The Dystonic Reaction
Some of my most memorable patients suffered from dystonic reactions. A dystonic reaction, for those unfamiliar with the term, is a reaction to certain medications, most notably antipsychotics, antiemetics, and antidepressants. The most common medications which I have seen cause these reactions are Phenergan, Compazine, Inapsine, and Haldol. Once you've seen (or had) this reaction, you will usually be able to recognize it.It often starts with a vague feeling of uneasiness, which then progresses to anxiety, irritability, and the sensation that one wants to "get away" or crawl out of their skin. Soon after an injection of Compazine, if the patient suddenly demands to leave and is pacing the room or fidgeting with their sheets, you can bet they are having this reaction.
More severe reactions include muscle spasms (which range in severity from occasional twitching or jerking to bizarre posturing and uncontrolled flailing of extremities), tachycardia, and the inability to speak properly due to facial/tongue/neck spasms.
The first time I saw such a reaction was during residency training. A woman who was on Haldol seemed very agitated and was talking gibberish. I thought she was having an acute psychotic episode, so I administered some more Haldol. When that didn't work, I consulted my attending, who took one look at her and said "watch this." Immediately after he gave her a dose of IV benadryl, she relaxed and started talking normally. It was practically godlike.
Another time, a teenager was brought in sweating bullets with his tongue protruding from his mouth, unable to speak. He thought he had bought some Valium from a friend, but it turned out to be Haldol. Half an hour later, his buddy came in with the same symptoms. Interestingly, Valium can occasionally cause these reactions too.
One lady came directly from a Neurologist's office because she couldn't speak, appeared somewhat agitated, and seemed to be retarded. That's what he thought anyway. As it turned out, she had taken a Phenergan suppository that morning. After the magic Benadryl shot, she spoke as clearly as a teacher (which she happened to be), and she asked me to call the Neurologist to come see her in the ER so she could chew him out in person. Amazingly, he showed up to take the heat.
I have actually had to admit a couple of these patients. While dystonic reactions are not really life-threatening and are usually easily reversed (or at least greatly improved), I couldn't reverse these reactions no matter how much Benadryl, Cogentin, or Ativan I gave them, and they were thrashing about so much that they were unable to care for themselves and were at risk for injury. If the reaction is not easily reversible, alternative diagnoses should be considered.
It's obviously more fun to treat one of these reactions that comes in from the street than one you have caused yourself. Unfortunately, most of these reactions seem to occur after IV administration of medications in the hospital.
posted by scalpel at 1:37 AM
90 Comments:
I've had a dystonic reaction to *Ativan* - on three separate occasions. Klonopin makes me fidget/pace/uneasy, but not outright psychotic like Ativan does.
Is that atypical, given that they use benzos to reverse it?
So if someone has this reaction to compazine, phenergan, etc...what do they take to stop severe vomiting?
Also, if they have this reaction to one type of medication, does it predispose them to the same reaction with other medications that can cause dystonia?
Curious EMT
I've seen a couple of these reactions from Valium. A reaction to one of these drugs (say Compazine) supposedly makes a reaction to another similar medication (say Phenergan) more likely, but that isn't guaranteed. I've had quite a few migraineurs who claimed previous reactions to Compazine who did just fine on Inapsine. I forgot to mention Reglan, but that is a fairly common one too.
Oculogyric crisis is another manifestation, and it really gets your attention, especially when they get opisthotonos. We used to see it a lot with compazine, especially in younger patients. This one is similar to tardive dyskinesia, with the grimacing and tongue protrusion.
I chased one down with the security guards post-migraine Reglan and gave her Benadryl in the hall (she'd received 25 of Benadryl with the Reglan already). Poor thing was so embarrassed and apologetic. She was an interesting case---had had facial numbness with migraines before, but was completely numb and mostly unable to move her entire right side when she got to us. Had fallen off a chair even. Reglan and Benadryl gave her strength enough to rip all her monitor leads off and start trying to "bust out of the joint."
So if someone has this kind of reaction to this kind of drug..give.....Zofran? Or just give 25 Benadryl 1/2 hour before giving the med that causes the reaction?
Curious EMT
I don't even know why we give compazine - it causes a lot of this stuff...I dread giving it.
Compazine is the drug of choice for migraines. I give benadryl with it, but I'm not sure that it really helps prevent the reactions.
Seems like about 20% react to it.
Benadryl all the way. I've had dystonic reactions to compazine, phenergan, ativan, and klonopin.
God bless benadryl.
*nods*
i think the only thing that approaches the immediate gratification of 'curing' a dystonic reaction is the immediate gratification of reducing a nursemaid's elbow and seeing the worry melt from the parent's faces.
Actually, while typing this, I just saw you auto-commented about Reglan. For elective surgery >8h NPO, it seems a dubious trade-off to have it per protocol so often given the frequency of rx, but I assume there's convincing data out there somewhere.
Thanks for bringing this up, if one person is saved from going through what I did, it's a good thing!
I had the unfortunate experience of having hyperemesis and a cold at the same time. OB gave me compazine for the HEG (thursday). Went to the GP the next day (fri) for the cold/sinus infection and dystonia (with my hands hiding my face because of the grimacing and tongue thrusting). Despite giving a good history including the use of compazine the GP (and the med student with her) told me the 'facial spasms' were due to a nerve being irritated by the sinus infection. So I went home and continued to take the compazine-thinking the sedative effect would help the spasms along with the HEG. The spasms got so severe that I couldn't take care of my children and could barely take care of myself-my head would turn so far I thought my neck wold break. I called my midwife begging for some sedative to make the spasms go away. She knew I was on compazine...again....didn't tell me that I was having an allergic reaction-just said sorry there was nothing she could give me that was safe for pregnancy. Not until this went on for 2-3 days did I get hold of the OB (monday) who told me to stop the compazine. Knowing now that all I had to do was stop the compazine and take some benadryl and I would have been fine really makes me mad. I was in a living hell for 3 days. Three medical professionals ALL knew I was taking compazine and not one dx'd the dystonic reaction correctly, trusting my HCP's and not being one to run to the ER really bit me that time. Needless to say I tell everyone I am allergic to compazine, my husband has instructions to throw himself in front of me if anyone tries to inject me with anything while I'm vomiting. I had surgery this past winter, I must have told every nurse, doctor and housekeeper 'DON'T GIVE ME COMPAZINE!!!"
Thankfully it is the only drug that does that to me-I'm even fine with phenergan.
--My pediatrician taught me how to reduce nursemaids elbow. Can't imagine sitting in an ER for hours with my child in pain or running to the pede for something that takes about 2 seconds to correct and send them happily back to playing. (as long as you are sure it is not a fracture of course and when child #1 was trying to pull child #2 up the stairs by the arm it's pretty obvious what the problem is)
Thank you so much for this post. I've never heard of this before, but I'm pretty sure that this is what happened to my father during a recent hospitalization. It was terrifying when it happened, but it's good to know this might be an explanation.
So that is what it was!! I was given droperidol once in the ER in order to try and break a migraine. I was pacing like crazy, screaming to go home, and was discharged from the ER. When I called back asking what I could do, they said, "nothing, just wait it out."
I have had severe inctractible migraine for 9 years now and that is the only time I have ever called my parents and begged them to come get me. (Mom, an MD was several hours away,) She came immediately and seemed to recognize it and gave me some oral benedryl,. which worked.
I never knew what it was called or exactly what happened that time, but thanks so much for posting on it and letting solve a mystery.
