Information on drugs that can and do cause dystonia

A person with medication induced dystonia.
Every now and then folks ask me to list the list of meds that can and do cause drug-induced movement disorders. This is to educate you, if you are concerned about the side effects of a drug you are currently taking, speak up, talk with your doctor. If you are starting a new one, you will be the only one to investigate it. Arm yourself with knowledge. Be an informed consumer. Listen to that little voice in your head, and be in tune with your body.

Remember, this is YOUR body. You have the right to ask questions and ultimately decide if a med is right for you. Please know that this list is limited and does NOT include all of them…for eg. Risperdal is not on it, but it does cause it. If I can help in any way with questions about this list or my other post, ask away.

*By the way, it does not take extended lengths of time taking these medications in order to experience acute dystonic reactions…for lots of folks, ONE pill is all it takes!

This drug list page is intended to provide information only! We do not advocate any particular treatment option. Therefore, it is strongly urged that patients do not change their method of treatment without first consulting with their physician.

INFORMATION ON DRUGS THAT CAN AND DO CAUSE DYSTONIA

“Some drugs in the neuroleptic category (psychiatric drugs) may cause acute dystonic reactions: thorazine, Haldol, etc. Ten to twenty percent of patients experience acute dystonic symptoms at the initiation on treatment. Some drugs that are used for nausea and gastrointestinal problems are also neuroleptic so they can cause the same problems – drugs like Reglan and Stematil. These can induce acute dystonia. All of these drugs, when they’re used over long term, carry a 20 to 30 % risk of long-term abnormal movements called tardive dyskinesia, and some people with tardive dyskinesia get a form of dystonia, called tardive dystonia. It’s an extremely difficult problem to treat.”

“Alcohol is a recognized precipitant of paroxysmal dystonia, which is a very uncommon form. On the whole, alcohol in moderation does not have an adverse effect. There is an alcohol-responsive myoclonic dystonia, which responds very well to alcohol. People who chronically abuse alcohol can get a series of involuntary movements-tremors, Parkinsonism, and tardive dyskinesia. So chronic heavy alcohol intake is still not being recommended.”

Drug Induced Dystonic Reactions:

Certain drugs have been implicated as causing dystonic reactions or dystonia. These agents are not routinely the cause of SD, but can potentiate or aggravate the preexisting disorder. The following is a listing of the drugs which have been reported OR have the potential to cause dystonic reactions. Whenever possible, dystonia patients should avoid the following agents, except at the recommendation of a physician knowledgeable in the treatment of dystonia.


GENERIC NAME TRADE NAME CLASSIFICATION
alprazolam Xanax Antianxiety agent
amitriptyline Elavil, Endep antidepressant
amoxapine Asendin antidepressant
benzquinamide Emete-Con anti-nausea/vomiting agent
bupropion Wellbutrin antidepressant
buspirone Buspar antianxiety
carbamazepine Tegretol anticonvulsant
chlorprothizene Taractan neuroleptic
chlorpromazine Thorazine neuroleptic
clomipramine Anafranil antidepressant
clozapine Clozaril neuroleptic
desipramine Norpramin antidepressant
diphenhydramine Benadryl antihistamine (Increases the
effect of other pain medications)
doxepin Adapin, Sinequan antidepressant
droperido Innovar antianxiety; anesthetic adjunct
fluoxetine Prozac antidepressant
fluphenazine Prolixin neuroleptic
haloperidol Haldol neuroleptic
imipramine Tofranil antidepressant
levodopa Larodopa, Sinemet antiparkinson agent
lithium Eskalith, Lithobid antimanic agent
loxapine Loxitane neuroleptic
mesoridazine Serentil neuroleptic
metoclopramide Reglan gastrointestinal motility stimulant;
anti-nausea/vomiting agent
midazolam Versed induction anesthetic agent
molindone Moban neuroleptic
nortripyline Aventyl, Pamelor antidepressant
perhenazine Trilafon neuroleptic
phenytoin Dilantin anticonvulsant
pimozide Orap neuroleptic
prochlorperazine Compazine anti-nausea/vomiting agent
promazine Sparine neuroleptic
promethazine Phenergan antihistamine
protriptyline Vivactil antidepressant
thiethylperazine Torecan anti-nausea/vomiting agent
thiothixene Navane neuroleptic
trifluoperazine Stelazine neuroleptic
triflupromazine Vesprin neuroleptic
thioridazine Mellaril neuroleptic
trazadone Desyrel antidepressant
trifluoperazine Stelazine neuroleptic
trimipramine Surmontil antidepressant
verapamil Calan, Isoptin antianginal, antihypertensive

Dopamine antagonists which are generally used to treat psychotic disorders and have been reported to make dystonia worse, should be used with caution. They include phenothiazine, haloperidol, tetrabenazine and pimozide. These drugs are usually avoided in the treatment of one with dystonia due to the potential to worsen dystonia. But in some cases they may be useful. It is important that the doctor prescribing these types of drugs be familiar with dystonia.

More information on drugs that can and do cause dystonia: www.wemove.org



This message was posted on MGH Message Board by hilltopok

If you would like more information about tardive syndromes and the drugs that cause them, contact her at hilltopok@msn.com or visit her website at tardivedystonia.org Remember, you could be the one to save another from a life-long painful disorder. Please educate, then pass it along. Thanks so much!

100 thoughts on “Information on drugs that can and do cause dystonia”

  1. Hi All,
    After reading your miseries, I feel a little ashamed to be posting my small problems regarding dystonias, but am afflicted with spasmodic dysphonia and essential tremor of the head/neck. I take a low dose Clonazepam daily which helps with the ET, but does nothing for my voice. Does anyone know of a drug on the market which helps relieve the vocal shakiness/hoarseness of the voice?
    Thanks in advance, and I wish each of you the best.
    Toni

    1. See a type of Speech-Language Pathologist that specializes in voice disorders. They can often give you an injection that often works miracles. It often lasts for months. Believe it or not, the thing that helps with many voice disorders is botox!

