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Sent: Monday, January 04, 2010 9:22 AM
Subject: RLS sufferer for 10 LONG years
I've suffered with RLS, worsening over the years for 10 years. I
started out like so many others with other medicines, narcotic meds work
WONDERFUL but can't stay on them forever. I've been taking Neurontin for about 7
or 8 yrs I think and have worked my way up to 800mgs 4x at bedtime and
sometimes/most times that does not work so I end up taking a few more until I am
finally able to sleep. I work a full time job and I MUST sleep. I've spend many
nights on my knees with my face in the pillow crying or pounding on my legs
because they just hurt so badly.
I've seen on your site that you are a huge supporter of Mirapex. I moved to Alabama about a year and a half ago and it's hard trying to convince a new doctor that YES my doctor was prescribing THAT much Neurontin and YES I TRY to not take more that 4 but it's just a battle, not to mention the insurance companies that say you are refilling your prescription too soon, etc..etc...please help.
I read somewhere that Quinine in Tonic Water is supposed to help. Any truth there??
You are not clear whether you tried Mirapex and it did not work.
I do like the use of Mirapex and Requip especially as they are the only
currently FDA approved drugs. If you had problems with them, then of course they
are not for you.
The maximum dose of Neurontin is about 1200 mg for any one dose (given to a maximum of 3 times per day). Again, it is not clear whether you are taking 800 mg at bedtime (which is a reasonable dose) or 3200 mg at bedtime (which would be an incredibly high dose).
Opioids, under proper supervision can be taken indefinitely and work well for many RLS patients.
Quinine does not help RLS but does help prevent leg cramps. There is extremely little quinine in tonic water so even that would not help leg cramps.
A Reply from Suzie E.
Sent: Tuesday, January 05, 2010 7:30 AM
Subject: RE: RLS sufferer for 10 LONG years
Let me qualify. I am taking the Neurontin at bedtime, my legs usually start to ache/tingle/hurt about 4-6pm and sometimes I'll take half a tablet then another half and by the time I go to bed at about 10-11pm I've taken my 4-800 mg tables and sometimes still cannot get to sleep because of the kicking and aching, at which time I take more of the Neurontin. Sometimes I get the aching, tingling during the day especially when the weather is wet or there is wet weather coming. (I have really bad nights when the rain comes). If I take enough I do finally get to sleep is my point.
I have never taken Mirapex and I am going to ask for it to see if I can take that instead. I've gained a lot of weight and I heard or maybe read that the Neurontin will cause weight gain. Would I have the same issue with Mirapex?? I did take the Requip and for I while I thought it was working but then I was taking too much of that too and my doctor switched me back to the Neurontin at my request. I forget what side effect I was getting but I didn't like it.
Would I need to supplement the Mirapex do you think with an opioid? I feel like if I ask for one the doctor might think I am just fishing for that. I've never asked him for it but still, to just say, I need something stronger than extra strength Tylenol. I don't know. If I am taking Mirapex would I be taking it all day or just at night?
And I'll steer clear of the Tonic Water since it won't help.
Your dose of Neurontin is over the limit for most doctors. What
I use to keep the dose of any one drug within reasonable limits is to add other
drugs at lower doses (this is described in my books).
Weight gain is usually not much of issue with Neurontin but is more of an issue with the other commonly used anticonvulsant, Lyrica. Mirapex can cause some mild weight gain in a small percentage of patients.
You might want to see a more knowledgeable RLS doctor who can accomplish correct therapy.
Sent: Tuesday, January 05, 2010 6:25 PM
Subject: Question about What My Doctor Prescribed for my RLS
FIRST, THANK YOU!!!!!!!! I felt as if I were alone in this and no one knew what I was going through. Your site has been a wealth of information for me. Thank you for starting and keeping it up.
I have had RLS for about 15 yrs of which an official diagnosis has only been in my chart for about 5. My PCP agreed to prescribe Requip which I used for a few years at the 1mg dose. At the same time I was dealing with Kidney Stones and was on Vicodin. I thought the Requip was working when in reality now I know it was most likely the Vicodin. Once I was rid of my stones and did not need the pain meds anymore the RLS kicked back into extremely high gear. I went back to my PCP who said to stick with the Requip and upped it to 3mg. This dose is not working and makes me feel like I want to crawl out of my skin all together and not just my legs. I have stuck with it for two months with little to no results.
Over the last week or so I have researched the RLS issues and was referred to a local Neurologist from the RLS.ORG website. Today I saw him and he prescribed the following:
Klonopin 2mg 1 @ 8:pm
Mirapex 1mg ˝ @ noon, ˝ @ 5:pm, and 1 @ 8:pm
Stalevo 75mg 1 @ noon and 1 @ 8:pm
Bystolic 5mg 1 @ 8:pm (My blood pressure was high when I saw him which is not normally the case)
Vicoprofen as needed to cover the really bad episodes.
Now, my concern is this first. After reading your replies you say that the Stalevo is NOT what should be used because 75 – 80% of RLS patience’s see even worse results. Second from what I’m reading the Klonopin is highly addictive and has awful side effects or withdrawals if stopped with out some type of taper down or switching to a drug like Phenobarbital. Other than the RLS and being about 75lbs over weight, I am healthy. All of these drugs seem over kill.
Am I just paranoid? My days are mostly ok because I am working. When ever I am doing manual labor or up and down stairs all day and my mind is busy I’m ok. It’s at night or evening when I start to wear down or after a big meal and at bed time, forget it. I could cut my legs off sometimes it’s so bad.
Please give me your thoughts on what my doctor has just prescribed. Also, I filled the Vicoprofen, Klonopin, and was given samples of the Bystolic. My insurance has a $500 drug deductible before it kicks in and it just started over with the new year so I could not afford the $179 Mirapex right now. My thoughts were to take the Vicoprofen and the Klonopin for the next few nights a few hours before bed time and then just the Klonopin and see how that works. If the Klonopin by it self does not work then fill the Mirapex and try that as well as prescribed.
Thank you in advance for your assistance. I am at wits end, not to the point of anything drastic except maybe smashing my head through a wall or throwing my stupid brother in law into the lake. HAHA a little humor in this not so very funny situation.
