Patient letters on RLS symptoms and remedies- Page 86

Sent: Monday, April 20, 2009 8:33 PM
Subject: Re: Sleep RLS Questions

I have experimented with reducing my gabapentin (to around 600- 900 mg) and adding Lyrica (about 800 mg). I continue to take 22.5 mg of temazepam. The combination is a definite improvement. Gabapentin seemed to make me a bit irritable and sleepy during the day. I also fall asleep a bit faster and sleep better with the added Lyrica.

What is your experience with Lyrica ? What is a "typical" dose range for Lyrica ? I am aware my gabapentin and temazepam will have an influence on Lyrica dosing. I am just looking for a general clinical range for Lyrica.

Steve M.

Medical Reply

The usual dose range of Lyrica when used for RLS is 75 to 150 mg twice daily. Of course, higher doses can be used for those who are tolerating 300 mg daily but need more relief. The same is true when the drug is used for shingles pain and other approved disorders. However, doses above 600 mg have not really been studied (most patients did not do better even with the 600 mg dose) and are therefore not recommended.

Sent: Thursday, April 23, 2009 10:30 AM
Subject: RLS and Loestrin Fe

I was recently put on Loestrin Fe for heavy menstrual cycles. I have noticed that since taking it my RLS has become more frequent. I was wondering if you have heard if Loestrin aggravates RLS. I have never taken anything for the RLS except magnesium/iron.

KP

Medical Reply

Hormones are known to affect RLS. However, some people improve while others worsen. You may need treatment for your RLS which includes the FDA approved drugs, Mirapex and Requip.

Sent: Friday, April 24, 2009 3:29 AM
Subject: Re: RLS HELP!

Several years ago, I found this site at the time I was desperate for help with severe RLS. I truly believe it saved my life. I was able to get personal help with the RLS. I take 1/2 mg of Mirapex at night and sometimes during the day when I try to take a nap and the RLS starts. I can only take 1/2 of a Mirapex, because a whole one makes me wake up in the morning with a headache from hell. I was advised to take a narcotic with the 1/2 Mirapex, and it works.

The last 4 years I have had severe pain in my knee...non-stop...24/7. I was given a wrong diagnosis and thought I was headed for knee replacement. My primary care doctor moved & I had to find a new one. After a year of giving me Lortab for the pain, he said no more. Of course taking Lortab for pain helped the RLS also. I was ready for the knee replacement, but when I saw a different surgeon than the one who gave the diagnosis , he said I did not need it.

After seeing 5 more doctors in 4 months, one ordered an MRI in my back. I have a pinched nerve between L4 & L5, which was causing my knee pain. I have had 2 spinal injections in my back and it has helped the knee pain greatly. However, I am having back pain now. The Pain Management Clinic I am getting the injections at won't give pain pills until they deplete every other option. My PCP wrote me one more scrip for Lortab, but said no more. I have tried to explain to him I need enough to take at bedtime, just a half of one usually works, but he still said no. I told him RLS is torture, I would rather have pain if I had the choice. It even gets in my shoulders at times.

He won't budge. I said all that to get to this. When this Lortab scrip runs out, what do I do? I can't go back to walking the floor every night, even falling asleep while walking and waking up when I run into something. I am desperate, knowing I cannot go back to that. I am a 66 year old woman, with pain and depression.

If I have to add RLS symptoms to that, I'm afraid life won't be worth living. I can't take Requip, it rebounds. I don't know where else to turn. My PCP has never had it, so he doesn't understand the torture is.

Faye C.

Medical Reply

Another choice might be to add Neurontin (gabapentin) or Lyrica in the evening and that may take care of your RLS problems without needing pain pills. However, if that does not work, then adding an opioid or tramadol (somewhat safer than the opioid and often as effective) is a very reasonable and effective treatment for your RLS.

If your doctor does not want to treat you with these medications, you can bring in one (or more) of my books on RLS (see my homepage for these books) and bring them to your doctor (you can even highlight the section of using opioids for RLS). If you doctor still does not want to treat your RLS properly with opioids, then either get a referral to a specialist who can treat your adequately or find a new doctor (quickly).

Sent: Saturday, April 25, 2009 11:05 AM
Subject: Epidural shots worsen RLS?

I have been getting epidural shots in my low back for pain in my back/legs for quite some time. It appears to make the RLS, which I have had since I was a teenager, worse. (I am now 89). I take Requip and am having to double the dose to get any relief at all. The pain management doctor doesn't know what to think about it.

He adds a immediate pain medication to give me instant relief, perhaps that is the cause?

Lola S.

Medical Reply

Typically, epidural shots should not affect RLS but of course, anything is possible (and we have heard similar stories). It may be helpful to check your serum ferritin level (a sensitive test for iron deficiency even when all the other tests are normal) and make sure that it is close to 50. If not, then iron therapy may be helpful.

Pain pills do not worsen RLS but rather relieve RLS symptoms.

Sent: Saturday, April 25, 2009 7:48 PM
Subject: RE: medication regime

My GP was happy to follow your advices and so my regime for the last 3 months has been more or less as follows:

9am .5 Requip
4pm 1 mg Requip and one 50mg tramadol
9 pm 1 mg Requip and one 50 mg tramadol
sometimes at around 11 pm I have to take another tramadol 50mg.
3am .5 Requip
This totals 3mg Requip and 100mg (sometimes 150mg) tramadol daily.

With this regime I am still getting breakthrough, and had to go walkabout this evening at around 9.30pm (whilst in a restaurant), walkabout again at around 1am, and now at 3.30 am, I am up and about again, after about one hour's sleep (which was following an Ambien at 1 am). I find that certainly any relief would not last the length of 8 hourly doses, and in particular wonder why medications from my 4pm and 9pm regime is not sufficient to stop breakthrough.

I also note that my arm rls symptoms are more frequent and occurring now on a nightly basis, indeed sometimes my 24/7 legs have been quieted by the medication and I have to still get up because of my arms. This is different, I always would have had an element of arm symptoms but recently they are as bad as the legs. At the moment I am exhausted because I rarely get more than 5 hours (broken) sleep each night.

Interestingly, I find that the tramadol does not seem to have any beneficial affect on my painful neck and shoulder/ hips etc.

Betty R.

Medical Reply

It sounds like you are developing augmentation from the Requip (your RLS is actually getting worse from taking Requip which causes the RLS to occur with more intensity, earlier in the day and travel to other body parts). Unfortunately, the treatment for this problem is to stop the Requip. You will then need to change to a potent opioid (oxycodone or methadone) and take this up to 3 times daily as needed. You may also need to stay on this medication (likely at a lower dose after an initial 2 week period) indefinitely.

A Reply from Betty R.

Sent: Monday, April 27, 2009 4:34 AM
Subject: RE: medication regime

What would be the starting dose of oxycodone or methadone to cover withdrawal of the Requip. I ask this as guidance for my doctor who in the past appears willing to consult with the Mayo Algorithm and your email responses.

Also, in the event that my doctor would have an issue with prescribing oxycodone or methadone what would you suggest in the alternative.

Betty R.

Medical Reply

Typically, we start at 5 mg of either drug. You can always start lower (at ½ of a 5 mg tablet) but most need a higher dose. You can tell your doctor that this advice comes from one of the authors of the Mayo Clinic’s RLS Algorithm.

If he still does not want to use those drugs, then hydrocodone (Vicodin, Norco, Lortab) are less potent back-up choices.

A Reply from Betty R.

Sent: Tuesday, April 28, 2009 1:17 PM
Subject: RE: medication regime

My doctor is investigating at the moment with x-rays and blood tests with regard to my constant (years) shoulder/neck pain and ongoing nausea (18 months) and is considering a disc or cervical spine arthritis. However, for whatever reason, my nausea is quite ongoing and even though I take 20mg omeprazole. Today he prescribed Domperidone 10mg x 3 times daily.

Upon Googling this drug it appears to be a dopamine agonist, and indeed I saw where it had been used for RLS.
Based on my current RLS medication of 3mg Requip over 24 hours and 2 or 3 pills of 50mg tramadol over 24 hours, if I take this domperidone, is this a further dose of a DA on top of my Requip. And is this wise? i.e. too much of a DA.

I apologize if I appear to be questioning my GP, he is very helpful and considerate, but is not very familiar with RLS, indeed he and I are working together as best we can and using the Algorithm.

I have not yet taken any of the domperidone whilst I try to confirm its validity.

Betty R.

Medical Reply

You have your information about Domperidone backwards. It is a dopamine blocking drug and therefore has the potential to worsen RLS. However, as it does not cross into the brain (where it could cause RLS problems), it only acts outside the brain and thus is safe to use in RLS patients.

Sent: Monday, April 27, 2009 7:44 PM
Subject: Mirapex

i was prescribed a .25 mg tablet at bed time about 8 months ago, i found out about some of the side effects roughly 6-8 weeks ago. (stiff muscles, weakness in the limbs, instability, being tight in my muscles) i stopped taking the pill 3 weeks ago, how long would it take for these to regress and/or go away

Roger H.

Medical Reply

Side effects typically resolve in about 3-7 days. Any symptoms that persist beyond that time are most likely due to some other problem.

Sent: Tuesday, April 28, 2009 10:35 PM
Subject: What should I do?

My RLS is constant throughout the day, but it gets worse at night. My ferritin level is normal. I have already tried Mirapex, Requip, carbamazepine and Klonopin with no help from them. I lowered my gabapentin dosage because of the drowsiness.

I'm currently on Percocet 7.5 (3 times a day), tramadol 50mg (3 times a day), gabapentin 1200mg (before bedtime) and Requip XL 4mg (before bedtime).

Percocet does not last as long as I would like (3-4 hours) and tramadol by itself doesn’t seem to have much of an effect. I'm not sure if the gabapentin is doing much, it helped a bit at 900mg 3 times a day. I'm not sure about the Requip either, considering it didn’t work the first time.

I do not have enough Percocet to last me through the day and my doctor won't prescribe me more. I'm getting very frustrated.