    2. I was singing in a quartet when I developed dystonia. It changed the quality of my voice and I couldn’t hear the different until on playback.
      I needed a mixture of medication. I hate pills; but mine are Baclofen, Tizanidine and Clonazepam. I have sung solos rarely since, Praise God!
      At first I was on Diazepam but it has a short half life. The Clonazapam last longer with a shallow effect in comparison, And without frequent movement, I get stiff. This is also notable in swallowing and speaking.
      I believe they should give the Clonazepam for the days and Diazepam once at night accounting for the rest that would normal and the lack of use which would cause a stiffness.
      Vocal chords may not display the same type of spasms because of the location and their size, and the shakiness may be an inability to sustain relaxation.
      I would ask for this change or Botox. I get Botox in a variety of neck muscles; without it I wouldn’t be able to hold my head up for long or take deeps breathes. You need to consider whether you’re having torso spasms as this can reduce the depth of your breath resulting in early loss of sustainable quality breath control.
      Last thought, without a defined etiology, this may be autoimmune predisposed. Strangely, RA can have a presentation related to the same area in swallowing and speach.
      I really tired of being interesting… the subject of an interesting conversation when they can’t understand the words which I’m saying… the irony. Anyway, I hoped that this helped.

      1. I have the exact same symptoms. I hate the stiffness it is hard to explain to people who ask about” what does it feel like” I am on the same meds you are my DR. also has me on tegretol I just want to say I have gotten through this since I was 27 now 40 and it is just strange to read someone else explaining my daily struggles and I thought I was the only one who had these identical symptoms what else do you do to help with the stiffness I am having a freak out also I thought I had enough meds to last over the holiday weekend I will be shirt two doses on them and I don’t want to end up in the hospital so I am going to cut back on them will this hurt me

    3. Well its not insignificant if you wanna sing or sing for a living! =) mime is shot and singing used to soothe ke and now i dont even have that..

      1. I can relate. Im a classically trained musician,singer and dancer and got dystonia in 2009. In the past 6months im finally regaining my ability to sing and am being pressured to go back to performing but the immune issues and stamina issues are slowing me down too. Feel free to add me. We should chat.

    4. Klonopin and Inderal taken together will help alot. I take both for my illness which is Dystonia and Parkingsons disease

  2. I have Spasmodic Torticollis. This past week I was told I have a cancerous lesion that is not life threatening but, it does need to be removed. I need to know what to tell the surgeon which anesthetics that I cannot take. I know the twilight drug Versed is a “no no” and that Lidocaine/Xylocaine causes tremors.Does anyone else know how I might find out about this category of medicines in relation to Dystonia?

    1. when I was getting Cataract surgery I called ST-Dystonia and they said to use Popofol (sp?). Definitely not Versed.

  3. I developed Dystonia and Dyskenisia after a doctor gave me an add on medication to treat my major depression. For 6 years I had over 40 medications from 14 doctors to treat me. The medications only made things worse. The doctors had no idea how to treat the Dyskenisia and treated me with disrespect, were insulting and humiliating. I was always referred to the psych department for treatment by the neurologists. I’m recently dealing with being called a fraud, that I could harm children, elderly and other vulnerable members of society because it is assumed that I took an anti-psychotic and are bi-polar. I have been banned from volunteering at assisted living, working with elderly, that I could harm my mother with Alzheimers. I’m 59 years old, a former professional woman and developed TD in 2002. My depression is so severe and any medication only brings on severe facial spasms. Recently I took Celexa and had to stop. I hope to find a new doctor who knows and understands.

    1. you need a detailed review as drugs used in treatment of depression usually do not cause dyskinesias or dystonias…more information will be required for appropriate advice..Have you had an MRI brain done?

      1. I spoke with a leading neurologist in my city and he stated that he has patients that have incurred dystonia after taking antidepressants. Another doctor informed me that ANY drug that stimulates the neurotransmitters has the ability to cause dystonia.

          1. Seroquel has got to be the worst drug for me. I have cervical dystonia and a psychiatrist put me on this nasty pill as a so called mood stabilizer. I shake more than ever and don’t want to go anywhere. It’s so humiliating. Hope you have better results.

        1. Can anyone tell me if my Cervical Dystonia induced by side effects of Zoloft will eventually go away after stopping Zoloft. My poor 14 year old daughter started suffering of neck spasms and twitching a year ago, after complaining and telling her Neurologist and her Doctor what was going on, in and out emergency rooms she was just diagnosed two weeks ago with Cervical Dystonia caused by the Zoloft, the sad thing is instead of reading into it her doctor kept increasing the Zoloft upto 150Mg cause he said it was her nerves, now the same Doctor is saying sorry we realized the Zoloft has caused the Cervical Dystonia, my poor daughter has debilitated so much, I have read a lot about it now but I still have not seen any comments on weather or not the Dystonia will go away after the Zoloft is completely out of her system. She is now on 50 mg, going on her third week hoping to take it all way in the next month. I hope some one reads this and can share if they have any idea.

          Thank you so much. Mercedes.

          1. Doctors Are Idiots I sit at home now because of my tremors caused Medication from a Psychiatrist. I can rarely drive now because of my dystonia

    2. Doctors have treated me with disrespect and been unsympathetic to say the least. They walk in the door, don’t ask questions, don’t know my diseases and immediately say I’m a drug seeker because I’m under a pain management doctors care. Never mind the fact that they are the ones who referred me to begin with!
      I’ve had 42 surgeries and suffer from cervical dystonia, systemic lupus, gastroparesis, interstitial cystitis to name very few. In 2006, my breathing & heart stopped at the doctors office. I was brought back by CPR. After toxicology and blood test came out normal, that I wasn’t “drug seeking” or “on drugs” they advised me to go to a psychiatric hospital and be put in a drug induced coma. Wtf?
      No wonder people are terrified to seek “help”.