Henry P. M.
Although there is not one correct way to treat RLS and there is
considerable variation amongst RLS specialists on how to treat this disorder,
the majority of the experts would not use the medication that your neurologist
has prescribed for you. Klonopin was considered one of the drugs of choice for
RLS until about 15-20 years ago (it is still used very commonly by many PCP’s
who are not current on RLS). You can read many of the letters/answers on this
drug on our site by doing a search to find out more about this issue.
Phenobarbital is not used for RLS or sleep any longer and is not recommended.
Your dose of Mirapex is in the upper ranges but if it is helping, then that is fine if you can afford the drug.
Stalevo is not really used for RLS as the levodopa that it contains leads to worsening of RLS called augmentation. I would stay away from that drug.
Vicoprofen does help RLS but that is due to the hydrocodone (same as in Vicodin). The added ibuprofen in that drug does not help RLS so can only cause side effects without offering any benefit. You could find a compounding pharmacy to make up pure hydrocodone (likely will cost you much more) or use a smaller dose of a more potent opioid.
A Reply from Henry
Sent: Wednesday, January 06, 2010 10:41 PM
Subject: RE: Question about What My Doctor Prescribed for my RLS
I currently can not afford the Mirapex. I filled the Klonopin and am trying one at night before bed with a Vicoprofen if things are really bad. I have samples of the Stalevo from my neurologist but have not started taking them based on your recommendation. It seems based on mostly your site as well as others I have researched that what he has prescribed is old fashion.
My RLS has been extremely bad the last few weeks and especially the last few days with little to no sleep. Last night when I took the Vicoprofen and Klonopin for the first time I slept all night. I found this doctor in the “Find a Doctor” section of RLS.ORG. Do they even check these doctors out or make sure they are current on the RLS treatments of this century?
Henry P. M.
The list maintained by the www.rls.org foundation merely contains doctors who claim that they treat RLS (this was started over 10 years ago when most doctors did not even acknowledge that RLS was a real disease, let alone want to treat it) and leaves no assurance that any doctor on the list has adequate expertise to treat the disorder.
Sent: Wednesday, January 06, 2010 11:33 AM
Subject: Help needed-RLS!
I am a 33 year old male who has a history of both restless legs syndrome and bipolar disorder in my family. I currently am a full time college student and I suffer from severe refractory restless legs syndrome and bipolar disorder as well (it is maintained and I am currently stable).
Currently, I take the following "life saving" medications (as these meds have been of great help to me):
Depakote (1,000mg a day)
Klonopin 0.25 to 0.50mg a day)
Neurontin (2400mg a day)
Ambien (10mg a day)
and Methadone (30mg a day)
This leads me to my question and I hope you can at least offer some advice. My RLS is still present, but is well maintained and the Methadone has worked wonders. Unfortunately the doctor at the Center for Pain Control I go to has retired and the new doctor only deals with injections for pain management. Now, he has stated that he will not leave me "hanging," but he also does not wish to write medication prescriptions for anyone (he will continue to write me a prescription until I find a new doctor).
Unfortunately, both my neurologist and family doctor will not write a prescription for methadone. This is why they sent me to the Center for Pain Control in the first place. My family doctor is trying to locate me a new pain management doctor, but alas, the two I called (he gave me the contact info) only do injections! I live in Blandon, PA. (near Reading, Pottstown, and Allentown) and about an hour from Philadelphia.
Can you recommend an honest doctor who specializes in this kind of pain management? I honestly don't understand why I was put on a medication (which is addictive) if no one wants to prescribe it. It works wonders and I, along with all my doctors, have exhausted all other options (i.e. Mirapex, Requip, Darvocet). I even had a treatment of ECT (Electroconvulsive Therapy) because I was told that it MAY help with the RLS as well as the bipolar. I discontinued it because I thought it was making it worse (much like a lot of the bipolar meds).
The problem is not that only a few doctors will prescribe methadone or other potent opioids for RLS but rather that most doctors are not adequately educated to feel comfortable prescribing those medications for RLS. That is the deficiency that needs to be addressed and fixed. Unfortunately, only a small percentage of RLS doctors, neurologists and other doctors who treat RLS will prescribe potent opioids on a regular basis. These drugs are actually fairly safe when given in a controlled manner and monitored closely.
ECT has no role for RLS (I can't speak about its role for bipolar disease).
Sent: Wednesday, January 06, 2010 12:53 PM
Subject: Query about RLS intensified by taking warfarin
I am a 67 year old woman who has been on warfarin (currently 10 mg daily) because of atrial fibrillation since mitral valve repair last April. Have no sign of atrial fibrillation now but my consultant wants me to continue taking warfarin because of residual valve leakage. The problem is that it causes severe sleep interruption and RLS all night. Am taking the Warfarin early in the day now which helped for a while but now the problem is bad as ever. I do exercise and eat carefully - no caffeine after lunch time. Feels like I will go nuts some nights.
Have you heard of this connection with RLS before? I know you can't really help me but just giving assurance I'm not the only one experiencing this would be a plus!
I can’t say that you are the only RLS patient who is experiencing worsening of symptoms due to warfarin, but I have never heard of that problem before nor is there any reports of this issue in the medical literature.
Sent: Wednesday, January 06, 2010 9:30 PM
Subject: methadone tolerance
I have RLS day and night and I cannot take any of the Parkinson's disease drugs (they don't work plus too many side effects). I was on Ultram for 11 years and it stopped working. I am now on methadone. I take the 5 mg tablets-1 and a half tablets for daytime and 1 and a half tablets at night totaling 15mg daily. It has worked really well for me but I heard from someone in my RLS support group that methadone is effective for about 7 years then it stops working. This person started having tolerance after 2 years.
I am worried about this because my RLS is very severe and I am only 57. What do you do when the only med that helps you doesn't work anymore. Do you have any advice about how you would handle this. Even though I don't have any problem with it yet, I'm assuming I will have at some point and without medication the RLS is unbearable. What can you do if the medication stops working?
Although methadone is a drug that causes tolerance and
dependence, if taken properly these issues can be easily avoided. I cannot
comment on why the person in your support group developed tolerance after 2
years but under proper supervision that should occur very rarely.
