suffering from this? Not to have a pity party, but these are my symptoms: Abnormal, uncontrollable tongue movements which cause me to rub my tongue against my teeth, causing unbearable pain. lip-biting and pursing and smacking lips (very unsightly and also very painful), tightening of my jaw and clenching and grinding my teeth which I believe is the cause of the splitting headaches I endure daily. I have also seemed to have developed (unrelated?) a habit of picking my face. I am now on 40 mg of Librium a day, a 400 iu of vitamin E and 120 mg of Cymbalta a day. My primary has prescribed a special mouthwash that helps a little and my neurologist is recommending Botox treatments. I would just to know if anyone else has this or similar symptoms and how they are coping with the symptoms and also the anxiety, anger and fear that goes along with them. Thanks so much for being on this site to offer support that has meant the world to me. Lisa Z
I have recently been diagnosed (finally) with a severe case of Tardive Dyskinesia. Is anyone else-?
Question posted by lisajznj on 4 Feb 2012
Last updated on 2 September 2023 by Tardivehelpheal
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
24 Answers
I am trying to get some help my tongue sticks out eye blinks walk slow make noise head shakes from side to side. I have seen 5 neurologists need to get tested for tardive dyskinesia have shaking difficulty swallowing feel something sticking in my neck
I am trying to get some help
I have tardive dyskinesia its horrible. I got it from 5 years of taking haloperidol. Teeth grinding, jaw swinging dry mouth dry lips. I researched all drugs to help me and I can't get ingreeza or austedo because my insurance won't pay. I went off the haloperidol then I grind my teeth for 3 weeks straight. I was exhausted and depressed. I began taking amantadine 100mg 1x per day for a month. No help. My doctor put me on Abilify low dose immediacy began feeling better mentally but still had TD. It gave me ability to cope. I know alot of people got TD from Abilify but I also read that if you put a drug in your body similar to the drug that caused TD it might help. This combination worked for me it took about 5 weeks for the amantadine to kick in and the Abilify worked immediacy. I was the same as you sore tongue, grinding teeth, jaw swinging. I just read as much I could about TD and treatment. Its bizarre but this is what got rid of it for me. I wish you the best.
I have all the same symptoms and they are debilitating. My neurologist started me on primo done and gabapentin. Now I have just been approved to take ingrezza. The first two helped slow the symptoms and the ingrezza may take up to two months to really kick in. I have found marijuana edibles to slow it down too. But I live in a state where marijuana is legal. Find a good neurologist. Botox is not the answer.
I also suffer from TD. I take ingrezza to help with my mouth and tongue movement..
I only take it at night so I can try to sleep. In the morning when I wake up it starts all over again. I have put on a lot of weight from eating all the time. I have relief when I eat. I hope everyone is doing better.
I was just diagnosed after 2 years. Abilify was most likely the cause. I was prescribed Austedo and my symptoms were getting much better. Then I was told that my co-pay would be $900. for a months supply. I certainly can not afford that. I guess I will just have to live with this. My mouth and tongue are full of sores. It has taken away all social life. I hope that they will find a way to help us soon.
I too have just been diagnosed and the most likely cause has been abilify. I am new to this group and really looking for some help on this subject. I just want to mention before being diagnosed I had a serious problem with biting my tongue. I kept asking my dentist to file my teeth down. The poor man was like there is almost nothing left to file. Anyway hubby suggested I-Lysine and this was a huge game changer for me. Of course, I have some other problems.
Anyway Like I said I’m new to this group and newly diagnosed. I don’t see a lot of comments but I still have to learn to navigate this site.
I too have just been diagnosed and the most likely cause has been abilify. I am new to this group and really looking for some help on this subject. I just want to mention before being diagnosed I had a serious problem with biting my tongue. I kept asking my dentist to file my teeth down. The poor man was like there is almost nothing left to file. Anyway hubby suggested I-Lysine and this was a huge game changer for me. Of course, I have some other problems.