Anonymous Patient
i went to an er after having a vomiting and diarria fit about every 30 minutes for 6 hours. in retrospect i think the stomach flu was tapering off and had run it's coarse. i started me on iv compazine. then the hell started. the out of my skin stuff started. I started telling the doctor and the nurse that someting was wrong they thought i was full of shit. i started insisting on leaving. i thought if i could go somewhere else i could get away from the terrible feeling they got rude but finally let me go. at the discharge desk i kept saying sometings wrong i feel funny it turned out that the discharge nurse knew more than the doctor and the attending nurses she told me it was a reaction to compazine and told me to have my friend pick up benadryl on the way home. the hospital called me every hour to take more benadryl and get my status it took at least 5 hours before symptoms began to decrease it was a living hell in my head and i had no idea how to describe what was happening. i know now that 17 years ago 1 or 2 benzo's would have cut 6 hours of suffering to 30 min
I had gone to the ER with a very bad case of the flu. I had been vomiting for 3 days, so the doctor ordered IV inapsine. Within a short time, I started fidgeting and wanted to crawl out of my skin. Then it got worse. My legs cramped up, my arms went straight up in the air, my neck turned to the side so badly that I thought my neck was going to break, and my tongue thrust out. The worst part was my tongue because I started to involuntarily bite on it to where it bled! I was so frightened! Neither my nurse nor the doctor knew what was taking place. Thankfully another nurse saw me and knew what was happening. The nurse told the doctor who then ordered IV benadryl. The benadryl worked almost immediately. I was so relieved. I did have a very bad case of dry mouth from the benadryl, but it sure beats the terrifying reaction I had from the inapsine.
I had a severe dystonic reaction to Reglan. I wish all doctors (GI) who prescribe this would be more aware of this possible reaction and warn patients. My doctor told me I might have a little "muscle spasm." I was taken to the ER unable to walk or talk, while having a seizure. My throat had closed because my airway muscles were affected. That was the most frightening and horrible experience of my life. My doctor acted like I was overracting to what happened to me and said it was a completely abnormal reaction. The ER doctor said it's very normal even though mine was a bad case.
After being hospitalized with a severe post-spinal tap headache, I was given numerous injections of pain meds along with Phenergan. A few days later, I was nearly jumping out of the hospital bed with extreme fidgeting. Nobody recognized these symptoms. More injections of Phenergan were given. My symptoms became so extreme I eventually developed Parkinson's symptoms with head shaking, muscle stiffness, and trouble talking. Nobody caught on. I was sent home like this as the headache was better though they were thinking these other symptoms were attributed to the recent spinal tap (irritated meninges?). At home, I continued worsening with uncontrollable eye movements and mouth movements that were frightening. Finally, my husband drove me to a neurologist's office where the symptoms were recognized immediately and I was put on Benadryl and Cogentin for weeks. My case was so extreme I was told I might not fully recover but fortunately I did. When I later phoned the local hospital to inform them about what had occurred so that someone else never goes through such a thing, they seemed too busy to comprehend the severity of what I was trying to convey. I will never forget that horrible experience. I now avoid all Phenothiazines and make sure all medical personnel are informed of such verbally and in writing.
About 4 years ago, I experienced my first Dystonic reaction to Comtrex. I went to the ER and they gave me Benadryl which stopped the reaction until the next morning when it started again. I went back to the ER and again was given Benadryl. To make a long story short, I was 6 days in the hospital with them giving me Benadryl to stop the reactions, but they just kept coming. They finally changed to Ativan and the reactions stopped. Since then I have had dystonic reactions to Tylenol, Advil, aspirin, nose sprays, Aleve, BC Powder, and all cold meds. It is really frustrating to say the least, now that I am also allergic to Benadryl come to find out. I cannot take anything for a headache or cold. Will this ever go away?
At age 20, I suffered a dystonic reaction after three days of Navane. It was a low dosage, but more than sufficient to initiate the reaction, which manifested itself first as a rubbery tongue, and eventually, an hour later, with my head/neck swiveled completely to its full rotation to the left, and my jaw swiveled completely to its full extension to the right. A shot of cogentin relieved the syndrome about 45 minutes following administration. Until the congentin did its work, though, I felt certain my neck was going to break.
This may sound absolutely bizarre and I'm almost embarassed to tell it. I had a stomach virus that requires a single dosage of Compazine in the ER. When I got home, I felt this awful gittery feeling and to make matters worse, my mouth kept involuntarily opening. I'd close it but it would just shoot wide open again. I felt nervous, anxious and depressed. I assumed it was my mood doing its thing since I was bummed out that I not only was sick but had to go to see a Dr. which I hate! I thought if I had sex this miserable feeling would go away. It didn't, not after the first time or the FIFTH. I finally went back to the ER after thinking I was having a stroke or something. The nurse knew right away what the problem was. One shot of Benadryl did the trick. I was too embarassed to tell her that I had earlier tried to SEX the symptoms away. Don't tell anyone. :o)
I had a severe reactionn to compazine where my neck and eyes could not stop rolling back almost to the affect like i was possesed. I was givin throughout the night a total of 150 mg of bendryl because it kept recurring.
The day before my 19th birthday I had this reaction to *Maxeran*. At the time I was hospitalized recovering from a bowel resection due to a severe episode of Crohn's Disease. I was TERRIFIED! I had no idea what was happening to me or why. I had been taking the medication for a few days & had been gradually getting more and more restless & jittery. Suddenly, my jaw started to spasm & by the time I received the "magic shot" my fingers & toes were all clenched, my jaw felt like it was going to break & my abdominal muscles had begun to tighten painfully (not fun after abdominal surgery) fortunately, I was back to normal within about 20 minutes of receiving the shot. Almost 20 years later it is a great relief to finally know exactly what did happen to me & how to treat if should ever recur. I didn't realize if was such a common reaction!
-Kim
I cannot say enough, how relieved I was to find this blog and a place to comment. I recently gave birth to my 5th child in February and had a routine, repeat c-section with a spinal block. After I was taken back to my room, the nurse came in and hooked up the morphine drip and pushed a dose of Phenergan into my IV to keep me from getting nauseated from the morphine.
Please allow me at this point to stop and tell you that while this is going on I am literally PARALYZED from the spinal block and cannot move my legs, numb from the belly down, have a catheter, the whole bit.
Within a minute or two of the Phenergan dosing I knew something was wrong. I've seen it described on this page as an uneasiness, but it's an almost indescribable feeling except to say that whatever the feeling is, ISN'T GOOD! My heart-rate suddenly started shooting up, I had this feeling I needed to get out of there but couldn't move, and then came a terror I've never experienced in my life and so much jerking from my arms and head that I thought I was having a seizure except I was conscious. The nurse ran, literally, to get a doctor, and left me with the cleaning lady whom I begged to hold my hand. I had this sensation that if I wasn't holding on to someone, if I closed my eyes even, I wouldn't wake up. Within seconds the doctor was there, a pharmacist was there, three other nurses were there, and after asking me if I could stick out my tongue or if I'd ever had a bad reaction to Phenergan, Benadryl was given and I heard the nurse say, "Her heart is DOWN to 157."
The Benadryl worked immediately but unfortunately it put me completely out for the rest of the day. I gave birth at 8 in the morning and wasn't able to hold my baby (a beautiful boy) until nearly 8 that night.
What I don't understand is why I had this reaction. I've used Phenergan dozens of times over the years, suppositories, tablets, and even in my first trimester of this pregnancy, used it as a gel on my wrist with no problems. Since this episode though, I also became completely intolerant of codeine as well...experienced some near-psychosis in the first post-partum week and panic attacks for the first time ever. When the codeine finally got out of my system, I began feeling better but this whole experience was really horrible. At least now I know what to call it.
It's interesting that Valium can cause this too. I recently had a dystonic reaction to IV phenergan. I had a feeling of tightness in my calves that made me very fidgety, even while trying not to fall asleep after the phenergan. I was given Valium for it, and it worked. Hmmm... I've had the same reaction to compezine too.
I had horrible reactions to Reglan. I was put on this medicine after a horrible car accident which left me very much broken and in the hospital for two weeks. I can honestly say....the dystonic reaction was much scarier than both. I could not control my head or jaw by any means and and shooting spasms where the breaks in my bones were. It was bad.
I had a severe dystonicreaction to Reglan last night in the ER. I will never forget the feeling of "I need to get the &%$# OUT OF HERE" I felt so crazy, i have never felt such terror, and I even get night terrors that weren't like this. The body tremors were uncontrollable but it was the psychological effect that was so terrible. IV Benedryl did the trick but it took a good 15 minutes for it to really work, not 5.
I've had dystonic reactions, twice, to Reglan (the nausea medicine).
