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Thank you for the informative and encouraging website. A transatlantic flight 5 months ago plus a lot of sitting at work this fall made a deep ache in my legs that gets better if I move around. Also, while sitting during the evenings the past few months I had an almost uncontrollable urge to wiggle my legs.
Most recently, my symptoms have been a feeling of sunburned legs, day and night, and a deep ache and feeling of pressure/tickling in the legs if I sit or (or sometimes stand) more than a short time. I don't have the urge to wiggle anymore, but I simply have to get up and walk or the discomfort gets overwhelming. I fall asleep ok and seem to have no leg jerking at night, but I do wake up every few hours for 5 minutes and go back to sleep.
A few weeks ago my doctor prescribed 1/2 pill at night Carbidopa/Levodopa 25/100, but I'm afraid to take a CNS drug, so I am first trying some of the home remedies you listed. Nothing has worked well yet, except stretching/rubbing my legs and trying not to get anxious.
Does this seem like RLS and, if so, am I right to avoid drugs if I can get by without them? If I am being too cautious about meds, what drug should I take, given the level of my symptoms? I have a long flight coming up and I don't think I can sit for long on the plane. Are there medications I can bring, "just in case", that alleviate my symptoms on the spot? Is there a cushion that will place my weight on my "sit bones", rather than on the back of my thighs, where pressure seem to trigger the problem?
Thank you for any information or advice you can provide,
Neurontin doesn't seem to work. When I combine it with a low dose of Mirapex, it helps greatly for a few days, then seems to stop working. It doesn't do anything on its own. Clonazepam lets me get through the early evening, but doesn't do enough on its own to let me sleep. I think I may be allergic to opioids. I tried hydrocodone a few years ago in the hospital and vomited.
More recently I tried some Percocet and it helped quite a bit (only had enough for 2 nights), I told my GP and she wrote a script for hydrocodone - I vomited both nights I took it. I made sure I took it with food, too.
I was wondering if you could tell me what everyone is talking about when they say soap can be used to help with rls symptoms? I think it's something about putting it in the bed???? I have RLS and would love to know about anything that helps no matter how silly it sounds.
I have diagnosed, via sleep study, PLMD. I also have Sjorgen's Syndrome (dry eyes syndrome).
Currently I am taking Requip 4 tabs of .5 mg at 8:00 pm. I started out with 3 tabs, but it wasn't enough. I wake up my husband with my jerky legs and often wake up on my own and go to into another room to sleep, but I know that the Requip helps because I don't need a nap everyday. I don't feel refreshed in the morning, but can function. Some days are more of a struggle than others. Recently my hands feel stiff, swollen, sort of like paws that also hurt. I read somewhere that this type of drug can cause gout. Is it possible that my hands are reacting to the Requip. I couldn't take Mirapex because I had just about every side effect possible.
Also have mild sleep apnea and am fighting with the insurance company for a dental device. The CPAP mask aggravated my dry eyes. Too much air circulation around my eyes.
After 10 years of not sleeping, I found someone who is willing to try to help me. My current doctor is very open to ideas.
I took your suggestion from several months back and went to a neurologist for my RLS. Klonopin worked for me for about five years; Elavil and Neurontin did not work. I've been taking a 1 mg. Xanax at bedtime for about a year and a half. Of course, it no longer works. The neurologist I saw yesterday immediately put me on Mirapex.
He said that since he started prescribing this drug for RLS patients, his job has become very boring because it works so well with everyone. He gave me samples of .125 mg., but my prescription will be .25 and the directions are take one - two, one - two hours before bedtime. He told me I could take three or four of the .125 mg. until it runs out.
I took two last night and no Xanax. It did help with my leg pain, but I had a very difficult time going to sleep. I was disappointed because I had discovered something to help me with the pain that was keeping me awake and now I have insomnia. Is this common in the beginning? Will Mirapex eliminate the need for additional sleep aids? And what is considered bedtime?
Is it when you lie down to try to fall asleep, or is it just when you lie down? I will watch TV. in bed and read also. Should I take the Mirapex 1 to 2 hours before I plan to lie down? Do I need to continue with the Xanax for a while, maybe at a lower dosage?
A Response from Sallie R.