Anyway Like I said I’m new to this group and newly diagnosed. I don’t see a lot of comments but I still have to learn to navigate this site.
I too have just been diagnosed and the most likely cause has been Abilify. I am new to this group and really looking for some help on this subject. I just want to mention before being diagnosed I had a serious problem with biting my tongue. I kept asking my dentist to file my teeth down. The poor man was like there is almost nothing left to file. Anyway hubby suggested I-Lysine and this was a huge game changer for me. Of course, I have some other problems.
Anyway Like I said I’m new to this group and newly diagnosed. I don’t see a lot of comments but I still have to learn to navigate this site.
You have to live with it but there are other drugs. I'm taking 100 mg amandine it took a month but it helped. I also read if you take a small dose of a different drug like 3rd generation it would help. I was on haloperidol for six years and weaned off. After 3 weeks of grinding my teeth jaw swinging. I called my doctor and he put me on 2mg abilify and it stopped the jaw swinging. I still grind teeth a little bit but if I really focus I can stop. I'm on muscle relaxers and 1mg clonazepam. This remedy worked for me. I also take melatonin and ginko and b12 vitamins and 2000 mg vitamin E I get at pharmacy. Good luck and God bless your. You can message me if you want.
You have to live with it but there are other drugs. I'm taking 100 mg amandine it took a month but it helped. I also read if you take a small dose of a different drug like 3rd generation it would help. I was on haloperidol for six years and weaned off. After 3 weeks of grinding my teeth jaw swinging. I called my doctor and he put me on 2mg abilify and it stopped the jaw swinging. I still grind teeth a little bit but if I really focus I can stop. I'm on muscle relaxers and 1mg clonazepam. This remedy worked for me. I also take melatonin and ginko and b12 vitamins and 2000 mg vitamin E I get at pharmacy. Good luck and God bless your. You can message me if you want.
I forgot to mention if you are interested in Ingrezza, there is $ support, a foundation ( Healthwell Foundation) through the specialty pharmacy that issues it, granted the $900 co-payment after my insurance approved it. I'm not pro medication per se because they ALL have side effects, I'm just at the point where I was willing to re start taking it, hoping it can help. It's a pill I can stop taking, where as Botox, once injected, takes ~3 months to fade.
Aloha
I can’t help but wonder if the Botox will help in in age related issues, if so I would jump on it, just saying. I know this is not a joke just needed to make one anyway! I’ve had Botox and really didn’t feel a thing. My was for cosmetic reasons...
Well I have some 40mg samples of Ingrezza. The specialized pharmacy have referred me for help financially. Fortunately, my household income is too high.
Yes, you are not alone! I re-started Ingrezza at 40 mg because it is all I can tolerate at this point. It used to rev me up, now it's making me drowsy with some urinary retention. I am not on any psych meds as I am 'treatment resistant' and Seroquel was most likely the causative medication. I do use Klonopin and Zanaflex. I was using a nightgaurd prior to the DX. Have your dentist make one, where I am, it was about $100, not cheap, but last more than 3 years for me, and fits much better than a drugstore brand. I was reading the thread and saw sublingual B12, on my shopping list! TY!
I've had baby doses (conservative) of Botox X 2 and didn't feel it helped me. It's always something that can be re visited. It is worse for me as well when I am tired/ overwhelmed.
I am isolating myself because I can't stand the movements and feel everyone else's notices it, which I know is not good for bipolar depression. When I can get out and walk with music on and get in the healing ocean, I always feel better. I'm glad I saw your post, not sure if I had replied in the past. I just try to keep a positive mind and take care of myself first. As a nurse, I feel I have to put everyone else first. As I'm feeling worse and the TD is progressing, I KNOW I HAVE TO TAKE BETTER CARE OF ME.
I have had a psychologist whom I still regard as awesome, the connection just lost its therapeutic advantage. So I've reached out again and finally found another, and it has been stressing me out big time to start over, again, but I feel I have to go through the discomfort ( both physically and mentally) to get through this and stay strong.
