Patient letters on RLS symptoms and remedies- Page 48

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I have had RLS my entire life.  For the past 4 years I have been taking Mirapex.  I take 3 of the.25 tablets each night.  I also take imipramine for panic disorder.  I have tried every antidepressant out there to find one more compatible with RLS, and I have not been able to tolerate most of them.  Wellbutrin made me so sick, and Remeron made me incredibly groggy and drunk feeling.  I didn't dare drive a car. 

Anyhow, I'm wondering if I need to find a more compatible antidepressant, or if I have augmentation?  The symptoms hit me in the evening, and even three pills do not relieve the symptoms for several hours.  Some mornings I am awakened with symptoms.  I seem to have more daytime occurrences if I am working on my computer or being somewhat sedentary. 

I am 79 years old and have RLS since childhood. However, I didn’t have it all the time and mostly controlled it with aspirin and acetominophen or moving around. Actually I didn’t know what it was.

In 1999 I had hip revision surgery on my left hip and that opened a can of worms. RLS got much worse. I was given Percocet which, of course, helped. But, as with so many, my physician would not prescribe Percocet after the initial post-surgery prescriptions. About this time it was suggested I had RLS; I was getting only 2 to 3 hours sleep and was in bad shape. I found your web site (and thank you, thank you) and saw that you recommended Mirapex. My primary physician agreed to prescribe that although he knew nothing about it. It worked for a while, but it was making my mouth dry which resulted in a rash of dental caries which I had never had before. I knew that Percocet would work but could get on one to prescribe it. One neurologist wanted me to try Neurontin; I had two of the worst nights, being sleepy, yet not being able to sleep because of RLS.

From August 1999 until last summer, I have seen a succession of neurologists, none of whom really knew anything about RLS and none of whom would read the RLS treatment info that I gave them from your web page although my primary care physician did; he was very reluctant to prescribe opiates, however.  Last summer my primary care physician retired and I got a new one who was more willing to work with me on the RLS.

I have a great deal of pain, in my lower legs (the RLS sensory feelings start with creepy crawlies, etc and progress to pain or I just have pain).  I also have tingling, creepy crawleys, etc. then pain in my upper arms and across my upper back and I feel “shitty”, unable to do much of anything. In addition to RLS pain in my legs, I cannot walk very far without my legs hurting. However most of these symptoms and RLS is pretty much controlled with: 20 mg Oxycontin, one in the AM, one in PM, 2 mg Requip before bed, Percocet 5/325 for breakthrough pain, usually early morning (4 or 5:00 AM and late afternoon 4 or 5 PM.) I also take (for hypertension) 50 mg atenolol 2/day, 10 mg Hytrin before bed, Zoloft 150 to 200 mg for depression, split into AM and PM doses, Xanax 0.5 mg at bedtime (I have been taking this for years, originally for anxiety. If I try to stop, I get nightmares.

I recently went to another neurologist, supposed to know about RLS. I really wanted answers to some questions, but he looked at the list of meds, said he had something better; wanted me to start taking 100 mg Neurontin in the morning plus additional 1 mg Requip in afternoon. I didn’t see the point of adding Neurontin. I think he wanted to wean me off opioids. Didn’t get answers to my questions which are:

   1.    Is the pain I feel associated with RLS, especially arms and shoulders. I do have peripheral neuropathy in my legs and know that could cause some of the leg pain.

    2. I am fatigued a good part of the time. I seem to sleep ok, however. Could RLS and/or pain cause fatigue? I also have depression. I don’t know if fatigue is from RLS, depression or both.

Would it be a good idea to substitute a different anti-depressant? I tried Wellbutrin and had bad side effects. How about Effexor, which I understand, is both a serotonin reuptake inhibitor and a norepinephrine reuptake inhibitor. Both of these neuro-chemicals seem to be involved with pain pathways. Would it help to take an anti-depressant which also acted on pain? Could the walking pain be related to RLS? Or is it more likely from spinal stenosis. Are there any better treatments for my RLS, pain, fatigue? The fatigue bothers me the most.

