Patient letters on RLS symptoms and remedies- Page 32

 

Kicking RLS/PLMD Patient


If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.

 

E-MAIL



Sent: Monday, December 11, 2000 7:15 AM
Subject: Questions on chocolate

Over the last couple of years, I've greatly enjoyed posting here and sharing experiences. Mirapex has been a tremendous success for me and with a couple of exceptions, I'm having mostly quiet nights and sleeping through the night, etc. It's those exceptions I would like feedback on.

I religiously avoid caffeine in all forms, however I just have the "gut feeling" that I'm finding it in various places anyway. Over the last month, I've had two nights that were strictly tossing and turning for me. While I know that anecdotal evidence is far from perfect, both of those nights I had had a cup of cocoa. Two for two, and no problems other nights.

Now, stating the obvious, we all know that chocolate contains caffeine. However, it's very important to note that:
(1) I read the labels before consuming anything (just in case) and on neither of these products was caffeine listed as an ingredient;
(2) chocolate in any other form (candy, pastries, ice cream, etc.) has never caused me a problem, and in fact I had a late snack of chocolate ice cream last night and slept like a log.

What are your thoughts? Strictly coincidence ?? Something unique to hot cocoa ?? As strange as that sounds, I will gladly give it up if need be. Thanks again for all your help over these past years !!

Dave R.

Medical Reply

Chocolate contains small amounts of caffeine, but a cup of cocoa contains significantly more. It is probably a matter of quantity of caffeine, not just the presence of it (especially when only trace amounts are in the foods you eat so they may not be labeled as such).


Sent: Monday, December 11, 2000 9:19 PM
Subject: What causes RLS?

I have suffered from RLS for approximately 1yr. Unlike most of the Email letters I have been reading the only thing that I do not have in common with most of the other peoples email I have been reading is my age. I am 28 years old.

I starting having this aching pain in my lower legs and was told by doctors it was do to my back problems I was having. I was diagnosed with having spondylolithesis. I had surgery on my back to relieve my back pain and leg discomfort. But unfortunately later found that my leg discomfort was caused from RLS.

I read one email that best describes the feeling as just wanting to cut your legs off. When my husband and I would be laying in bed at night he would always ask me, honey what can I do for you? And I would always reply GET THE SAW AND CUT THEM OFF! I was so thankful when I finally realized there were other people who had the same experience.

Yet to know that there is only relief when taking medication and that it will never go away is very,very hard to deal with. I have also tried everything from Bengay, hot bathes, Tylenol,Motrin, Tylenol PM, etc. Nothing works. Does anyone really know what RLS is caused from?

Tammy S.

Medical Reply

We do not know the cause of RLS yet although significant research is being done. There is no reason to suffer from this disease as there are lots of medications that work.

This is no different than high blood pressure, diabetes, asthma, etc. which are diseases that affect millions of people who must take daily medication to survive and the actual cause of the disorder is also not known.


Sent: Tuesday, December 12, 2000 5:47 PM
Subject: Your comment on my treatment of RLS

I have been suffering with RLS for about 8 years with the last 5 years being the worst. So far I have found that Tylenol #3 has been the most effective for me. I have tried Mirapex with no luck and now I am off the Tylenol #3 and they have me on the Neurontin. I'm currently taking 1200 mg at 5:00 p.m. and 1800 mg at bedtime and all it seems to do is make it worse and then in the am I feel like I have a hangover. I am scheduled to see the doctor 12/19 again, but it sure seems to be a large dose with no relief. Also what is your thought on the Tylenol #3.

Thank you for your time,
Barb M.

Medical Reply

Codeine (Tylenol #3 with 30 mg of codeine) works very well for RLS. To avoid addiction, you should take the lowest dose that helps you. Alternating with another non-narcotic pain killer drug such as Ultram may also help avoid this tolerance/addiction problem.

Neurontin helps many RLS sufferers, but it does not seem as if this is the right drug for you. Discuss with your doctor eliminating this drug from your regimen and reinstitution the Tylenol #3..


Sent: Saturday, December 16, 2000 9:16 AM
Subject: Needing info about dose and timing of Requip

I have had RLS for years and years and was so pleased and relieved when, as with others, I found out I was not alone out here. That it actually was a medical problem!

We live in Mid-Missouri and so are the last to be on the cutting edge, so to speak. My doctor knows nothing about RLS, so I have copied off material I have found on the Internet and she has tried to help me. When I heard about Requip being approved for RLS, I asked my very able and willing pharmacist about it, but he has only a couple on it for Parkinson's; he kindly printed off his information, took the information sheet out of a Requip package and let me have them to take to my doctor. I also downloaded the info re: Requip, from your site and included that.

I started with .25 MG at night nine days ago. The fourth night I slept 8 full hours with no problems, as I did the fifth night and felt like a million bucks. However, it has decreased since then. getting to bed about 1:30 and waking this morning like I had worked all night. I was told I could increase dosage in 7 days, but hoped I would not need to do that. However, I want that sense of being alive, again, and am ready to increase my dosage to .50MG. I am wondering if I should take the second pill in the morning and one at night, or does it matter when I take them?

Thank you for this site. I has probably saved my sanity,
Darlene J. H.

Medical Reply

Since RLS occurs for most only at bedtime, the best time to take all of your medication is 30-60 minutes before you go to sleep. You can increase the dose by 1/2 or one pill (of the .25 mg tablets) every 5-7 days as needed. If you keep having to increase above 3 tablets, then you might have to reconsider about changing to a different medication.


Sent: Monday, December 18, 2000 9:40
PM Subject: Correct Ferritin Level

I started working on my ferritin level over 6 months ago. I started out at 3 and after 3 months of 3 tablets of Feosol a day I went up to 43 on the Ferritin. After another 3 months at 2 tablets a day I am at 83. So now, my neurologist wants me to take 1 a day. Almost instantly I noticed some exacerbation of symptoms. I don't know if it's coincidental or not.

My question is: Does a person with a severe case of RLS and PLMD (210 kicks per hour documented) need a higher Ferritin count than the average person? Is 83 high enough for me?

Thanks,
Pat

Medical Reply

The best that we know is that ferritin levels above 45 are generally not associated with RLS symptoms. This number is from some of the research done, but obviously only applies to the group studied and may not be accurate for individual cases.

I would think that once your ferritin level is above 45, taking more iron than one tablet a day to maintain your ferritin level should be more than enough. As we do not fully understand the effect of iron and RLS, I cannot say with certainty that taking more iron would not help your RLS, but I doubt that you need more, even with a severe case of RLS (there is absolutely no data on iron, ferritin levels, and severity of RLS).


Sent: Wednesday, January 03, 2001 10:39 AM
Subject: On Mirapex too long?

I have been on Mirapex for about 2 years now and it takes more for it to work. I take .25 an hour before I go to bed. If I take anymore I feel like a zombie all night and the next day. I also have been very depressed while on this but I cant just keep trying a drug until I find one that works as I have to pay for my prescriptions. Can you give me any suggestions?

Thank you!!
Karen S.

Medical Reply

If your total dose per day is only .25 mg, then you are still on a very low dose (the average patient needs between .25 to .625 mg per day). It is possible that you may be getting tolerant to Mirapex, but at this low dose that is not too likely. It may just be that your RLS is slowly worsening and you thus requite more medication.

Some people do get sleepiness as a side effect from Mirapex (although generally it is at doses higher than 1 or 1.5 mg per day) and that can be a problem that limits its use. Although you are not keen on more trial and error experimentation with new drugs, a short trial of Requip may be helpful (Requip .25 mg = Mirapex .125 mg). See if you can have your doctors give you some samples (we do that all the time). It may have the same beneficial effects without the zombie effects.

Interesting enough, there has been a medical article recently describing the antidepressant effects of Mirapex (in higher doses).


Sent: Wednesday, January 03, 2001 6:31 PM
Subject: Anti-depressants & clonazepam

My doctor has me on Serzone & diazepam 5 mg at night to counter the RLS situation. Is clonazepam better (less grogginess, less addictive)? Is diazepam better for RLS & anti-depressant combination? Are there people who stay on diazepam for years & years if it's helping with their RLS situation?

Thanks,
Elaine

Medical Reply

Serzone (a good antidepressant) may potentially worsen RLS. Diazepam (Valium) can work reasonably well for bedtime RLS, but it does have a potential to cause daytime sleepiness and is addictive. It has a shorter half-life than Klonopin (clonazepam) so will likely cause less daytime sedation (almost every sedative will cause less sedation than Klonopin). Ambien is a better choice for less daytime sleepiness and addiction potential and has less chance of worsening depression.

Many RLS sufferers are able to use sedatives (Valium, Klonopin, Xanax, Ambien, etc.) for years without problems and continued effectiveness. A significant percentage, however, may end up having problems (addition/tolerance, sleepiness, increased depression), but it is impossible to figure out who will do well and who will not. The best way of avoiding these problems is to take the sedative medication intermittently (only a few nights per week) or if you must use it every night, take regular drug holidays (at least 2 days off every 2 weeks).


Sent: Friday, January 05, 2001 12:26 PM
Subject: RLS and Mirapex

Again I need your sage advice. I've been on Mirapex for about 6 months now (having gone through withdrawal on clonazepam when it stopped working for me) and I've noticed an increasing amount of muscle spasms in my legs, and joint pain. Also, in the past 2-3 weeks I've noticed much louder ringing in my ears (have had it mildly for years) and also extreme sensitive to sound. Every sound, like dishes clattering, certain musical notes, my husband's voice (I always thought his voice was soft and soothing) seems to bong inside my head, like there is nothing in there but empty space.

I notice a lot of folks on the e-mail group are reporting muscle spasms since taking Mirapex. Have you found this to be so?

Three days ago I decided to get off Mirapex and go back on Parlodel, which I used but it didn't work too well. Since then my RLS has driven me crazy, day and night. Nothing seems to stop it. The muscle spasms seems to have subsided quite a bit since I stopped Mirapex.