I have many patients who have been using methadone for almost 20 years to control their RLS symptoms and have had no change in dose or effectiveness of their medication. The trick is to take the opioid only in sufficient doses to just eliminate the RLS symptoms (there should be occasional breakthrough symptoms to prove that you are just at the effective dose). With proper monitoring and control of the of the opioids, dependence and tolerance should occur rarely. The only patients of mine that developed these problems took more of the opioid than recommended (trying to eliminate any chance of even minimal RLS symptoms from occurring or taking the medication to treat other problems such as arthritis pain).
I don’t know where the 7 year limit of effectiveness for opioids or methadone came from, but as you can see it is not valid from my experience nor is it noted anywhere in medical literature. As long as you are careful, you should be able to do well indefinitely with your methadone.
Sent: Thursday, January 07, 2010 10:10 AM
Subject: Warfarin worsening RLS?
I am taking warfarin and my leg have really been keeping me awake. I have restless legs. Is taking that making them worse? It starts at night and I walk around the house for hours and I am so tired. I have to take that medication because I have a blood clot in my groin and one in my calf.
We did get a recent email letter from an RLS patient who thought her warfarin might be worsening her RLS symptoms but there is really no other reports or evidence for this problem.
Sent: Thursday, January 07, 2010 12:04 PM
Subject: Sleep myoclonus/PLM
I have a type of "jerk" which happens right at the point of sleep -- hundreds of times a night. These jerks come from all different places (face, hand, trunk, feet, legs), and keep me awake to the point of exhaustion. For many years, I controlled them with 0.5 mg Klonopin at bedtime. Recently, I tapered off the Klonopin over 3 months. One week after being completely off this medication, these jerks came back full force.
I started back on the Klonopin 0.5 mg, but this time it isn't helping at all. I have researched this condition for years. Recently, I saw something about a med (over the counter, I think), called Piracetam. It is supposedly helpful for different types of myoclonus. Wondering if any of you have heard of this or tried it?
It is not clear whether you have PLM or some other type of
jerking problem. Typically, Klonopin does not stop the PLM but rather stops the
person from awakening from these leg jerks. You would need a sleep study to
determine if you actually have PLM.
As such, it would difficult to recommend whether Piracetam would help as it has not been yet demonstrated to benefit PLM.
Sent: Friday, January 08, 2010 4:44 PM
Subject: Antipsychotic Medications
For the past 10 months I have been struggling with RLS. I was iron deficient and have had monthly intravenous iron treatments for the past 4 months. My iron is normal now but I still have the RLS and it seems to be worsening. I tried Mirapex but stopped it because I was becoming depressed. My family doctor put me on Percocet last week and I haven't had an RLS symptoms since I started taking the Percocet.
I have bipolar disorder and I am on a lot of drugs. I am taking
Lamictal, Lithium, Seroquel, Zyprexa, Deplin, and Klonopin. Could any of these
medications be contributing to my RLS?
To benefit RLS, you need to get your ferritin level quite high,
typically above 70-100 range. This is well above what is considered the normal
range (for patients without RLS) and it may be helpful to have repeat
intravenous iron therapy done to get your ferritin well beyond that range.
Seroquel and Zyprexa are likely to worsen RLS, but this does vary considerably.
A Reply from Tammy
Sent: Thursday, January 28, 2010 4:37 PM
Subject: RLS Medications and Depression
I have had RLS for the past ten months. I have tried Mirapex, Percocet, Requip, and Sinemet. With the Mirapex, Percocet, and Sinemet I have developed depression. I had hallucinations with the Requip. I have bipolar disorder and wonder if the RLS medications are working against my bipolar meds (Zyprexa, Seroquel, Lamtical). Are there other medications that I can try for the RLS which don't cause depression?
Treating RLS with bipolar disorder can be challenging. Many of
the bipolar drugs (Zyprexa and Seroquel in your case) tend to worsen RLS but
must be taken to control the serious bipolar problems.
Usually Percocet and Sinemet do not cause depression but since they do in you they should not be used. You might try other painkillers like tramadol or even methadone to see if they do not cause depression problems.
Another choice would be adding a drug like Lyrica.
Sent: Saturday, January 09, 2010 5:16 AM
Subject: RLS and bipolar disease?
Hello, I am writing for my wife who is suffering from everything I can gather severe RLS episodes. She is bipolar type 1 according to the last doctor we saw. He has put her on dekapin, clonazepam and lexomil to sleep. Is her bipolar causing the RLS? and will this help both? She seems to think Requip is the only thing that will work.
Clonazepam and Lexomil are both benzodiazepine drugs (in the
same class as Valium). They will help patients sleep but typically are not
prescribed together as they work on the same receptors. They both have very long
half-lives (how long it takes the body to remove half the dose taken), 10-20 for
Lexomil and over 40 for clonazepam so they both stay in your body for a very
long time. These are not RLS drugs but just help anyone fall asleep for any
reason (back pain, anxiety, RLS, etc.).
Requip and Mirapex are currently the drugs of choice for RLS and work better than many other drugs. There are other choices which you can read about on my website.
Sent: Saturday, January 09, 2010 7:16 AM
Subject: RLS worsening?
• Was diagnosed to have RLS in my left leg about 2 ˝ years ago. Very uncomfortable, specially in the evenings and nights
• Was prescribed Mirapex started on low dosage uneasiness still continued----doctor increased dosage to 1 mg every night. Seemed to work very well
• Since about ten or twelve days, it has resurfaced. Earlier it was my left leg, now it appears to be both. Also both arms. Have been out of Mirapex about three days now (because of insurance). Am going to the pharmacy today
• Have tried two sleep studies but left both of them about half way through. They were quite uncomfortable. The doctors report on whatever was done was mild sleep apnea
I take the following medications:
• Mirapex 1 MG PER DAY
• Lexapro 20 MG PER DAY
• Lamictal 300 MG PER DAY
• Avapro 150 MG PER DAY
• Simvastatin 20 MG PER DAY
• Nexium 40 MG PER DAY
• Levoxl 75 MCG PER DAY
• Lithium Carbonate 300 MG PER DAY
• Avelox 400 MG PER DAY
• Centrum Silver 1 PER DAY
• Androgel 5 GRAMS PER DAY
• Also take apple cider vinegar in the mornings by mouth (unrelated to RLS)
• While reading your material, I came across the use of apple cider vinegar physically on the legs. I am going to try this today
• I take a lot of Splenda, and also have a lot of ice-cream----based on information contained, I am going to drastically minimize these
I would appreciate very much if you review this and let me know what changes, if any, would be helpful to beat RLS). I am sure you know that Lexapro, Lamictal, lithium carbonate are for depression and related items
If your RLS is also occurring earlier in the day and is more
intense, it is very likely that you are experiencing augmentation from Mirapex.