Thanks for listening, sincerely,
Dorothy

Medical Reply

My girlfriend suffers from what seems to be RLS.  I am trying anything I can to help her. 

Have there been any reports of hot water helping RLS symptoms?  I have thought about saving and buying a hot tub for us in hopes that the hot water might help.

Greg B.,
Seattle, WA

Medical Reply

Thank you for this web site.  I am 37 years old and I can remember having RLS all of my life. Is Parkinson's Disease related to RLS?  My grandfather died of Parkinson's a few years back. 

My mother delivered me when she was 6 1/2 months pregnant.  This was due to her taking an overdose of quinine in which she was trying to abort.  I can't help but believe, it's like I've had withdrawal symptoms from the quinine all of my life.

The only medication that I am on is Dextroamphetamine for ADHD, one a day.   Last night I went to sleep at 4 AM.  Some nights are worse than others.  My doctor prescribed Amitriptyline tablets 25 mg, one at bedtime.  I've tried cutting them into four's but they are still too strong for me to take and still get up the next day. 

Thanks for letting me sound off,
Monti

Medical Reply

My Dr. recently switched me from Paxil, (which I was on for 8 years to treat depression & anxiety), to Wellbutrin. I requested a switch as Paxil had some side affects and I have been reading some negative things about it. I was on 20 mg per day.

I was happy that my withdrawals were not that bad at all, he did not wean me off since it was only 20 mg. I just started the Wellbutrin in its place. The last few nights I cant sleep because of the RLS, and I also feel the need to rub my arms as they feel restless too.

My question is, can this be from Paxil withdrawal? I did not have it before nor did I have it while on Paxil. If it is from withdrawal how long will it last? I take Klonopin at night if I really have to but do not want to start a new med. in addition to the Wellbutrin, which I think I am doing well on except for the RLS and lack of sleep.

Can you please answer these questions and give me your advice on how to deal with this? 

Medical Reply

I have been given several medications  . I am having a difficult time finding a doctor that  will address my RLS problem. Your site has been most helpful and I have been researching RLS treatment. The medications my doctor has me on are Mirapex,.125 3 daily, Zoloft, Restoril and Vicodin for pain . I do not take Vicodin unless pain is bad.

My vision is blurred at times in my right eye and I am wondering if this could be caused by medication. I do feel like I may be on too much medication but I am desperate for a nights sleep.

Any suggestions you have would be appreciated. 

TMW

Medical Reply

I seemed to kick my legs constantly every night.  The odd thing is that I sleep through it but my husband doesn't.  It has now become a problem in that my husband can not sleep with me.  If this is RLS, then why am I not waking up? 

I had a very severe case of Guillian Barre in 1988 requiring a ventilator for assisted breathing and since this illness have kicked in my sleep.  For some reason, over the years it continues to get worse.  Any thoughts?

Thank you,
Kim W.

Medical Reply

I have been suffering with RLS for years...I took Klonopin, Paxil, etc.  I am also recovering from compulsive overeating by the 12 Steps of Alcoholics Anonymous.  Last fall, I decided to quit all drugs cold turkey because I felt very "foggy," with memory loss, etc.  It was heartening to read other letters and your feedback on the "normalcy" of memory loss.

I have been suffering with menopause and very acute depression for the last several months.  A psychiatrist has prescribed 200 mg of Wellbutrin which I have been taking for about 3 weeks...I began with just 100 mg for the first week.

I feel very anxious which I was told could be expected at first...I have some symptoms of RLS...but the most discomfort I am having is groin creepy crawlies...RLS in the groin area...is this probable...is it the meds?  I also take Synthroid and Reminfemin and Vitamin E. 

Thank you, thank you, thank you...for your Website.