Just 7 days ago I started on Levoxyl for hypothyroidism (I was found to have Hashimoto's thyroiditis) and I'm wondering if this can exacerbate the RLS symptoms, or whether it and the various RLS medications don't mix. At the moment I'm taking one 10 mg Ambien and two 50 mg Ultram at bedtime, and take the Parlodel at each meal. But nothing is working. I'm not sleeping. The RLS is crazy.

Any suggestions?
Thanks so much.

Lynne G. (81),
Scottsdale, AZ

Medical Reply

It certainly could be that the Mirapex is causing side effects. Very few RLS sufferers have actually noted muscle spasms from Mirapex, but they certainly can happen. It is quite likely that your thyroid problem could be causing the muscle spasms and they may improve with treatment. There is no interaction between your thyroid medication and Mirapex.

You may want to try Mirapex again (especially when your thyroid is back to normal). If you have trouble again then consider Requip or Permax.


Sent: Friday, January 05, 2001 4:37 PM
Subject: Restless Leg Syndrome symptoms?

I am 63 and have had the symptoms of RLS since I was 30 something. It is wonderful to hear of other folks search for assurance. For years I found nothing but dismissal in the medical community.

This past year my symptoms increased dramatically. When I reached the point of sleeping from 3 - 5 hours (at best) per night, my physician took all this rather seriously (at last) and sent me to a neurologist. I have been on Neurontin for 2 months and have been sleeping soundly AFTER I get to sleep. Sleep duration is still short (5 - 6 hours) and getting to sleep is still a problem (In bed at 11:30 p.m. - asleep by 2:30 a.m.). I am losing ...rewrite: I have lost any hope of a normal social life, of going on trips by car, of working out of town, and of flying, of staying with friends overnight, all the stuff that was a such joy to me.

In addition to crawly legs, my arms, shoulders and face are joining in the fun. My skin has in the past few months become a problem. At the time of RLS symptom onset in the evening, the skin on my lower legs and thighs becomes excruciatingly hypersensitive. It is impossible to tolerate the touch of my own legs against one another. The touch of fabric, running water, massage on my legs is beyond my ability to tolerate. I leap from the chair and begin my nightly striptease. And it is no tease, it is deadly serious.

My upper arms and shoulders feel the way my legs do on particularly bad nights. My face occasionally joins in with an itching down the center from my scalp to my chin. This all sounds odd even as I write it, but my misery is not odd. It is wrecking what remains of my ability to hope.

Is there anyone out there who recognizes any of this, and who can tell me what to do to abate these symptoms?

Judy

Medical Reply

It is hard to know whether or not your skin symptoms are due to RLS, a side effect from Neurontin (you can figure this out by stopping the Neurontin for a week or two with the approval of your doctor) or due to some new skin problem.

Mirapex or Requip often work better than Neurontin and have fewer side effects. They can be taken alone or with Neurontin.


Sent: Sunday, January 07, 2001 9:04 AM
Subject: Can't use Tylenol #3 for Ultram drug holiday?

It's been over a year and a half since I last wrote you. At the time my neurologist, after having prescribed larger and larger doses of Sinemet (Sinemet C 5/200 three times a day), finally took me off that drug and prescribed Mirapex. Mirapex has worked miracles for my restless legs, but unfortunately the augmentation and rebound effect of Sinemet seems to have taken up permanent residency in my legs and gives me more grief than my restless legs used to give me.

I have been taking 4 mg of Ultram to control the horrible aching Sinemet left me with, and taking a two-day holiday every two weeks by replacing the Ultram with Tylenol #3. However, I'm getting to really dread the Tylenol #3 days because of the side effects (worst of which is a feeling in my stomach/abdomen that someone has just run into me with a battering ram). Is there a drug other than Tylenol #3 you could recommend for my Ultram holiday periods?

Thank you again for all the guidance you have given me in the past. Don't know what I'd do without you!

Rita B.

Medical Reply

You have some unusual side effects from Tylenol #3, but anything is possible. You may want to try Darvon, Darvocet, Talwin, or Vicodin. Get your doctor to prescribe a few of each at a time and see which you can tolerate. Let me know if you cannot tolerate any of these medications.


Sent: Sunday, January 07, 2001 6:01 PM
Subject: Pregnancy & RLS

I have never suffered from, nor even heard of RLS, but now that I'm pregnant, I'm becoming very familiar with this unbearable problem. I'm 6 and 1/2 months pregnant, and have been suffering with RLS and sciatic pain for nearly 3 months. It's worsening as my pregnancy progresses. It seems to progress throughout the day, culminating in the evening as I attempt to fall asleep. In the morning, however, I am RLS free.

I'm fearful of prescription or over-the-counter medicines. Is there any recognized safe remedy for my problem? Is this a common problem for pregnant women? Will it disappear after the baby is born? Am I likely to suffer RLS with each pregnancy?

Shannon L.

Medical Reply

The RLS should go away with the end of your pregnancy, but it will tend to get worse until you deliver. It is quite likely that it will come back with future pregnancies and it may come back in about 20-30 years when you are obviously not pregnant. There is nothing over the counter that will help your RLS in any dependable manner.

For more information and advice on available drugs check out our RLS Treatment Page.


Sent: Monday, January 08, 2001 5:43 AM
Subject: Do I have RLS?

My symptoms probably started at the age of 28 while pregnant. It felt like restlessness and some dull and continuous pain. It was considered then as due to dilated veins, even though one couldn't observe it . 18 years later, in a stressful period in my life, suddenly I had a constant urge to move my legs especially when I was sitting. The movements were like changing the position of my knees, putting the right leg over the left and vice versa. also moving one leg back and forth or in circular movements.

It was so disturbing that I couldn't work and instead went to sleep. Sleep came easy. Walking also helped. After a few months it passed, even though at a time of stress the was some tension in my legs,and fear that the symptom is coming back. Ten month ago I've started taking citalopram (Celexa) and  it helps me a lot. For the past few months I am feeling my legs again exclusively during the day.

Sitting during work is the most difficult. I have to move and change the position of my legs. I have no problem falling asleep, although I sleep less hours than I used to.   I also take a Thyroid supplement 75 mcg, and also has an history of slight anemia. Lately I've come across the problem of SSRI drugs and I'd like to know if there is a connection. Is what I'm describing sounds like RLS? What can be done about it?

Thanks in advance,
Raz

Medical Reply

It does sound as if you have RLS (I am about 95% sure from what you are describing). Citalopram (Celexa) is an SSRI which commonly make RLS worse.

If you need treatment, Mirapex would be a good choice. Check a serum ferritin level (which may very well be low considering your history of mild anemia), and if it is low, iron supplementation may help your RLS.


Sent: Monday, January 08, 2001 6:56 PM
Subject: RLS

I have been experiencing mild RLS on and off for about 10 years. The symptoms have not worsened, but have become more frequent. By "mild symptoms" I am referring to a tense or electrified sensation in my legs that want to be relieved by stretching or moving, mostly when I am falling asleep at night.

Is there something I can do about it now, to prevent it from getting worse. Not just ease the symptoms but actually prevent it from getting worse. It is not so bad at this time that I would think of seeing a doctor or starting medication...or should I?

Medical Reply

You should see a doctor and get your serum ferritin level checked. It would be a good idea to get a full lab panel and CBC also. You may find iron or other vitamin deficiencies which could be corrected to help your RLS.

Most RLS sufferers do not have any underlying medical conditions that can be corrected to help their RLS or prevent it from getting worse. It sound as if you should see your doctor and see about starting Mirapex or Requip.


Sent: Tuesday, January 09, 2001 11:06 AM
Subject: Requip causing pain in the bones

Further to previous correspondence, my mother-in-law has switched from carbamazepine (Tegretol) to Requip some three weeks ago. She feels much better generally, but we are still at the stage where the RLS 'throbbing' is severe but bearable. We started with 0.25mg morning and evening and gradually increased recently to 0.25 in the morning and 0.5mg midday and night.

My mother-in-law is convinced that the extra 0.25mg midday and night is giving here severe 'pains in the bones' so we have reverted back to 0.25mg three times a day.My question is whether this is just a coincidence and we should persevere with gradual increases until the throbbing is relieved, or whether there is a likelihood that Requip is causing the pains.

She has not had the higher dose for long enough to convince me that there is a definite correlation.

Many thanks and best regards,
Leslie D.

Medical Reply

It should be easy to figure out whether or not the Requip is causing "pain in the bones" which would be an unusual side effect for this drug. Just stay on the lower dose for about one week and see if the problems resolves. If it then returns with increasing the dose, then you can be sure the Requip is the culprit.

If Requip is a problem, try Mirapex instead.


Sent: Wednesday, January 10, 2001 9:13 AM
Subject: multi symptoms

I have RLS, or actually PLMD. I also have fibromyalgia, osteoarthritis and sleep apnea. What a conglomeration! I get so frustrated sometimes. I have tried many medications and am currently getting by with Klonopin 1 mg. It is not a cure-all. But I can fall asleep and stay in bed all night. I have daytime symptoms, but only jerk a little when I take a daily afternoon nap. This is essential to me as I am trying to run a business from home and care for my 88 year old mother who has osteoarthritis and has had a couple of mild strokes.

I am in my early 50's and was only diagnosed after my mother's first stroke. We are also uninsured at this time and Klonopin is relatively inexpensive. I notice you recommend Mirapex. I don't think I've ever tried that. I have tried so many things. Finally got tired of the side effects and weaned myself off pain killers and anti-depressants but must have something for the jerking.

I have been on guaifenesin for 3 months(for fibromyalgia) and also take estrogen. Have thought about herbal remedies for stress and lack of energy. I have been looking into Adaptogen product called Prime One. However, am concerned about interaction with anything I'm already taking.

Thank you for you time and any suggestions,
Charlotte

Medical Reply

Klonopin works for some RLS patients, but it is often responsible for daytime sleepiness and can be addictive. Mirapex is much better in that it is not addictive and works better for both PLMD and RLS. It can be taken during the daytime also, if necessary. It is however, more expensive than Klonopin, so that may be a significant factor for you. With Mirapex, you should not need Klonopin.


