Patient letters on RLS symptoms and remedies- Page 93

 

Kicking RLS/PLMD Patient


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

 

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Sent: Thursday, September 02, 2010 5:54 PM
Subject: Requip and RLS

I was directed from a RLS forum to you for an opinion concerning my RLS. T o make a long story short I have been medicating my RLS for about 6 years. I went the usual rout of Klonopin, Mirapex, Requip and finally because I was getting symptoms during the day the neurologist I see put me on Requip XL so I get 24 hour coverage. I started out at 1 mg and have had to increase the dosage as things get worse. I am know up to 14 mg once a day and this covers me pretty well for a 24 hour period. I see no end in having to increase the dosage as things progress.

If history is any kind of indicator, I'll probably stay at 14 for maybe a few months, then I'll eventually have to bump it up to 15. Do you think this is a little excessive? Obviously my neurologist is OK with this since he write the RX. But here lies the problem. All the side effects that the product info page describes, I have. I feel quite crummy all the time and I have had enough!! Any ideas?

Don C.

Medical Reply

It sounds like you already have a good idea that your therapy is not ideal. Your dose of Requip is on the very high end (I rarely get any of my severe patients even close to the range that you are at). It sounds as if you are getting augmentation from the Requip which will cause you to need higher and higher doses until you no longer get any relief.

The treatment for your problem is to get off the Requip and change to anticonvulsants and/or painkillers. There are several ways to accomplish that goal but it must be done carefully so as not to create severe RLS problems while switching over to your new drug regimen. It will likely require an RLS doctor with more expertise than your current neurologist.

A Reply from Don C.

Sent: Sunday, October 03, 2010 3:55 PM
Subject: Benadryl

I was encouraged to get your advise concerning using Benadryl. Every 8 weeks I receive a Remicade infusion (Crohn's disease) and 50 mg of Benadryl is pushed before they start the Remicade drip. I have never noticed any increase in my RLS during or after the infusion. This has been going on for 4 years. Could there be an accumulative effect and this is what I am reaping?

The concerned people at the We Move Forum were aghast and thought I should get some input, so here I am. I know there are other antihistamines on the market, but Benadryl seems to be the drug of choice. Ideas?

Don C.

Medical Reply

Although most RLS patients do very poorly when given Benadryl (especially when given IV or IM), some seem to tolerate these and other drugs that are known to exacerbate RLS. As we do not know exactly why the sedating antihistamines bother RLS in the first place, it is harder to explain why they do not affect you. Any explanation would be pure speculation but I doubt the accumulative effect as it would then have worsened your RLS initially when you started taking it.


Sent: Sunday, September 05, 2010 12:52 AM
Subject: Which would be best?

My doctor thought RLS was a mind over matter issue so I enrolled in an RLS study to see if medication would give some relief. The study was for Neurontin which seemed to work well for me. When the study was complete I was assigned a new primary care manager (we receive medical care through the military) and he switched me to 1 mg Klonopin. In November 2007 a new PCP traded Klonopin for Requip which I've been taking .5 mg in the morning, .5 mg at about 5 pm, and 1 mg at bedtime. That regimen was working well until about 8-9 months ago when I began gradually experiencing RLS symptoms earlier in the day and with increasing severity. Then I began having troubles during the night again. Is this the augmentation I've read about?

Last week my doctor had me stop the Requip and traded it for Mirapex. This has been a disaster. Almost continual RLS symptoms day and night and very little sleep for more than 30 minutes at a time.

Would going back to Klonopin or Neurontin for a time help? Would I then be able to go back to the Requip which worked for a couple of years?

Margaret

Medical Reply

It is very likely that you are suffering from augmentation. Once you get augmentation with one dopamine agonist (Requip), you will very probably get it with another (Mirapex). It is possible that if you go off the dopamine agonists and restart one of them at a later date (but keep your dose much lower) that you will not experience augmentation again. However, the odds are reasonably high that augmentation will occur again (so I typically to not prescribe that class of drug after augmentation has occurred).

We generally stop the dopamine agonist when augmentation occurs but most patients will need a strong opioid (oxycodone or methadone) for a week or two to cover the markedly increased RLS symptoms that occur when getting off the dopamine agonists once augmentation has occurred.

Neurontin (or Lyrica which is similar and may work better) is a very reasonable choice for treating your RLS. You may need opioids in addition.

Klonopin is not really an RLS drug but rather just helps RLS patients fall asleep. There are much safer and better sleeping pills (Ambien, Lunesta) for that purpose.


Sent: Sunday, September 05, 2010 10:41 AM
Subject: My daughter's RLS?

I was up with my daughter (10 years old) until 2am because of RLS.  She is very good at describing it and I don't know how to help her.

She has ADD and is on 25 mg of Strattera but I don't want to add another drug for restless leg. How do I help her?

Laura C.

Medical Reply

RLS is actually fairly common in children. Studies have showed that 2% of children suffer from that disease.

The guidelines for treating children are not very clear and it would be best if she saw a pediatric RLS specialist. Some do prescribe medication but there are other things to do which may be helpful.


Sent: Sunday, September 05, 2010 5:06 PM
Subject: RLS

I think I can officially claim to have RLS. As many other folks have stated the same symptoms. It's driving me nuts!! waking up every night around 2am and having the need to run around the block several times....Energy burst as though I could leg push a train 40 feet! I would also stretch and do some leg push ups which would ease the symptom, then I could sleep a little better. What happens when I get into bed to sleep, I'm fine for an hour or so but then the heart rate increases and then the leg syndrome kicks in.

This RLS started increasing 3 weeks ago, although I believe I have always had it since I remember at the age of 17 or so having similar symptoms but it was gone for the longest time and I even forgot anything about it until now. Getting worse now as it not only affects my sleep, it happens even if driving in the car or sitting at a desk...it has come to this point that I am doing research on the subject.

3 or 4 weeks ago it just came back...no warning or anything.

I need to explain a little of my background before getting into the rest of my story. During my earlier years, I was a sugar freak...I could eat a whole box of brown sugar if I wanted however I did tone down a little as I reached 21. Last couple of years I have been in the process of trying to figure out my constant fatigue and digestion problems...I was lead to believe it was due to or part of my endocrine system and began researching on that subject. I had my thyroid checked and found it not working the way it was supposed to. (Results of TSH Blood test) So I researched ways to stimulate and naturally correct it's function....I started exercising more including laps in a pool...so basically a whole nutrition program including vitamins and minerals. The program was working great! I slept better, was breathing better the whole thing. Not one sign of any RLS.

However, I stopped the program due to work schedule and the economy but was doing ok. Recently I tried another stimulant but at the same time I was not eating right....hot fudge sundaes, sodas, shakes, cheeseburgers were basically counter acting any effect on the endocrine therapy......and that's basically when the RLS came full force. Now my whole system is wacked....my digestion system is in bad shape...I have an excessive need to nap or sleep during the day but during the night I got to work up the legs and chest...leg pushes and arm push ups.

I am not someone who is willing to take medications...I want to find the source and stop it there....not numb it....I've already done damage by the junk foods presented before us....

But I do believe that Sugar, the endocrine system and the chemical imbalance in our bodies is a factor in the RLS problem. Perhaps the damage was done long ago when I was a sugar freak? I don't have diabetes, I have been tested for that and I am no where near it. But I may have screwed up the endocrine system.
Re-balancing may be the most difficult task although for a moment in time...my earlier health diet brought on some relief and hope. Perhaps if researchers can look into the Endocrine system, perhaps they will find the answer that is affecting so many of us.

Sean M.
43 years old
Northridge, CA

Medical Reply

Researchers are looking into the causes of RLS and have included endocrine causes. RLS is more common in those with diabetes and thyroid disorders (and mildly so in some other disorders) but the vast majority of patients with endocrine disorders do not have RLS.

Sugar (or other refined carbohydrates) has been found by some RLS sufferers to worsen RLS symptoms but most do not have this association. Low iron levels have been linked with RLS but you need to check a serum ferritin level to see if that is your problem (and before taking any iron supplements).

There is no non-medication way to treat low thyroid. If your thyroid gland is not producing enough thyroid hormone you must take medication or suffer the effects of low thyroid hormone levels.


Sent: Thursday, September 09, 2010 3:27 AM
Subject: RLS questions

I was diagnosed with RLS about a year ago. I have been suffering the symptoms for nearly three years now. My doctor prescribed Mirapex to treat the symptoms and the success was great for about three months then the symptoms began to creep back in. My dosage was multiplied by a factor of 5, and again the symptoms went away for several months but have crept back at are at a level now that is nearly intolerable. My legs jerk violently whenever I sit/lay down and the pain is becoming worse day by day.

I am wondering if this is common for an RLS sufferer or if perhaps there is something else at play here. I experience a number of the symptoms listed for Parkinson's such as the violent jerks, depression/anxiety, digestive trouble, and lately muscle stiffness in other areas such as arms and hands, and in increase in losing my balance. I hate to increase the Mirapex again, just to mask some underlying issue. Any thoughts?

Jeremy R.

Medical Reply

You are suffering from augmentation. That is a worsening of RLS symptoms from taking a dopamine drug like Mirapex. If you continue to take or increase your Mirapex, the augmentation will continue to worsen (your symptoms will become even worse and more medication will eventually not help at all).

The treatment is to get off the Mirapex completely. Typically, the RLS worsens for a week or 2 and potent opioids are needed to treat this time period. Most patients do well with anticonvulsants (Neurontin, Lyrica) and/or opioids once off the dopamine drugs.


Sent: Monday, September 13, 2010 12:32 PM
Subject: Mirapex and weight gain?

Am an 83 year old female using .5 mg of Mirapex at 7 PM every evening for RLS, which I've suffered from about 40 years! Although it mostly has given my legs peace, I have gained about 40 pounds over the past year, since the dosage has increased from .25 to .375 mg to the present .5 mg!

Is there a relationship to Mirapex? I cannot reduce my weight by any of the recommended means, including calorie reduction to around 1100 calories per day!

