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
24 Answers Page 2
so sorry to hear about your diagnosis, but sometimes it is good to know what you a re dealing with. i am pretty new here, too, but this looks like a really supoprtive group. i too have the lip and tongue biting in addition to a bunch of other stuff. it gets very frustrating. teh studies on vit e sually recommend a much higher dose. there are some studies showing that manganese can be effective, btu this can have sdie effects of its own. it seems nothig is perfect. i personally ahve taken 2000 unts of e for 2 years. i dno't really think it is helping but i belive it is very safe and hope that maybe it's slwoing things down from progressing. my doc tried amantadine and cloanzepam, neitehr of whihc helped. he wants to try baclofewn next, but that's just another muscle relaxer so i don't have much confidence in it. i just started taking manganese. i am pretty open to tryign these nutritional kinds of things becasue theya re generally lower in side e ffects, though not everyone feels that was about e any more. good luck to you, and hang in there!
Hi Lisa,
Funny how we get to know each other. When I saw your diagnosis I remembered Delila had it too. Nice to see you have others that can help you. I myself don't have it but my mouth burns all the time. Sometimes stronger than other times. Mine is also caused by my meds, I believe it is the Lithium. Although it was getting better when I got surgery to removed my cancerous thyroid I became hypo and it really burns right now. It's annoying that is for sure.
Well take care of yourself and I think a night guard would help for your headaches for sure. I have TMJ and have a nightguard. I use it when I know I'm clenching and getting too many headaches.
I have been offline a few days so I'm sorry it has taken so long to reply. Some times I get so much pain and headaches I have to just shut down for awhile. Saturday night I went to a dear friend's daughter's cancer benefit . I really had to show my support especially for someone much worse off than me. Then Sunday I had a speaking commitment at a women's rehab which can be difficult but always uplifting. Of course I had to push myself to go watch the Superbowl at my friend's house (Yeah Giants!) I just couldn't miss that. So all that activity really wiped me out and had me in major pain. See, my symptoms stop when I sleep, it's only when I'm up and about and especially if I get stressed that they get worse. Thank you all for your helpful suggestions, I did join the tardive dyskinesia group on this site but I seem to be getting more replies from the general audience.
I am thinking my condition was caused by abilify as I was on that for awhile and my neurologist made a point of telling me that it is one of the biggest risk causing agents for TD (in his experience). I have also been on seroquel and had to stop it for the same reasons the poster above stated. But that was different, it did only happen at night. I have tried a mouth guard during the day when I am by myself, like now on the computer. It helps a little but because of the grimacing it tends to irritate after awhile. I never took haldol but I have been on many of the psych meds on the list over the years. Thank you all so much for your wonderful suggestions and caring support, you have all made such a difference in my ability to cope. My advice to you is please research any meds you take thoroughly (my doctor never adequately warned me of these side effects). If you are considering or are taking a med that can cause this condition please reconsider and discuss an alternative with your doctor. I know sometimes we don't have a choice, but please be careful. May God guide you and hold you in the warmth of His Grace. Please continue to keep in touch. And I wish all of you relief from whatever pain you may suffer. Lisa Z
Hi Lisa, glad you on top of things with your doc, meds etc. Prayers are with you, stay in touch please, hugs, mindy
Hi Lisa, sorry it took me awhile to answer as I have been trying to remember the name of a drug. I worked in mental health for many many years and recall seeing the effects of certain drugs producing what you describe, and seeing it in client histories written by the docs. Haldol is the drug I recall that had that side affect and could ocur way after taking it. If that doesn't ring a bell, google "haldol" and go to wikipedia and see all the other names that drug has gone by... I hope this sheds some light on your dilemma, prays are with you, mindy
Hello & welcome to the site. I don't personally know anything about this disease, but you have my heartfelt support. I have seen this with people & never knew what caused it. If you click on the disease name right on your question highlighted in blue, it will take you to the support group for that disease & how to join it, & other members who either have it or know about it. I believe there are 23 people there. Might be worth your while to check it out. I wish you well...
Do you know which medication you were on previously that caused the tardive dyskinesia? If you do a google search of tardive dyskinesia support group, you will get a long list. It is ok to be on a support group here as well as one specifically for what you have. I googled tardive dyskinesia and that is how I learned that certain medications cause tardive dyskinesia (tardivedyskinesia.com). You are probably correct that the grinding of your teeth and your jaw clenching are causing your headaches. When I am in a lot of pain, I too do the jaw clenching and get nasty headaches. Do your research on google or any other internet search engine and learn all you can about your codition and what meds are best for it. This has to be a disheartening situation for you. Feel free to friend me. Blessings and prayers coming your way. Rollerskater
My TD was caused by the medicine called Latuda. It was prescribed by my psychiatrist.