This is a worsening of RLS due to taking a dopamine drug like Mirapex or Requip.
It tends to be more common at higher doses of Mirapex (.5 mg and higher) but can
happen at any dose. We typically need to discontinue the Mirapex to stop the
augmentation and replace it with an anticonvulsant (gabapentin, Lyrica) or a
painkiller (opioids or tramadol). After a month or so, you could retry Mirapex
at a lower dose but the chances are high that the augmentation might occur
Lithium and especially Lexapro tend to worsen RLS but if these are really necessary then we just treat the increased RLS and continue the drugs. Some patients can substitute Wellbutrin XL for Lexapro and treat their depression problem without worsening their RLS.
Sent: Tuesday, January 12, 2010 4:35 AM
Subject: RLS and leg jerks?
I have written you before but now I have a new problem. When I get RLS my leg will jerk. Is this something that goes along with RLS? I am taking Mirapex (.5mg 2:00PM and 1mg at 10:00 PM). I also take Neurontin one tablet of 300 mg at 2 PM and 2 tablets at 10 PM . I am bothered a lot during the day with RLS and especially in the evening hours. Also after my hip replacement, I developed neuropathy in that leg. It feels really tight and numb about half way down the lower part of my leg and foot and RLS really bothers me in that leg.
I don't know what I should be doing about RLS. For the most part , I sleep fairly well but am always awake 2 or 3 times a night. That is a good night for me. Hot baths help sometimes. Every day I have to mostly keep on my feet doing something because RLS will not let me rest.
The leg jerks are called PLM and are very common in RLS
patients. There are several solutions to improve your current RLS symptoms. You
could increase your dose of Mirapex and see if that helps. You could also
increase the gabapentin (as long as doing so does not make you too sleepy) and
see if that helps.
If the above suggestions do not help, consider adding a painkiller (opioid or tramadol).
Sent: Thursday, January 14, 2010 1:02 PM
Subject: Advice on My RLS Medicines
I am 59 years old and I have been treated for RLS for the last 10 years (my Mother has also suffered from RLS for many years). I have also had two back surgeries. I exercise regularly, watch my diet, etc. and am generally healthy. My symptoms typically start in the evening and are in both calves. Typical are creepy/crawly/can't keep my legs still. My wife says that I jerk my legs throughout the night and we are forced to sleep in separate rooms. I also suffer from insomnia on a regular basis.
I see a Neurologist that is a sleep specialist. I have cycled through numerous drugs over the years and my current regimen works; however I am very concerned with taking all these drugs for a long period of time. I currently take:
6:00 pm: .5 Requip
8:30 pm: .5 Requip, 300 mg Gabapentin
10:00 pm .5 Requip, 600 mg Gabapentin, 1 mg Clonazepam
Working with my neurologist, I tapered off of Clonazepam without it adversely affecting my RLS. However, my insomnia got much worse and have started taking it again and am sleeping better. I have also tried Tramadol and it was very effective on treating my RLS; however, it makes my insomnia much worse, even at a low dosage. I take Ambien about once a week when I have had several nights of poor sleep. I have not tried any of the opioids.
I am not sure why you are taking .5 mg of Requip at 6 pm then
again at 8:30. Although there is nothing bad about doing that, it would be
simpler to take 1 mg at 6 pm.
It might be better to use Ambien or Lunesta on a regular basis rather than the clonazepam as the clonazepam has a significant potential of tolerance/dependence occurring while the others do not (over the long term).
However, as long as you are doing well with your current regimen otherwise, I would not make any changes.
Sent: Thursday, January 14, 2010 5:27 PM
Subject: RLS and Mirapex?
I have had severe RLS for the last 25 years. After trying Sinemet and various other drugs, I finally settled on a combination of Mirapex and clonazepam. I take very small doses of the Mirapex - .5 - .75 mg and 2 mg of clonazepam. I have been on this drug regimen for at least 15 years now and it works wonderfully. If I try to go off the drugs, my RLS comes back with a vengeance. Very occasionally I will get a small attack of RLS and I counteract that by taking a small .25 mg tablet of Mirapex which seems to take care of it.
Do you have any idea if Mirapex is going to go generic anytime
soon? Also, my husband has been on 300 mg of Neurontin 3 times a day for nerve
damage after surgery. He is free of pain now and going to wean himself off the
drug. Could I try that drug for a while instead of the Mirapex? Cost is a great
Mirapex may be going generic in the next year or so but that it is not certain yet. It may be better to consider the generic for Requip (ropinirole) that works very similarly to Mirapex rather than try Neurontin. Although it is possible that the Neurontin may work well for your RLS, it will likely not cover you for the withdrawal period from Mirapex (which may last a few weeks).
Furthermore, your dose of Mirapex is not a small dose but rather at the upper end of what most patients use for RLS. Your dose of clonazepam is also quite high and is not really an RLS drug (you can read my many other replies on why I dislike the use of that drug for RLS).
Sent: Saturday, January 16, 2010 12:16 AM
Subject: Drug holiday for dopamine agonists?
I can't find the number of days I should stay on Mirapex and be off Requip. What is the normal drug holiday period of time for this drug? Requip was working less and less, but Mirapex gives me nausea and headaches.
There is really no such schedule. Most RLS patients do not need
to alternate these drugs as they act on the same receptors. As such they
typically cause the same problems and have the same benefits. However, some
patients do find that one of these drugs works better than the other and will
stay on the one that works best.