Sent: Wednesday, January 10, 2001 10:41 AM
Subject: PLEASE HELP

I'm a 37 year old male that has had RLS for as long as I can remember. For the most part it hasn't kept me awake, but occasionally I do get "restless" or that "crawly feeling" mostly in my ankles and occasionally in my wrists when I'm awake. It seems to be worse if I'm tired. The problem is that I recently got married and the RLS keeps my wife awake at night.

At first she just suffered and went without sleep, but that soon caught up with her. Then when I would wake her with my "kicking" she would move to the floor to try and get some rest, but some nights I guess I get so active that I would still wake her up. Now it has come to us sleeping in separate rooms, and is putting a strain on our marriage.

Any help you can give will be greatly appreciated.

Medical Reply

The leg jerking problem at night is called PLMD and occurs in about 85% of RLS patients. The simplest and safest cure for this problem that bothers your wife is to get twin beds that you separate by a few inches just at bedtime.

Medications such as Mirapex or Requip may eliminate the problem and help decrease your RLS symptoms.

I do not know any RLS specialists in your area, but check with your local RLS support group (find one at the RLS Foundation )


Sent: Thursday, January 11, 2001 11:53 AM
Subject: Can kicking at night cause personality changes?

I have been researching he Restless Legs Syndrome and have an appointment for my husband with a doctor. I would like to know more about this and wonder if this is what my 71 year old husband has. He sometimes scares me as he is kicking so hard and kicks me in his sleep. He is always running or kicking a dog who is after him in his dreams.

He had told our doctor that he wasn't sleeping good but the doctor just gave him some light sleeping pills which he doesn't take much. I notice it can be a lack of iron or b-12 vitamins. Can you take a blood test for this? I made an appointment with a doctor for him on the 17th but want to know what to expect. He is just not the same personality he use to be unless he is putting on for someone but most of the time seems rather glum and that is not like him.

Thank you,
Joyce H.

Medical Reply

The problem that your husband may have is PLMD, not RLS. He may need a sleep study to determine if he really does have PLMD, but this is only worthwhile if the PLMD bother him, that is resulting in poor sleep which may cause an increase in daytime fatigue/sleepiness. It could be that his change in personality may be caused by this PLMD problem.


Sent: Thursday, January 11, 2001 12:53 PM
Subject: How to swap Requip for Mirapex?

I requested from my doctor permission to try Requip as a vacation from Mirapex and he has approved it but had this question which was not covered in the material I took him.

Do I take myself off Mirapex "cold turkey" when I start Requip or do I transition slowly? Also, the same question in reverse.

Thank you,
Janis

Medical Reply

There is generally no need to take a vacation or drug holiday from Mirapex. In a very few cases, some tolerance may occur to Mirapex, in which case changing to Permax or Requip may be of benefit. But, this is an uncommon situation.

Requip can be substituted immediately ("cold turkey") for Mirapex, with .25 mg of Requip substituting for .125 mg of Mirapex.


Sent: Thursday, January 11, 2001 5:10 PM
Subject: Is Vasotec making RLS worse?

I have had RLS since 1973, when I was run over and suffered a fractured femur and shattered pelvis. Up until now, I've had pretty good control using folic acid during the day, although I've been through two sleep studies and found that the leg movement brings me out of REM sleep to Stage 1 sleep numerous times a night.

However, I've recently begun treatment for hypertension with Vasotec. That seemed to increase the RLS somewhat. Then, a month ago, I received enalapril, as a generic substitute for Vasotec. Now the RLS is a daily occurrence and virtually uncontrollable. It seems to happen most when I'm driving or sitting at a computer. Standing up and putting weight on the leg, exercising it, and massage are ineffective.

Have you received any feedback concerning the possibility of a drug or its inactive ingredients worsening RLS? I also take Prilosec daily, and Bumex (1 mg) every other day.

Thanks,
S. Russo

Medical Reply

There is no known relationship with Vasotec, or its class of ACE inhibitor type of blood pressure pills. I have never seen this problem nor have I heard of it. I cannot say for sure that the Vasotec is not causing worsening of your RLS, but I am somewhat skeptical about it being the culprit. The only way to be sure would be to have your doctor change to another type of blood pressure pill that is not an ACE inhibitor.

RLS does worsen with age, often in fits and starts, so it may seem to be related to something else that you have done. When it does worsen, it occurs when you are at rest, such as driving or sitting at your computer.

Prilosec and Bumex have also not been implicated to exacerbate RLS.


Sent: Friday, January 12, 2001 1:25 PM
Subject: Mirapex and Vicodin interaction?

I was diagnosed with RLS/PLMD 4 years ago. For about 2 and 1/2 years I have taken Mirapex twice a day (0.25 mg each dose). The first pill is at 1 p.m. and the second just before I go to bed. I also take 5 mg of Ambien at bedtime. I have taken the Ambien for about a year and a half. For the most part it seems to have my RLS and PLMD, which had become quite severe, under control.

My question is about the relationship between Vicodin and Mirapex. I was given Vicodin (5/500) yesterday to be taken at bedtime because I am having bad back spasms at night. I was to take one Vicodin along with one Zanaflex (4 mg). I was concerned about the Vicodin so actually cut the tablet in half and took only half. The reaction was frightening: shortness of breath, rapid heartbeat, hallucinations. It went on for hours.

Is there any relationship between Mirapex and Vicodin or is this strictly a Vicodin reaction, do you think? Of course, I reported this to my orthopedist this morning and was told to take only the Zanaflex tonight. My orthopedist, while showing great interest in what I told him about RLS, thought there would be no problem with an interaction between Mirapex and what he was prescribing. I told him my first priority was to "protect" the Mirapex and Ambien because RLS is by far my biggest concern.

I would appreciate anything you can tell me about this.

Thank you,
Patricia L.

Medical Reply

There is no known interaction between Vicodin and Mirapex. In fact, for many of my severe RLS patients, this is a common combination of medications that are taken at the same time. Your reaction is likely due to Vicodin alone.

Other narcotics (Darvon, codeine, Talwin, etc.) may or may not reproduce the same reaction, but often this is due to just the one narcotic (in your case, the Vicodin) so you may be able to take other narcotics. If you are concerned about trying other narcotics (which may be very understandable given your reaction to Vicodin), then Ultram, a non-narcotic pain reliever may be a good choice (this often helps RLS a lot also).


Sent: Saturday, January 13, 2001 3:36 PM
Subject: Bi-polar disorder and RLS?

I found your site by searching my symptoms, Bi-polar disorder ,sleeplessness, muscle twitching. My legs have so much electricity in them I can't stay still at night or sleep. I lost my job as a commercial diver because the medications of Wellbutrin and Depakote disqualified me during the annual physical exam.

I stopped taking the medications under my physicians direction and we are searching for alternative ways to combat these symptoms. Cod liver oil, Multivitamins and tryptophan help stabilize my moods and give me energy however sleeplessness and electricity in my legs have become a bigger problem. working overtime hours is becoming a real challenge to stay rested.

Any ideas?
D.T.

Medical Reply

You may have RLS. If you get the problem only when at rest and if you have an urge to move your legs when you get this electricity, and the movement helps relieve the electricity (at least temporarily), then RLS is likely.

A Reply from D.T.

Sent: Saturday, January 13, 2001 11:39 PM
Subject:  Bi-polar disorder and RLS?

Thank you for your prompt reply. Moving my feet or getting up and working my legs by rocking in a chair are the only ways to stop the electricity. Is this part of my bi-polar disorder or is it separate? Is there a so called 'natural' remedy that will pass a blood test and not indicate a medical condition so I can get back into my chosen career?

My wife divorced me because of the bi-polar and was angry at my feet and leg movement. I don't suppose you have advice I can give her to try and redeem my marriage do you? Could this have happened from a fall I had at work about 7 years ago?

D.T.

Medical Reply

It does sound as if you have RLS. This condition has nothing to do with your bi-polar disorder, except that once you have it, some (or all) of the antidepression medications may make it worse. RLS is a common medical disorder (5-8% of the population) but is often not diagnosed or treated by most doctors.

There is nothing that helps the majority of RLS sufferers that is natural or over the counter. There are however, lots of very good medications that can alleviate the symptoms of this disorder. You might be able to get some empathy for your condition by showing her literature about RLS (from this website or from the RLS Foundation ).

Trauma to the body, such as with your fall 7 years ago, can trigger RLS.


Sent: Monday, January 15, 2001 10:04 AM
Subject: What about Eastern Medical Procedures??

I'm sure I have RLS. My father has had it ever since I can remember. I began getting symptoms in my 20s, then found it starting to affect my sleep in my 30s. At that time, yoga seemed to take care of it rather quickly. I found months could go by without any symptoms since that time.

But, recently, at 50, I had shoulder surgery and since coming off the initial pain killers for that procedure, I have not had a good night's sleep. Stretching doesn't work any longer. I'm in misery. I walk around during the night like a zombie, while everyone else in my house sleeps peacefully.

I happen to be on vacation right now and don't know what I'm going to do when I have to go back. I began seeing a Chinese medical practitioner (acupuncture and herbs) just over a year ago for some chronic breathing difficulties I was having, when Western medicine proved redundant and dangerous. I had great success with that. However that practitioner has moved out of state.

Do you know of anyone who has had success with Chinese herbs and acupuncture?

John C.

Medical Reply

Some RLS sufferers have had success with acupuncture and various natural remedies including herbs. The problem is that this is a very small minority of RLS patients. Most who reach your stage need medication such as Mirapex or Requip.


Sent: Monday, January 15, 2001 1:51 PM
Subject: RLS or OCD?

I've had a problem ever since I can remember with the compulsion to move my feet when I'm still (especially in bed, but also when sitting). It keeps me awake at night. The compulsion stems from a feeling like my feet are hot or swollen.

I've assumed in the past that this was some form of RLS, but didn't know what to do about it and felt silly discussing it. However a few years ago I hit a major depression and started on a round of antidepressants; first Prozac, then Manerex (moclobemide) and finally desipramine. The first two drugs exacerbated the foot condition so much I would wake up with totally cramped calves; this was the reason I finally moved to desipramine, which didn't seem to have the same effect.