I have two distinct parts of my RLS. The first part is the URGE or NEED to move my legs, the Second part is the tremendous pain I feel in my thigh bones. Iíve lifted heavy weights my whole life (power lifter/ bodybuilder) and this pain is right up there with deep muscle pain from 700 pound squats! Iíve had RLS since I was about 8 years old. I am 40 now. It ebbs and flows through life. So far I have treated it by doing about 100 deep squats during the night when it flares up. I usually wake up between 2-4 times a night and sometimes I am just too tired to do the squats or to rebellious (I hate that a disease can control how I sleep).
My doctor prescribed Mirapex and since I am a high strung type of person to begin with, I told him I was concerned that any dopamine increasing or copying type of drug would probably hype me out ( I donít drink caffeine because Iíll bounce off the roof if I do) so he also prescribed Oxazepam (a benzodiazepine) to help me sleep during the adjustment period while I was getting used to the Mirapex.
My family doctor (bless his heart) was prescribing me Tylenol #3 with codeine . It worked for a month (1 pill a night before bed), then I needed 1 pill before bed and 1 pill 4 hours later. Then I started waking up the next day REALLY irritable and angry for no reason.
First Night: .125mg Mirapex (half a .25mg pill). Ė My RLS was COMPLETELY relieved and it was the worst it has been in a long time. However, I didnít sleep a wink. I wanted to try without the Oxazepam first because I donít like taking pills.
Second Night: .125mg Mirapex Ė 15mg OxazepamÖ Slept like a baby, no symptoms whatsoever. Woke up a little groggy. I normally wake up crisp and ready to go. This day I woke up and felt like a teenager trying to wake up. It took me about 45 minutes and a shower to get going and my legs still felt sort of weak.
Third Night: .125 Mirapex Ė 15mg Oxazepam Ė woke up feeling really hot, but no leg pain or RLS symptoms and went right back to sleep after removing the covers.
The next day, I feel a little dizzy, barely perceptible but enough to make me anxious. Ok, Iím a control freak, I hate when my body is doing weird things. I just want to feel NORMAL.
Fourth Night: I just took .125 Mirapex and am going to see if I can go without the Oxazepam and see what happens. Iíll keep yíall posted.
Could the Sinemet have caused permanent damage to my legs? How do I get off the Mirapex completely? I want to be back to where I was before taking Sinemet and, without the 3 drugs I was taking, I believe I could live a normal life.
Thanks so much for your web site and your wisdom.
My mom is 81 and has been a sufferer of RLS and now PLMS for years. She is in desperate need of knee replacement and her doctors are in fact urging her to go ahead, but we are very concerned how she could cope with the rehabilitation and need for no movement in the early stages after surgery with the extreme degree of RLS she has.
I have been using Mirapex for a couple of months now, and it has resulted in some degree of insomnia. I don't have trouble falling asleep, but I invariably wake up 2-3 hrs too early and can't get back to sleep. Is it the Mirapex or the cessation of Mirapex that produces the insomnia? (I'm currently on 1.5 g 3x daily, with the last dose taken about 5 hrs before bedtime).
Would an extra dose close to bedtime reduce the insomnia or worsen it? I have to try something to conquer this problem.
I suffer from RLS, and the discomfort I experience also occurs in my upper arms. Is this a common situation, and should Mirapex help the arms as well as the legs?
The shorter version: I was told the problem came from a failed back surgery. In Feb. 2003, I moved on to the big job. A full blown lumbar fusion surgery by one of the best back surgeons in the country. I ended up with a 3 level fusion that caused spinal fluid leaking etc. It only added to my misery.
Via the internet, I realize now that I had RLS all along since the first back surgery. I have read and studied and tried many drug combinations only to have them help for a little while. Best so far are Klonopin and amitriptyline. Just recently with the great help of my primary care doctor in Maryland, I tried Mirapex and after getting the dosage right bingo. The first control of the crawling pain in my legs in over 15 months. Down side is the insomnia. Still no real sleep just far less pain. after being up for 10 days with only less than 2 hours sleep per night, I tired some Xanax 1mg with the Mirapex. I slept for 6hrs for the first time in many many months.
Is it recommended to take1mg Xanax with .25 Mirapex at bedtime? I tired Ambien but it only gets me 1-2 hrs sleep with the Mirapex.
A Response from Bill P.
