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I have read the letters where you stated that the Sinemet is no longer used for our problem. I will speak to my doctor about the Mirapex. However, my neighbor is an OR Nurse (RN) and she called me the other night after assisting a neurosurgeon with the implanting of an Spinal Cord stimulator for an RLS patient. Have you ever heard of this new treatment? This procedure is suppose to eliminate the use of any drugs. If this is available and is in fact used, this is the route I am thinking of going.
I don't know if this has affected others who have taken Sinemet or not, but it effects my very short term memory, i.e., I lose my ability to remember things I have just done. The memory loss is only for about a 48-72 hour prior time frame and eventually I will remember. For instance, if I put something "away" and am asked 8 hours to 2 days later, I can't remember what I did. But after about 4 days then I will remember. I never had this problem before taking the meds. I am tired of living like this. I need to write down meds I take so I don't overdose on them and keep notes for myself.
Thank you for your time and any information you have will be greatly appreciated.
Karlene H. in the High Desert of California
Sent: Saturday, October 26, 2002 2:19 PM
Subject: RLS symptoms or something different?
I have uncontrolled limb movement symptoms that don't all seem to fall under RLS, from what I know. But my doctor thinks it's RLS. Could you offer some advice?
I have two general symptoms, which come and go depending on the day:
1) Daytime "twitching" -- when minor, I feel my hip flexor twitch periodically. When bad, I'll notice my thumb, my pectoral muscles, ankle, etc... generally any extremity will just twitch. I do not have any cramps or otherwise "creepy" feelings, other than that twitching is disconcerting and is itself "creepy".
2) Nighttime kicking -- I'll kick myself awake, usually via more drastic hip flexor movement, and usually during phase 1 sleep. There was a night last week where I remember being awakened at regular intervals at 2, 4, and 6 o'clock. The symptoms seem somewhat disjoint; I actually rarely, if ever, feel the extreme kicking while I'm awake. There are nights where I will have absolutely no daytime symptoms, even while lying in bed waiting for sleep. However once Phase 1 sets in, I can kick.
I can then wake up, sit there, do whatever, and not feel a kick, but then I drift off to sleep again and I kick... I've tried both Requip and Mirapex and they both help the daytime symptoms (Requip better). But while 0.5 mg Requip can calm daytime symptoms, I'll be on 2mg and still kick awake at night as though I hadn't taken anything.
Finally, I've had this going for about 3 years now. The first 1.5 years I only had the nighttime symptoms, then more recently the daytime symptoms, which are getting worse. Does this sound like RLS to you or are there other possible causes? Not to bias you with thoughts but I know the colon polyps and the like run in the family, etc...
Thanks in advance,
You do not have RLS which consists of creepy-crawly feelings in your legs
while awake combined with an almost irresistible urge to move your legs.
You may likely have PLMD (Periodic Limb Movement Disorder) which are the leg
jerking problem that you are describing.
Mirapex or Requip usually work well for the daytime and nighttime PLMD
problems. In your case, the addition of another drug (sleeping pill,
Neurontin, pain killer) may work better than increasing the Requip any more.
I did not have the prescription filled ,so it turned out to be a 150 mile waste of time!) I'm so tired of being treated like either I'm a hypochondriac or a Looney to be humored. I wanted to slap him across the face. Not a smart choice, but I think I could have derived some satisfaction (before the gents in white jackets came to haul me away.)
I found a doctor in my state through this site who handles sleep disorders. I will be calling her Monday (hoping RLS is one of the disorders she deals in). I'll know when I call.
Thank you for taking time to read this. I feel there IS a light at the end of the tunnel now. God Bless you,
Sent: Wednesday, October 30, 2002 9:11 AM
Subject: anesthesia role?
I had a knee replacement in mid-August. Since being home (and off the pain meds) the RLS has exacerbated UNBELIEVABLY, until sometimes I think I am going to go crazy. Has the anesthesia played a role in this, or is it my imagination? Secondly, if it is to blame, will the RLS eventually settle down and behave? I'd appreciate your thoughts on this.
Maryam J., Tucson
Trauma, such as surgery, commonly will trigger or exacerbate RLS. This is the more likely cause of your recent RLS worsening rather than the use of anesthesia. Unfortunately, once worsened, the RLS usually stays that way.
Sent: Wednesday, October 30, 2002 10:17 AM
I've had sporadic periods of RLS at bedtime for years that would come
and go with no apparent trigger that I could identify. I began taking
anti-depressants 3 years ago ( first Paxil and then Celexa for the past 2
The episodes of RLS disappeared coincident with the beginning of treatment but they have begun to recur in the last 4 months. In addition and more troubling; chronic diarrhea, teeth grinding during sleep , and gum bleeding profusely when I brush, my gums and tongue have become quite tender.
The combination of symptoms seem an awfully random collection of " very rare" side effects associated with Celexa. My doctors don't seem to agree on the relatedness. I've read some articles (mostly promotional) about the benefit of taking Immunocal while weaning off anti-depressants.