The first time, I had taken the Reglan at about 8:30AM and around 1:00PM I started to notice my face was twitching. Shortly after, within 15 minutes, my eyes were starting to drift...and all I could see was the bottom of my sight (like looking all the way up and seeing only the bottom of your eye sockets). My eyes were basically rolled up in my head. I went to get help because I was not aware of what was going on, and that is when my tongue began to swell and hang out of my mouth. Then came the muscle spasms. I was laid down on the ground, but my back was arched and my muscles were spasming. The EMT's came and I was given IV Benadryl and was fine within 10 minutes.
The second one happened a lot quicker. I took Reglan at 8:00AM and by 10:00 I had already gone through all of the symptoms. My eyes were ALL the way up in my head this time, my eyes should have just been closed. My tongue was swollen, jaw locked, tongue hanging out. My body was spasming and back was arched. But with this one, two new problems popped up...I could hardly breathe, my throat was swelling, and I couldn't feel my arms, they felt like they were floating.
I just thought I'd share my experience with you.
I just went through this due to taking Compazine suppositories for treatment of migraine. Benadryl did the trick, but I am 12 weeks pregnant and unable to reach my OB to ask if there is a risk to my baby from my having dystonia -- if my body was spasming so uncontrollably, could that also have been happening to the fetus? What are the chances of fetal damage? I am glad to see others have been pregnant and recovered and at least didn't mention issues with the baby in their posts.
I had this happen to me last night. I have been given phenegran many times before and last night, they gave me something else similar. Within 5 minutes my jaw was locked and fully extended left. It hurt so bad. I was also about ready to just run out and leave the hospital. My husband got two nurses, who got the doctor, and they gave me 150 of Benedryl. In a matter of two minutes I was fine. Except the restless feeling continued about 12 more hours. Insane. I am terrified to go through that again! Eek.
I am so glad to see there are others out there that have went through this! I have had reactions to compazine and reglan and also zofran. Now I have started to have the reaction to phenergan. I have severe migraines and there isn't much left for nausea. When I first had the reactions to reglan the stupid dr. said I was lying. He turned around and tried to give benadryl (which I am allergic to and he was told that). The nurse tried 3 times to give benadryl and I stopped her. Some of these dr's should be smacked for not listening! Anyway...thanks for letting me vent!
I never heard of this until a month ago..omg I would not wish this on my worst enamy! I am severly Hyperthyroid and went to the ER for a cyst on my ovary that was about to rupture. I'd been thru it before and knew the only way to get the the horrific pain for me was IV Diluadid and an anti nausea med.
I was given IV zofran & pain meds and about an hour later asked for Phenergan because I still felt pukey..I have taken Phenergan for 7 years everyday, no problem. The nurse as she was putting the med in my IV said this is Inapsine, we don't give Phenergan anymore.
Like 2 minutes later I knew something was horriby wrong..I was twitching and shaking and felt like I was going crazy..and then to my horror I realized I could not speak! My Nurse thought I was cold and covered me in a warm blanket. The Dr even checked on me and sent me home..I was so out of it I just thought I was reacting from the pain..
When I got home hubby had to carry me into bed and looked at me funny..he watched me for a few minutes and asked me something..I couldn't answer..he then held me and asked is something wrong..it took him asking 4 times and I was finally able to nod and give him a pleading look and hope he got it..he did. He called the ER and the Nurse that answered knew right away and told him to take me back there NOW.
All beds were full so they had to put me in a chair I could barely stay in then I was given IV Benadryl,it slowed the shaking about 50% and I could say a few words. They sent me home and I was still feeling like I was going crazy..it had to be the worst feeling of my life!!! After 48 hours I was able to walk and I could not sit still for 12 hours after that..I paced the floors until I was so tired I literally fell down. I feel into a deep fitfull sleep for 3 more days after that with hubby waking me up to feed me more Benadryl every few hours. All in all in took about 7-9 days before I felt normal again. Guess I had a worse case than most.
Son is on meds which now include Navane for symptoms which have been described in some of your postings. My question is this, Can it be a dystonic reaction without the swelling of the tongue. He has the corner reaction and tends to pace within an hour after taking his meds.
Yes, it definitely could be.
I've been taking ativan for bronchospasm for a few years now. My pfts look okay, I still have asthma symptoms, but have developed an overall weakness of especially the upper body ie; arms. I feel to tired to brush my teeth at night and use my asthma puffers in the morning. I've even taking to using low doses of advil and 5mg of vicodin when I can't get relief along with the ativan.
Due to a unknown unique condition I can not use beta agnoist because the theory is that they give me complex migraines (causing paralysis of small areas to full limb parlaysis including neck, arms and legs for 1 minute to 5 hours). I see a neurologist and a pulmonologist and am being tested for mitochondrial disease, RA factors, HIV, lead, etc... anything they could think of. I've taken a disability retirement from the school system that I developed asthma from after mold grew rampant in the basement during a summer I worked in the school office. I truly feel I will not live to see my first grandchild born in July 2009, I grow so weak physically and disoriented mentally. could this bethe dystonic reaction??
I've had dystonic reactions to all sorts of meds (mostly Compazine.) So I knew exactly what was happening when my 10 year old's eyes started rolling back and her upper body jerking. I gave her Benadryl ASAP. They reduced her dose of Zyprexa but it's still happening. Her psychiatrist said it's time for a neuro consult in case it's not medication induced. Oh, no! I never thought I'd pray for a simple dystonic reaction.
I had a severe dystonic reaction to metoclopramide, which was injected intramuscularly. After a few mintes one hand went tingly, then the other, then I became concerned and started sweating profusely, then both hands turned into claws, then my face went rigid, then rapidly my whole body went into complete spasm, and a deafening buzzing sound went through my ears the entire time this was happening. Essentially every muscle in my body became flexed and rigid - clawed hands ending up near my ears as my biceps won out against the triceps, legs and toes pointing straight as the quads won out of the hammies, and my back slightly arched up from the bed. I couldn't talk, and my breathing became more restricted as my chest and diaphragm were tensed up completely. I've never had an emergency medical condition in my life so this was extremely shocking. Plus the doctor wasn't sure what was happening which was frightening. She injected me with Diazepam intravenously and after 5 minutes I was completely fine. Euphoric even - due to a combination of the Tramadol getting rid of the pain I was in beforehand, and the adrenalin coursing through my body since I was completely convinced I was about to die only minutes earlier.
I also experienced this weird reaction after going in for a migraine. The Reglan helped the headache, but then I started pacing and telling everyone that I couldn't stay there because I didn't know them, etc. Also, any surgeries I had prior to this, I had Reglan with the anesthesia and always woke up disoriented and crying. The one surgery I had without Reglan, I woke up normal.
As I type this my 6 year old grandson is in the ER. The doctor told my daughter they thought his jerking and twitching was a dystonic reaction. Everything I have read here says it is a reaction to medication. He is not taking any medications. He came home from school doing this jerking today. does anyone have any ideas of what else may cause a dystonic reaction other than medication. Thanks
Click on the link in the first sentence of my post, go to the bottom of the page, and you will see another link which lists some differential diagnoses.
Basically electrolyte problems, seizures, or infections.
I have had a reaction like this to Maxalon (an australian anti-nausea medication) while I was being treated for severe nausea due to a kidney infection.
It began with my face screwing up uncontrollably, like I had been sucking lemons, and my eyes rolling up uncontrollably. Then my hands began to creep up towards my torso and my fingers buckled and stuck. Eventually it spread to my entire body, legs, neck and back. It was one of the most terrifying things I have ever experienced, I could not move, my entire body was contorted (as I have seent he bodies of people who have cerebal palsy) and the pain was terrible. I was rushed to the medical centre by my workmates, and the doctor gave me an injection, which began to very slowly relax my muscles. After about forty minutes I could finally move, and had to walk home from the centre (usually a five minute walk, thoguh on this day it took about half an hour).
I avoid all anti-nausea medications as a rule, just in case, I woudl never want to experience such a thing again.
