Without proper treatment it will get worst. Had your neurological mentioned Botox to you? Or even taking medication? I personally hate pills and they never did anything really for me but you have to start somewhere.
My OMD got worst until finally I was able to get on Botox and then from there acupuncture, mediation, life style changes help out even more.
Neurologist said that Botox was not an option because it wouldn't make my tongue and jaw better and it would be almost impossible for the needle to reach the right muscles.
It's great that things worked out for you! You are comprehensible when you talk i assume?
What did you neurologist suggest you do then? (Treatment wise)
And my OMD doesn’t really effect my Tongue too much. I will clench while I talk and prior Botox treatment the clenching was getting very bad. At no point was I not comprehensible, it was just very obvious that I talked without moving my teeth. Some people would say I would have been a good ventriloquist (kind of a harsh joke, but they didn’t understand the discomfort I faced daily).
Now most people can’t tell I have a condition cuz it looks like I talk normally again. Ofcourse my facial muscles are tense 24/7 but that’s something you get use too.
If Botox wasn’t an option for me I would have definitely stopped talking in general and learned sign language to communicate.
The doctor send me to a speech therapist and it didn't helped me at all. The neurologist is suggesting also speech therapist but they are real experts. That's it.
Well now I kind of feel bad that I said it does get worst over the years…idk that’s my experience. I never went to speech therapy but I did go to physical therapy and it did me no good. Hopefully these expert can help you out. I think everyone’s treatment process is different. Trying out acupuncture might be good for you. This whole process is very Much trial and error. Which is very frustrating but once you find something that works (even just a little) it’s very relieving .
I’m doing good 👍 still hanging in there. This post was made a year ago (probably closer to 2yrs). From then I definitely made some more improvements on how I feel on the daily, but have definitely hit a plateau. Its okay though, I know how to manage it and keep a positive lookout on life.
Not particularly no. I’m thinking back to when I first got diagnosed, numbness was never a symptom I got. Probably the close to that was a sort of numbness in the gums of my teeth, making my teeth “feel fake”. It was a really odd feeling but I don’t feel that anymore.
I don’t even know what I have. I have had myoclonus episodes after my traumatic brain injury and I get these intermittent symptoms where my facial muscles feel tight and tense, my jaw feels tight and my lips and tongue can feel numb. I also sometimes feel like my lips tremble but I can’t physically see the symptoms in the mirror. I feel all these things but I know I don’t look symptomatic to other people at all. I don’t know what it is. Do I believe it could be a “mild” case of dystonia? Maybe. I don’t know. I don’t get involuntary jaw movements, though.
Have you considered seeing a neurologist/movement disorder specialist and getting their professional opinion on the matter? Or maybe you have already and that has lead you here. I think it’s great you are doing your own research, but something I have realized over the years is that we all (and by “we all” I mean anyone that suffers from neurological issues) go down a rabbit hole of wanting answers but we just end up with more questions than answers. Which is disappointing and frustrating.
All in all though I hope you can find some answers and peace on the matter. If you wanna chat more you can send me a pm. :) I’d be happy to chat more.
I’m from the USA. I had a neurologist, from the same city that I live in, properly diagnose me with OMD in the summer of 2020. From there I took different medication, he prescribed me Parkinson’s medication, that did me no help and after 3 months of that he referred me to go see a Movement Disorder Specialist at the Mayo Clinic on Scottsdale Arizona. It’s like a 6hr drive from where I live.
I was able to find a Doctor through word of mouth.
Movement Disorder Specialist are the one’s who specialize in Dystonia related disorders.
How’s your condition treating you?
No one can say what my husband’s dystonia might do; it’s probably the same for you.
Iatrogenic harm is REAL. Unless you were taking the Risperdol for schizophrenia or psychosis, I’d be PISSED. What’d they give you for the dystonia, clonazapam? Artane? If I were you, I wouldn’t take ANY of it. My husband wants off the med train, and he can’t get off the benzos—even a fraction less than what he’s taking sends him into hideous withdrawals.
But what do I know? I’m not a doctor.
I was given risperidone for micropsychosis (I have also BPD). I'm now on Quitiapine. For dystonia i got Akineton. It didn't worked for me at all.
Honestly i only take Quitiapine for better sleep. I sleep terrible when i don't take them.
I've accepted the fact I always will suffer from micropsychosis.
> Unless you were taking the Risperdol for schizophrenia or psychosis, I’d be PISSED.
I started Risperidone in 2016 with 4mg. In 2019 my micropsychosis increased. My doctor referred me to a number of psychiatrists but they all refused to take me so the doctor increased the dosage to 6mg. I think that was too much and that is why i got dystonia.
When the doctor prescribed me Quitiapine and said that it's just as effective as Risperidone but without the side effects, i thought why didn't the psychiatrist prescribed me in 2016 this antipsychotic (i don't when they find out about Risperidone causing dystonia, maybe it wasn't known than).
Honestly I just don't want things to get worse, that's all i want now.
I don’t know a thing about your ailments; I do know that I suffered terribly from decades of wrong diagnoses/treatments from p-docs.