      1. Hi ,
        I am a former sufferer of dystonia and want to offer you my support for those struggling with this awful disorder or another movement type of neurological disorder.
        After overcoming it, I tell my people not to belabor over the cause but allow me to help overcome the symptoms.

        I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

        It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
        on the health fundamentals that I have discovered that can make a huge difference on improving one’s health.

        I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
        30 countries and 49 states. Please feel free to call me if you would like to learn more about my work
        and how I have been helping others. The naturally organic whole food supplement also has the ability to help many other health issues.

        There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.
        For more information, please visit my website at http://www.dystoniahealthadvocate.com and check out my new free ebook that highlights my success stories.
        Thank you.
        Steve Zarren
        410-486-2525

        1. If you want to help dystonia sufferers why don’t you tell anywhere in your website exactly what these miraculous whole foods are? Fine if you want to make a profit, but kind of cruel to make people think it’s free advice.

        2. Mr. Zarren
          You have been blocked from almost all Dystonia suffers,websites that deal with help and support from each other .
          How do people prey on others,misfortunes ?!!

      2. I too have Lupus (SLE) and I have severe R.A. I was given Risperidone for sleep and anxiety as I too am In pain management (along with medical cannabis cuz I can’t keep most foods down normally). One week ago I took one of my risperidone tablets and within one hour I was starting to go through a SEVERE Dystonia attack. It arched my back up BACKWARDS and my head was going to the side and trying to go back towards the very back of my shoulder. I COULD NOT BREATHE. It cut off my airway and my tongue was swelling up BADLY. I thought I was gonna die, really. It was so bad that the paramedics in my home took one look at me and how I was talking (crying) and they phoned in orders to the hospital because they couldn’t even wait to get me there via ambulance for the medicine they had to inject into my vein, They had to give me a full syringe of an Benadryl and this stuff called Cogentin. Within 10 seconds of it going in my vein…I completely unlocked, was able to talk and felt NORMAL after that….however, the hospital released me so fast that I had another EVEN WORSE ATTACK from it not more than 4hrs later so another ambulance had to come out AGAIN to save me (the same crew that saved me the first time around had to do it again) and wouldn’t ya know….the shot went into my I.V. in the ambulance and by the time I was at the hospital I was alert and seemed fine…only deathly afraid it would happen again to me….and I am freaking scarred from this ordeal! One pill is really all it takes and I WILL NEVER take a medication in this catagory EVER again. Worst experience of my freaking life. Worst hell ever! You all be careful on that stuff out there. I pray for ANYBODY who has to go through an attack like that. *cringes*

        1. I went through a similar problem in June 2013 had serve attack off dystonia I didn’t know at the time the pain was something I never want to go through again I was rushed in to a and e they didn’t know what to do with me no pain killers worked my back was arched up my husband said the only part of me body that touch the bed was the back of my head and my toes they got intouch with kings college in London who told AE to knock me out with diesapan large dose I don’t know what to do anymore m name is Diane

          1. I had similar experiences in terms of breathing problems and having to go to a&e by ambulance often blue lights and sirens to get me there quickly. The treatment is procyclidine IV and this usually settles within 3 mins on the clock….a nurse actually timed this!. That was my life for months and at one point I was in an ambulance 5 days in a row and on another ocassion twice in the one day. I did my own research with the help of my pharmacist and GP. The outcome was that clonazapm and any drug from the benzo family works well on the muscle spasms and calms things down and offers stability to my generalized dystonia and acute spasms. However in calming down the muscles it also calmed down the intercostal muscles and the throat muscles to the point were they dont work properly and on 2 ocassions I stopped breathing completely….I thought I was going to sleep and the pain was gone and the spasms were gone. I was rudely awakened with what ever they did and the problems returned twice as bad. This remained unilt the staff got the IV drugs in to stabilize the situation. My address was red flagged at the call center and when I made the 999 call the paramedics were at my home before the call was finished. The paramedic would take the phone from me and speak to the controler and say its Ok we have her and on another time the ambulance was delayed and the paramedic attending radio in and I heard the conversation when he was asked if he was coding the call he said yes a code red. For all of these reasons I detoxed from the pills and now only take them when things have been going on for days and they give me a break. I had an excellent physio who taught me loads about self management and I might add here that I then taught the paramedics! I use tai chi, significant change to my lifestyle and attitude …not that easy! and I( do physio religiously. I got 18 months relief from all my hard work but have recently acquired new symptoms which has given me quite a step backwards. I am now venturing into the road of alternative meds/theraphies and am assisted by the physio for this. I had my first acupuncture session last week and it made such a difference to pain and mobility. I am far from out the woods yet and recognise that I am in a state of chaos both physically and emotionally due to the level of pain . I am pursuing an early appointment back to the Neurologist but having given the information over to the secretary I got a phone call yesterday from a Hospital registrar to caution me about how I am using the dystonia medication which was fine because I write down in a book every pill I take to keep myself safe becasue when the pain is at its height truthfully I am not in control of what I am doing.
            Sorry if this is a bit of a ramble but the point is the pilss we get to manage this situation can be more dangerous to our staying alive than the actual condition itself! Love and hugs to all who are finding things tough just now we need each other more than we know at times xxx

        2. Thanks for sharing your experience. I had the same experience when I took 10 tablets of stematil due to depression. Stematil is used for nausea and vomiting releif. But the reaction happened after 12 hours. I was working on computet suddenly I felt irritating feeling in my tongue I can not explain that torment. Then my jaws, neck all became abnormal. I had no control over them. I had problem in breathing. But the most worst part was the fear. I did not feel that fear in my life. I remained in that condition for 5 hours. When I was taken to hospital thay gave me treatment but nothing happened and at last they injected Valium injection and within seconds I was alive again. After a week I went to psychiatric to treat anxiety he gave me a medicine and once again I was attacked by dystonia and once again I was given valium injection.