Help, please?
Barbara in Delray Beach

Medical Reply

Weight gain is not one of the common side effects of Mirapex. In fact, weight loss is the more common problem. However, every person is different and any side effect can occur with any drug. You may want to speak to your doctor about changing to Requip which is a similar drug (which would likely work as well but may or may not cause the same problem).


Sent: Wednesday, September 15, 2010 8:54 PM
Subject: Ultrasound therapy for RLS?

I am a Japanese osteopathic doctor. I tried therapy of RLS by ultrasound, and got good results. I have a new hypothesis about RLS. It may be not untreatable disease.
 

Method:
Irradiate by ultrasound (1MHz) margin of bilateral M.rectus abdominalis, rolling the inducer, slightly medially. Irradiation needs 5 minutes on each side. This aims stimulation of Truncs sympatheticus. Probably its effect depends upon improvement of conduction of pre-and postganglionic nerves.

My hypothesis:
Probably impairment of conduction of Truncus sympatheticus. causes symptoms of RLS due to decrease of blood stream of legs, and ultrasound irradiation may improve this impairment, and ameliorate symptoms. I have many successful cases.

Effect to high level sympathetic nerves
I tried ultrasound irradiation for cervical nerves including ganglion stearate. Side-lying position is useful. This procedure needs 3MHz, always from low level to high level. It may increase blood stream of brain by effect to high level sympathetic nerves. I succeed for improvement of autonomic dysfunction, depression, panic disorder etc .

Takahiro Aoki,
Japan

Medical Reply

There is no literature available regarding ultrasound therapy and RLS. That is not to say that it does not work but rather that we have no studies supporting it or negating it.
Your studies are interesting and may be valid but we would need further double blind studies before recommending this treatment. There is a very profound placebo effect for any RLS treatment so we have to be very careful to attribute your ultrasound treatment (or any other treatment) as being helpful for RLS with those double blind studies.

There are currently several theories on the cause of RLS so your theory could be as correct as any of the others but you do need a lot more research before there is any real support for your therapy.


Sent: Wednesday, September 15, 2010 9:05 PM
Subject: Augmentation

I'm a 43 year old and have had severe painful RLS for years and 2 years ago found out I had sleep apnea. I have been on a number of RLS drugs (Requip, Mirapex, Klonopin, gabapentin, Ambien, temazepam, opioids, and finally Sinemet). Sinemet seem like a miracle drug to me it completely took away my RLS symptoms.

Until it turned against me. I have had augmentation 2 times before with this medication. I took the standard drug holiday, but always returned to Sinemet. It would work again for a brief time. However this time I did not recognize the ongoing augmentation. I was put on a low dose narcotic and told to take only 1 to 2 25/250 preferably 1. Well the RLS kept getting worse in frequency and magnitude so I would increase my dose of Sinemet, it would get worse I would increase my dose of Sinemet to finally 1000 to 1250 mg a day. This went on for about 7 months as I had a one year script refill. When I realized what was going on I told my sleep doctor, who I think the world of and is a very good man. He gave me a long lecture on where I went wrong , why had I not called him earlier and what was I thinking ( always discuss changes in drug dosages with him!)

He has told me that I am going to go threw a very rough time. And Sinemet along with other dopamine agents will no longer be a option for me. Is this true? I have horrific painful RLS attacks morning noon and night with rebound happening every morning and day its pretty scary right now. I Am currently taking a oxycodone plus a 15 mg of temazepam to help sleep. But the RLS attacks still happen the meds do give some relief

I read on a different blog, a RLS sufferer stated that Sinemet augmentation and rebound of this nature can cause permanent RLS symptom increase and severity. Is that fact or fiction.

How long does the augmentation last?

Tom L.

Medical Reply

Sinemet is not used any longer for RLS when taken on a daily basis (at least not by any knowledgeable RLS doctor). Almost all patients get augmentation as you have already discovered. I do not know your experience with Mirapex and Requip so I cannot comment whether they would work when taken properly,

Most RLS specialists suggest stopping Sinemet abruptly when augmentation occurs (some do like to taper the drug, but I find it simpler to just stop it). Typically, it takes about 1-2 weeks until the augmentation worsening of RLS returns back to baseline. Most patients need potent opioids (like oxycodone or methadone at high doses) for that 1-2 weeks. Augmentation is a temporary issue once the offending dopamine drug is stopped and does not lead to permanent worsening of RLS symptoms.

A Reply from Tom

Sent: Wednesday, September 15, 2010 10:53 PM
Subject: Re: Augmentation

My experience with the Requip even at small dosage caused me to vomit and have real problems with head rushes. The Mirapex had similar results except the head rushes came every time I bent over plus some very unusually sexual urges. What is recommended dosage of the opioids? It has been suggested that once I get threw this that Lyrica might be an option for me.

What is your opinion on this medication. I last Monday I found a neurologist who specializes in RLS so that should help as well. Is Sinemet an addictive drug?

Tom L.

Medical Reply

The best dose of the opioids is the smallest dose that relieves your RLS symptoms. This is detailed at length in my books.

Sinemet is not an addictive drug but when augmentation occurs, it will act quite similarly to being on an addictive drug (as you will need more and more drug with time until it no longer helps).

Lyrica is a very good drug for many RLS sufferers.


Sent: Tuesday, September 14, 2010 1:58 PM
Subject: Marijuana for RLS?

I am an 82 year old man who has suffered from RLS for most of my adult life (without knowing there was such a medical condition for much of that time). Nine years ago I had a major chest surgery (6 hours) and the RLS noticeably worsened thereafter. I went on-line to read about insomnia and ran across descriptions of RLS - the first time I had ever heard of it. Subsequently tested by a sleep specialist and he confirmed my RLS, starting me on Mirapex.

This worked quite well for several months and then its effect began to decrease markedly. About a year ago I switched to ropinirole, which proved to be only mildly helpful, and I was having increasing augmentation. Getting more than 3-4 hours of sleep was impossible and I was constantly exhausted and began to think I couldn't go on. A month ago I tried marijuana. It's been like a miracle drug! No more RLS, no more augmentation! I take one mild puff every night right before bed. It starts to work within 5 minutes.
I immediately go to bed.

I have almost totally eliminated other drugs for RLS and sleep-related problems - no more ropinirole, no more Ambien etc. If I take more than one puff of pot it doesn't do the job. I hope I don't develop tolerance. I obtain the marijuana from a friend of mine who grows it in Trinity County, northern California, so I am confident of the source. I live in another state where marijuana is totally illegal - almost a death sentence. I hope the RLS community will be aware of this wonderful remedy. But I also realize that we all react differently to drugs.

Jack

Medical Reply

It is well known that marijuana helps RLS. There are many letters on our website confirming your experience.

I cannot say that marijuana is a better drug than the alternatives (anticonvulsants, opioids) but the legal issues and health issues (lung problems from inhaling the drug) are can cause issues.


Sent: Wednesday, September 15, 2010 5:58 AM
Subject: RLS and acupuncture?

Do not know if there is any benefit in writing. My husband has been plagued with increasingly worse RLS. At first we thought it was because of his obscure upper GI bleeding....meaning he bleeds but no one has found out where, even Mayo Clinic. When the hematocrit is low sometimes the RLS is very bad even in the day and now affects his arms too.

Last night he was just back from getting 3 units of blood at the hospital. He fell right into sleep at about 11 p.m. and then about 12:30 was up walking, opening and closing doors, doing strange things. Sleepwalking? Not sure.

He has been on Mirapex at before bed and in the hospital they increased the dose to twice a day. But I believe that med makes it worse and also causes sleepwalking. That dose should (as his doctor says) knock him right out since he is on 100 mg amitriptyline too.

He cannot take the drugs like Ativan because he hallucinates, etc.

Listen to others and hear there is no cure. Just had to write to someone. What about acupuncture?

Barbara C.
Edgewater, MD

Medical Reply

Acupuncture has not been shown to be helpful for RLS.

Low iron levels (which likely occur when he drops his hematocrit) may be the source of his worsening RLS. Taking iron (under his doctor's supervision) may prove to be very helpful.

There are other drugs that work well for RLS (anticonvulsant drugs and opioids) which he should also discuss with his doctors.


Sent: Tuesday, September 21, 2010 10:51 AM
Subject: A marijuana question

Would it possible to extract the ingredient in marijuana that is effective against RLS and dispense it as a pill?
This would eliminate the harmful respiratory effects.
Perhaps in this form it would be legal?

Thank you for being such a big help with your web site.
I wish we had someone like you in Pennsylvania. Since my RLS started, my doctor thinks I'm a head case.

Ed M.

Medical Reply

The active ingredient of marijuana (THC- tetrahydrocannabinol) is currently available in an FDA approved pill called Marinol. This drug is currently approved for nausea and decreased appetite associated with chemotherapy. I have tried the drug on RLS patients with modest success. The problem is that the dose of THC is fairly low and gets in slowly compared with much higher and quick onset peak levels from smoking the drug.

Here in California patients can obtain legal marijuana that can be taken via a water pipe that makes it more "palatable". Typically, only 1-3 puffs are needed for relief.


Sent: Thursday, September 23, 2010 7:40 AM
Subject: Lamictal worsening RLS?

I am taking Lamictal 200 mg. daily for a depression related condition. I am also taking f Requip 3 mg at night. My RLS is getting worse. I am a 59 year old male with RLS for approximately 10 years. Is there a connection between the worsening condition and Lamictal?

My doctor wants me to go on Provigil to combat daily sleepiness. I almost lost my job because I fell asleep.

John F.

Medical Reply

Lamictal typically does not worsen RLS. It is much better to treat your RLS properly so that you get adequate sleep rather than cover up the problem by using Provigil. It would be appropriate to use the Provigil temporarily (to help you function during the daytime) while working on proper treatment for your RLS symptoms.

You may have to consider opioids for further control.


Sent: Thursday, September 23, 2010 7:57 PM
Subject: RLS is driving me crazy.!

First I would like to thank for you this forum. I have learned so much about RLS and the various treatments that are out there. It has definitely helped me to be educated when talking with my Neurologist and given me a place to verify what has been prescribed by him. It has also made me realize that I am not alone in my quest to find some type of relief of this 'disease'.