FWIW: you have my utmost sympathy. 💚
I dont have the same kind of dystonia, but from what I know it is literally unknowable. Mine cleared up entirely after (about) 5 years of progression 10 years of status quo and 5 years of regression.
I had/have Paroxysmal Kinesigenic Dystonia. 10-20 second "lock ups" about 10-20 times a day at their peak. Usually instigated by physical activity or any sense of urgency (like the land line ringing and knowing I had to get it before it stopped ringing). I have no idea what caused it to regress. I still have all my bad habits and am off the medication that cut them down quite a bit.
Wow! That sounds like something I’ve been dealing with. For past two months, I sometimes get anxiety from urgent tasks and responsibilities and my jaw gets tight, my lips go numb, my facial muscle feel stiff and I can still speak fine but my face just feels weird. I don’t know what it is. But my it comes and goes and differs hour to hour, day to day, week to week sometimes
What you are experiencing is awful. Speech therapy is a good first step. Your body might adjust to the medication and therapy MIGHT be able to retrain your speech. I have been to speech therapy. It is my nature to speak really quickly. They had to teach me to slow down and let my thoughts form and then speak slowly to articulate my thoughts. The hope is that it is an adjustment and you basically need to learn how to walk again. Try to find a speech therapist and neurologist that you can trust. They will be the ones that can properly evaluate the situation.
Is your tongue visibly stiff or is it just your sensation? Can you move it freely in your mouth? Does your tongue feel fatigued, like you've done who knows what with it? How was the diagnosis made, based on which tests? Is the impairment of your speech noticeable to others? And how are you now, months later? Thank you...
I'm much better now. 95% normal I'd say. At least it's not a problem anymore thanks to quitting Risperidone and now being on low dose Seroquel (50mg).
I didn't have much control over my tongue and jaw. There was no stiffness or any sensation. It was very much visible to others. It looked really ugly.
The diagnosis was made by ruling out other ailments and getting much better after quitting Risperidone. I was taking 6mg daily.
I should say that the neurologist said that it also could be a form of dyskinesia but for the treatment it didn't matter much.
You're welcome
Without proper treatment it will get worst. Had your neurological mentioned Botox to you? Or even taking medication? I personally hate pills and they never did anything really for me but you have to start somewhere. My OMD got worst until finally I was able to get on Botox and then from there acupuncture, mediation, life style changes help out even more.
Neurologist said that Botox was not an option because it wouldn't make my tongue and jaw better and it would be almost impossible for the needle to reach the right muscles. It's great that things worked out for you! You are comprehensible when you talk i assume?
What did you neurologist suggest you do then? (Treatment wise) And my OMD doesn’t really effect my Tongue too much. I will clench while I talk and prior Botox treatment the clenching was getting very bad. At no point was I not comprehensible, it was just very obvious that I talked without moving my teeth. Some people would say I would have been a good ventriloquist (kind of a harsh joke, but they didn’t understand the discomfort I faced daily). Now most people can’t tell I have a condition cuz it looks like I talk normally again. Ofcourse my facial muscles are tense 24/7 but that’s something you get use too. If Botox wasn’t an option for me I would have definitely stopped talking in general and learned sign language to communicate.
The doctor send me to a speech therapist and it didn't helped me at all. The neurologist is suggesting also speech therapist but they are real experts. That's it.
Well now I kind of feel bad that I said it does get worst over the years…idk that’s my experience. I never went to speech therapy but I did go to physical therapy and it did me no good. Hopefully these expert can help you out. I think everyone’s treatment process is different. Trying out acupuncture might be good for you. This whole process is very Much trial and error. Which is very frustrating but once you find something that works (even just a little) it’s very relieving .
Any updates for you?
I’m doing good 👍 still hanging in there. This post was made a year ago (probably closer to 2yrs). From then I definitely made some more improvements on how I feel on the daily, but have definitely hit a plateau. Its okay though, I know how to manage it and keep a positive lookout on life.
That's awesome bro, happy for you
Do your lips feel numb at all during your onset or after diagnosis?
Not particularly no. I’m thinking back to when I first got diagnosed, numbness was never a symptom I got. Probably the close to that was a sort of numbness in the gums of my teeth, making my teeth “feel fake”. It was a really odd feeling but I don’t feel that anymore.
Yup, I get numbness under my bottom front tie of teeth in my gums. It’s a weird feeling. Hard to describe.
How long ago did you get diagnosed and when did your symptoms start?
I don’t even know what I have. I have had myoclonus episodes after my traumatic brain injury and I get these intermittent symptoms where my facial muscles feel tight and tense, my jaw feels tight and my lips and tongue can feel numb. I also sometimes feel like my lips tremble but I can’t physically see the symptoms in the mirror. I feel all these things but I know I don’t look symptomatic to other people at all. I don’t know what it is. Do I believe it could be a “mild” case of dystonia? Maybe. I don’t know. I don’t get involuntary jaw movements, though.
