Posted: Sat Apr 22, 2006 9:50 pm Post subject: RLS IN FACE?
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Hello everyone.
I know this sounds very strange, but I think I might be having RLS symptoms in my face. It all started about 4 months ago. Tingling in my forehead. It was a weird tingling, itching, pressure feeling with an urge to move or touch it to relieve the awful sensations. This has continued for months. I became so depressed that I started to take Prozac to help me deal with it. Four days after starting the Prozac, I started to have the most intense sensations in my legs (burning, aching, then turned to tingling and a feeling of worms crawling deep inside the muscle) and knew it was RLS. I went to my doctor and it was confirmed.
My question to you all is can RLS be felt in the face? Has anyone else ever had this in the face? Can RLS start in any body part or does it always have t start with the legs first?
Over the months, the sensations spread from my forehead to my brows, and even affects my nose and left cheek sometimes.
Any help would be great. I am at the end of my rope.
RLS IN FACE?
RLSgirl,
I have had tingling in my forehead and cheeks before too. I also get it in my neck and throat area along with a twitchy sensation. I do not think RLS has to start in the legs. Mine started in my feet and progressed up my legs. I also have sensations in my arms, hands, back, and abdomen.
Some antianxiety and antidepressants can make symptoms worse. I also am taking an antianxiety because the symptoms can be unsettling. I have not seen an increase in my symptoms, I don't think?!!!
Good luck!
Laura
I have had tingling in my forehead and cheeks before too. I also get it in my neck and throat area along with a twitchy sensation. I do not think RLS has to start in the legs. Mine started in my feet and progressed up my legs. I also have sensations in my arms, hands, back, and abdomen.
Some antianxiety and antidepressants can make symptoms worse. I also am taking an antianxiety because the symptoms can be unsettling. I have not seen an increase in my symptoms, I don't think?!!!
Good luck!
Laura
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RLSgirl
Wow. Thanks for your reply. These sensations have been driving me INSANE. Literally. I started taking .5 mg of Klonopin twice daily when the leg symptoms started and it has helped settle my anxiety over the whole situation. My legs have improved since stopping the Proac and starting the Klonopin but my facial sensations remain.
You said that you get it all over your body...Does it happen all at once or does it move from one part to the other? Also, do you take medication? Do you think it's possible for a medication to ease symptoms in one area and not the other? I mean, I have the face thing EVERY DAY. It varies in intensity, but it is NEVER gone. It's worse as the day progresses. The Klonopin did seem to have a good effect on it the first few days I took it but then the sensations were back as strong as ever.
Anyone else who has experienced this in their face, PLEASE respond. I am at the end of my rope. In 3 weeks, I am actually going to be flying 1500 miles to see a specialist in movement disorders to get this face thing diagnosed and hopefully treated. Seems the options at this point are facial RLS, sensory tic, or pre trigeminal neuralgia. So, any help from you guys would be great because it could lead me in the right direction and I could share it with my doctor.
You said that you get it all over your body...Does it happen all at once or does it move from one part to the other? Also, do you take medication? Do you think it's possible for a medication to ease symptoms in one area and not the other? I mean, I have the face thing EVERY DAY. It varies in intensity, but it is NEVER gone. It's worse as the day progresses. The Klonopin did seem to have a good effect on it the first few days I took it but then the sensations were back as strong as ever.
Anyone else who has experienced this in their face, PLEASE respond. I am at the end of my rope. In 3 weeks, I am actually going to be flying 1500 miles to see a specialist in movement disorders to get this face thing diagnosed and hopefully treated. Seems the options at this point are facial RLS, sensory tic, or pre trigeminal neuralgia. So, any help from you guys would be great because it could lead me in the right direction and I could share it with my doctor.
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ViewsAskew
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I bet you are at the end of your rope. Have you tried a search, RLSgirl? I know I have seen some posts about the face thing, but I can't remember where (I read too many RLS boards!).
I read recently that regardless of the side effects, that the dopamine agonists literally work for 99+ percent of everyone with RLS. The doctor being interviewed said that if a dopamine agonist didn't work, then it wasn't RLS.