My RLS symptoms have been occurring for about 5 years (I am 36) to the point now it is very difficult to get to sleep. I feel the RLS in my left leg the entire day however it is only at night when I really struggle with it. On occasion I will feel it in my right leg as well. I will toss and turn for hours making the next day almost impossible to get through. It is having a severe impact on my job, my family, and my life in general. I have tried numerous medications including Requip, Mirapex, Lyrica, Gabapentin, Clonazepam and Clonidine and probably a few other that I have now forgotten. I have taken each to the max of their dosage limits to no avail. All of which have had some either some type of side effect or did nothing at all. I have tried them in certain combinations as recommended by my Neurologist with no relief. I have had blood tests done for iron deficiency which came back negative. I have cut out caffeine for several days with no affect on my RLS.

About 4 months ago, I pulled my lower back and had an MRI done. I was diagnosed with 2 bulging discs and prescribed Vicodin (5mg) for the pain. I realized that when taking them at night, my RLS symptoms completely disappeared and I was able to get a good nights sleep. As a result, I have been suffering through the back pain throughout the day so that I can take the Vicodin at night just to get to sleep. I expect however that this prescription will come to an end as I work on getting my back fixed which almost frightens me because I know that as soon as that happens I will again be suffering at night to get to sleep.

The Neurologist I current am seeing has mentioned Opioids however he seems to be very weary of prescribing me any. He believes that a tolerance will occur causing dosages to continually increase which he does not want to happen. So far, I have been able to take 2 at night for the past several months and have not needed to increase any dosage which makes me question his assessment.

I have decided to make an appointment with a Sleep Center that I found listed on your site however it is not covered under my insurance so the expenses will be completely out of pocket however I am at a point now where I cannot keep going months at a time trying different medications that don't work and in the process, not get any sleep at night. The Sleep Center mentioned doing a sleep study however this is very expensive and I question whether or not it is needed.

Are there certain facts or statements that I should be telling my Neurologist? I almost feel like I am being looked at as a addict by asking for an opioid however I have no past history of any type of substance abuse.

Rick E
Ohio

Medical Reply

You do not need a sleep study as it does not help diagnose or treat RLS as the symptoms of RLS occur only while awake and you already have a diagnosis. A sleep study can document PLMS but that is not very relevant to your problem (or helpful for most RLS patients anyway).

You do need to either work with your doctor or find one that will prescribe the proper medication to treat your RLS. We do not like Vicodin as it contains acetaminophen (Tylenol) which does not help RLS (so the minimal risk of side effects are not worth it). However tramadol or opioids (that do not contain acetaminophen) are used very often on a long term basis for RLS. When monitored appropriately, dependence, tolerance or escalation of dosage is very uncommon.


Sent: Saturday, September 25, 2010 2:40 PM
Subject: RLS and neuropathy?

Since I have both RLS and neuropathy and am already taking 1 mg of Mirapex 3 times a day and Neurontin 300 mg three times a day (1 at noon, 1 at 5;00pm and 2 at bedtime), I was wondering if I can take both Neurontin and Lyrica? My neuropathy does not hurt my feet but really bothers me half way up my leg (feels really tight like in a vice).

Betty H.

Medical Reply

Typically, we recommend taking only one anticonvulsant drug at a time. It is difficult to mix and match drugs of the same class together and their side effects can be accumulative.

A Reply from Betty

Sent: Saturday, September 25, 2010 5:46 PM
Subject: RLS and neuropathy?

Do you think one is better than the other? I have never tried Lyrica.

Betty H.

Medical Reply

In general, Lyrica does work better than Neurontin for more RLS patients (less side effects, more predictable response and usually more effective) but this can vary with each person. However, it is more expensive as there is no generic available currently and it is often not well covered for non-FDA approved uses (which currently only includes seizures, shingles pain and fibromyalgia).


Sent: Sunday, September 26, 2010 2:50 PM
Subject: Mirapex-caused insomnia?

I have been on Mirapex about 10 years, am now up to 1.5 per night (one dose) and have added 5 mg hydrocodone. That's been about a year, I think. Besides the augmentation, which we've talked about, now , for almost a week, I have had insomnia and have hardly gotten any sleep, some nights none, even though I'm sedated. Can you give me an outline I could present to my doctor, so I can get off Mirapex and maybe just be on the hydrocodone, only a bigger dose? Would that work?

Can you suggest other things? Methadone scares me; it seems so strong and so toxic (not that what I'm on isn't). I am going to skip the Mirapex tonight and see what happens.

GP

Medical Reply

Stopping Mirapex suddenly, especially when you are on a high dose will most likely result in marked rebound problems. The RLS will dramatically worsen for a week or so and the hydrocodone will likely not be sufficient to cover these worsened symptoms.

Although you are frightened by the more potent opioids like methadone, it is likely that you will need one of those more powerful opioids to get off the Mirapex. After the 2 week period of worsening you may be able to decrease your need for opioids and go back on hydrocodone. However, with a moderate potency opioid such as hydrocodone, you may need an additional medication such as Lyrica to help control your RLS symptoms.


Sent: Tuesday, September 28, 2010 4:03 PM
Subject: RLS

As just a little background- I have been having back problems for a few years. My PCP put me on Elavil for the back problems. I had taken it for a while until I noticed the dose I was on was elevating my pulse and blood pressure. He asked me to stop taking it. I noticed after about 3-4 days being off of it extreme pain in my thighs with an intense urge to move which usually would come on later in the day and movement would make the pain subside so long as I continue moving. Once the symptoms start the only thing that gives me any relief is narcotics.

I have had Type 1 diabetes for 16 years and of course immediately suspected neuropathy. I had a nerve conduction study showed everything was fine there. Incidentally this same physician helped with the back pain using sclerotherapy (MRI of my spine is clean).

I have now started with a new PCP and we wanted to see if using Mirapex would be helpful for me as the Elavil only gives me relief of my symptoms approx. 70% of the time (narcotics help the other 30%). I got up to the .5 mg dose and stopped the Elavil and about 3 days later started with symptoms again. I stayed off the Elavil went back to the PCP who prescribed Lyrica and told me I would likely feel relief with the first dose and if not after 3 days. I am on my 4th day with no change (I am still taking Mirapex).

I was recently reading the RLS foundations Diagnosis and treatment in Primary care 2008 document which states supportive Clinical features for the diagnosis of RLS is positive response to dopaminergic therapy as "Nearly all patients with RLS show at least an initial positive response to either L-dopa or dopamine-receptor agonists".

Now for my questions:

1. The physician (Rehab doctor) who did my nerve conduction study diagnosed my thigh pain as meralgia paresthetica. Neither me nor my PCP thinks this is right as I am only slightly overweight (BMI= 26) and do not tend to wear tight clothes (am a male). Does me responding to Elavil make this diagnosis more plausible?
2. Does responding to Elavil and not to Mirapex make the diagnosis of RLS less plausible?
3. Should I try Sinemet or Requip or will non-response to Mirapex mean I likely will not respond to other like medications? Does non-response to these medications make the diagnosis of RLS unlikely?
4. In your experience is response to Lyrica usually as quick as I was lead to believe? If so, should I try Neurontin as I am not responding to Lyrica?

Personally I am ok with continuing the Elavil as, so far, it is the only thing that works (I am taking smaller doses so no pulse or blood pressure problems with it) and using Elavil means my need for narcotics are only sporadic, thus the likeliness of dose escalation is decreased and I have never had a problem stopping these medications (I was taking quite a bit of narcotics while getting the sclerotherapy). But of course I am uncomfortable asking for narcotics (up until now I have used extra from my back to help with the symptoms) as anytime I have I almost universally have met with resistance to prescribing of narcotics so would like to find something that works without using them.

Cameron

Medical Reply

It does not sound like you have RLS. Typically, Elavil worsens RLS so stopping it should make RLS improve. Not all RLS patients respond to dopamine drugs like Mirapex, but about 90% of patients (who have never been on a dopamine drug before) will respond so a lack of response is supporting evidence against RLS.

However, the major aspect of making a diagnosis of RLS is the urge to move the affected limb and the movement should improve the symptoms.

To determine whether or not your symptoms are compatible with a diagnosis of RLS read the 4 diagnostic criteria below:

1) You must have an almost irresistible urge to move your legs which may or may not be associated with uncomfortable leg sensations. The uncomfortable leg sensations (or other limbs, but the legs are the most common) are not usually painful, are often hard to describe and cause you to move your legs to get relief. The discomfort may be the classical "ants crawling up the inside of the legs" but can be merely a pulling sensation, electrical feeling or actual aching type of pain. Some RLS sufferers can only describe it as a need to move the affected limb.

2) The symptoms of urge to move your legs and uncomfortable sensations come on only at rest (sitting or lying down, but not standing).

3) The symptoms are relieved in part or completely by movement (walking, shaking or rubbing the leg, etc.). The amount of relief from moving the affected limb may vary from moderate to complete elimination of the symptoms but the symptoms come back almost immediately after the movement has stopped.

4) They also occur only or are worse in the evening, especially when going to bed. As the RLS worsens, symptoms start occurring earlier in the day and may even then occur upon waking up in the morning.

If your leg problems are similar to above description then you likely have RLS and if they are different then you should look for another diagnosis to explain your problem.

A Reply from Cameron

Sent: Tuesday, September 28, 2010 5:49 PM
Subject: RE: RLS

Sorry I wasn't real clear on my symptomatology with my initial email. This is the part that is most confusing to me. Elavil helps yet all that symptomatology of RLS fits me exactly. I usually do not start to feel this way until early evening (earliest it happens is around 4pm and usually only after a full day of sitting at the computer for work) and the need for movement is so strong I simply can't deny it (I laugh with my 8 year old about whether he wants to do some football drills "because my legs sure are ready") and without the movement I have extreme pain.

Would it be out of character for an RLS sufferer to mostly feel this need to move and pain in the thighs with very little involvement of the knee down? If, with the above clarification, you think this could be possibly RLS do you think trying Requip would do me much good since Mirapex did little to nothing (and no I have never taken a dopamine drug before the Mirapex)?