Medical Reply

I have what I would describe as a moderate case of RLS. It doesn't happen every night, almost never in the daytime, but when it does occur it can be very bothersome. I tried several non-medication approaches and have found one that works 100% of the time for me.

I am a big guy (6'4" and 240lbs) so this will have to be scaled down to suit smaller people, but, I have my 11 year old daughter walk on my legs. She weighs about 100 lbs. I mention this only because the pressure of the massage therapy would have to be significant to work. I lay on my stomach and have her walk up and down my legs to the knee, and then (and this is crucial to the effectiveness) she stands on my rear end with her heel pressing directly on my sciatic nerve in the hip socket. She moves the pressure up and down a bit until the whole sciatic nerve has received a strong dose of "acupressure".

For other people, a very vigorous massage with some strong pressure would probably work. For the sciatic pressure I'd still guess you would need someone to use their elbow and really press hard. Like I said, it should be close to the point of pain to over-stimulate the nerve, but in the end, it's great.

I've been doing this now for about two years and it has never failed to work. During the process it may cause discomfort for some people, but in the end, your legs feel completely relaxed and I notice that I rarely have a reoccurrence for several days afterward.

Hope this helps,
Robert G.

I have been diagnosed with RLS and have received treatment w/Mirapex but I am now at .5 mg and still have symptoms that sometimes effect the arms. The first time I had this was about 6 years ago while I was pregnant? Could that be the trigger?

I did not have it again until I started taking antidepressants last year  and now I finally am off Wellbutrin -the only one that worked, I am wondering if Paxil could have triggered the condition. Also, I had a left temporal lobectomy 11 years ago for epilepsy, complex partial seizures. I am seizure free but wonder if that might have caused this condition .

The drugs that I took for my seizures in the 80's were Tegretol and Depakote. I still wonder if this stuff isn't all interrelated?

Rosa M.

I am 61 (female) and was diagnosed with RLS about six years ago.  I was also diagnosed as having degenerative disease of the cervical area with mild radiculopathy.  I have symptoms in my arms as well as my legs and occasionally the creepy crawlies on my face.    The neurologist originally gave me Klonopin which gave me a terrible morning hangover.  The Klonopin and several other meds for my neck made my snoring worse.

I had a sleep study and I do not have PLMD.  I did however snore and had some mild hyponeas.  It was suggested I lose weight and use CPAP in the meantime.  I could not tolerate the CPAP on my face, even for a few minutes. 

I surfed the web and found the RLS list group and this site.  At my suggestion the neurologist gave me the Xanax, which worked pretty well with no side effects. I have been taking the same dose, 0.5 at bed time for several years. I also have a script for Ambien which I only take occasionally, two or three times a month.  (I save those for really bad nights.)

I retired, lost 60 pounds, and worked on life style issues.  According to my husband my snoring is rare, usually related to a heavy late meal with wine or a flare up of my nasal allergies.  I have done really well the last four years.  I still had the sensations, including during the day, but as long as I could sleep I have been quite able to ignore them.

Recently I had a worsening of my legs paresthesia, with more frequently leg/foot cramps and I started having occasional palpitations.  In April I had a complete evaluation for the heart palpitations.  The physician (new to me) seemed fairly knowledgeable of RLS, and asked lots of questions about my sleep study and my current sleep patterns.  I had a complete cardiac workup including a stress echo.  I did great on the stress echo and they can find nothing wrong with my heart.

He thinks the palpitations may be related to poor sleep.  The plan was to work on improving my sleep, starting with better treatment of my allergies and nasal stuffiness, and then progress to improving the RLS.  He renewed my Xanax and Ambien, and gave me samples and a prescription for Mirapex, plus samples of several allergy meds. 

Finding something that works for my allergies has been of course difficult.  The best solution seems to me to be more consistent use of Flonase.  (I was only using it when really stuffy).  I've tried Astelin, not sure that hasn't made things worse.  Couldn't tolerate Zyrtec (though he only had a few pills for a sample).  I started using Claritin occasionally when I know I'm going to be outside all day and Flonase, and an occasional Tylenol Sinus (one half dose) for sinus headaches. 

