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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 a farmer and spend most of my day on my feet. When I do get
the opportunity to relax, my legs make it impossible. Could I have
augmentation? Do I need to try something else? My GP has referred me to a
neurologist, but I can't get an appointment for four months, and I think I
will go crazy by then.
Xanax, narcotics don't do the trick. I have chronic kidney syndrome and have tried to stay away from medication, but that is impossible. I have had RLS since age 10-12 and now I am 65. Mirapex has helped a lot but I am on Zoloft and I find the mix causes a bad case of short term memory. Lowering the dosage of Zoloft to 50 mg doesn't help either. Has any one every had that problem?
I live in Arizona and the summer heat makes the RLS much, much worse. I try to take some type of analgesic, Tylenol with codeine, Ativan, etc but then I have a horrible headache all the next day. Has anyone learned how to handle the heat??
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,
I have tried quinine but it had no effect. Same with Temazepam. I have also tried Klonopin at 1mg before bed but it "spaced me out" the next day to the point where it was worse than the effect of the PLMS. I am not sure what to try now. My doctor admits that my symptoms are more severe than any he has encountered (my arms flail at times too) and is at a loss what to recommend. He is open to suggestions arising from my own research. Hence my letter to you.
Any suggestions how to proceed would be gratefully received. Thank you in hopeful anticipation.
A Reply from Barbara
I did try the Astelin for the past two days and yesterday I had some RLS breakthrough to the point that I had to take extra medication during the night last night, so I guess it is not going to work.
Make sure that when you spray the steroid nasal sprays that you spray away from the septum. That is the most common reason for side effects from these sprays as they are otherwise very safe and effective.
Recently my feet and ankles have started to swell with aching, burning and general leg discomfort. This starts first thing in the morning and lasts all day. My usual symptoms are white hot needle like pain with involuntary movement throughout the day which worsens in the late afternoon and evening continuing into the night. I do have upper body movement and pain as well. Is the swelling related to RLS or is this some new demon?
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.
For the first time in years, I can watch TV without my legs flying around all over the place. I sleep better at night after using it in the evenings, too. It cost $250. If you have a couple of thousand dollars lying around, you can get a massage chair with a built on Ottoman. BTW, I have NO monetary, investment or business connections with Brookstone or the product.
I just know what it is to suffer RLS, and now I seem to have found, if not a cure, at least a treatment and blessed relief! Hope you all can give it a try!!!
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,
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?
I have a mild case of RLS. Recently, it has gotten worse. I just started taking Zyrtec and Nasacort for my allergies. Is there any connection? (I have also been taking a very low dose of Prozac for a few months but have not noticed any changes since starting that.)
I feel like there is something seriously wrong with me. I can not sit still at work. I am going to stop taking all allergy meds for the time being. Please let me know what you think.Heather G.
And then, will the Xanax (or whatever) then be in lieu of the Mirapex or in addition to it? I know that that is my internist's job to know such things, but I like to be forewarned.
I've been dealing with this condition for about 15 years. It may have contributed to my marriage break down. Always feeling tired and no energy to do things.
About three or four years ago I tried marijuana. It worked beautifully. I wait till the twitching starts and just take one puff. That is enough for about an hour. Then when the condition reasserts itself, I have another puff and I am often now gone for the night. It works for me and is far cheaper than prescription drugs.
I wake up with no effects from the marijuana that I'm aware of. The smoking aspect is the down side. I've tried mixing the marijuana with chocolate, works fine but uses lots of the marijuana.
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.
I am 49 years old and have had RLS for about 10 yrs. I have been taking Requip for the last 4 months ( .25mg twice a day) and it has helped me sleep and I have do not have the daytime symptoms that I had with Sinemet, I will also take one half a pill of Vicodin on those nights that the Requip is not working, which varies week to week, from none to three times a week.
I have noticed that I feel tired and fatigued during the day and wonder if the Requip could be causing the problem.
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
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.
I have every symptom, the squirmish, jittery, tossing and turning sometimes burning sensations from my trunk down. only now can I say RLS! I am 31, an active healthy male physically and mentally. I have tried Ambien 10 mg for sleep, it put me to sleep, but for about 2 hours, but it never stopped the RLS.
Only since reading articles of this syndrome I have found what works absolute all night for me. A few weeks back I had some wisdom teeth removed and my dentist prescribed me a med called Lortab 10/500. I had some left, and after reading articles on RLS, decided to try them for it. the result was amazing.
No RLS on those days! I know they are for pain, but they worked every time before bed. now the hard part. How do I tell my doctor, or neurologist this without them looking at me funny?
Thank you so much for helping us online. I have been diagnosed with Chronic Fatigue Syndrome. (If you are familiar with this condition, you'll know that this is a very unfortunate choice of names for it.) I have had RLS for about 10 years, but it was always mild until I developed CFS (after a serious viral infection two years ago). With this new condition, the RLS got much worse but after my doctor checked my ferritin levels and found them below 50, he approved my taking iron and, along with leg wrapping, that has been giving me enough relief.
However, the past two weeks, the RLS has suddenly increased in intensity. Just as an example, last night, after initially falling asleep, I was up for two hours with RLS in one leg and then after falling asleep for two hours, was up for three hours with RLS in the other leg. As you can imagine, this is devastating for someone suffering from CFS. I can barely function today. I regularly take a small amount of Xanax (.37 mg) each night in conjunction with the CFS because it helps diminish the body pulsating which keeps me from getting to sleep. I don't want to increase that dose because I don't want to get used to a higher dose that would then require drug holidays. In the past, my doctor has not wanted to prescribe any of the Parkinson's medications for the RLS because he's concerned they will exacerbate the CFS symptoms.