I'll tell you if there is an exception to a rule that will usually be me! You would think I would win the lottery with the "luck" I have.

Cameron

Medical Reply

With your new information, it does sound as if you do have RLS.

Although 90% or more of patients do respond to a drug like Mirapex, many don't respond and some even get worse (since we don't know why dopamine drugs we certainly can't figure out why some do worse or not benefit at all). You can try Requip but the odds are that it will not help (but you never know until you try). I would not recommend a trial of Sinemet as we do not need to try it to confirm your diagnosis (your clinical description of symptoms are all that is necessary for that purpose) and daily use of Sinemet will worsen your RLS symptoms.

Lyrica is a good choice. The response to this drug can be immediate but it may need to be increased (it should only be increased on a weekly basis to avoid side effects) to higher doses to be effective. Opioids work great for RLS and can be used alone or in conjunction with other RLS medications.

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.


Sent: Thursday, September 30, 2010 11:09 AM
Subject: Requip and worsening RLS?

I have restless leg (more like body) syndrome as I have restlessness in my arms, legs, ankles and neck. I am 68 years old. I take 1mg Requip at night which initially helped me tremendously. As my restlessness progressed to the rest of my body, I started taking hydrocodone which allowed me to lead a normal life. However, my doctor, fearing addiction, wants to take me off of the hydrocodone and put me on Savella. Savella, although for pain, is an antidepressant-like drug. Will it react badly with the Requip I am taking?

JayDene K.

Medical Reply

If your RLS symptoms have progressed to the rest of your body as you increased your dose of Requip, it is quite possible that the Requip has actually worsened your RLS (called augmentation of RLS) and is driving your need for more medication. This is a complicated issue that is not well known by most doctors who are not RLS specialists and is difficult to handle (you can read the many letters on this topic on our website).

Opioids such as hydrocodone work very well for RLS and typically do not lead to tolerance, dependence or addiction (unless that has been a problem in the past or if the medication is overused for other problems such as arthritis). However, hydrocodone comes with acetaminophen (Tylenol) attached and since that does not help RLS, we like to prescribe purer drugs that only contain the opioid.

Savella is an antidepressant drug (very similar to Effexor, Cymbalta) that is only approved for fibromyalgia. This class of drug typically worsens RLS so extreme caution should be exercised before taking this drug. Although this drug works more through the nor-adrenergic pathways than the other SNRI drugs in its class (Effexor, Cymbalta), it still has enough of a serotonin effect to exacerbate RLS. This is not a drug that any RLS specialist would recommend that an RLS patient take let alone consider it as an RLS drug.

There are many other choices (such as Lyrica, Neurontin or painkillers) and you should discuss them with your doctor. It may be necessary to see a specialist to get the proper treatment for your advanced RLS condition.


Sent: Thursday, September 30, 2010 4:27 PM
Subject: Severe RLS and clonazepam?

I have severe RLS at night and with prolonged sitting. I have had symptoms for many years. A few years ago I was prescribed clonazepam which worked well for a couple of years but my RLS is getting worse and the drug is not working as it did before. I believe I tried Requip years ago and had insomnia. I am prone to insomnia so I hesitate to try Mirapex or Requip again. I am taking 1 mg of clonazepam currently.

Could an increased dose help my worsening condition ( I am 58) or am I building a tolerance to clonazepam causing it to no longer work?  If an increased dose is not a problem, how many mg can or should I be taking. Also is there another drug similar to clonazepam that I would be good to alternate with to avoid building a tolerance?

Dana

Medical Reply

Klonopin (clonazepam) is not really an RLS drug. It works mainly as a sleeping pill (it is in the same family as Valium) to help RLS patients get to sleep. There are a few RLS patients who state that Klonopin does actually relieve their RLS symptoms while they are awake (of course, with the Klonopin on board, it is very hard to stay awake) but the vast majority of RLS patients do not get relief of symptoms but rather just fall asleep easier. Klonopin has a very long half-life (40 hours) and often causes next day sedation (which is most often not appreciated by the user) and tolerance and dependence occur readily (as seems to be happening in your case).

There are better and safer drugs (Ambien, Lunesta) to help RLS patients (or anyone) fall asleep. However, if we can resolve your RLS symptoms (without causing side effects from the drugs), you may not need any sleeping pills.

It still may be worth a trial of Mirapex as side effects can be different with each dopamine agonist (they act a little different on the several different types of dopamine receptors in the brain). If that does not work, then drugs such as Lyrica are likely to help.


Sent: Saturday, October 02, 2010 8:19 AM
Subject: RLS and medication

I am 34 years old and have been suffering from RLS for about three years. As I am about to fall asleep, I feel an urge to move my legs combined with a creepy crawly feeling. This process keeps repeating itself many times as soon as I am about to drift off to sleep. I tried Requip which kept me awake and did not work for me. I then started using clonazepam which seemed to relieve the symptoms until a few months ago when my symptoms got worse.

My doctor had me try gabapentin. I started with a dose of 300 mg and have had to increase it every few weeks and am now up to 1200 mg. In addition to this, I also take clonazepam to help with the symptoms and to help me sleep. The result is that I wake up feeling like a zombie the next morning. Can you build up a tolerance to gabapentin so that you have to keep increasing the dose in order for it to be effective? I responded well to each dose for a few weeks and then had to increase it.

I am taking Wellbutrin and Lexapro for anxiety and depression. Does Lexapro worsen RLS? I am going to see my doctor as she is concerned that there may be something else going on seeing that these drugs aren't working. I am healthy and active and my iron levels have been tested. Is it likely that there is another issue occurring and is there anything else you could recommend for my RLS?

Megan S.

Medical Reply

Although your iron levels have been checked, a serum ferritin level is much more accurate to assess your iron stores. If the ferritin level is under 50 (even though labs state that normal levels are over 10-20), then iron therapy may be helpful.

Lexapro and other SSRI drugs usually worsen RLS while Wellbutrin does not. If the Lexapro is truly necessary, then you should continue with it and treat the worsened RLS. Otherwise, you may want to discuss with your doctor about stopping this drug.

Neurontin does not cause tolerance but it is not reliably absorbed from the bowel which may explain its variable effects. Higher doses like 1200 mg often cause next day sleepiness problems especially when combined with a very long acting sedative like clonazepam which is not a drug that I recommend for RLS (please see the many other letters concerning the problems with that drug). Lyrica may be a better choice than gabapentin for your RLS.


Sent: Monday, October 04, 2010 3:34 PM
Subject: Questions about gabapentin and getting off Mirapex?

I have been taking Mirapex for RLS for about 10 years now. I take .375mg early evening on a daily basis. For the last few years my symptoms have occurred more and more earlier in the day. I also now experience symptoms in my arms. My doctor suggested that I try gabapentin with the Mirapex and gradually, over time, wean off from the Mirapex.

Could you please tell me what you think of this plan? If you agree with it, what dose of gabapentin would you start me at and how quickly would I wean off the Mirapex? I am very anxious about changing medication because of how my life was before I started Mirapex.

Beverly,
BC, Canada

Medical Reply

It sounds as if you are experiencing augmentation from taking Mirapex and most experts would recommend stopping the Mirapex. There is mixed opinions on whether the Mirapex should be stopped abruptly or tapered slowly (similar to pulling a bandage off quickly or slowly). My preference is to stop abruptly and treat the worsening RLS symptoms (they will be markedly worse for about 1-2 weeks) with a potent opioid (oxycodone, methadone). With proper treatment, the acute withdrawal phase should not be a problem and after 1-2 weeks they RLS symptoms should be back to where they were prior to taking Mirapex.

Gabapentin is a reasonable choice but this drug has unreliable absorption from the gut and dosing is unpredictable. I prefer using Lyrica which tends to work more reliably and has fewer troublesome side effects. You may need lower potency opioids or tramadol with the gabapentin or Lyrica for complete control of your RLS symptoms.

A Reply from Beverly

Sent: Tuesday, October 05, 2010 6:40 AM
Subject: RE: Questions about GABAPENTIN

1) What are the chances that I can return to dopamine medications (perhaps Requip) after the 1-2 weeks withdrawal from Mirapex and have them still be effective?

2) I would really like to not use any opioids after I go through withdrawal. If I switch over to gabapentin or Lyrica what is the likelihood of managing the symptoms and at what dosage should I be on?

Beverly,
BC, Canada

Medical Reply

Unfortunately, once augmentation occurs it is very likely that it will occur again with the reintroduction of another dopamine medication (and often will be much worse). Some patients have been successful by keeping the dose very low and combining it with another class of RLS medication (such as with Lyrica or gabapentin) but that is a very small minority and most do not do well.

It is very difficult to predict whether any medication will be successful let alone after an episode of augmentation. Dose guidelines are noted on our Treatment Page.

A Reply from Beverly

Sent: Tuesday, November 09, 2010 6:37 AM
Subject: Mirapex withdrawal-Help

My doctor is weaning me off Mirapex while introducing another medication. This is because of the augmentation I have been experiencing for some time now. His recommendation is that I decrease the Mirapex one quarter of a .25 mg tablet while increasing the new medication. I started the reduction at .375 mg of Mirapex and am down to .25 mg.

All the doctors I have spoken to WILL NOT use a narcotic to help me withdraw from Mirapex suggesting instead gabapentin or Lyrica. At first I tried gabapentin. After many sleepless nights, when I reached 500mg, the doctor gave me 75mg of Lyrica. This had no effect what so ever. I am so exhausted and feel ready to give up. Could you please tell me what dosage of gabapentin or Lyrica might be helpful to help me wean off the Mirapex.

Beverly,
British Columbia

Medical Reply

You are clearly headed for some trouble if you continue with your doctorís plan. Getting off Mirapex can be very difficult especially once augmentation has occurred. Gabapentin (doses of up to 1200 mg have been used but most patients get next day sedation at higher doses) and Lyrica (75 mg to 300 mg) are not typically up to that task.

