I had RLS last year. It took about 6 months of taking Requip (max. dose) for it to calm down. I still have restless feet. I now am experiencing something very weird ! I cannot keep my mouth and tongue still 🙁They are moving constantly and I can't seem to stop it. Has anyone ever heard of this ? For a while I thought it was habit, but it seems to be getting worse !! I just don't know what to do ?????
Can't seem to keep my mouth and tongu... - Restless Legs Syn...
Can't seem to keep my mouth and tongue still !!!
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Bettyboop71345
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What drugs are you currently taking? Some drugs cause issues similar to what you are explaining.
This has been going on for sometime. But lately it's seems to be getting worse. I've been on the same meds for quite awhile. I have recently been diagnosed with Sjogrens Disease. But started on new meds two days ago. This has been happening for some time. There is something on Google about Restless Mouth Syndrome !! I just wondered if anyone who'd had/has RLS had ever heard of this ??? Since I had it last year I wondered if there was any connection ?
in reply to Bettyboop71345
Hi!
I’ve never heard of restless mouth, but I do have restless legs. Sometimes anti-psychotic meditations can cause symptoms with your mouth and tongue. I would see a doctor about it sooner rather than later. I hope you figure it out!
I suspect Augmentation. You say you are on the maximum dose of requip. That is now 1mg, but I would imagine you have actually been given a higher dose.
When I was augmenting on Ropinirole ( same drug), the RLS moved to my arms, back, hands and then my face.
You say you still have restless feet and your mouth is getting worse, so I would blame the requip.
Read all you can about Augmentation on here and see if it rings alarm bells.
Jools
Hi bettyboop,
Me again. I see you posted on the Sjogrens site that you suspect you had the disease due to extreme dry mouth etc. That started around the same time that you were put on the maximum dose of requip.
I also used to have dry mouth and eyes when taking Ropinirole ( requip). It is listed as a rare side effect. I suspect you are hyper sensitive to requip, hence the dry mouth which started at the time you were putting on the maximum dose. It would also explain why you now have restless mouth - you are probably augmenting faster than usual.
Have you tried any other drugs for RLS on the past or is Requip the first med you have been given?
Anti histamines and anti depressants can make RLS worse too. Also get your serum ferritin checked as Augmentation happens faster if you have low levels. It needs to be above 100, but normal levels for other people is anything above 15.
Jools
No, I was on Requip last year when I had RLS. Haven't taken it since then !!
I’m sorry. I thought you were still on requip. If you’ve been off it since last year, unlikely to be Augmentation.
How did you manage to stop the RLS?
The RLS seemed to gradually subside while taking max. dose of Requip. Had to gradually wean off.
Hi Joolsg
Just for information and not really on topic.
You might not have seen my recent post about ferritin levels and Doctor Buchsfuhrer's latest opinions. I don't know how to link it so I will just paste it below. Sorry to clutter the forum with repeats. I add the note that in Australia the normal range quoted by on large Pathology lab is 35 to 500 so the values mentioned here would seem to be quite safe. Of course our advice to anyone reading this is to check with your GP in case there is some medical reason why you should not be taking extra iron
Iron and Doctor Buchfuhrer
20Jun18
We have learned a lot about iron absorption and iron therapy for RLS in the past few years.
When we quote the goals for iron therapy, it is based on only 2 studies that showed a benefit from oral iron therapy when the serum ferritin is brought above 50-75. That was the guidelines for those studies and they did not look to see if higher levels brought further relief of RLS symptoms. Furthermore, it is very hard to get serum ferritin levels much above 100 with oral iron therapy.
Now that we have been doing iron infusions for RLS for a few years, we have gained additional knowledge. We find that some patients need to get their ferritin levels above 200-300 in order to drive enough iron into the brain (the best way to find out how much iron gets into the brain would be a spinal tap but that is of course not something we would do very casually or routinely). However, we would recommend keeping the ferritin level no higher than about 350 in order to avoid issues with iron overload which could effect organs like the liver, kidneys and heart. Therefore, an iron infusion with a goal of getting your ferritin between 250-300 could be very helpful. You should also be aware that only certain iron formulations (INFeD and Injectafer) are beneficial for RLS patients.