There are very few patients who alternate these medications and as such it is hard to give guidelines for the “drug holiday” period. When a “drug holiday is used for augmentation or tolerance, we usually stop the drug for 2-4 weeks. But that might not apply to your situation. You would have to experiment but 2-7 days may work.
Sent: Sunday, January 17, 2010 8:45 AM
Subject: Mirapex causing sleepiness?
I have restless legs for many yrs. About 5 years ago I had to go on Mirapex 0.5 mg. I have to take it at 3 pm. About 1 hour later I get so tired I cannot go any place. I sleep for a few hours and then when it is time to go to bed I will fall asleep and wake up in 3 hrs. and that ends my sleep. Oh yes, before I go to bed I take another half tablet of Mirapex plus 1 tablet of Darvocet.
Does the medication affect other people that way? I feel bad for
my husband as we cannot go any place where I have to sit without moving around.
Sleepiness is actually one of the more common side effects of
Mirapex and Requip (although thankfully, it still occurs only in a small
minority of patients). It might be worth trying Requip (ropinirole) instead to
see if you can tolerate that drug better but if you get the same side effects,
you should not be on Mirapex or Requip.
Since there are many other treatments including painkillers like Darvocet or anticonvulsants. Most all RLS patients should get relief without suffering significant side effects.
A Reply from Louise
Sent: Monday, January 18, 2010 1:36 PM
Subject: Mirapex causing sleepiness?
I have been on Requip and that did not work at all. You commented on I shouldn't be on either one if I have the same side effects. I have tried not taking Mirapex and there was no rest for me at all day or night.
Stopping Mirapex typically drives RLS into hyper-drive for a week or so. You may need opioids (Vicodin, oxycodone, etc.) to take care of the symptoms for the 1-2 weeks then you can start on a different class of therapy. Your doctor will likely not be familiar with how to do this so one or both of my books may help facilitate this treatment.
Sent: Sunday, January 17, 2010 7:04 PM
Subject: RLS after Surgery
In March 2009 I had a benign tumor removed from my liver, several weeks after surgery, I began to feel strange things in my legs. They just felt weird, at that time I just assumed that was part of the healing process of feeling that way. But it never went away, and several month later I found out that it was RLS, which makes so much sense now. It was pretty severe for about 6 months and I went to a neurologist doctor and was prescribed Mirapex but my legs would start to hurt about thirty minutes to one hour after taking it and it completely went away after going off of the drug.
I also tried Requip, but had the same out come, so I just went off of the drug and didn't take anything for it. So the severity was about the same as it has always been, but then it just started getting better and my RLS hasn't been that bad at all for the last two months. I still have some mild symptoms but nothing compared to what I was having.
Have you ever heard of a surgery triggering RLS? I asked my
doctor and he said that it was just coincidental. Is it common for RLS to get
better? My biggest fear is that it is going to come back as bad as it was.
Although there are no scientific studies to prove it, there are
so many reports of surgery (or other trauma to the body) triggering or worsening
RLS that we believe there must be some connection. However, we have no idea why
surgery should worsen RLS.
It is actually much less common for RLS symptoms to get better with time as it usually worsen slowly over decades. However, many patients do notice significant periods of remission. However, it is very difficult to predict whether your symptoms will worsen in the future. For example, if your iron levels decreased from surgery (from blood loss) resulting in a low ferritin level, that could cause a worsening of RLS. The RLS symptoms might then improve if your iron (ferritin) levels also improved after surgery.
Sent: Monday, January 18, 2010 9:51 AM
Subject: Mirapex and Depression
I have emailed you a few times in the past few months about my RLS and my depression. I started with a new psychiatrist today. He is prescribing Mirapex for depression. He wants me to take 0.125 mg for one week and then increase it by one pill each week for four weeks until I'm taking 0.125 four times a day.
I am concerned that this is too quick an increase in the medication for my RLS.
The dose regimen is not too fast for RLS but the use of Mirapex for depression is somewhat unorthodox. Although I have heard of some psychiatrists using this drug to treat psychiatric syndromes, there is really little to no research or evidence available to demonstrate that this is a valid use for this drug. As this drug may have adverse effects on RLS (such as augmentation), one should be careful using this drug for conditions other than RLS.
Sent: Monday, January 18, 2010 11:03 AM
I have been dealing with RLS, off and on now for about 10 years. What is odd is that right before the RLS started, I also began my condition with chronic kidney stones and hypertension? The kidney stones (calcium oxalate) and hypertension were diagnosed and kept under control by diet and meds. I never even knew RLS was a medical condition until about 1 1/2 years ago.
My doctor only acknowledged that it is a problem but never offered any advice or treatment. She only told me that it was still being studied. Is there any relationship between kidney stones, hypertension and RLS? I only sleep about 4 hours per night every night but my RLS is only active about 2 times per week. I have found that 2.5 mg of Ativan seems to calm the "jitters" on the particularly bad nights.
There is no known relationship between RLS and kidney stones or
RLS is very treatable and you have lots of options to take care of your intermittent RLS symptoms. Good choices would be Sinemet 25/100 or a painkiller (such as Darvon or tramadol) as they work quickly and can thus be very useful taken on an as needed basis. Ativan may calm your “jitters” but typically does not relieve RLS symptoms. However, if you feel that works well enough, you may continue with that treatment.
Sent: Monday, January 18, 2010 2:33 PM
Subject: Pristiq and RLS?
I only have RLS and sleep problems on anti-depressants. I am on Pristiq now. I have been on 15 different antidepressants so I don't have many options for moving to a more friendly med. I tried Wellbutrin but could not tolerate it. I have a script for Requip that I have not started yet.
If I only have RLS due to the antidepressants, am I also at risk for the RLS spreading with the Requip to other areas of my body. I forget what that is called.
You are referring to augmentation which is a worsening of RLS due to taking a dopamine drug like Requip. Being on an RLS unfriendly antidepressant like Pristiq does not increase your chance of getting this augmentation problem.
A Reply from GW
Sent: Wednesday, January 20, 2010 6:36 AM
Subject: Re: Pristiq and RLS?
Thanks you. So, I took .25 of Requip on the first night and it was awesome. I slept the whole night. Legs were calm. The second night of .25, the RLS was worse than my baseline.