Hi, i'm glad to see that you have had a lot of support already! I suffer from TD, the most relevant effects i get are tongue (and inside of mouth) biting, teeth grinding, and body jerking, sometimes quite excessively. I am lucky though, that i only suffer the symptoms when i am tired, or relaxing just when i'm going to bed. I know the cause is the Seroquel i take. My dentist is going to fit me for a mouth-guard to wear at night, which will help to stop all the damage i've been doing to my mouth and teeth. I sleep alone so the jerking isn't a huge deal for me, luckily i can put up with it. Maybe the mouth-guard would be an idea for you too? If you ever want to talk, feel free to PM me : )
Thank you so much for this question! I have been doing this same thing and had no idea it had a name. As I type this Im fighting to not destroy my tongue any worse, and yes, it's extremely painful. My Dr. took one look and advised to use Sublingual B-12 everyday with a minimum dosage of 2500 mcg. It helped immediately. I also get xanax for anxiety that slows it down a bit. It gets so bad that i end up with deep cracks on the top of my tongue and deep gouges along the sides and underside. I can barely eat or drink at this point. Using a straw helps some to drink. My teeth ache terrible from my constant pushing on them. I just thought I am a neurotic mess. I also chew at my lips so badly that I'll have them chapped for a half inch all the way around my mouth. Please, if you find an answer, post it. And again, thank you, I don't feel like such a freak, I thought I was the only one doing this to myself.
Are you aware of it while you're doing it? I don't know it till Im bleeding. If im stressed I can do alot of damage fast. Oh, and yes, I absent mindedly pick at any bump i can find. Is this a neurologic thing or a psychological thing? Even the muscle of my tongue is sore. Im a Lisa too, maybe it's all in the name!!
floundering, I am so glad that I could help you just by telling you my experience! Your symptoms mirror mine almost exactly. I am going to discuss the Sublingual B-12 with my neurologist. I read your profile and another question you asked and I am concerned about your aneurysms (sp?) and whether or not they have anything to do with the TD. I friended you so if you'd like to talk privately we can. Or just commeni on this post. You should read my profile and see if we have anything else in common. TD is usually caused by taking different neuroleptic, antipsychotic or gastrointestinal medications. Now or in the past (hence yhe word "tardive" which means that it can occur many years after the medication has stopped. If you feel comfortable, provide me with a list of any of these types of meds you have taken before and we can compare notes and research if you have in fact, been exposed to it.
I do believe the Librium is helping me more than xanaxor Klonopin besause it also has a muscle relaxant component. I am seeing a neurologist who specializes in movement disorders and he has been helpful so far.But beware I suffered alot of mistreatment before I found someone I think I can trust (the first neurologist told me it was just anxiety and I should take a yoga class)! My primary prescribed me some special mouthwash called FIRST-Mouthwash BLM and it does offer some relief. As far as I know fhis is definitely a neurological disorder, not psychological or behavioral. Do not let them downplay your symptoms or the seriousness of this disorder as they did to me while it was getting worse and worse. I would love to keeo helping you with support, advice and hopefully solutions, so PLEASE keep in touch, I know the pain you are going through and I will pray that we can find some relief. Lisa Z
Hello lisajznj. Having Tardive Dyskinesia is far from having a pity party. I've seen this diganosis and its a hear breaker. You deserve all our support,pledge
"hear breaker" ... heart breaker
Pledge, thank you so much for your gentle words and support. Please keep me informed if you hear of anything that may help me. If there is anything at all I can do to help you, please let me know. Thank God for this website it is starting to make me feel human again!
Thank you Lizajznj. Lots of support, caring and knowledgeable people through out this site. Welcome and have a great weekend,pledge
Hello my friend,
Just to let you know you have my full support.
God bless,
maso-I am amazed at your generous heart and willingness to offer support even without answers. Sometimes it is not a solution I need but mere words of encouragement. Thank God for putting people like you in my path to help me cope and continue to seek hope in what sometimes feels like a hopeless situation. What a gift you have given me! Lisa Z
You have touched my heart with your kind words... thank you.-
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)
Similar questions
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.