So, I feel at a loss as to what steps to take next. My doctor is very receptive to my feedback and I'm seeing him next week. Can you tell me what you advise for someone with both RLS and CFS? Again, I appreciate this service so much.
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,
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?
My reading was only 3 which was very low. Is it possible that this may be causing my PLMS and is iron supplementation likely to lead to an improvement?
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
His physicians have advised Tylenol PM, Quinine, and Clonidine. He is currently dealing also with hyperparathyroidism. I have not seen in research, any advice for someone with CRF. Naturally, we would like to find a remedy that would not conflict with his current medications.
We would appreciate any suggestions?
Maxine in NY
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.
For years, I took Mirapex .5 mg at night to help me sleep and 4 of the 50 mg Ultram tablets to help me during the day. I can't take Mirapex during the day- it puts me to sleep. Now my doctor said that I was on to high a dose of Ultram and she took me off Ultram and added 900 mg of Neurontin in addition to the Mirapex.
I was nearly crawling out of my skin during the day. My doctor now has me on Sinemet CR 50/200. I still get crawly feelings during the day but I am allowed 2 Ultram. After 1 experience with Sinemet rebound , I am a nervous wreck worrying about being on Sinemet again but the doctor said I wouldn't get rebound with the Sinemet CR.
1. Do you think this is true?
I guess most people hope to have a long life, but with the struggle I've had with this , the shorter my life, the better.
I had mild RLS before, but it got much worse this year and it was driving me crazy. I lost a lot of sleep. I had it a couple of months and tried various things that didn't work very well before I finally went to the doctor, and he told me to try increasing my vitamin intake, especially magnesium and calcium, and also selenium.
Below are the vitamin brands that were recommended to me by the vitamin sales clerk, who, coincidentally, had a boyfriend with the same problem and she said they worked for him. Since taking these three vitamin brands every day, the RLS has subsided. I really think these vitamins are what did it.
I recommend at least trying vitamins before taking medication even though I have noticed some people are skeptical about vitamins. What helped me was increasing my intake of these vitamins, the lower dosages weren't enough.
I am extremely grateful to have found something that works, and I hope it helps others. I usually take these at night, and I have noticed if there is any indication that the RLS is going to start up at night, it usually goes away after I take the vitamins, or at least it becomes mild enough so that I can sleep. Also, they are expensive, but worth it!
Here is what I take:
I saw my neurologist this week and we discussed the possibility of in the future using methadone. I have severe RLS night and most of the day in my legs, arms, shoulders. I haven't had much luck with Mirapex, Neurontin, Sinemet. I take Ultram alternating with Vicodin and at night Mirapex knocks me out enough so I get maybe 4 hours of sleep. My doctor doesn't know to much about methadone.
1. I am 50 years old ,is that too young to think about using methadone considering I would probably need it for so many years.
I appreciate any info I could take back to my doctor.
I also take .75 mg Mirapex. I have been on Mirapex nearly 6-years. I want to stop this medication but can't seem to do that. I have RLS twice as bad when I try cutting down.
Could Methadone be my only drug for RLS in the event I can wean off Mirapex? Will I need a drug holiday from Methadone and how do I go about this and with what drug? I tried Ultram and did not like side effects as well as hydrocodone or Neurontin.
I feel Methadone is my last resort, but I am afraid of it and do not know exactly how to handle it. Why are doctors so reluctant to prescribe this med for RLS? I need help in understanding this drug.
Thank you for your input,
Bon in Arizona
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.
Is it unrealistic to expect to take pain meds for the rest of my life?
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?
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
When I am stressed, the body sensations are there though usually it feels more like waves as opposed to the worms. I did participate in a sleep study and have PLMD with a mild arousal rate. My waking after 4 hours was also noted during the study. I also did not have any REM sleep but I was told that that is not unusual during a sleep study.
I fortunate to have a GP who is willing to work with me. With ferritin levels at 5, I tried iron supplementation but could not tolerate. She has since started offering Metagenics products, and I am now trying these supplements, with good tolerance of their “Hemagenics Iron and B Vitamins” supplement. I’m hoping this will help.
In the meantime, the doctor preferred to start with benzodiazepines rather than anti-Parkinson’s meds, and until recently I had had pretty good results with Xanax, beginning with .25 mg before bed (for about six months) then increasing to .5 mg before bed.
When RLS “broke through” in the middle of the night, I got up, took 10 mg. Sonata, stood around doing crosswords for 20 minutes (quick onset) and went back to sleep. Sonata is useful only if four hours of sleep time remain before arising – consequently I have had many too many days when I feel depressed and unable to function well (unacceptable in an educator).
Since reading your guidelines, I thought perhaps I had to increase Xanax because of neglecting to take drug holidays every two weeks. I started doing this, first with Ambien which I found pretty useless for RLS.
Then I tried Mirapex .125. Not a twitch in sight – nor a bit of sleep. I have now tried Mirapex once last night and once a fortnight ago, with terrible insomnia both times. (I had the same problem with Ultram which I had tried even before Xanax, but did discover that .5 mg Ultram is perfect to insure a calm night at the theater or a long drive.)
1. Will this insomnia possibly go away if I continue with Mirapex?
2. Should I try to stay with Xanax as long as possible or try something else;
3. If something else, what?
Thank you for the clarity you are able to bring to a sleepless world!
LS, in California
After finding the "right" doctor, I started taking Mirapex 0.5 mg and within a week or less I had no symptoms. The doctor was even amazed at the difference in my legs. I was able to sit still and not fidget around, for the first in years. I am still in shock at the fact that I can sleep through the night and not get woke up with leg pain. If there is anyone out there with indescribable leg pain, don't give up, keep looking and do not let anyone tell you that it is all in your head. Hope that you can find relief like I did.
Good luck, Kimber
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
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