Is that expected?
That is quite unusual. I do not have any explanation although we do see phenomenon from time to time. The amount of doses taken can vary but more often, the Requip will cause problems with the first dose and each subsequent dose without ever helping the RLS symptoms.
Sent: Tuesday, January 19, 2010 2:21 PM
Subject: Gabapentin for RLS?
In 2001 I had a mental breakdown due to stress, although I had always had an anxiety problem , but the stress of work and loss of family members etc caused enormous stress which led to the breakdown. My GP tried to help by prescribing various trials of anti-depressant, none of which worked. In fact my RLS symptoms began from that time.
A diagnosis of Bipolar Disorder was finally made by a psychiatrist and I am on valproic acid (Epilim) to control this condition. However I still suffer from RLS every evening and night especially when I am trying to relax or sleep as described by many people on this site. I have been on Sinemet for almost 8 years which became ineffective a couple of years ago. I have tried Repreve (ropinirole) which seemed to work, but the downside is it is too expensive $120 AUD for 28 tablets. In May 2009, my GP put me on a new drug released here called Sifrol (pramipexole) which worked wonderfully for about 2 weeks, then the symptoms came back. I am also a chronic insomniac sufferer and have very little or no sleep at all some nights.
I suggested to my GP that I'd be referred to a Sleep and RLS disorder Specialist. He advised to stop Sifrol in his opinion I suffer from augmentation or rebound as my RLS is not only confined to legs, but arms and upper torso. The specialist advise to take 300mg of Gabapentin twice a day. No sooner do I take this that within 30 minutes, my symptoms worsen. On my second visit I told him that I was desperate and he advised to increase the dosage to 1200 mg. I am still not having any relief I think I am getting worse and depressed as the RLS and PLMD symptoms are ongoing every 20seconds for hours.
By coincidence due to a tear in my supraspinatus (right shoulder tendon) I took some Tramal 200mg also known as (Zydol), I ceased the Gabapentin and went back to take 1 Sifrol, 1 Tramal and 1 clonazepam and miraculously, I had no RLS and managed to sleep 6hrs for the time in months. The specialist however still wants me to cease Sifrol and take gabapentin with Tramal and clonazepam. I am scared to take gabapentin again as I tried it last night only 300 mg and 30 minutes later sure enough the symptoms returned.
What should I do? I am so desperate and life has become mediocre. I am dreading the evening and the night, I feel washed out and because I go to the gym and jog etc. I am feeling that I am breathless and no energy due to the lack of sleep.
You do not say what dose of Sifrol (called Mirapex here in the
USA) you are taking as this may make a difference. However, since it did not
work well before, it might not be helpful taking it now. It is too bad that
Repreve (called Requip here in the USA) is so expensive as it may have been the
right choice for (although it works similarly to Sifrol).
It is very likely that your RLS improvement is due almost completely to Tramal (tramadol) 200 mg which is known to work very well for RLS even at a much lower dose of 50 mg. Clonazepam is not an RLS but a sedating benzodiazepine (similar to many sleeping pills) with a very long half-life of over 40 hours (which means that it is still causing sedation during the daytime). If you need a sleeping pill for your insomnia, there are much better shorter acting ones that do not cause tolerance/dependence as does clonazepam.
Since gabapentin did not work before, I am not sure why your doctor wants you to try it again. He may be thinking that sometimes drugs that do not work by themselves may work in combination with other drugs (which might be possible in your situation but not very likely).
Sent: Thursday, January 21, 2010 7:58 AM
Subject: Restless legs and insomnia?
I take ˝ of a .25 Mirapex in the morning, 1 -.25 at lunch, 1-.25 at supper and a ˝ at bedtime. This seems to stop the restless legs and arms. I can fall asleep usually with no problem but wake in 2 hours. Zopiclone taken when I awaken helps me sleep (.75 or ˝ )Is there a better way to take the Mirapex and or the sleeping aid so I can have a restful sleep?
It seems less likely that the Mirapex is responsible for your
nighttime wakening. The cause of your problem is not clear from the information
you have given me (and may still be unclear with more information).
You might sleep better by taking the zopiclone before bedtime rather than waiting until you wake up.
Sent: Friday, January 22, 2010 7:37 AM
Subject: Zocor worsening RLS?
Have you ever had any reports that cholesterol medications can exacerbate RLS?
There are no reports in the medical literature of statins (cholesterol lowering drugs like Zocor, Lipitor, Crestor, etc.) worsening RLS nor have I ever heard of this issue. I suspect that patients may be mistaking the muscle pain that is often caused by statins as worsening of RLS symptoms.
Sent: Friday, January 22, 2010 9:06 AM
Subject: RLS now in arms with whole body aches
I am 76 years old and have suffered RLS since about 7 years old when I would get up on my hands and knees and rock back and forth. I have had several remissions but lately it is worse than ever I have it in my arms, shoulders and of course legs I have only read about one person who has had this in the arms when this happens I sit on the side of the bed and rock back and forth or sit in my rocker recliner walking doesn’t seem to have any effect on my shoulders/arm.
My doctor has me on Darvocet N 100, 6 pills per day and 1.5 mg of clonazepam. I mentioned Vicodin and he seemed to want to stay with the Darvocet. On Monday of this week I had 8 teeth extracted and was given Vicodin 2 tablets every 4 hours and Percocet at night and have had the best nights of sleep all week. Is there anyone who has had experienced this pain in the arms/shoulders?
With the additional pain my RLS has taken over my life. I have always been a fairly active person but don’t have the strength anymore to do much of anything. I have take both Requip and Mirapex and both made things much worse.
Down and Out in Independence, MO.
Acetaminophen (Tylenol) does not help RLS (so can only cause
side effects without any benefit). That is why I do not use or recommend
combination drugs (Darvocet, Vicodin) for treating RLS. It is better to use
opioids that are not combined (such as Darvon instead of Darvocet). When more
potent opioids are needed, methadone and oxycodone are typically prescribed.
You may also want to consider the addition of gabapentin or Lyrica as that may allow lower doses of opioids to be helpful.
