OMGosh! I was just diagnosed with dystonia a couple days ago and so much of what you say resonates with me. For years they labeled with me anxiety and loaded me up with so many medications to try over months and years.... Phenergan, Compazine, Thorazine, Reglan, Toradol. I had a dystonic reaction from compazine and they had no clue what was happening to me while I was in the hospital. They told my husband that he should leave me, because it wasn't going to be an easy road that was almost 20 years ago! My husband almost punched him in the face. I was diagnosed with dysautonomia about 4 years ago and just started my journey with POTS, Gastroparesis, and all my symptoms associated with that. My muscles lock in my feet and ankles and I have been having trouble walking.
Jennifer Leigh WOW I'm so sorry to hear that. It sounds like you have an amazing and caring husband. I definitely got lucky when I went to the er for my compazine reaction and the Dr connected it right away. That was 5 years before my dystonia started for no known reason. I had a dystonic episode happen right in front of a neurologist and she told me it's cuz I was taking pain medication, pain medication that was the only thing allowing me to run tube feeds. She said since I was an addict it wouldn't stop till I got rehab. I've been off pain med for 2 yrs and still get dystonic episodes if i miss 2 doses of the anti seizure type medication we found that worked even while I was on pain meds. My GI was furious and sent the longest email I've ever seen him type!
Phenergan, Reglan and Haldol are a few others that can cause dystonia. Phenergan is used for nausea and sometimes in cough syrup. Reglan is used for GI problems but also for migraines. Haldol is a psychiatric medication but also used for migraine. I would stay from any of these commonly used medications, especially in ERs.
hi yes thank you for those! I've never allowed them to give me Reglan due to the high risk of adverse reactions. For a long time we stayed away from Phenergan due to my Compazine reaction but I've been able to tolerate it OK thankfully as I need it for nausea control at times when Zofran isn't enough. they use halidol for nausea control sometimes, I've never had any issues but I've had it maybe twice & it didn't help so I don't get it anymore. it's a horrible adverse reaction to end up having!
Hey thank you for sharing. I know it can be hard to talk about. Im 27 and my Dystonia was undiagnosed for years because we went to nerologists and they told me to see a phycologist. Today I had a fit and wound up on the floor before hitting my head of the floor so hard my face hurt. This disorder is not well know and I am the only one with it in my area.
Hi, i dont know if you have been given a reason for your dystonia but prochlorperazine (uk) or compazine as you call it is know to cause neuroleptic malignant syndrome which happens from drugs like this if you google it there are a lot of symptoms and it can make your dysautonomia first. P.s have dysautonomia too and a pharmacology degree. x
Thank you. I had a dystonic reaction to Compazine back in 2008 after having my gallbladder removed so I don't take that anymore. My dystonic reactions are idiopathic (unknown reason) they were triggered after I had an adrenal clash this past November. Since then I get them multiple time a day everyday. We recently found out phenobarbital would help me get rid of them. We've tried a bunch of things to get rid of it. I'm now taking the phenobarbital daily.
OMGosh! I was just diagnosed with dystonia a couple days ago and so much of what you say resonates with me. For years they labeled with me anxiety and loaded me up with so many medications to try over months and years.... Phenergan, Compazine, Thorazine, Reglan, Toradol. I had a dystonic reaction from compazine and they had no clue what was happening to me while I was in the hospital. They told my husband that he should leave me, because it wasn't going to be an easy road that was almost 20 years ago! My husband almost punched him in the face. I was diagnosed with dysautonomia about 4 years ago and just started my journey with POTS, Gastroparesis, and all my symptoms associated with that. My muscles lock in my feet and ankles and I have been having trouble walking.
Jennifer Leigh WOW I'm so sorry to hear that. It sounds like you have an amazing and caring husband. I definitely got lucky when I went to the er for my compazine reaction and the Dr connected it right away. That was 5 years before my dystonia started for no known reason. I had a dystonic episode happen right in front of a neurologist and she told me it's cuz I was taking pain medication, pain medication that was the only thing allowing me to run tube feeds. She said since I was an addict it wouldn't stop till I got rehab. I've been off pain med for 2 yrs and still get dystonic episodes if i miss 2 doses of the anti seizure type medication we found that worked even while I was on pain meds. My GI was furious and sent the longest email I've ever seen him type!
Phenergan, Reglan and Haldol are a few others that can cause dystonia. Phenergan is used for nausea and sometimes in cough syrup. Reglan is used for GI problems but also for migraines. Haldol is a psychiatric medication but also used for migraine. I would stay from any of these commonly used medications, especially in ERs.
hi yes thank you for those! I've never allowed them to give me Reglan due to the high risk of adverse reactions. For a long time we stayed away from Phenergan due to my Compazine reaction but I've been able to tolerate it OK thankfully as I need it for nausea control at times when Zofran isn't enough. they use halidol for nausea control sometimes, I've never had any issues but I've had it maybe twice & it didn't help so I don't get it anymore. it's a horrible adverse reaction to end up having!
Hey thank you for sharing. I know it can be hard to talk about. Im 27 and my Dystonia was undiagnosed for years because we went to nerologists and they told me to see a phycologist. Today I had a fit and wound up on the floor before hitting my head of the floor so hard my face hurt. This disorder is not well know and I am the only one with it in my area.
You need to get of that med!! Do some research here on utube about "benzo withdraw" it's scary stuff.
Hi, i dont know if you have been given a reason for your dystonia but prochlorperazine (uk) or compazine as you call it is know to cause neuroleptic malignant syndrome which happens from drugs like this if you google it there are a lot of symptoms and it can make your dysautonomia first. P.s have dysautonomia too and a pharmacology degree. x
Thank you. I had a dystonic reaction to Compazine back in 2008 after having my gallbladder removed so I don't take that anymore. My dystonic reactions are idiopathic (unknown reason) they were triggered after I had an adrenal clash this past November. Since then I get them multiple time a day everyday. We recently found out phenobarbital would help me get rid of them. We've tried a bunch of things to get rid of it. I'm now taking the phenobarbital daily.