Cut to 5 years later... I fell into another depressive hole but this time I've been diagnosed with obsessive compulsive disorder (my brother also has it and I fit the diagnostic criteria; it seems last time I didn't get good psych advice). I started out on Effexor (for depression, not OCD) and the foot problem has started up again. Next week I'm being switched to Clomipramine, the "gold standard" for OCD.

Thus far, then, my theory has been that the SSRI antidepressants (Prozac, etc and the "hybrid" Effexor) exacerbate the foot condition, which tricyclics like desipramine (and hopefully Clomipramine) don't. But here's my question.. what if the foot movement is actually a symptom of OCD and not RLS at all? How do I tell?

My other question is about leg pains. I've had for many years acute pains in my legs between knee and thigh at night. Painkillers do help. It's more noticeable when I've been working at computers during the day. Is this just a case of bad ergonomics (I've tried different chairs and desks, though, and the problem has been with me for at least 15 years!) or is it another RLS symptom? And is it RLS if painkillers take away the aching?

Thanks for your time,
Helen B.

Medical Reply

It does sound as if you have RLS, but sometimes it can be difficult to tell for sure. SSRI medications often worsen RLS. Tricyclics are generally worse than SSRI's, but some RLS sufferers get relief form the tricyclics while exacerbating with the SSRI's. It can get quite confusing.

Trying a drug like Mirapex might be helpful to see if you respond, which would help confirm the diagnosis of RLS (but would not definitely rule it out if you did not get better). This might be a better choice of therapy if it works for your compulsion to move your legs when at rest.

The leg pain might be RLS. Painkillers non-specifically help RLS discomfort or any other type of pain, so it is hard to understand why they do not help your nighttime leg pain. Again, if the pain is due to RLS, then Mirapex or Requip may be quite helpful to alleviate the problem.


Sent: Tuesday, January 16, 2001 1:53 AM Subject: RLS and doctors

I have some questions regarding the wide spread lack of understanding from doctors about RLS. This issue is so bothersome to our members. I would appreciate your input on the following questions:

1. To your knowledge, is Restless Legs Syndrome covered at all in medical school?
2. If so, is it given a quick brush?
3. Since such a large percentage of our population suffer from RLS, what in your opinion will turn this "doctor awareness" around.?
4. Could the RLS Foundation target medical schools and influence the "curriculum" for lack of a better word, regarding the crucial need for this syndrome's coverage?
5. What is the most effective way to find a knowledgeable RLS doctor?
6. What is the reference that a doctor looks at to find a treatment?
7. Why do the textbooks still list Sinemet or Klonopin as a (first?) recommendation for this disorder?
8. Who can influence the changes there to update the latest treatments?
9. Might there ever be an RLS specialist in the medical field?

Barbara A.

Medical Reply

Here are the answer to your questions:

1) + 2) RLS is taught in medical school, but minimal time is spent on this disorder. On average, most medical schools will spend about 1-2 hours on sleep disorders. They must cover sleep apnea, narcolepsy, insomnia, RLS, and everything else about sleep in 1-2 lectures. This is of course impossible so the greater emphasis and time goes to sleep apnea (15% of men over the age of 45) and narcolepsy (.01-.1% of the population, but a very interesting disease). RLS/PLMD (5-8% of the population) may get a few minutes out of the total medical school curriculum.

3) To improve awareness the RLS Foundation is working hard with pamphlets for primary care doctors, education, etc., but it will probably need a celebrity (such as Michael J. Fox for Parkinson's disease) to really make this well known and taken more seriously.

4) The RLS Foundation has tried, but every disease has proponents pushing for more time in medical school lectures and it is very, very, hard to influence the medical school educators and change the built up inertia of the current curriculum.

5) The most effective way to find a doctor knowledgeable in treating RLS is to check with the local support group. They usually have found a few local physicians who are "RLS friendly". Sometimes the RLS Foundation will be able to make a recommendation.

6) Most doctors will look at a general textbook of medicine, such as "Harrison's Principles of Internal Medicine" for treatment of diseases like RLS that they are not current enough to treat.

7) Most medical textbooks are about 5 years out of date by the time they are printed. It takes a long time to compile the data, edit it and get it in print. Many sleep specialists (who use the textbook "Principles and Practices of Sleep Medicine") still believe that Klonopin and Sinemet are the drugs of choice for RLS. It will likely be 5-8 years before the textbooks correct this error and many sleep and RLS specialists still like to use Klonopin (unlike me).

8) The RLS Foundation is the best source for influence that we have for now. Hopefully, they will find a celebrity spokesperson to help publicize this disorder.

9) There are already RLS specialists in medicine. Many of them are on the Medical Advisory Board or Scientific Advisory Board of the RLS Foundation. They are doing basic RLS research and trying to get others to participate.


Sent: Thursday, January 18, 2001 9:42 AM
Subject: Restless Legs and Cancer Treatment

My husband is about to go crazy with restless leg syndrome. He hasn't slept for days because he is unable to keep his legs still. He tries to sleep sitting in a chair, but that doesn't help. He is being treated for lung cancer and started taking Oxycontin for pain relief this past summer and had no problem with RLS until his pain medication was changed to a Duragesic patch. Could this be why his legs have started jumping again?

Please help.

Thanks,
Mary F.

Medical Reply

It is hard to know why his RLS is worse with the change in potent narcotics. The best plan would be to start Mirapex or Requip, which in addition to the narcotics should relieve his RLS problems.


Sent: Saturday, January 20, 2001 10:21 AM
Subject: RLS & Thyroid medication

I was wondering since I could not find the answer to my question, if you could tell me if taking thyroid pills for a long time will affect restless leg syndrome?

Thank-you,
Irene G.

Medical Reply

Thyroid pills, if given if the correct dose, should replace the natural thyroid hormone that the body normally produces. If your thyroid blood levels are within normal limits (this is a very easy test for your doctor to check) then there is no way that your body can tell whether the thyroid hormone comes from your pills or form its own thyroid gland.

Therefor, if you are on the right dose of thyroid, your RLS or any other medical problems should not be affected by your thyroid pills no matter how long you take them.


Sent: Monday, January 22, 2001 4:19 AM
Subject: Thank you for indentifying "The Tingles"

I have had these many of the described tingly and unbearable need to shake my legs for as long as I can remember. I am a 26 year old male and have always been athletic and heavily involved in sports. At times as a young child I would kick and actually do the "bicycle" (laying on back, holding hips up with hands and simulate riding a bike on the ceiling" this and free squats, running up stairs, and at times torturing myself thinking it is in my head and if I stay still under the covers MENTALLY I can make it stop. WRONG. I hate this and I feel like hitting anything FRUSTRATING aaaaaaaaaah. I know you feel this!

I do not suffer from involuntary twitching I know that I must kick to help the tingle. It is not the pain it is this DAMN tingle, behind knees, like in the center. I have noticed with days of a lot of activity and those of just laying around. I wish I knew the trigger. Reading this early 4 am after suffering I was provoked with more of this RLS crap just reading other descriptions of how others felt on this site. Almost unbearable I had to shake and get rid of the tingle.

Now my parent's as I was younger had mentioned growing pains as another poster at the site had also mentioned. And another clear moment was in the hospital with a Plurovac connected to my lung (clear fluid etc) after a car accident collapsed lung I had to walk and could not sit still. That was in 92' and a nurse at the hospital after describing her the agony not pain I was experiencing for so long and at the time she had mentioned she had heard of the same problem! OH my what a relief I thought I was crazy, I mean what a weird problem to describe to someone w/o the affliction.

I do not want to take anything (pills etc.) unless it increases more. Usually if I 'punish' my legs for tingling with the squats etc. , and it is not one of the bad nights I will fall asleep. I was horrified to hear of the other poster's advanced problems and I feel so BAD. Suicide and risk of losing a spouse, girlfriend etc. bothers the hell out of me. I can relate, and this bothers me also.

I also had my girlfriend confused as hell when explaining this problem and she would ask how can I help in the early AM. I would lay on my stomach with her on top of me, she would massage the back of my knees with her thumbs trying to reach the tingle's and this would work sometimes. Well I am single now and I am self sufficient and am back to punishing my knees.

As a basketball player with a complete ACL rebuild and family history of arthritis and early affecting Alzheimer's young 50's plus alcoholism I'm 26 / 6'4 / 215lbs and I am scared of what lies ahead in the future. Let me reiterate that I am thankful to find that I am not the only one afflicted and to also know there are alternative treatments then punishing your legs. Now I have a name for the 'TINGLES' (RLS), my childhood enemy has a name but not a face as I would love to confront him and unleash my rage.

Thank you,
Jason

Medical Reply

You do not have to suffer with RLS. There are many good treatments that are generally well tolerated and can help you live a normal life.


Sent: Monday, January 22, 2001 9:56 AM
Subject: Mirapex and vision problems

I have been on Mirapex for two months now, with increasing dosage for RLS. Now suddenly, without any other risk factors, I have bleeding behind my retina, with decreased arterial blood flow to the same eye. Could this be a side effect of the Mirapex, or something with RLS? I had a complete visual exam done 3 weeks before the problem began.

Thanks,
Barb M.

Medical Reply

As far as I know, retinal hemorrhage has not been reported with Mirapex.


Sent: Monday, January 22, 2001 9:58 PM
Subject: RLS in arms

I'm a 41 yr. old man. Eight months ago my only problem was migraines. On July 12th I hurt my back at work. The next day I took my 3 kids to the bank where we we're unfortunately caught in a take over style robbery. I've experienced bad situations before but this was the first time w/my kids. So it was very traumatic. From the night after the bank robbery till now, I have been plagued with anxiety and restless leg syndrome (though in my arms).

I'd like to hear from anyone who has RLS in their arms. I'd like to know if anyone has gotten RLS after a back injury or a traumatic experience. My neurologist prescribed Buspar...has anyone tried it for RLS? I'd like to know if others have started having anxiety problems after having RLS.

