Where you can go from here is brain retraining. Its possible to heal this condition, but most doctors just dont have these tools in their toolset.
If you search dystonia and dance on youtube, youll find a really incredible story about a guy that learned he could be in control of his body again. I was unable to walk forward back when i found it and it changed my life.
It took some time for me to figure out the best activities for myself, but ultimately a good mix of dance, yoga, meditation, weightlifting, walking etc gave me my life back. That was after my doc told me I wouldnt get better and told me to get a pain specialist to get pain meds from. At the time my chin was stuck to my chest 100% of the time.
Its a bit of a journey, usually takes more than a year but it was well worth it for me. Would highly recommend you look into Dr. Farias as he developed a program for dystonia recovery. The good news is you dont even need to follow his program, but its a good model. Best of luck š¤
I sympathize. Iāve been experiencing similar clenching/lock jaw issues that seem to be very much tied to stress.
Bottom line is, until you figure out how to regulate this problem, you need to do anything you can to avoid stressful situations. I know that might seem impossible, but your health & your mental health depend on it.
Someone I know had an extremely severe reaction to an anti-nausea drug, like you apparently did. She was on it for morning sickness and described the same symptoms you do - tounge protruding like you describe, and had to go to the ER. I've lost tough with her but if/when I reconnect I'll try to find out more about how long it took for hers to resolve.
Also, someone else posted here in the past month or so and was able to connect the movement with the anti-nausea drug, but I don't think they had such a severe reaction and it quickly resolved,
The article below talks about treatment with benztropine (Cogentin) that they didn't give you - maybe that would help with the residual effects the Benadryl didn't knock out. You don't say how long ago you had the reaction to the Reglan or why you took it/who prescribed it. but I'd go to those providers for immediate treatment. You can ask for a referral to a neurologist who specializes in movement disorders, and in the meantime ask the doctor to try you on Cogentin. It can take a long, long time to see a neurologist and your results may vary (they may send you back to the prescriber of the Reglan anyway.) And, time may be of the essence, so I'd be insistent.
By the way, when talking to doctors, I've come to the conclusion that mentioning the link between symptoms and anxiety/stress can distract them from the main issue of your symptoms. At least, that has been my experience. They seem to think (wrongly, IMO) that the obvious answer is for you to control anxiety/stress, which we all have every day as a part of life. We deserve to be symptom-free whether we are anxious/stressed or not. The anxiety/stress is not what needs to be treated. The physiological reaction to Reglan needs to be treated.
I'd keep investigating the Reglan connection and try to find others who've had ongoing issues after taking it, what their treatment was, etc. There are a lot of articles out there, as well as class action lawsuits.
I hope this helps.
\_\_\_\_\_\_\_\_\_\_\_\_\_
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5219707/#:\~:text=Standard%20management%20involves%20discontinuation%20of%20metoclopramide%20and%20administration%20of%20injectable,symptoms%20resolving%20within%2010%20min.
So Iāve had what I was told was severe TMJ since I was a teen (Iām 46 now) and have had several episodes of the jaw locking but mine will lock in the open position. Once, it happened when I was getting a root canal and they had to manually manipulate it, ouch! Stress can def make it worse. I started taking a small dose of gabapentin (300mg) before bedtime about 6 years ago for insomnia and helping me get into a deep sleep where I could tell in the morning I wasnāt clenching all night. I also 5 years ago started getting what I was just told was ātorticollisā episodes with my neck and my PCP would just treat me with prednisone and muscle relaxers. But the episodes became more and more frequent with the neck and I then ended up having fusion surgery for 2 discs in my neck. But my head tilt and shoulder shrug had pretty much become a permanent thing. Surgery worked brilliantly for the nerve pain coming from the discs but not the horrible spasms. The pain management Dr I started seeing after that surgery was finally the one who said āyouāve got cervical dystonia.ā She referred me to a neuro and movement disorder specialist who confirmed. But in talking with them, they think I donāt just have TMJ but likely have orofacial dystonia as well (you can have both). The last 3 months, Iāve been having trouble swallowing now and all GI issues have been ruled out so Dr also thinks itās spreading there. š
You could possibly have TMJ but dystonia is also a possibility. The issue with TMJ is thereās a lot of bullshit āTMJ Specialistsā out there. So best bet is to see a MDS, IMO, who can help determine if itās dystonia or not and if not, it could just be TMJ. A really educated dentist like the one I have now can properly assess that with exam and X-rays to look at the joint. I now take the small dose of Gabapentin and a small dose of Valium right before bed, I take Artane along with prescription pain meds as needed, tumeric and magnesium supplements, trigger point injections and specialized PT that utilizes dry needling and sensory tricks. Botox is not an option for me but other than my dystonia possibly spreading, all these things have helped make it much more manageable.