          Now I never touched nausea, vomiting and psychiatric drugs becauae I am so afraid of pain of dystonia.

          Interestingly pain killers like tramadol did not cause dystonia despits the fact pain killers work by affecting brain pain receptor.

          Thanks

          1. Do pain killers aupposed to cause dystonia because they affect brain pain receptor. im confused

        3. That is a horrible experience and I know it all too well. Mine may have been less severe than yours, but it was probably the most painful thing I have EVER experienced. Last October, I was in the hospital & I was kinda freaking out a little, so they involuntarily gave me Haldol to relieve some of my anxiety. Mind you, I was 5 months pregnant at this time. I’ve taken it b4 & had issues, but never this severe. If I take benadryl or cogentin w/it, I’m usually fine. It all started w/ a stiff neck & then back. Then my face began to tighten & i had involuntary spasms of the face. My neck was so tight that I experienced the same thing as you… my neck was turned completely sideways & trying to go toward the back of my shoulder as well. They did not want to give me either cogentin or benadryl b/c of the pregnancy. It progreased very quickly & I was crying in agony. They thought I was faking it up until they finally gave me some cogentin thru my IV & I had complete relief in less than 5-10 minutes. However, my muscles in my neck & back were very fatigued after that. I never want to go thru that EVER again & I now list haldol as an allergy on all my medical records.

      3. I have cervical dystonia in my neck from geodon and some other antipsychotics. They lied to me and kept putting me on more. I have to do all my own research now. My neck spasms were so severe that no words could possibly describe the pain I was in. I had to quit my business for over 3 yrs. was bed bound for over one and got addicted to a concoction I was on because my dr. Knew I was not abusing and o was constantly looking for help. I was on 4 soma, 4 Valium and 4 oxycodone w/o Tylenol for yrs. I progressed to this level because my body kept becoming ammune to it and all my other dr.’s seemed to have gotten their degrees out of a bubble gum ball machine. I finally found a dr. That knows what he’s doing and gives Botox in my neck and it controls the spasms. Now I believe it has moved into my jaws because it can move around and has done this before when my neck goes into remission from the Botox. So now messing with the pain meds again because of the pain and the Valium and soma. Well no shit! My Botox dr. Kept telling me the lithium was making it worse and my psychiatrist wouldn’t listen. Those pills made me go crazy. I was in and out of the nut hut 6 times in 3 yrs. when I got off the pain pill concoction the 1st time. My sanity returned. I thought I had a 3 yr. bad bipolar spell. I’m not even sure I’m bipolar. I’ve only had on psychiatrist be honest enough to tell me after weening me off several of the bipolar meds that he felt o was just adhd which I was diagnosed with when I was 8 and that many dr.’s misdiagnose people with bipolar because the 2 have so many similarities. I would suggest that anybody in my condition find a Botox dr. That knows what he’s doing. Try some holistic ways of dealing with pain, stress snd depression and get off all these damn pills. Or you will end up like I was. A frequent flier at the nut hut. I’ve been so many times that 2 different hospitals… Every person working on the nut ward knows me by name. There is a pill for everything now days. Back in the old days they called it “having a bad day” not BIPOLAR. Well good luck.

        1. Fuck me. I feel so hard for you!!
          Its honestly awful how these doctors have absolutely no concept of real lives and real people with problems they are dealing with!
          And to think from one trip to the crack pot you can send up in physical and psychological distress for 3 years under no fault of your own!!!!
          Clearly shoes how little they knew, you would have done better dealing with problems alone!
          It’s crazy, I have been through this constant battle for the last 2 years trying countless different drugs for my ADHD which was diagnosed for me late when I was 16, and then the bridge of antipsychotics that they’ve started me on, like you because they are unsure of whether I have bi polar!

          They are the ones who seem like they are straight from the crack house.

          I am now seriously in need of some advice and you seem like the right person to ask, as I do not want to experience involuntary movements, what is the best thing for me to do?

          I know it is a big question ,
          Cheers, and all the best X

    3. Please go see a doctor that specializes in dystonia. Unfortunately, most doctors haven’t heard of it and if they have, know nothing about it. Do your research. I’m so sorry you went through all of this. It’s stressful enough dealing with Dystonia. I have cervical dystonia and often look like a bobble head. I’ve had it since I was 21. I finally was diagnosed by a neurologist who specialized in it at age 42.

  4. I have been diagnosed with Cervial and Laryengeal dystonia and Blepharspam. I get 400 cc’s of Botox every 12 weeks and take Baclofen and Tizanidine for the spasms. Nothing really seems to help. The botox only lasts 6 weeks and the meds help just a little. The doctors only want to talk botox and meds. Is there anything else out there that helps? Thanks.

      1. Wow, do I feel you but please do not give up on yourself! I can relate all too well to all of these stories and feelings as I battle daily with Chronic Pain Syndrome, a laundry list of other illnesses but namely Generalized Dystonia. The meds are generally for the birds although some have aided…I invoke alternative forms of healing as it’s always been a staple in life and culture in conjunction with Western medicine that does something. Please, please research, ask a zillion questions, anything that may assist you and please have hope. Do it for YOU!

  5. I was told that my symptoms are due to psychological condition and nothing else.
    I am to have an MRI but I notice that I have had several of the meds implicated in Dystonia. my form takes remor,s spasms which I do not know where will hit me next. today my toes curled up very painfully>
    my hand went into a curled position.
    My head jerked backwards.
    I am unable to talk since August 2008, near to the end of radio therapy. did not feel stressed at all but people keep sayng it is stress. Yes stress can cause a big change in symptoms such as uncontrollable jerking, of many parts of my body. I can whisper sometimes) I cannot talk on a telephone at all due to stammer, stutter, repeating of words many times or just complete silence.
    I have had cancer treatment and the anti emetic is on the list I just read.
    when shopping I am often unable to let go of my credit card or money or wave my hands around before I can actually get the card into a machine or to give over the money .