If your doctor does not want to give you opioids for Mirapex withdrawal then either get a referral to a doctor (neurologist, sleep specialist or other RLS specialist) who will prescribe potent opioids or get another doctor who will help you.

It may be helpful to get a copy of my book for patients, RLS: Coping with your sleepless nights (profits from this book go to the RLS Foundation). You may also consider getting my book for doctors, Clinical Management of Restless Legs Syndrome to help guide your doctor on how to treat your RLS problems.

A Reply from Beverly


Sent: Wednesday, November 10, 2010 6:12 AM
Subject: Re: Mirapex withdrawal-Help

Do you know any names of Doctors or neurologists in Vancouver, BC who could help me out. All of the Doctors/neurologists I have seen are extremely reluctant to prescribe narcotics for restless leg syndrome. There has got to be another option for me to get through this withdrawal.

Beverly

Medical Reply

Unfortunately, the only other option for getting off a dopamine agonist without opioids is to suffer. You may have to call around until you find a neurologist or other specialist who will provide the necessary treatment.

A Reply from Beverly

Sent: Thursday, December 02, 2010 7:47 AM
Subject: Re: Mirapex withdrawal-Help

I am on my 3rd day of withdrawing from no Mirapex. After 10 years of use I had to stop using Mirapex due to Augmentation. My Doctor attempted to gradually wean me off of Mirapex a month ago while substituting Lyrica. Lyrica, which I continue to take, stopped being effective at 225 mg. I have been taking opioids for a few days to try and help me get through the intense withdrawal period. I started off taking up to 2 tablets of 10 mg Oxycocet.

When those failed to work my doctor prescribed up to 2, 10 mg of OxyContin which I took last night. Those pills did not stop my restless legs. I am very sleep deprived and don't understand why the opioids are not working. Please help me. I don't know what to do to get through this withdrawal.

Beverly

Medical Reply

Most patients would be fine with those doses of oxycodone when coming off Mirapex. Clearly, you may need a higher dose but typically that last for only about 7-10 days at which point you should be able to quickly reduce the dose. Also, some people do better with different opioids and most find that methadone (which may be hard for you to get) works better than oxycodone.

A Reply from Beverly

Sent: Thursday, December 02, 2010 3:44 PM
Subject: Re: Mirapex withdrawal-Help

Thank you for your response. I am ready to give up on the opioids during the withdrawal period due to lack of success. Although I am not experiencing rls during the day I have never been able to catch up on my sleep by sleeping through the day. I was wondering about taking a sleeping pill (zoplicone) during the day just so I can manage the nights without too much sleep deprivation.

Beverly

Medical Reply

It is generally not a good idea to take sleeping pills during the day and sleep during the day. The reason is that you will quickly flip your night and day around and will start having RLS symptoms at new times (during the day). It is better to take the zopiclone at bedtime to help you sleep through the night.


Sent: Monday, October 18, 2010 9:10 AM
Subject: My RLS
 
I am a 42 year old female and I have had RLS since I was a kid although they did not have a name for it and my mom said it was "growing pains".   As I got older my symptoms have gotten worse and so I finally decided to try the Requip.  I started taking it 3 years ago with instant success but also instant augmentation.  I HAD to have the drug every single night, whereas before I could go a few months with no symptoms and then have RLS for a few weeks and then it would go dormant (for lack of a better term).  I decided that the augmentation was ok if I could get sleep so I kept taking it. 
 
I was also taking Wellbutrin 150mg 1xday b/c  I have Major Depressive Disorder but was only treating it with the low dose of Wellbutrin and thought that maybe not getting good REM sleep b/c of my RLS might be a major cause for my depression.  So 3 years go by and I can sleep but have major depression and need help to live a better life for me and my family - so off to the doctor I went again and they upped my dose of Wellbutrin 150mg x 2/day and started me on Prozac 20mg x 1/day. 
 
I am now taking 80 mg of Prozac x1 day and the 300mg of Wellbutrin and I have not felt this good in 10 years!!!  I am back to my old self - whom I had forgotten even existed.  I guess I figured I would just be depressed and angry for the rest of my life.    I can not tell you the miracle Prozac has been - I have been on so many meds over the last 10 years - WHY didn't anyone give this to me before???  So, with the Prozac comes much worse RLS - I up my Requip to 2 pills at night and I am okay - then I start getting extreme pain in my hips, thighs, and calves.  Extreme pain!  Both constant and very sharp attacks.  I decide it is the Requip and go back to 1 a day and the pain subsides but my RLS goes back to being worse. 
 
I have waited so long to feel this good - I can not imagine not taking the Prozac - My life has changed so much for the better I can not even describe it!   But, I only sleep about 4 hours a night - up and pacing, etc......
 
I don't know what to do?  I know RLS is related to low Dopamine and Requip creates that dopamine and that Prozac diminishes dopamine so I am at a catch 22!
 
Jennifer 

Medical Reply

Prozac does not diminish dopamine. We are not sure why the SSRI antidepressants (and many other type of antidepressants) worsen RLS. However, when antidepressants are essential to the health of an RLS patient, we must use the drug and treat around the side effects.
 
You do have other options. One option would be to consider Mirapex. It is another dopamine agonist similar to Requip so it might cause similar side effects. Other reasonable options include anticonvulsants (Lyrica, Neurontin) or painkillers.


Sent: Monday, October 18, 2010 10:51 AM
Subject: RLS and fibromyalgia
 
I have RLS and fibromyalgia. I have taken up to 600 mg of gabapentin but still find I wake up tired. I have recent reduced the gabapentin back to the 300 mg dose prescribed last year. However, I have had a recent flare of fibromyalgia pain and am considering taking Skelaxin so I can get some restful sleep. Is this combination safe?

Rhonda C. 

Medical Reply

The only concern about combining two drugs that cause sedation as a side effect is of course, a very significant increase in sleepiness. If you feel the improvement outweighs the side effects, then it may be reasonable to try and stay on this combination.


Sent: Monday, October 18, 2010 1:32 PM
Subject: Trouble with my RLS?
 
I am a 45 year old male who just recently has been diagnosed with RLS. I know I have had it for a long time, but just recently the pain has gotten really bad. I confirmed  my diagnosis with a neurologist. I have tried Requip (headaches ) and now am on Mirapex. Still pain I also had two surgery's on both knees and I believe I am getting arthritis.

My doctor for the pain has given me 10 mg tablets of oxycodone which work very well no pain but last very very short. What else can help with the pain?  Its really life changing and I am suffering. Also do you know any doctors in Long Island NY that understand this and can help me.
 
Edwin R. 

Medical Reply

Methadone is another opioid painkiller that does last longer but most doctors are uncomfortable prescribing the drug. I do not know of any RLS specialists in your area but there should be several. You can check with the RLS Foundation (www.rls.org) .


Sent: Monday, October 18, 2010 7:13 PM
Subject: RLS
 
I recently had surgery and was put on Percocet and Phenergan.  I know the Phenergan can cause problems with RLS, but the opiate with it has always overridden that and I've had no problems.  But since I stopped both drugs (several days ago), my legs have been worse than ever, even with all the Neurontin I always take.  I am worried that maybe taking the Phenergan for several days (every 4-5 hours) has had some lasting effect.  Can that be possible?  If so, what the heck can I do?
 
Irene 

Medical Reply

Although Phenergan typically worsens RLS symptoms very significantly, it may not have that profound effect for you personally (this worsening of RLS can vary considerably amongst RLS sufferers). However, it is very likely that the Percocet took care of all of your RLS symptoms (even those made worse by Phenergan) and stopping the Percocet is what is bringing out your increased symptoms. It is very common for trauma (such as surgery) to worsen RLS symptoms and that may be the real cause of your current problem.
 
Taking Phenergan can only worsen RLS symptoms while on the drug so you have no concerns about increased RLS once off it.  You may need other therapy for a while (or even permanently) for your increased RLS symptoms.


Sent: Tuesday, October 19, 2010 5:58 PM
Subject: RLS
 
I have been on Mirapex for many years taking Ĺ mg in the morning and Ĺ mg at night.  I have gained 60 pounds since I started taking it although I have worked out daily for over 25 years.  The doctor is switching me to Gabapentin 300 mg which isn't helping at all and I am seeing from RLS blogs that it causes weight gain too.  Is there a medication for RLS that does not cause weight gain? 

 Judy C. 

Medical Reply

Most people do not gain weight with Mirapex (and most gain only a modest amount at worst) so you might want to consider other reasons for weight gain. It is still quite possible that Mirapex is causing the majority of your weight gain but after prescribing many hundreds of prescriptions for that drug, I have seen very few problems with weight gain and none as dramatic as yours.
 
Neurontin (and my more favored anticonvulsant Lyrica) are much more notorious for weight gain problems so although they may work well, they may not be what you want to take at this time.
 
The only choices left are to try Requip (which is also a dopamine agonist and may thus cause the same weight gain as its cousin, Mirapex) or the painkillers (which of course have their own issues).


Sent: Tuesday, October 26, 2010 9:23 PM
Subject: Sifrol (pramipexole) "holidays"
 
 I am wondering how to maximize the Sifrol which works really well but becomes less effective over 3 to 6 weeks, i.e. increasing leg movements  in evenings before bed and less ability to sleep during daytime scheduled naps due to increasing leg or arm /trunk waves which keep me awake. 
Then I take at least a weeks break using Codeine and Stilnox for first few nights until I can get to sleep myself just using hot baths. 
 
I have PLMS  (last study 45/hour) with RLS (and sleep apnea and idiopathic hypersomnia, MSLT 2 minutes) and I use CPAP daily including naps.
 
I have previous experience of Permax which resulted in augmentation and rebound and so cant use that any more. 
 
Specifically:    1) am I better to have 3 weeks on and one week off?
                         2)  go for as long as possible on the Sifrol and then take  longer than a week to reset the receptors and have much longer than a week off. 
 
From sleep studies it is defiantly worth being on Sifrol, so the advice is to maximize how long I can stay on it.
 