After tearing my ACL i had surgery and they gave me compazine for neausea. I stayed the night in the hospital and was fine. It wasnt until 24 hours later the reaction started. It started at my toes and went up my body. I had no control over my body and my eyes rolled back, fingers spread apart and i felt as if i was swallowing my tongue. It looked like I was having a seizure. About 5 minutes later i couldnt move, talk or do anything. I had to be carried down the stairs and was rushed to the ER. I was put into a wheel chair and the doctors thought i was mentally ill. My parents had to scream to get their attention.10 minutes later they realized what was going on and gave me Benadryl through an IV. 2 minutes later my whole body felt like it had 200lbs lifted off. They say having this sort of reaction and your muscles tensing up its like working out for 4 hours. It was the worst experience ever. Once they believed they had it under control i was able to leave.45 minutes later it happened again. This time i was able to catch it before i wasn't able to walk. This time it started with my jaw and went down my body. I was once admitted to the ER and they had my stay the night. I was given Benadryl through and IV the whole night and was monitored closely. Please do not take this. 4 years later i am still suffering from side effects.Because i was given Compazine in such a large dosage it has began to slowly effect different organs of my body. I am only 23 and i have huge intestinal and colon problems and am on the verge of liver disease.
Comment and question:
I've had a couple of severe dystonic reactions to Compazine, both of which were relieved by diphenhydramine. The first time it happened I was still in the hospital, so they were able to push 25 mg of diphenhydramine in my IV. I must say, I've never slept better. The second time, I was home already and my mounting uneasiness suddenly transformed into the urge to move, somehow, anyhow, fast. I wound up falling off the elliptical trainer (nice choice, I know) and spraining my ankle. I called the ER from which I'd just returned.
Me: "Hi, I was just there and you gave me Compazine, and now I feel really weird..."
Doc: "Yeah, that happens. Do you have any Benadryl?"
Me: "Yeah."
Doc: "Take two. If it wears off and you still feel weird, take two more."
Me: "Okay, thanks."
Here's the question: Currently, when listing my allergies, I give two: sulfa (severe hives/throat swelling) and Compazine. I was assured that the sulfa reaction is truly an allergy when my PCP looked me straight in the eye and said, "You should never have this again." After reading all the blog posts about what is and isn't an allergy, I wonder, should I list the Compazine?
Missy, I had the exact same thing happen to me 2 days ago. Every symptom you described was mine. The day it happened I had a terrible migraine and I took a Percocet. I've looked all over the internet and haven't seen anywhere saying that would cause this reaction. I have epilepsy so I don't know if that had something to do with it. I went to an urgent care center first and the doctor said I was have severe anxiety attacks, prescribed me Xanax and sent me home. The Xanax didn't work. I thought I was literally going to die so my mother took me to the ER and they gave me IV Benadryl. That helped somewhat. Then they administered 2 mg IV Valium. In 30 minutes all my symptoms were completely gone. I still don't know what caused it. They gave me a prescription for the Valium and I've been taking it twice daily because I'm so scared it will happen again. I've taken Phenergan before and never had any sort of reaction like this. I had blood work done 4 days ago at my neurologist and my Lamictal levels were really low. I'm so confused as to how this happened. It had to have been the Percocet because I have no other explanation. Obviously I'm NEVER taking oxycodone again. I would never wish this on my worse enemy. I'm just wondering if anyone has had a reaction to oxycodone like this before.
I've had a dystonic reaction twice. The first time I went to the hospital for numbness in my legs(which was later found to be a blood clot). I informed the nurses upon checking in to the ER that I was on Bromocriptine for hyperprolactinemia and that I was allergic to sulfa drugs. While there they did the routine tests plus several more and didnt see the clot or anything else for that matter. So the nurse came in and said she was going to give me morphine and phenergan for numbness, get that? I had never had either by the way. I was instructed to call my husband to pick me up and did. I went to sleep shortly thereafter. By the time my husband got there and I was waking up I had started this nervous twitch and my heart rate was 150+. I explained to my husband something wasn't right and he called the doctor in, which by that time was another shift. He had no clue what was going on and tried to discharge me. Upon my refusal to leave until they got it right, he tried to discourage me by saying that he would have to start all over as if I had just come in bc it was a new shift. I told him I was more than willing to do that. They gave me more morphine and phenergan to so call calm me and lower my heart rate. I was asleep through all of the tests and when I awoke this time it was the next morning and I had been admitted to the hospital. In short I remained there for two weeks. The first portion they basically called myself and my whole family liars by consistently asking if I had any psychiatric issues and little to my knowledge had been giving me Haldol they said to calm the anxiety attacks that they said I was having, this new medication further added to the dystonia. My husband pitched a fit after the last staff member came in and once again asked if I had any psych issues. It was so frustrating having them look at me, a healthy 25 year old, as if I was mentally ill!! They continued to administer the meds that provoked the reaction the whole time, until I finally started to refuse them. Right before they found out what the problem was my husband and mom left to go home and freshen up, while my aunt stayed by my side. I got up and went to the restroom and upon coming out, my whole left side locked up and I was literally dragging myself to the bedroom. My aunt was reading the paper and didnt notice. I drug past her and got to the bed where I leaned over, took the phone off the hook and laid it on the bed and proceeded to call my husband. I explained to him that I thought I had a stroke and I needed him and my mom there immediately. I shouldnt have to say he was fuming when he got there and by that time my aunt saw me falling on the floor in tears with my arm stuck against my chest and my tongue curled out of my mouth and twisted to the right side. She called in the nurses and they were trying to give me aspirin and my husband was like no unhook her, I'm taking her to Birmingham, AL because apparently you all are incompetent. They then called security but not before my husband called my father in law who is quite the business man and normally gets questions answered!! As my husband was in the hall with security my father in law got there and I was taken for a MRI. I didnt know by this time that my father in law had cornered the neurologist that had been called in and was demanding answers and a list of all the meds I was taking and had been given! It was then that the doctor saw what a screw up the hospital had made and informed them to give me Benadryl intravenously. When I woke up from the Benadryl the twitching had stopped, I could feel my left side, and my tongue and voice were back to normal. After about two days of Benadryl they finally got down to my initial complaint and took me for an ultrasound of my legs where they found the clot!! I was like I had to go through all that to get back to square one!! It was truly a nightmare unlike anything I had ever experienced. I am now on Coumadin for the rest of my life for clots bc I did have a recurrent one in my lung bc the same hospital discharged me without putting me on any meds for the first clot. As far as the second clot I refused to go the same hospital and ended up having much better care at another local facility. Due to the fact that it was negligence on their part I still have to answer questions about that episode to this day. They tried to sweep it under the rug and never admitted fault! The second time I was given Mepergan for migraines and had the same dystonic reaction and went to my pcp and she immediately gave me a shot of Benadryl and told my husband to go purchase more and have me take it as prescribed and the side effects immediately dissolved. I said all that to say you pay for your medical insurance or if you dont have insurance you are paying these medical practitioners and you have every right to demand the service you are due! If it doesnt feel right then most likely it isnt and you dont have to settle for anything other than the best. My only regret in this whole situation was not going after them for the pain and turmoil they caused me and my family and to think that they added insult to injury by calling me crazy! I've heard of people suing for less! There are also sites that you can go on and check to see if two drugs will interact badly with each other before taking them. I say this because you cant rely on doctors or even pharmacies to give you accurate info all the time. The second incident with the Mepergan I made sure to ask the prescribing doctor and the pharmacy if this would have any adverse reactions with anything else I was taking only to be told no by both. I took the meds thinking that info was true and had the second reaction. After returning from my doctor I went online and put in the Mepergan and Bromocriptine and Coumadin and found that the Mepergan and Bromocriptine were not to be taken together and I also checked phenergan and it wasnt supposed to be administered with Bromocriptine either. The mepergan also contains phenergan. The reasoning is Bromocriptine works on the release of Dopamine and Phenergan is a Dopamine blocker so it was like I was literally having a war between the two medications in my head. Needless to say none of the staff was knowledgeable of this interaction! So basically I shout to you DO YOUR HOMEWORK & STAY INFORMED, DEMAND ANSWERS, NEVER SETTLE FOR LESS! I hope this helps someone avoid this same nightmare! Sorry for the length but I felt all of it was important for you to know!
If there is anyone that is suffering long term effects from a dystonic reaction... read this.
I had the worst possible dystonic reaction... my whole body was a mess, and I nearly died from a heart attack during the episode. I continued having dystonic reactions for a YEAR after the initial dosage of Reglan and Demorol. I was in a wheel chair for the longest time as my leg muscles were disfigured from the convultions, and no amount of physical therapy worked. I had the distonic reaction when I was 17 and was not completely rid of the dystonic reaction until I was almost 19.