    I often cannot walk. or am very wobbly due to muscles being weak. I use a stick anyway but sometimes need two or I will fall over.
    I cannot eat properly as my hand jerks and I miss my mouth or stick my fork into my face somewhere.

    Is this really all psychological?

    How many people have been told that?
    How did you get diagnosed?
    OR are we all malfunctioning through psychological factors?

    Help as i am now getting depressed. soemthing I have been diagnosed with in the past but I have anxiety more than depression. I do not find it difficult to get up in the morning I have lots of hobbies. I drive when not too tired. I take care of my personal needs.
    I am disabled with arthritis in most of my joints and bursitis in my Hips as well as the arthritis.
    I
    What scientific research has there been done to show this is a medical condition and not just a psychological one.

    Please give me some hope.
    MY family just think I need anti-depressants I was not depressed.
    Even going through all the cancer and having it come back And breaking my ribs on 19th Dec 2011 and they are not healed. BUT being told all this is psych induced is too hard to deal with.
    thank you

    1. You sound very much like my daughter age 55, who has Dystonia for 20 yrs. Right now she is very bad with strong spasms and can only whisper. The doctors like to say it is psychiatric, as they don’t know what to do. She is completely bed ridden , cannot eat without big problems, cannot walk and even her speech has left for 3 months and she tries to whisper. She was in remission for 5 years and then it returned. Stress is a big factor!!!. She’s had Botox and many, many meds and none of them really helped. There is no cure for this and not much research being done as not enough people have it. It is not psychological. The only drug she takes now is Valium which only takes the edge off the pain, but quit all the other drugs completely, as they were of no help anymore. She was on CYMBALTA FOR 5 years, but then it quit working and all the symptoms returned and her head will not stay up and goes left, right, back and forward. We don’t believe it’s depression, but anxious, as she is scared and worried. She receives the S.T. DYSTONIA (SPASMODIC TORTICOLLIS) Magazine P.O. Box 28 Mukwonago, Wi. 53149. It helps to see the different people that have this and what they take and gives you some support. You can go on the INTERNET AND IT LISTS ALL THE DRUGS NOT TO TAKE WITH DYSTONIA. I wish you all the best. God Bless, a very worried mother

    2. Hey there my names is kevin and i been on a few of these meds before aswell! First i noticed my posture feeling bent, then my legs sticking outward, now my voice is going because im a singer and its getting harder to talk let alone sing. my neck hurts and it feels like i cant breath. i havent took any of these drugs for 3 years except valiaum recently. Could i be developing full total dystonia all at once? I thought it would start in a leg or an arm first but im notcing fast changes in all of my body even my arms,hands, eyes. what the hell is going on how can this happen to me i was a personal trainer a month and a half ago and a singer. Its progressing so fast that i believe i will be in a chair without being able to talk,see,eat and breath properly let alone move my arms and legs. How can this be happining to me so fast. Its not in your head because im american that moved to england 5 years ago and we have the best neurology clinic for dystonia in the world. The ignorant doctor told me i have tourettes and anxiety, Its sad i have to diagnose myself over google. No doctor can tell me what i have because they arent living in your body. Not one part of this is in you head.

      1. Dear Kevin,

        Please see a neurologist Not A psychiatrist! You are not insane ;they are! psychiatrists give you meds to mask the side effect of drugs they give you; psychiatrists and GPs seldom know about movement disorders. My GP and psychiatrist had me on meds that worsened the dystonia as well as hand tremours. I hope to try a beta blocker for my tremours and use Botox more frequently for head tremour. Will see my neurologist soon
        I wish you well finding a good specialist for movement disorders.

        Christina homes

      2. Hi ,
        I am a former sufferer of dystonia and want to offer you my support for those struggling with this awful disorder or another movement type of neurological disorder.
        After overcoming it, I tell my people not to belabor over the cause but allow me to help overcome the symptoms.

        I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

        It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
        on the health fundamentals that I have discovered that can make a huge difference on improving one’s health.

        I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
        30 countries and 49 states. Please feel free to call me if you would like to learn more about my work
        and how I have been helping others. The naturally organic whole food supplement also has the ability to help many other health issues.

        There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.
        For more information, please visit my website at http://www.dystoniahealthadvocate.com and check out my new free ebook that highlights my success stories.
        Thank you.
        Steve Zarren
        410-486-2525

    3. Hi Scatty,
      I was recently diagnosed with lingual dystonia. I also have some dystonia in my hands and legs. I am 100% healthy and have never had any medical problems. About a year ago, I was placed on Zoloft due to some life changing events that I needed help coping with. Shortly after, my speech became impaired. I did have a small issue with my tongue but nothing that affected speech at that time. Now I cannot talk clearly, it hurts to talk, my hands shake, do not work as needed all the time; and my feet also curl like yours as do my hands. I was also told it was stress, psychological but, I also did not feel this diagnosis was correct.
      I recommend a neurologist. I went to the neurologist on my own behalf and they diagnosed me. It took months, of me going from doctor to doctor, due to my own hunches.
      This being said, I have not found anything to help my dystonia as of now. Just meditation and holistic remedies that alleviate some of my symptoms.

      Good Luck

      1. Hi ,
        I am a former sufferer of dystonia and want to offer you my support for those struggling with this awful disorder or another movement type of neurological disorder.
        After overcoming it, I tell my people not to belabor over the cause but allow me to help overcome the symptoms.

        I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

        It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
        on the health fundamentals that I have discovered that can make a huge difference on improving one’s health.

        I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
        30 countries and 49 states. Please feel free to call me if you would like to learn more about my work
        and how I have been helping others. The naturally organic whole food supplement also has the ability to help many other health issues.

        There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.
        For more information, please visit my website at http://www.dystoniahealthadvocate.com and check out my new free ebook that highlights my success stories.
        Thank you.
        Steve Zarren
        410-486-2525

        1. Bless you Mr. Steve Zarren! I’ve relentlessly researched educational information on Generalized Dystonia with a strong force of spasmodic dysphonia which I have. I came across your e-book and the website some time ago which helped me. I’m determined to cure myself someday…thank you for sharing invaluable insights and reminding us all that it is possible to overcome!