Please feel free to message me privately if you want. Support groups in general don't generally work for me, in person or online.
Big (((((*))))) hugs and warm Aloha to anyone that wants one.
I read your post with great interest. It is amazing how many symptoms I am realizing has come from the TD. I never knew that biting my tongue is part of the problem of TD. Oh yes when you are tired it is impossible to avoid all these uncomfortable motions. I go places and I just tell people around me what’s going on and they usually leave me alone. The hardest part is that I own an insurance agency and my staff really started freaking out, but maybe that was a good thing because that’s when I started to realize that I had a problem for sure. And then one day there was a commercial describing the symptoms of TD.
I was in the kitchen and I came running out in the living room I said to my husband that’s what Iexactly what my symptoms are I don’t know if that’s what I have but I know that’s what my symptoms are I can finally understand that and explain the symptoms from that commercial I saw a neurologist and he put me on the Ingrassia and that’s a pretty big help with him I think I’m only on my second week and I’m already starting to get some relief. I would love to private messaging I don’t know how too. Do I need your email or is there something in here that does it? Thank you for being so kind and responding to me I feel so much better knowing I’m not alone so now if people ask I just say oh yeah lots people have the stuff not just me sorry I do you have a sense of humor that’s not that great! Thank you again!
I to have tartive dyskinesia. I didnt know what it was until a doctor appt. My doctor said he saw to much tounge. I didnt know why I was grinding my teeth and my jaw was swinging. I cant get ingreeza insurance wont pay. I sought out some of my own treatments. I had to completely wean off haloperidol. If I went to fast it made TD worse. I'm now on a very low dose of Abilify, amantadine, muscle relaxers, and clonazepam. It took a month but I'm real close to remission. The Abilify worked immediately and the amandatine took about 4 weeks. It was the 3 weeks off of the haloperidol that made me crash then I went on the Abilify that took over immediately. This drug can cause TD also but my doctor did some consulting and we went for it. I just hope it stays in remission. Good luck.
I have been suffering from this for a year an a half... Its unbearable... My muscles twitch all the time. But when i have my bad episodes i curl up in bed my jaw jams shut my legs cramp an twitch an i cant stop thrusting my hips... Those last between 2 hours all the way up to 24 hours... Been having a very rough time lately... I hope yours gets better soon love... If you ever want to talk im here for you... Facebook HEATHER AUGUSTYNIAK pic my brother and nephew..
Hi Lisajznj,
I have all the same symptoms you have except for the lip smacking plus some when I was diagnosed about 4 years ago. I got it from taking risperidone. At least that's what brought it to the surface. My dr told me that it could have been caused by something taken years ago too. I take Valium and Flexeril to help control the symptoms. The movements I am left with after taking them is tongue and mouth movements and a little bit in my hands. On the whole no one really notices these things. It hasn't been easy but try not to get discouraged. I know that's easier said than done. My dr hasn't had much luck prescribing the meds made specifically for TD. Therefore I can't speak about them. I think she feels if I've only got those few symptoms left, the other drugs aren't going to do much better. Especially with the added side effects. I wish you luck in finding something to help you. I really feel there is something that will help you. Don't give up
Ruth
I won't blow sunshine at you. I have all the same symptoms, except the lip smacking and jaw clenching. I have had it almost 2 years. Nothing in a pill has been any real help, since that was what got me here. There is no standard of treatment, it varies doctor to doctor. There are some meds that specifically treat TD, but I had little success with them. With insurance they are affordable, much paperwork, and resistance from insurance companies. Need to have your doctor fighting for you. Without insurance, the Drug Manufacturer's will assist and sometimes pay for the meds. That's my experience thus far.