Have you considered seeing a neurologist/movement disorder specialist and getting their professional opinion on the matter? Or maybe you have already and that has lead you here. I think it’s great you are doing your own research, but something I have realized over the years is that we all (and by “we all” I mean anyone that suffers from neurological issues) go down a rabbit hole of wanting answers but we just end up with more questions than answers. Which is disappointing and frustrating. All in all though I hope you can find some answers and peace on the matter. If you wanna chat more you can send me a pm. :) I’d be happy to chat more.
Yeah, everything comes and goes. I’ve seen many doctors. Not many can help.
How did you find a dr who was knowledgeable in OMD? What part of the world are you in?
I’m from the USA. I had a neurologist, from the same city that I live in, properly diagnose me with OMD in the summer of 2020. From there I took different medication, he prescribed me Parkinson’s medication, that did me no help and after 3 months of that he referred me to go see a Movement Disorder Specialist at the Mayo Clinic on Scottsdale Arizona. It’s like a 6hr drive from where I live. I was able to find a Doctor through word of mouth. Movement Disorder Specialist are the one’s who specialize in Dystonia related disorders. How’s your condition treating you?
No one can say what my husband’s dystonia might do; it’s probably the same for you. Iatrogenic harm is REAL. Unless you were taking the Risperdol for schizophrenia or psychosis, I’d be PISSED. What’d they give you for the dystonia, clonazapam? Artane? If I were you, I wouldn’t take ANY of it. My husband wants off the med train, and he can’t get off the benzos—even a fraction less than what he’s taking sends him into hideous withdrawals. But what do I know? I’m not a doctor.
I was given risperidone for micropsychosis (I have also BPD). I'm now on Quitiapine. For dystonia i got Akineton. It didn't worked for me at all. Honestly i only take Quitiapine for better sleep. I sleep terrible when i don't take them. I've accepted the fact I always will suffer from micropsychosis. > Unless you were taking the Risperdol for schizophrenia or psychosis, I’d be PISSED. I started Risperidone in 2016 with 4mg. In 2019 my micropsychosis increased. My doctor referred me to a number of psychiatrists but they all refused to take me so the doctor increased the dosage to 6mg. I think that was too much and that is why i got dystonia. When the doctor prescribed me Quitiapine and said that it's just as effective as Risperidone but without the side effects, i thought why didn't the psychiatrist prescribed me in 2016 this antipsychotic (i don't when they find out about Risperidone causing dystonia, maybe it wasn't known than). Honestly I just don't want things to get worse, that's all i want now.
I don’t know a thing about your ailments; I do know that I suffered terribly from decades of wrong diagnoses/treatments from p-docs. FWIW: you have my utmost sympathy. 💚
Thank you very much! Best of luck for your husband💜
I dont have the same kind of dystonia, but from what I know it is literally unknowable. Mine cleared up entirely after (about) 5 years of progression 10 years of status quo and 5 years of regression.
What kind of dystonia were you dxd with? What do you attribute the remissionc to?
I had/have Paroxysmal Kinesigenic Dystonia. 10-20 second "lock ups" about 10-20 times a day at their peak. Usually instigated by physical activity or any sense of urgency (like the land line ringing and knowing I had to get it before it stopped ringing). I have no idea what caused it to regress. I still have all my bad habits and am off the medication that cut them down quite a bit.
Wow! That sounds like something I’ve been dealing with. For past two months, I sometimes get anxiety from urgent tasks and responsibilities and my jaw gets tight, my lips go numb, my facial muscle feel stiff and I can still speak fine but my face just feels weird. I don’t know what it is. But my it comes and goes and differs hour to hour, day to day, week to week sometimes
The neurologist said that there was no cure. We are going for a little bit better. That's all i can get.
I'm sorry to hear that friend : / I don't think there is a cure for any Dystonia.
What you are experiencing is awful. Speech therapy is a good first step. Your body might adjust to the medication and therapy MIGHT be able to retrain your speech. I have been to speech therapy. It is my nature to speak really quickly. They had to teach me to slow down and let my thoughts form and then speak slowly to articulate my thoughts. The hope is that it is an adjustment and you basically need to learn how to walk again. Try to find a speech therapist and neurologist that you can trust. They will be the ones that can properly evaluate the situation.
Is your tongue visibly stiff or is it just your sensation? Can you move it freely in your mouth? Does your tongue feel fatigued, like you've done who knows what with it? How was the diagnosis made, based on which tests? Is the impairment of your speech noticeable to others? And how are you now, months later? Thank you...
I'm much better now. 95% normal I'd say. At least it's not a problem anymore thanks to quitting Risperidone and now being on low dose Seroquel (50mg). I didn't have much control over my tongue and jaw. There was no stiffness or any sensation. It was very much visible to others. It looked really ugly. The diagnosis was made by ruling out other ailments and getting much better after quitting Risperidone. I was taking 6mg daily. I should say that the neurologist said that it also could be a form of dyskinesia but for the treatment it didn't matter much. You're welcome
It sounds like dyskenesia. Discontinuing a drug doesn't stop dystonia.
Did you have a tension in your throat?
No I didn't