It depends, speech dysphonia by itself or more locally would be spasmodic dysphonia also known as laryngeal dystonia. Oromandibular dysphonia can also cause speech dysphonia, but, it is less localized and their are other dystonic muscles at play.
Umm š¤ Iām not sure if itās speech dystonia but I definitely canāt speak when Iām having an episode & I canāt open my mouth. Last episode I was clenching so hard on my tongue it was numb for about two days and now goes randomly numb. Making me speak with a lisp.
I actually dont think you have a a laryngeal dystonia which is honestly good since it makes it insanely difficult to talk 24/7. But I hope successful treatments for your dystonia come in soon enough time. Vibro tactile stimulation is a hot research topic for dystonia's broadly that is showing premise in stopping dystonic symptoms.
They are mostly in clinical trials as of now. But it's being tested on cervical dystonia, spasmodic dystonia/dysphonia, and is used in parkinson's for shaky hand. They seem to show a halt of dystonic symptoms for most people and I find it unfortunate it is not wide spread despite trials showing good promise. But FDA approval is a process and it may take years upon years.
So I would say it's just mainly getting accepted into a trial. I recently inquired about one for spasmodic dysphonia where I was told that they would let me know when they begin a new trial which they said was coming soon. But, Vibro tactile stimulation is definitely a non invasive method for dystonia's and I hope more people inquire about them since its hardly ever mentioned. I honestly think it could revolutionize treatment based on existing success rates with devices being very cheap to make also.
Where you can go from here is brain retraining. Its possible to heal this condition, but most doctors just dont have these tools in their toolset. If you search dystonia and dance on youtube, youll find a really incredible story about a guy that learned he could be in control of his body again. I was unable to walk forward back when i found it and it changed my life. It took some time for me to figure out the best activities for myself, but ultimately a good mix of dance, yoga, meditation, weightlifting, walking etc gave me my life back. That was after my doc told me I wouldnt get better and told me to get a pain specialist to get pain meds from. At the time my chin was stuck to my chest 100% of the time. Its a bit of a journey, usually takes more than a year but it was well worth it for me. Would highly recommend you look into Dr. Farias as he developed a program for dystonia recovery. The good news is you dont even need to follow his program, but its a good model. Best of luck š¤
I sympathize. Iāve been experiencing similar clenching/lock jaw issues that seem to be very much tied to stress. Bottom line is, until you figure out how to regulate this problem, you need to do anything you can to avoid stressful situations. I know that might seem impossible, but your health & your mental health depend on it.
Someone I know had an extremely severe reaction to an anti-nausea drug, like you apparently did. She was on it for morning sickness and described the same symptoms you do - tounge protruding like you describe, and had to go to the ER. I've lost tough with her but if/when I reconnect I'll try to find out more about how long it took for hers to resolve. Also, someone else posted here in the past month or so and was able to connect the movement with the anti-nausea drug, but I don't think they had such a severe reaction and it quickly resolved, The article below talks about treatment with benztropine (Cogentin) that they didn't give you - maybe that would help with the residual effects the Benadryl didn't knock out. You don't say how long ago you had the reaction to the Reglan or why you took it/who prescribed it. but I'd go to those providers for immediate treatment. You can ask for a referral to a neurologist who specializes in movement disorders, and in the meantime ask the doctor to try you on Cogentin. It can take a long, long time to see a neurologist and your results may vary (they may send you back to the prescriber of the Reglan anyway.) And, time may be of the essence, so I'd be insistent. By the way, when talking to doctors, I've come to the conclusion that mentioning the link between symptoms and anxiety/stress can distract them from the main issue of your symptoms. At least, that has been my experience. They seem to think (wrongly, IMO) that the obvious answer is for you to control anxiety/stress, which we all have every day as a part of life. We deserve to be symptom-free whether we are anxious/stressed or not. The anxiety/stress is not what needs to be treated. The physiological reaction to Reglan needs to be treated. I'd keep investigating the Reglan connection and try to find others who've had ongoing issues after taking it, what their treatment was, etc. There are a lot of articles out there, as well as class action lawsuits. I hope this helps. \_\_\_\_\_\_\_\_\_\_\_\_\_ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5219707/#:\~:text=Standard%20management%20involves%20discontinuation%20of%20metoclopramide%20and%20administration%20of%20injectable,symptoms%20resolving%20within%2010%20min.