I feel like the RLS is driving me crazy and quickly sending me into a depression. I'd greatly appreciate any responses. My prayers go to all with RLS and to their families because they suffer so much with us and give us the support we need to go on. Take care.

Tommy K

Medical Reply

It is common for RLS to start or worsen after trauma, especially to the back. RLS usually starts in the legs then may progress to the arms or other parts of the body. Some RLS sufferers only experience RLS in their arms. RLS causes anxiety to some degree in most patients who have it.

Buspar may help anxiety, but is not a treatment for RLS. Mirapex is a much better choice to treat the RLS.


Sent: Tuesday, January 23, 2001 6:17 PM
Subject: Vicodin and Requip for RLS?

I've had RLS now for years and finally two years ago went to a sleep spec.then a neurologist who now has me on Requip 0.25 (2 before bedtime) and I also took Vicodin for back problems. Now after a year I seem to have it pretty much under control except in the evening. I take Vicodin 5/500 mg 3 times a day and sometimes 1 around 4am.

I feel nervous taking the Vicodin and wonder if I'm doing the right thing. I've been on it for over a year and now feel so much better with the back and the RLS. I hate to give it up but some of my doctors keep telling me how bad it is,but then they don't have my problem. I'm going on 72yrs of age and do feel better. What do you think, anyone on Vicodin with Requip?

Thank you,
Dorothy

Medical Reply

Vicodin and Requip (or Mirapex which is very similar) is a very common combination for RLS patients. The goal is to increase the Requip to a level that resolves most of the RLS so that only a little Vicodin is needed.

The concern with Vicodin (or any other narcotic) is that with continual high doses tolerance may occur. If you get tolerant to a narcotic, then higher and higher doses are needed until the narcotics barely work. You are already a fairly high dose of medication, so tolerance and addiction are real concerns. We cannot tell who develops tolerance and who will not, so you may do well for years (or even forever) on your current dose, or possibly have trouble in the near future.

You do not say whether you use the Vicodin more for your back pain or more for your RLS. If RLS is the problem, then increase the Requip (with your doctors guidance) until you need less Vicodin (even if this is only in the evening/night it will be helpful). Anti-inflammatory drugs may be helpful to reduce the need for Vicodin for your back pain.

If you cannot reduce your Vicodin dose, then another strategy is to alternate with Ultram, a non-narcotic pain killer that often works as well as the narcotics.


Sent: Tuesday, January 23, 2001 6:59 PM
Subject: RLS & depression

I, like myriad's of others, have tried to make sense of the restless legs syndrome. It seems to me that the majority of people whom I have met with this disorder are type A personalities who are constantly striving to do better. Lately, I ran into a reference to an article on the use of SSRI's with this syndrome.

Is there a definite correlation (the article stated that the syndrome is a poorly understood form of depression)? Do SSRI's help? And if so, which one?

RNB,
Toronto

Medical Reply

There is no known correlation between personality type and RLS. There are many RLS sufferers without type A personalities. SSRI medications make RLS worse more often than they help RLS.


Sent: Wednesday, January 24, 2001 6:32 PM
Subject: Are PLMD without arousals a problem?

I have just completed a sleep study and have been diagnosed with moderate sleep apnea. CPAP is the treatment. During this study the were also severe periodic limb movements (65/hour) even in the follow up study with the CPAP eliminating the apneas. Few led to arousals. I don't seem to have the RLS symptoms of crawly things excetera. I have been a restless sleeper as long as I can remember.

Also at my latest physical my new doctor tested for feeling in my feet. This did not go well and I was sent to a neuorologist. I was tested with electricity and found to have a loss of nerves and feeling in my feet. My blood work was perfect. My wife has Fibromyalgia. I don't know of any family members complaining of the restless legs or kicking while asleep.

My questions are should I be concerned with the PLMD? Could the nerve damage be related?

Tod P.

Medical Reply

PLMD is only a problem if it causes arousals. Otherwise, it is only a medical curiosity (or a bother to the spouse that may be getting kicked) and you should not be concerned about it.


Sent: Thursday, January 25, 2001 3:53 PM Subject: RLS

Brief summary of history:

My mother in law has been diagnosed with RLS. Originally she was on Carbamazepine (400mg/day) and Temazepam (20mg at night)

She is still taking the Temazepam but has replaced the Carbamazepine with Requip.

The Requip dosage has been steadily increased over the last 4-5 weeks from 2 x 0.25 mg to currently 3 x 0.75 mg.

While my mother in law has greatly benefited from going off sedative effect of Carbamazepine, the RLS symptoms have remained and even become more severe. There have been days where the symptoms have disappeared, but they have always returned. As the dosage has increased the severity of the recurrence also seems to be worse. During the last few days I have heard the complaint 'it is an effort to walk'. Exact clinical measurements are a bit difficult as we only communicate over the phone.

My question is whether we should continue with Requip and the gradual increase in dose, or try and switch to Mirapex? If the switch is indicated, then how do we handle the transition?

Finally, I had in mind to eventually change the Temazepam for Ambien or Xanax but did not want to make two changes at once. however, sleep at night is generally interrupted at between 2am and 4am. I wonder if we should leave it for the moment, or try a change.

Many thanks for your help, Leslie D.

Medical Reply

Most RLS patients need between 2-6 of the Requip .25 mg tablets per day. Your mother-in-law is taking the equivalent of 9 tablets per day. Most RLS patients would get at least some benefit from this dose, especially in the first few weeks of therapy. Either RLS is the incorrect diagnosis or Requip is unlikely to be of benefit in her case.

Restoril (temazepam) may be a reasonable choice for awakenings at 2-4 am as it has a slow onset but long duration. If she does not have daytime sleepiness, then changing to Ambien or Xanax may not have much benefit. Regular drug holidays may be helpful to avoid tolerance/addiction.


Sent: Thursday, January 25, 2001 8:29 PM
Subject: Afternoon RLS

I'm new to these sites. RLS is genetic in our family. My father walked the floor at night until 5 A.M. the last 20 years of his life. Then he died of a tumor in his lower spine?? I'm wondering if it was related? And no doctor would give him any pain medications for the RLS. We didn't know what it was. After he died I started researching.

My symptoms used to occur only at bedtime. Now they start if I try to lie down to rest in the afternoon. I had a headache today and could not lay down. I was MISERABLE. My doctor gives me OxyContin for nighttime RLS but I don't want to take something like that in the afternoon. What can I do?

And the RLS is no longer just in my legs. It seems to be worse in my arms and shoulders.  And thank you! I have been reading your website for hours!!

Barb

Medical Reply

The tumor in your father's spine should have nothing to do with his RLS. Although pain medications like OxyContin are helpful for RLS, treatment with Mirapex or Requip are much better with no risk of addiction. Most doctors are not very familiar with the correct treatment of RLS and know very little about using Mirapex or Requip for this disease (or for Parkinson's disease which is the official indication for this class of drug).


Sent: Monday, January 29, 2001 6:46 PM
Subject: Requip

I would like to know how effective Requip has been compared to Mirapex. Some of the people in my support group find a couple of side effects troublesome; lack of sleep, dry mouth, and weight gain with Mirapex.. No one in our group is currently taking Requip, but it is time for me to find out more about it. I would appreciate an answer.

Thank you,
Neva

Medical Reply

Requip works generally as well as Mirapex and both act on similar D2 dopamine receptors. Some prefer one drug over the other due to problem with side effects or due to potency for RLS symptoms. This can vary quite a lot from individual to individual. Most will find them equally effective (with the lowest strength Mirapex tablet of .125 mg being equal in effect to the lowest strength Requip tablet of .25 mg) with mildly different side effect profiles.


Sent: Thursday, February 01, 2001 11:44 AM
Subject: RLS

I'm glad to know others have this disorder as I do! I'm a 36 year old female and have had this since I can remember. Family members describe this as "itchy legs" and we all go out and exercise to "get rid of it." I must have a mild form because my cure is at least 30 minutes of good jogging a day. If I do that, I am okay. If I don't do that, I am up all night at different points having to do deep knee bends.

This was all worse after DELIVERY of my second baby. The day after delivery, even when I was physically exhausted, I felt the extreme urge to go run some miles! I couldn't believe after all that I felt the need to go running.

I feel my RLS is partially an iron problem, as my blood count that day showed I was low on iron.  I was glad to have had this problem in the hospital. I have tried iron supplements since but no effect.  I need to get another blood count done to see how much iron I need to add and that may help. Till then I will keep running. I hope this doesn't get worse as I age because I can't run more than I am!

Medical Reply

Most females with RLS get worsening during the latter half of their pregnancy, with relief after delivery, so your case is somewhat unusual. Exercise such as running, knee bends and stretching often helps RLS. Low iron is associated with worsening RLS, but treating with iron does not always improve the RLS problems.

Unfortunately, RLS does generally get worse as you get older. There are however, a lot of good medications that can treat RLS as it worsens.


Sent: Friday, February 02, 2001 6:52 AM
Subject: Buspar and RLS?

I suffer from RLS.  I take Desyrel (trazadone) for depression, Sinemet for RLS and recently began taking Buspar for anxiety. When I began taking Buspar and quit taking Ambien my  RLS attacks become nightly events. While I took Ambien for about 4 months, I had very few attacks.

Are these more frequent attacks triggered by the Buspar or the lack of Ambien? Also, I have been taking Sinemet for years. Should I be taking a drug holiday and, if so, what would be a recommended substitute? If the Ambien was indeed helping the RLS will the benefit eventually disappear?

Thank you for any information you can share with me,
Allan S.

Medical Reply

Since you take several medications, it may be difficult to sort out which is causing problems. Buspar may help or worsen RLS, so the only way to tell would be to stop then restart the drug (while leaving everything the same) and see what happens. If your RLS is only at bedtime, then stopping Ambien would prevent you from falling asleep right away and make your RLS more apparent (but not necessarily be the cause of worsening RLS).

Sinemet is a drug that we do not use much these days for RLS. In doses of greater than 2 of the 25/100 tablets there is a very significant chance of developing augmentation or rebound. Mirapex or Requip work much better and do not cause these problems.