What would be your recommendation? Is there another medication that could benefit me?

Chris T.

Medical Reply

It is difficult to advise you based only upon the information that you have given (and it not really the purpose of this website to give patients specific advice without a real face to face consultation). Your case is complicated and you may actually need a cocktail that contains other drugs.

Other choices include Lyrica instead of gabapentin and perhaps methadone instead of oxycodone (Percocet).

Sent: Wednesday, April 29, 2009 11:05 AM
Subject: Serum Ferritin = 34

I recently saw a sleep specialist for my RLS, he ordered some blood work and a sleep study. I had the sleep study last night but don’t know the results, it will take another 2 weeks to find out. Yesterday I got a copy of my blood work from the lab, I have not discussed it with the doctor yet. Everything was normal except the serum ferritin was 34, which is within normal limits but from what I see on the ‘net for RLS sufferers it should be above 50.

Right now my RLS is fairly well controlled with Requip I get from my psychiatrist, but I have other symptoms such as tinnitus and fatigue that I read may be caused by low iron. My question is, do you think it is wise to start supplementing iron right away or should I wait a few weeks until I see the sleep doctor?

I was really excited to read of a possible connection between tinnitus and low ferritin, the tinnitus drives me crazy and I’m anxious to start something that might help it. On the other hand I have IBS and am wary of what the iron supplements will do to my gut, plus I feel the SSRI I take is the main culprit with my RLS, so maybe the iron wouldn’t be such a good idea.

Andrea S.

Medical Reply

You are correct that although the normal lab value for ferritin is above 10-20, we really like to get it above 50. You may benefit from supplemental iron however it is very hard to increase iron levels the closer the serum ferritin levels get to 50 (typically, once you get in the 30’s, it is hard to increase levels with oral iron).

You should never start iron therapy without checking with your doctor who should then monitor your iron and ferritin levels.

Sent: Thursday, April 30, 2009 6:23 AM
Subject: worsening RLS in arms and legs

I am a 49 year old female who has had RLS since childhood. Although I didn’t know what to call it then. I would just always tell my parents, “I have those “things” in my legs again.” It was particularly bad when sitting in the back seat of the car during long trips. My RLS has worsened with age.

Several months ago I spoke about my condition with my doctor and he put me on Mirapex. It worked great for a while then it didn’t seem to help any more. He suggested taking 3 pills in the evening instead of 2. (I am writing this at work so I do not have the bottle to check the mg.) Now, even 3 pills don’t seem to help much and I cannot sleep. Even on the nights when the RLS is somewhat OK, I still cannot sleep well. HELP!!! What should I do?

Linda
Springfield, Ohio

Medical Reply

You may be developing some tolerance to Mirapex or other factors (such as drugs, stress, etc.) may be worsening your RLS thus making you need more medication.

Your choices now include adding or changing to opioids or anticonvulsant drugs.

Sent: Friday, May 01, 2009 12:31 PM
Subject: RLS better with leg cuffs?

Is there anything to these pulsating cuffs you put around your legs for RLS? It seems I've heard something about it, but it was a while ago and don't remember much about it. I have to take more and more Neurontin and Lyrica and am concerned about that. Thank you.

Irene O.

Medical Reply

There has been a recent study that was published demonstrating some effectiveness of sequential compression devices for treating RLS. Another previous study did not show this device to be that effective. The jury is not yet out on whether this will become an accepted treatment for RLS and at this time it is quite expensive and needs a prescription from a doctor.

Sent: Sunday, May 03, 2009 9:38 AM
Subject: RLS and hydrocodone?

I suffer from big-time RLS mainly in my torso area and sometimes in my legs and arms. My doctor had prescribed me Restoril (temazepam) which sort of works if I take like 2 at night, but I'm usually out of it before I'm suppose to be and it can be expensive purchasing these pills at the hospital pharmacy. I find that taking my mind off of it by focusing on pleasant thoughts or making laughter with my friends often relieves it.

Each day I awake at 3 or 4 in the morning with extreme RLS to the point where I would probably go insane if I were to be still. I currently take Norco (Vicodin 10/325) tablets for fractured leg bones. Can this have something to do with it?  I've taken Norco for about 3 months now and I've only got RLS a month ago, so this may rule out Vicodin?

My doctor had also prescribed me daily vitamin pills and vitamin C and iron pills to go with my injury also. Could there be a connection between me taking these supplements and my RLS? Also, I haven't been eating well daily because of my injury. I usually eat once or twice daily, usually tuna fish sandwiches, burritos and not too many veggies or fruits and I drink on occasion too. I pretty much stopped drinking, take less pain pills and more vitamin and iron pills, but the RLS seems to get worse sometimes.

Madeline

Medical Reply

Hydrocodone (Norco, Vicodin) treats RLS symptoms. You may be noticing RLS symptoms at 3-4 am as that is when your evening/bedtime Norco dose has worn off. The increase in RLS symptoms may be due to being more sedentary since your fractured leg bone problem. It likely has little to do with your OTC supplements (unless they contain drugs that worsen RLS) or diet.

You should speak to your doctor about starting Mirapex or Requip at bedtime.

A Reply from Madeline

Sent: Friday, May 08, 2009 12:38 AM
Subject: RE: RLS revised

Thank you so much for your reply. I had requested (Requip) from my personal physician and he had told me that (Requip) is too dangerous, has adverse effects, and can be harmful to my body. Therefore, he wouldn't prescribe it to me even when I had asked. The folks at KaiserPermanente had told me that the physicians there had done their research that (Requip) has too many health risk factors and how they would be looking for an alternative for (Requip) or (Temazepam) for me. I take 2 (temazepam 15 mg) and I still have difficulty falling asleep without being awaken at 3 in the morning or 1 1/2 hrs after "falling asleep," and my dosage is 1 pill at bedtime.

I had seen my doctor today and he had prescribed me (Xanax/Alprazolam) and (Carbidopa/Levodopa 25/100). With the (Carbidopa/Levodopa 25/100)... I am suppose to take once daily, on an empty stomach, or an hour before eating. The doctors have also told me that the drug kicks in within a week and that it's time released. I've done some research and have found that the dopamine in the (Carbidopa/Levodopa) has worked wonders in other patients suffering from RLS. Isn't (Carbidopa) similar to (Requip or Mirapex) in the sense that they are both dopaminergic? and are these both drugs time released and do they have the same relief, effect, and side effects? And am I the only one who suffers EXTREME RLS to the point that I might literally go insane if I don't move my body to alleviate the uneasiness of the RLS?

I always have trouble discussing the symptoms to my doctors whenever they ask me to describe the symptoms, because they are very extremely difficult to explain. To me...it's like your Big Boss at work standing behind your back while you're sitting down trying to make a great first impression on your first day on the job. The sensation somewhat feels like a "vibe" of your boss lingering behind you even when he/she's not touching you, but you sense that vibe. But with RLS...this feeling is inside of you amplified 50 times trying to make it's way out of your body. Btw, I mainly suffer with RLS in my torso area and it almost feels like a warm/burning like aggravating sensation with pins and needles, but not really pain though.

I know that being sedentary can increase the RLS symptoms as you had stated, but is there any daily routine I can do to lessen or alleviate the symptoms? And why does the RLS symptoms seem to nearly disappear when my mental activity is at work (i.e., going outside to get fresh air, listening to jokes, playing pool/video games, etc.)? This makes me wonder if it might be a neurological disorder, or simply psychological? And why does RLS increase at night even when I do take my pills as instructed? My apologies for so many questions, but this is a debilitating illness for me and I don't know how much longer I can take this.

Another theory I have on RLS is that it was probably engineered by lab technicians so they can profit from it.

Madeline

Medical Reply

I am not aware of any research (published or otherwise) having been done by Kaiser doctors concerning RLS. I doubt that any such policy or advice about using Requip exists in the Kaiser system (as Requip is one of two drugs FDA approved for RLS) and the advice that you have received about the risk/benefits of the drug simply represent the misinformed opinion of your doctor who clearly is not well versed on RLS.

Very few doctors (and almost no RLS specialists) prescribe Sinemet (carbidopa/levodopa) on a daily basis for RLS (it does have a use for intermittent RLS symptoms). When used at more than 1 tablet per day (which is below what you are using but you will likely need more), almost all RLS patients develop augmentation (a severe worsening of RLS due to taking the Sinemet) which is something you do not want to experience. Read some of the older letters on our website (when Sinemet was used more commonly as doctors did not understand this augmentation problem) and you will get an idea of the horror stories this drug has caused.

Requip and Mirapex are dopamine agonists (they directly attach to the dopamine receptors), but Sinemet is a pre-drug of dopamine and just causes the production of dopamine to be increased. Although Requip and Mirapex can cause augmentation, it tends to occur much less commonly and is not typically as severe as what is caused by Sinemet.

Your RLS is severe but there are many patients in your shoes and with proper treatment (that may have to include dopamine agonists and other drugs), most all these severe patients should be able to get relief. Daily exercise at mild to moderate levels have been demonstrated to be helpful. There are not many other things you can do on your own to improve your RLS problem.

We do not know why RLS gets worse with rest and is improved by activity (mental or physical). This is being researched but has clearly continued to elude us. The fact that mental activity helps does not in any way imply that RLS is a psychological problem.

A Reply from Madeline

Sent: Sunday, May 10, 2009 9:05 PM
Subject: RE: RLS revised

I told my doctor about what you had told me about (Requip) and he had prescribed it to me and I feel a little better for now. I also notice that when I take (Norco) for my pain it also provides temporary relief of RLS symptoms as you had stated in your past email. I did some research and out of all of my friends and relatives that suffer with RLS had told me that they usually get the symptoms when something foreign enters their body in which their body is not acclimated to. For example, I noticed that the first time I took (Norco) I had developed RLS a month and a half later when I tried to lower the dosage.

There seems to be a pattern I notice with my friends and family concerning the onset of RLS...like an allergic reaction to their body perhaps? Perhaps something that is foreign to them can cause an allergic reaction such as RLS when a foreign substance enters their body that their body is not use to, and each person has something that their body usually accepts or expels.