My problem now is the Mirapex is helping the RLS better than any medications in 7 years but I continue being unable to sleep. I have added 1 mg Xanax at bedtime and am feeling better than I have in a long time. The Mirapex is great but it seems I need a sleep agent and Ambien does not do it.
Do you think this is an ok regimen of meds as long as I take a drug holiday from Xanax every 12-14 days? I have been trying some Neurontin for those 2 days off Xanax in hopes of getting some sleepy effect as I had previously with Neurontin. I already take some Ultram for back pain.
Would it be possible that upping the Mirapex at night that it would also help my sleep. It sure would be nice if the right combo of Mirapex would also eliminate the insomnia factor.
Bill P. in Md.
I have another concern and am wondering if anyone else has a symptom such as mine. My ankles have become increasingly stiff over the last year and I have difficulty walking. I refer to it as "slap footing" when I walk because of the slapping noise I make. It makes it extremely difficult to walk for any period of time and a slight incline can be a nightmare. I am wondering if this is related to my RLS?
I'm a 39-year-old female who has suffered from RLS and PLMD since I was a teenager. I actually became aware of it during a bout of scarlet fever when I was 18 years old. The PLMD was so severe I was practically thrashing about the bed most of the night. While I go for stretches of time (sometimes weeks) without an episode of RLS or PLMD, when it does occur it can last for many nights and usually means many hours of agony and maybe a couple hours of sleep. My RLS generally affects my thighs and calves and I've tried most of the non-medication remedies mentioned on this website. I generally don't have any symptoms during the day except maybe when on a long flight, or maybe I just don't notice them because I'm moving about.
I am genetically predisposed to being very skinny and my doctor assured me there is nothing wrong with me; it's just genetics. Because I'm constantly underweight (based on the weight/height chart) two years ago I started taking Peritol to enhance my appetite in a bid to gain weight. While on the Peritol I noticed that my RLS and PLMD severely worsened, so much so that I had to stop taking it if I ever hoped to get a good night's sleep. This didn't make me happy since the Peritol was the only drug that I found that actually increased my appetite (I've tried everything there is).
I'm not sure what class of drug Peritol is but I'm wondering if it's in the antihistamine class since so many people complain that antihistamines worsen their RLS and PLMD. I don't take any meds for my RLS and PLMD (actually I was embarrassed to even mention it to my doctor for fear he would think I was nuts). I do take Imovane occasionally to sleep if I've had a few bad nights of RLS and PLMD. It works in 20 minutes and I don't feel groggy and yucky the next day. It does leave a slight metallic taste in your mouth but it's worth it just to be able to get a good night's sleep.
Finding this website was a Godsend. It's comforting to know I'm not alone in my affliction,
I'm beginning to suspect I have RLS, but have not been diagnosed. Intermittently (about 4 times a year), I'll have a stretch of a few days to a week where when I go to bed, I am repeatedly woken up by jerking legs, arms, or even my stomach muscles.
Thank you very much for your helpful advice about my severe PLMD problems. I have asked my doctor for Mirapex as you suggested. He has no experience of it but complied with my request to start with .125 mg dosage once nightly on the basis of the information you have given me. I have three additional questions:
1. It has been suggested by my younger sister, who has young onset Parkinson's Disease, that I should be taking Motilium for a few days prior to starting Mirapex to reduce side effects such as nausea. Is this so or can I just take it by itself? Should it be taken with food?
2. What ongoing monitoring is required and how often -eg blood tests, organ function tests, blood pressure etc if I am taking Mirapex regularly? I am waiting to see a neurologist but will have to wait 6 months or more unless I go privately and not on our free national health service.
3. Should I start the drug at a weekend when I am off work in case of side effects?
Thanks in anticipation once again. Your advice is invaluable as my doctor has no experience of a PLMD problem as severe as mine.
I just came across your site and it makes me realize that I am not in this alone. I have had RLS for 20 years, I never had it diagnosed until I was in my 30ís. My family carries the Huntington gene so I always thought I was in the beginning stages of this and never wanted to be diagnosed. I have since been tested and I am not carrying the gene.
The most sleep I get is 2 hours at a time and I have very bad episodes when I do not sleep at all. My neurologist had me on Topamax which made me into a walking zombie and still didnít work; I am on Sinemet now without relief. I spend most of my days just crying I guess in part due to exhaustion. I find many doctors do not take this serious.