    4. Have you found answers to this condition… I am not as severe as you described yet, but quickly spiraling out of control.. help… any advice? thanks

    5. DO NOT let them tell you is psychiatric….it’s NOT. It’s neurological. Get a referral to a neurologist or a neurologist that specializes in movement disorders!!!! In fact dystonia was caused by Latuda almost immediately I started to suffer but I told myself it was stress or exhaustion and continued taking this medication. I went to the ER at what is supposed to be one of the best hospitals in the United States and they sent me away with some muscle relaxers and to follow up with my general practitioner (which I don’t have as well as no insurance). I went to a different ER in my city and when the doctor asked me what meds I took, he said there’s your problem. You are having a severe dystonic drug reaction and referred me to a neurologist. I’m in the beginnings of this long journey. I’ve been told that this condition is irreversible and it makes me furious because I was on this medication for a year and NO ONE could tell me anything and nor were they even aware of this problem from the medication until I found this one doctor in this ER. Please don’t accept the answer that it’s psychiatric because it isn’t!!!

    6. I feel as if you wrote my story. Before being properly diagnosed with Generalized Dystonia eight years later, I was told too many times to count that “it’s all psychological…it’s in your head…you’re just stressed out…it’s your anxiety…there’s nothing organic about your PROBLEM…”! YEARS OF HOPLESNESS FROM A MYRIAD OF “SPECIALISTS”. I’d have full blown dystonic episodes during evaluations (and anywhere, any time/place) – entire body contortions, inability to speak, hands clenched so tight breaking water bottles unable to release anything out of my hands, those tightly curled toes on both feet simultaneously to the point of excruciating pain and the need for someone, anyone to pry them all open. Then the neck jerks, flailing limbs – I’ve punched, slapped, kicked myself infinite times!!! All in my head??? The audacity insenses me still. It has gotten so bad that I now have developed several international accents, continuously fall…well, YOU KNOW MY STORY!

      One thing I decided years ago was to live in spite of all of this havoc. By no means is it hardly easy as I was a thriving, successful young woman living my purpose. One day I walked out of my own home to never return due to a near fatal auto accident in which I was a passenger – the ONLY person of three to be mutilated. Complete devastation. I’ve been unable to work for years or truly live vs existing as my life turned completely upside down. Somehow you must hold on to the value of your self betwixt the chaos and as crazy as it may sound, if we sit quietly the lessons intertwined in it all are being revealed. I’ve grown tremendously but I’m still figuring it out…please know that you’re NOT ALONE, use your voice as it is heard and I truly empathize with you while I believe that somehow we can and will cure ourselves.

      1. Scatty,
        I commented on your post, however it was misplaced under Kimberly Morningstar’s post (Kimberly: I’m 100% in agreement with you and thank you much!). It’s all relative anyway, we’re all pretty much speaking the same language!

  6. I forgot to say the I had only one dose of Ifosfamide Chemo and it caused life threatening side effects of liver failure (extremely rare) and nerve damage which is a known side effect.
    I wonder if this should be added to the list.

  7. i was on zoloft for five years prior to being diagnosed with cervical dystonia, i tried the botox and this just made it much worse. I ended up weaning off the zoloft & a week & a half after stopping the neck pain disappeared. I think that maybe that should be on the list too.

  8. I just woke up one morning 6 yrs ago with cervical dystonia. I had to have 2 ruptured discs replaced because of the severe pulling, I also have had bilateral surgery due to Eagle Syndrome. Finally had both occipital nerves cut because I’ve had migraines 24/7 since I can remember, which could have started the whole dystonia thing. I also have a deep brain stimulator and have botox every 3 months. I am still in constant pain and take between 6-8 Phrenilin(fioricet without the caffeine) a day. Could the Phrenilin be causing this problem since I started taking 1-2 pills a day about 6 months before my nightmare began?

  9. hey, my name is Michele, im from perth WA, for the past 7 yrs, i have suffered with dystonic of the face, tongue, and neck, it is so painful, i have benzipine in my handbag when the attacks occur, most times, i need hosp for iv benzipine, most ambulance drivers do not know what dystonic is, i try and tell them but they cant understand me due to my tongue twisting and jaw being pulled to one side, there needs more education of dystonic attacks, it would save alot of embrasement, and time,,

  10. I noticed that you had mislabeled a couple of the medications- for example Phenergan is an antiemeticdrug that can also help with insomnia, and Mellaril is an antipsychotic.

    Thank you for taking the time to write this list.

  11. I have late-onset generalized dystonia, presenting in attacks/storms. I’ve never taken any of the meds listed. I took Fluoroquinolone Antibiotics (Cipro, Levaquin, Avelox..). These antibiotics, without any doubt, caused my dystonia and more.

    1. I had a similar reaction to Levaquin.It caused severe muscle spasms.I now have it listed as an allergic reaction on my medical records.

    1. I HAVE!!! actually Lyrica (Pregabalin) is the new improved gabapentin. I was on Lyrica for 3 months and weaned off it slowly, however, I began having myclonic episodes. Or Dystonia or what ever, a “movement disorder”. At the time I was being treated through workmans comp and got a bad rap with the doctors and at the hospital. They all thought I was faking it. It has changed my life for ever. I still have days of seizure like epispdes. The right Acupunture can make it stop for a while. It is like hitting the reset button on my brain. then I am ok for about a week to 10 days. Hope this helps. we are NOT crazy we have been damaged by medically prescribed chemicals that have bad affects of our nervous system. Good Luck

      1. The doctors are unbelievable. Why in the world would anyone ever fake dystonia? That is the stupidest thing I’ve ever heard. I’d have to punch someone in the face. I’ve learned more about dystonia on my own than from any doctor.