Ferritin tests can be fairly reproducible (and it is likely not a lab problem that causes variation) but must be done fasting without any excessive iron intake for the previous 24 hours. The other issue is that ferritin is an acute phase reactant so it may stay falsely high for as long as a month after inflammation (such as a bad cold). A low ferritin is always an accurate result while a high level could be falsely high.
This is not a reply but just a quick question, I have been an honor student from grade 1 every year until graduation and I took advanced classes for math and physics and biology and I know where have seen that iron can improve RLS because it does not have anything to do with the cause of RLS which is lack of dopamine or the inability to absorb the body's dopamine in a high enough level and usually when your dopamine drops too low if you do not replace it somehow or make your body absorb it with a reuptake inhibitor I think it's called you will continue to have RLS and the only solution I've heard of but was told is not available to me because of the seriousness of the drugs that replace the dopamine and give you extra are only short-term treatments and when stopped the RLS will return and usually even worse than before so they do not prescribe it for that reason as you would have to be on it for the rest of your life. Could you explain what you know on the topic to me as the only thing I found that worked for me was boosting dopamine by taking two Tylenol number ones because they contain opiates or codeine I should state in 8 mg per tablet and I take two before bed and when my RLS was severe I used a TENS machine like the one Doctor ho has listed on television and is selling for around $100 to $130 but it's the best for you because there are no side effects or medication interactions and the two Tylenol ones give you enough boost to the dopamine that you do not get high from it or even feel a buzz or euphoria or anything addictive but it is enough to increase the dopamine to the point where that combined with the tens will allow you to fall asleep and enjoy sleep for most of the night for most people. The only thing is you need to taper slowly off the TENS machine unless you enjoy using it nightly getting tangled in the wires and stuff but when you're ready to try and get rid of the RLS you less in the strength of the tens power setting and once you reach virtually nothing stop it totally then do the same with the two pills take time for a few months then drop one and then take one for a few months then drop that and if needed start taking half of one and take that for a while then stop and hopefully it will have gotten you through the most awful condition I can imagine and have gone through and would rather be waterboarded regularly then to have RLS because it virtually makes you feel like you're going to lose your mind and I even went to the lengths of creating a suicide kit that I hid in my house and was waiting for the proper time when I would have committed suicide but with everyone around me helping me and my girlfriend's mother when she said to try the tens I thought this won't do a darn thing and it's a waste of time but when I tried it that night I got my first night of full sleep in almost 3 months. Anyway good luck and let me know if you have info that is more scientific about what causes RLS and what you need to do to remedy the situation and feel free to use chemistry terminology and doctors terminology in how you explain it if you don't wish to dumb it down for me because I don't need that as I've always had a big interest in prescription medications and chemistry so I will understand what you're saying even though I may not be able to say it myself the same way I understand it just can't speak it. Much love and I'll say a prayer for you.
Unbelievable RLS treatment device
Hi Im not a medical person so I have to rely on others for any scientific input. I just experiment on myself and pass on information that I read and think is sensible.
I dont believe that the medical people have much idea about RLS. I think thewre are many causes that have RLS as a symptom. This would explain why I treat myself with no drugs and have long periods of zero RLS. Other people do thew same thing as I do and they get no relief. My RLS appears to be food related but diet doesn't seem to help many other people. I dont try to understand how it works because I dont want RLS to occupy my whole life. You have to work a bit harder than non-RLS people to have a good time. When it was bad it took a lot of effort to keep smiling and I fully understand how you can get really low but there are things that work for many people so you just have to keep trying lots of ideas until you find something that helps you.
I'll send a private message with a few ideas you might not have tried. Remember if you try the diet it might take a couple of months to feel the real benefits and you have to stick with it ruthlessly. For example caffeine is a problem for me so I switched to decaf coffee. After a while my RLS came back and I decided to go the whole hog and have only drunk hot water for a couple of months and my RLS has gone away again.
That's the cheapest and easiest fix you can get.
Hang in there and give one of the diets a try.
You poor soul, this sounds really horrible. I agree with several of the others that it is likely to be related to medicines you are taking, a common type being various antipsychotics but in the context of severe RLS then augmentation from requip. You should ask for urgent specialist advice. Of course you probably know you can't stop requip suddenly.
See a Movement Disorder Specialist. I have oro mandibular dystonia. It's treated with botox.
