Patient letters on RLS symptoms and remedies- Page 40

Subject: OxyContin

It is possible that you are getting some tolerance to OxyContin, but if that is the case, there may be cross tolerance to other narcotics such as Methadone. It still may be worth a try to change to Methadone if all else fails.

Mirapex or Requip are worth trying before changing to Methadone as the problems you had with Permax are not common with the newer Parkinson's disease medications.

Sent: Tuesday, March 19, 2002 10:49 AM

Subject: Daytime sleepiness with Mirapex

Mirapex does work extremely well for most RLS sufferers. Daytime sleepiness can be a problem, but this usually occurs at higher doses (generally over 1.5 mg per day). The starting dose that I use is .125 mg tablets (sometimes even half of these tablets if you can cut the small tablets) and only increase if necessary.

You may want to see if lowering the dose still takes care of your symptoms and eliminate your daytime sleepiness. There is a chance that with time (a few weeks) you may adjust to this side effect. If not, change to Requip and start at the lowest dose (.25 mg).

It does sound as if you are developing some tolerance to Requip. Normally we would just increase the dose but in your case you are limited by side effects. What might work is to add a narcotic and use a lower dose of Requip in combination.

For severe RLS, my drug of choice is methadone. You can also try Ultram and alternate with methadone if you wish.

Another choice would be to combine a lower dose of Requip with Neurontin, but most patients seem to have side effects (often sleepiness) with adequate doses of Neurontin.

Sent: Wednesday, March 20, 2002 8:38 AM

Thanks for your treatment for RLS. We will post it to see if others may benefit from your experience.

Sent: Friday, March 22, 2002 8:18 AM

Subject: Mirapex

Mirapex will generally work immediately. We have patients increase it slowly to avoid side effects. I have my patients increase the dose by 1/2 to one of the .125 mg tablets every 5 days if the pervious dose is not helping (see our RLS/PLMD Treatment Page for more information).

Despite Klonopin being used a lot for RLS/PLMD, it is not a drug that I like to use. It has a very long half, is addictive and causes daytime drowsiness in a high percentage of users. I prefer to prescribe Ambien instead.

Most all antidepressants may worsen RLS (although sometimes they may even help). Serzone, Wellbutrin, and Remeron may have some theoretical advantages over the others, but it does vary on an individual basis considerably. I like to wait before I prescribe an antidepressant and see if there is any depression left after I have resolved the patient's RLS and sleep problems.

A Reply from Sue

Sent: Sunday, March 24, 2002 10:46 AM

Subject: Mirapex

I'm sorry to bother you with my Mirapex problems again/ I've just started taking it, and have done it for 3 nights. My doctor gave me Klonopin to take with it.

Night 1 Before bed I took one .125 Mirapex at 9:30 PM. I couldn't go to sleep so at 10:15 I took Ambien. Woke again at 1:00 and then slept till 6:00. Felt very tired, like a hangover. Exhausted, and depressed.

Night 2 9:00 Mirapex, 10:30 Klonopin, no sleep at all, 2:00 another Klonopin. My legs didn't ache, but I just couldn't fall asleep. Woke at 6:00AM Exhausted, etc. I probably catnapped for about 4 hours.

Night 3 Took Mirapex after dinner. Bed at 9:45 no sleep-,midnight took an Ambien and also used Tiger balm as my legs were aching. The Mirapex has generally kept my legs from aching and being agitated. Probably slept about 4 hours.

I will increase my pill by half after I've gone thru 5 days. right??

I have 2 questions

1. On the info with the Mirapex it said it could cause insomnia, is that my problem ? Is it the wrong drug for me or will this problem disappear.

2. Since you suggested Ambien, when should I take it. Should I take it when I go to bed or with the Mirapex or when I wake up?.

One more question: Should I be seeing a neurologist or a sleep specialist? My current doc who is willing to learn with me is very nice and helpful. Do you know anyone in Tucson or Phoenix?

Thanks for your help.

Sue,
Tucson

Medical Reply

It sounds as if the Mirapex is taking care of your RLS problems. Mirapex should be increased only if there are persistent RLS symptoms that need to be treated.

Ambien is supposed to be taken at bedtime, just shortly before going to sleep. Some patients will take another one if they wake up at night (a maximum of 10 mg total per night), but it should not be taken too close to waking up time, or daytime drowsiness may occur.

It is possible that Mirapex is causing some insomnia, but stopping other drugs and other factors might be causing your insomnia. It is often very difficult to tell. If you are convinced that Mirapex is the problem, then possibly a change to Requip may be worth discussing with your doctor.

Any doctor can help treat your RLS, if he is willing to be educated and learn how to use the RLS medications. The best choice is a sleep specialist like myself who deals with lots of RLS cases, but as there are very few of us around, a sleep specialist, neurologist or GP who has an interest in helping should do. The RLS Foundation now has a list of doctors who will treat RLS.

A Reply from Sue

Sent: Tuesday, March 26, 2002 8:01 AM

Subject: Mirapex

I've been taking Mirapex .125 for 5 days now. It works for me, but for a limited period of time. I take it after dinner because I had read that taking it then would cut down on side effects to the stomach. It causes some queasiness for me. I wake about midnight with very sore ankles, and calves etc and have to get up and move around with difficulty going back to sleep.

If I increase the dose by 1/2 a tablet will that create a longer time for it to be effective for me--that is to be effective until at least 6:00AM. Do I continue to raise the dose until it gets me thru the night.?

In addition (I guess the above isn't the last question!!) When I take Ambien I do sleep, but I am still very tired the next day with no energy. It leaves me with a hangover.

This is a very complicated process. I'll call the Foundation today to see if they can recommend a sleep specialist to me who has dealt with RLS.