I was recently admitted to hospital because my body just gave out it I just needed sleep but all the doctors want to do was send me to the mental ward and put me on antidepressants and when I informed them it would only make it worst they really decided that I had a mental problem. I had even heard them discussing whether I was coming off some illegal drug because I describe the feeling as something crawling under my skin.
It was not until my own doctor showed up and assured them that I was perfectly sane. I do realize that to a lay man RLS may sound a little out there but it does worry me about the lack of knowledge some doctor have about RLS.
Hats off to you for your dedication to RLS and giving us hope.
Most all RLS patients can get very significant relief with the proper medications (and usually avoid bothersome side effects if taken correctly). You should not rest until you find a doctor (or get a referral) who has the expertise to treat your RLS effectively.
I find that methadone works very well for RLS patients. It is often the most potent narcotic for RLS lasting longer than the others. There is great variation to how well any of the narcotics are tolerated and only trial and error will tell you which one works best for you. At equally potent doses, all narcotics have the same potential for addiction/dependency.
Often increasing the Mirapex dose will help with the augmentation but it is just as likely that it may accelerate the problem.
I took Mirapex (0.125 mg midday and 0.250 mg at night ) from 1998 until April 2004. It was no longer working effectively so in April 2004 I was switched to Neurontin (400 mg at bedtime) and Mirapex (0.125 mg midday). It controlled the RLS wonderfully well, but by December I was overwhelmingly depressed. A few days after being taken off Neurontin the depression disappeared.
I was also diagnosed with moderate sleep apnea in May 2004. Tried both a CPAP and an oral sleep appliance to no avail. I think I must have nasal blockage causing problems. My PC doc said the nasal passages were too swollen to see if I might have a deviated septum. Flonase has not helped.
In December 2004 my Primary Care doctor put me on a low dose of Gabitril increasing it gradually to 8 mg at night before bedtime which is what I now take. I still take 0.125 mg of Mirapex during the day to control evening symptoms which it does pretty well.
Problem is that I am up and down every night now, getting maybe an average of 3 hours sleep. Many days I feel like a zombie, although some days are OK despite the lack of sleep. It seems not many are on Gabitril so I can't get a line on it. Any suggestions? I think my doctor will want me to keep increasing the Gabitril.
Gabitril is a very reasonable anti-seizure drug to use
for RLS but it is similar to Neurontin in that sedation is a significant
side effect. Your problem is even worse as you have untreated moderate
sleep apnea which should make you feel like a semi-zombie all by itself.
Gabitril is a very reasonable anti-seizure drug to use for RLS but it is similar to Neurontin in that sedation is a significant side effect. Your problem is even worse as you have untreated moderate sleep apnea which should make you feel like a semi-zombie all by itself.
Normally, I would suggest taking Ambien to get more sleep but the real problem is to get your sleep apnea problem fixed first. You may need to use a nasal steroid spray (like Nasonex, Flonase, Nasacort, etc.) or see and ENT specialist for more advanced treatment so that you can use CPAP.
Another choice for you RLS would be pain killers, but the narcotic ones may cause the sleep apnea to worsen (tramadol probably does not).
My doctor has now started me on Requip but it hasn't had much effect on the RLS and I seem to have developed insomnia, and when I do fall asleep I have horrific nightmares, they are so bad I am almost glad I have insomnia, is this a side effect of Requip? Also does Mirapex have the same side effects and should I try it?
Although Mirapex may have the same side effects as Requip (they can both cause insomnia, but you can only tell after trying the drug). It is quite likely that Requip is causing your insomnia.
If Mirapex does not work better for you, other choices would be Neurontin or pain killers.
I've been recently diagnosed with RLS after suffering for the past 20 to 25 years with pain in my legs. Growing up everyone thought it was growing pains and to some extent that may have been the case. Now at 36 I don't think that is true. After going to various doctors over the past 3 years, my current doctor decided that he'd help find out what is going on.
He tried me on Feldene and Bextra, which both never really helped. Feldene actually did give me some relief but, made me very sick. I've had an MRI, X rays, and EMG tests. All were pretty much normal. The EMG doctor and I have both came to the same conclusion of RLS after talking about symptoms and discussion. He has been treating me with various things.