Does this have any clinical benefit and are these symptoms likely a side
effect of Celexa?
Thanks in advance,
It is very difficult to answer your questions about the side effects of Celexa. Anything is possible. We can often decide the issue by stopping then restarting the drug and watching to see if the side effects go away then return.
I do not know anything about using Immunocal, but normally there is no concern about weaning off of antidepressants except that within a few weeks the depression may likely return.
Sent: Wednesday, October 30, 2002 2:11 PM
Subject: Requip to Permax
I'm switching back to Permax, which was effective for me for a couple years. I don't know how much dosage will be needed with Permax. As I taper off of Requip over a 25 day period, I'm starting the Permax at .05 mg, 3 times daily for the first 5 days; then up it to .10 mg, 3 times daily for the next 5 days. Is this going to be too rapid with the Permax? Or will I just have to give it a try and see how I react? I didn't have much in the way of nausea or other problems with Permax before, but I wonder how the two meds will mix when I start this transition.
It is difficult to predict how everyone will react to changing from one drug to another. I have several patients who get tolerance to one dopamine agonist then rotate with another. I even have one patient who changes from Permax to Requip and then to Mirapex every few months.
Most patient just stop one medication then go to the equivalent dose of the other. There is no reason however, not to do as you are doing by tapering off one drug while ramping up the other. In general, Permax .05 mg = Requip .25 mg = Mirapex .125 mg. In some patients the lowest doses noted above of Mirapex and Requip = 2 of the Permax .05 mg tablets.
I started taking RLS medication in August 2002 after finding RLS info on the web, and then going to a neurologist. He prescribed .5 mg Mirapex just before bedtime. Prior to this, I was taking Vicodin as needed to get some "good" sleep at night.
My first Mirapex dose caused terrible nausea, to the point that I was close to fainting. I managed to slide my body off the bed onto the floor, keeping my feet up on the bed, broke out in a profuse sweat to where I was soaking wet, and then cooled off as the I started to recover. This happened 3 times during the night.
The nausea lingered until about noon the following day. A follow-up call from the doctor suggested that I switch to a lower .25 mg initially. I still felt some mild nausea with this lower dose, but nothing like the first night. About 3 weeks later I increased to .5 mg, still having some nausea but it was getting to be less of a problem.
Question #1: Is this nausea reaction a common side effect? I did take 7.5mg of Vicodin at 1am that first night to help me get to sleep. Did that contribute?
I am currently taking1mg dose of Mirapex just before going to bed at about 11pm. I have not taken Vicodin since that 1st terrible night. But I'm about ready to try it again. I am still having problems getting to sleep, and getting restful sleep.
My neurologist would not prescribe anything to help the sleep problem. I no longer have the severe RLS feelings in my legs at night, and do not get up and pace the floor. But I'm still very restless, maybe getting 6 hours of "half-sleeping".
Question #2: How do I know when I am on the correct dose of Mirapex, and what can be taken to improve "good" sleep time?
During the day, I am sometimes tired - probably due to inadequate sleep at night. But there are times when I get so terribly tired. This is like a sleep attack, in that I almost have no control over it. It's most common just after eating, and lasts about an hour.
During the most recent/severe occurrence, I dozed in a semi-conscious state, partially aware of things around me, but had totally no control over my body. I've also learned to be extra cautious if driving after lunch. If I take a walk when feeling like this, I feel light headed, like I'm in a cloud and/or a little confused.
Question #3 Is this type of extreme fatigue common to RLS, and have others experienced a connection to eating? Or is this entirely some other condition? (Note: I also take Prevacid once a day in the morning).
My daytime job requires a fair amount of sitting. My co-workers refer to me as Jack-in-the-box because I get up so much. I often just can't sit still and focus on one task for more than maybe 10-15 minutes.
Question #4: Could this be a RLS symptom also, and would taking Mirapex during the day also help this? (If so, how should the dose be determined? Same as before bedtime? Or should the current total dose be spread over the day?)
Question #5: What RLS symptoms might one have above the waist (feeling like my arms and body are shaking, but they are not? Etc.).
Question #6: Is it uncommon to have RLS symptoms both day and night?
Thank you for all of your support through this web site. You've help guide so many patients to be more knowledgeable in discussing this with their doctors. We sure appreciate it!
Hello my name is Rachel IM 28 years old. I am almost 4 months pregnant. I have been recently diagnosed with RLS and I am very scared. The feeling I get in the night is a feeling of complete weakness in my arms and legs. The only relief I get is to get up and move.
Most people describe it as a need to move but mine seems to be a need to move due to fear that I can't move. My symptoms get worse everyday. So this is my question. Is this a "normal" feeling of RLS of do you think I have been misdiagnosed? It is 1:30 am and I am still awake because I am scared to sleep.
Also do you
know if this RLS has ever been known to cause MS or even muscle or nerve
What could I use , how much, and how long is a drug holiday supposed to be? Also, because of our insurance, I may have to switch from Ultram permanently to either Darvon, or Vicodin. I'm really upset about this because it was a long process finding something to control my RLS.