Again, many many thanks for your very helpful communications,
Sue Tucson

Medical Reply

Taking more Mirapex will both increase the effect and duration. The amount needed for each person can vary quite a lot which is why we recommend increasing the dose by 1/2 to one tablet every week to find the lowest dose which takes care of the symptoms.

Ambien does not affect most with a hangover, but decreasing the dose (taking half a tablet for example) often will correct the problem.

Sent: Friday, March 22, 2002 2:17 PM

Subject: Lost stages of sleep

Sleep in the laboratory is definitely not like sleep at home. With the strange bed, environment, and all the monitoring equipment attached some sleep disruption must occur. It is very common to see very low to no stages 3 and 4 deep sleep in patients over the age of 50 in the sleep lab. REM is often decreased somewhat also.

It is not advisable to take medications to increase stages 3 and 4 deep sleep. Drugs like Elavil (which very often worsen RLS/PLMD) were used in the past to improve deep sleep and help fibromyalgia with very limited success.

Sent: Friday, March 22, 2002 10:50 PM

Subject: RLS and BMS

I have never heard of Burning Mouth Syndrome, so I can safely say that there is no association with RLS. How Klonopin helps is certainly a wonder and you are very typical of the daytime sleepiness seen with Klonopin.

Sent: Saturday, March 23, 2002 10:54 AM

Subject: Long term affects of Sinemet

When the Sinemet dose is over 2 of the 25/100 tablets or one of the 50/200 mg tablets per day, there is a very high risk of developing augmentation and rebound of your RLS symptoms. Patients who need the higher doses of a Parkinson's disease medication are generally changed to Mirapex or Requip, which do not cause these problems (and seem to be very well tolerated in the long run) and tend to control RLS symptoms even better than Sinemet.

Your HMO drug insurance will likely not want to cover Mirapex or Requip at first, but you can "encourage" your doctor to put in a prior authorization form which will allow coverage for these drugs in the vast majority of cases.

A Reply from Elaine

Sent: Monday, March 25, 2002 10:35 AM

Subject: Re: Question about symptoms

You were very helpful with my last inquiry so I thought I might impose upon you further. I have read various descriptions of symptoms of RLS in books and on the web . Patients describe everything from a "tingling" sensation to a "crawling" feeling. Mine seems a bit different, and I wondered if you had ever heard this before, because I haven't read of anything similar.

My sensation is a very distinct, quick jolt rather like a mild electric shock in my hip flexor area and/or in my knee joint. It occurs very suddenly and continues in no particular pattern. It can wake me from sleep and often does in spite of the medication.

It can occur in either or both knees, and either or both hip flexors...sometimes alternating between the hip and the knee. I don't have the sensation in other parts of my legs. Like other RLS sufferers, I am compelled to move my legs and sometimes they jerk involuntarily as a result of the sensations. Standing up or walking around is the only alleviation.

Very truly yours,
Elaine D.

Medical Reply

The feelings that you are describing are not uncommon in RLS sufferers. Some have those sensations in addition to the more "traditional" RLS complaints.

Sent: Sunday, March 24, 2002 10:22 PM

Subject: Thank you

The problems with heroin withdrawal for most (that is all but those who happen to also have RLS) have nothing to do with the causes of RLS. Heroin and any other narcotic treat RLS very well, and when withdrawing from it, worsening of RLS would be expected.

Antihistamines, such as in Dimetapp or Dayquil will most often worsen RLS.

Sent: Tuesday, March 26, 2002 4:48 PM

Subject: RLS

Last Jan I had one knee replacement surgery. Prior to the surgery I had RLS but now it has become more severe. Is this typical? I already take Neurontin and Mirapex Is there anything more effective for use after knee replacement?

Thank you,
Margaret

Medical Reply

Surgery or any trauma to the body will often worsen RLS. Both those drugs are very good RLS drugs, but the response varies from person to person. With Mirapex, the dose may have to be increased after surgery. Narcotics will often work when other drugs fail.

Mirapex has been used successfully on an as needed basis. There is no reason why it cannot be taken about 1-2 hours before situations where RLS worsens. There are no long term problems noted with using Mirapex and sleepiness mostly occurs at higher doses (more than 12 tablets per day).

Sent: Wednesday, March 27, 2002 4:48 AM

Subject: RLS drugs and Psychiatric diseases/drugs?

Mirapex or Requip generally work best for RLS and do not interact with many drugs. Risperdal and Seroquel are both dopamine antagonists which can worsen RLS and decrease the effectiveness of Mirapex or Requip.

Benadryl and other antihistamines almost always worsen RLS, so these drugs should be avoided.

Klonopin usually works right away, so what you get at first (at any given dose) is what you will experience in the future.

Sent: Wednesday, March 27, 2002 7:05 PM

facilitate a support group and the question has come up as to the maximum amount of mg's you can safely take per day on Permax, Mirapex and Requip. Can you enlighten me on this issue? Thanks for all you do for us,

Joan W.,
South Carolina

Medical Reply

There is no official limit for any of the drugs when used for RLS, other than the upper limit when used for Parkinson's disease (which I list on my RLS Treatment Page).

Generally, when Permax exceeds about 1 to 1.5 mg per day, Mirapex exceeds 3 mg per day and Requip exceeds 6 mg per day, there is little reason to believe that higher doses will help.

Sent: Thursday, March 28, 2002 5:00 AM

Subject: Twitching legs

I sure hope you can help me. It's 5:00 am and I haven't slept all night. I've had problems in the past where my legs will start jerking really badly. It almost always happens at night.

On March 20th I had a tummy tuck done. Starting on March 25th I have felt a surge in twitching incidents. I'll be fine all day, but when I lay down to sleep at night, the spasms are uncontrollable. I'm exhausted! I've taken sleeping pills, but they don't help. It's not that I'm not sleepy, it's just that every time I think I might be able to drift off to sleep, these crawling, twitching sensations come over my legs. These sensations seem the most intense around my knees.