 A friend of mine gets RLS when he eats certain kinds of food.. Maybe this is because his body in particular can't adapt to the certain (foreign) ingredients within the food. I also know someone who developed RLS after taking certain medications, so could it be possible that the cause of RLS is foreign substances entering a persons body that their body is not use to?

Madeline

Medical Reply

There are many triggers of RLS. Amongst them are many medications and you can find the list on our RLS Treatment Page and on our free downloadable medical alert card (found on the index section of our homepage). The mechanism by which these medications worsen RLS is not fully understood.

Sent: Saturday, May 09, 2009 6:49 AM
Subject: RLS medication treatment

I recently went to my year check up with a new physician and let her know that I was on 1mg of Clonazepam nightly for RLS and have been for almost 6 years.  It has worked well for me except feeling sleepy during the day. She said that this was not a medication to be used for RLS and that it was not good for me and wanted me to wean off the medicine. Once weaned off I am to see her again to get on a different medicine.

I have weaned off of the medicine gradually for the last month and my RLS has worsened. It is in my arms now and it takes hours to fall asleep. Once I am asleep it is a very light sleep. After a week of horrid sleep I took 1/2 mg of my medicine just to sleep. I will be seeing my doctor next week.

What is your opinion on clonazepam for treating RLS? If it was working for me shouldn't I just stick with it?


Lisa D.,
38 year old female

Medical Reply

Although Klonopin (clonazepam) was one of the first drugs recommended to treat RLS, it is really not an RLS drug. It works more as a sleeping pill (it is very closely related to the benzodiazepine sleeping pills) and simply puts you to sleep. It would be like treating back pain with a sleeping pill; if it puts you to sleep, you don’t have the back pain or RLS.

If you did want to continue with that type of treatment, there are much better sleeping pills (Ambien, Lunesta) that have shorter half-lives (3-6 hours) compared to over 40 hours for Klonopin (that is what is causing your sleepiness during the daytime). In addition, tolerance and dependence can easily occur with Klonopin (it may take years before that happens).

Requip or Mirapex are the drugs of choice for RLS and one of these should have been started as soon as you started weaning off Klonopin. Once your RLS symptoms are relieved by the medication, you should be able to sleep well.

A Reply from Lisa

Sent: Saturday, May 16, 2009 7:35 AM
Subject: RE: RLS medication treatment

My doctor put me on Mirapex and I already have relief from the RLS feelings which is wonderful. My main problem is that I stay at a twilight level of sleep until 3 or 4 in the morning. Can Mirapex cause me not to have a deep sleep? They have me taking melatonin and this has not helped me to fall asleep.

I have been off Klonopin completely for almost 2 weeks now. The doctor feels my lack of sleep is due to side effects from withdrawing from Klonopin.  The doctors are very hesitant to put me on something like Lunesta. What can a tired mom of 4 do to get a good nights sleep?

Lisa D.

Medical Reply

Ask your doctor to prescribe Lunesta or Ambien. They are very safe medications (especially when compared to Klonopin).

Sent: Tuesday, May 12, 2009 2:25 PM
Subject: migraines and restless legs syndrome

I have had migraines for over 20 years and I have had trouble sleeping for over 2 years. I recently completed a sleep study which showed I have restless legs syndrome. I would like to know the statistics of those that suffer from both migraines and restless legs syndrome. What studies have been done on these two possibly related disorders?

M H

Medical Reply

Sleep studies cannot diagnose RLS. Rather, they can find PLMS (Periodic Limb Movements in Sleep) which are often associated with RLS but occur more often without RLS (they occur very often in patients on antidepressant drugs like Prozac, Effexor, etc.). There is no known relationship between migraines and PLMS unless the migraine patient is on an antidepressant medication.

Sent: Tuesday, May 12, 2009 11:42 PM
Subject: RLS and Yoga

I am a 28 year old male with RLS. I am from India (currently in the CA, USA). Like others have described here, I have always had similar problems with sitting still for a long time, sleeping etc.

I have a very strange way of dealing with RLS, especially during the night. When I get that creepy, crawly feeling (kicks in usually within 15 min of trying to sleep) in my legs, I create some sort of sensation pulses through my body that counter this creepy feeling.

It may sound a bit strange, but I have discovered that this really works for me. It takes some time to find out the routine that works for you. I am sharing this with the intention that it might help someone. Here's how it works. During an attack, lying on the back (with the shirt off), draw circles and random shapes on your body, starting from chest to navel, also thighs, and all over the body, using your fingers, while barely touching the body. The smaller the point of contact, the greater the relief.
Your own subtle touch sends a shiver down through the legs giving relief. The best "shiver" is sent when I run my fingers gently starting from near the armpit until my hips along the side of my body. The idea is to stimulate the brain to regulate the body's electric pulses, which I imagine goes haywire during RLS attacks (I am not a doctor, this is just my personal interpretation).

I usually do this for about half an hour, before I finally manage to get some sleep.

I have been doing yoga for a few months now which has helped. Pranayama ( Breathing Science -not just mere exercise) can cure most of the illnesses, so I am confident it will cure me of RLS too. In just a couple of months, I feel the difference (I still have the regular episodes, but I don't wake up in the middle of the night anymore.)

Lifestyle changes: No Coffee, alcohol, cigarettes, tea or chocolates...:( They are all known to worsen RLS), have dinner 3 hours before sleep (I am a vegetarian).

You can learn yoga by checking out youtube (search for Baba ramdev, he is the best according to me). The sleeping technique called Yoga Nidra also can help. Please avoid enrolling in roadside commercial yoga centers, most are around just to make money. You can get full Yoga videos online for free.

Vikram

Medical Reply

Your technique is actually not that strange and variations of it are used by many RLS patients. They do stretches, have massaging devices and other physical means to help relieve their RLS symptoms. These all have counter stimulation in common where one type of sensation (tickling, massage) reduces the bothersome sensation (RLS).

Sent: Thursday, May 14, 2009 9:31 AM
Subject: I think I need a change, but what?

I have used Sinemet, (worked great but I changed because of daytime augmentation). Permax, ( this one I went off of when the heart damage news came out,) and lately Mirapex. I was using three .125 tabs, Mirapex, beginning at 6 in the evening and living comfortably for a few years, when suddenly the daytime symptoms began.

I didn't think I should increase the Mirapex, so asked my doc, (a GP with little RLS experience) if I could use Sinemet temporarily, and ease out of the Mirapex for a vacation from it. But it didn't work well at all and I am having augmented symptoms all day long, even while taking a Mirapex once every 12 hours and the Sinemet twice per night. I get through the night okay with the help of 1/2 of an Ambien, taken with the second- middle of the night- Sinemet dose. And if I get desperate in the daytime, I have taken one Tylenol #3, also.

What would be your suggestion that I should do? Would increasing the Mirapex have been the correct solution, or should I try something entirely different?

Margaret E.

Medical Reply

The mistake that you made was adding Sinemet to your Mirapex when you were starting to experience augmentation from Mirapex. Often, the augmentation caused by Mirapex may be mild such that just adding another dose earlier may have taken care of your problems. However, taking 2 or more Sinemet (the 25/100 tablets) per day by itself almost always causes augmentation but adding it to Mirapex is like pouring oil on a fire.

Your best course of action now (in conjunction with your doctor, of course) is to get off both the Mirapex and Sinemet. This is usually done cold turkey but you will need a potent opioid (like oxycodone) up to 3 times daily to take care of the RLS which will become very severe for about 1-2 weeks.

After 1-2 weeks you can try Neurontin or Lyrica and wean off the opioid. After a month or so, you could add Requip at a small dose to Neurontin or Lyrica but I would not increase the Requip very much for fear of causing augmentation again.

Sent: Thursday, May 21, 2009 11:03 PM
Subject: RLS symptoms

I am 41 years. old. I started experiencing RLS during my first pregnancy. It drove me crazy, but stopped as soon as I had the baby. The second time I became pregnant I knew I was pregnant because I started experiencing the symptoms of RLS the moment I became pregnant. Again, after the baby was born the symptoms went away.

When I became pregnant with my third child the symptoms returned, but not as badly and also stopped when the baby was born. My third child was born 3 1/2 years ago. In the past year or so I have experienced intermittent bouts of RLS. Tried the soap thing - and it seemed to help. Again the bouts were just intermittent; nothing too crazy.

About 2 weeks ago I stopped taking 10 mg. of Lexapro that I had been taking for the past 4 years for anxiety. I would take the Lexapro at night and would wake up at 4 am and not be able to go back to sleep. I figured that the Lexapro was preventing me from sleeping (and it made me gain some weight) and It seemed like my anxiety was better, so I decided I didn't want to be on any drugs. In the past 2 weeks the RLS has come back every night and is maddening!!!!! I can't sleep and I can't stand the crawling feeling. I guess the Lexapro was actually helping with the RLS.

What do you think and recommend???? I have no medical conditions, but I am very sensitive to medications and I tend to get anxious very easily. Also, I am reading that RLS contributes to heart disease and strokes and now I'm really scared.

Robin F.

Medical Reply

Lexapro was actually decreasing your anxiety levels, it may have indirectly been helping your RLS (less RLS with less anxiety).

You should speak to your doctor about getting on either Requip or Mirapex which should relieve your RLS symptoms.

The link between heart disease and strokes associated with RLS is still very tenuous and more research is needed to clarify this issue. When treated with a drug like Mirapex or Requip, any possible increased risk should be neutralized.

A Reply from Robin F.

Sent: Thursday, May 21, 2009 11:37 PM
Subject: Re: RLS symptoms

I live in the New York City area and have access to very good medical care. What type of doctor do you recommend for RLS patients? A neurologist or a sleep specialist?

Robin F.

Medical Reply

You should see a sleep specialist or neurologist (preferably one that specializes in movement disorders). Either can be good if they have enough RLS experience (you should call their office and check that they do see a lot of RLS cases and feel comfortable treating the disorder). Although, for simply starting Requip or Mirapex, your primary care doctor may (or may not) be adequate.

