I was a test subject for Ingrezza that did not work. Austedo was planting suicidal thoughts in my mind. I was taking Geodon without problem but could not afford it as insurance ran out and my doctor put me on Perphenazine. I felt a tugging in my side but it was not noticeable. I was going through stressful situation and Doctor said that could be the cause. He should have thought about the Perphenazine because getting TD is the first side effect mentioned as major. So I have it now 9 years and its' more of trunk movements. He only did the AIMS scoring after I got TD and should have been doing these tests before. He switched me to Seroquel where I read even 25mg. of that can cause the problem. It really sucks living with this condition. He did mention DBS but I said I already feel like a freak as it is. I know someone who had that done and Medicare did cover it but he has had to go in for adjustments like 3 times in last 5 years.
Seroquel is less likely to cause tardive dyskinesia. It is possible but needs to be at high doses. 25 mg is a very low dose. DBS is an option in severe cases (OFF label).
@@luisezayasmdpt4397 Thanks for responding. I forgot to mention while I was feeling muscle spasms they were not noticeable to others and maybe if Perphenazine was stopped at that point they maybe they would have stopped and not became visible like they are today. I cannot sit straight for longer than a minute as the trunk does it's own thing. Not that noticeable when standing. I am trying the Ginko and Manganese. This is the guy I know and he had it so bad his body moved like a snake. He denies taking any anti-psychotics and said it was from SSRI's. He did do the DBS and got it approved. He lives a relatively normal life now. Everything seems to come with risks. I saw videos where people were getting it from the CV shots. Might give acupuncture a try as well.
@@thehaircutbook Lol! Brian you were the one I was referring to that had the DBS done but had to have a couple adjustments made since you had procedure. I am still sitting on the fence with that idea. It appears the condition is becoming more and more known based on the videos I see put out there.
@@DeanBeith too funny in the sense of such a small world. RUclips does not show who I am responding to but hello DS. I remember speaking with you a few times in the past. The technology continues to improve and be under new development. On this past Tuesday I received two new batteries from Medtronic. This new rechargeable unit just came to market; it’s super thin and very quick to recharge! So DS with you being on the fence, take that step over to the DBS field. The person who posted this video highlights three negative things about DBS (Invasive, expensive, and infection)….You know me and working one on one with my neurosurgeon and neurologist plus staff locally and nationwide… I’d dive deeper on it to say the CHANCES of infection are there however single digit slim. The expense or cost of the surgery will all be dependent upon your insurance and coverage. The idea of it being invasive or minimally invasive surgery is also a thin line (The technology has advanced so far that the procedure is very controlled and done on such a micro size level with live x-ray/MRI style views of what the surgeon and their staff are doing)
If i have tarive diskenesia, and my most of my movements are uncontrollabel tongue movements and mouth movements, will a botox injection work to stop the tongue from moving around so much? If my tongue would stop moving, i could almost feel normal again as most of the other tremors and movements in the rest of my body are minimal...my tongue does not protrude outside of my mouth, but it is consistently moving uncontrollably in my mouth and that makes the tongue tired
A very low dose of botulinum toxins injected into the genioglossus muscle might help. It has to be injected by a person with a lot of experience in the procedure. A side effect is speech problems and swallowing issues.
@@luisezayasmdpt4397 are the side effects likely to occur? I read a story about a woman yesterday that had disaastrous results when she had botox injected for migraines. If the side effects are likely to occur, it doesn't sound worth it to me at all.
Need to be seen by a movement disorder neurologist to evaluate the possibility of facial dystonia. The treatment depends on the phenomenology (dystonia, stereotypies, myoclonus, chorea, tics, etc...). Dyskinesias means abnormal movements, which can be any type of phenomenology. Again, treatment depends on the type of phenomenology.
TD is ruining my life. I’m so worried and exhausted.
From what you have seen, does classical TD with tongue movememts and facial grimacing go away in years? What did you see?