Before we discovered using Ultram with the Mirapex, I took 4 mg of Mirapex a day to get a little relief . Nothing else helped me. I got RLS after I took antideppressents and now I have it permanently.
Without medication, the RLS starts about 9:00 in the morning and I pretty much have it all day and all night. I have it in my shoulders and arms also. Without the Ultram and Mirapex, it was a nightmare. I'd rather be dead than live like that again. Can you give me any advice?
What a wonderful website! My story is like so many others, have been fighting "the monster" most of my 68 years. Finally had sleep study a year ago and was diagnosed with sleep apnea and PLMD. I am on CPAP and Mirapex .25 to .50 daily.
My other problem is arthritis. I have taken over the counter drugs till nothing helps the pain and stiffness. My question is---what would you suggest along with the Mirapex to take care of arthritis symptoms. My family doctor is not very knowledgeable about RLS and PLMD.
My insurance will not cover the Ultram mentioned in so many notes. What about Celebrex? I appreciate any advice and thank you in advance.
I finally have to admit that I do actually have RLS. I am not really looking forward to years of having to control it with medication, but I can't go on with this any longer. I have noticed that if I take any Sinutabs or cough medication that my symptoms get twice as bad and I maybe get 3 hours of sleep.
I work 8 hours a day and have two small children that need my attention for the rest of the waking hours. I can no longer function on a few hours of sleep a night. I am very worried about addiction to any kind of drug, but like I said I am desperate to fix this, can you please help me?
Firstly, stay away from over the counter cold remedies as almost all of them contain antihistamines which dramatically worsen RLS. You will likely have to take medication (just like patients with high blood pressure, diabetes, high cholesterol, etc. must take medication) or else you will be quite miserable.
Sent: Wednesday, November 06, 2002 1:44 AM
Subject: restless leg
I was raised with RLS, so it is a habit of mine to shake my legs, everyone asks me if I'm nervous!!!!! I just turned 36, when I was 34it started going into my hands, Imagine, this is how I sleep both feet stuck between the end bed board, and my hand tucked under me.
My doctors have given me Soma, which is a muscle relaxant. It's not the muscle, it's the nerve. I was prescribed Trazodone witch enflamed it, but if I took enough I went to sleep.
What can I do???? ......I fly every every weekend and it is MISERABLE!!!!!!
Neither Soma or Trazadone are indicated or in any way helpful for RLS. Mirapex or Requip, when taken correctly should make your life go back to normal and you should have no trouble traveling at all.
Sent: Thursday, November 07, 2002 9:41 PM
I have recently been taken off of Trileptal and Zoloft. I have never had a problem with restless legs before and now since I have been off of the medicine, the leg problem has arose (with a vengeance). I barely sleep even though I am so tired I can barely move.
The best way I knew how to describe it to my doctor is that my legs just won't go to sleep and they keep me up and jump around on their own a lot. Can this problem be related to going off of these medicines? Could I have been taken off of them too quickly?
The reason I ask that is because for awhile after I stopped the medicine, I would get so dizzy-like and I could barely concentrate on anything. I almost felt like I was in a trance and I was afraid to drive let alone walking up and down stairs.
Please help me. I am getting desperate for a solution to this menacing problem.
Trileptal is an anti-seizure drug and its effect on RLS in unknown, but many anti-seizure do help RLS, so the same is possible with stopping this drug. There is really no way to tell without restarting each drug separately and stopping them again. The abruptness of stopping these medications likely has little to do with the problem.
Sent: Saturday, November 09, 2002 10:59 PM
I am a 54 year old woman. I had kidney cancer surgery and colon surgery in a manner of a few months of each other. A month or so after I had these two surgeries I started getting tingling in both of my calves. Also when I would get up to go to the bathroom at night, it felt like there was blood running down inside my legs.
It was such a scary and weird feeling. I thought I must have some form of a blockage to feel this blood sensation. I would tell the doctors and they would look at me like I was nuts! As time went on I would wake up with this terrible pain like someone was scooping the back of my calves like scooping a melon against the rind.
It was excruciating. I would tell the doctors and they all looked at me like I was crazy. I told the Neurologist I wanted to go somewhere for a 2nd opinion. He sent me to another Neurologist and I told him all the above symptoms. While he was examining me I asked him if this was all just some kind of phantom pain? He said NO! He told me about this RLS.
I asked him if he had ever heard about the blood running down the leg part. He said that he had never heard it described that way. He said people would say liquid or Pepsi. I too almost cried and told him I could kiss him just because I was not some crazy nut. I also have rushes of hot and cold that run up and down my legs? Is that a symptom that anyone else has.
I am so fatigued. He gave me Mirapex and told me I would sleep. It did just the opposite. I was wide awake all night like I had drank 15 cups of coffee. I also had sweating and chills. My regular doctor then put me on Effexor. By day five I could not get a whole sentence out of my mouth. It was effecting my memory.