Sent: Friday, May 22, 2009 6:55 AM
Subject: Help with my RLS drugs?

I have been on .25 mg of Xanax, as needed, for RLS for 5 years. Although I have RLS daily, I live alone in a rural area and I am a teacher. I cannot afford the "hung over" effect of most drugs. The Xanax has worked great. I usually take it 2 times a week. Sometimes I can go weeks without taking it, sometimes I have to take it more. My last script was for 60 .5 mg pills. Cutting them in half, it took me 10 months to go through the script.

I've attended the same health practice for 5 years. Recently, the doctors changed. The new administration has a blanket policy that they do not prescribe Xanax for RLS or other long term use, because it has the potential for addiction. The new doctor agrees that I am not addicted nor dependent, and that my 5 years of medical records show that I have not increased dose or frequency of the drug.

The prior doctors agreed that because of my living situation and my early morning teaching requirements, that Xanax with its short half life was preferable to my situation. Despite that agreement, the new doctor refuses to prescribe it and put me on .25 mg of Klonopin. I took my first dose last night at 8.30 pm, and was in no condition to drive at 7:30 am to get to work. It is now almost 10 am, and the fog is just starting to lift on my brain.

Is there any evidence that Xanax is more addictive than Klonopin in long term users for RLS? Can you point me to anything in the published medical literature that says long term use of Xanax for RLS is not likely to cause addiction? Anything. Switching doctors in a rural area is not easy, and really, switching doctors for a script of Xanax sounds like doctor shopping. Its just that I had something that worked and fit my lifestyle, and now my doctor has changed it to something that is not going to fit my lifestyle.

Robin A.

Medical Reply

Unfortunately, your doctor (and most general doctors) do not really understand and know much about sedatives and sleeping pills. Xanax and Klonopin are both benzodiazepines (but Klonopin has a half-life of over 40 hours which is why you are so drowsy the next day while Xanax has a half-life of about 6-12 hours which is much more reasonable for a sleeping pill) and thus have fairly similar potentials (at equally potent doses) to cause dependence and tolerance.

When benzodiazepines are used intermittently, it is very difficult (or actually impossible) to get hooked on these medications. In fact, since Klonopin stays in your system for a few days, if taken a few times a week it may actually have a possible dependence/tolerance concern while a shorter acting one gives you less exposure to the drug (and of course, less daytime drowsiness) and thus is safer overall.

There is nothing wrong with treating intermittent RLS symptoms with a sleeping pill (although Sinemet 25/100 mg would do very well also and has no addictive potential but should not be used on a daily basis). However, my recommendation for the best and safest sleeping pills (that have little to no addictive potential and won’t leave your drowsy in the daytime) are Ambien or Lunesta.

It may be helpful to get a copy of my book on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. You can highlight the sections on treating RLS with sedatives and other drugs to help back up this email and to better educate your doctor on RLS and sleep. I also have a book for doctors that may be of benefit to share with your doctor.

Sent: Tuesday, May 26, 2009 2:08 PM
Subject: New Treatment on the Horizon!?

As you know from past correspondence I have a specialist that has been treating my RLS for about five years. The treatment has changed several times due to my reaction, non-reaction and adverse events from the different medications. Because of repeated problems with augmentation from Mirapex my doctor now wants to try Neurontin and also continue my low dose of Oxycodone.

As you are probably aware it gets very frustrating to keep changing medications especially not knowing what new side effects I may be facing. From the post on this site, I understand Neurontin is a fairly safe treatment for RLS, especially since Mirapex/Requip are proving to be more hindrance than help. Since I respect your opinion as much as I do my doctor I would appreciate your comments about this new regimen for me.

But more importantly I hope you can also enlighten me and the rest of us on a new drug treatment for RLS expected to be available this fall according to my doctor. He believes my situation will make me an excellent candidate for this drug. I forgot the name of the new drug but I understand research studies have shown great promise especially for those of us who can no longer take Mirapex/Requip.

Can you share what you know about the medication?
Jim D.

Medical Reply

Neurontin is a fairly reasonable drug for RLS. Many patients do very well on this drug but it does tend to cause sleepiness/drowsiness at therapeutic doses (600-1200 mg range per dose although some do benefit at the lower dose of 300 mg). The only way to see if it is the right drug for you is to try it. However, you should start out with low doses (that may be ineffective) to find out if you can tolerate the drug and increase it slowly as necessary.

The medication that you are referring to is the XenoPort XP-13512 (it has still to be named and will be marketed by XenoPort and GSK) and will hopefully be approved this fall or early next year (the FDA approval process can be somewhat unpredictable and tricky thus making the predication of approval very chancy). This drug is a pro-drug of gabapentin (Neurontin) and gets in the body much more predictably yielding better blood levels which should decrease the side effects and increase the effectiveness. So far, research studies have demonstrated that this drug is very effective and safe but we will see what happens when millions of patients use it.

Sent: Friday, May 29, 2009 5:23 AM
Subject: RLS and Splenda

I didn't see this on the list of medications to avoid, but the artificial sugar, Splenda, makes my symptoms much worse, even leading to terrible leg cramps. I would advise people with RLS to cut out all artificial sugars for six weeks and see if it helps.

The other thing you have to watch is your calcium/magnesium ratio. The correct ratio is 2:1. Taking one without the other can make your symptoms worse. I found this out after calcium supplements made my RLS/leg cramps worse. Always buy your calcium/magnesium supplements from your local health food store and find one that is balanced.

I think everyone has to find what works for them. Don't give up. Keep reading and keep trying.

Medical Reply

We don’t have Splenda on our list of medications or substances to avoid as this has not been a very common problem for RLS sufferers. However, we will post your email to see if others have noticed similar issues with this artificial sweetener. We often learn about associations such as yours with Splenda by emails such as yours.

Although several RLS sufferers have noted benefits from taking calcium or magnesium supplements, there is currently no proof that it helps most RLS patients and most studies have failed to demonstrate that the minerals help RLS.

Sent: Saturday, May 30, 2009 3:04 PM
Subject: RLS treatment?

I am barely 79 and for some years I get RLS mostly in my left leg when in bed, not every night, just once in a while. I also tend to get it after several hours on board a plane or traveling in a car, and this is a real nuisance. I have been diagnosed with Peripheral Neuralgia (sensory) which mostly affects my toes.

Should I take one dose of “Requip” an hour or so into an 8-hour flight, or would I need to be taking this continually? And what would you suggest that dose be?

Robert C.P.

Medical Reply

Requip can be taken 1-2 hours before a plane flight and should take care of your RLS problems. However, you must first establish the correct (and lowest) dose that is necessary to relieve your RLS symptoms.

For occasional bedtime RLS symptoms, Sinemet or a painkiller (such as tramadol, Darvocet, Vicodin) would be better choices as they work very quickly (15-30 minutes).

It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). The book discusses these issues at length. Profits from the book are donated to the RLS Foundation.

Sent: Sunday, May 31, 2009 7:04 AM
Subject: RLS

Does anyone else have the symptoms of RLS only on the back side of the knees? Mine switch from one leg to the other and sometimes it is in both legs. It has gotten so bad that I go for nights and not sleep a wink, it drives me mad and now I am having attacks while driving my car, mostly it is 24-7 and I am at the end of my rope after trying everything and spending thousands of dollars throughout the years.

Is there any real help out there?

Ray (62 years old)

Medical Reply

RLS symptoms can occur anywhere in the leg (or body for that matter) so your location is not that unusual.

I do not know what you have tried in the past but under the care of a knowledgeable RLS specialist, most everyone gets relief. You likely need to find a doctor with a higher level of expertise to treat you.

Sent: Monday, June 01, 2009 1:10 AM
Subject: Mirapex and Requip as bad as RLS

My girlfriend never sleeps through the night. She is 55 years old and has had RLS for over 15 years. She "bicycles" her legs for an hour to an hour and a half and then sleeps for up to two hours. The result of constant sleep deprivation leaves her feeling terrible. The only relief she gets is the weekend when she can sleep through the day where there are long stretches free of RLS unlike the nights when she has worked during the day.

She has tried Mirapex and Requip and although they give relief, she feels so foggy after a couple of days that she can't manage at work. Everyone says Mirapex or Requip will solve her problem but it hasn't. I have RLS but nothing like her intense experience.

My RLS occurs often while on cross country plane flights or when a passenger in a car. It seems very related to seating position and I never get it if I am driving. My girlfriend can get some relief from firm massage to the area just below the bottom of her spine but the relief ends when the massage ends.

Since RLS seems to be related to posture, circulation and activity level and since the drive is to walk or move your legs, walking and running are accomplished by a different part of our nervous system than other mental activities that require conscience effort. Doesn't this suggest that there may be other local treatments that could give relief.

It is so frustrating to hear Mirapex and Requip being recommended over and over when their side effects are so debilitating.

Michael M.
Newark, Delaware

Medical Reply

Most RLS sufferers who take Mirapex or Requip do not experience side effects at all. However, a small (but very vocal minority) do experience problems of which daytime sleepiness is amongst the more common and bothersome one. There are other non-FDA approved treatments that work well for RLS patients who cannot tolerate the dopamine agonists. These can be found on our RLS Treatment Page.

We are working on local treatments. I am currently leading a national medical trial of a sensory pad that may prove to be very helpful without causing any side effects.

Sent: Monday, June 01, 2009 11:26 AM
Subject: RLS/PLMD and pregnancy

Your helpful advice allowed me to investigate methadone as a treatment for my RLS during pregnancy. It worked really well for me, so I have pursued in vitro fertilization due to fertility problems. I went thru one IVF cycle and was fairly comfortable on 25 mg of methadone/day. After I miscarried, I had some night time anxiety and was overly sedated in the day time, so decreased the methadone to 17.5-20 mg/day.