Thanks from "Australia" belle 

Medical Reply

It sounds as if you are experiencing augmentation from Sifrol (pramipexole, trade name Mirapex here in the USA). Unfortunately, once augmentation occurs with one dopamine agonist (Permax in your case), it is very unlikely that it will not recur when trying another one. Although the holidays have been working for you, it is likely that your periods of effectiveness from Sifrol will continue to diminish with time whatever you do with these holidays.
 
What most RLS specialists would do at this point is change from dopamine drugs to either opioids or anticonvulsant drugs (or a combination of both) which should provide long term effective and safe treatment for your RLS.


Sent: Thursday, October 28, 2010 5:40 AM
Subject: Possible switch to Pramipexole after Ropinirole augmentation

GP started me on .25 ropinirole with no explanation about staying within tolerances. In order to alleviate my symptoms, I was taking 3.0 by the end of week 2.  At the same time I was taking hydrocodone after a rotator cuff surgery. It took nearly a year (and a TJR on the other shoulder) in conjunction with information from the RLS Foundation  and your book to make the connection with opioids and DAs.
 
March, 2010, 4.5 ropinirole/tramadol
I was up to 4.5mg ropinirole with GP refusing to prescribe any more hydrocodone so sent me to a neurologist. He also refused me hydro but put me on tramadol 50mg/6x day. Although my sleeping was not compromised, the side effects were extreme sleepiness, hallucinations (waking up to find myself reaching out for things that aren't there when dozing or sleeping), plus nausea within 30 minutes after taking the pills. I did not trust myself to drive up to 2 hours after taking the pills a HUGE block out of my day!
 
Sept, 2010, 5.5 ropinirole/hydrocodone
I went off Tram cold-turkey 2 weeks prior to another TJR (knee) knowing that I would be getting morphine, and oxy/hydro after the surgery. Withdrawal from tram was night sweats, runny nose, dizziness and dry heaves. Of course, the other down-side was the need to increase ropinirole dosage, which went from 4.5 to 5, to 5.5. With hydrocodone 750-500mg/6x day I have been able to pull ropinirole dose back to 5mg/day but think it may be time for a drug holiday and a switch to pramipexole.
 
What follows is neurologist recommendation for the switchover of DAs:
Week 1   ropinirole 1.5mg/3x day
Week 2   ropinirole  1  mg/3x day
Week 3   ropinirole  .5 mg/3x day
                  pramipexole .25mg/3x day
Week 4   pramipexole 1.5 mg/3x day
(Continue on hydrocodone 750-500 6x day for the time being)
 
Assumption #1: I thought all DA should be out of one's system before beginning use of another
Assumption #2: Seems very high doses of Pram with nowhere to go regarding possible augmentation
Assumption #3: With my current need for high levels of ropinirole, 6 tabs of hydrocodone 750 mg will not be sufficient to withstand the RLS symptoms. 
 
I feel I need to ask what his long-term goal is in keeping me RLS-free because if he remains resistant to introduction of hydrocodone, then there is no reason for me to attempt a switchover. Gabapentin has not been successful in my drug therapy.
 
Georgia M.
Kansas City, MO 

Medical Reply

It is difficult to diagnose your problem based on your description below. However, it is likely that you are already having issues with augmentation (especially if you are taking more medication due to symptoms earlier in the day, more intense symptoms with time as you increased your Requip and if you had any extension of symptoms to your arms). Your dose of ropinirole (Requip) was very high and your proposed dose of pramipexole is extremely high (total 4.5 mg of pramipexole = 9-18 mg of ropinirole).
 
When switching from one dopamine agonist to another (usually for reasons of tolerance or augmentation), it is wise to have a drug holiday of several weeks.  However, this usually works only when the problems that occurred with the dopamine agonist where relatively mild. For more severe problems (like severe augmentation symptoms), the likelihood of the new dopamine agonist working better are very slim.
 
Typically, in situations such as yours, stopping the dopamine agonists completely and changing to a higher potency opioid (oxycodone, methadone) with an anticonvulsant like Lyrica (since you could not tolerate gabapentin) would be a reasonable option with a high chance of success.


Sent: Monday, November 01, 2010 8:23 AM
Subject: Progesterone and RLS in men?

I am about to start synthetic progesterone.  I would appreciate your views if this would worsen RLS.

Louis B. 

Medical Reply

Little is known about the effect of progesterone on RLS. We do hear that many women are affected (positively or negatively) by progesterone and estrogen (typically taken together so we donít know how that applies to your case).
 
Let us know how you do.


Sent: Tuesday, November 02, 2010 9:36 AM
Subject: Lots of trouble
 
I have had RLS for many years, since I was a kid.  I have been on Requip for several years.  I am now at 4mg 1 time before bed.  I recently called my doctor because I am still having trouble.  He bumped me to 5mg 3 times a day.  I questioned this amount, as did my pharmacist.  I told him I would be sleeping at work.  He then canceled it and said he wanted me to see a neurologist. 

I don't see the point in seeing the neurologist.  When I asked the doctor he gave me a roundabout answer that made me feel more uncomfortable.  Do you think it is reasonable to see a neurologist or just have my meds adjusted? 
 
Laurie P. 

Medical Reply

It is actually very reasonable to see an specialist with better knowledge on how to treat RLS considering your current problems. Requip at 4 mg is already a very high dose (the 5 mg three times daily is out of sight for RLS patients) and since your doctor recommended treating your RLS with Requip doses earlier in the day, I am assuming that you are experiencing symptoms earlier in the day (which would make the diagnosis of RLS augmentation due to Requip very likely).
 
Treating augmentation can be very tricky and most doctors including many neurologists do not know enough about this problem to treat it properly. I suggest you seek out a specialist (neurologist, sleep specialists, etc.) who states that they are current with this issue.
 
It may be helpful to get a copy of my book for patients, RLS: Coping with your sleepless nights.  You may also consider getting my book for doctors, Clinical Management of Restless Legs Syndrome to help guide your doctor on how to treat your RLS problems. Both these books have a complete discussion on how to treat RLS and your potential problem with RLS augmentation from Requip.


Sent: Tuesday, November 02, 2010 7:43 PM
Subject: RE: Chemotherapy
 
Thanks. I know that nothing should be affecting my RLS, but it has been very bad since I started the chemotherapy. The chemotherapy seems to have hit every weak spot in my body causing me a lot of pain and discomfort in all sorts of places where I was hurt before. Perhaps it has done the same with the RLS. I don't know. Just guessing.

Dale K. 

Medical Reply

Anything that increases your general discomfort and stress level may easily worsen RLS. If you are having a tough time with your chemotherapy as you are describing, it is somewhat expected that your RLS will worsen also. 

A Reply from Dale

Sent: Thursday, November 04, 2010 3:30 AM
Subject: RE: Chemotherapy
 
I have been under incredible stress before the chemo. From the day it started, the RLS has just got out of hand. This is before the side effects kicked in. Could it be possible that some of those drugs could be doing it? I hate to be a pest, but the RLS is very bad.
 
Dale K.

Medical Reply

It is always possible that one of your drugs could be exacerbating your RLS but none of the medication that you are currently taking (I just reviewed your list) are known to worsen RLS. If one of the drugs is the culprit then that would be a very unique reaction experienced only by you (which makes the odds very low that they are a factor).


Sent: Wednesday, November 03, 2010 5:51 PM
Subject: Just curious....
 
I have been a RN for 11 years (just so you know my background).  I just happened on this web page and thought I would ask a question.
 
I used to be able to take ALKA-SELTZER cold medicine, or diphenhydramine hydrochloride (Benadryl) and it would leave me feeling drowsy.  Now if I take something like this it actually makes me feel very restless and nervous and makes me feel like I have RLS (not that I know what it feels like, nor have I been diagnosed).  A couple of weeks ago I took a Phenergan suppository for nausea and it made me rest really well at first, but when I woke up I felt like I was crawling out of my skin.  All over body restlessness and antsy, a very horrible feeling indeed.  This is a very frustrating experience. 

Sometimes I get the creepy-crawly antsy leg feeling at bedtime without any medicine being in my system.  I sure hope that does not turn out to be a regular occurrence!
 
I have had 3 major surgeries and a lot of pain and stress over the past year, could this be adversely affecting my nervous system somehow and making me extra sensitive?
 
Tammie 

Medical Reply

It would be hard to explain your symptoms unless you do have RLS.
 
Below are the 4 essential criteria for diagnosing RLS:
 
1)    An urge to move the legs, usually accompanied or caused by uncomfortable and unpleasant sensations in the legs.  (Sometimes the urge to move is present without the uncomfortable sensations and sometimes the arms of other body parts are involved in addition to the legs.)
 
2)    The urge to move or unpleasant sensations begin or worsen during periods of rest or inactivity such as lying or sitting.
 
3)    The urge to move or unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.
 
4)    The urge to move or unpleasant sensations are worse in the evening or night than during the day or only occur in the evening or night.  (When symptoms are very severe, the worsening at night may not be noticeable but must have been previously present.)
 
 
If you do not meet the above 4 criteria, then you most likely do not have RLS.
 

A Reply from Tammie


Sent: Wednesday, November 03, 2010 9:56 PM
Subject: Re: Just curious....
 
My background is:  I am a 43 year old female who is thin, athletic, driven and I work in the ICU as an RN. I take Ambien 5-10 mg at bedtime as needed, plus Lortab 5/500 for my shoulder pain and recently I started clonazepam 0.25 mg, as needed for anxiety.
 
My question is this:  When I drift off to sleep I sometimes find that my abdomen/stomach area is lurching up and down.  You can physically see it moving up and down and this only happens when I am starting to fall asleep.  I feel like I am having electricity travel through my body when I am trying to fall asleep causing my stomach or my legs and arms to jerk.  Have you ever heard of anyone's stomach "jumping" when falling asleep? The more I try and deep breath and relax, the more vigorous the jerk in the stomach.
 
Many years ago I took care of a patient who also complained of this and everyone sort of rolled their eyes at this and thought it very bizarre and since then I have been too embarrassed to ever mention it to my doctor.
 