Please tell me what I can do? It's making recuperation from my surgery very difficult. I just can't get to sleep.

Thank you,
Erin

Medical Reply

Your symptoms are compatible with RLS. Trauma (which includes surgery) often worsens RLS. Medications such as Mirapex or Requip will help RLS in most RLS sufferers. Speak to your doctor to see if this therapy is appropriate for you.

Sent: Friday, March 29, 2002 1:46 PM

Subject: Who can treat RLS?

I have had RLS for years, and have only just recently realized that there is something I can do for these horrible symptoms. They have progressively gotten worse in the past year, and I am lucky to sleep 1 hour at a time. I was told I would need to see a neurologist for this by a coworker, but with all of the information I have read, I have every symptom described.

Can I just call a general physician with my thoughts of my condition, or should I just make an appointment with a specialist? I am a 42 year old single mother of two teenage boys and work full time for a dermatology practice, but I would like to keep my costs down as much as possible,

Please help, thanks,
Julie U.

Medical Reply

RLS can be treated successfully by a general doctor, neurologist or sleep specialist. If any of these physicians are interested in the disease and are willing to familiarize themselves with the drugs used for treatment, then they can easily take care of your problems.

The concern is that most generalists and neurologists are not familiar with RLS and do not want to take the time and energy involved to learn enough to treat the disease. Even many sleep specialists are not current on RLS and prescribe older drugs that may do more harm than good.

My suggestion is to check with your local RLS support group to get a recommendation from other RLS sufferers for a doctor who has an interest in treating RLS and has successfully treated other patients.

Sent: Saturday, March 30, 2002 5:31 AM

Subject: RLS

I have had RLS for 40 plus years. In 1995 I was glad to get Sinemet, which worked for a few short hours, if I did not eat. Approximately 3 years ago, I started Mirapex .125 (4 per day); Ultram 50 mg (3 per day) and Clonazepam .5 (2 per day) for the RLS. This was paradise. My other medicine consists of Premarin, and for about a year now, Clonidine .1 (3 per day) and recently have added Diovan (1 per day) 160 mg/12.5mg.

Two weeks ago, I got the bug others were having, starting with my left ear and gland, going to my chest with a lengthy and determined cough to the point of diarrhea and nausea. My muscles would barely let me move. One morning my blood pressure was 58/45. My pulse was high. I sat around a lot which is never good for me. I did not go to a doctor.

Like a tornado from out of nowhere, the RLS started like electric shocks with one subsiding and another one starting. What happened? What can I do?

Coretha D.
Rogersville, Al

Medical Reply

It is difficult to figure out why RLS worsens at time. Any stress to the body, such as your bad flu, may exacerbate RLS. Often it gets better with time, but for many the RLS just continues at the same level. You may also have taken medication while you were ill that could worsen RLS (antihistamines, anti-nausea agents).

When RLS worsens, it may be of benefit to increase the Mirapex dose slowly until the symptoms are controlled. You should discuss this with your doctor and you can use our RLS Treatment Page to guide him (if he needs the help) on how to increase your Mirapex dose.

Sent: Sunday, March 31, 2002 2:48 AM

Subject: Restless Leg Syndrome (Relief)

I am writing this email to hopefully help some restless leg sufferers.

My mother in law has suffered from restless leg for years and was becoming depressed at not being able to sleep etc. She also suffers from arthritis and is usually in pain. Her doctor prescribed Codiene Phosphate pain relief tablets and since taking them she has not suffered from restless leg syndrome.

It may be a coincidence but for sufferers who cannot find relief, I am sure
it is worth a try.

Dave A.

Medical Reply

Codiene is a narcotic which works well for any type of pain, including RLS. If she needs to take the medication for her arthritis and it also helps her RLS, then that would be reasonable as long as she tries to keep the narcotic dose as low as possible.

If, however, her arthritis pain can be controlled with the NSAID's (Motrin, Vioxx, Naprosyn, etc.) then a drug such as Mirapex or Requip would better serve for the treatment of RLS and avoid the use of narcotics on a routine basis.

Sent: Monday, April 01, 2002 8:01 AM

Subject: Travel Twitch!

Hopefully you can help with some suggestions. I have had RLS for the last 10 years or so and have found some relief from CARBIDOPA/L-DOPA 25 mg (Generic for SINEMET). I will be traveling to Europe next week (a 14 hour flight) and have this fear my legs will have a mind of their own. Do you have any suggestions? I will have an aisle seat so that will help.

Thank you in advance for your help!

Rich A.,
Long Beach, CA

Medical Reply

Getting an aisle seat is a very good idea. As the RLS gets worse with sitting, having the unobstructed ability to get up when you want should help considerably.

Sinemet should only be used in very low doses (no more than 2 of the 25/100 mg tablets per day) or else problems with rebound or augmentation may occur. We far prefer using Mirapex or Requip which do not have these problems.

What works for many RLS sufferers is to take an extra pill (usually of Mirapex or Requip) about 30 minutes before getting on the plane. This can be repeated 6-8 hours later if necessary. Other medications, such as narcotics or Ultram can also be taken when boarding, but they may cause some drowsiness (which may be good or bad depending on the length of the flight and the timing of the duration of the pill with when you have to be alert upon landing).

Sent: Monday, April 01, 2002 8:44 AM

Subject: RLS & Chronic Fatigue Syndrome and Super Blue or Blue Stuff

I was really excited to find your web site. I thought my mother had gone mad when she told me it felt like something was crawling around under her skin. Needless to say she does have RLS and was recently diagnosed. But, to make matters worse she also has Chronic Fatigue Syndrome which she has had for at least twelve years that I know of.

