Patient letters on RLS symptoms and remedies- Page 51

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My wife, age 65, has had RLS since her teen years. In more recent years she has had tremendous relief with a variety of medications. For several years she received help from Oxycontin, amitriptyline, etc. Just a few weeks ago our doctor began changing some of her medications.

She stopped taking Oxycontin and amitriptyline and have tried Requip with an extensive rash reaction. After dropping the Requip her rash gradually cleared up. Four days ago she began taking .125 Mirapex each night. This seems to be solving the RLS symptoms but her main problem at present is lack of sleep. The doctor has prescribed Ambien, and she occasionally uses that med., but it has not helped her sleep deficiency. (She has slept hardly at all of late.)

She, also, is taking blood pressure meds and her blood pressure and pulse rate have been problematic for some time, especially in the past month, with additional problems in the past two or three days.

I feel confident that Mirapex will be great for her restless legs if we can help her get the sleep she needs and can successfully cope with side effects.

Two years ago I discovered this web site. The letters were my life story and the end of frustration for myself and my family. It turns out that I have had restless leg since childhood. Now my grandchild's teacher and principle has decided that my grandson has ADHD and they are insistent that we send him to a doctor the principle has referred others to over the years.

We instead insisted on going through the steps advised to us - cognitive testing, hearing tested, making an appointment with his doctor for a complete physical with thyroid test and to be referred to a child psychiatrist that can test him for ADHD. (instead of sending him to this doctor that does nothing but treat attention deficit children and it bothers us that ALL referred have been told by this doctor that they were attention deficit.)

My son grew up during the era when every child that wiggled in their seat were put on Ritalin and is very against putting his child on this med. I have been reading everything I can find and he has all the signs of ADHD.

While researching Ritalin and alternative medicines for ADHD I ran across studies of a possible link between sleep disorders and day time ADHD. His teacher says the worst time for the him (restless) is when they all have to sit on the rug and listen. He can not be still and distracts others with his constant moving and interacting with those next to him. If he does have restless leg - what medications are being used for children and what long term problems-effects associated. He is 7 years old.

I see my doctor next week and am going to speak to him about testing for a sleeping disorder. If he does then is it a matter of what comes first the chicken or the egg. ADHD causing sleeping disorder or sleeping disorder causing attention deficit hyperactivity? Or both? Should one be treated or both? I hate to med him day and night.

I'll make this as short as I can but I need to give you a little background. I've been on Requip and Neurontin for several years and it has helped me most of the time. In mid-September I spent 11 days in the hospital with renal failure and digoxin toxicity (recovered with no dialysis and no pacemaker) and had trouble with RLS only in the ER and for a while after I was admitted.

During my stay it was decided that I was anemic so I was given 1 bag (however much that is) of iron via IV. I also received a blood transfusion (plasma, I think) I was fine for several weeks after release from the hospital and had no problems with RLS. I was taking 1.0 mg Requip 3Xday plus 100mg Neurontin 3Xday. This regime was ordered by my cardiologist and/or nephrologist.

When I began to have more severe symptoms, I went to see my neurologist and she put me back on .5mg Requip am & noon and 1mg dinner & bedtime and gradually increased the Neurontin to 100 mg 3Xday plus 300 mg at bedtime. Now I'm having trouble all day long with symptoms in legs, arms and even neck (is that possible?).

All this to ask you a question. Could I be having augmentation from Requip as I did from Sinemet? I need to call or see my neurologist and, since she's still learning about RLS, I need to know what questions to ask. If you have time, I'd appreciate some suggestions as to how I should approach this.

My Neurologist, who is certified in sleep disorders, insists that I can't have RLS because my recent sleep study indicated that I do not have PLMD. Since I have been reading your site, I am aware that about 20% of the people with RLS do not have the associated PLM. He said that he has treated hundreds of patients and that none of them had RLS without PLMD. To prove to me that I did not have RLS he gave me a prescription for Sinemet CR saying that this would correct the symptoms immediately, if I had RLS. I said that I didn't want to be contrary but that I had read that Sinemet could make the symptoms worse and make them start earlier in the day. He said that simply wasn't true.

Now I am sitting here looking at this bottle of Sinemet and I don't want to make myself worse just to be polite. When augmentation does occur, is it ever likely to revert back if the medication is stopped?

Recently I began a low-carbohydrate, high protein diet. I've been on it now for 3 weeks. Unexpectedly, I have noticed about a 90% reduction in my RLS symptoms. Previously I had been on .25mg of Mirapex nightly to control it. I have been off the Mirapex now for over a week and only have noticed some slight symptoms upon waking at about 6am (before the symptoms started at 9:30pm - almost exactly - every night).

But this is very occasional and very tolerable. With the low carbohydrate diet, I'm religiously taking a good multi-vitamin, extra calcium/vitamin D supplement, extra potassium, and extra vitamin E. I have effectively cut out all sugar and most carbohydrates (no snacking at all), with higher levels of protein throughout the day. Not only do I feel much better overall, my RLS is almost gone and I sleep much better, as the dark circles under my eyes are slowly fading.