I was a test subject for Ingrezza that did not work. Austedo was planting suicidal thoughts in my mind. I was taking Geodon without problem but could not afford it as insurance ran out and my doctor put me on Perphenazine. I felt a tugging in my side but it was not noticeable. I was going through stressful situation and Doctor said that could be the cause. He should have thought about the Perphenazine because getting TD is the first side effect mentioned as major. So I have it now 9 years and its' more of trunk movements. He only did the AIMS scoring after I got TD and should have been doing these tests before. He switched me to Seroquel where I read even 25mg. of that can cause the problem. It really sucks living with this condition. He did mention DBS but I said I already feel like a freak as it is. I know someone who had that done and Medicare did cover it but he has had to go in for adjustments like 3 times in last 5 years.
Seroquel is less likely to cause tardive dyskinesia. It is possible but needs to be at high doses. 25 mg is a very low dose. DBS is an option in severe cases (OFF label).
@@luisezayasmdpt4397 Thanks for responding. I forgot to mention while I was feeling muscle spasms they were not noticeable to others and maybe if Perphenazine was stopped at that point they maybe they would have stopped and not became visible like they are today. I cannot sit straight for longer than a minute as the trunk does it's own thing. Not that noticeable when standing. I am trying the Ginko and Manganese. This is the guy I know and he had it so bad his body moved like a snake. He denies taking any anti-psychotics and said it was from SSRI's. He did do the DBS and got it approved. He lives a relatively normal life now. Everything seems to come with risks. I saw videos where people were getting it from the CV shots. Might give acupuncture a try as well.
DBS was a great, seemingly last, treatment for me. Hope you're able to reach a good number of folks and get them in the office in a timely fashion
@@thehaircutbook Lol! Brian you were the one I was referring to that had the DBS done but had to have a couple adjustments made since you had procedure. I am still sitting on the fence with that idea. It appears the condition is becoming more and more known based on the videos I see put out there.
@@DeanBeith too funny in the sense of such a small world. RUclips does not show who I am responding to but hello DS. I remember speaking with you a few times in the past. The technology continues to improve and be under new development. On this past Tuesday I received two new batteries from Medtronic. This new rechargeable unit just came to market; it’s super thin and very quick to recharge! So DS with you being on the fence, take that step over to the DBS field. The person who posted this video highlights three negative things about DBS (Invasive, expensive, and infection)….You know me and working one on one with my neurosurgeon and neurologist plus staff locally and nationwide… I’d dive deeper on it to say the CHANCES of infection are there however single digit slim. The expense or cost of the surgery will all be dependent upon your insurance and coverage. The idea of it being invasive or minimally invasive surgery is also a thin line (The technology has advanced so far that the procedure is very controlled and done on such a micro size level with live x-ray/MRI style views of what the surgeon and their staff are doing)
In my country, Ingrezza and Austedo aren' t available. What can I do?
Same like me
PROZAC!! Symptoms Started at 50 grams
If i have tarive diskenesia, and my most of my movements are uncontrollabel tongue movements and mouth movements, will a botox injection work to stop the tongue from moving around so much? If my tongue would stop moving, i could almost feel normal again as most of the other tremors and movements in the rest of my body are minimal...my tongue does not protrude outside of my mouth, but it is consistently moving uncontrollably in my mouth and that makes the tongue tired
A very low dose of botulinum toxins injected into the genioglossus muscle might help. It has to be injected by a person with a lot of experience in the procedure. A side effect is speech problems and swallowing issues.
@@luisezayasmdpt4397 are the side effects likely to occur? I read a story about a woman yesterday that had disaastrous results when she had botox injected for migraines. If the side effects are likely to occur, it doesn't sound worth it to me at all.
The 1st and 2nd generation lists are the same.
non-medication RELATED TDK. facial eyebrows, mouth movements, and finger rubbing . mother and father experienced systems . where to go from here .
Need to be seen by a movement disorder neurologist to evaluate the possibility of facial dystonia. The treatment depends on the phenomenology (dystonia, stereotypies, myoclonus, chorea, tics, etc...). Dyskinesias means abnormal movements, which can be any type of phenomenology. Again, treatment depends on the type of phenomenology.
TD is sucking my life out of me.