This is also something that is very hard to deal with. I wanted to let you know what she has been using that seems to take the edge off and has worked wonders for her since taking some medication is very difficult for her with also having the Chronic Fatigue.

It is called Super Blue or Blue Stuff. It is made here in Oklahoma where we live and is made with Emu oil, Aloe Vera and other stuff. This also helps with other things as well. I hope this might be helpful for someone.

If any of you have Chronic Fatigue Syndrome on top of having RLS please feel free to email me, I would be interested to know what you are doing for this or if anyone needs the address for Blue Stuff please feel free to email me.

God Bless all of you,
Lydia.... bowles5@worldnet.att.net

Medical Reply

It is not uncommon to see Chronic Fatigue Syndrome with RLS as these patients are very often very sleep deprived due to the RLS (and often from the PLMD that can cause poor quality sleep without the patient even being aware that there is a problem). Often when the RLS is treated with effective medications (usually Mirapex or Requip), the Chronic Fatigue Syndrome disappears and does not need any treatment.

Sent: Wednesday, April 03, 2002 6:25 AM

Subject: RLS

I It must have something to do with misery loving company because I got some kind of relief reading that there are people out there suffering from the same affliction.

I am 45 years old and I know I have had this since almost as long as I can remember, I have mentioned it to my doctor and I know she didn't have a clue as to what I was talking about. Although to her credit she did tell me on a subsequent visit that she did look up an article on RLS. So basically I have been left to believe that there was no choice but to suffer through this.

I will out line in point form my symptoms and other facts that may be interesting or important to someone compiling data on this condition :

1) I have a family history of RLS, particularly my maternal grandmother who I remember complaining about sleep problems and restless legs for her whole life.

2) My symptoms were magnified during pregnancy. I honestly thought I would lose my mind, especially in my second pregnancy, and I knew that even if I did want more children I would not have been able to go through that again.

3) My symptoms occur in both my arms and legs, often on one side ( left arm and left leg ) .

4) The symptoms get much worse the week prior to my period.

5) I always thought the RLS was a result of poor sleep but now I am seeing it as the cause.

6) My doctor prescribed a couple of different sleeping pills- I forget what their names are - but they were totally ineffective. My doctor is young and very, very cautious about prescribing medication. The last thing she gave me, again I forget the name, but she said it was a drug that was in the Prozac family. I tried a few and perhaps I should have given it more of a chance but it wasn't doing anything.

7) I find it is getting worse with age and I don't want to live the rest of my life like this. Finding this site is my first step in taking a more active approach to doing something about it. I don't think there is much hope in waiting for family doctors to help when they don't even know what it is.

Thanks for giving me the opportunity to talk to people who understand what I am going through, any suggestions that may help are very welcome.

Sincerely,

Pam M.
Nova Scotia

Medical Reply

You actually have a textbook case of RLS. There is a family history of the disease in 60% of sufferers, it gets worse during pregnancy (especially the third trimester), as it worsens it tends to occurs in the arms (or even other muscles in the body), and it does tend to worsen with age.

Prozac and other SSRI type drugs may help RLS, but tend to worsen more patients than they help. If you do not get relief in the first week or so, it is unlikely that you will benefit from this class of drugs.

You should speak to your doctor about starting on Requip or Mirapex (available in Canada), both of which have an excellent chance of completely relieving your RLS problems.

Sent: Wednesday, April 03, 2002 9:25 AM
Subject: Sinemet or Clonazepam for RLS?

I have read/browsed all of the e-mail on your site, and perhaps I missed any comments you may have had on Clonazepam. I am on Carb/Levo (Sinemet) and am breaking through my prescribed dosage of 1 pill at bedtime. However, the dosage is very low 25/100 mg and most nights I wind up taking half of one pill on top of the already 1 that I took at bedtime.

Another co-worker has RLS and he is on Clonazepam. I was curious if that medication is better than Carb/Levo. I was also prescribed Mirapex 0.125 mg and that one pill did absolutely nothing for me. I see you are leaning towards Mirapex and I was thinking maybe two pills at night would be better of the lower dosage Mirapex over the Carb/Levo.

Thank you for your answers,
Jean M. I.

Medical Reply

Sinemet, at the low dose that you are taking, is fine. However, you have already noted that you may need a little more and are thus approaching the maximum 2 tablets per day. I prefer using Mirapex. Most patients need between 2-6 of the .125 mg tablets per day for the Mirapex to be effective.

A Reply from Jean M.I.

Sent: Friday, April 05, 2002 5:41 AM

Subject: Mirapex

Well - - I took 3 and 1/2 tablets of Mirapex and was still awake and legs hurting until 1:00 (started at 9:30) and so I decided to heck with this I need to get some relief as I am a working gal - so I took 1/2 tablet of Carbo/Lebo and finally fell asleep. The only problem was at 5:00 this a.m. I was (and still am) very groggy and you should see the bags under my eyes. Dang.

May just try 5 pills tonight as they are the .125 dosage. Does this sound logical?

Thank you,
Jean M. I.

Medical Reply

There is a lot about clonazepam on our site under the name Klonopin. It does help the RLS a little, but the main thing it does is put RLS sufferers to sleep (just like Valium which is a similar benzodiazepine) thus eliminating the RLS. It tends to cause daytime sleepiness and addiction/tolerance which is why I do not like the drug.

Mirapex is generally increased by 1/2 to one pill every 3-5 days to assure no side effects. It is quite puzzling that the dose of Mirapex you are taking is not sufficient to resolve your RLS discomfort. Most RLS sufferers find that the medication works better if taken 1-2 hours before the onset of the RLS symptoms.