First off with Clonazepam 1mg before bed and 0.5mg Ultram for pain during the day if needed. The Clonazepam worked wonders for night sleep but, makes me feel tired for a 4-6 hours the next day. Not bad enough for me not to want to use it but, I wanted to try something else. He then gave me samples of Sonata. The Sonata kept me awake, similar to a large dose of caffeine.
Next he put me on Neurontin 100 to 300 mg before bed (2 weeks ago). At first the Neurontin seemed to help with pain but, it keeps me from falling asleep regardless of what dose. I noticed that people are taking up to 600mg and up before bed so, I tried various doses up to that. I was awake most of these nights.
I resorted to taking a Clonazepam to finally fall asleep. The Neurontin does help with pain but, keeps me awake also. I tried the Ultram at night but it also keeps me awake but, makes me very tired after it wares off. Any suggestions of what to do? My wife has helped me control the leg movement by making me aware that I'm doing it. Seventeen years of this has made me stop. However, since I do not move my legs any more my legs hurt worse.
My pain starts anywhere from noon to dinner time and lasts most of the night.
I've recently begun taking Lamictal. I've been on it for about 3 weeks and have worked up to 50mg by now, with eventual dosage of 200mg. Previous to beginning Lamictal, I had been taking Tramadol on most days (for the last 4 mos. or so) and that seemed to keep the RLS pretty much at bay. I stopped the Tramadol when I introduced Lamictal because I didn't like the idea of taking these 2 together and had read on a couple of sites that it's not good to take Tramadol with Lamictal, although my doctor. He says they don't conflict.
In the time I've been on the Lamictal my RLS symptoms have increased significantly in both frequency and severity (maybe because I stopped the Tramadol at the same time?) and have had to begin the Mirapex again. Actually, I get the best results with 50mg of Tramadol with .25 mg of Mirapex daily. I'm so tired to trying to juggle all these meds and deal with all the side effects.
My questions are:
1. How does Lamictal typically affect RLS?
2. Is it okay to take Tramadol along with the Lamictal?
3. Is it okay to take Mirapex with the Lamictal?
4. Is it okay to take both Mirapex and Tramadol with the Lamictal?
A note on Tramadol, I don't like the way it seems to affect my mood. While it gives a rather euphoric feeling when I first take it (which is nice), as it begins to wear off, my mood begins to drop. It feels like I'm on an emotional rollercoaster sometimes. My mood is much more constant since I've been off it, but it works so well for the RLS that I'm tempted to start it again. Any comments on this issue?
A lot of questions - thanks for your input!
A Response from Kelly
Sent: Tuesday, March 01, 2005 6:25 AM
It only happens during the course of falling asleep or being asleep for a few moments, and doesn't always happen. I know this is related to the Tramadol because when I stop taking it for an extended period of time, it stops, but starts again when I begin taking the Tramadol again. I would also have very slight involuntary body jerks occasionally while on it (not noticeable to anyone but me). They aren't painful or troublesome like RLS symptoms - I've just taken notice of them when I'm taking Tramadol.
I have seen no reports even remotely similar to what you are describing with your tongue biting problem with tramadol. It is thus very difficult for me to comment on this although if it comes and goes with starting and stopping the drug then you are likely right about the correlation.
Will the Vicodin over time start to effect my liver? Should I just be on Ultram? Also could you suggest how to take a drug holiday from these medications? In one year I have gone from 1 pill to 3 pills each night and I am kind of worried. I have noticed the pills do not seem to be as effective as they used to be. I do want to say these meds did give me back my life, sanity, and sleep.
I wanted your input so I could run all this by my doctor on my next visit. Thank you in advance for your reply and this wonderful site.
Generally, alternating the narcotic (Vicodin) and Ultram should work very well. It may be a little better (only trial and error can tell you this) to alternate every 3-4 days rather than weekly. That way you take one type of pill only half the week which gives you a drug holiday of half a week for each drug. Methadone may be a better choice for the narcotic.
I used Neurontin for a year or so. It helped at first. After about a year I had been planning to talk to my doctor about easing off of it, since it no longer worked. Also, I had been noticing I was more forgetful, but only enough that I wasn't sure if it was from the Neurontin or from getting older. Then I began getting headaches. Then after a few weeks, tremors and forgetfulness. Nobody thought it was the Neurontin. They did CT scans, blood tests, and many other things to rule out other problems.