RLS commonly extends to other body parts as it increases in severity. The most common body part affected after the legs are the arms. Any part of the body may eventually be affected by RLS symptoms.
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: Friday, January 22, 2010 5:25 PM
Subject: Mirapex for RLS
I have been diagnosed with severe RLS and have been taking Mirapex for the last 2 to 3 months. My doctor started me on the lowest dose, 1 pill per night to see if it would help. It didn't so he told me to take 2 pills. I have noticed an intolerable itching of my body and know that this is one side effect of Mirapex. Could I have an intolerance to it?
We typically do not use the term intolerance but rather that you are experiencing an unwanted side effect. If it does not get better, you should probably stop the drug. You might want to consider trying Requip which is similar but may have a different side effect profile.
Sent: Sunday, January 24, 2010 1:38 AM
Subject: Sleep and RLS?
When I fall asleep, I tend to sleep very lightly. I used to think I wasn't asleep. I had a sleep study done, and they told me I was in stage 1 and 2 sleep most of the night, and that people can remain aware of their surroundings during stage 1 and even 2. So, when I fall asleep at the beginning I can see dream images adjacent to my thought images (so to speak). Then as the "sleep" deepens, all I see is a dreamscape.
But all this time, I can hear the house, I am aware of my arm
going numb and a muscle somewhere twitching and I am thinking. I am thinking
about the fact that I can notice all these things but am probably in stage 1
because I see dream images. I used to think about people and things in my life
and often would wake myself up doing that. But now I think nothing, I mentally
chant a mantra if I find myself thinking and I drift around that dreamscape and
slip deeper into it. But I'm still hearing and thinking! Finally after an hour
or so, it's like I get bored and I "wake" up; first thinking, of course that I
will wake up now. I get up for a minute, go back to bed and it happens all over
again, for another hour or 1.5 hour.
Do most people hear, feel, and think things in stage 1 and 2, or is it only people with sleep disorders?
I am taking gabapentin (900-1200), codeine (90), and ropinirole (0.25, but it causes augmentation so I take a holiday every 4-6 weeks). I think it is not good enough, because I am not sleeping well, but I often don't have overt symptoms of RLS. It is my opinion that hyper-alertness is a component of my RLS. Before medication, at least half my wakeups were of this nature: I would be in a profoundly deep sleep and I would feel myself being dragged up into wakefulness, and just before I woke up I would think "oh no, I'm waking up" then I would be lying there, wide awake, and totally exhausted. Then, if I kept lying there, the kicking would start. The other half of the time, I was woken up by the creepies which needed kicking.
So one question is, has hyper-alertness been noted as a
component of RLS? I have found only one reference to it, in a news item about a
Johns Hopkins study in which researchers found a higher number of histamine
receptors in the substantia nigra of autopsied RLS brains. The quote that
interested me was this: "The histamine system appears to alter the balance of
the nervous system so that one is not sleepy in the daytime, even with sleep
loss, which might explain why RLS patients can get by on so little sleep."
But the main question is: in your experience, is my poor sleep probably because the RLS is not controlled, or probably insomnia? and what would you recommend doing?
I also want to mention something that's been bothering me for a while, that other people might be interested in. I have found I have to take the gabapentin at the same time every day (no more than 1 hr difference) and I have to keep the dose pretty much the same, otherwise I get wild emotional swings. I have had 3 suicidal depressions in 6 months since being on this drug, associated (I think) with taking it at different times or dose, whereas it had been 15 years since I had had one prior to that. I know there are no studies with conclusive evidence of anything relating gabapentin and mood, and that the way I react to this drug may not be the way everyone is affected, and I may even be incorrectly attributing things to the drug that are actually caused by something else. However, I am certain enough of what's happening to want to get off this drug very badly.
Stage 1 sleep is typically called twilight sleep and is
considered non-restorative sleep. When wakened from stage 1 sleep, most people
will not be sure if they were asleep and will be completely aware of where and
when they are. However, stage 2 sleep is considered relatively deep, restorative
sleep and you should not be aware of what is going on around you. We would need
a sleep study to correlate your sleep perceptions and stages of sleep to figure
out what is going on with you as most people and RLS patients do not experience
similar nighttime awareness.
There is some theories that RLS patients are hyper-vigilant and more alert than other people. However, we really do not have any studies to definitively prove this hypothesis.
Gabapentin (Neurontin) has recently been found to be associated with suicidal thinking.
Sent: Sunday, January 24, 2010 7:36 AM
I have had issues with RLS since I was a child, I never knew how to explain it and I guess never realized it was an actual medical problem until now as I am 37 weeks pregnant and it is almost impossible to sleep or sit and watch TV without sudden movement to relieve my pain.
I have read many of the stories on your site and have a lot of experience figuring out what is causing RLS for me.
First, I just thought I was an insomniac, so I took Tylenol pm, alive pm, Benadryl, melatonin, anything that was supposed to cause drowsiness and it only worked for a few nights... After about 4 nights I would have more severe leg and whole body pain ( for some reason my RLS seems to affect my back, arms, legs, hips, neck, and feet) I found with experimentation that smoking the smallest amount of medical marijuana would cure my symptoms instantly and I would sleep thru the night.
Well now pregnant and having this happen almost constantly and unable to "self medicate" my doctor has prescribed me Percocet and it helps for a few hours and when I wake up 4 hours later It comes back with vengeance!! Like it's mad I suppressed it and it's trying to punish me (yes like it has a mind of it's own). I'm fearing that even though I am pregnant and my doctor thinks it will go away after delivery that I will be plagued with this forever.
I have been anemic all my life and have ADHD could that be related to these problems and now pregnancy is making it worse?? Also I am always afraid to mention my marijuana "self medication" to doctors for fear they will think I am just an addict trying to get meds from them since there is no way to prove my RLS by just telling them I have it. Would it benefit me to tell them or to get a medical marijuana license since I know this works for me without any other side effects?
Pregnancy tends to worsen RLS, especially as you approach
delivery. Most women find marked improvement or complete relief from RLS
symptoms within hours or days of delivery. However, for some, the RLS may
continue to worsen especially when it has been present before pregnancy.