Sent: Wednesday, April 03, 2002 1:20 PM

Subject: Drug interactions

Would like to know the interaction of Mirapex with Allegra and Mirapex with Zyrtec. I read somewhere that Zyrtec caused the symptoms of RLS to worsen.

Medical Reply

All antihistamines tend to worsen RLS. This can be somewhat variable with some RLS sufferers having very little problem. The newer antihistamines (Zyrtec, Allegra, Claritin and the newest one, Clarinex) do not cross into the brain and have less of a tendency to worsen RLS. I have many RLS sufferers who can take these newer drugs, but many others cannot.

Sent: Wednesday, April 03, 2002 2:16 PM

Subject: Mirapex (see previous letters above Friday, March 22, 2002 8:18 AM)

I have taken Mirapex for 13 days. I now take 2 each night..

Problems:

During the night I have pain in my calves, ankles, and hips which wakes me and then I have big difficulty returning to sleep. I have added Advil, but with little success. The agitation of the RLS is not there, but the pain makes me need to move my legs and keeps me awake.

When I'm awake in the wee hours of the morning my legs are tense, not relaxed. nor is my body relaxed. Thus with the pain, and tenseness of the legs I have a difficult time getting to sleep. My stomach is also upset. Does Mirapex do anything for pain, or does it increase it.
Previously I was on OxyContin, and I slept better. I didn't have as much pain, and when awake at the end of the night my legs were relaxed and comfy. Periodically I would have a bad night, but not like now. Did the OxyContin suppress the pain?

I stopped OxyContin after 2 years because it ceased to work. Even though I took drug holidays every 2 weeks I was very happy with the results of the OxyContin.

I'm discouraged with Mirapex because it reminds me of Permax which I couldn't t continue with due to similar symptoms. Lack of sleep is such a problem You had suggested Requip if I continue to have insomnia. Is it that much different from the Mirapex and Permax so that it might work better for me. What would the pill routine be.

Or am I gearing up to Methadone? (or maybe back to OxyContin since I've had a months break from it--what do you think???)

Again much gratefulness for your knowledge and patience.

Sue in Tucson

Medical Reply

Although the 2 tablets of Mirapex are helping the restlessness, it is quite possible that the residual pain that makes you want to move your leg is still part of your RLS. What I generally do for this, is to increase the Mirapex.

If Mirapex is causing side effects at your current dose or with higher doses, then Requip would be a consideration. Each of the 3 dopamine agonists available (Permax, Mirapex, & Requip) are somewhat similar, but the side effect profiles can vary considerably and it often takes trial and error to see if they are better or worse.

Adding a narcotic (with drug holidays or alternating with the non-narcotic Ultram) is often a good choice. Methadone is a drug that I have found quite effective for my severe cases. Milder cases will often respond to the weaker narcotics such as Darvon.

Sent: Wednesday, April 03, 2002 3:05 PM

Subject: Typical Symptoms

I have the usual symptoms described by many others here, except that the "pain" as it were is mostly in my arms. I do however suffer with the need to move my legs, especially while watching television at night. The worst part for me, though, is trying to sleep with that "creepy" feeling in my arms.

I have tried lying on top of them either face up or face down, twisting them around each other to put isometric pressure on them, but to no avail. Sometimes my legs feel the same way while sleeping. I work as a copier technician, so I know all the moving, lifting, twisting, kneeling, screwing and unscrewing of screws, etc, is not good for me.

About two years ago, I had hurt my back lifting a copier, and was given Ultram for the pain. It was like God had granted me mercy! I was able to finally get comfortable and get to sleep. It wasn't a drowsy feeling, or a doped feeling, just a "lack" of feeling the creeps. I told him about it, and he prescribed me Ultram at 2 pills at night before bed (100mg.). That has worked beautifully for me.

However, I had to move to Tallahassee, and I got a new doctor (the only one that was taking new patients on my health plan) who feels that Ultram is too addictive, and prescribed me Klonopin instead (from what I have read, it is Klonopin which is addictive, not Ultram). Klonopin may work for others, but all it does is turns me into a moody zombie, especially at work the next day. I told her about my experiences and asked if she would put me back on the Ultram which works, but she does not want to do so.

What other options do I have (besides getting a new doctor, which I cannot)? By that, I mean what other drugs are considered "non-addictive" that would work that she might be agreeable with? Any suggestions would be greatly appreciated.

Jim.

Medical Reply

Ultram does have a small addictive potential, but if used carefully (just enough to relieve the RLS symptoms) it will rarely cause addiction in RLS sufferers (unlike pain patients who may have a higher potential for addiction with Ultram and even narcotics).

Klonopin is a much more addictive drug, but doctors are much more familiar with this very old drug. As you can see from my responses to most letters, it is not a drug I recommend for RLS.

The best treatment for RLS is Mirapex or Requip. Most doctors (especially in HMO plans) will not be familiar with or want to write these drugs even though they are much safer and much more effective than most of the other drugs used for RLS. You will likely not need Ultram while on Mirapex or Requip.

If the doctors in your system do not want to write these drugs, you have a right to demand that they do so and render you the best up to date treatment. If often takes a little work, but after a referral or two to a neurologist or sleep specialist you should be able to get the correct treatment.

Sent: Wednesday, April 03, 2002 5:56 PM

Subject: Notriptyline Withdrawal and RLS

I have suffered from RLS intermittently for all of my adult life. Typically I can manage it by taking ibuprofen or using an analgesic on my legs. I have taken nortiptyline for anxiety for about 7 years. Recently I have come off of it and my RLS has kicked in big time. I'm lucky if I sleep 2 hours a night and that is with the help of Ambien.

Is there a relationship between withdrawing from the nortiptyline and RLS - there's got to be. How long can I expect this to last. It's been 2 weeks now and I'm exhausted. I went from 50mg a day of nortiptyline. in the fall to 25 mg. a day. Have been on that dosage since October.