I saw five or six doctors. I was afraid to stop taking Neurontin abruptly because the instructions warn against it, and also I figured I would be addicted and didn't want to make whatever was wrong with me worse by getting no sleep at all. One doctor told me "Neurontin is safe" (his exact words). My symptoms were not listed on the Neurontin literature. I thought I had some kind of wasting disease that nobody could diagnose, and I was very afraid I would die from it in time.
It turned out that it was the Neurontin that caused my problems. When I stopped taking it, the headaches were gone the next day, and the shaking was much better. Over the next couple of months I was almost completely recovered. The reason I'm writing this is to emphasize that you'll never know how you will respond to medication (herbs included), and if you have to balance the benefit you get from the medication with the danger.
I don't know what long-term damage I did to myself, and I won't be trying any drugs soon, even though I rarely truly relax, I sometimes only get a couple hours of sleep, and my husband feels like I am pushing him away because I have such a hard time laying still in bed. Weigh all the ramifications before you take a chance on going through the same nightmare I did. And don't let anyone talk you into taking medication (even herbal) if you're not sure it's right for you.
I find that it helps if I take a hot shower in the evening, and my bedroom needs to be cool at night. A cold shower in the summer when it's hot is also helpful, but difficult to do. I have to find the right balance of exercise, not too much or too little. I do leg lifts while lying on my side when I'm in bed and can't keep still.
When I was young I could relax by contracting and relaxing each set of body muscles, but now I have to take my thoughts completely away from my body or it gets worse. Because it's worse during the day if I'm bored I know there's a psychological component, but hypnotherapy didn't help at all. I'm not a very suggestible person, though, so it might work very well for somebody else, especially if you find the right hypnotherapist.
Medical A Response from Susan K.
But I'm not the only one that has had a problem with Neurontin, which has been nicknamed "Morotin" by some. It's important for a patient to realize that new symptoms can occur even when he's been taking a drug for a while and that his understanding of his response to medication can override a doctor's perception that the medication is safe.
My doctor now has prescribed Ambien but it has offered very short term relief (4 hours max). I have found your website to be very useful and wish I would have known before I took Sinemet.
And many, many thanks for this helpful site. I am a 54-year old female who's had RLS since I was a teenager. In my more polite moments, I call it 'The Grunions'.
How does being in the proximity of electrically-generated heat aggravate RLS? In my case, I absolutely know there is a direct connection. For example, if I spend the day in a room with a portable electric heater, even at a distance or 10 or more feet, the night will bring severe RLS in arms and legs. A heating pad, electric mattress pad or blanket will do the same.
Of course, I avoid these things but am mystified as to how such things can exacerbate RLS and even bring on a nasty attack during an otherwise quiet phase. A hot shower or bath won't do it, but proximity to electrically-generated heat will. It's as though the electric current escapes its insulation and jumps right into my bodily wiring. Is this common and how does it happen?
Listed under your 'Non-Conventional Treatment' page, Section 5, ('click here....herbal therapy'), I ran across a link to Applied Herbal Solutions. Their product called NeuroEase is a topically-applied cream that gives me considerable relief. Here's the link: http://www.tinasherbs.com/
I'm 68 and have had RLS symptoms for about 25 years, mainly the urge to get up and run when I sit down in the evening or go to bed. tingling of the extremities began about 7 years ago, and other problems were ruled out. I have found progressive muscle relaxation to be helpful when I go to bed. More recently I have discovered that just my wiggling my toes and fingers very slightly for about one minute, relaxing for a minute, wiggling again, helps. While wiggling most of my symptoms go away, and are reduced slightly after each minute of wiggling. Usually 4 or 5 of these minute sessions and enough to reduce the tingling and restlessness to a level where I can go to sleep.
I asked my doctor to run a ferritin test to see if I should take iron supplements. He would not authorize the test, saying I should just take a supplement for a month to see if it helps. But my pharmacist told me not to take the supplements unless I show a low iron level, as there are dangers in taking iron supplements.
Any comments on the above two items-- wiggles and iron/ferritn level test --would be appreciated.
Many RLS patients use similar techniques (like your wiggling) to get relief, but usually the relief is unfortunately quite temporary and short lived.
Your HMO doctor should order the serum ferritin level and if under 35-45 (higher than the accepted normal values from most labs) then you should take iron supplements. You should not take iron supplements without checking this level first.