I've read of a couple of other's experience with low-carbing having the same great results at controlling RLS. I had tried everything before (so I'd thought) and started low-carbing for weight loss reasons, never guessing that it could in any way have a positive effect on my RLS. Wondering if you've heard of others who may have had this experience or if there's any medical research on the correlation between. RLS and decreased carbohydrates in the diet?

I have had 3 sleep studies, the first confirming I have obstructive sleep apnea. Getting a CPAP took care of that. The second (and actually the first) showed I have PLMD. Approximately 250 movements in a 6 hour period. The third showed that Mirapex has taken care of that.

My question is about the head rolling. I think it is keeping me from entering "deep sleep" (stages 3 & 4). What could be causing it ? I have never had any head trauma, and never had any surgery any where.

Subject: RLS symptoms worse with exercise?

I have all the classic symptoms for RLS X 2. I have been to a Neurologist and he didn't quite agree with my assessment but didn't have an alternative. I am an avid runner and biker (pedaling) and this seems to make my symptoms worse. When I don't exercise for a couple of days, I feel relief of most of my symptoms.

I am wondering if there are any runners/bikers out there that also have RLS and how it affects their symptoms.

Randy F.

A Medical Reply

This is a common problem for RLS patients who exercise at a high level. Mild to moderate exercise generally helps RLS while vigorous exercise most often worsens it. I have many patients who have had to curtail there exercise due to this problem.

You might be able to get away with higher levels of exercise very early in the day, but for many even that trick will not help. Sometimes, taking a dose of Mirapex or Requip 2 hours before exercise (again, the earlier in the day, the better) may have some benefit in reducing the resultant worsening of RLS.

Sent: Monday, January 05, 2004 2:48 AM

Subject: RLS and Allergy Problems

I have what I consider medium RLS attacks, taking 10/100 (4 times a day) evening Sinemet with accompanied by Comtan & and 1 Clonazepam in the evening to get me to sleep and can usually make it through the evening, all prescribed by my neurologist

However I also take Zyrtec daily, and occasionally allergies get beyond its control and usually wind up with a bronchial infection twice a year and then suffer thru all the antihistamines and cough syrups they prescribe. Still have constant sinus drainage, what can I take to dry this up without further complicating the RLS?

Have read most of the letters on this site and have found most of them very informative, but not much addressing allergy complications and RLS.

Thanks in advance,

Jan R.

A Medical Reply

Antihistamines usually worsen RLS. The newer ones such as Claritin, Allegra, Clarinex and Zyrtec are probably the best tolerated ones but even these ones can worsen RLS in a significant percentage of RLS sufferers.

Nasal steroids (Flonase, Rhinocort, Nasonex, Nasacort, etc.) are very effective and safe for sinus allergy problems and do not affect RLS.

Be careful with Sinemet as it may start to cause augmentation and rebound while other Parkinson's disease drugs like Mirapex and Requip tend to work much better for RLS.

Sent: Friday, January 09, 2004 10:04 PM

Subject: Change of medication

I'm back again for the third time-- and you've almost certainly answered this question several times already. But, I'd be very grateful if you would deal with it again. I have PLMS, with probably some RLS thrown in, but it is is the jerking that usually bothers me most. Sometimes it starts up for a while in the afternoon or evening, but the real problem is the jerking and unpleasant sensations that begin as I try to fall asleep.

I have been managing until fairly recently by taking 0.25 Mirapex 30 minutes or an hour before bed and then, when everything starts up, forcing myself to get up again to have a bowl of cereal (which I end up quite enjoying but I really don't need the calories). That used sometimes to be enough to calm everything down, but now I have to add a low dose of Ambien or Xanax more often than in the past--1, 2, sometimes 3 times a week. I try to limit it as much as possible but if I am planning on doing anything the next day the temptation is great.

I suspect that it is those pills that are helping me and not the Mirapex any more, since the jerking etc. comes more or less inevitably. Tonight I took 1 1/2 of the 0.25 Mirapex but the jerking started as usual.

My questions are: Since I don't have full blown RLS and am not bothered during the day and can certainly sit without a horrible urge to move, would a higher dose of Mirapex be contra indicated? You mention that most can control their RLS by a certain dosage (0.2-0.4) but since I don't have the continuous problems that others do would that amount seem rather high for a case like mine?

Also: if I change to Requip, should I start at the lowest dose?

Again, thank you so very much for your help,
Vivien

A Medical Reply

The dose needed for RLS/PLMD can vary quite considerably with each patient. In many patients, it takes up to 2 hours for the Mirapex to fully kick in, so taking the medication earlier may be helpful. It may be helpful to increase your Mirapex dose (under the supervision of your doctor) until symptoms are resolved.

Requip may work better or worse than Mirapex and if used should be started at a low dose and increased as you have stated.

Sent: Saturday, January 10, 2004 7:59 PM
Subject: Pain with RLS?

I have Restless Leg Syndrome for quite some time. Mostly at night, after relaxing from the day, but sometimes during the day too. The doctor I am seeing now says there is no pain with Restless LS. I hate to argue, but I do feel pain. Sometimes when traveling my legs begin to hurt. I usually have forgotten to bring along a Tylenol or something for pain so I move around trying to make my legs feel better. Exercise seems to make it worse & not exercising seems to make it worse. I know this is a contradiction, but it is the truth.