I tried the Quinine for a few days and I didn't notice any difference.

So now I'm faced with the Mirapex.  I read your site on starting, and have started at half of the 1.25 for five days.  So far no side effects but no difference in my legs or ability to sleep.  Tonight I will up the dose to 1.25.

My questions really have to do the best strategy for starting this stuff.  Currently it takes about an hour or so to fall asleep, and I wake up once, maybe twice during the night.  I am able to sleep in the morning until I wake up.  Theoretically I get at least 7 hrs sleep a night.  The paresthesia and twitching start in the evening, especially when I am reading or watching TV, but can happen during the day.

I am taking the Mirapex 45 minutes before I go to bed.  Should I continue to slowly increase the dose at that time?  Or would it be better to start one dose earlier in the evening with another dose at bedtime.  Do you have any problem with continuing the Xanax for bedtime.  (I have taken monthly drug holidays from the Xanax and not needed an increase in the dose.)  I am more concerned about restful sleep than about my waking paresthesia, they really are not that bothersome.  I would really like to keep the Mirapex at as low a dose as possible. 

The palpitations are better since I have gotten serious about good sleep hygiene (no caffeine after breakfast, no TV news in the evening, etc.), but not gone.  My doctor would like for me to consider another sleep study but is supportive of trying medications first.

You have a wonderful site.  Thanks so much for your wonderful service to us many RLS sufferers. 

J. C. in Missouri

Before that I tried Prozac which caused severe movement and sleep problems. talking, hallucinations, tics, muscle spasms, shaking, muscle jerks. I would throw myself off the bed at night. They got better when I stopped the med and switched to Effexor.

I am also an alcoholic and to make it even worse I was a drug addict when I was 20 (Amphetamines). I started using again 2 years ago. I am 50 years old and am afraid of going to a doctor because I do not think they will help me. If I tell about my drinking and using, I will not be able to get any help.

What can I do? No, I will not get help for my addictions. I have done that before, and been clean for 20 years and it doesn't work. Do you think it is possible to find a doctor who would be willing to treat me for RLS? It is a 24 hour problem now and is making my life unbearable.

Would it help if I lowered the dose of Effexor? I take 225 mg now and could try 150 mg. Would that help?

I used to have RLS until I started noticing my body and its symptoms.  At first I noticed that when I would try to relax on the couch after a days work at the office that my legs were constantly twitching.  I could not rest until I changed into something less constrictive. 

Then my legs started bothering me when I was at work, sitting at the computer.  So finally I said that maybe my pantyhose do not allow the blood to flow properly in my legs and all.  For one week now I have not worn my Sheer Energy pantyhose and I have been sleeping so sound. 

I no longer have the urge to move my legs constantly before falling asleep.  I just hope this lasts.  Maybe this will work for others.

Kay N.

I suffer from RLS and sleep very little  most nights.  I crave sweets and can't seem to control this eating  .  Could  it be the medication I take for RLS that is the cause of this craving for sweets?

I take  three of the .125 Mirapex tablets daily for RLS. I am also on hormone replacement and Zoloft. I have been taking Zoloft several years and don't think it is a factor in my insomnia.  It helped at one time for sleep .I think my RLS is getting worse because of age.  I am 63.

Thank you for your web site. It has answered a lot of questions,
TW  San Antonio

I just started some research on RLS, have been suffering for approximately 2 years.  I have had RLS confirmed by a sleep study and  was found to be anemic at the time but blood work shows I'm fine now. 

I have been told there may be a link between the Coumadin I take everyday and my body' s ability to synthesize dopamine, causing the RLS.  Has anyone ever reported this kind of info or any type of treatment?  Any info would be greatly appreciated.