It does sound like RLS. It may be that when you go to bed that you are able to fall asleep before the onset of RLS symptoms occur (which would then prevent you from falling asleep). When you wake up at 4 am, the symptoms obviously occur quickly enough (before you can get back to sleep) and thus cause insomnia.
I have been taking Mirapex for 4 years now for my restless legs and am now taking .375mg about 6 o'clock every night. I am about to go on a trip and am anticipating the usual difficult time on the plane when I have to mostly stand up. My doctor advised me to up my dosage before my flight. Should I increase my dosage the day I fly out or the day before and If so how much of an increase should I take?
Thanks so much,
Now I am having problems with insomnia (for different reasons) and found that over the counter sleeping pills made me unable to stay still all night! It is an awful feeling to be mostly asleep while my body remains awake and "kicking". My husband was not too appreciative either...
Are there any studies on antidepressant (withdrawal) or antihistamines causing RLS? I am just curious, and a little concerned about developing this syndrome.
Thanks so much for your time,
Right now, I am taking 1.0 mg of Mirapex at night. I was unable to fall asleep and stay asleep (side effect); of course the daily migraines continued. My doctor put me on Ambien which I have been taking and falling asleep and staying asleep; but the daily migraines continue. I of course will discuss this with my doctor, but how high should I increase my nightly dosage? Should I take some during the day? And I understand that Ambien can be addictive?
It would be very unusual for PLMD to cause migraines. It is likely that your migraine headaches are totally independent of your PLMD problem.
PLMD is often misdiagnosed. It does not really matter how many leg jerks (PLM's) you have while asleep unless they cause arousal. The PLM arousal index (how many PLM that cause arousals per hour) is what determines whether or not the PLM's are causing problems by disturbing your sleep. Many doctors do not realize that and try to treat the non-arousal PLM's. We only call PLM's with many arousals (usually over 25 per hour) PLMD (the D stands for disorder).
I also have white matter changes in the brain and am wondering if this could be related. Is this related to Parkinson's in any way? I notice my hands cramp up at times and sometimes I get severe cramps in my legs at night. I understand this will worsen with age. Is there research being done and what causes RLS? I also have very bad nightmares even with the two meds I take and they seem to be worsening.
So I have worked out a compromise: two tabs Ultram at 8 a.m. followed by one tab at 3 p.m. (if needed), then one tab of Vicodin at 9 p.m. This regimen has kept RLS from disturbing my sleep (even though I can sometimes feel it trying to work) and the Ultram helps somewhat with my chronic back pain. I am seeking the advice of an orthopedic surgeon regarding the back pain and should have his diagnosis and recommendation next month.
I have had two sleep studies performed and have been diagnosed with RLS as well as severe nocturnal bruxism. For the RLS I am currently taking 1mg of Requip before bed. The Requip has basically eliminated my RLS symptoms, however, I have struggled tremendously with controlling the nocturnal bruxism.
The second sleep study was performed while I was taking the Requip and confirmed that my RLS was under control (RLS index of 4), however, I was still getting zero stage 3 or 4 sleep due to the nocturnal bruxism. Has there ever been any link detected between bruxism and RLS. They both appear to be central nervous system disorders?
If so, are
there any recommended treatments? I have tried numerous types of splints to
control the bruxism with little success.
I have tried just about everything for my RLS/insomnia and landed on 2-3 Ultram spaced out between 5 and 9 PM, and then 1 1/2 25mg Seroquel about 30 minutes before bed for sound sleep. Do I need to take a drug holiday from the Ultram using Vicodin? I get about two migraines a month for which I take Vicodin. If I have needed Vicodin during the day I continue it in the evening instead of the Ultram.
Is there need for a more regular, structured, drug holiday from the Ultram? I have been using it for about 6 months now.
A Response from Devi
If I were to take a specific holiday and not just rely on my migraines to
dictate them, with which drug would you suggest I do this? Vicodin, or
something else? The standards of Mirapex or Requip do not work for me.
When I first had my problem with RLS, my doctor put me on Klonopin and I
had the most horrible year of my life getting off of just 1 mg a night. That
horrible year lead me to believe that I was addicted to it and that concerns
me that I may have a lower tolerance for addiction.
Mahalo from Hawaii,
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