I  do have some violent episodes when I fall asleep and I jerk and kick and hit a lot. My husband always jokes that the sleeping with me is like going 10 rounds in the boxing ring. The clonazepam seems to help with the violent limb jerks, but not the abdominal jerking. Occasionally when I am falling asleep I hear a loud noise like a thunder clap in my head and it wakes me right up in a start.
 
As far as the RLS as you explained below, I have all of those symptoms, but not on a regular basis, I'm just worried that it will become a nightly ordeal.
 
I would really appreciate learning what you think of my bizarre symptoms and if you think I should see a specialist for my sleeping/ jerking/creepy-crawly leg issues that don't happen all of the time, but happen enough where it is starting to bother me.  I'm certainly not keen on taking any more medicines than I have to.
 
Tammie 

Medical Reply

Since you do meet the 4 criteria, it sounds like you are suffering from RLS. As such, your leg jerks (called PLM) are very typical in that over 85% of RLS patients have these PLM. It is not unusual for the arms to jerk also so that may explain those symptoms. It is much less common for abdominal muscles to be involved but I guess that is also possible.
 
The jerking/waking up with a start you get when you are falling asleep is likely not due to PLM but rather to something called hypnic jerks (also called sleep starts) which is a common occurrence for many people.
 
There is another possibility for the cause of your nighttime movements. REM behavior syndrome might cause similar movements but a sleep study would be necessary to prove that (the treatment for REM behavior syndrome is clonazepam). It is therefore very reasonable to speak to your doctor about these issues. Unfortunately, these problems may be above the capability of a general practitioner and you may need a referral to a sleep specialist.
 
As far as treatment for your RLS, medication is only necessary when the symptoms are significant enough to warrant drug therapy. This is similar to treating back pain. Mild symptoms can be ignored but once they interfere with your life and well being, medication should be taken.


Sent: Thursday, November 04, 2010 1:45 AM
Subject: Ropinirole RLS and dark stools
 
I have hereditary RLS that I have put up with most of my life. I am 63 now. This year, my symptoms have become considerably worse and one week ago my doctor prescribed Ropinirole. I have found that the minimal dose of 0.25 mg relieves my buzzy legs and PLMS sufficiently to enable me to get a better nightís sleep, though not a perfect one, as I still do not sleep long enough, (though I supplement the inadequate night with a midday siesta).

My doctor has agreed that there is no need to go to a higher dose while this starter dose is proving effective. However, I have noticed that, even on this minimal dose, my stools are dark in color and firmer than normal. Could you please tell me if this is all right? If I need to increase the dose, I imagine that this will become even worse. I am not taking any iron tablets but have been taking Tareg 80 mg for raised blood pressure, for the past- week only.

Christine C. 

Medical Reply

Your doctor is correct in that the lowest dose of ropinirole that works is the correct dose.  I have not heard of ropinirole causing changes in stool consistency or color before, so that may be a reaction that is unique to you. As long as the darker color is not due to blood in the stool (which can be easily checked by doing a stool occult blood test that can be supplied by your doctor), then this should not be a significant medical issue.


Sent: Friday, November 05, 2010 5:17 AM
Subject: RLS worse with prednisone or Flexeril?
 
You were suggested to me as someone who might be able to help me.  My restless legs had been under control because I take methadone for chronic pain. Recently I was hospitalized for unrelated pain problems.  During the second hospitalization I was given Ativan, Flexeril, and Lopressor.  That night the RLS came back with a vengeance.  It was assumed at the time it was because they had forgotten to give me my methadone (they had given me morphine). 

After I got home, I was no longer on Ativan but was still taking Lopressor.  I was still taking Methadone and Demerol for pain in addition to 40 mg of Prednisone..  The last two were started in the first hospitalization w/o incident.  I had my last small amount of Lopressor yesterday morning and the last Flexeril the previous morning about 3 a.m. The RLS and pretty much all body agitation lit up last night. 
 
Now I'm stumped.  Could either the Demerol or prednisone be to blame?  Could it be that one of the most recent meds started this up again, and it will just take time for it to calm down.  FYI, in the past I tried Requip, Mirapex, Permax, Sinemet, Ritalin, Neurontin, Tegretol, Lamictal, Ultram, Topamax, and Antera, all with negative side effects.  Obviously, I am very sensitive to meds.  Recently when I was in the hospital I was told by more than one person that they had never seen such a long list of negative reactions. Don't know how that fits into the situation. I would appreciate any opinion you have.  It isn't that my docs haven't tried.

Ron B., age 72 

Medical Reply

It is very difficult to figure out what is going on with your RLS. Normally, prednisone and Flexeril have no affect on RLS symptoms.  Demerol, like all other opioids should only help RLS symptoms.
 
I suspect it would take a lot more thorough detective work to determine the cause of your RLS exacerbations (and even then, we might not be able to find out what is causing your troubles).


Sent: Sunday, November 07, 2010 9:43 PM
Subject: Requip and Insomnia?
 
Is insomnia sometimes a side effect of Requip?  I have taken a low dose of Requip (.25 mg) during the afternoon and again at bedtime for the last several years to control my RLS and it has worked well. 

However, about that time I began having trouble with insomnia.  I sleep 2 to 3 hours and then wake up, and am usually awake the rest of the night.  I have been treated at two large sleep clinics for insomnia with no improvement.  Could Requip be causing it?
 
Sleepless Sue 

Medical Reply

Although the more common side effect of Requip is increased sleepiness, a significant amount of RLS patients get insomnia from this drug. It is possible that Mirapex may work better, but it is reasonably more likely that it will cause the same problem. You may want to consider other classes of RLS drugs such as anticonvulsants or opioids. 

A  Reply from Sue

Sent: Monday, November 08, 2010 6:17 AM
Subject: Re: Requip and Insomnia?
 
I have tried several opioids before (methadone, oxycodone, codeine) as well as tramadol and Mirapex.  They all relieve RLS but give me insomnia.  I'll look at the anticonvulsants again, as well as non-drug therapies. 

Sleepless Sue 

Medical Reply

When I hear someone gets insomnia with all those very different types of drugs it makes me wonder if the problem is due to the drugs or just due to a significant underlying insomnia problem. The anticonvulsant drugs often cause sedation so they may help you get to sleep. 

A  Reply from Sue

Sent: Thursday, November 11, 2010 6:05 AM
Subject: Re: Requip and Insomnia?

I'm trying Lyrica, 25 mg. My doctor said to continue my afternoon Requip .25 mg dose and take Lyrica at bedtime for a few days, then switch to Lyrica for both doses. Tuesday night I took Lyrica at 10:30, slept 6 hours with RLS symptoms starting about 5am. Last night I took Lyrica at the same time, RLS started about 3am and by 5 it was severe - worst flare up I've had in several years.

So far Lyrica might let me sleep but my RLS is much worse. Does it need more time to build up in my system or should it relieve RLS right away if it is going to? At what point should I try a different anticonvulsant - perhaps Neurontin?

Sue

Medical Reply

The Lyrica dose should work right away. It does not really build up if taken only once daily (it will when taken twice daily in which case it reaches steady state in about 5 days). We increase the dose of Lyrica every week to avoid side effects. You may need a higher dose of Lyrica as the maximum effective dose is up to about 300 mg.

If you stopped your evening dose of Requip (this is not very clear from your letter), then you can expect a week or 2 of worsening RLS symptoms (especially in the first 3-5 days which would correspond to your worsened symptoms). Therefore, it may not be fair to say that the Lyrica is not working that well.

A  Reply from Sue

Sent: Sunday, November 14, 2010 7:23 AM
Subject: Re: Requip and Insomnia?

I'm now taking 25 mg of Lyrica in the afternoon and again at bedtime, and have reduced my Requip dose by 1/2. I'm tapering off Requip and should be completely off in about 2 more weeks. I've gone from 3 or 4 hours of sleep a night to about 6, my RLS is well controlled so far, and I feel much better! I'm hoping my sleep time will continue to increase as the dose of Requip goes down.

Thanks for your help, and for this great web site! It's such a relief to finally get some sleep, and I wouldn't have known about Lyrica without you.

Sleeping Sue


Sent: Monday, November 08, 2010 7:34 AM
Subject: RLS what else?
 
I am 57 year old female and have dealt with RLS for 35 years, off and on.  The last 7 years have been extremely bad.  I have been on Requip to a strength that made me sick, so we switched to Mirapex which worked also but then I started getting episodes as early as 5 pm and then run off and on all night.  Finally the doctor said to come off it, and immediately I quit having the early onset, but nighttime was a torturous time with episodes every 2-3 hours and taking a good 45 minutes to get them to stop. 
 
I went to a Neurologist and he tried Lyrica which did nothing and now I am on Stalevo 100 mg.  Seems to be working most of the night so far, usually my symptoms start up around 6 am now.  I donít feel I am sleeping real good, (of course better than I was) and in the evening I find myself very agitated and then get anxious.  I have Xanax on hand, but am afraid to take it while on the Stalevo. 
 
Is it okay to take Xanax, and/or is the Stalevo causing the anxiety, and should I try something else in that case or add the anxiety medicine early evening??  I have no pain with my RLS only the jerking and creeping feelings, and many times in the small of my back.  Looking for a better medicine as anxiety is not something I handle well. 

Linda L. 

Medical Reply

Unfortunately, youíre the doctors that you have seen so far are not that knowledgeable about difficult RLS cases like yours. The earlier onset of RLS symptoms that you were experiencing with Mirapex is called augmentation and stopping Mirapex is the correct thing to do. However, the RLS comes back with a vengeance upon withdrawal of a dopamine drug as you already know all too well.
 
Stalevo is not a drug that we use for RLS as it contains Sinemet (carbidopa/levodopa) which causes severe augmentation problems (much worse than what you experienced with Mirapex).  This is not a drug that RLS specialists use on a daily basis. You could take Xanax with Stalevo, but you donít really want to be on the Stalevo in the first place.
 
For cases like yours, most specialists would advise the use of opioids until your RLS symptoms calm down. At that point, Lyrica or other anticonvulsant drugs may work much better.
 

A  Reply from Linda

Sent: Monday, November 08, 2010 5:05 PM
Subject: Re: RLS what else?
 