I was diagnosed RLS 9/02, did a month of Mirapex 0.25mg, nauseated constantly. Then I discontinued the Mirapex  and lived with it until July 1.   I had some self induced anxiety  July first went back to my neurologist and started Requip 0.25. mid July.  I hadn't mentioned the anxiety because I didn't at that time realize what it was.

My RLS symptoms are cool lower legs and needle feeling in both legs.  I take Requip 0.25mg at 7 pm and Ambien 10mg. at bedtime and sleep well but have the symptoms from 11am until I retire.  Just went to my internist with the anxiety symptoms and he prescribed Paxil CR 12.5 mg for 9 to 12 months.  I haven't started the Paxil CR because my RLS educational guide said a great percentage of people get worse RLS symptoms when taking the Paxil or Paxil CR. 

My neurologist also said I can take the Requip 0.25mg  at noon to see if it relieves my daytime symptoms.  I have yet to do this.  I did fax my internist to say I wanted to try to distress myself before going on the Paxil hopefully I won't need it . 

Any suggestions??  Since I have started the Requip at  7pm the last 2 nights I have noticed my tongue feels warm and prickly but that may also be due to the anxiety, or could be RLS symptom. Do you think I am on the right course? 

Sincerely, Betty

I have just stopped Methadone after a three week trial, for both the RLS and fibromyalgia. I started with 10 mg twice a day.  With the very first pill both the RLS symptoms and the fibromyalgia pain were totally gone.  And I slept all night for the first time in many, many years.

But after the second dose I experienced vertigo and severe nausea.  Both got worse as time went on, and I started having wrenching abdominal cramps as well, plus indescribable headaches.  I tried adjusting the dosage down as far as I could, yet still controlling the symptoms, but that didn't work either.

Now I am entirely off the Methadone, and my health provider wants me to try Effexor, so I will.  What results have you seen with it?  And do you often see such bad side effects as those I experienced with the Methadone?????

Maryam in AZ

I am 33 years old and have had "the aches and fidgets" and insomnia for as long as I can remember.  My doctor finally convinced me to go to a Sleep Lab last winter. In December 2002 I was diagnosed with mild Sleep Apnea, as well as RLS and severe PLMD.

I've seen an Ear, Nose, and Throat doctor about the apnea, and he's not too worried about it, my numbers are barely outside the normal range. I'm not using a CPAP right now. My feeling is that I can't separate out symptoms of Apnea from the symptoms of the legs until I'm getting a full nights sleep. So the apnea isn't a big deal at the moment.

The RLS and PLMD are a different story. I'm on Mirapex and am currently taking .5mg at 9am, .5mg at 4pm and .75mg at bedtime. For the most part, this controls the RLS during the day pretty well. Some days are better than others. I'm still having a hard time remembering to take all these pills. I have a job that is quite active (forester, in the woods all day) so when I'm hiking around I don't really notice any symptoms.

When I get back to the office or if I'm in the office though, I know right away when I've forgotten a dose or it's past the time I try to take it, the legs start fidgeting. Are there any long acting drugs that are effective? I am still not sleeping through the night though. Some nights are better than others, and the Mirapex is helping. I think I've gone from about 2 hours of sleep a night to maybe 4.

I generally go to bed about 9 every night and fall asleep OK, but always wake up by 1 or 2 am and generally don't fall back asleep before I have to get up at 5am.  I have read other letters where people who wake up during the night will take another dose. Is this as good as it gets? Should I be expecting to sleep through the whole night, or is this unrealistic?

Everything I read makes it sound like both RLS and PLMD are very treatable. I also read that most people get relief from Mirapex at much lower doses. I still feel relatively new to this and am still learning foods and things that make it worse. I just found an RLS specialist in the area with the help of the RLS foundation website. I'm going to make an appointment to see him.

Anyway, I'm wondering if this is fairly typical or what? Thanks for this great website and Thanks in advance for your advice.

Brian

The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.

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