  12. I had an acute reaction to Prozac last February which sent me to the ER. I was later diagnosed with serotonin syndrome. The occasional bouts of dystonia have not yet resolved. They are definitely more infrequent though, and are usually linked with physical or emotional stress. Something as simple as trying a new weighlifting exercise or doing too many crunches can set it off.

    1. Please locate a very good neurologist, not a psychiatrist or GP as they know little about movement disorders. I started having head tremors after using Paxil, a drug like Prozac. I’ve used so many antidepressants and to no avail. Currently on Zyprexa which is linked to dystonia! I will ask my doctor if I can replace Cipralex and Zyprexa with A beta blocker because I feel terribly anxious. Maybe that would help you. Get that second medical opinion and good luck!

  13. A Spasmodic Tort. sufferer.
    The medications that were miraculous for me, especially gabapentin /Neurontin, for 15 apprx. years no longer seem to help. I don’t have the pain I had nearly as much but do have as if a different form of the twisting. I wonder if at a certain age or length of time it changes. Or one’s body does with the medication. Anyone else had this happen?
    Blessings to all.

  14. I had a bladder surgery last week and was advised by my pre-op nurse that the nausea patch put on my neck could cause hallucinations and if this occurred remove the patch right away. At no time was I forewarned of what occurred next. I recall very little but my family told me I held my hands up in the air for hours, pupils fully dilated, unable to speak and held my mouth open and chomped my teeth up and down. I was taking to the er where the drs thought I was high on illicit drugs until they searched my profile and discovered the patch. I was given Benadryl and sent home. I returned to er 8 hours later where I continued to experience dystonic reaction for the next 17 hours and serotonin syndrome as a result of meds given for surgery. I was told the Benadryl actually intensified the the duration. It has been 6 days since my episode and I still have no memory and my brain feels like jello. The research I have done thus far is frightening and more patients should be educated about these horrifying after effects.!!!!! I hope there are no long term issues and return to normal soon. My heart goes out to all who have suffered this experience.

  15. Hi ,
    I am a former sufferer of dystonia and want to offer you my support for those struggling with this awful disorder or another movement type of neurological disorder.
    After overcoming it, I tell my people not to belabor over the cause but allow me to help overcome the symptoms.

    I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

    It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
    on the health fundamentals that I have discovered that can make a huge difference on improving one’s health.

    I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
    30 countries and 49 states. Please feel free to call me if you would like to learn more about my work
    and how I have been helping others. The naturally organic whole food supplement also has the ability to help many other health issues.

    There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.
    For more information, please visit my website at http://www.dystoniahealthadvocate.com and check out my new free ebook that highlights my success stories.
    Thank you.
    Steve Zarren
    410-486-2525

    1. Most interesting! My dystonia started when I was forty-six due to an injury directly after an injury. I am willing to believe that a healthy life style will help me. I was already a vegetarian, and since have removed all things seemingly not to be healthy. 9 years later, most of my foods are raw and I actively stretch and spinal remolding for an injury and etiology of unknown origin. Sprouting lentils and getting the rawest milk legally possible with several different types of leafy greens isn’t ample. While I am blessed to have survived new traumas, I’m not as concerned about the other issues as I am about the dystonia. I stuck with pills around the clock so I can present myself as not able to do. I am willing to make a lifestyle if I can afford it.

  16. I have the shakes when I take medication my doctor prescribed me lyrica I have taken it several times with caution because everytime I take it I get the whole body jerks it is really hard to use my hands if am holding something and my hand jerks I will even drop what I am holding or at least spill some of it . I have been prescribed many different type of anti seasure medication for nerve pain I would rather be in pain than have the jerks so all neuro pain meds cause the jerks . so if you are taking any new medication and suddenly get the jerks chances are the medication is the cause talk to your doctor to see if he can find another medication or see if you can stop taking that medication I personally find that I don’t need any type of medication if the results of taking the medication cases worse symptoms . well I hope my personal exp will help you if you are having the same symptoms as I have had for the last several years .

  17. I found these definitions that are spot on
    Tremor: Rhythmic oscillations caused by intermittent muscle contractions.
    Tics: Paroxysmal, stereotyped muscle contractions, commonly suppressible, might be simple (single muscle group) or complex. Temporarily suppressible.
    Myoclonus: Shock-like, arrhythmic twitches. Not suppressible.
    Chorea: Dance-like, unpatterned movements, often approximate a purpose (e.g. adjusting clothes, checking a watch). Often rapid and may involve proximal or distal muscle groups.
    Athetosis: Writhing movements, mostly of arms and hands. Often slow.
    Dystonia: Sustained or repetitious muscular contractions, often produces abnormal posture.
    Hemiballismus: wild, large-amplitude, flinging movements on one side of the body, commonly affecting proximal limb muscles but can also affect the trunk.

    I hope this will help you understand what you are having

  18. Hi my name is Brianna and I have terrible tremors and off and on my voice gets extremely shakey and it’s hard to talk I take geodon and Prozac when I was on ability as I would try to sleep my body would jerk and now at night I try my hardest to relax my body so I can sleep. Is this dynostia starting? Should I go to the hospital?

  19. HI, you should add to the list Sertraline, i had taken 50 mg a week, after moving up to the 100mg had serious side effects and my doctor did not believe me, promised to check in my side effects but i should keep taking them, and i have drug induced dystonia since September 2013 and no doctor has a clue how to treat me, my life changed and no hope it will ever go away, it gets worst

    1. Yep. Sertraline is Zoloft and is mentioned several times here. I think that’s the worst of the SSRIs for depleting dopamine and causing movement disorders.