Recently, I was treated with Enablex and hyoscyamine, both anticholinergics, for urinary tract pain. After a few days, I noticed I was twitching and jerking way more than the usual twitching that can be a side effect of the methadone. I also was experiencing terrible panic attacks in the middle of the night, agitation and daytime sleepiness. For the past 11 days I have had only 2 or 3 good nights of sleep, (I took Mirapex or Neurontin to calm the twitching.) The other nights, I walked my neighborhood up to 5 times a night, and try to calm my self with tiny chips of Klonopin pills (around .125 mg). Last night I only slept after I took .25 mg of Lorazepam. The Klonopin, extra 2.5 mg of methadone, and 150 mg of Neurontin did not help.

A search of the internet revealed that anticholinergic medicines are contra-indicated for RLS patients. I talked to my Urologist, who said he had not had any patients experience this before, and told me to stop the medicine about a week ago. I am feeling much better in that I do not have the daytime sleepiness and confusion that I had. However, I am still experiencing panic and insomnia and twitching and jerking when I try to relax. I have been off the medication for 7 days. My pharmacist says it could be 10-14 days until the medication is completely out of my system.

I have considered the possibility that the twitching and jerking is due to anxiety and nervousness, and am going to try to take 15 mg Remeron tonight (I know it aggravates some folks' RLS but it did not bother mine) and lorazepam if I am desperate. I

I am so frustrated because it took me so long to get off Requip (I augmented on Requip) and lorazepam so I could attempt a pregnancy. Now it seems that I may have to turn to these medicines again and may have to go thru withdrawal again, and possibly may not be able to attempt another pregnancy.

Can you offer me any advice on controlling PLMD during pregnancy? Do you think that the symptoms that appear to be a result of taking anticholinergics, are likely to dissipate?

Helen D.

Medical Reply

I am not sure where you found the information about a link between anticholinergics and RLS but there is no study or evidence linking these to the best of my knowledge (nor I have I ever heard of such a link in my personal experience treating RLS). Furthermore, if the those drugs did cause worsening of RLS, the effect should be gone within a few days (or less, more likely).

There is no way to treat PLMD during pregnancy other than with methadone which helps the leg kicks only very modestly.

A Reply from Helen D.

Sent: Tuesday, June 02, 2009 9:50 AM
Subject: Re: RLS/PLMD and pregnancy

Thank you for your response. Hmm. I guess I just read that they cause twitching and jerking, and that would (I guess) feel like an aggravation of RLS to an RLS patient.

My pharmacist guessed that it could take as many as 14 days to go away. Wouldn't it be a strange coincidence that PLMD would strike at the same time that I took the anticholinergic, which can cause twitching and jerking?

My RLS originated 3 years ago when I took Reglan which can cause the creepy crawlies as a side effect. (I did not know about the side effect until after I experienced it). I've been told that is also a coincidence. I do however, sometimes wonder if the Reglan had something to do with getting the RLS started.

Helen D.

Medical Reply

Reglan is well known for exacerbating RLS and PLMS. It is on our RLS Medical Alert Card (you can download these cards for free from our website) so that RLS patients can avoid the drugs that have been demonstrated to worsen the disorder. You should give a copy of this card to all your doctors.

A Reply from Helen D.

Sent: Wednesday, June 03, 2009 4:46 AM
Subject: Re: RLS/PLMD and pregnancy

Can Reglan permanently exacerbate RLS or only temporarily?

Helen D.

Medical Reply

That should not happen as the effect should only last as long as the drug is active which is typically about 6-10 hours. This is what most everyone who has had problems with the drug reports.

A Reply from Helen D.

Sent: Thursday, June 04, 2009 3:29 PM
Subject: Re: RLS/PLMD and pregnancy

Well, mine never did go away after I stopped taking Reglan. and it didn't go away when I delivered my baby! I have always wondered . as I read that Reglan has in rare cases caused permanent tardive diskinesia.

Helen D.

Medical Reply

Tardive diskinesia being caused by Reglan is a completely separate issue to RLS induced by that drug. Although I am giving you the known information about what happens with Reglan to most other RLS patients, it is certainly possible that your reaction to the drug is real but unique to your body chemistry and physiology. We learn by hearing stories such as yours then finding others with similar experiences.

Sent: Monday, June 01, 2009 3:59 AM
Subject: RLS

I have been a RLS patient for a few years. I have written to you several times and thought it would be a good time to bring you up-to-date as well as asking you a question. I have followed your advice and fortunately my physician has been open for any suggestions and to work with me.

First, my antidepressant was changed from Celexa to Wellbutrin as you suggested. I am on the minimum dosage and it really works very well. In fact, better!

Sometime ago I wrote to you mentioning the stabbing pains in my legs and you felt it had nothing to do with RLS. After researching the web I found the culprit which is aspartame or any chemical sugars like it other than sweet and low. That I can tolerate and it was an easy fix. I was even having flashing lights and my eye doctor couldn't find anything wrong.

The stabbing pains, tinnitus, and several other symptoms have gone away. No, I am not going to try aspartame again to see if that did it to me. I am very certain it did. It has been several months now since I stopped it.

My insurance company called and since Requip became generic they do not want to provide me Mirapex. (0.25) Requip was not a good drug for me as I was on it in the beginning. However, I have been back on it again for two weeks and it has been a horrible situation for me. The first night the RLS was back (could go 24 hours day after day with Mirapex taking only one pill). Have been experiencing a lot of weakness in my body, very low spirits, etc. Believe me, I will be hoping to go back to Mirapex when I see my doctor on Wednesday and ask him to contact my insurance company. I cannot believe the difference in my functioning, almost tearful, etc. I am hoping my insurance company doesn't gauge me with a co-pay as I, like many others, am on a fixed income.

Do you feel the body weakness is due to the RLS? As I sit here writing to you my hands, arms and even though I am sitting I feel it in my legs.

Sandy B.

Medical Reply

Although Mirapex and Requip are both dopamine agonists and act on the same receptors, they can be very different in any given individual. Unfortunately, you might have to pay an increased co-pay for the brand name Mirapex but hopefully, it will not be that substantially different. If it creates a financial hardship, some of the drug companies will give you the drug for free (or very reduced cost).

Body weakness could be a symptoms of RLS not being controlled. If the weakness goes away once the RLS is controlled then you can be of the link between these two issues.

A Reply from Sandy B.

Sent: Wednesday, June 10, 2009 8:52 AM
Subject: RE: RLS

I am still bummed out. Insurance company denied me Mirapex 0.125 so my physician is waiting for a fax to fill out a form hoping to override their decision.

Have you ever heard of Valerian 450 mg helping with RLS as well as not sleeping well at night even when the RLS is under control? If so, do you feel it is okay to take with Wellbutrin?

My muscle weakness has subsided since getting off of Requip. My doctor doubled my Mirapex (2 0.125) to also help me sleep and it is working.  Again, I still discuss your suggestions with my physician and he is a very good listener. You are the one that initially told me to get off Celexa/Prozac and, truthfully, the Wellbutrin is working much better.

If I cannot get some monetary assistance somehow with Mirapex, do you have any other suggestions as to what might help me? I honestly cannot pay the whole cost of the medication.

Sandy B.

Medical Reply

Wellbutrin is fine as it does not worsen RLS (like Prozac or Celexa) and may even help RLS symptoms in some patients.

Other choices include the non-dopamine drugs like gabapentin or painkillers (tramadol or opioids).

A Reply from Sandy B.

Sent: Wednesday, July 08, 2009 9:12 AM
Subject: RE: RLS

I did not get the Mirapex renewed as we were denied twice by the Insurance Company. I gave up pursuing it anymore.

I am now on Lyrica and it seems to be doing well with the RLS. Began at 50 mg first night and it was horrible. Advanced 25mg for a couple of nights and found out that 100 mg seems to do the trick and helps me to stay asleep also. That has been another factor with me for quite some time and I recently addressed it.

My three daughters have symptoms of RLS. Just like their mother and grandmother. One daughter is on Lyrica for fibromyalgia and found out that it helps with RLS so encouraged me to speak to my physician about it.

Must admit that I was quite hung over and slept an additional three hours for the first few days. My physician knows that I do not abuse medications and feels confident that I will not take more than is needed and of course not to go over 200 mg. As I said before, 100 mg seems adequate.

Sandra B.

Medical Reply

Lyrica has become one of the more common drugs that I use for RLS patients who do not do well with dopamine agonists (or like in your case when the can’t afford them). Typically, I start at 50-75 mg and will increase to 150 mg per dose (I sometimes need to dose twice daily for those with RLS symptoms around the clock) as a maximum dose. Therefore, your 100 mg dose is right in the range of usual treatment.

Lyrica is not really a drug that can be abused and sedation does tend to be a problem that usually goes away with time. Weight gain is often another concern so watch your diet.

A Reply from Sandy B.

Sent: Sunday, July 12, 2009 4:51 AM
Subject: RE: RLS

A real bummer! My Medicare D will not accept my prescription for Lyrica. They want my physician to call and explain why I need it. I am going on Neurontin when he returns from vacation. Didn't want to do it before in case I have any problems with it so I am using samples of Lyrica.

Can you tell me what MIGHT be the dosage for me? Taking 100 mg of Lyrica seemed to be perfect. No problems with RLS on Lyrica and if I did begin to feel it during the night it quickly passed plus it gave me a good night's sleep which I haven't had in a couple of years.

Sandra B.

Medical Reply

Too bad about the Lyrica not being covered as it clearly has provided the relief you needed without side effects.

It is difficult to guess at the equivalent amount of Neurontin that would match Lyrica at 100 mg as the absorption of Neurontin is very erratic and various considerably from person to person. You should probably start at about 300 mg and titrate up to 600-900 mg. If you increase the drug slowly the chances of side effects are diminished.

Sent: Wednesday, June 03, 2009 11:10 AM
Subject: Low dose Naltrexone (LDN)

I am wondering to what extent Low Dose Naltrexone (4.5 mg of Naltrexone) has been investigated for RLS. I would be interested in any information on this subject. The website, www.lowdosenaltrexone.org does an excellent job of explaining the medication's properties, but there is no mention of RLS.