I did...he put me on oripinole (spelling) not Botox ??
This seems to happen to me as well
See a Movement Disorder Neurologist !!
It's called oro-mandibular dystonia. get too a Movement Disorder neurologist. They will be the only ones that can diagnose it.
I just came across this post
He will be able to tell you in 5 minutes w/o running any tests.
I hope you are better.
Yes I saw the Specialist..And yes that's what it is. But he put me on rOPINIRole..So far it hasn't stopped it !!
Then why don’t you contact the specialist to tell him/her that and request a follow-up consultation???
Yes, I plan to !! Ty...
I can’t believe I saw this. I have been having this same problem for 6 years. I can not stop moving my tongue and mouth. To the point my inner gums and the roof of my mouth feel sore!! Is it a tick or habit??
Bettyboop71345 in reply to
I've been diagnosed with Dystonia..A movement disorder. See a Movement Disorder Specialist ASAP...
in reply to Bettyboop71345
Ty. I told my psychiatrist Today about this tongue thing. It drives me nuts. I started Gabapentin today. Then next week they are going to put me on Intuniv for ADHD
Ok ty. This can just add to my ocd, add and anxiety attack. Omg what next. I got to laugh. Is it serious?
Bettyboop71345 in reply to
It's more of an annoyance for me...I know I have various conditions myself😳
Did any medicine help your moving tongue thing?
Bettyboop71345 in reply to
Not really😳 I was prescribed ropinirole, but it hasn't helped..In fact, my restless leg syndrome is back⁉️I can't see this Doc until January🤯
in reply to Bettyboop71345
Ugh. 🤪 it’s weird I only do it if I’m not doing something.
Bettyboop71345 in reply to
I do mine, pretty much, constantly..I think the next step would be Botox injections.
in reply to Bettyboop71345
But how would Botox help your tongue. What Did the neurologist say about it? Is it dangerous??
Lapsedrunner in reply to
Botox is a neurotoxin that’s used to weaken muscles. The tongue is a muscle.
But my mouth actually gets sore from it.
I don’t know what you have but I know that anti psychotic drugs can cause this. They call it Tartive Dyskinesia. But you said it was dystopia. So I must have that. 😗 I never took psychotic drugs. However here is my story 🙃
I had ADHD and OCD all my life. When I was 24 the ocd and ANXIETY ATTACKS were severe so I was put on Prozac (ssri drug)which worked awesome for 10 years then I became immune. So then I did Paxil. Etc. now I am 48 and I just started gabapentin. This is supposed to help my anxiety. I can also say that when I was in grade school I had severe eye blinking. We just said it was a tick. It went away on its own. I thought maybe this mouth thing was the same just a tick. But it has been 6 years. So thanks to you I am getting man make an appointment with a neurologist. Very scared!!😔
Bettyboop71345 in reply to
Don't be scared...Seek professional help. Perhaps a Neurologist to start off with.They could refer you to a Movement Disorder Specialist if they seem it necessary. Try to meditate to calm yourself. Keep me posted🦋
in reply to Bettyboop71345
Yes I made an appointment.
Dogdoo in reply to
I was put on gabapentin by my psych for anxiety and it works great.
I take 600mg 2x a day then 1800mg at bed.
in reply to Dogdoo
Wow. Great to know!! Ty I just started so I am only on 200 mg twice a day. They the dose has to get much higher. How would you say it effected you? Are you just more relaxed during the day? I so glad you replied to my post. I feel much better.
Bettyboop71345 in reply to
Some days better than others 🙁
I too take Gabapentin 600mg 3xdaily.
in reply to Bettyboop71345
Oh you do. Do you find it helps? Any side effects?
Bettyboop71345 in reply to
No side effects. But some days the anxiety seems to be worse...
in reply to Bettyboop71345
But in general it lowered your anxiety? I take Xanax at night to sleep. As soon as my head hits the pillow of course my head starts thinking. I never shut off. But any way I want to get off the Xanax. I take so much to go to sleep.
Ty for your responses!! 😝
I know. But they would put the Botox was n your tongue.
Bettyboop71345 in reply to
No, they inject you under your chin..
in reply to Bettyboop71345
Good to know.
I am suffering the same.I have an urge to move tongue inside my mouth everytime hope that it goes away by time
Some antipsychotics suck as olanzapine or halcion and other medications can cause a disorder called tardive diskenesia.