Thank you so much for you reply.  I had never heard of using the Pain killers with RLS (as I have no pain with it) Those would I guess be the opiates.  You mentioned until my symptoms calm down, how would I know that?  It seems either I have it or it is controlled by drugs.  If I stop the drugs, I have it.  I have been on the Stalevo 100 mg for 2 weeks now, with pretty much no episodes, but I have the tense anxious feeling most of the late afternoon to evening as I said. 

If I went off of it, would you suggest easing off or just stopping?  I will talk to my Neurologist about these other medicines.  I do worry about their effect on my organs long term.

Linda L. 

Medical Reply

The painkillers include tramadol and the opioids. When stopping dopamine drugs (Mirapex, Sinemet, etc.) the withdrawal worsening of RLS lasts about 1-2 weeks. After that period, most RLS sufferers are back to baseline (where they were before starting on the dopamine drug, so there will still be RLS symptoms bothering you that need some treatment). At that point you can slowly lower the painkillerís dose (under guidance from your doctor) until symptoms are reasonable. Adding Lyrica or gabapentin may help reduce the amount of painkillers that are needed but may not eliminate the need for painkillers completely (depending upon the severity of your RLS).
 
It may take several weeks or longer before augmentation occurs with Stalevo, but most patients will develop this sooner or later. It was thought several years ago that the critical dose of levodopa was 200 mg or more (you are on 100 mg) per day and certainly this problem is dose dependent but augmentation occurs all too frequently even with the lower doses (and especially when it has already occurred with another dopamine drug).


Sent: Tuesday, November 09, 2010 5:16 AM
Subject: Quick RLS question

I live in a very rural area (central Maine), and my physician seems to be depending on me to guide him on treating my RLS. I've had RLS about 5 years now. It has gradually grown more obtrusive, though it waxes and wanes. I've been increasing my meds to keep up. I was taking three 300-mg Neurontin for many months, then needed four, then five... My physician and I thought I might be able to cut way back on Neurontin if I started Requip, but that hasn't happened.

Right now I'm taking three 0.25mg Requip and four 300 mg Neurontin capsules at bedtime. I've tried cutting back to 3 Neurontin but wind up waking quite restless after 5 hours sleep (and can't take another pill then because of somnolence--I have to drive 30 miles to work).

I sometimes need to do brisk exercise just before bed to wear out my legs. I'm 63 and have been drinking one glass of red wine with dinner for years. When I feel the restlessness starting up, I sometimes have a second glass to help the meds make me sleepy. I generally sleep soundly and awaken able to start the day.

Is this too much medication? I'm wondering if I'll have to keep gradually increasing the dose.

Sharon S.

Medical Reply

It is hard to give you definitive advice based on your limited description. However, there is room to increase the Requip as .75 mg is not that high a dose. Typically, Requip or Neurontin are taken about 2-3 hours before bedtime so that they can kick in when you are ready to sleep (most RLS patients have their worst symptoms just when they get in bed). If the Requip (which should be slowly increased and please discuss this with your doctor) gets up to about 2 mg with no improvement, then that likely is not the medication for you. Mirapex (about 2 or more times potent than Requip) may work better for you but only trial and error can determine that.

Gabapentin typically causes sedation at therapeutic doses so your complaints are no surprise. You may want to discuss changing to Lyrica with your doctor.

If the above suggestions do not help, then painkillers are the next option that works for most RLS sufferers.

A Reply from Sharon

Sent: Wednesday, November 10, 2010 1:40 AM
Subject: Re: Quick RLS question

Thank you--I appreciate your help. The sedation isn't a problem, as long as I take the Neurontin no later than 8pm (I get home then, eat, and go right to bed so I can get up at 4am). I just can't take any in the middle of the night if I awaken restless. Could I take an additional Requip at, say, 2 am if needed, or would that be sedating?

I'll stay at the current dose of Neurontin. If my RLS symptoms continue to increase, I'll raise the Requip 0.25 at a time, (consulting my doctor).

Sharon S.

Medical Reply

Although Requip may cause sedation in some patients (and strangely enough, insomnia in others), most patients do not experience sedation problems. They only way to tell if higher doses will cause side effects is to try them.

Taking an extra Requip for RLS symptoms at 2 am should not be very helpful as it takes an hour or more for the drug to kick in. If you do need immediate relief for unexpected RLS symptoms, painkillers (tramadol, hydrocodone, etc.) may onset in 15-30 minutes to relieve those symptoms.


Sent: Friday, November 19, 2010 6:53 AM
Subject: Gabitril for RLS?

I have restless legs and I am currently on Remeron 15mg and Ambien. My doctor thinks I should substitute Gabitril for RLS. I am  not an epileptic and want to know if  Gabitril is safe for people who never have had seizures? Also is 20 mg of Ambien too dangerous to take?

JCR

Medical Reply

Remeron usually makes RLS worse so changing this drug may be helpful. Gabitril has not been studied much for RLS but may have some benefits. Other anticonvulsant drugs (like Lyrica and Neurontin) have been proven to more successful for treating RLS. The anticonvulsant drugs are used more often in people without seizures so that is not a problem but they do have side effects (such as sedation, dizziness, etc.).

Ambien is only approved for up to 10 mg here in the USA but in Europe, doses up to 20 mg are approved. However, higher doses of any sleeping pill can cause problems especially in senior patients who get up at night to go to the bathroom and do not wake up sufficiently to avoid falling (and possibly breaking a hip).


Sent: Tuesday, November 23, 2010 3:14 PM
Subject: RLS + Peripheral Neuropathy + Sleep Apnea

For the last 4 or 5 years Iíve been taking Ambien (10 mg) or, more recently, Ambien CR (12.5 mg) each and every night to help bring on sleep. I suffer from RLS and also Peripheral Neuropathy of my feet. Something which further complicates my sleeping habits is the CPAP mask which I must wear each night, due to Sleep Apnea. The medications I am currently taking are:

ē Ambien CR (12.5 mg) once per night (to supposedly bring on sleep).
ē Allopurinol Tabs (300 mg) once per night (to prevent a Gout attack). (I have only one kidney and had two gout attacks about 4 years ago.)
ē Fenofibrate Tabs (160 mg) once per night (for high cholesterol).
ē Requip XL (2 mg) two pills per night for RLS.
ē Lyrica Caps (75 mg) once per night for Peripheral Neuropathy.

Periodically, (the last few nights for example) I have also taken one Hydrocodone  (7.5/750) Ė for back pain, about two hours after having taken the above list of pills, since I could not fall asleep (nor was I even tired). Iíve tried taking the list of pills at 9 p.m., 10 p.m. and 11 p.m. and it still takes me until close to 1:30 a.m. before I fall asleep and I wake up (without an alarm clock) at 5:30 a.m. every day of the week. I consume very little alcohol per month and Iíve never smoked Ė if that matters.

All these pills are not giving me the relief I was expecting. Iím tired of living on pills and not getting more than 4 hours sleep per night.

Roger

Medical Reply

It is not completely clear (and may not be in any case) why you are not falling asleep. Are you having any discomfort from the RLS, peripheral neuropathy or back pain that is not adequately being relieved by your current medication? If these issues are not significantly affecting your ability to fall asleep then you may be suffering from primary insomnia (insomnia not due to another medical condition). This is harder to treat but before I give you any suggestions I want to make sure that there are no other extenuating circumstances.

Also, did you suffer from insomnia before you developed RLS, peripheral neuropathy and back pain?

A Reply from Roger

Sent: Wednesday, November 24, 2010 3:41 PM
Subject: RE: RLS + Peripheral Neuropathy + Sleep Apnea

Thank you for your quick response. As a younger man, in my 30s and 40s, I used to fall asleep before I hit the pillow. If I woke up at night from one of my three children crying, I was able to get back to sleep without a problem. RLS started when I was in my 50s and I didnít take any medication for a number of years. The peripheral neuropathy started during a vacation to Italy in the spring of 2006 Ė I think I did something to my back dragging around all the luggage for my wife and myself and some friends.

In my opinion, my insomnia (failing to fall asleep) is a result of my RLS. I go to bed and my legs and feet really start bothering me Ė to the point where I cannot get comfortable. My doctor told me to try and fall asleep for 20 minutes and then get up. Instead, I give it up to two hours. I start to drift off only to be disturbed in my lower extremities. At 1 a.m. I get up and shoot a little pool in my basement and then go back to bed and am able to get to sleep around 1:30 a.m.

One thing I do notice is that I cannot fall asleep until Iíve urinated a second time (first being before I go to bed). Only after that second urination do I seem to be able to get to sleep. I am not sure if that has anything to do with my insomnia and Iím also wondering if I am becoming immune to the medications I mentioned since Iíve been taking them so long. However, I fear not sleeping at all if I stop them. One night I dropped my Ambien CR and didnít realize it. I didnít fall asleep until about 4:30 a.m., and woke up at 5:45 a.m. to get ready for work, only to find the pill on the kitchen floor.

Iíve been to two neurologists in Greenwich, CT and Port Chester, NY. I also went to NY Presbyterian Hospital in NYC and to an acupuncturist where I had two EMGs and nothing was found other than a little carpel tunnel in my wrist Ė I worked behind a keyboard most of my life as a programmer. I am a bit over weight, weighing 240 when Iíd like to be below 220 and Iíve read some of the medication does tend to cause weight gain. I know I need more exercise and donít eat properly Ė loving my red meat. Can diet and weight loss help resolve these issues?

Roger

Medical Reply

Since it sounds as if your sleep onset insomnia is mostly due to persistent RLS symptoms, the best plan would be to treat your RLS more aggressively. There are several choices available to treat your RLS. One (probably my first choice) would be to slowly increase the dose of Lyrica (to a maximum of 300 mg 2 hours before bedtime) as this should help RLS, peripheral neuropathy and help promote sleep.

You could also consider increasing the ropinirole but as you already are taking a high enough dose at 2 mg, I would leave that alone for now. Adding a nightly opioid (such as your hydrocodone) might also be helpful.

Although losing weight with a proper diet is a good idea anyway, it will not improve your sleep or RLS problems.




















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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 93.
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