Sent: Monday, February 05, 2001 2:54 AM
Subject: Control of RLS and reality checks

I remember reading once here (a couple of years ago so I may be mixed up) that one should try to control his RLS at a 90% relief level. That the goal wasn't the total eradication of the symptoms, but control without taking the risk of overusing the drugs. At least that's how I interpreted the comment. Did I actually read it here and if I did, do you still follow that treatment advice? If so, is it to help delay or even prevent tolerance of the drugs used or to prevent possible damage the drug might cause? And finally, if that last 10% can't just be ignored, what would you suggest to deal with it?

I've heard vicious rumors that taking Sinemet, Mirapex, and such can actually damage our own dopamine producers making us reliant on drugs the rest of our lives. Any truth to that?

If the above turns out not to be your advice, how would you judge it? Is it a good rule of thumb to follow or is it better to completely subdue the RLS if possible even at the risk of overmedicating? If one drug took care of 90%, and another drug would take care of the last problems would that help the most and slow possible progression or should that second drug be saved for use when the first drug failed.

Your comments will help me decide what action I will take in a certain dilemma I'm facing right now with doctors and such. I need to know how hard I should be pushing for some things and resisting others. I don't want to be a guinea pig but if I have to be I want to be able to squeak loudly.

Thank you for your comments,
Cris

Medical Reply

The comment about controlling about 90% of RLS symptoms was written on this site, but it was in reference to treatment with NARCOTICS only for RLS. This does not apply to the Parkinson's disease class of medication (Mirapex, Requip, etc.). Narcotics do take care of RLS symptoms very well, but they also make people feel "good" from their opium like effects. It is not unusual for patients to overshoot when dosing opiates as they want to avoid the pain or symptoms that they are taking the medication for and sometimes to reproduce the other "good" feelings.

This overshooting very often results in addiction and tolerance to the narcotic and then it barely works at even high doses. When narcotics are taken at the correct dose, this addiction/tolerance seems to happen rarely. To avoid overshooting, treating until most of the symptoms are gone (I used 90% as an example, but I really meant until a very minimal amount of RLS is still noticeable, but not bothersome at all and can be ignored) is a very good idea.

Dopamine drugs such as Mirapex, Requip and Permax do not damage any dopamine systems in the body and one does not become reliant on them. I take people on and off these drugs all the time. Sinemet is a problem with RLS sufferers as it can cause augmentation and rebound, but the mechanisms of these problems are not understood.


Sent: Saturday, February 10, 2001 4:09 AM
Subject: Concerns about Mirapex

I have tried Neurontin for RLS with little luck. I am concerned about taking Mirapex since I've read about possible hallucinations, insomnia, and falling asleep suddenly. At what dose do these side effects occur usually? I don't need any of these side effects.

Thanks,
Karen U.

Medical Reply

Although Neurontin is a good drug for RLS for many patients, Mirapex in my experience is a much better drug. At the doses used for RLS, I have yet to see any problems with hallucinations. I have has a few cases of insomnia (and I prescribe a lot of Mirapex) but then all that has to be done is not use the drug any more.

The big concern is about daytime sleepiness which could cause problems while driving or other activities. This has generally been reported at doses above 1.5 mg (12 of the .125 mg pills per day) and most RLS sufferers need between 2-6 of the .125 mg tablets per day. It has been reported at lower doses also, but this is a more uncommon problem.

A Reply from Karen U.

Sent: Sunday, February 11, 2001 9:57 AM
Subject: Combinations for RLS?

Is it O.K. to take Mirapex AND Neurontin together, and at what dosages? What is the "upper limit" for Mirapex?  If they are being combined, what is the suggested dose of each and, what time of the day or evening should they be taken???

Thank you so much,
Karen U.

Medical Reply

It is alright to take Mirapex and Neurontin, but the doses have nothing to do with taking them together, but rather depend on the response to the individual drugs. Most RLS sufferers need only Mirapex so it does not come up often about combining the two drugs.

Mirapex can be taken up to 3 times per day, generally 30-60 minutes before RLS symptoms occur. Most RLS sufferers have only bedtime problems, so only need it once before bed. Neurontin is much the same. It can also be taken up to 3 times per day.

There are no "official" limits for the dosing of Mirapex. Most RLS sufferers need between 2-6 of the .125 mg tablets per day (compared to the equivalent of 24 per day for Parkinson's disease patients). Neurontin is used in relatively higher doses, up to 2400 to 3600 mg per day.


Sent: Saturday, February 10, 2001 7:33 AM
Subject: Restless Leg Syndrome

I just want to pass on to others my experience with this syndrome. After having suffered for 25 years and not being able to go to a movie in the evening or being very uncomfortable during flights, I finally contacted a sleep specialist doctor. He put me on Mirapex and I haven't had one day of discomfort since.

To me this is a miracle. I now can go and do what I want, when I want. I would urge everyone to seek this medication. I have had no side effects except that my restless legs are now calm.

Carol M.,
Richland WA


Sent: Sunday, February 11, 2001 12:12 AM
Subject: RLS

I just found your site and I'm so relieved! This is ME! I have had this all my life and now I'm just beginning to understand that it's a true condition. I have done everything from excessive exercise to no exercise, taking baths, doing stretching and yoga, changing my shoes, massage etc. I've tried so much to try and make myself comfortable, especially at night. I've tried to take OTC sleep meds but I'm so groggy during the day.

I read somewhere on your site that Zoloft may help or it may make it worse. Is this true? I've been on Zoloft for other reasons, but I have noticed my legs are worse, but I don't want to give up the Zoloft because it helps in the other areas. Ambien gets me through the nights.

I'd love feedback. Thanks for your site,
Susan

Medical Reply

You are right on the Zoloft. It may help, hinder or do nothing to your RLS. It probably worsens RLS more than it helps. The only way to tell is to stop, then restart it (with your doctors supervision) and see what happens.

If Zoloft is essential, then adding a drug such as Mirapex may give you relief so that you will need only an occasional Ambien.


Sent: Wednesday, February 14, 2001 12:50 PM
Subject: HELP with tolerance to Mirapex!

My mother and I both suffer from RLS. She's been on Mirapex for a few years and has built up a tolerance to the drug. Her neurologist did not advise her to take "drug holidays" and really isn't very knowledgeable in RLS. She saw her Internist for a check up and they went over all of the drugs she is taking. She complained about her RLS getting worse and the Mirapex not working well, so he took her completely off the Mirapex for 5 days. She's a mess and its only been 36 hours. I told her she needed to be on an alternative drug for the holiday, but the doctors here are treating her like an addict.

Thank you in advance for your time and consideration.

Barbara L.

Medical Reply

Tolerance to Mirapex does not occur very commonly. It is not like tolerance to narcotics which is associated with addiction. Without knowing more information about doses of Mirapex and her RLS, it is not clear that she is tolerant. It is possible that her RLS has simply gotten worse, needing more medication.

If tolerance does occur there are many other ways to take care of the RLS without having the patient suffer.


Sent: Tuesday, February 13, 2001 2:13 PM
Subject: Mirapex dosage

I am a 68 year old male who has suffered from RLS for over 30 years. In April of 95 I finally met a Neurologist (who knows something about RLS). He prescribed Sinemet 50-200, which worked well; however, by October of 96 I was starting to have some problems with it. I said it would have been better if the drug was faster acting. He responded by giving me Sinemet 25-250.

For the next 3 years we experimented with these two medications. His guidance was always try it and see how it works. In April of 2000, I informed him that I was having problems with the Sinemet. He then put me on Mirapex .125 mg two tablets three times daily (i.e., 6 a day). When I reported that I was having problems getting through the night, we changed to 7 pills a day (2 around noon, 2 around supper time, and 3 at bedtime) or a total of .875 a day.

This routine seems to be doing the job, with occasional exceptions. What is the maximum dosage that one can take of Mirapex? On occasion I have forgotten to take the medication on time. How close to the previous dose can I take the next dose?

Thanks for your guidance.
Robert F.

Medical Reply

The average RLS patient needs 2-6 of the .125 Mirapex tablets per day. Very few need more than 12 tablets per day.

If you do not have daytime RLS symptoms, then there is no need to take them in the daytime. They should only be taken 30-60 minutes before the RLS symptoms occur. Normally each dose of Mirapex will last 4-8 hours, so if you feel you need additional pills sooner than that, then you probably need a higher dose.


Sent: Thursday, February 15, 2001 8:30 PM
Subject: Coping with RLS

I thought I would try and see if you could give me some help with my restless legs.

I will start out giving you my symptoms. It feels like growing pains. I want to constantly stretch or rub my legs. When I am sitting, they have a slight throbbing from my knees on down to my ankles. It always gets more severe at nighttime. I have been on several different high blood pressure medications in the last several months. ( Diovan HCT, Covera HS, Toprol XL, and hydrochlorothiazide ). I have stopped taking the medications for the last 2 weeks, and it seemed like my RLS has gotten worse.

Over the last several years I have had problems with RLS, I never knew what it was and when I went to my doctor, he told me it was probably from my sleep schedule or stress related. Due to my occupation, I work different shifts, both days and nights. I very rarely experience it during the day. I have always been able to sleep better during the day when I am working nightshift.

I am looking for some guidance to help live with this and to approach my doctor with a better understanding...

Thank you,
Jim

Medical Reply

You have classic symptoms of RLS. It generally gets worse in the evening or at bedtime, so when you change shifts, you may be able to sleep better during the daytime as the RLS is not as bad at that time.

For RLS that is affecting you so significantly, you should consider medication. Mirapex or Requip are the first choice that work very well for most RLS sufferers. Once your symptoms are relieved, coping with your RLS should not be a problem.


Sent: Tuesday, February 20, 2001 10:57 AM
Subject: new drug of possible benefit for PLMS

Trileptal, a new anti-seizure drug in 150 mg and 300 mg dose tabs may be having a positive effect in diminishing my periodic leg (and sometimes whole body) movements during sleep. I have had this condition for years, verified by EEG several years ago and have tried a variety of drugs to combat it because it disturbs my spouse's sleep and occasionally mine as well. I do not have the full blown RLS but I think my dad had that syndrome.