What it is Overview: A condition affecting the nervous system, often caused by long-term use of some psychiatric drugs. Tardive dyskinesia is caused by long-term use of neuroleptic drugs, which are used to treat psychiatric conditions.
People may experience:
Common symptoms: involuntary movements, lip smacking, or repetitive movements. Also Tardive dyskinesia causes repetitive, involuntary movements, such as grimacing and eye blinking. Or tongue swelling or stiffness/rigidity and repeated semi involuntary or subconscious movements of parts of the body like twitching or flexing particular muscles repetitively and so on.
Would you be on or diagnosed with any psychiatric conditions or medications? Also the sooner you seek treatment the easier and more success you will have in correcting these issues if so.
Sorry been out of pocket for a while. Yes I do have TD and am on Austedo w/o huge results.
I will keep this short and sweet because I've been known to be too descriptive but I always believed it's better to have all the information and make little to know mistakes then to have too little information and make a big mistake that you cannot undo. I know that if you are on any medications such as antipsychotics which can be called mood stabilizers or pills for bipolar or any type of mental disorders like schizophrenia or things similar requiring medication to treat, well a lot of these medications cause ticks or repetitive behaviors like you are speaking of as a side effect. There is a name for this tick or urge to move the tongue and mouth but it can be any body part depending on the person and the drug and what feels best to the person and they are only semi-conscious movements because you can stop them if you try hard enough but the minute you take your mind off of keeping still The tick returns or twitch whatever you call it. I don't think there is a fix for it because I was put on olanzapine AKA zyprexa at age 20 for drug induced psychosis and then diagnosed later on after withdrawal and sobriety that I had schizophrenia and that is why I'm on this medication. I developed a tick or twitch where if I twitch my left bicep twice I have to do the same on the right side or I don't feel right until I do it or if I flex the back of my leg behind my shin I'm not sure what the muscles called but if I did it three times on the right it must be done three times on the left before I can forget about it and this tick is known to happen a lot with these medications but you did not describe what you're taking if anything. I have gone too long without asking my doctor about it and I just let it happen and ignored it but I've waited too long to fix it because the only cure I know of and researched and found out about it myself was to stop the medication causing the twitches or awkward movements or repetitive movements and the sooner you stop that medication the better the recovery you will have and the more it will go away and quicker it will go away. The longer you leave it or stay on the medication causing it the last chance you have of getting rid of it ever even if stopping the medication. After so long it becomes permanent from what I have read. You can download or try to find an application called the DSM-5 which is a book that psychiatrist or psychologist and family physicians can obtain and use to figure out how to treat certain disorders what medications to prescribe what dosage they should be at for a minimum and maximum and side effects and everything else you could imagine a doctor might need to know when diagnosing somebody. If you purchase the application it's around $79.99 but you can get it modded I will say on the internet and you can sideload it if running Android and get it for free which is basically stealing but somebody will crack the application and it's free to use after that with no ads or time limits or amount of information you can access. I'm not suggesting you do this I'm just saying this is what some people do and I know the DSM-5 has been cracked for Android and is floating around the internet. Anyway I hope this is something that leads you in a direction that achieves the goal you're hoping to fix with your health but I am not trained as a doctor nor do I State you should stop or start any particular medications without your doctor's supervision and agreement. I just wanted to let you know what caused this behavior in me and how you need to stop the medication or whatever is causing you to do this because the longer you wait the more permanent chances you will have of it never going away. Speak with a doctor and tell them because this is not something weird if you Google it you can find the term for what it is called. Hang on I'll BRB... Here is a link I just went and found for you and it seems they refer to it as OCD now or obsessive compulsive disorder depending on what type of repetitive behavior you have because hair pulling and nail biting go under different terms than OCD but when I researched it on antipsychotic medications the name I found years and years ago when I had these ticks and was wondering why I found a different name and definition then listed here but I hope I'm allowed to post this and I hope you can get some information from the site that is more technical than what I can provide you with. Good luck my friend and if you cannot rid yourself of these behaviors ignore others if they make comments or stare because they don't understand and are under educated on physical health and mental disorders and health. People don't look these things up until they are affected by them usually or somebody close to them is experiencing it. The link here is....
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