Two weeks ago I decided to go cold turkey and stopped the nortiptyline completely. I thought since I was on such a low dosage that I wouldn't have major side effects. The good news is that my anxiety has been manageable but the RLS is out of control. So, I'm simply curious about the relationship between withdrawing from the nortiptyline. and my RLS. Any feedback would be greatly appreciated.

Cindy

Medical Reply

Interesting enough, nortiptyline is a tricyclic antidepressant that usually worsens RLS. A minority of RLS sufferers have noted improvement of RLS with this drug. Part of its effect may be that it is quite sedating, so that if taken alone (or in combination with a sleeping pill such as Ambien), it will put the patient to sleep (which of course resolves the RLS).

A better choice is Mirapex or Requip which generally resolve the RLS symptoms at low dose.

Sent: Friday, April 05, 2002 7:00 PM

Subject: PLMD worsened with treatment

It is quite likely that your neurologist prescribed Nortriptyline to help you sleep at night (it has a sedating side effect) and for its general benefit of reducing pain (which is common to many of the tricyclic antidepressants). The tricyclic antidepressants, however, commonly make RLS worse.

You may want to discuss getting off of Nortriptyline and perhaps substituting Neurontin which is good for pain syndromes and also has the benefit of helping RLS.

Sent: Sunday, April 07, 2002 4:49 PM

Subject: Terrible resurgence of RLS

I have had RLS for more than 10 years. I'm 62 years old. I also suffer from CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) which I understand can be related to RLS symptoms. I have been fortunate in that early on 2 Tylenol #4's knocked it out. Believe me I had a terrible case of it before we landed on Tylenol #4. Two weeks in the hospital without any sleep. I walked the halls all night. The nurses thought I was some kind of nut case. I've been through allot over these past ten or so years, but I won't bore you with my plight with RLS and CIDP.

The past couple of years I supplemented Tylenol # 4 with Mirapex and that worked fine. What I discovered was that it made Tylenol #4 less effective. However, that was ok since it controlled the RLS pretty good. I've been pretty lucky.

Now I need some help big time. In the past couple of months I have gotten worse. It is almost as bad as when I first got hit with it years ago. Typically I am up all night in great agony. It's in both my legs; my feet go numb on thick pins and needles. It is in my arms, also. I now have it all day and night to varying degrees. I have had to turn into a recluse because it is so overwhelming.

I have a number or other neuro-muscular complaints but I don't want to overkill my request. Something set it off again I'm sure, possibly a medication. I was prescribed 12.5 mg of hydrochlorthiazide for high blood pressure. Could the thiazide portion of this have kick it off even after I stopped taking it, realizing it might be the problem. Also, I was switched to Celebrex for arthritis. The RLS really got worse after starting this medication. I'm going to stop taking this drug tonight. I also take Diovan, 180 mg.

Are any of these medications, in your experience the culprit for kicking off this new terrible case of RLS?

Thanks for your help. I have been a member of the RLS Foundation since 1994. It's a great program.

Sincerely,

Mike G.

Medical Reply

RLS does get worse as one gets older, so that may explain some of the reason for your RLS getting more severe (rather than the effect of Mirapex on Tylenol # 4 or on RLS).

There is no known interaction of RLS with the blood pressure or arthritis medications that you are taking.

As RLS gets worse, it is often beneficial to increase the dose of Mirapex. Also, methadone tends to work better for RLS than codeine (and the Tylenol portion does not help RLS and can thus only adds the potential for side effects). The combination of the higher doses of Mirapex and methadone generally can take care of even the most severe cases of RLS.

Sent: Tuesday, April 09, 2002 5:08 AM

Subject: weight gain

I am 43 years old and have suffered from RLS since my teens (as have my late father and my sister). For the last 5 years I have taken medication and I wonder if these pills have anything to do with my weight gain.

Before I took the medication I took a combination of magnesium/phosphate which helped for a long time when the symptoms were not so bad. I have been on Sinemet but stopped due to the fact that within 15 minutes of me taken it I was violently sick. I tried Pergolide and changed now to Madopar 62.5 in the afternoon and Mirapex (or pramipexole).

My symptoms worsened after I was diagnosed with cervical cancer and had to have radiotherapy and HRT. According to the doctor the HRT has nothing to do with my weight gain.

I have been on so many diets and I will lose 2.5kg and than it stops.

Any ideas on this????

Madeleine from England

Medical Reply

Weight gain is usually not associated with Mirapex (pramipexole). It is likely the weight gain has more to do with decreased activity since your diagnosis of cervical cancer or some other problem.

Sent: Wednesday, April 10, 2002 4:17 PM

Subject: Permax and Ultram

I have had RLS most of my life. As far back as I can remember, I was always being chastised for being "fidgety" and for not being able to sit still. The symptoms waxed and waned over the years, getting worse when I was pregnant, then getting better in my 30s and 40s. I am now 59 and the symptoms have gradually and progressively gotten worse to a point where I walk around in a fog from lack of sleep most of the time.

My other health problems include hypertension, osteoarthritis, chronic fatigue syndrome, for which I take atenolol, Accupril, Celebrex, Zoloft, and occasionally cyclobenzaprine for fibromyalgia. My doctor recently started me on Permax for the RLS which seems to be working. I take that twice a day (once in the afternoon and once about 2 hours before bedtime).

I work as a medical transcriptionist, so I am sitting at a computer for 8 hours a day which can be PURE TORTURE when my legs are acting up. I have tried Sinemet in the past but that did not help. My doctor gave me a prescription for Ultracet as well. I took 1/2 of 1 pill and a short time later was nauseated and had vertigo.

I suspect I am allergic to it but I also had a sinus infection at the time. Now I am afraid to try it again for fear I will have the same reaction. Is there an alternative drug to Ultram (I believe I am allergic to codeine having experienced nausea from it in the past after dental surgery).