They have now prescribed Requip. I am scared to take it. They say on the Pharmacy notes that it is used to treat Parkinson's disease. I am not one who like to take a lot of pills and sometimes the side effects scare me more then the agony. I also have a lot of body cramps. Mostly my legs and feet but some times in my stomach back and other places.
I know that my mom had jumping legs and did not sleep a lot at night. she is deceased now and its kind of ironic that you can get on the computer and talk to other people and hear that you are not the only one going through this and that it is just not all in your head.
Nice to vent,
If moving your legs relieves the feeling in your legs (at least for as long as you are moving them) then RLS is very likely as your problem. Mirapex and Requip are both Parkinson's disease drugs and are very similar. There is a reasonable chance that Requip may cause the same problems that Mirapex caused, but one can never be sure until you try it (only you can decide whether or not it is worth the risk).
Other choices would be pain killers at bedtime (Ultram or the narcotic pain medications) or possibly Neurontin. You should not have to suffer with proper treatment.
Sent: Monday, November 11, 2002 8:32
Subject: Problems with PLMD
I was one of those people who successfully used marijuana for years to deal with my RLS. 15 years ago I stopped. I had small children and didn't want to mess with it. A few years later I wound up at the Stanford Sleep Center where I was diagnosed with RLS.
I have been using Sinemet 10/100 3 ea. since with
good results most of the time.
Apparently I am fortunate in this regard. I also take Paxil 20mg at bed time. In addition to RLS, I now think I also have PLMD.
My side of the bed is always messed up and my wife tells me that my legs are moving a lot. I am reluctant to change medications but I wonder. Do any of the medications that have been discussed work for PLMD that I could use with Sinemet?
Most of the RLS medications work fairly well and can be
combined with Sinemet. Choices include sleeping pills (benzodiazepines or
Ambien/Sonata), pain killers (Ultram or narcotic) or Neurontin. You have been
lucky with 3 Sinemet per day as problems with augmentation and rebound start
occurring frequently at that dose.
Mirapex or Requip work as well or better than Sinemet for RLS and also work very well for PLMD (especially as the dose can be increased without concerns for rebound and augmentation).
I went through a horrible summer not knowing what was going on with my body. Which then brought on anxiety attacks. I have had some relief with Paxil and Xanax. My doctor just prescribed Mirapex at night for me.
I have had very bad nights since taking this drug. I am trying it for a week and then going to call him. I would love to hear from anyone who thinks they have RLS throughout their body like me. This has been a very depressing time in my life.
I went from a very healthy 40 year old woman to one who feels sick daily and does not know if I will ever find true relief. It scares me so much that one of my children will be afflicted with this horrible disease. I pray constantly that they won't.
If anyone has any good information for me I would love to hear from you.
I've written you several years ago about pregnancy and RLS. I now have a two-year old, and take Permax for RLS/PLMD, with only moderate success in relieving my symptoms.
My brother works in law enforcement, specializing in illegal drug control. I spoke with him about medical uses of marijuana, and he forwarded me some information on a legal and prescribable form of THC, called Marinol. (Prescribing information can be found at www.marinol.com.)
Are you aware of anyone using this legal form of THC off-label for RLS/PLMD, and if so, are the results at all promising?
Thanks for serving those of us with this very inconvenient syndrome.
Sent: Friday, November 15, 2002 7:03 PM
Subject: RLS & tramadol holiday
I believe that my RLS is caused by a severe case of dural ectasia, secondary to Marfan's syndrome. I have gotten full relief from the RLS for the last 18 months from tramadol. I started at 25 mg 3 x day, and about six months ago had to increase it to 25 mg 4 x day because the symptoms were creeping back.
Now, again, I'm noticing the symptoms coming back and I don't want to increase the dose again, so I'm thinking of trying a drug holiday. Can you give some advice about how to do it, i.e. medications I can substitute to relieve the symptoms, how long I need to be free of the tramadol, and whether I should do it all at once or gradually.
I should mention that I also have Hepatitis C (from a transfusion during one of three heart surgeries) and therefore I need to keep my liver health in mind when selecting medications. I also take Sotalol, Cozaar, Warfarin, low dose aspirin, several vitamins and calcium.
Thanks for any advice you can offer,
Ultram (tramadol) is a good medication for RLS, but I only like to use it after trying other medication (that are not pain killers). Mirapex or Requip would likely work very well (and be safe) for your RLS and eliminate the need for Ultram. If these medications do not work then pain killers may be used.
I have many patients alternating Ultram with narcotics like Vicodin. Some will take alternate every few days per week and others will alternate by week or month. Drug holidays are very poorly defined for Ultram, but staying off the drug for a week or so should do the trick.