The other effective medication I have used is Klonopin, a benzodiazepine in 0.5 or 1.0 mg doses, unfortunately the effect diminishes with use and sometimes has no or little effect even when I have not used it for several days. I am now considering this a seizure disorder originating in deep areas of the brain and would like to know if any studies have been done looking at this theory.

Thank you,
Peter R. W.,  M.D.

Medical Reply

Some anti-seizures drug (such as Neurontin) work quite well for RLS/PLMD, but that does not prove that it is a seizure disorder. Many other classes of drugs also work well (including the Parkinson's disease ones and we know that it is not related to Parkinson's disease) and those drugs have no effect on seizures.

We do not know the origin or etiology of RLS/PLMD. Some studies have pointed to cerebral generators of the disorder, but others have implicated a more peripheral cause. It is still quite perplexing. We cannot rule out a central mechanism, but we cannot prove it at this point.

Klonopin tends to be an addicting drug that has a high incidence of daytime sleepiness, so I prefer to recommend the shorter acting benzodiazepines or even better yet, the non-benzodiazepine sleeping pills.


Sent: Wednesday, February 21, 2001 8:06 AM
Subject: Confused as usual

I was just recently diagnosed with RLS/PLMD. I have had the symptoms for as long as I can remember but never knew what it was let alone that it had a name for it. My kicking and twitching became worse over the last few months and I was going with almost no sleep due to all the movement during my sleep. I went to the doctor to find out what is going on and that is when he diagnosed me and that is when I found this web site and just about fell out of my chair with reading others stories.

I thought I was the only one in the world that had this horrible problem. So I thank you for this web sight. I also suffer with rheumatoid arthritis and really thought my problem was due to that. Yesterday I saw the neurologist for the first time and he diagnosed RLS/PLMD. Not only do I have this problem when I sleep I have jerking problems all day long. Now I'm still confused with the day time jerking and really what it is that is happening.

He started me on Mirapex and didn't really tell me anything about it except it's a Parkinson's disease medicine. I had told him that at times I take Lorcet plus for my bad flares of RA and told him that when I take Lorcet it seems to subside the RLS. My question is, What exactly is Lorcet? I know it's a narcotic but in what family? Is it codeine or what?  What is a drug holiday and could you please explain that to me? I had never heard of that until I read the stories of other people.

Will this condition get worse as I get older? I'm only 34 and just would  like to know what is in store for me. Also is it true that people with RA usually suffer from RLS/PLMD? I'm sorry this is so long but I'm really new to all this and I tried to go to the book store to find out information on RLS/PLMD but none had any books on it. I went to three different book stores and no one had any books on it. I thought that was weird when so many people suffer from this.

Well, I guess that's all for now. Your input would be very helpful to me. I just find it nice to know I'm not alone!!!!

Thank you very much,
Jessica from Thousand Oaks, California

Medical Reply

RLS may have a very weak association with Rheumatoid Arthritis. Only one medical paper found a possible link between the two disorders but in general we do not see a great link between these problems.

Lortab is similar to Vicodin which is hydrocodone. It is similar to codeine but a little stronger narcotic. Drug holidays are not well understood or described in the medical literature. We have found that taking regular drug holidays (at least 2 days off the drug every 2 weeks) the chance of addiction and tolerance are markedly decreased.

RLS does tend to get worse slowly as you get older.


Sent: Wednesday, February 21, 2001 3:33 AM
Subject: Hormones and RLS (for previous letters, see February 10, above)

I'd like to know if hormone replacement therapy (specifically PremPro) can cause a worsening of RLS? I'm about to quit taking it in hopes my RLS will diminish, but would like to know if there is any evidence implicating it in RLS. Thanks very much.

Karen U.

Medical Reply

Hormones and RLS are very unpredictable. Most RLS sufferers will have no change in their RLS with hormonal therapy, but other may get worse or even better. The only way to know is trial and error.

A Reply from Karen U.

Sent: Friday, February 23, 2001 4:27 AM
Subject: Muscle movements in legs?

I'm wondering if the following experience is a part of RLS - in my lower legs I can actually SEE my legs moving - in other words, I can watch and first one spot moves, then another somewhere else, and so on - all over my legs - is this "pulling" or whatever, that one can actually visualize, a part of RLS? Thank you. It more or less drives me nuts - I also get bad paresthesias in my lower legs.. I'm wondering if I could have some condition other than RLS, or in addition to it.

Karen U.

Medical Reply

Many RLS patients have PLMD which generally occurs during sleep, but can occur while sitting/resting in the evening. What you are seeing may be minor PLMD type movements. The other possibility is that the movements are muscle fasciculations which are quite common in all people.

Parathesias (pins and needles) are not part of RLS.


Sent: Wednesday, February 21, 2001 3:42 PM
Subject: Need Help

I first found your site on 6/11/99. I have just recently started having more trouble with my RLS. I am on Effexor 150 mg for depression due to Fibromyalgia and Seroquel 40 mg at bedtime for sleep. Could these medications be making my RLS worse? Also can stress or exercise effect RLS. Will look forward for your answer. Thank you so much for your site, it is helpful just to know that I am not alone.

Thanks again,
Vada S.

Medical Reply

Effexor is a SSRI type of antidepressant that worsens RLS more often than helping it (although it is difficult to predict what it will do in any given RLS sufferer).

Seroquel is a new anti-psychotic/antidepressant drug that has some anti-dopamine D2 receptor effects. This is the receptor that the newer and best RLS drugs (Mirapex and Requip) work on. Although I have no experience with this drug and RLS, I would guess that Seroquel would have a high potential for worsening RLS.

Stress very often increases RLS symptoms.  Mild exercise often improves RLS while vigorous exercise tends to worsen RLS.


Sent: Wednesday, February 21, 2001 8:40 PM
Subject: Ultram not working as well?

I had been doing extremely well until about six weeks ago when my RLS symptoms reemerged. I am currently taking 50 mg of Ultram, ( which I take three times a day in doses of approximately 16.6 mg); 0.5 mg of Mirapex (which I take three times a day in doses of 0.125, 0.125 and 0.25) ; and 1mg of alprazolam which I take at bedtime. I take Vicodin to replace Ultram during my drug holiday and continue to do very well during my drug holidays.

My sense is that the Ultram (which I have now been taking since 1997) is less effective than it had been, and I tried to shorten my drug holidays to every two weeks rather than every three, but have seen no benefit from this. I am somewhat reluctant to increase the amount of the Ultram dose, but did try to take an extra dose of Mirapex , but this has not been helpful.

My RLS symptoms involve pain in my legs, which starts at about 9 pm to 10 pm and the only relief I have been able to get is from hot baths. Although I am not sure, I think that I can trace my current difficulties to a missed drug holiday.

Leon K.

Medical Reply

My first thought is that a longer drug holiday (1-2 weeks) may be in order. There is a good chance that your body may "reset" after that and the old dose of Ultram should be effective.


Sent: Saturday, February 24, 2001 9:52 PM
Subject: RLS & No Sleep

Thank you for your web site. I am a 56 year old female with RLS. I get very little sleep in a 24 hour period. Often no sleep; on a rare, good, night about 3 hours. Usually I wake up with a nagging headache. I was able to get Ambien for sleep (1 10mg at bedtime). It helped for a while, but then stopped working. My neurologist has me on 5 Mirapex before bedtime (each .125 mg). I am trying to reduce Sinemet to 2 or 3 a day (each 25/250).

I can't sleep even when the medications control my legs. How can I get more sleep? Is there a better combination of drugs to try? Any suggestions?

Thanks,
C.R., near Fresno

Medical Reply

The first problem is that the Sinemet is possibly causing problems with augmentation of your RLS. This occurs in over 80% of RLS sufferers who take over 2 or 3 of the 25/100 tablets per day. It is often best to taper completely off of Sinemet. Without Sinemet, your Mirapex may be able to control your RLS problems.

It is more difficult to determine what will help your non-RLS related insomnia problems. Even though most people do not become tolerant to Ambien, I still have my patients take drug holidays (at least 2 days off every 2 weeks) which may help prevent this problem. After developing some tolerance, a few weeks off the drug may re-institute its effectiveness.


Sent: Sunday, February 25, 2001 10:11 PM
Subject:  My name for my RLS

I like to call my sensations "alien legs" after the movie the alien, where the creature moves under the skin. It feels like sometimes in my calves that the creature moving around could pop out at any time.

Steve


Sent: Monday, February 26, 2001 11:44 AM
Subject: Marijuana for RLS?

I too have had restless legs for approximately 15 years. I found when I exercised during the day it would be worse. For years, my doctor acted as if I were crazy and offered no help except for Xanax or Halcion. I found the side effects of this to be terrible. Coming off of Xanax was pure torture. It got to the point where nighttime was exasperating and during the day, I was exhausted.

After about 8 years of this I started smoking marijuana at night. This immediately relieved the symptoms. My body could actually stay still. I have smoked pot now for about 7 years and have found that it has the fewest side effects. The only problem is is that I feel extremely guilty about it. I know if I were in a car accident or something it would show up in my blood, even though I do not smoke it during the day. I am a professional who also has a teenager and I do not want to give her the wrong message it is just that the thought of going to bed at night without smoking some pot terrifies me.

The years before I started were absolute torture. Now that marijuana has been approved for medicinal purposes, can this be researched for RLS? It has to better than a lot of the drugs that are out there to help RLS. It seems absolutely ridiculous to me that codeine and barbiturates can be prescribed to help RLS but marijuana can't. It really bothers me to think I could be considered a criminal when I am a very concerned active citizen in my community. Please offers some advice if possible.

Thanks,
June

Medical Reply

We have gotten several letters on our website and I have heard from several patients that marijuana can bring quick and very helpful relief for RLS symptoms. With the amount of reports that I have received, I am sure that it is a potent drug for treating RLS and may help many RLS sufferers.