Diane/Florida

Medical Reply

If Permax is working well, then you might want to discuss increasing the dose with your doctor in order that it alone will control your RLS and eliminate the need for other medications. Mirapex and Requip work better than Permax (for most) and tend to have fewer side effects.

Sent: Sunday, April 14, 2002 6:52 PM

Subject: RLS

I've just finished reading your site, fantastic! Please can you give me some advice on Permax which I am taking for RLS. I am 35 years old and both my sons have been unfortunate in inheriting this cruel disorder.

I have had RLS for ever. I can recall being a very young child and it was referred to as growing pains. As I got older and the symptoms persisted the name changed to rheumatics. Reading your site, you refer to Mirapex and Requip but not so much Permax which I am on. Can you please tell me why?

I started on 0.05 x 5 days, then 0.10 x 5 days, then 0.15 x 5 days etc. I have just started taking 0.20 mg per night. I feel fantastic already, I am so excited to have no symptoms at all. Do I still follow the prescription and keep increasing the dose until I reach 1mg or do I stop now at 0.2?

My symptoms were so bad, the neurologist said I had one of the worst cases he had ever seen, so why have I responded so quickly? (I am so excited and I feel like I have my sanity back, but at the same time I feel like a fake!)

Will I always have to take Permax for my RLS or will this drug make it go away?

Why do you refer to Mirapex and Requip heaps more than Permax, is there something about this drug that you don't like?

My two main side effects at this stage are: very queasy sick stomach (relieved somewhat by Domperidone 10mg). Horrible taste in my mouth, almost like tin.

Thanks for your time,

Nicky

Wellington, New Zealand

Medical Reply

I used to prescribe Permax a lot several years ago with very good results except that it tends to side effects (such as the nausea that you have experienced and we do not have Domperidone in the USA). The newer dopamine agonists (Mirapex and Requip) work somewhat better than Permax and have fewer side effects which is why I recommend them more often.

If Permax is working well then there is no reason to considering changing to the newer drugs. We generally try to keep the dose of any RLS drug at the lowest dose that eliminates the RLS symptoms. RLS is a life-long condition, so it is likely that you will need to take medication for life unless a true cure is found for the disease.

Sent: Tuesday, April 16, 2002 3:34 PM

Subject: RLS

I was recently diagnosed with RLS. My doctor immediately prescribed Quinine just from listening to my symptoms over the phone. Now I read on the RLS web-site that this is NOT a good drug to take for RLS.

I was so desperate the first few nights that I took the medication and it helped. However, while that was just one week ago, the symptoms have returned and I have them during the day, as well.

I am going to see my doctor next Tuesday. I read on the web-site that many doctors do not know enough about this "syndrome" to prescribe the proper medication. I would like to know what I need to do to possible educate him in that short time I am at his office to enable him to really help me. Because this hurts and I am losing sleep!

Anything you suggest will be very much appreciated. I will also read more of the web-site to get more knowledge on the subject. Oh yeah, one more thing, is this going to be with me for the rest of my life?

Sincerely,
Pamela

Medical Reply

Unfortunately, RLS is usually a life-long problem (with rare exceptions). It is often difficult to get proper treatment from most doctors for RLS as the medications used are not approved for this condition and in addition, most doctors are not very familiar with them.

The best way to educate your doctor is to bring information from the internet. Our site has lots of information but you can obtain even more "official" information from the RLS Foundation's website. In addition, you can get pamphlets from the NIH that are meant to educate general doctors about RLS (check out our Links to other Sleep Sites).

Sent: Tuesday, April 16, 2002 7:29 PM

Subject: Nice to have found this website.

I'm 48 years old and have suffered from RLS since my early forties. It was never much of an inconvenience till recently. Last September I started taking anti-depressants, and ever since then, it's gotten so bad my husband and I can't sleep together anymore. I can still get a pretty good night's sleep, but he says I move around so much he has to sleep somewhere else. When we do try to sleep together, I can feel him getting angry, and it makes me nervous, and then I can't relax at all.

I stopped taking anti-depressants about a week ago, hoping it would improve my RLS, but so far it hasn't changed it much. Anyway, it was nice to find this website and to know there are others out there who are going through the same thing.

Keep up the good work,
Restless in Portland

Medical Reply

RLS can be treated quite easily with some of the newer medications (Requip and Mirapex). It takes care of the RLS discomfort and will very often relieve the PLMD that causes movement in bed at night (and may also be responsible for poor sleep quality and daytime fatigue).

Antidepressant medication of the SSRI class can worsen or sometimes even help RLS.

Sent: Thursday, April 18, 2002 3:53 PM

Subject: Help! I'm having "withdrawal" symptoms from Sinemet

I just discovered your web sight. I am so happy to find information to educate myself about my problem of RLS. I received absolutely no information from my doctor, other than I do have it. I get the feeling he is not that well informed about how to treat this. To date I have been on Sinemet for a few years, and my symptoms were initially controlled with this drug. But gradually they worsened, eventually they began to return in the middle about 4:00 in the morning. So my doctor tried a timed release version of Sinemet, which REALLY didn't work.

So back on my original rx. I was put, with an additional dose in the middle of the night. That worked for a while, but later the symptoms started earlier in the evening, 7:00 pm or so. Again I took an additional pill then to get through the evening. Well, after not too long after going to sleep an hour or so, the symptoms would return and wake me up about 12:00. Another pill to be able to go back to sleep was needed. Then within a few weeks of this increase in the dosage, I would wake up AGAIN in yet another hour at 1:00 or so.