A Medical Reply

There is a neuropathy (nerve condition that is usually painful) associated with RLS that occurs in a minority of RLS sufferers (likely less than 20%). This can be very difficult to treat but often responds to most pain killers (Vicodin) or drugs such as Neurontin.

Activity does not usually affect this neuropathy pain problem.

Sent: Friday, January 16, 2004 1:26 PM

Subject: RLS and "running in my sleep"

What a relief to find this site. I have suffered from RLS since childhood, having many wakeful nights as a child due to 'growing pains'. It got worse into adulthood after my 1st pregnancy. My husband at the time, would wake me (if I was able to sleep!) thinking I was having a nightmare. I was single for a few years and slept alone so the only person I bothered then was me! I have always had hard time falling asleep, I thought I had some sort of reaction to my laundry soap because my pajamas and bed clothes made me itch! Legs mainly but sometimes trunk, face and arms. Funny now that I know the itch was internal.

Now that I am more aware of it and pay attention to it, it starts in my left leg with an itchy poke and then an involuntary jerk wiggle wiggle, usually my calf, sometimes thighs, then switches right leg with the same itchy poke, it goes that way for about 2 hours until I can actually fall all the way asleep. Then in my sleep I march or run!

My new husband wakes me up to tell me to 'honey, please sleep on the couch!' because I am in constant motion some nights ALL night long! (Poor guy, I also snore!!). I stumbled upon this site after putting two and two together, the itchy legs at night and the constant movement! I put it into a search engine actually typed 'running in my sleep' (my husband calls it that!) and came up with RLS!

I scheduled an appointment with my doctor and start a prescription for Mirapex this weekend. I am hoping for the best as I'm tired of sleeping on the couch!

Michelle

A Medical Reply

Good luck. You should do well with treatment.

Sent: Monday, January 19, 2004 10:07 AM

Subject: Questions about Mirapex

My doctor prescribed Mirapex (she is a family practice MD, not a sleep specialist). I took .5 mg on the first night at bedtime, couldn't sleep, tossed and turned all night (husband said he didn't notice my legs as much!) when I did manage to nod off, I had the most vivid scary nightmares I've ever had in my whole life! (Demonic bad guys, death, murder, ick ick ick) I took it the 2nd night, same thing.

I'd honestly rather have my legs going all night then to be scared to death like that! 3rd night, last night...I cut the pill in half 0.125 mg, no night mares, still tossed and turned, slept a little better, husband said he noticed my legs 'a little' but not as bad as before. My question is 1). Anything I can do to take the full .5 mg and not get the nightmares? or 2). Is the 0.125 mg at all therapeutic for the RLS??

Help! My doctor wasn't much help as I called her office and her nurse told me that she didn't think the Mirapex was related to the nightmares!!

Help!
Michelle

A Medical Reply

I normally start patients on .125 mg tablets and only increase the dose if necessary. The lowest dose that takes care of the symptoms and does not cause side effects is what we consider the best dose.

If you broke the .5 mg tablet in half, then the dose you took was .25 mg. If that is correct you could even lower your dose to .125 mg and see if that helps.

If .5 mg causes these nightmares (which is very likely) then there is likely nothing you can do to prevent this problem while at that dose.

Sent: Wednesday, January 21, 2004 1:10 PM

Subject: Iron therapy & flatulence

I hope you can pass this along to the person who had flatulence with iron therapy. I know that constipation and stomach irritation are the most common problems with high doses of iron, but some of us (and I'm one) have the opposite reaction to iron: I suffer diarrhea and gas. High doses of ferrous sulfate are especially hard on me (at lower doses, it does cause constipation for me).

My ferritin level was 7 when it was first tested and I was able to raise it to over 30 with oral iron therapy. I take iron bisgylcinate, which is available at most health food stores and some drug stores and is much easier on intestinal tract. I started at about 65 mg a day, then tapered down to about 25 mg a day. When I stopped taking iron, my ferritin level dropped. Iron, along with magnesium, does seem to help my daytime RLS.

A Medical Reply

Thanks for your suggestions for iron therapy which can be very difficult for most patients.

Sent: Wednesday, January 21, 2004 3:32 PM

Subject: I can't believe it! It has a name.

I am 30 years old and for the first time tonight I have found that what has driven me up the wall in churches, cars, on buses, and in bed, is most probably a mild form of RLS.. I can't believe it has a name! It's good to know. I'm not sure a doctor would take it seriously here in Belfast though would they? I like the idea of the non medical solutions. I'll give them a go. So, I'm off to stretch, wrap my legs and ask for a tickle.

Take care,
Andy.

A Medical Reply

You should be able to find a doctor in Belfast or anywhere else to take RLS seriously. The doctor just needs to be well trained and then it should not be a problem.

Non-medication treatments often work well for mild RLS.