My RLS symptoms usually do not start until mid-to-late evening, and appear “under control” with Mirapex. I have reduced my Mirapex from 1mg to .75mg, and just started taking 5mg of Ambien. The past 2 nights with Ambien have been the first decent sleep I’ve had in quite a while – except for the few times when I took Vicodin. Last night I still woke up 4 times that I remember. But at least I got some good “deep sleep” time.
The best way I can describe how I feel during the day is similar to RLS, but more like creepies or jitters inside my whole upper body. It’s a little like the ache feeling one might have with the flu. I sometimes have this all day, or it sometimes starts in the afternoon while sitting at a desk, and gets worse as the day progresses. And the condition seems to be getting worse.
I also have a problem sitting still at my desk during the day, and always want to shift around in my chair, or get up and move around. In continuing my search for information on the web, I came across Akathisia that sounds like similar symptoms.
Question #1: Is Akathisia related to RLS? And is it common to have both?
Question #2: Some of the web information suggested that Akathisia is drug induced. Could my current medication (.75 mg Mirapex; 5 mg Ambien; and 30 mg Prevacid) cause the Akathisia to get worse? Are other causes known?
Question #3: Is it common for an RLS patient to have to remain on drugs (Mirapex and Ambien in my case) indefinitely? Or might symptoms eventually improve?
I have other symptoms in addition to RLS, many common to those associated with fibromyalgia (without the pressure point pain) and CFS. And although my sleep problem has improved, it still is not what I would like.
Question #4: Are there tests that you might suggest I discuss with my neurologist?
Question #5: Are there any other things I might explore, based on this limited description?
Thank you again for all of your support through this web site. Your work is sure appreciated!
J.B. (I’m a 55 years old, male, 6 ft, and 155 lbs.)
Sent: Sunday, November 17, 2002 9:54 AM
Subject: PLMD Treatment
I am a 58 yr. old male. I have had PLMD for 8 yrs. I have been taking amitriptyline during this time as it is the only drug that has helped me sleep. After talking with my doctor, I am now tapering off of amitriptyline because it is causing me to be extremely sleepy in the early afternoon and require 2-3 hours sleep and am even tired when I get up.
I have been to 2 neurologists who have prescribed Mirapex, Sinemet, Permax, Neurontin, Klonopin, Tylenol #3, Methadone and Celexa. None of these meds have helped and made my sleeping worse. None of the doctors were concerned about taking these with amitriptyline.
Wouldn't there be some interaction with taking the medications while still taking amitriptyline? If so, should I retry some of these and which ones? After tapering off of amitriptyline, my doctor would like me to try topiramate (Topamax). I looked it up and found it is for epilepsy. Would this type of drug help?
There is no known reactions with the medications that you have tried and amitriptyline (Elavil). If you have not done well with the previous drugs that you have tried, I would generally not recommend trying them again.
Topamax has no known proven benefit for PLMD, but like Neurontin (another epilepsy drug), this class of drugs may sometimes be helpful for RLS.
Sent: Sunday, November 17, 2002 4:35 PM
I have just been reading the letters from sufferers of RLS and am overwhelmed by the amount of suffering this affliction causes and amazed and comforted by the similarity of symptoms to my own case. I am 78 years old and have had RLS for over 40 years although only in the last 10 have realized it was a common problem and actually had a name.
I have one friend who also has the problem and is the only person I have been able to commiserate with over the years. No one else really understand what I am talking about. We refer to it as the creepy-crawlies or the heeby-jeebies, both of which names I have read in some of the letters. For years I self medicated with over the counter codeine which is available in Canada but it lost its effectiveness.
I am fortunate to have a doctor who is sympathetic and recognizes this as a legitimate ailment. She put me on a drug called called Trazadone which helped for quite a while and then became ineffective. This seems to be common with many remedies. I am now taking Trazadone and Levocarb (a Parkinson's disease type drug) which is helping. I take it an hour before bedtime and in about half an hour feel slightly nauseated however this is gone once I lie down. I sleep then for five hours and am symptom free for another two or three but don't always return to sleep.
Sometimes I have to take a hot bath in order for the medication to kick in. In some ways this is a great relief as didn't have 5 consecutive hours of sleep for many years however I think it has also exacerbated the problem as I now suffer from daytime RLS which I didn't have before. I used to look forward to an afternoon nap or watching early evening TV but now get very uncomfortable and have to constantly move.
Some people talk about taking their own life and I have certainly had those thoughts and particularly worry about the time when I might not be in control (in a nursing home for instance) and free to roam around, take hot baths and showers or have access to the medications I want. Would be happy to hear from fellow sufferers.
The levocarb that you are taking is likely a generic for Sinemet. This drug very often worsens RLS once the dose is increased over 1-2 tablets per day. This may be in part or completely responsible for your RLS occurring earlier in the day.
A better choice would be to change to Mirapex or Requip which will should work as well or better than levocarb and not cause worsening or your RLS.