Well, I had no idea why this was happening and was now scared to death at the amount of medicine I was taking, yet it didn't control the symptoms. I went to my doctor several different times while this was developing and got no advise which was of help. The latest discussion with him was a few days ago and the gist was that I get off the Sinemet altogether- cold turkey and take 1 Clonazepam instead.

Well, I did that exactly one night & that night was a nightmare to but it mildly. It was unbelievable, I had never experienced symptoms so severe and intense like this before, and all the while I was so groggy and dazed from the Clonazepam, yet could not even sit down, much less lay down to try to sleep.

I called my doctor first thing next morning, almost hysterical, begging for help. I sensed they were beginning to view me as a "crank". I asked if I shouldn't "wean" myself off the Sinemet gradually to cut down on symptoms, while gradually replacing it with another medication to lesson the terrible "withdrawal". My doctor said; "NO! Just stop the Sinemet cold turkey and he would call in an new rx: Neurontin 300mg, take 1 capsule at bedtime".

The pharmacist said it would take a few weeks for this new drug to become effective. Needless to say I said:" FORGET IT!" and took a reduced dose of the Sinemet with the Clonazepam. I'm now trying to get more informed via your website and feel there should be a way to lesson the withdrawal I'm experiencing. I feel like I'm going to have to do this myself, as my doctor doesn't seem to have any experience in this.

I am trying to get into a sleep disorder center, but the nearest available appointment is in July. I can't wait that long for relief. I feel like my doctor is resenting me suggesting to him any options which I've read on the internet, and I sure don't know what to do by myself.

Can anyone suggest something I can do while I'm waiting to be seen in July? Is this a common problem? If so, how does one withdraw Sinemet with the least amount of problems? Can I cut back on Sinemet WHILE gradually introducing the Neurontin without adverse effects? I read you could do that with Permax, would it work with the Neurontin? Are there better options available out there? I'm feeling very abandoned and alone with this. Any suggestions?

I thank you in advance for any advise you can offer,
Barbara H.

Medical Reply

When the dose of Sinemet exceeds 2 of the 25/100 tablets per day, there is a very high likelihood of developing augmentation (worsening and earlier RLS symptoms) and rebound (RLS recurs as the dose wears off). This is what has happened to you.

We find that the best drugs to substitute for Sinemet are Mirapex or Requip (better than the older Permax). These can be increased as the Sinemet is decreased and this should take care of your RLS complaints (without causing augmentation or rebound). This is very simple to do, but most doctors are not familiar with these drugs and have no idea how to use them for RLS.

There is no benefit from going to a sleep center unless you can find a doctor there who is able and willing to treat RLS with either Mirapex or Requip.

Sent: Friday, April 19, 2002 4:35 AM

Subject: Lifelong RLS

I am a 55 year old female who has had RLS for about 10 years. Mine is the inherited type and now I know what my grandfather and aunt meant when they said they had the "fidgets". I am wondering if there will ever be a time when I do not have this disorder. My neurologist says I may in a few years no longer have the symptoms. My "fidgets" aunt is still alive and no longer suffers with the disease.

I started with Sinemet 18 months ago and it worked fine until the rebound got unbearable. Now I take .0125 mg of Mirapex three times a day and the symptoms are totally masked. Do you think that I may become used to the Mirapex and eventually have to move up to stronger and stronger medications?

The thought of gradually using more and stronger drugs is depressing in itself. I hate the idea of needing narcotics and opiates just to get some relief!!! Facing the rest of my life with mind numbing drugs will be hard to do. Please tell me there is a chance that the RLS may go away.!!!!!

Thanks for your response and all the help you give so many on this internet site,
Carol

Medical Reply

Although your aunt no longer suffers from the "fidgets", she is the exception, not the rule. Most RLS sufferers get worse as they get older with rare exceptions like your aunt.

A very small percentage of people get tolerant to Mirapex (15%??), but most who increase the dose over time do so because their RLS disease has worsened with time. The good news is that despite needing medication, most (if not all) RLS patients can be controlled with medication and if the drugs are given properly, the side effects of taking the medication should be negligible (including narcotics).

Sent: Friday, April 19, 2002 3:15 PM

Subject: RLS worse after a virus?

I am 42 years old and have had RLS since I was a child. However it would only occur when I would try to sleep in a car, then only very very occasionally. As I got older it would bother me at night before sleeping, but only maybe once or twice a year. I don't remember it bothering me at all from my late twenties until December of 99.

I caught what the doctors called a virus, I don't know what it was called. It took 5 months to get over and I was really tired for the last 3 of them. During my recovery, I started getting numb from just below my chest to my toes, my hands also went numb. It took months to get my sensation back, although my feet and the little finger and ring finger on my right hand are still numb. I also have lost the ability to feel heat in my feet and am hyper sensitive to cold in both hands and feet in that when I get cold, my hands and feet feel like they are on fire.

Also since I had this "virus" I have RLS at least 1 or 2 times a week, sometimes more. I also have leg twitching in my left leg when I sleep, or as I am drifting off, the twitches always come in threes, sometimes very violent (according to my wife). I am glad I found this web sight because I haven't even had a name for what is bothering me. I also wake up in the middle of the night, completely wide awake, 6 hrs of sleep is a distant memory.

Also within the last couple of months I have been feeling more and more fatigued, particularly in my legs. I don't know why I sent this other than to share with people that I don't have to try and describe the feeling of RLS to, or the frustration of dealing with it. The only thing I have ever done to try to alleviate it is to tense the muscles from my waist down and hold it as long as I can, I do this 2 or 3 times.

Thanks for your time,

Keith H.,

Indianapolis, In.

Medical Reply

You do not have to suffer as there are lots of good RLS medications available. You can take Mirapex or Requip to prevent the RLS symptoms and PLMD (leg jerking) and sleep much better and feel rested during the daytime. Ask your doctor for treatment and end your problems.

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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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