Sent: Wednesday, January 21, 2004 8:10 PM

Subject: Tramadol

I have been through the list of RLS drugs. My doctor and my sleep specialist have worked hard to find the right solution. To this point, I still believe that Tramadol has provided the best relief for me. The second best solution has been Mirapex (which I am using one .5 mg per day), but it takes time and patience as this drug took nearly two weeks to be effective (stepping up from .125 to eventually get to .5). I

f I was not concerned about the addictive nature of tramadol I would take 200 mg everyday and leave the Mirapex behind. I do not have a history of drug addiction, but often wonder if I would recognize it when it happened. I have trouble discerning if I am becoming addicted to a specific drug - or just enjoying the sleep.

A Medical Reply

It can be difficult to know when one is addicted to a drug and often we do not realize this problem has occurred until withdrawal symptoms occur when stopping the drug. Usually, addiction manifests as tolerance to the drug which requires a greater need for the drug to get the same therapeutic effect.

A good way to try to avoid addiction/tolerance to a drug such as tramadol (which has a very low incidence of addiction) is to take regular drug holidays (often about one weekend every 2 weeks or so). However, if the combination of Mirapex and tramadol is working well, there is really no reason not to continue on that regimen.

Sent: Thursday, January 22, 2004 12:50 AM

Subject: Cheaper generic for Mirapex

My husband has recently switched from Sinemet to Mirapex. The Sinemet caused him to break out all over in a rash. The Mirapex is working to help the RLS but he can't sleep. We are hoping the side effect of insomnia will lessen in time. Our question is this: Is there a generic for Mirapex. Our insurance is not paying for it and we are finding it quite costly.

Thanks for your help

Carmen

A Medical Reply

There is no generic for Mirapex. Generally, drugs have to be on the market for about 15 or more years before they become available as a generic drug and Mirapex and Requip have only been out for a few years.

Sent: Thursday, January 22, 2004 4:48 PM

Subject: My RLS

For months now I have had that oft-described "creepy throbbing" sensation in my lower legs right as I lie down to go to sleep. I would start shaking them (or one, if it only happened to one leg) or if that didn't help actually punch them. Eventually I would get up and just walk around the apartment, or stand until it felt okay. I would usually fall asleep pretty quickly after walking around and would sleep through the night. My girlfriend complained that I would kick her in the middle of the night though. This doesn't happen every night.

Eventually my girlfriend and family told me I should just see a doctor, and after reading about lower vein thrombosis somewhere I decided to check it out. SO today I went to the doctor and he told me that I have RLS. I checked the internet and lo and behold I see all these people who have what I have (although most seem to have it worse). Good to know I am not alone.

A Medical Reply

Most of the letters that are put on the site are written by the more severe RLS patients. Like all medical problems, the majority of RLS sufferers have the milder form of the disease, like your case. When you feel that you need more help for RLS, there are many good medications to treat your RLS symptoms.

Sent: Saturday, January 24, 2004 10:00 AM

Subject: Depression and RLS

I suffer from long term, chronic depression, coupled with anxiety, and RLS. I have had success with the RLS with Permax: .05 mg., 2 @ dinner time and one at bedtime for a total of .15 mg per day. I find that I must not exceed this dose, or I experience augmentation, but I am able to manage the rare times when it doesn't seem to work so well. Like many other people with depression, I have had little success with medication that does not exacerbate the RLS.

Until recently- I have been on the following: Wellbutrin 150 mg. (higher dose caused problems). Wellbutrin coupled with anxiety resulted in adding Xanax (approx. 4 mg. per day); tremors/palpitations resulted in adding Atenolol 50 mg. ( a high blood pressure med.) This mix is not helping the depressive episodes. Sleep is erratic and I have had a few episodes bordering on the suicidal. I have tried all the antidepressants, plus Seroquel and Remeron- all exacerbate the RLS. I am currently discontinuing the Wellbutrin, as I feel that it is making no difference.

Would you be able to advise other medications for what is becoming severe depression? I am under the care of a psychiatrist, and it was your helpful advice that helped us succeed with the Permax. Incidentally, I believe that the Permax has a contributing factor in loss of libido. The Wellbutrin did not help that problem, which is now extreme. I am in menopause.

Thank you in advance for any advice you may share,
M. M. Canada

A Medical Reply

First off, you may get better success with Mirapex or Requip for your RLS. They tend to work better for RLS with less side effects.

It is very difficult to decide on medications for RLS. Even though Wellbutrin, Serzone and Remeron tend to be the best for RLS sufferers, these may bother RLS and the other ones that are supposedly worse may help some RLS patients.

Sent: Saturday, January 24, 2004 11:43 PM

Subject: RLS

I have had Rheumatoid Arthritis for 17 years...onset at age 39. I have been dealing with what I call "flexing" each night when I attempt to relax in a chair or go to bed to sleep. It is from my waist down to my ankles and it is an uncontrollable need to (with great pressure) stretch, flex, wiggle, move both legs and feet intensely, but without jerking.

It is horrible and insatiable and I feel like crying out. I do not feel creepy crawlies or pins and needles. Every one with RLS seems to have these crawlies and jerking legs ....I do not. Are my symptoms out of the ball park as far as RLS? Please respond....