Now, I'm not sure about that, but he's a doctor/researcher, so I'm sure he knows more than I by far. So, assuming he's right, taking Mirapex, Requip, Permax, etc. should make it go away if it is RLS. I guess you could look at it like a test. If it doesn't go away, then you'd have some knowledge at least about what it wasn't. Of course, I have no idea how correct this doctor is. I do know that the DAs work for about 80% of those with RLS, but that is because the others can't take it because or side effects or augmentation.
I read recently that regardless of the side effects, that the dopamine agonists literally work for 99+ percent of everyone with RLS. The doctor being interviewed said that if a dopamine agonist didn't work, then it wasn't RLS.
Now, I'm not sure about that, but he's a doctor/researcher, so I'm sure he knows more than I by far. So, assuming he's right, taking Mirapex, Requip, Permax, etc. should make it go away if it is RLS. I guess you could look at it like a test. If it doesn't go away, then you'd have some knowledge at least about what it wasn't. Of course, I have no idea how correct this doctor is. I do know that the DAs work for about 80% of those with RLS, but that is because the others can't take it because or side effects or augmentation.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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RLSgirl
Ann,
I have searched the net quite a few times and have seen on a few different sites that "very rarely" it can affect the torso or face. So, I guess going by that, it is a possibility. There isn't much info on it, though. It's so frustrating. I can't wait for that appointment. This docotr is so busy, I have had to wait 4 months to get in.
I am scared to try requip or the others for fear of augmentation. I couldn't bear it if it got any worse! Thaks for the response. I feel so isolated and alone.
I have searched the net quite a few times and have seen on a few different sites that "very rarely" it can affect the torso or face. So, I guess going by that, it is a possibility. There isn't much info on it, though. It's so frustrating. I can't wait for that appointment. This docotr is so busy, I have had to wait 4 months to get in.
I am scared to try requip or the others for fear of augmentation. I couldn't bear it if it got any worse! Thaks for the response. I feel so isolated and alone.
RLSgirl,
I just wanted to answer the question about where my symptoms occur and when. I can have symptoms in my right leg one night and the next night it is in my left leg. I don't always get symptoms in my back and face, just occassionally. So it varies alot. I hope you get some answers. I know how much anxiety these sensations can create. You're not alone. I too am not real thrilled about starting a medication like requip after hearing some of the horror stories about augmentation. I did take klonapin for ~ 1 month for the anxiety and to help me sleep. I am now only on an anti anxiety Lexapro. I hope to get off that soon, but I don't know. I still have breakthrough anxiety even when on it. It seems to correspond with hormonal changes. So does my RLS symptoms incease with hormonal changes, I think.
Remember you are not alone. There always someone here to listen.
Laura
I just wanted to answer the question about where my symptoms occur and when. I can have symptoms in my right leg one night and the next night it is in my left leg. I don't always get symptoms in my back and face, just occassionally. So it varies alot. I hope you get some answers. I know how much anxiety these sensations can create. You're not alone. I too am not real thrilled about starting a medication like requip after hearing some of the horror stories about augmentation. I did take klonapin for ~ 1 month for the anxiety and to help me sleep. I am now only on an anti anxiety Lexapro. I hope to get off that soon, but I don't know. I still have breakthrough anxiety even when on it. It seems to correspond with hormonal changes. So does my RLS symptoms incease with hormonal changes, I think.
Remember you are not alone. There always someone here to listen.
Laura
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ViewsAskew
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Oh, I wasn't specific enough - I meant a search of this site or even of the other RLS boards. I know some people have posted here, there, or somewhere! Could be Sadiegirl and just one or two others, but I know I've seen specfic posts on these RLS message boards. There is a search function on this one and on the Yahoo boards.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
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cornelia
RLSgirl,
I did have RLS in my face, before I started on medication, and have it seldom now.
Why don't you try the DA's? You might just as well not experience augmentation. If you have tried, you can tell your neuro how it worked or not worked. If he uses the RLS Algorithm, than he will start you on a DA anyway.
My opinions is that in order to get the right medication, you have to experience with meds usually.