  20. I suffered through ‘serotonin syndrome’ many times before big Pharma admitted the problem (which is basically a full blown dystonia) while taking one version or another of SSRI’s and getting a tryptan shot for migraines. They would not believe that I was truly having a reaction – after all the drug reps assured them it wouldn’t happen – they thought I was drug seeking for pain medication and pretending to have a reaction. My husband actually witnessed them slip me the drug in my IV when my eyes were covered. Within 2 minutes I was arching my entire body and grimacing so badly I felt I might break my teeth. Benedryl only made it worse. Someone earlier mentioned Avalox and Levequin – I had extreme tendonitis from this type of antibiotic but the doctor who prescribed it told me that was a one in a million reaction and refused to report it. Later I saw that these drugs carry a black box warning of lasting and permanent tendon damages that can occur. While taking SSRI’s for over 10 years I developed suicidal ideation (something entirely new and different). It wasn’t until I withdrew myself from all anti-depressants that I read about the black box warning for children and adolescents only – but apparently this reaction is fairly common in adults as well. Bottom line – don’t take ANYTHING without doing your own research.

    1. That is so sad and I am sorry beyond words to hear of once again doctors not believing reactions. U of L gave my hospitilized 79 yr old father morphine (and he was not having pain!) twice after I told them ‘no more…he is having the violent reaction to it every time’. After weeks of around the clock with him I knew…and the last time WAS the last time. With the help of his one good nurse and an intern I got him to another hospital.

  21. What helps one person can induce the same problem/disorder/illness in the person standing next to them. The warning should be in general that ANY scripted Rx or item off the shelf of a grocery store vitamin section can possibly cause something. Make something you already have slightly to drastically worse. Increase or decrease symptoms. Increase or decrease the effectiveness of your Rx. Etc. Etc. Etc.
    Endless bad and even some good possibilities.
    I have been treated for CD for 19 years with gabapentin and clonazepam. But perhaps a tolerance to medication has kicked in the past 3 years? Generics not working as well? I have traced down all else I take and eat.
    The major stressor in my life since moving to a new state has been just lately the rules on clonazepam have changed drastically. Can no longer go to my family doctor (home state) and get my 2 scripts for the year. And changing doctors to one to write both scripts is proving near impossible. The best I can do so far is a 80 mile round trip to pick the one up each month.
    I have NEVER taken more than prescribed 20 years ago. Furthermore have never so much as smoked pot and feel as if I am being treated as a druggie for an legitimate long ago prescribed medication. Tomorrow I call attorney offices.

  22. If these drugs are causing dystonia, surely we must be prone to dystonia for the drugs to cause this. I heard it can be hereditary. Anyone have any ideas on this ?

    1. Most drugs are poisons when taken in controlled prescribed amounts may remedy a problem. Some people are more resilient to poisons than others. This is similar to allergies in that not every one is allergic to the same thing. Botox is a poison common to mayonnaise when left refrigerated. This drug and toxin when I get sick from the flu and have a fever allow me relief and freer mobility. I have to reduce my medication depending on the illness. We are just different. In some ways better, in most maybe worse.

      When treating a person, care must be taken to read all of a medication’s side effects instead of treating with an acceptable loss in pursuant to FDA has approved. There’s more than one medication to treat everything. No one is prone to a side effect of a drug that shouldn’t have been administered; but they were prone to have not received the medication by standards of practice.

      This is why they are called doctors; the expectation is that they are masters of their practice. Sometimes you can refuse a medication, and it will still be presented to you.

      The best example is if one dies as a result of taking one of many medications or courses of treatment to address a non-terminal disorder, would they be prone to death? No! it would have been better not to treat. Side effects aren’t reasonable when the patient’s history hasn’t been considered or if the risk outweighs the benefit.

  23. Lipitor and statins that cross the blood-brain barrier should be here. Blood LDL levels and Brain LDL levels are 2 (Two) separate issues.
    While high serum or blood LDL may lead to a heart attack, brain LDL are needed for almost everything. Nerve cells are primarily cholesterol on the outer layer which includes the miles of branches.
    Lipitor, some statins reduces both, serum LDL and brain LDL. In the brain, statins work by poisoning an enzyme (HMG-CoA reductase) which is needed to produce cholesterol, adrenal and sex hormones, memory proteins and maintain cell energy. Lack of cholesterol in the brain leads to hardened cell membranes, and then dementia.
    So while talking Lipitor, there is a possible risk of myopathy, a muscle disease in which the muscle fibers don’t function properly; spasms, unexplained muscle pain, tenderness, or weakness; Confusion, memory problems, or other cognitive issues.
    I took Lipitor for five days before I couldn’t walk. It felt like my ankle was broken. Returning to the facility, no tests were done; they gave me something from pain and sent me home on crutches for which I asked. I reviewed my new medication and stopped the Lipitor and the issues slowly resolved.
    To reduce serum LDL, one could take Miralax or a fiber laxative; one could take a Omega 3 supplement with their fatty meal so LDL and HDL will compete for absorption and digestion; one could change their diet; for me to exercise and have muscle burn, all I have to do is miss my meds.

  24. The doctors removed me off clonazepam to fast. I went to the ER room with dystopia . It was hell. And it seemed knowone cares. The 24 of may 2016 after been reduced from 4mg of benzo drug then going to one mg. I was hit in the head some years ago. I was told we got to get you off the drug. I certainly didn’t know why. I guess the reason was they can just like the Nazi and the hell they placed on the Jews. Ignorance, and don’t give A dam for another human life. 6 months now, severe hell,anxiety, sick,fever like conditions, lose of memory.insomia, I allways took medicine as directed after 15 years they say it’s for short term use, then they strip of the vey drug they gave and tell it wil harm, not thinking of the after math dystopia is just one thing of many for me.

  25. I’ve had muscle spasms in my fingers and thumbs for a couple of years, they keep locking in abnormal positions, hurts a little bit but only until spasm has gone. Since last September, fingers on my left hand started to adopt what initially looked like Dupyutrens contraction but it’s now Focal hand dystonia, extremely painful initially and very swollen, my fingers are now dislocated and dig into palms of my hand. Apparently no cure. Can Statins cause this condition? I’ve been on Atorvastatin for a number of years.

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