Thank you

Barbara

A Medical Reply

You do not need to have creepy crawlies in your legs to have RLS. Many RLS sufferers just complain about a pulling or stretching or tightening sensation in their legs (or many cannot even describe the uncomfortable sensations) that make them want to move their legs and they get relief while they move the affected limb.

It does sound as if you have RLS.

Sent: Wednesday, January 28, 2004 7:02 PM

Subject: Opioids

I have had RLS for about 3 years and have been badly misdiagnosed three times. Until recently, I have been using marijuana and whatever else I could scrounge up to get to sleep. I bought some Tramadol on the internet because I have had a great deal of success with opiates in the past and it worked great. But I can't afford $140 a pop for 3 weeks worth of sleep. So I finally saw a neurologist and he flat out refused to prescribe tramadol insisting that I take Mirapex instead. When I expressed my reservations about dopaminergic drugs, augmentation and sleep attacks he made me feel like a drug addict for refusing (politely) his therapy. I just want to sleep, not flood my spine with dopamine. Why are doctors so reluctant to prescribe mild opiates when they seem to work so well? Why do neurologists seem to dismiss the dangers associated with dopaminergic drugs?

The concern with pain killers for RLS (or any other medical problem) is that there is a risk of addiction and tolerance to the medication. If used correctly, the risk may be very small, but still must considered if alternative medications are available to treat the medical problem.

Mirapex and Requip usually work very well for RLS and thus avoid the need for any pain killers. Augmentation and rebound are uncommon problems with these newer Parkinson's disease drugs and they are very safe otherwise. When these medications are not successful in relieving RLS symptoms, then it is very appropriate to use the pain killers.

Sent: Thursday, January 29, 2004 7:05 PM

Subject: RLS question about Mirapex.

I am a 52 year old male. I have had RLS symptoms since 1996, but was finally diagnosed with RLS/PLMD last September 2003. My RLS seemed to come on after a bicycle accident (concussion, even with a helmet). But who knows.

I took large doses of Nortriptyline (150mg) along with gradually decreasing doses of Neurontin (1800-0mg - 600mg three times/day) for many years as a successful treatment for insomnia and (undiagnosed) pain. Although I was happy as a lark and slept like a baby with this treatment, I had a 24/7 pulse of 100 and blood pressure of 160/90.

I am now taking 600 mg of Neurontin at night when going to sleep and Neurontin in the afternoon and early evening when symptoms come on (tingling in the scrotum area, PLMD and sharp stinging pain here, there and everywhere). Unfortunately, I always wake up exactly 5 hours after taking the Neurontin at night (after the Neurontin wears off?) and sometimes have a hard time falling back to sleep. I seem to average around 6 hours of sleep a night, which doesn't seem like nearly enough. I am very sleepy very often during the day and the Neurontin doesn't seem to be helping suppress the other symptoms that well during the day.

I always felt that the reason Nortriptyline worked so well at depressing the RLS symptoms and pain was that I was sleeping so well. Getting the appropriate full amount of sleep seemed to do the trick.

My doctor did give me Mirapex for when the Neurontin eventually stopped working. Do you think it is time to switch over to Mirapex? Is there anything that you could suggest that would help?

Thanks. The S.C. RLS web site has been very helpful!!

Tim H.

A Medical Reply

Mirapex (or Requip) are generally the best drugs for RLS for most patients. They are definitely worth trying. They may eliminate the need for any other RLS medications although you can certainly mix them with the other drugs. Mirapex works much better when taken 1-2 hours before RLS symptoms occur rather than when they are not relieved by another drug such as Neurontin.

Nortriptyline is more likely to worsen RLS unless it puts you to sleep before that can happen (the sleepiness is actually only a side effect of the medication).

Sent: Friday, January 30, 2004 4:55 AM

Subject: My story & question about long term effects of Mirapex

I have lived with RLS for more than 40 years. Some days the symptoms are far worse than others. I have suffered many a sleepless night over the years. I have tried many remedies without success including Quinine and various over-the-counter pain relievers. I thought it was something I would have to live with and by accident ( I mean that literally) I found the relief that has been eluding me for so many years.

I fell and broke my arm recently and my doctor prescribed Hydrocodone for pain relief. After a week I noticed I didn't have RLS symptoms and had a fairly restful sleep. Even though the pain from by broken arm subsided I continued to take a Hydrocodone pill each night at bedtime and the relief of RLS symptoms continued.

At a follow up doctor visit I mentioned the matter and my doctor said unless it was completely necessary, he did not want to prescribe such a powerful pain reliever and wanted to see if he could treat RLS some other way. He said the medical community had seen success in treating RLS with Mirapex and gave me a prescription for .25 mg per day. He said I could increase the dose to .5 mg if I didn't receive relief.

I have been taking Mirapex for a month now and have not suffered the nighttime misery that plagued me for decades. Fortunately I have only needed the lower dose and have not suffered any noticeable side effects. So my story is one of relief and I urge any of you who have suffered like I have to talk with your doctor about Mirapex. I hope you receive the same results as me.

My question is: What are the long term side effects or concerns in taking Mirapex?