Yes, I am almost 50 years old and it is a direct result of antipsychotics for me. I had my dentist make a mouth gaurd years ago. I also take 1/2 to 1 (25mg) Benadryl every 4-6 hours, even during the day and 2 (50 mg) at bedtime. Klonopin 1 mg up to 3 x a day (which I don't think I have ever used that much, but I have it if I need it) and at bedtime.I have 2 different muscle relaxers from my pain doctor. I have tried Ingrezza, didn't like how I felt on it, may retry it once my hormonal issues get back into balance. There is a newer med that treats TD and Parkinson's, Austedo, one of the first contraindications is uncontrolled depression and or suicidal. Won't even bother with trying that! And another Xenazine which I'm not even looking into at this point...
Stress reduction, exercise and sleep along with eating regular small meals ( which is extremely hard when you have ZERO appetite) but I notice these things along with symptom management sort of works for me. I tried a Neuro who would only use Botox for migraine the first time; meaning 30-40 spots on face, head and neck. Then he said he could 'tweak it' once he did all sites (typical migraine insurance coverage protocol). I declined and found a Neuro movement disorder specialist... Conservative 1st time, mainly around my cheeks, jaw/ mouth. Maybe 10 shots. 3 months later we went a few more and a tad more Botox. Honestly I did not notice any difference. But if I didn't find her and try it I wouldn't know. It's still an option, just not now for me. You have to take care if yourself even when you don't want to and advocate for yourself. This particular Neuro wasn't taking new patients, per my PCP. So I called on my own and asked, and it was dependant on the diagnosis! Do your own investigating. Find what works best for YOU. And keep on keeping on... Message me anytime and best wishes to all that are feeling tortured and depleted. Because this is my reality and I feel it can only get better... and it's totally fine to have a pity party and complete meltdown... just get back up!
Lisa,
I understand the suppression and silent echo chamber sufferers sit in as well-meaning mental health professionals cringe with discomfort at not being able to help us. I've been in NAMI "Connections" support group meetings where, when my symptoms were obviously alarming the other members, I tried to explain and reassure them I was basically ok.
I was shut down before I could utter the word 'side effect' and admonished later, "You don't want to frighten the other patients, do you? They might stop taking their medications!"
I know your post was a long time ago, but in most cases, TD is forever. It's just a question of getting the right combination of treatments. There is one atypical antipsychotic that is of great help masking the symptoms, but no one promotes it because it's generic and requires tons of regular blood work, but I'd look into it.
Hey I have noticed it getting better when I had to change my Med . The drug that helped me with sleep( manic) is called gabapentin or nuroton. I can’t spell but I can tell u it has help me so much. I also take muscle relaxant and Ativan. O yea nicotine makes it worse. Exercising and stress usually when tired. See the TD is caused by receptors making new paths cause by drugs rerouting them .!i u have the gene u have a higher chance. They lied about who many get it! Not rare!it is hard to treat cause ur brain remembers the path. Which causes the problem. Gabapentin seem to change this . It messes with ur nurions that causes u to remember or learn. This is just my theory. But it really seems to help me. Hope the helps
Hi Lisa. I’ve been dealing with Tardive Dyskinesia for awhile now too. I tried a new drug called Ingrezza. It just came on the market last year. Unfortunately it did not work well for me. I also chew on my lips and move them, grind my teeth and have a problem with tongue movements. I make facial grimaces and have problems with keeping my fingers still. Though the medication was some help with the facial symptoms, it didn’t stop them completely. I became very restless and wasn’t able to sit without moving. I finally decided that the side effects out weighed the benefits. You may want to look into it though. It isn’t dispensed at regular pharmacies. It goes thru a specialized pharmacy called Pantherx. I was eligible for financial aid from them and had no copay.
I know how difficult it is to deal with the symptoms. I’ve found that mine seem to get worse when I’m stressed or anxious. And they seem to be getting worse, so I’ll keep on investigating options.
I hope this helps. Jodi.
I have the exact symptoms
Related topics
cymbalta, tardive dyskinesia, pain, tongue, lips
Further information
- Cymbalta uses and safety info
- Cymbalta prescribing info & package insert (for Health Professionals)
- Side effects of Cymbalta (detailed)
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