Marijuana is still not legal for use even in medical conditions. It has been shown to be helpful in cancer patients and for glaucoma, but despite the publicity that it has received recently (especially in California) it is in no way legal. Some local California laws were passed that marijuana could be used with a doctor's note, but the legality of this has been questioned and dismissed.

Therefore, using marijuana is a risky proposition that could get you in trouble with the law. There are also other options that may take care of your RLS symptoms without putting you at legal peril. Mirapex or Requip work as well and are legal. See your doctor about starting one of these drugs and you should not need marijuana to help your legs and then you do not have to worry about the consequences of getting caught.

There is not much if any research being done on marijuana for any medical condition at this time due to the illegal nature of this drug. I agree that it should be considered for cases in which no other safe and legal medications help (and as you have not yet tried Mirapex or Requip, this does not yet apply to you), but as we do not know the long term side effects and other problems of using marijuana, it cannot be recommended at this time.


Sent: Monday, February 26, 2001 12:42 PM
Subject: Is RLS the correct diagnosis?

In the past you were so kind to answer a few of my questions. May I ask you to do me this favor once again?

In October 2000 my family doctor diagnosed me with RLS. I felt she was right. I had the same feelings in my calves (and sometimes in my arms) as many people with RLS: crawling, pulling, like worms going through them, sometimes also itchy (but never painful). I had these feelings only when sitting or laying down and they were immediately relieved by standing up or walking around. My father has had this too for years and I knew there is often a hereditary factor in RLS.

Recently I saw a neurologist for my leg problems. To my surprise he said I might as well have something else. He thinks so because of a few reasons:

- I can point out the day my symptoms started, five months ago. Before that day I never had any RLS symptoms, not even during my two pregnancies.
- In the beginning the symptoms were pretty severe and present both night and day.
- After the first month my leg problems have gradually diminished. By this time I only have very mild symptoms, easily relieved by just putting my legs in another position. The improvement started shortly after I was put on iron medication by my family doctor. My ferritin level was 22 at that time and now is 44. My neurologist doesn't believe iron medication can be beneficial for people with RLS, so he thinks the improvement is 'just a coincidence'.
- I have never noticed any difference in severity between daytime and nighttime symptoms.
- I have been on Sifrol (Mirapex) 0.25 mg before bedtime for a while, but it didn't do anything for my leg problems.
- At about the same time my leg problems started, I also got a pain in my left thumb and left breast. This pain has been present for a couple of months (only in the daytime, never at night) and is - just like my leg problems - almost gone now.

Because of all the 'non-RLS-characteristics' my neurologist thinks I just had a damaged nerve, that is (almost) cured by itself. Of course I was happy when he told me this. But now, when I'm thinking everything over, I have my doubts: Is it really possible that a damaged nerve causes 'strange feelings' in the legs but no pain? And can that same damaged nerve cause pain in the breast and thumb? Where could this damaged nerve be located? And how does a person get a damaged nerve? I haven't had any injury prior to my leg problems.

Do you have any thoughts?

Thank you in advance,
Saskia E. from the Netherlands

Medical Reply

One can never be 100% sure that someone with waxing and waning symptoms has RLS but your case is very consistent with RLS. There are almost no other medical conditions that cause the type of crawling, pulling, but not painful complaints that you have been experiencing. In addition, if these strange symptoms can be relieved by moving the affected limb or limbs (as in your case), then I would venture to say that the diagnosis of RLS is between 95-99% correct. Adding your family history helps make the diagnosis even more certain.

Many women notice their RLS symptoms first during pregnancy, but many do not experience any symptoms until later in life. The improvement in you problems with increasing your ferritin level from 22 (the symptomatic range) to 44 (the beginning of the therapeutic range) should also suggest a classic example of cause and effect, rather than just luck or spontaneous cure. You could stop your iron therapy and see if your RLS condition comes back, but I doubt that you would want to risk suffering again just to prove this point.

When RLS is severe, it can occur equally during night and daytime. Mirapex generally (but certainly not always) takes care of RLS symptoms, but when RLS is severe, higher doses may be necessary (often between .5 to 1 mg) to relieve symptoms. I am not sure what relationship (if any), the thumb and breast pain have with your other RLS complaints.

I cannot say for certain that your neurologist is not correct that you have had a "damaged nerve", but I do not know of any other medical condition that can cause your symptoms other than RLS. If your neurologist can give a name to other possible diseases that can cause your type of nerve damage, please let me know.

A Reply from Saskia E.

Sent: Tuesday, February 27, 2001 6:47 AM
Subject: Re: Is RLS the correct diagnosis?

Thank you very much for your quick reply. The way you help out people with RLS all over the world, is wonderful!

My neurologist has called my condition an "atypical nerve disorder", but I suppose that's just a way of saying he doesn't exactly know what it is.

I know that in severe cases RLS symptoms occur during night and daytime. The strange thing is that even now, when my symptoms are extremely mild, they don't follow the day and night pattern that is typical for RLS.

You are right that I don't dare to stop my iron therapy just to find out if the RLS symptoms will come back. I consider myself very lucky to have responded so well to iron therapy. But I am also a little anxious: will the beneficial effect of the iron stay for a long time or just for a short period? Is it possible to reduce RLS-symptoms for a life-time with iron?

Saskia E.

Medical Reply

It is more uncommon for RLS symptoms to be equal during the day and nighttime when less severe, but not all patients are the same. The term "atypical nerve disorder" is exactly what you have figured out, that is that he does not know what it is.

If the iron therapy did improve your RLS, then it is quite likely that as long as you keep your ferritin levels up, the RLS will be kept under control. RLS can be unpredictable, so it is difficult to guarantee that your problems will not return, but the chances are good that you will continue to do well.


Sent: Tuesday, February 27, 2001 10:31 AM
Subject: Mirapex, Hypotension and Platelet count

In trying to control RLS ,we have tried Mirapex (1x .125) at bedtime with no noticeable improvement.On two occasions we increased the dosage to .25 and each time my wife had an episode of near fainting during the night .Blood pressure at those times read 85/ 60 ( from normal 110/80) .Did you come across a similar blood pressure drop caused by Mirapex ?

As well ,my wife has had extensive chemo and her blood counts have remained low for the last 2 years (i.e. RBC 3,Hemoglobin 110,Platelets 60).As RLS has started last 6 months,could there be a link between the low counts and RLS?

Thank you ,
Frank

Medical Reply

Dopamine like drugs have been associated with orthostatic hypotension (drop in blood pressure when standing up from the supine or sitting position), but so far Mirapex has not been shown to do this. That of course does not mean that it could not be the cause of your wife's blood pressure drop, only that it is less likely.

There is no association with low blood counts and RLS. The low blood count is a much more likely cause of the drop in blood pressure than is the Mirapex.


Sent: Tuesday, February 27, 2001 11:44 AM
Subject: Cabergoline

I have been taking .5mg of cabergoline for about 7 months and was doing very well on this until the last few weeks when my RLS seems to have returned. Although not nearly as bad as before, I have noticed it at times during the day, evening and night and my arms also seem to be affected. At the same time I have noticed that I seem to have been having a lot of ' hot flushes ' and I had noticed some time ago that there seemed to be a correlation between frequent hot flushes and a worsening of the RLS. I feel I have 3 choices now:

1. Try a remedy for the hot flushes ( herbal as I do not wish to take HRT )
2. Increase the dose of Cabergoline to 1mg.
3. Try a break from the Cabergoline and hope that I can then to return to it at my current dose of .5mg. During the break, I could use Zolpidem.

Obviously, I would have to discuss options 2 or 3 with my GP but I would value your advice as you are experienced with this condition. If I choose option 3, how long a break would you recommend? Also, are there any known long term problems with Cabergoline-type medications?

Thanks for your help in the past,
Linda H.

Medical Reply

The hot flushes sound like they are coming from menopause. Changes in hormones seem to affect many RLS sufferers, so treating your menopausal symptoms may be helpful. Recent medical studies have shown that herbal treatments for menopause are very poor, so you may want to reconsider prescription HRT (Hormonal Replacement Therapy).

If you do not use HRT, you may have to increase the Cabergoline. I would suggest increasing in increments of .25 mg rather than .5 mg. I doubt there will be any benefit from taking a break from Cabergoline at the low dose that you are taking.

The drug is very expensive here in the USA. I am wondering how much it costs in England?

A Reply from Linda H.

Sent: Thursday, March 15, 2001 9:30 AM
Subject: Cost of Cabergoline

As promised, I asked the chemist the cost of Cabergoline here in the UK. They said it was about 76 for a bottle of 20 1mg which does seem expensive although how this compares with other drugs I don't know.

Medical Reply

Thanks for the info. It does seem to be expensive on both sides of the big pond.


Sent: Tuesday, February 27, 2001 7:26 PM
Subject: Iron therapy for RLS and PLMD?

I think I had written to you before that I had taken iron supplements to raise my iron ferritin level from 23 to 30 and the RLS got better, the PLMD got much worse.

I don't really like taking drugs, but I was wondering if you think that if I take Mirapex until my ferritin level comes up to 50 and then stopped the Mirapex.. if there is a chance that the PLMD would be improved?

Thanks,
Diana

Medical Reply

Taking iron should help both RLS and PLMD. We know more about its use for RLS than for PLMD, but your plan is reasonable. Once your ferritin reaches 50, stop the Mirapex and see whether or not you still need it for RLS or for PLMD.

A Reply from Diana

Sent: Tuesday, February 27, 2001 8:52 PM
Subject: Iron therapy for RLS and PLMD?

I have been taking .125 Mirapex for 3 nights now for PLMD and it hasn't helped. I read the treatment page, which said that you can increase every five days, but I wasn't sure whether that meant to take 2 a day at different times or 2 right before bed instead of the one I have been taking. I hope this makes sense.

Thanks,
Diana

Medical Reply

You can increase every dose of Mirapex every 5 days. So, if you only take one tablet at bedtime, then increase that dose to 2 tablets in 5 days. If you were taking one tablet twice a day, then you would go up to 2 tablets twice a day after 5 days (if necessary).



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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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