Jim

South Carolina

A Medical Reply

Mirapex and its cousin, Requip are great drugs for RLS as you have already found out. As far as we know there are no real long term side effects to be concerned about. A small percentage of patients may develop some tolerance to the drug but this most often does not present a great problem.

Sent: Wednesday, February 04, 2004 9:53 AM

Subject: Hormones and RLS?

I have had what I called "jiggy legs" at night for years. The episodes seem to come in cyclical spurts. Usually the last (luteal phase) of the cycle. Since I am now going through the change my RLS have worsened enough to make bedtime an absolute nightmare for me. I call my bed my torture chamber.

Is there a relation to RLS and hormonal changes? Does this mean I forever have this as a chronic struggle?

Merynn

A Medical Reply

RLS is quite often related to female hormonal changes. This is not well understood as some get better with menopause but most seem to get worse. Unfortunately, this usually means that your RLS will stay with you indefinitely, but the good news is that there are many good medications to treat this disorder.

Don't struggle with the RLS symptoms. See your doctor and get treatment and then live a normal happy life.

Sent: Thursday, February 05, 2004 7:41 AM

Subject: increasing Mirapex

It has been about 5 years now that I have been experiencing RLS, and taking medication, Mirapex, after a brief time on Sinemet. From an initial dose of .125 each night, I am now up to .5 mg. each night. Lately, that has not been working well, with symptoms occurring at night, AND now even during the day, if I get really relaxed. That's pretty disturbing! I only sleep about 4 or sometimes, if I'm lucky, 5 hours per night, leaving me very sleep deprived.

My question if this: shall I up the dosage to .750? Last night I tried it, and slept a pretty good night's sleep. What a blessing! However, I worry about taking so much, with early evening sleepiness so extreme, I fall asleep sitting up watching TV as early as 8 or 9.And also, the side effects. (Is the sleepiness one?)

Also, the need for a higher dose of Mirapex has been much more rapid than at first; I have only been taking .5 mg for a few months. One other question: (and thank you so much for being available for helping): I have severe arthritis in one ankle and am planning on having ankle replacement surgery, this I'll have to be still for a while.

Help! How to alleviate RLS symptoms without resorting to drugs that either constipate or make one feel so drugged out ? Sorry to be so wordy, but these are my concerns. Last question: I have recently had to start taking Tamoxifen, after having a second bout with breast cancer (14 years ago) Could the lack of estrogen be part of the problem???

I appreciate any and all advice you would send my way.
Gyana P.

A Medical Reply

It is impossible to say whether or not the Tamoxifen is causing problems with your RLS. It is certainly possible, but the only way to decide that would be to stop it for a while, then restart it and see what happens (and there are clearly good reasons for you staying on the drug).

You may be getting some tolerance to Mirapex (or your RLS is just getting worse and you thus need more Mirapex). Sometimes, changing to another drug such as Requip for a while may help this tolerance problem. The current dose of Mirapex is not that high yet.

You and your doctor may also consider adding other drugs such as Ultram which may help and let you keep the dose of Mirapex lower.

Sent: Thursday, February 05, 2004 11:43 PM

Subject: Re: RLS

Thank you for the suggestion. I went to the doctor today and he did up the dose of Mirapex. We will see how it works. I was reading your web sight last night and was talking to my Mom and she knew I had problems with my legs, I told her that I found out that RLS is hereditary and then she started telling me about her legs. I knew that she had problems at night but we never put 2 and 2 together. She is now going to go in and have hers checked out.

Thank you so much.
Cheryl T.

A Medical Reply

I hope the increased dose of Mirapex works for you. If not there are still lots of alternatives. At least 60% of RLS cases are hereditary. If you check, you may even find other family members with RLS.

Sent: Friday, February 06, 2004 9:49 PM
Subject: Jerking wakes me up at night?

What causes a person to wake up to a jolt at night? this has happened to me before, but doesn't happen often. sometimes I will see that I'm falling off a cliff or something like that in my dream and then I wake up with a jolt. but the shake doesn't continue, it just kind of wakes me up.

If you could answer this, it would help me so much, I have been trying to figure this out for a little while.

Thank you,

A Medical Reply

What you are experiencing is called a hypnic jerk. It occurs during stage 1 sleep (very light sleep, such that if anything occurs you wake up and are not even sure that you were asleep) and is just like you described. It is nothing to worry about and happens to most people at some time or other.

Sent: Monday, February 09, 2004 5:15 AM

Subject: Help for RLS

My Mother, myself and now my daughter (age 37) suffer from RLS. My doctor has had me on 150mg.of Trazadone for several years. I find using just half of this medication is all I usually need. It is safe and non-addictive. I suffer no effects from same and believe it could help many of those suffering from RLS. I take it a few minutes before I go to bed every night.

Carol A. M.

Morristown, NJ

A Medical Reply

Trazadone, is an antidepressant that has sedative qualities and may help RLS patients that have trouble falling asleep. It may, however, worsen RLS is some patients, so cannot be recommended for most RLS sufferers. It is non-addictive, but tolerance can occur to its sedative effects with time.