I'm 22 soon to be 23 now, and I am completely healthy. What did I do to get better? I started seeing a holistic health doctor, one who practices Neuro-link and NMT. I was desperate to live a normal life, and I was willing to try anything. It worked for me, and my doctor's success rate is about 95%. I had nothing to loose except my pain and my 20+ pills a day to be somewhat functional.
If you're desperate to get better because you are still suffering, look up alternative holistic therapy and Neuro-link providers in your area http://www.neurolinkglobal.com/search/index.asp
Try it, it worked for me 100%.
Selah Guerra
I've had this reaction to a medication (Haliperodol if I remember correctly) when I was in hospital, and had it a further 2 or 3 times, despite them knowing that I obviously have an allergy to it.
I can't help but wonder what kind of messed up shit this does to the brain, but my jaw and neck spasmed and clenched, it can't be good. Hard to descibe excactly what it feels like, it was just so painful and uncomfortable.
One time I was an out patient and I took the medication and had to go in to hospital, felt like my jaw was going to break, and the doctor at the ER gave me an injection of what I believe was a simple saline solution, and it relieved me of the disturbing discomfort almost instantly.
They should seriously stop making these medications. No one should have to suffer that. I'm sure there are alternatives which don't have such messed up side effects.
Either Haliperodol or Droperodol, not sure exactly, but it had perodol in it.
My son who is 19 is going through this right now. He started taking Lexapro and four days later started shaking real bad and was confused and couldn't seem to wake up. We've been to the ER four times this past week. They started him out with benadryl and a cogentin shot but when the cogentin wears off he seems to start up again. They put him on valium. We went to see his regular doctor who said it was a reaction to Lexapro 10mg. And to stop taking it. Which he has. He also put him on valium 10 mg every 6 hrs. and tramodol 50 mg with 1000 mg of tylenol every four hrs. He seems to be doing better, but says he he still having muscle pain and from all the meds he's been drowsy and confused. His doctor said it would take 5 days to get completely over this but should feel better within a couple of days. This has been scary for the whole family. We were so afraid he was going to have a seizure and he looks like someone who has parkinson's. He has had kidney stones in the past and says that thiis has been 10 times worse. But with every ER visit we kept asking when will this end and they could never give us an answer, which has been scary. He stopped the Lexapro , but today seems better. But still has a little shaking and feels pain from his muscle movements. I'd never wish this on anyone. I just wonder if anyone has heard of this happening with anti-depressants ? And if so, what do you take if you need an anti-depressant?
The dystonic reaction is a terrible terrible thing to go through, and my experience was made much WORSE when the triage nurse in the ER at the hospital I went to told my husband AND my best friend who were with me that I was "doing it for attention"!!!
Fortunately the ER doc knew exactly what to do and I was normal within an hour.
I had this reaction a year ago. I took Compazine for a migraine. I was at work and all of the sudden I couldn't sit still. I went home and the feeling worsened. I was pacing the apartment for hours. I tried showering, watching TV, nothing would calm my nerves. I laid down and tried to cry and I couldn't even do that! I finally drove myself to the E.R. and brought with me the entire bag of what my Dr. had given me that day. Right away the triage nurse pointed out the Compazine. She told me that I was having a dystonic reaction. She tried to get me to take some Benadryl by mouth and have someone drive me home. Since I drove myself I just told her that I'd take some Benedryl at home, though I still got stuck with a $300 hospital bill for nothing! Long story short-as soon as you get the signs, go to the hospital! From reading these previous posts I did not have a reaction as bad as it could have been. But being restless, irritated, and feeling like I wanted to peel my skin off was awful. It did not go away for about a week after that. I am now fearful to take my prescription of Phenergan because of this episode. My doctor tells me that it shouldn't be the same but I'm terrified of a repeat!
"It's obviously more fun to treat one of these reactions that comes in from the street than one you have caused yourself."
I have suffered from a dystonic reaction caused by droperidol. I take offense at your use of words calling it "fun to treat" in any situation.
I acquired a bacterial infection after traveling to South America. After having a temperature over 106 degrees F., and having diarrhea for a week, the doctor administered droperidol to ease feelings of nausea.
I'm not sure how long I laid in the hospital bed, thinking I was going insane. I remember someone coming in and vacuuming, but feeling so ashamed that I was insane that I couldn't talk.
I hallucinated animals appearing from the wallpaper which was plastered in the room.
Finally after a few hours of complete agony my father came in and noticed that I wasn't responding what so ever to him.
The next thing I remember is ten people surrounding my bed, fumbling through a book to find a drug that would counteract my dysphoria.
Anyways, you should think of your patients as people, not labrats that you can be god with.
Making people better is fun, although less so people like you.
I had a severe dystonic reaction to Compazine recently in the ER - I was there due to a kidney infection (I was also vomiting). I'm a grad student in psychology, so I've read about dystonia and how frightening it is, but I never expected to experience it myself. The thing that frustrates me is that when I was given the drug I wasn't informed that it is an anti-psychotic that is also used for nausea. If the nurse had told me that, I would have declined it. The restlessness/spasms were terrible, but nothing compared to the absolute, unbridled terror I felt. Two weeks later and I still don't feel normal yet - I continue to clench my jaw. Is it normal to have residual effects like this? Should I see a doctor? Any advice is much appreciated.
When you were vomiting uncontrollably and you had not previously personally experienced the dystonic reaction, would you REALLY have refused a medication that is clearly proven to stop people from vomiting?
I doubt it.
Wow. Yes, I would have. I would have asked for something else, like phenergan, which I've had before without any problems. The dystonic reaction was worse than the vomiting, and as I stated I'm worried because I still seem to be having residual side effects.
I've been reading and enjoying your blog, but I don't understand why you had to take that tone in your response. I was just looking for some guidance from someone who seemed knowledgeable and compassionate. I'm sorry that I offended you.
Liz in TX
Phenergan causes dystonic reactions too.
Sorry, but I just hate ex post facto reasoning.
Hey, I thought you were a doctor, not a lawyer. :)
Liz
I have had dystonic reactions to Compazine, Reglan, Phenergan, Haldol, etc.. all of them give me the crawling out of my skin, gotta LEAVE RIGHT NOW feeling. And still, when i go to the ER to have my migraines treated, they still give these medicines to me. The last time they gave me Cogentin first then compazine, I still got the reaction just as bad!!Benedryl does nothing for me also. Did you know benedryl, if given to much will make you hallucinate? Why won't the doctors listen? I refuse to be treated for migraines anymore. If my maxalt does not work, tough cookies! Its way better than the reaction
I have seen one perosn say they have had rx'n to 10 mg Lexapro. Just wondering if you have heard or seen any rx'n to Provigil. My son was on Provigil when some of these symptoms occurred and I have a friend who just started Provigil and is seeming to have a similar reaction.
Since I didn't see the meds my 10 year old son just had a severe distonic reaction to I thought I would post his story for info.
Last week my son was admitted to the Mental Health Center here for Emergency Medication Management due to agression. He has ADHD ODD and IED. He was on 70 mg of Vyvanse along with 50 mg Morning, 50mg afternoon and 200 mg of Serequesl at night. They stopped the Serequel and put him on his 70mg Vyvanse in the morning along with 7.5 mg of Abilify in the morning and 0.1 mg of clonadine at night. He stayed for a week before stable enough to go home.
While visiting him 5 days into his stay he was smiling really big and telling me "I can't help it" and covering his mouth. I thought that he was just feeling much better and meds doind a really good job and he was embarrassed to be smiling so big. lol. Little did I know.. or they know for that matter.
Then Yesterday, 8 days post new meds, his teacher called me at the end of the day saying that my son was crying and holding his neck with head to one side. I talked to him and he said he woke up that way and that it kept happening. I assumed he slept wrong and when he turned a cretain way he'd get "stiff neck" as we've all probably experienced.
At home that afternoon he started screaming outside "I gotta lay down!" And run to his bedroom. I still hadn't thought anything was wrong. Gave him an ice pack to hold on it and comtinued the evening.