Sent: Sunday, November 17, 2002 8:37 PM
Subject: Sinemet problems
I have had a restless leg/periodic limb movement problem for well over 8 years (am 53 year old white female). Current neurologist (not a sleep specialist) has prescribed Sinemet which helps some, but I need help going to sleep because my anxiety level is so high worrying about having an attack. Ambien helps tremendously and I don't feel hung over. But I've been told I have to go "off" Ambien every other week or so - and those nights are terrible. I also have a disc bulge at L4/5.
I have had success with Sinemet (first time in years) beginning about 6 mos. ago after years of unsuccessful options (nerve root blocks, PT, chiropractic, acupuncture, Neurontin, Ultram, amitrypline). My problem (pain/spasm/jerk) runs along the sciatic nerve root path (90% of the time on my right side--very occasionally on the left) - from my hip joint over my thigh to the calf to the second toe. The spasms run this path and reoccur every 15 seconds or so when an attack happens. I toss and turn, stretch, rub, dig my knuckles into the butt joint) I can only get relief if I get up and walk. For years it only happened when I was supine and happened either as I was falling asleep or woke me at 2, 4 & 6 a.m. The muscles along that leg are always really tight, especially the day after a bad night. The Sinemet has helped some - but seems to be wearing off now. I seem to need to take it more often in the night - it will curb an attack after about 1/2 hour. I start with 2 25/100 at 9 p.m. 1 at 11 p.m. another at 4 a.m. Tried the CR but it didn't work - seemed I had to augment it with a 25/100 too often.
In the last few months, however, I have attacks during the day or earlier in the evening or more frequently in the night after taking my usual dose. My biggest problem nights happen after sitting in an old theatre bucket-seat, slouching on a couch, or poor sitting in general. But sometimes it will happen mid day. I do sit a lot, but work for myself which allows me to take needed breaks, walk and vary my activities. I try to space the Sinemet out, but frequently still get attacks at 4 a.m. in particular.
My questions then:
1. Is poor posture/pelvic position triggering some of these attacks?
2. Can you tell me if increased dosage of Sinemet will cause constipation and if there is any connection with constipation and increased RLS or PLMD? Could the full bowel be pushing on something?
3. I worry about the constipation, augmentation and brain issues, like memory issues, forgetting common words, slurred speech -- how do you know when it's lost its effectiveness - and how much is too much? And the fact that my neurologist is not an RLS specialist.
Thanks for any advise and guidance,
I am not sure what is causing the constipation. It might be caused by a medication you are taking, but more likely there is some other cause. You should see your primary care doctor for this problem and in the meantime see if increasing the fiber in your diet (Metamucil for example) might help.
As you have already guessed, your problems are coming from the augmentation and rebound that invariably occurs with increasing doses of Sinemet (over 2 per day). Getting off of Sinemet and changing to Mirapex or Requip should resolve this problem. There is no real concern about tolerance/addiction with Ambien although it may not be a bad idea to take drug holidays (perhaps one weekend off every month or so) occasionally.
Posture, as far as we know, has nothing to do with RLS. Your poor memory and concentration may due to poor sleep quality due to your RLS (and current problems with Sinemet).
I've suffered with RLS since I was eight years old. I recently detoxed from Klonopin because I was so addicted to it. Since I detoxed, the RLS has gotten a lot worse! My hands and feet are affected severely. Around 6:00 p.m. not only do I start feeling RLS in my arms, hands, and feet but also I start itching severely in both extremities, my back, and down the back of my legs.
HELP, I'M GOING CRAZY!
My doctor has me on Requip. I take as low a dose as possible. I tried Mirapex and it made me so nauseated I couldn't take it anymore. Sinemet did nothing. I'm also frustrated with the Sleep Disorder doctor I'm seeing.
I'm just wondering if you've ever heard of these symptoms before??? Thank you for whatever help you can offer.
As you have stated, the choice of treatment is quite limited during pregnancy, which compounds the problem. Once your pregnancy is over, there are lots of good medical treatments for your problem.
Sent: Monday, November 25, 2002 12:12 AM
Subject: effective times for meds
My medications include 1 Ultram, 1/2 tablet of Xanax and 3 Requip at bedtime around 8:00 p.m. Then I usually wait about an hour before lying down. My legs begin aching around 5.00 p.m. but I can usually tolerate the pain and restlessness by using my "bag of tricks." until time for meds.
I don't think I'm taking my meds at the correct time because I have a terrible time getting to sleep. Once I do I can sleep for 4-5 hours - that's about my limit. Would you recommend spacing the pills differently to be more effective? And would it hurt to take another Ultram or Requip.
I'm going to try a trip to New York and the play doesn't start until 8:00 and , oh boy, that will throw me off schedule. Thank you for consideration and reply to this note.
Virginia/ 66/ WV
The problem may be the timing of your Requip. Although an hour may be sufficient time for many RLS sufferers, some need 2 hours or longer for Requip to be working maximally. Try taking the Requip 2 hours before going to bed and if that does not help (you should have no RLS problems when going to bed with this regimen) completely, then you likely need a higher dose of Requip. If you are doing well at bedtime with this regimen but still cannot sleep the entire night due to RLS, then you might need another Requip or 2 immediately before going to bed.