Good luck, Corrie
I did have RLS in my face, before I started on medication, and have it seldom now.
Why don't you try the DA's? You might just as well not experience augmentation. If you have tried, you can tell your neuro how it worked or not worked. If he uses the RLS Algorithm, than he will start you on a DA anyway.
My opinions is that in order to get the right medication, you have to experience with meds usually.
Good luck, Corrie
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RLS girl
I am phobic about medication. Really. And I am phobic about this getting any worse than it already is. There are some days that are so bad that I feel willing to do ANYTHING to make it better, but most days I try to stay strong and realize that this is so bad that I CANNOT take a chance that a med could make it any worse. I'm talking in circles, I know, but I hope I'm getting my feelings across.
I did a site search and found a couple references to rls in the face, so thanks for the suggestion to do that. I geuss it's not a common feature but it does happen. I just can't figure out why it would start in my face and not my legs. Of course, looking back I do remember just a couple of times when my legs had a restless feeling in them. But it came and went very quickly and was more of a generalized feeling rather than the wormy and tingly feeling I get now.
I just sit here and cry when my forehead gets really bad. This morning I actually saw a contraction/twitch that lasted a second or so on the right side of my forehead, accompanied by kind of an electrical sensation. This has happened a few times before. Is that part of RLS, too? I have also gotten twitches in my legs, even w/o the sensation there.
Any additional feedback would be great. I feel very alone and scared.
Thanks.
I did a site search and found a couple references to rls in the face, so thanks for the suggestion to do that. I geuss it's not a common feature but it does happen. I just can't figure out why it would start in my face and not my legs. Of course, looking back I do remember just a couple of times when my legs had a restless feeling in them. But it came and went very quickly and was more of a generalized feeling rather than the wormy and tingly feeling I get now.
I just sit here and cry when my forehead gets really bad. This morning I actually saw a contraction/twitch that lasted a second or so on the right side of my forehead, accompanied by kind of an electrical sensation. This has happened a few times before. Is that part of RLS, too? I have also gotten twitches in my legs, even w/o the sensation there.
Any additional feedback would be great. I feel very alone and scared.
Thanks.
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cornelia
Yes, the electrical feelings are typical of many types of RLS.
I have felt them everywhere, but not in my face: sounds not very nice to say the least.
I really, really think you must talk openly to your docter. About your phobia for medication too. You need to overcome this, because I am sure meds will help you to combat these RLS-feelings.
Please vent away whenever you want to, there are lots of nice people here who will listen.
Corrie
I have felt them everywhere, but not in my face: sounds not very nice to say the least.
I really, really think you must talk openly to your docter. About your phobia for medication too. You need to overcome this, because I am sure meds will help you to combat these RLS-feelings.
Please vent away whenever you want to, there are lots of nice people here who will listen.
Corrie
I also have twitches that I can see. I have them in my feet, calves, thighs, hands, arms, back, abdomen, and face. That is the most unsettling part of this and I thnk it is because it is not part of the definition of RLS. I did find in the MEDIA section of this Website under the "More about RLS foundation" heading (which you will find on the first page of this website) where twitching is mentioned as part of this syndrome.
I started taking a magnesium/calcium supplement which has helped the twitching a little, however, I still have them. I know how you feel about being alone and scared. But you are not alone. I hope that hearing that someone else has your same symptoms is helpful. I know I have searched and searched this website and others looking for someone who also has twitching. I am able at this point to tolerate my symptoms without medication. I have klonapin just in case I have a bad night. I hope you can talk with your doctor openly and honestly so you can get something to ease your symptoms and your anxiety.
Laura
I started taking a magnesium/calcium supplement which has helped the twitching a little, however, I still have them. I know how you feel about being alone and scared. But you are not alone. I hope that hearing that someone else has your same symptoms is helpful. I know I have searched and searched this website and others looking for someone who also has twitching. I am able at this point to tolerate my symptoms without medication. I have klonapin just in case I have a bad night. I hope you can talk with your doctor openly and honestly so you can get something to ease your symptoms and your anxiety.
Laura