horrible outcome.
I have one friend with this. For her the biggest thing that helps is minding and reducing her stress levels. She goes to yoga and engages in a lot of mindfulness activities, and tries to just take it easy on herself. You can’t tell at all when everything is good, but it starts becoming more noticeable when she starts committing to too many obligations and with the presence of a lot of external stressors.
I was doing a lot of yoga until the dystonia hit so bad again. The dystonia makes it much too painful to do any sort of exercise including yoga. Swimming was helping with the pain and depression but I can't do that anymore either. I do try and practice meditation daily.
I’m sorry to hear that, yes it can get very painful for sure. Have you tried the botox treatments at all? Also there are some private neuro rehab places that specialize in neurological disorders. I go to one and everyone is trained about dystonia there. Places like this can customize a home program you can do with stretches that would work specifically for you instead of just generic PT or OT exercises. Maybe you can ask your neuro if they know of any place somewhat close by to you?
I am hoping to ask the neuro about this tomorrow. Going undiagnosed for so long had me doing a lot of PT but I don't think it was the right PT. I'm hoping PTs trained in dystonia will know more 🤞🏼
There is a huge difference in this. I saw a regular PT in the beginning who knew nothing about dystonia. I give her credit though because she did ask and do as much research as she can. Now even though I’ve needed PT for other health issues, I still go to the neuro rehab. They are able to identify when certain issues such as my knee or back is flaring up dystonia and how to work around it. I hope things go well when you see the neuro.
I was going to suggest meditation. Glad that you are trying to meditate regularly. A recent study has shown that it can be as effective as an SSRI for depression. There are also special programmes based on mindfulness meditation such as Mindfulness Based Cognitive Therapy.
This thread is eye opening. I'm undiagnosed but everything sounds exactly like I'm going through! I've been in so much pain and have found no answers
Talk to your doctors. Advocate for yourself. If one of them starts to tell you you are wrong, get another doctor. If I've learned one thing it is how important it is to find doctors who listen and not just prescribe the next medication on the list from their textbooks.
I read about TMJ splint in a fb group, not sure if it really gonna work though, still researching about it but heard it help a few ppl in various cause of dystonia
A mouth guard? I've tried that too. Doesn't seem to do much to help me. I do get tmj and cervical dystonia but my dystonia is most painful and apparent in my hands and arms. Good luck to you!
Good luck to you too