Dave S.

Medical Reply

We really do not know what naltrexone would do for RLS as it has never been studied for that disorder. Since opioids help RLS symptoms, it is possible that drugs like naltrexone that block the opioid receptors may actually worsen RLS symptoms but that is just my speculation. We would need some experience of patients trying the drug before I could credibly answer your question (in my vast experience working with RLS sufferers, I have yet to hear of any trying naltrexone).

Sent: Wednesday, June 03, 2009 1:07 PM
Subject: PCD has been miraculous relief from RLS

I have had RLS as long as I can remember. I was "officially" diagnosed in 1999. Since then I have been on probably every drug ever prescribed for RLS. I have RLS symptoms 24 hours a day. For the last 3 - 4 years I have been pretty much in a state of sleep deprivation. I can't remember how many lunches and dinners I have endured standing up, evenings on the couch reading to a grandchild which have been missed, excruciating car rides I have endured.

Currently, I am on 3 mg of Requip 3 x day and 5 mg of methadone 3 x day. This helped for a while but now I am approaching "misery" again. However, in January, I read an article in Chest magazine online titled "Pneumatic Compression Devices are an Effective Therapy for Restless Legs Syndrome."

I called my physician and asked what he thought about this. His nurse said he would research it and call me back. And in about a week he did. He knew all the details and said he thought it might really be helpful but no guarantees and certainly not much research on it yet. I priced the devices but they are prohibitively expensive.

On my routine visit to his office, he asked if I had found a machine and I said no, too expensive. I did say that the only way insurance would approve it was for chronic venous insufficiency, which I have had and I guessed I would have to go to my family physician and start working with her to convince her that maybe this machine would help the RLS.

He looked at my swollen ankles and said, he would write a prescription for a PCD and he would have his therapist call a home health agency for me. OK, I said but I wouldn't count on being approved. 3 days later the home health care agency called and said they had a device to bring to me.

I was diagnosed with non Hodgkin's Lymphoma in 1996. I had chemo and surgery and am free of disease. But, I have often said, that RLS has affected the quality of my life in a far greater way than cancer. And that is a fact.

The home care agency brought a compression pump with the 3/4 leggings. From the first day that I used it, till now, a period of 4 weeks, I have not had one instance of RLS discomfort. To me this has been one of the greatest moments in my life. I cannot even begin to describe the feeling of having refreshing, regenerating sleep after so many years of sleep deprivation, inability to even sit in a chair or couch much less the bed ,for any extended period of time.

I have reduced my medication to 1/3 to almost 1/2 of what I was taking but most importantly I can sit on the couch in the evening, I can ride in the car and I can sleep, blessed sleep. We don't have any idea how long this PCD will be effective but right now I just thank God for the rest of the past 4 weeks. I am also very grateful for a doctor who was willing to listen, to research and think outside the box.

Regena S.
Augusta, GA

Medical Reply

Thank you for your letter. We will post it on our site for others to learn from.

We still have a lot more to learn about PCD for RLS. The studies have been mixed with some showing no benefit while others (like the article in CHEST) showed benefit.

Let us know how well the PCD works over time for your RLS.

You may be getting augmentation from your Requip (I would need more info to be sure about that) in which case getting off the Requip may be very helpful (although you will have a week or two of marked worsening of your RLS).

Sent: Thursday, June 04, 2009 8:15 AM
Subject: RLS, Wellbutrin and Insomnia?

I need some help with antidepressant medications. I have had RLS and depression most of my life, and I'm very sensitive to prescription drugs.

I've got my RLS symptoms almost totally controlled with a low dose of Requip (.25 mg) at dinner, and several diet and lifestyle changes. I am taking 200 mg. of Wellbutrin which works for my depression but it's giving me severe insomnia (only 2 to 3 hours sleep per night).

Even at 100 mg. I still sleep only 3 or 4 hours a night and my depression comes back. I tried 25 mg. of trazodone last year and had trouble with headaches, feeling groggy and nauseous, and having to urinate 3 or 4 times each night. I bounce between significant depression and exhaustion. Is there something else I can try? Some combination of drugs?

Sue C.
Sleepless in Seattle

Medical Reply

The secondary tricyclic amines are the only other antidepressants that seem to be RLS friendly. They include desipramine (our favorite one), protriptyline and nortriptyline. They are older antidepressants may work well for many RLS sufferers. Only trial and error can determine if they are right for you.

If these do not help, then you will have the try the SSRI (like Prozac) or SSNRI (like Effexor) which are known to worsen RLS. Some patients do not experience exacerbation of their RLS symptoms with these medication but if you do, then you will have to increase your RLS medication.

Sent: Thursday, June 04, 2009 9:25 AM
Subject: Iron, cancer, and RLS

I have had RLS since I was a teenager (I am now 62). My mother also had RLS, as do my two brothers and a nephew.
My RLS has followed the classical pattern, increasing slowly in frequency and intensity as I age.

In July 2001 I was diagnosed with prostate cancer, and had a radical prostatectomy in Sept 2001. After the initial convalescence, during which I was taking oxycodone PRN for pain, my RLS became much more severe in frequency and intensity, causing me a great deal of difficulty with my sleep. I would waken every 90 to 120 minutes, have to get up and stretch my legs for several minutes and play computer games like Solitaire for 30 minutes or more before I could go back to sleep.

During this period, I was found to be anemic (I had to have two blood transfusions during my surgery) and was prescribed oral ferrous gluconate three times per day. That helped my RLS somewhat. Later, I read that iron deficiency is implicated in RLS, and that central iron levels may be low in RLS sufferers, resulting in impaired dopamine synthesis. So I went back on oral Fe, on my own.

About 2.5 years after my surgery, my PSA levels began to rise again. Unfortunately, my doubling time was 23 days. I began a clinical trial with Iressa, but my PSA spiked so alarmingly that I was taken of Iressa and put on a LHRH analogue – my PSA went quickly to “zero”, and after 12 months I was taken off the hormone therapy. 3 years of undetectable PSAs and then recurrence. Before this second recurrence, I had become concerned that my high iron intake was not a good idea for a cancer patient. So I stopped it. My PSA doubling time is now 5 months.

Back to the RLS… About 2 years ago, I began Requip 0.25 mg about 60 min before bedtime – it was miraculous ! I began to have full nights of sleep. However, I eventually had to begin escalating the dose, and I am now taking 0.25 about 4 hours before bed, 0.50 about 2.5 hours before bed, and 0.50 at bedtime. I often awake early with RLS, and almost daily I have mild episodes of RLS during the day, and more intense episodes in the early evening that I just tough out (the symptoms usually go away after a while).

I feel as if I’m between a rock and a hard place – my ferritin is probably low again, and potentiating my RLS – but if I go on Fe therapy again, it may promote the growth of my Prostate cancer. Do you have any thoughts about this ?

I will soon have to go back on treatment for my Prostate cancer – probably a 2- or 3-month course of an EGFR inhibitor (erlotinib) followed by depot LHRH agonist.

Mark L.

Medical Reply

I have never heard of any connection between taking iron for low iron levels and promoting prostate cancer (although that is not my specialty). Iron therapy should be no problem with almost any other disease as long as your iron and ferritin levels are being monitored to make sure that you are not overloading on iron (which is very hard to do with oral iron therapy).

Requip may be causing augmentation of your RLS (worsening due to the drug) or your low iron levels may be exacerbating the RLS thus requiring more Requip. You could try Mirapex (the other FDA approved dopamine agonist for RLS) instead of Requip and see if it works better. You could also try anticonvulsants such as gabapentin or Lyrica.

Sent: Friday, June 05, 2009 5:46 PM
Subject: Severe RLS

I am so much worse with RLS than I have been in a long time. Maybe my meds are not working anymore I will be seeing my doctor next week. He is willing to work with me on the medications. These are the med's I am on now

GABAPENTIN 600 MG 3 X DAILY
BUPROPION HCL 150 MG 1 DAILY
HYDROCODONE 5/500 2-3 DAILY
TRIAZOLAM 0.25 MG 1 DAILY
plus multivitamin, B12. magnesium, iron, coQ10

I HURT 24/7 ( feels like needles are wrapped around the calves of my legs ) The only relief is to drug myself and maybe get about 3 hours sleep a night and walk and take hot baths and get in the floor and do leg stretches . I am 69 and I don't know how much longer I can get in the floor and get up again. I have to read standing and marching in place.
I am also getting massage therapy daily.

Do you have any suggestions for another combination of medications that I could try? I have been on Mirapex, Requip, Lyrica and Neurontin but none of them work for me now, I have not taken them in combination with other drugs

I had my doctor check my ferritin iron level and it came back a 36 He did add an iron pill but have only been on it for a month. I can't tell that it has made any difference as of now. Would Xanax be a good medication to mention to my doctor? I am so tired and stressed No one should have to live this way.

TW

Medical Reply

Oral iron is certainly worth trying however it is not very likely that you will be able to raise your ferritin levels sufficiently to help your RLS. There is a much better chance that intravenous iron would help you but that is still experimental and it would be difficult for you to find anyone to order and administer it to you.

Lyrica might be better than gabapentin but only a trial may fully determine if this is better for you. Methadone or oxycodone (more potent opioids) should work better and would be my main suggestion for now.

Xanax generally does not help RLS patients (except to go to sleep and you already have triazolam) and may even worsen symptoms if you stay awake.

Sent: Friday, June 05, 2009 7:36 PM
Subject: RLS, edema, foot discomfort

I have been dealing with what has been diagnosed as RLS for several years. It only occurs in my left leg, and generally at night and in the morning are the most severe. I also suffer from edema in my left ankle and numbness and discomfort in my left foot. I am currently taking 1mg of Requip three times daily. I have tried Mirapex and several other medications, but they were not very effective.

The Requip is having less and less effect. For relief I take 20 to 30 mg of OxyContin or oxycodone every night. Sometimes I may have go to 40 or 50 mg.