Around 7pm he was outside with his siblings and started screaming again. I walked outside and he was totally in a disfigured position, neck,head all the way to the side, butt stuck out in the air, back arched, arms curled up to his body yet while standing up. That's when I knew something was wrong. He laid down on the ground by the time I got to him. I took him to the ER (In the car he stopped as he was laying down) Walking into the ER again, starts screaming hands came up to his chest curled up, back arched, head to the side, and a big grin. I hate to put it this way but for recognitions sake for someone, he looked like he had Cerebral Palsey (sp) but standing up. I said "Someone help my son!" and they immediately took him to the back dispite the packed waiting room and gave him IV Benedryl. Within 5 min he had stopped.
I've went back to his original Vyvanse and Serequel with Benedryl every 6 hours until we see his Psychiatrist (The one trained in his care). I'm hoping this is the right thing to do as the ER is just there for the "Emergency" not the long term care. I saw a few posts up scolding the Dr for feeling it's "fun" to treat patients. I like that a Dr finds caring for patients fun. He's probably more fluent by doing so. I'd hate to have a Dr that didn't enjoy his job.. I guarantee you would recieve horribe care. Scalpel, enjoy your fun (wink)
Excuse the long post, I hope it will help someone else recognize the signs in a child.
Anonymous Mom
Thank you for this post.
After I had a reaction to compazine -to stop severe vomiting- with jaw, neck and facial spasms, the doctor finally figured out what was wrong. The nurse just kept telling me to stop making faces. I called a friend while I could still talk and begged for help. She got the doctor to come in and see me. They discontinued the compazine but no Benadryl was given. I could not sleep even with sleeping pills for 3 days I paced the hospital -I signed my self out. I found the paperwork at a later date and have no memory of it and the signature barely resembles mine.
I was starting to think I was going crazy at 20!
My husband had went to er for kidney stones, they administered phenergan w/pain meds, he was released from the hospital, he went to bed when he got home, in about 30 min or so he woke saying that he was having horrible pain in his shoulders and neck and thought he was dying so i rushed him back to er, the nurse i guess thought he was trying to get more pain meds, so she put us on the pay no mind list until he could not take it anymore, he couldn't speak clearly because his face was contorting and the nurse started laughing, his arms would jump and he couldn't even talk, I begged her to stop laughing and get a doctor, she did, he came in diagnosed him as having a dystonic reaction to phenergan and said he could stop it immediately with benadryl, we were so releived, he administered it and nothing, then they tried valium, that did nothing, then something else, nothing was working - we were panicking they didn't tell us what was going on until he was released the next day, they had to eventually give him morphine to knock him out, while he was out his heartrate was over 200, when they told us how common this was, we were shocked, and can you believe how unprofessional the nurse was laughing in someone's face that is convinced they are dying, i will always regret that i didn't report her to the nursing board.
I am so happy to have found this page. Last year I had knee surgery and with Vicodine making me sick they told me to take my compazine that I have with it. I have compazine to take with my diludid as I have a kidney disease. Almost immediatly I knew something wasn't right. I felt really weird. I went in to take a bath to try to get rid of the feeling but it didn't work. I then called the dr back and he said he would call me in some medicine that should work but I had no way to get it as I had just had knee surgery. Withen minutes I had to call an ambulance as I didn't know what was going on but I felt like I had to get out of my skin. What an awful feeling. While at ER they recognized the symptoms and gave me some benedryll. It helped some but didn't take away all my anxiety that I had with the feeling of needing to crawl out of my skin. I came home and continued to take Benedryll. After about 36 hours I felt much better but those hours were the worst time of my life. I couldn't describe it any better then to just say I felt like I had to get out of my skin. So scared to take medicine now as that was a terrible feeling.
My son just suffered from his second dystonic reaction. Both reactions presented that same way. He appeared to be looking up at the cieling and couldn't focus his eyes straight. It was extremely scary!! The first episode was caused from Zyprexa and the second from Thorazine. I hate that he has to deal with this along with everything else his poor body must be going through from all these meds. He is only seven and cannot quite explain what he is feeling. After reading about the other sypmtoms, I can't imagine how long he has been feeling "out of control" prior to these "extreme reactions". My poor baby.... best wishes to all you out there!!
Its surprising to see all this talk about dystonic reactions and many medications mentioned, but that no one has yet to mention the Beers List. It's also interesting that some of the medications listed on this list are used to treat dystonic reactions of others (Benedryl). It's also amazing in my research that many GPs don't follow these guidelines, or even keep what the Beers List is about in mind when prescribing.
Any thoughts or concerns about the H1N1 vacine for those with dystonic
reactions to compazine. GB reaction is very rare but so is dystonia
My 13 year old daughter started having a viral headache on Feb 11th. On Feb. 15th she had a CT scan and was adminstered IV phenergan and benedryl, with no reaction. After a couple weeks of having been administered additional tests:MRI, MA, blood work...all resulting in "normal results", the neurologist prescribed a steroidal 6 day pack. Still no change to her pain. On March 1st, she went to the ER to receive an MRV test and was administered an IV solution of 10mg Compazine, 25mg on benadryl, 30 mg of Toradol. Upon administration, I immediately noticed her anxiety and restlessness. She said she felt like she was going to jump out of her skin and wanted to get out of the hospital. They discharged her that evening, but we have seen a change her personality. She is very moody, afraid to go to bed and seems to be suffering some depression. THis is not the same child. Here we are a week later and the restlessness is not as severe, but the depression seems to be getting worse. She is deathly afraid to go back to the ER. Would benedryl help? Accupuncture? Headache gets progressively better, but the progress is so slow. The neurologist put her on Elavil the night when she came home from her horrific night, but we took her off since her anxiety symptoms started the same day. We, together with the neurologist, are trying to eliminate all things . Don't know what today will bring. HELP!
Just the typical Compazine reaction here. I'm a severe Migraine sufferer. When my meds didn't work, I was off to the ER. They gave me an IV and I couldn't wait to leave, which was odd. I almost wanted to rip it out. Then I felt uneasy...real uneasy, on the trip home. When we got back, I began pacing nervously up and down the driveway. Then suddenly, my arms began to move out of control. I couldn't get them to stay down. Then there were issues with my neck. It became locked in one position. I tried to lay down because I didn't know what it was and hoped to sleep it off. When I woke and it was worse, we returned to the ER. A couple of ER staff looked at me and didn't know what it was. They had me sit in the waiting area for about another hour and a half before taking me back. That's when I finally met the nice lady with the Benadryl. Within about 20 minutes, it was bye-bye bizarre symptoms. Now I have to carry a note in my wallet stating NO COMPAZINE. It's bad stuff, but so are migraines.
I'm 20 years old and was in the hospital yesterday morning for a severe headache. They gave me Reglan, Compazine and Dilaudid as well as Toredol. It didn't hit me right away, but mabye half an hour later I was in severe pain have neck and back pains. My neck was twisting and my eyes were rolling back. The nurse knew exactly what was wrong and gave me 50mg IV benadryl and I felt so much better and could talk. I didn't feel 100%, but a lot better. They then gave me dilaudid again for the pain and about a half an hour later is happened again. The doctor gave me 25mg of benadryl this time and said he was discharging me. I was scared, but am home now. It hasn't happened again, but i still feel uneasy and pace around my apartment some. Hot showers seem to help with the achy muscles. I'm now just taking 25mg oral benadryl every few hours.
I wish everyone the absolute best. This was not a fun experience to go through.
Ashley
Oh goodness I thought I was the only one who had these reactions...I had an allergic dystonic reaction to a combination of compazine and buspar (for anxiety). Knowing what I know how, how COULD they prescribe those two together?
Anyway...I had no idea what was happening and it was the most terrifying thing in my life. It's been more than a year and I still have nerve damage in my neck from the severe twisting that occurred and I live in constant fear of another episode....no reglan, compazine, buspar, etc for me!