Sent: Tuesday, February 10, 2004 11:42 AM

Subject: RLS/MIRAPEX

I have suffered the agony of RLS for well over 25 years. During that time I seldom if ever had a good nights sleep and if I had meetings, or sat for long periods during the day, the effects would kick in with a vengeance making the meetings excruciatingly uncomfortable. I eventually reached the point where I was not sleeping at all which led to a sleep test and a correct diagnosis back in 1997.

My neurologist proscribed Sinemet (I forget the exact dosage) 3 times a day (just before bed time, first thing in the morning and late afternoon) and the relief was immediate and most welcomed. Unfortunately about 3 years ago the RLS sensations began to creep back as the Sinemet became less and less effective. I was then placed on .25mg of Mirapex 3 times per day which has worked exceptionally well.

I recently saw a new neurologist who recommended that I try cutting out the pill in the morning and just take one late afternoon and one just prior to bedtime. I have tried this for 2 weeks and have once again learned to dread/fear meetings as the desire to stand and/or move around becomes almost unbearable. I have gone back to taking the Mirapex 3 times per day and will discuss the situation with my neurologist when I visit him in the next couple of months.

I do not like taking medication that is not required (seldom if ever even take aspirin) so I understand that the neurologist may have just been trying to determine if taking the pills twice per day would be as just as effective as my earlier dosage. My question is, should the amount of Mirapex that I am taking (.25mg 3 time per day) be of concern to me?

Brian

A Medical Reply

The amount of Mirapex that you are taking is a very low dose for Parkinson's disease patients who can take up to 3-5 times that dose. The average RLS patient needs between 2-6 of the .125 mg tablets per day, so your dose is not really that high.

Sent: Tuesday, February 10, 2004 1:04 PM

Subject: PLMD

I am a 50 year old female who has suffered from PLMD for at least 20 years. After years of strange looks from doctors when I tried to explain it to them, I discovered it had a name and tons of other people had it too. I cried.

My PLMD was treated with Sinemet from 1996 until now. In November 2003, I started on Mirapex. It is wonderful!!! And I'm completely off of the Sinemet.

My question is this; do people gain weight from taking Mirapex? I noticed that I started to gain weight rather quickly. Typically, I'm a slow gainer and this just didn't seem right. The weight gain seemed to coincide with starting the Mirapex. The side effects don't say anything about weight gain, but I thought I read somewhere that people complained of the weight gain to the point where they had to stop the Mirapex.

Please let me know. I appreciate the assistance!

Sandra M.

A Medical Reply

Weight gain is not listed as one of the side effects of Mirapex. I have heard of only a very few patients complain of this problem. Perhaps a change to Requip, which also works on the dopamine receptors but is metabolized differently may be just as effective but not cause problems with weight gain.

Sent: Tuesday, February 10, 2004 7:41 PM

Subject: Re: Nausea from Carbi/Levodopa

I have had extreme nausea since taking Carbi/Levodopa for my RLS. My doctor stated that I needed to be careful in taking any type of nausea medication while on Carbi/Levodopa and recommended Zofran tabs 8 mg. which I took for 10 days with no relief. At the tremendous cost of the Zofran I am reluctant to continue it if it is not going to help. Would appreciate any medical reply.

lmd

A Medical Reply

The real issue with most anti-nausea medication is that it worsens RLS. Kytril and Zofran (and the much cheaper domperidone from Canada or Mexico) are fine to use with RLS.

Sinemet (Carbi/Levodopa) is not really used much any longer for RLS as it causes worsening of the disorder with time. Have your doctor switch to Mirapex or Requip and you will likely do much better and with respect to your RLS and not have any nausea.

Sent: Monday, February 16, 2004 8:45 PM

Subject: Mirapex & Hydrocodone

I have severe RLS and my doctor prescribed Mirapex, .125x2 three times a day, one hydrocodone and one Restoril at bedtime. This worked for a while but now I am waking up about 3AM . I don't have any side effects, but my question is where do I go from here. Would a change in medication help. The hydrocodone seems to help but I don't want to take any more than one. I was told it would not become a problem if I only took one a day. I value your opinion.

Thank you for providing some answers to my problem. It isn't easy to find a doctor that is knowledgeable on RLS and PLMS.

TW in Texas

A Medical Reply

Unless you have daytime RLS, there is no reason to take the Mirapex other than 1-2 hours before bedtime. You may need to consolidate your Mirapex dose and take the lowest dose before bed that permits your RLS to be controlled.

Usually taking hydrocodone once a day should not be a problem. You can alternate the hydrocodone with Ultram (or just take drug holidays) which should help further eliminate any chances of tolerance to this drug.

Sent: Monday, February 16, 2004 9:05 PM

Subject: Waking and staying awake on Mirapex?

I have RLS and PLMD (for 30 years), am female and in my mid 40's. I've been on Mirapex for about 16 months. I've had some augmentation of my RLS, but taking additional Mirapex earlier in the day has helped. After about 4 months on the Mirapex, I started having trouble falling back to sleep when I awaken 5 to 7 hours after falling asleep.