With the correct dose of Requip (whatever dose it takes to eliminate your RLS) you should not need Ultram or Xanax.
Ever since I've been on Requip, my reflux has worsened to the point that I have to sleep in a chair for most of the evening. My doctor told me to call my GI specialist to evaluate the Prevacid. My GI specialist told me to stop taking the Requip. By the way, larger doses of Mirapex also exacerbate my reflux symptoms. Any suggestions?
Sent: Tuesday, November 26, 2002 10:12 AM
Subject: Sinemet withdrawal
I'm 42 years old and was diagnosed with RLS almost 2 years ago. I also had Chronic Fatigue Syndrome. I take Sinemet 50/200 (1 1/2 tabs at bedtime). About 2 months ago, the chronic fatigue became much better and my muscles began relaxing, then I started having some Sinemet rebound muscle tightening during the day.
At my doctor's suggestion, I split my Sinemet dosage into a morning dose (1/2 tab.) and and evening one (1 tab). That helps some, but my doctor and I both agree that I need to get off the Sinemet. He's unsure on how to proceed with that. Do you have any suggestions as to how to get off Sinemet with the least amount of withdrawal symptoms? I only have RLS occasionally now.
My biggest problem is muscle tension in my back and I'm unsure just how much of that is the Sinemet which is one reason I want to get off of it. I'd appreciate any help.
Gina in New Mexico
Getting off Sinemet can vary a lot from patient to patient, but here is my technique that seems to work well for most RLS sufferers. Start on Mirapex or Requip (in your case one tablet of the lowest dose) one hour before bedtime. At the same time decrease your nightly dose of Sinemet to 1/2 tablet from one tablet. If you still have some residual RLS, you can increase the Mirapex or Requip by 1/2 or one tablet the next day.
After one week, discontinue the Sinemet at bedtime and see if you need an additional 1/2 or one Mirapex or Requip to replace it. Once off the nighttime Sinemet for a week or so, you should be stop you daytime Sinemet dose and stay off the drug forever.
As you taper off Sinemet, you should have a sleeping pill (Ambien for example) available in case you have trouble sleeping.
A Reply from Gina
Sent: Thursday, November 28, 2002 6:37 AM
Thank you for your prompt advice regarding Sinemet withdrawal. I've printed it out and will get it to my doctor as soon as possible.
Another question I have is about photophobia and RLS. I've been sensitive to varying degrees all my life to flashing lights. (even back in the 70's during the disco years - a couple of hours with those strobe lights and mirror balls would keep me up all night).
We have a large screen TV and the last couple of weeks it has bothered me worse than ever. The flashes of bright lights, especially during commercials, really seems to bother me. It doesn't cause pain, it just seems too bright. Car headlights even seem brighter than before. I've made sure not to watch TV the last three nights and I'm going to sleep much faster than usually. When I do watch TV it seems to make my muscles more tense. Natural sunlight doesn't bother me at all.
My doctor suggested that it's probably always affected me, but now that I'm feeling better, I just notice it more. Is there a correlation to RLS and photophobia?
Gina in New Mexico
There is no known relationship between RLS and photophobia.
Sent: Saturday, November 23, 2002 11:04 PM
Subject: Leaping legs
I have suffered from RLS for a number of years but have been able to get through the worst until recently. I find it impossible to sleep or even to go to bed some nights as my leg feels as though it needs to be moving constantly. If I sit or lay down then the "leaping" starts.
It is only ever in my left leg and will "leap" ten times or more in a minute, however, I haven't been able to count how many times per hour as I just can't stay still for that long. Once I begin walking around the "leaping" stops - until I relax again. During the last six months the RLS type feeling has been happening in both of my arms.
Now I'm really in a mess and don't know what to do for relief. I am currently taking Cipramil (mild anti-depressant) and I have recently started to have massages to see if that helps. Any advice you may have will be appreciated - especially with reference to my arms.
Once your RLS is occurring in your arms, you clearly have severe RLS. It is unlikely that you will make the problem better without good RLS medication such as Mirapex or Requip. This should help stop your leaping legs and arms.
The Cipramil (called Celexa in the USA) is an SSRI type of antidepressant medication that worsens RLS more than it may help it. If you really need this medication, you may need a mildly higher dose of Mirapex or Requip to treat your RLS.
I have a question I have had 2 back surgery's and am going in for a 3rd surgery shortly. Why does RLS seem to be triggered by back problems? I am quite concerned that this 3rd surgery will increase the problems that I all ready have.
I have been on Neurontin for 3 years and also Mirapex . 25 and OxyContin 40 mg x2 for my back. If I run out of the narcotic's then my RLS seems to kick in with vengeance why is this?. Am I going to have to have the narcotic for the rest of my life. And does this ever go away? I also sometimes use soma for my back it seems to help a small bit.