Dan

Medical Reply

It is not clear that you do have RLS. Do you have while at rest an irresistible urge to move your affected leg with the abnormal sensations and does movement relieve the urge and discomfort (at least while you are moving)?

A Reply from Dan

Sent: Saturday, June 06, 2009 10:16 AM
Subject: Re: RLS, edema, foot discomfort

The answer is yes, but why is it only the left leg with RLS and the left ankle with edema?

Dan

Medical Reply

The edema should have little or nothing to do with the RLS (except if the edema causes leg discomfort which may then in turn trigger RLS symptoms). You may also have a neuropathy problem in your left leg which may trigger some RLS symptoms there. It is not uncommon for RLS patient to have symptoms only in one leg but most often it also occurs in the other leg (but not as often or as severe).

You are on very high doses of opioids and may be getting to (or past) the point where tolerance occurs thus making the opioids less effective. I don't know if you have tried Lyrica yet (it is also used for shingles, so you may have been on it already), but it often is helpful to treat RLS symptoms and may allow you to decrease your opioid dose.

Sent: Sunday, June 07, 2009 7:40 AM
Subject: RLS not doing well with Requip then clonazepam?

Have suffered for several years. My doctor prescribed Requip which made me extremely nauseous the first night. Tried it with same results the next night. Then he prescribed clonazepam which was a lifesaver for about 4 months. Now it seems to do nothing.

Last night I took one, then Tylenol PM about an hour later, then another Clonazepam. Finally fell asleep for about two hours. I can't stand this and no sleep at age 58 while trying to teach 25 fourth graders.

Margaret W.

Medical Reply

You can decrease the nausea with Requip by taking it with food (just take it earlier, like with dinner as it takes longer to start working when taken with food). If that does not work, consider trying Mirapex (with food). Clonazepam causes tolerance (which is likely what you are experiencing and is not one of the recommended drugs for RLS.

You should also avoid Tylenol PM as it contain Benadryl which (if it does not put you to sleep immediately) may worsen RLS.

Other choices include the anticonvulsants (like gabapentin, Lyrica) or painkillers.

Sent: Tuesday, June 09, 2009 6:41 AM
Subject: Anti-spasmodic muscle pain drug that *does not* interfere with RLS?

I have been taking 5-10mg of oxycodone a day for RLS for about 4-5 years. I have never had to increase the drug and feel comfortable at that dosage. However, this past month, I have had two additional problems enter into the equation - allergies and muscle spasms/neck pain and tension headache/migraine.

I had been taken Benadryl for the allergies but have switched over to Zyrtec as the Benadryl pills were *killing* the RLS.

For the neck/headache thing, I have been prescribed Fiorcet (as needed) and Zanaflex. (Zomig when a true migraine). I have been on this combo before since I tend to throw my neck out once or twice a year. However, this time around, I feel like the Zanaflex is aggravating my RLS to the degree that I am medicating more and more with the oxycodone (actually, this is no hydromorphone and leads me to yet one more question). So, the first question is if Zanaflex is known to worsen RLS and if there are any recommendations on this front that I can talk to my doctor about.

The second question is if you know anything about this national manufacturing shortage of oxycodone and when it will be over? My doctor switched me out to dilaudid temporarily since for many months in a row I had trouble getting the oxycodone filled. We both agree that I shouldn't be making the permanent switch yet and should go back to the Oxy - but this is dependant upon the industry right now.

Jennifer

Medical Reply

I am well aware of the national oxycodone shortage as it has been impacting many of my patients. I am not sure when it will be over or what caused it.

Zanaflex is not known to worsen RLS. Many patients use this medication to treat their RLS (it does not help RLS) and not generally been demonstrated to exacerbate RLS.

Sent: Tuesday, June 09, 2009 5:14 PM
Subject: re: website with remedy for RLS

I have just started a website that features a program that permanently removed my RLS (I suffered for 20 years).

Because it's impossible to get any credibility, I'm offering the program for free (it's usually $34.95 US) and there is no obligation for anyone to pay anything until they are sure that they are cured.

I had RLS for 20 years and it took me 48 days to be totally free ... so I would expect 6 to 8 weeks to be the norm.

If you could pass this information on to your members, I'd appreciate it. You won't regret it. They'll be amazed as I was when they experience the results.

It's a very natural cure, and it's also quick in the way it works.

David Wimble
www.RLcure.com

Medical Reply

Since even experts such as I do not know the cause of RLS, your theory could be as correct as any of the other many theories out there. However, much work still needs to be done before we figure out why there is a genetic and familial link and other peculiarities to this disorder.

I will post your letter so that others will have access to your information. However, it is most likely that you remedy works through the placebo effect which can be very powerful in this disorder.

Sent: Thursday, June 11, 2009 7:55 AM
Subject: Epidural Steroid Injections (ESI)

I recently had two ESI's for a herniated disc (not major but worth considering the injections). The first ESI gave me good results for about a week or so for my back but more importantly and unexpectedly my RLS/PLMD. However, the further from the injection date the less relief for my back and a significant increase in my RLS/PLMD.

This pattern continued until my second ESI (about 9 weeks later) with similar results. Currently, about 3 weeks after my second ESI my RLS/PLMD is just a bit shy or going off the charts (as compared to relatively well controlled prior to the ESI's).

It seems almost like an augmentation effect which I hope is transitory. In any event, I was wondering if you have any thoughts or recommendations about this.

Walt & Nancy

Medical Reply

I have not heard much about epidural injections causing worsening of RLS. We have seen many times that trauma to the spine (such as injury or even surgery) tends to trigger RLS symptoms but an epidural is really not traumatic. The steroids themselves should not cause an increase in your RLS symptoms so your problem is somewhat perplexing.

Sent: Saturday, June 13, 2009 3:04 AM
Subject: RLS treatment with Requip?

My wife seems to have RLS from the other people whom I've read in your forum. She said her middle child has RLS as well. She takes Ambien only 1-2 times per week. I sleep like a log most all the time. If we're need to get rest for an outing she takes Ambien. Even though she takes Ambien, she has the knee jerks and is tossing and turning.

Also if we ride in the vehicle say, 3-4 hours, she has to straighten out legs , or we have to stop and walk it off. She fears to that she may need hormones as well. How is taking Requip going to go along with hormones? Would daily walking help relieve RLS without taking Requip.

M.E.

Medical Reply

It does not sound as if your wife needs medications such as Requip at this point. Daily exercise may help her problem but using occasional Ambien is a reasonable solution at this point.

Sent: Saturday, June 13, 2009 2:50 PM
Subject: Neurofeedback helpful for PLMW?

Hi--I've written a couple of times before and wanted to ask your opinion about Neurofeedback. I struggle with severe PLMW, without RLS or PLMS, and current average about 4 hours of sleep. I was part of sample Dr. Earley described as "Quiescegenic nocturnal dyskinesia" in 2008 Sleep Medicine article.

Erik S.
Denver

Medical Reply

Biofeedback and neurofeedback have not been demonstrated to be helpful for RLS or PLMS. However, patients with quiescegenic nocturnal dyskinesia do not have an urge to move and therefore may actually not have RLS (although Dr. Earley does suggest that this may be a variant of RLS) and of course you note that you do not RLS.

There are no studies on patients with PLMW with or without PLMS so it would be hard to answer your question without extrapolating from the PLMS database (which I reviewed above).

Sent: Sunday, June 14, 2009 11:09 PM
Subject: RLS, sleep apnea

I have RLS for few years now. When I take medication It relieves the RLS pain but I do not get good sleep since I get nightmares all night. I have tried Requip, Mirapex (1 mg), Lyrica( 50 mg). I have tried the following combination with no success;

1. Mirapex + Triazolam (0.125mg)
2. Mirapex + Temazepam (15 mg)
3. Mirapex + Ambien CR ( this one increase intensity of my RLS ).
4. Mirapex + Lyrica
5. I have done blood test, no Iron deficiency.
6. I did do sleep study. They said I have sever case of sleep apnea too. They gave me CPAP, and BiPAP but I can not wear the mask. I tried it for 6 months. No success, I cannot wear my mask. I tried various version no success.
7. Finally, my doctor said he has no solution for me.
8. I am tired all day due to not getting a good sleep. I do not know what to do next.

Alan M.

Medical Reply

Your problem may be more due to severe sleep apnea not being treated rather than side effects of Mirapex or Requip. Until you treat your sleep apnea properly, it may be difficult to impossible to treat your RLS differently (if you are sure that the Mirapex is the culprit causing your nightmares).

Triazolam and temazepam worsens sleep apnea so your should used them cautiously. Opioids or tramadol may be helpful instead of Mirapex but these drugs also worsen sleep apnea.

Sent: Monday, June 15, 2009 11:57 AM
Subject: RLS and anti depressants and tramadol?

I have high blood pressure. My cardiologist has prescribed a calcium channel blocker for me. I can not take it because of the effect it has on my RLS. He also told me to speak to my doctor about an anti-depressant. I take Tramadol, 50 to 100 mg. a day. It has changed my quality of life completely. I am able to sleep and this dosage seems to work all day to keep the RLS under control. My problem is, most anti- depressants affect RLS adversely and Wellbutrin does not mix well with tramadol, so what antidepressant is available for me to take.

My blood pressure is kept fairly lower with the use of Toprol but I still have "white coat syndrome" and it still goes up and down at any given time. I am in a dilemma as I want to do what I need to keep the blood pressure under control but if I don't take the Tramadol, my life is miserable. I have tried Requip, it is awful, the side effects are crippling for me. Mirapex is slightly better but still makes me feel miserable the next day. I don't know why the doctors push these two drugs. The drug companies build them up and they really are not the miracle we RLS sufferers had hoped for.

I would rather take my changes with Tramadol and live a quality life then take something that is as crippling as RLS but in a different way. (Requip and Mirapex) I am sure these drugs work for some people but I am definitely not one of them. My daughter also has RLS, hereditary, and she can not take these medications either. Tramadol has literally saved our sanity. Hopefully we will be able to tolerate it until a new, effective drug is discovered to aid in the relief of this devastating condition. What can I take with tramadol for anxiety?