I had dystonic reaction. I was giving compazine and benadryl in the ER for migraines and I was released less than a hour later but I felt so weird before I left and all they said is that you will sleep it off. I felt like I wanted to pull my skin off. I was pacing, anxiety, jittery, I couldnt sleep, eat I felt like I was going crazy. I called the next day and they kept postponing answering my questions till I had my mother drive me to the ER to get a copy of my records to see what they gave me and I begin to research it. The next day I went to my dr and he gave me 3 xanax to stop the jitterness but basically it took me 2 weeks for the symptoms to almost go away but now Im just so scared because I felt I wasnt going to get any better or this would be permanent. I was told to list Compazine as an allergy and not to take it again. I guess Im just still scared because Im wondering when will I feel completely normal. Its been 2 weeks and 2 days and I still dont have my complete appetite back. I lost 7lbs and Im already a thin person. Im healthy and to have this happened to me is so scary.
I've been to the ER three times now with my 14 year old daughter. They diagnosed her with a dystonic reaction to Day Quil. It has been 7 days now and she's not better. The Benadryl worked for awhile but we couldn't back off the dose at all and then it stopped working so they gave her 1 dose of Adavan, which made her loopy but stopped the tix and tremors, but wouldn't give her a prescription. Now it has started up again. I guess my question is how many doses does it take of the meds. or how long before she will be back to normal?
to my dismay I had a reaction to compazine pills given to me for a severe kidney infection that I thought was the flu for several days. So I was so sick that it was the first and last time I didn't read the drug insert before taking the meds prescribed. It started slowly with lip retractions, kinda like Fireman Bill from the 90's comedy days. It progressed as the drug built up in my system. I then had tension in my jaw that made me feel like I couldn't control it. By the time I left Father's day at my boyfriend's parents party it was full blown thumbs behind the teeth to keep the jaw open and not so far to one side I was biting my cheek and drawing blood. I was driven to the ER and was crying in pain before they decided they would take me in to see what might be the matter. I was glad the nurse asked all the right questions and I didn't quite remember at that point the name of the drug but she guessed and I confirmed and two sicks in each buttock and I was golden :)
I thank you from the bottom of my physician's heart for getting this info out. Many, many years ago I had a terrible bout with post-surgical emesis following what was supposed to be a relatively minor procedure (RK surgery). Fentanyl had been used for induction. The complete 'idiots' at the out-patient facility gave me several amps of Narcan as well as I.V. Compazine to ameliorate the emesis as I was 'undoing the surgery' so to speak.. What followed was the most frightening experience of my life.I'm not kidding; I begged them to just kill me and end it all.Symptoms followed for one week.
Of course, the usual wagons circled and it was nobody's fault excepy some 'idiosyncrasy' peculiar to me. Please, please, please: continue to get the word out on things of this nature!!! Believe it or not, I have had medical personal tell me that, "nobody has reactions to Compazine". I now know that they are so very, very WRONG.
I have never heard of a Dystonic reaction until...I recently went to the ER for severe anxiety and panic attack issues. I was given an injection of Ativan and Compazine. I was fairly normal for about 30-45 min. As I was leaving I told the nurse that attended me that I was still very anxious and uneasy. Her response was "give it time and you will feel better". HA!!! About 20 minutes later I started to feel cramping in the area just above where the injection was given, and it spread throughout my entire body, I was completely helpless, so I called 911 and said I was having a stroke (I wasn't sure what to say) And then it got so severe I could not speak, I had no control of my body, I thought I was having a seizure due to benzo withdrawel, which WAS NOT THE CASE. I got to the hospital and they immediately did an EKG, no problems there they said other than my pulse was 167!!! So after about an HOUR of being completely terrified they wanted to do blood work but could not due to the fact that my whole body was completely uncontrollable. At that point they gave me Benadryl and Adivan. It literally took maybe 20 sec. and I was 100% normal, it was a god like act. The doctor on staff said he hasn't seen a Dystonic reaction in about 5 years!!! Anyways i'm now terrified of any anti-nausea meds. I have taken Xanax for years due to my panic attacks without any problems. It's been about 6 days since the incident and I'm terrified of it happening again. I can definately say it was the WORST feeling of my life. I will deny any anti-nausea medications. I would rather throw up for a week!!! Thank you everyone for your horrifying stories and I hope this will never happen again.
Had my first ever dystonic reaction. It was a reaction to suppository compazine. My Dad rushed me to the ER because my feet had curled over, my arms were 'stuck' and my jaw nearly dislocated itself. I had to bite down on a towel until my gums bled, just to provide some kind of relief. I was given two I.V's of Benadryl (spasms gone within minutes) and have been on Benadryl round the clock since. I keep feeling twinges like it's coming again. But I am optimistic that another 48hours of Benadryl will get shot of this for good. What started as stomach flu resulted in one of the scariest and most painful nights of my life.
I had a dystonic reaction to Reglan last night in the hospital. I am 12 weeks pregnant and went in for an alternative to my zofran so I could get some relief. About 10 minutes after the reglan was in my IV I started feeling hot and was having cold sweats. I got extremely uneasy and could not stop moving around and did not feel comfortable there. Then my tongue felt swollen and weird and I could not talk properly and I felt like I was not breathing correctly. Right after that my jaw had a spasm and went sideways and I could not move it back. It happened one more time. It was so extremely uncomfortable and the pain was terrible. They gave me benedryl. Today my jaw hurts so bad and my cheek is still very numb. I was so scared. The doctor seemed very scared as well and he really didn't know what to do at first. I am glad I know now what happened and that I will be okay but it was the scariest thing to ever occur.
I've suffered with chronic cervical dystonia for 6-7 years. I've been on Klonopin, Xanax and had (not always successful) but always expensive Botox treatments. This is the first I have ever heard that Benadryl can reduce or get rid of the symptamology. I'm shocked no medical professional has ever mentioned this to me!!
I've had numerous acute dystonic reactions, to various antipsychitcs prescribed for my Tourette Syndrome (whoo, trading one movement disorder for another!) and one to Memantine. I didn't know it was possible to have a dystonic reaction to memantine, but I had one, one week into a starter kit. My movement disorders neurologist thought there was a chance it could help my Tourette's since nothing else had. Recently abilify caused orofacial dyskinetic movements in another acute dystonic reaction. The first one I had, I thought I was dying, the last one, I thought to myself "oh no, not again." I have dystonic tics now as well, it seems my body learned the movements and is now replicating them, full opisthotonos sometimes, other times just a foot and leg movement that lasts a few seconds. And my doctor says they're just part of the Tourette's. I hate it. And that the only medications approved to treat my disorder seem to hurt me more than help.
I had my first acute dystonic reaction to Fluphenazine, opisthotonus, (body arching) oclyoguric crises,(eyes spasming) and vomitting. Had to go to the ER and get an IV. Since I've had numerous such reactions, including one to memantine, and most recently aripiprazole. All these medications were prescribed for my debilitating Tourette syndrome, but it seems whenever I take a dopamine antagonist, I am only adding dystonia or akisthisia to my list of extrapyramidal syndromes. I even have dystonic tics, which are nearly identical to the spasms of the reactions, only they last seconds, not hours.
Scalpel, love this post and I've been coming back to it over a year now. I have some questions, if you'd be so kind to give your insight...
* Can you tell me if it's a true allergic reaction?
* I'm also curious about the prevalence of this type of reaction?
* Is this something that is taught in typical med school, or is it something just docs with plenty of experience in larger metro areas would generally be able to pick out in an instant?
* Is it common for the reaction to be made worse by touch?
Obviously once you've had the reaction you'd list it as an allergy to avoid getting it again, but I have a playful argument with a colleague who doesn't believe I can actually be allergic to so many things and this is the only "allergy" I list that I'm unsure of.
I read on various google results that this type of reaction rate is ~2%? That seems high to me, but I'm not a doctor. Would you say 1/50 of your patients who take these meds get the reaction? The second time I had it (at Duke), it was recognized, and I realized immediately after that experience that it was what I'd experienced years before when I was given anti-nausea meds with anti-seizure meds and pitocin during labor induction at a super-small-city hospital.
They indicated that I was "almost" having a seizure from pre-eclampsia. Again, not a doctor, but I'm fairly sure semi-seizures don't exist? In both cases, when I was held down, I flailed more violently, and when the blood pressure cuff inflated, that part of my body would start convulsing.