My mind is whirring, random thoughts are popping in my head, and songs I'd rather not hear are playing repeatedly in my head! I often notice that my body temperature rises and I get quite warm and have to throw off all the covers and I can't fall back asleep until I cool off, which takes 1/2 to 1 hour.

Is this from the dopamine reception being increased? Is there something I can do to eliminate this? My neurologist prescribed Neurontin in addition to the Mirapex, but this makes it difficult for me to wake up in the morning if I take it right before bed, and if I take it 1-2 hours before bed, I still have the problems with not being able to go back to sleep.

Thanks in advance,

Ann

A Medical Reply

Mirapex can cause either insomnia or sleepiness in given individuals. The side effects that you are experiencing are somewhat more extreme than most but not all that different. Perhaps a change to Requip may be helpful. You may have trouble with all dopamine agents, but only trial and error can determine this.

Sometimes adding a small amount of a pain killer may allow you to use a more tolerable dose of Mirapex.

Sent: Tuesday, February 17, 2004 7:06 AM

Subject: RLS, I think we need help, Please?

I am hoping that writing to you again will generate a reply, I'm concerned that this may not be possible as we are from the U.K, but felt it was worth another try!

I'm actually writing on behave of my 35 year old husband, Steve.

He has suffered from RLS for at least the last 15yrs but was only diagnosed by a Neurologist about 2yrs ago. Up until then our G.P had been treating him by trying to help him sleep. This resulted in him being on a final dose of Temazepam of 80mgs per night, this didn't even keep him asleep!

When we consulted with a Neurologist, he placed him on Cabaser 0.5mgs per day; at this dose my husband experienced extreme nausea and migraines so was taken off of it! He has since been placed on Sinemet. His dose has gone up over the year he's been on it. As he is being weaned from the Temazepam, his current daily medication regime is: 1 Sinemet 62.5 X3 a day along with 60mgs of
Amitriptyline and 25mgs of Diazepam at night! The weaning process is long and hard but he's getting there slowly!

Our biggest problem is that since starting the Sinemet, about 1yr ago, his mobility has been drastically reduced. He's gone from being a bricklayer to a virtual recluse. He now needs a stick to walk (we have just received a wheelchair for longer trips out!), he falls over quite a lot (especially on the stairs!), he has a noticeable weakness down his right hand side, where he also suffers hand tremors, and he walks hunched over with slightly bowed legs! Although I'm pleased to report that on the whole his RLS symptoms have gone it seems to be at a huge cost?!

My husband is finding his lack of mobility hugely difficult to cope with especially as we are parents of 4 children whose ages range from 9 to 16 years old. He is now classed as disabled & can't work!

Could the Sinemet be causing these mobility issues? Or maybe the combination of all the medications he's on? We saw a new neurologist (as his other one has left!) last week and were told there seemed to be no underlying causes for his lack mobility! The Neurologist felt it was caused by a psychological problem instead, my husband has agreed to be referred to a Clinical Psychologist just in case this is the cause, but we are not convinced! We have asked for an MRI scan, on the advice of our G.P, but we were told it wasn't necessary as it was "all in his head"! This was our "second opinion" as the Doctor who replaced his last one didn't seem to care!

We really are desperate & would love to know if you can shed any light on this distressing problem?

Regards,
Mrs. Debbie T.

A Medical Reply

I have never heard of these problems with Sinemet before except in Parkinson's disease patients (and then it is from the disease, not the medication). It may be worth a try of Mirapex or Requip although in the UK you are not allowed to drive on those medications (it is ok here in the USA).

Amitriptyline often worsens RLS so it would be a good idea to consider stopping this ASAP.

Pain killers on a regular basis may help his RLS.

Sent: Wednesday, February 18, 2004 7:58 PM

Subject: Getting real bad RLS

I have been treated for RLS for about one year but I have symptoms that are progressively getting worse.There are evenings and nights I can hardly stand it. A recent visit to a Neurologist resulted in further test, for calcium and iron levels. As well as a thyroid blood test. All this was OK.

This past year I have experimented with higher dosage of Requip, up to 1.5mg twice a day. Currently I switch between .25 Mirapex, which my doctor says is stronger then Requip so he suggested only .25mg. or .75mg of Requip at bedtime and this helps the leg sensation symptoms. The only way I can sleep is with either Temazepam or trazodone.

But what bothers me a lot more, which the medication does not seem to touch is the extreme itchy, prickly and throbbing sensation in most of my body. Lately it seems to affect my face, around the eyes as well with the same itchy, stretchy, prickly feeling. Many days my feet, particularly the instep are so painful. Most evenings close to bedtime, I take a hot bath to find relief for a little while. Just before a bath I take my sleep medication so that I can find some relief in sleep.

Should I again experiment with the dosage or be looking for something else outside of RLS.

Tony R.

A Medical Reply

The only test that is important for RLS is a serum ferritin level. If it is low (less than 45), then iron therapy may be helpful.

Requip is half as potent as Mirapex mg for mg (.25 mg of Requip = .125 mg of Mirapex). Raising the dose may help, but only trial and error can tell.

The other sensations are likely RLS related and may improve with either Neurontin or a pain killer (narcotic or Ultram).

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