Does Xanax cause any negative side effects with the use of tramadol or for RLS? I used to take Xanax. I only took it when in a stressful situation, like flying. What is the latest on Solzira and do you think this drug looks promising?

Peggy L.

Medical Reply

Typically, calcium channel blockers do not worsen RLS so this may be a problem unique to you.

Although many RLS sufferers are having problems with Mirapex and Requip, they still help millions of RLS patients and are still very helpful and tolerable drugs for the majority of RLS patients. However, for those who do not benefit or tolerate these drugs, other medications can be very helpful. Anticonvulsants such as gabapentin, Lyrica and the new drug from XenoPort (it will not be called Solzira due to the FDA and the new name is not yet known but it should be out by late this year or early next year) can be quite helpful.

You could change from tramadol to an opioid (Darvon for example) and then Wellbutrin may be an option. If that is not acceptable, some older antidepressant drugs like nortriptyline may work for you. When the depression is severe enough, we do use the SSRI or SNRI drugs which may worsen RLS and just treat the RLS as needed.

Xanax taken intermittently is generally not a problem when used with tramadol.

A Reply from Peggy L.

Sent: Tuesday, June 16, 2009 11:37 AM
Subject: Re: RLS and anti depressants and tramadol?

I am confused about something. If calcium channel blockers are not a problem, why does it state on many web sites to stay away form them if you have RLS. It is very misleading to many people.

Peggy L.

Medical Reply

I have no idea how calcium channel blockers got on the “RLS bad drug list” but I have gotten letters similar to yours about this class of drugs. In fact, there are a few early articles that suggested these drugs actually helped RLS. For whatever it is worth now, I am setting the record straight.

Sent: Tuesday, June 16, 2009 7:33 PM
Subject: Lyrica and/or Mirapex

I I have been on Mirapex for many years, upping the dosage as needed.
I am up to 1.5 mg at bedtime (2 hours before), and most nights it doesn't work anymore. Recently I have added hydrocodone and can sleep but wake up druggy feeling, and sleep is not natural. My dr. OK'ed the use of Lyrica which I had read about for RLS. My question is should I also take the Mirapex with this new drug? Should I go off Mirapex gradually if it works? The dosage was suggested at 75 mg, to go to 150 in a week. As it didn't work well last night, I took two capsules (150 mg.) tonight. Should I take Mirapex also?
 

Gyana P.

Medical Reply

You are on a very high dose of Mirapex (most patients max out at .75 mg). It would probably be helpful to decrease the Mirapex dose to about half (.75 mg). This may temporarily increase your RLS symptoms for which opioids (try oxycodone or methadone for a week or so) may be needed.

After about 1-2 weeks, the Lyrica (max dose of 150 mg) may then work better but you might need a small dose of oxycodone or methadone to get relief. Smaller doses of opioids may be better tolerated and work well when combined with other drugs.

Another option would be to discontinue the Mirapex and see if that makes the other medications work better (after an initial 1-2 week of RLS worsening).

Sent: Tuesday, June 16, 2009 4:56 PM
Subject: Gabapentin

I have been on Mirapex for several years. I tried gabapentin one night and had a bad night. My legs would not settle down and I was up until 3 O'clock until my legs stopped bothering me.  I took 300 mg and was told to take another 300 mg if that did not work.

Should I try the gabapentin again? I do not want to go through another night like that.

Lorraine P.

Medical Reply

If you stopped Mirapex then added gabapentin, you would likely need a higher dose to treat your RLS (symptoms get worse for a week or so when stopping Mirapex).

You do not say what dose of Mirapex you have been taking and if it is not working (or if you increased it because it was not working). I really need more info to fully answer your question.

A Reply from Lorraine P.

Sent: Wednesday, June 17, 2009 3:47 PM
Subject: Gabapentin

I take Mirapex 1 mg per day on the day I took gabapentin.   In your email you said when you go from Mirapex to gabapentin you should take more gabapentin in place of Mirapex. How much should I take and for how long?

Mirapex is not working that well and I have been on it for years. Should I take more? I would like to try gabapentin but my doctor is just a GP.

Lorraine P.

Medical Reply

You are clearly going to have problems changing from Mirapex at 1 mg (very high dose of Mirapex for RLS patients as most max out at .75 mg). Typically, gabapentin will not be able to substitute for the Mirapex and you will go super crazy (as you have already noted) when trying to decrease or stop Mirapex and replace it with gabapentin.

When going off Mirapex, most everyone needs potent opioids (like oxycodone or methadone) for a few weeks. After that period you might be able to switch to gabapentin (slowly increasing to about 600-1200 mg per dose). However, the gabapentin at those therapeutic doses often causes drowsiness (even next day) and may still need low potency opioids to relieve your RLS symptoms adequately.

Your GP may be able to work with you (It may be helpful to get a copy of my book for patients on RLS (Coping with your sleepless nights). Profits from the book are donated to the RLS Foundation. I also have a book for doctors that may be of benefit to share with your doctor.) but you may need to see a specialist to fully institute a better medication regimen.

Sent: Saturday, June 20, 2009 1:37 PM
Subject: Dealing with oxycodone?

My RLS which I told you in previous email had augmented on Requip, so I got off of it and saw a neurologist, who unfortunately put me on clonazepam, which did nothing for the symptoms, but also added back in Requip and had me on program for about 6 weeks

Presently am withdrawing from the clonazepam , which I definitely do not want to be on for any reason, which seems to be quite difficult.  My doctor had me taper the Requip from 1 mg per night to .5 mg per night and adding oxycodone which I have done first week 5 mg up to 10 mg that I am taking now.

I really have no or very mild day time symptoms, and night time is mild usually starting around 5 to 6 pm. I take the .5 mg Requip at 7 and the oxycodone at 9. It keeps symptoms at bay throughout the night. (also on .75 mg of the clonazepam taken at 7 pm which I am trying to taper off slowly)

My RLS is under pretty good control right now and will stop the Requip altogether Sunday night or Monday night. Do I need to take a drug holiday from the oxy taken at the 10 mg level once a night every 2 weeks for 2 days  as you have suggested in some posts or at this level is it safe to continue with out worry of addiction?

John

Medical Reply

There is really no need for a drug holiday from oxycodone at the dose you are taking. You may even find that once off Requip for a few weeks that you may get by with smaller doses of oxycodone.

If you have trouble sleeping once of the clonazepam, consider asking your doctor for Ambien or Lunesta for those nights.

A Reply from John

Sent: Sunday, June 21, 2009 4:24 PM
Subject: RE: dealing with oxycodone

I don’t know if people say it often enough , but thank you from the bottom of my heart for taking the time to reply to my, and others letters. I have learned tremendous amounts from your feedback and reading countless letters and responses on your site. Your dedication to helping RLS sufferers is way beyond extraordinary.

I just ordered another copy of your book ( for the doctors. I have the coping with restless legs copy , its like my bible) so I ordered the clinical copy for the doctor, which I am sure he will understand better than I will.
I hope to get my general practitioner doctor to read it, so I can revert to him for my long term care, instead of the new neurologist I have to travel to see, ( who I hope has read your book, and avoids benzodiazepines like the plague) . I grew up with my General doctor., and with the help of your book, I don’t see why he could not effectively treat me, once he understands the disease better and its treatment ranges.

I also plan to have a iron ferritin test done at my annual physical a week from tomorrow to see if it is in the 20 range. Which I know they consider normal , but for us RLS patients it is much better if I can get it to 50 or so (Is it not?) I know this would have to be done under a doctor’s care, since increasing the iron can be problematic, and maybe should not attempt now with all the other adjustments going on, but will test to see what it is. I believe I have idiopathic RLS since being a child , but higher iron levels still can help, I would think.

I am having tremendous depression at this time which I relate to the withdrawal from the clonazepam, since I have started Wellbutrin and am into my 3rd week, (150mg.xl lowest dose) taken in am. Started to feel better last week, but that's when I believe the quick withdrawal from the clonazepam caught up with me, (the .75mg. out of 1.5 mg over a 2.5 week period).  Now am waiting to see if I can get out of this before continuing the withdrawal process. Will go more slowly when/if I feel better. Perhaps trying the titration method, which I found on another site, that reduces the clonazepam by about 1% per day. Don’t know if I need to go this slow , but as of now the withdrawal symptoms are pretty hard to handle.

Can stopping Requip contribute to depression on its own, since it does interact with dopamine receptors, or is that from either the clonazepam or another chemical imbalance in my brain?

John

Medical Reply

It is best to get to 50 or above for serum ferritin levels but it is often very difficult to accomplish that task with oral iron. Your doctor should monitor this therapy to assure that you do not get iron overload (even though it is very tough to do that with oral iron).

There is nothing wrong with tapering clonazepam more slowly than normally suggested but it will then take a long time to get off the drug.

Stopping Requip should not lead to further depression unless your RLS worsens. There have been a few reports about dopamine agonists like Requip improving depression but that is likely very unusual.

Sent: Saturday, June 20, 2009 8:58 PM
Subject: RLS

I am a 52 year old female taking a crash course through menopause. I have had RLS for almost 6 years and I know it started when I stopped working out. I was an avid exerciser until I hurt my hip doing Taebo. I take 1/2 of a .25 mg Xanax and I break a 50 mg Ultram only at night. This combo has worked for almost a year.

Will I ever be able to go to sleep normally without medication or is RLS permanent? I need to know because I understand I am on the lowest amount of drugs and the only place to go from here is to higher doses. I am afraid of the addictive properties in both.

I was also told that Requip and others like it can cause Parkinson's. Do you know that to be the case?

Medical Reply

Unfortunately, most RLS sufferers remain the same or slowly get worse with time. Certainly, some patients have remissions or even complete reversals of their RLS but those are by far the exception rather than the rule.

There is absolutely no possibility that Requip or Mirapex (the 2 approved dopamine agonists for RLS) may cause Parkinson’s disease. They are also used to treat Parkinson’s disease but that is the only connection.

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