The best thing about having a dystonic reaction (#2) for me was that my procedure had to be rescheduled, and when I came back in for a second go, I got to antagonize the same nurse who treated me during the reaction like I was a deaf/dumb child in a 50s asylum.
Thanks for your time!
I just had a reaction to prochloroperazine. The docs did not know which med made me sick but I am pretty certain.
I have been having severe vomiting and nausea for weeks and I am not pregnant. I was really hungry and fed up! I went in to the ER because I couldn't even keep water down. I was on antibios, zofran and omeprazole.
One morning I discovered I had been taking my amoxicilin wrong, one instead of 2 at a time. I took my comprazine, antibios, claritin and then had some coffee. The comprazine was the best I felt in weeks. I had 2 square meals that night.
Later in the day I was talking to my best friend and then I told her I have a terrible urge to stick my tongue out. She then said as time went on I was talking like I had a lisp. As the day went by it got worse and worse. By the next day I was completely slurring.
I went in to the doc and got a 50 mg shot of Benadryl. Nothing. They could not figure out what made me ill so they told me to stop all my meds.
I was so miserable this weekend again and I have an HMO that drags on so I took some comprazine, but I took Benadryl first. 50 mg. I took half the dose of the comprazine, and I could feel some of the side effects. My tongue felt a little odd and my throat felt full. I am now convinced it was the comprazine.
I know nothing happened with the others because I have had all those meds before. Taking 2 instead of one amoxicilin should not have causes that. Now I am back to misery. Unexplained nausea, headache, vomiting and zofran doesn't help and comprazine makes me unable to communicate. Ugh!
Regarding Anoymous with the 13 year old daughter:
I am a 44 year old man and I have been suffering a headache since the middle of December and it is now the end of January. Last night it was very bad and I went to the ER by myself--bad idea. After a CT scan I was given Toradol, solu-medrol, and reglan all at once in my IV. I was in the hospital bed trying to type out a text to a friend and I just couldn't. My heart started racing, I became extreamly hot and I just wanted to run right out of the hospital and rip out the IV. In stead I managed to find someone to call my nurse. The IV bag had only gone down from 0 to 1 at this time but I was in bad shape. All my muscles in my hole body felt hot or warm. I was administered Benadryl and in a few minutes I had relief. Then they started to continue the trip. Finally at the 3 1/2 mark I found a way to stop the drip and finally found a call button. They thought the best thing they could do was discharge me an I was happy to go headache pain or not. I have to check out the other meds but my hunch is ist was toradol. This folowing morning my legs feel like I have been doing heavy leg presses the day before--sore and broken muscle tissue, and my stomach abdominal hurt a great deal. I hope your daughter gets back to her old self. God be with you all.
It is amazing to me that there are so so many post on this site that all lead to the same conclusion. Almost all of these drugs that have caused acute dystonic reactions are closely related and yet they are not banned from the market.
I went to the emergency room for a horrible migraine and told them that I had had horrible reactions to compuzine,reglan,and ativan. They took me back and started an IV of Phenergan and were about to start some morphine,when I started to feel crawly and started to arch my back and thrash my arms. It progressively got worse with my heart rate shooting up and agitation like I had never felt before.The nurses started to administer some other drugs and I began to fight the hospital staff.It progressed to the point that I was trying to rip out my IV. The nurse called for extra help and my husband said he and three other nurses were holding me down. He said it felt like I had triple my normal strength. I got loose from the nurses and proceeded to climb up on the bed and bark like a dog. It terrified my husband! They finally put me into an induced coma to get comtrol of the situation. Im not sure what other meds they gave me but I was in intensive care overnight and didn't even remember my husband taking me home when they released me. The thing that is different with my case is that I didn't wake up for three days and when I did I had horrible short term memory loss. I thought It would be temporary, but I have never gotten my Short term memory back. I am just not the same. It effected me and my ability to work at the job I had and was horribly frustrating feeling like I couldn't remember things that I had just done minutes before. I wanted someone to pay. Why is it that the drug companies are still allowed to put these so called medicines on the market?I feel like there should be some kind of class action lawsuit, and I am not the kind of person that has ever thought of suing anyone. What can be done?
Deb G.
I had a dystonic reaction to Tamiflu a few years ago. A few days into taking it, I woke up one morning,and my neck was a little bit to the side. I didn't notice it at first, but my mom asked me why I was holding my head weird. By that night, my head was twisted completely up to the side, and the pain was horrible. I kept trying to sit in corners that would hold my neck straight, figuring that putting my neck back in the right position would alleviate some of the pain. I rarely cry from pain, but I was in tears. My mom called the doctor, who just said I could to the ER if it didn't stop soon and it really hurt. Luckily,my mom somehow found out what was going on by looking on the internet, and gave me some Benadryl. I woke up in the morning feeling perfectly fine, like nothing had ever happened.
I realize I probably also had a dystonic reaction to something else in the past, I think Klonopin, but I'm not sure. That time I just had agitation, and paced until it wore off.
I have had two dystonic reactions now both from Droperidol/Inapsine. Satan in a vial I like to call it. Anyhow, you might be asking why twice. Well the second time I was so out of it from the pain meds that I really did not ask what they were giving me. But I was not that out of it not to notice the symptoms. I was extremely agitated, I was hateful to those who were with me, I shot straight up off the gurney and began to rub my legs and rock back and forth. I told my friends that something was VERY wrong, they went out to get the nurse and she found the Dr instead and before she could tell him what I was doing he told her what was happening. He ordered 50 of Benadryl and it symptoms subsided. Then I started to think, if he knew what was happening before she told him then this is a common occurence, why in the world do they even give this. I bet if the doctor had this happen to him at least once, it would only take one time, he would never give this again. This happened to me on Wednesday night it is now Friday and I feel fine now, but I def know that I never even want to be in the same room as INAPSINE. Satan in a vial.
I took compazine for nausea a few years ago. It helped me feel better so I went back to work the next day. Still taking compazine while working. I was in telemarketing at the time. All of a sudden my speech got slurred and the left side of my mouth/face druped. I felt like I was having a stroke. I also had neck and abdominal spasms. At time I couldn't even breathe. The EMT had the audacity to ask me..."are you sure your not just stressed out and having an anxiety attack?" I wanted to smack him! When I got to the hospital, I was spasming so bad they couldn't even do an EKG on me. Next they stuck me in the hallway and ignored me. I was writhing in pain and they did nothing! Finally hours later, the doctor admitted me. I was feeling a little better, (compazine was leaving my system I guess) I started to leave AMA. I should have! I had no insurance but they ran every test they could on me! I was in the hospital 3 days! Not to mention the nurse gave me another dose of compazine on day 2! Needless to say more terrible symptoms! Day 3 doctor came into my room, ignored me, talked to my friend (not boyfriend or relative, what about those hippa laws?) Anyway, doctor said I had tarkitive dyskonisa (sp?). He said go home walk it off and drink some gatorade. Needless to say, I was livid! Now, I have so many medical bills. I'm afraid I'll lose my house! A few days later I saw my psychiatrist and he said, I had a dystonic reaction. All they had to do, was give me a shot and I could have gone home! Can they take my home away from me now, with unpaid medical bills? Compazine is a terrible drug and should be taken off the market!!!! Worried in Florida. :(
I was Googling my symptoms and came across this blog. I've been weaning off of Valium for almost a year, and before that, I was on Klonopin for a short time. I'm having the head turning thing when I go to bend over to do something along with tremors and both seem to be getting worse as I continue to wean. I'm so worried that I have Cervical dystonia, but could this be a reaction to the withdrawal?
This happened to me ten or so years ago with Compazine. I've told doctors I was allergic to it ever since, but was never sure that was exactly accurate. The ER at the time told me my reaction (skin crawling, awful anxiety) was normal, but I have always listed it as an allergy because I just didn't want it, no matter if it was normal or not. I didn't list it last time I went to the doc, and I've been prescribed Meclizine for dizzy spells caused by labrynthitus. I researched it today because I was concerned about it making me drowsy, and found that it was a relative of Compazine. I'm now afraid to take it. Have you ever heard of a dystonic reaction to Meclizine? I've called my doc, but I was already on the blog so I thought I'd ask. It's cool to be able to put a name to what I felt!
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