Sent: Wednesday, November 27, 2002 9:26 PM
Subject: Hoppy legs
I am a 48 year old female. I have had "hoppy" legs since I was a small child. When I was young, it was manifested most significantly when we would drive in the car late at night coming home from relatives. I would try to straighten my legs or move them to make the feeling stop and it could become so bothersome that I would cry...
As I got older it was significant when I traveled, especially on airlines, I would have to get up numerous times. In my late 30's, I had surgery on my hip and due to a nicked sciatic nerve, developed RSD, which caused my legs to have shooting pain, like fire.
I had an electrical shock treatment where they hooked my spine directly to electric current to shock the nerves into resetting. While that did work on the RSD, it did nothing for my "hoppy" legs.
Now, it is problematic. Every night I notice my legs are "hoppy". Even straightening them out doesn't help. It seems to be getting worse with age.
RLS does get worse as you get older. Mirapex or Requip should be able to take care of your "hoppy legs" and let you live a normal life.
While on interferon (Betaseron and then Avonex) for my MS, I found that both my migraines and my RLS were getting worse and worse. When I stopped interferon both got better. Because there seemed to be a connection between them, I wondered if I were perhaps having vascular spasms in my spine that was putting pressure on my spinal cord, thus triggering the RLS.
I started trying my Maxalt when my RLS got beyond what a low level of Mirapex would control, and it helps!!! I'm hunting the net to see if anyone is yet doing research on this possible cause of RLS and the connection between it and vascular migraines.
Sent: Friday, November 29, 2002 7:31 PM
Subject: Question, please
I have had RLS on and off for the past 20 years. It worsens when I have mental stress. Now, when I exercise it's bad as well. I was given Ultram and have taken it for two years.
They told me Ultram wasn't a narcotic and wasn't bad for me or addictive, but after reading some of your answers to the letters it seems like you may feel otherwise. Please help.
Ultram (tramadol) is not a narcotic and has a minimal addictive potential. I have not seen or heard of any RLS patients having problems with tolerance or addiction to Ultram, but there have been reports of patients who use it for pain (generally when taken several times per day) getting addicted. When taken carefully (only when really needed) for RLS, addiction should rarely, if ever occur.
It is still better to take Mirapex or Requip before RLS symptoms occur to treat RLS rather than using the pain medications.
Sent: Sunday, December 08, 2002 8:21 PM
Subject: Quick questions
I have RLS and it definitely sucks. Anyway, you recommend Mirapex and Requip quite a bit. Can these drugs in anyway make RLS worse in the long run, even if they hide the symptoms?
Can they instigate Parkinson's disease? Another question, is RLS really just a mild form of Parkinson's?
Mirapex and Requip are safe in the long run. Most of the side effects that may limit someone from taking these medications usually occur within the first few weeks and they do not make RLS worse (such as Sinemet). They do not lead to Parkinson's disease and there is no relationship between RLS and Parkinson's disease other than they respond to similar medications.
A Reply from Sam
Sent: Monday, December 09, 2002 7:06 PM
Subject: Re: Quick questions
Thanks for the quick and informative response. I have some further questions: Can Mirapex effect dopamine levels in the brain or in any way permanently modify how the body produces or otherwise deals with dopamine?
If one were to stop using Mirapex, will there be anything different in how the body operates at all? I guess I am just paranoid about using a drug that plays with receptors in the brain. I'm worried about long-term side-effects. But at the same time, if Mirapex is safe then I want to start using it ASAP.
As far as we know, there are no changes in the brain due to using Mirapex on the long term. I have had patients stop this medication after using it for several years and other then the RLS symptoms returning back to the previous levels, no other changes were noted.
However, I am trying to conceive and have gone off the meds. It's been about 3 months and I am going through hell!!!! I am lucky to get a straight 3-4 hours of sleep a night. I am wondering if I will be able to stay off the drugs with out going crazy.
Anyway, I see a lot of different medications here that I have never heard of. I will mention them to my doctor.
Thanks for a great site!
After trying the anti-Parkinson's drugs, and then Ambien (which helped with sleep, but husband said my legs were constantly thrashing) I saw a neurologist who prescribed Klonopin. I am now taking 2mg at bedtime, still often awakening about one hour after falling asleep with RLS still. I take either 1/2 or 1mg more.
Sometimes my legs continue, and even my arms, but I am not comfortable taking more Klonopin, thus I am up some nights for hours, walking, stretching, and generally going crazy! Reading your information has peaked my curiosity about other drugs...possibly Mirapex. Can either of these meds be taken in conjunction with a low dose of Ambien?
My mother had mild RLS, I have it much worse, and my daughter began experiencing it at a younger age than my onset, so I do believe it is hereditary. It also is driving me crazy....I dread going to bed often, knowing what my usual pattern has become. I would greatly appreciate some feedback.
I should mention that I was on Premarin and have recently stopped this med. My RLS seems worse since that time, but I ceased the hormone because of all the "latest studies" and my doctor's suggestion that I try to do without it if I can.
Thank you for your time.
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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