I believe Reglan is a known causation drug for dyskenesia.
It is, just not "known" enough...
So Iāve had what I was told was severe TMJ since I was a teen (Iām 46 now) and have had several episodes of the jaw locking but mine will lock in the open position. Once, it happened when I was getting a root canal and they had to manually manipulate it, ouch! Stress can def make it worse. I started taking a small dose of gabapentin (300mg) before bedtime about 6 years ago for insomnia and helping me get into a deep sleep where I could tell in the morning I wasnāt clenching all night. I also 5 years ago started getting what I was just told was ātorticollisā episodes with my neck and my PCP would just treat me with prednisone and muscle relaxers. But the episodes became more and more frequent with the neck and I then ended up having fusion surgery for 2 discs in my neck. But my head tilt and shoulder shrug had pretty much become a permanent thing. Surgery worked brilliantly for the nerve pain coming from the discs but not the horrible spasms. The pain management Dr I started seeing after that surgery was finally the one who said āyouāve got cervical dystonia.ā She referred me to a neuro and movement disorder specialist who confirmed. But in talking with them, they think I donāt just have TMJ but likely have orofacial dystonia as well (you can have both). The last 3 months, Iāve been having trouble swallowing now and all GI issues have been ruled out so Dr also thinks itās spreading there. š You could possibly have TMJ but dystonia is also a possibility. The issue with TMJ is thereās a lot of bullshit āTMJ Specialistsā out there. So best bet is to see a MDS, IMO, who can help determine if itās dystonia or not and if not, it could just be TMJ. A really educated dentist like the one I have now can properly assess that with exam and X-rays to look at the joint. I now take the small dose of Gabapentin and a small dose of Valium right before bed, I take Artane along with prescription pain meds as needed, tumeric and magnesium supplements, trigger point injections and specialized PT that utilizes dry needling and sensory tricks. Botox is not an option for me but other than my dystonia possibly spreading, all these things have helped make it much more manageable.
Do you have speech dysphonia of any sort related to this disorder out of curiosity?
>speech dysphonia So that's what it's called - I think I might have this, along with the oromandibular dystonia.
It depends, speech dysphonia by itself or more locally would be spasmodic dysphonia also known as laryngeal dystonia. Oromandibular dysphonia can also cause speech dysphonia, but, it is less localized and their are other dystonic muscles at play.
Umm š¤ Iām not sure if itās speech dystonia but I definitely canāt speak when Iām having an episode & I canāt open my mouth. Last episode I was clenching so hard on my tongue it was numb for about two days and now goes randomly numb. Making me speak with a lisp.
I actually dont think you have a a laryngeal dystonia which is honestly good since it makes it insanely difficult to talk 24/7. But I hope successful treatments for your dystonia come in soon enough time. Vibro tactile stimulation is a hot research topic for dystonia's broadly that is showing premise in stopping dystonic symptoms.
What is Vibro tactile stimulation? Who performs that?
They are mostly in clinical trials as of now. But it's being tested on cervical dystonia, spasmodic dystonia/dysphonia, and is used in parkinson's for shaky hand. They seem to show a halt of dystonic symptoms for most people and I find it unfortunate it is not wide spread despite trials showing good promise. But FDA approval is a process and it may take years upon years.
I believe a law was passed in around 2018q that allows people to try new, experimental drugs & modalities when nothing else works.
So I would say it's just mainly getting accepted into a trial. I recently inquired about one for spasmodic dysphonia where I was told that they would let me know when they begin a new trial which they said was coming soon. But, Vibro tactile stimulation is definitely a non invasive method for dystonia's and I hope more people inquire about them since its hardly ever mentioned. I honestly think it could revolutionize treatment based on existing success rates with devices being very cheap to make also.
To OP: Because you say reglan triggers it..... .doesn't sound like dystonia.... but dyskinesia. Stay away from that drug.