Benadryl and all the OTC sleeping pills that contain medications similar to Benadryl tend to worsen RLS as you have already found out.
You should not smoke marijuana during pregnancy as its effects on the developing fetus are completely unknown (therefore, no need to mention this option to your doctor as it should be off the table right now).
Percocet is one of the few medications that helps and is relatively safe for pregnant RLS patients. Methadone works better but you may find that most doctors are reluctant to prescribe this drug (mostly due to their inexperience with this drug).
Anemia worsen RLS symptoms so taking iron (only under your doctor's supervision) may be quite helpful.
A Reply from Emily
Sent: Sunday, January 24, 2010 10:29 PM
Subject: Re: RLS
I meant to use the marijuana after pregnancy, not during it. Have you ever heard of that being a remedy or that helping someone with RLS because I known it used to help me and it never had negative side effects because I didn't need enough to "intoxicate" me just enough for my muscles to relax?
The other thing I forgot to say was I am also diagnosed with depression anxiety and OCD which the OCD makes me "obsess" over the pain when it comes. The anxiety can cause me to overly panic and have extreme reactions about not being able to control my body and it's movements. Have there ever been any links to these issues?
There have been no studies on marijuana and RLS. However, we
have many patient reports that even small amounts of marijuana (a few puffs or
less) can dramatically relieve RLS symptoms. Although many marijuana smokers
state that they do not have any immediate side effects from the drug, we do not
really know the long term side effects of using it.
There have been no reports or links between RLS and OCD. However, depression and anxiety are very increased in RLS patients whose symptoms are not controlled.
Sent: Sunday, January 24, 2010 10:56 PM
Subject: RLS and opioids
I wrote you about a year ago and received invaluable help in my war on RLS. Here is a brief description of my past and present treatment.
Requip 4 years, worked wonderfully then augmented which I lived with because I could get relief at night to sleep, even though day time symptoms were worse and went into arms. Finally quit working about a year ago, so I stopped it and went to oxycodone. I started taking 7.5 to 10 mgs for symptoms in beginning , then after 3 to 4 weeks reduced the dosage to nights only 2.5 to max of 5 mg. some nights I skipped altogether. Have continued to present day with this treatment. My goal as indicated in letters on the forum was to not eliminate all the symptoms but reduce them to tolerable level to allow me to get to sleep, and the 2.5 to 5 mgs did just that.
The only other drug I am taking now is Wellbutrin for depression due to its apparent RLS friendliness. Lately I’ve started to experience a nervous tension in stomach and it comes and goes with no predictability , sometimes mornings, afternoons, evenings. The feelings are tolerable, but I worry they may get worse and wonder if they are related to my oxy use.
Can I be developing a tolerance to drug, and suffering minor
withdrawals daily? I have purposefully kept the drug usage low in hopes of
avoiding any tolerance or addiction to drug.
I have read you have many patients on the opiates for 20 plus years without having to increase their dosages, so I am thinking this could possibly be related to the Wellbutrin rather than the opiate but wanted your expert opinion on the matter.
My neurologist is very open minded, and has a copy of your book
that I gave him.. His experience with RLS is minimal, but is willing to work
with me if I feel a change in medication is needed. I am quite happy with the
relief I get from the opiate, and have no problem continuing on it, but am
worried it may be augmenting and losing its effectiveness. If you believe the
opiate could be causing this, I could try to stop and go back on Requip.
However, for me, knowing what that has in store for me down the road, I would
prefer not to.
Although anything is possible, it would be very unusual to
develop tolerance/dependence at the levels of oxycodone that you are taking. You
would feel a need for more and not get relief of your RLS symptoms without an
increase in your oxycodone dose which is not what you are describing.
Your problem may be related to Wellbutrin (although even that seems to be a strange side effect to develop after being on the drug for a while as side effects typically occur with early use of the drug not down the road), but it may not be related to anything that you have mentioned so far.
A Reply from Cathy
Sent: Wednesday, January 27, 2010 2:35 AM
Subject: RE: RLS and opioids
I definitely have an intense desire to limit my opiate use for fear of developing a craving or addiction to the drug that would cause me to want or need to increase the dose as time goes by. Its not hard to find horror stories about those addicted to higher doses of the drug, where they develop a constant craving for it . Fortunately at this point, I do not feel any sensation to do that, nor a need to increase it to further relieve my symptoms. I did try and stop it a short time back, to see if I could deal with my RLS without a drug and I found like stopping the Requip, my symptoms increased dramatically.
I know the Requip worked wonders for me in the past, and though reluctant to repeat the augmentation process , it did take several years before I reached the point where I needed to find another drug. If I do find I need to increase the oxy to get equivalent relief, would it be sensible to add back in the Requip, and wean myself off the oxy, to kind of reset my body again, then stay on the Requip till I started to repeat the augmentation process , then switch back to the oxycodone.
It makes sense to me that if I have 2 drugs that have worked well for me in the past, allowing me to handle my RLS, that switching back and forth, every year or so , would make each of the drugs more effective while I was on them. Of course this would assume that my body resets itself when off each of the drugs. Would this be an approach you might take or use with one of your patients? Or am I way off base thinking this would be a sensible approach to handling my RLS over the coming years?
I understand your concerns about opioids. The only reason to
consider going back on Requip until augmentation recurs is to allay your fears
of using oxycodone on a chronic basis rather than real medical concerns (as your
low dose should not really present problems especially with your concerns about
opioids). However, this concern is certainly a valid reason for trying Requip
It is possible that every time your retry Requip that the augmentation problem may recur earlier and perhaps more severely. However, if that does occur, stopping the Requip (and going back on oxycodone) should bring you back to where you were before starting Requip (after a few weeks). If you feel it is worth the trouble and effort of going back and forth on Requip and oxycodone then I see no compelling reason not to do it. I would normally not advise this course (without your concerns) as the oxycodone should work well indefinitely and staying on it is just simpler and quite safe and avoids the stress of developing augmentation again.
Sent: Tuesday, January 26, 2010 3:21 PM
Subject: RLS & PLM still wake up every two hours at night
I am on 3 mg of ropinirole nightly. My doctor had me up the dosage every week by .5 mg but at 3.5 mg I found that I still woke up every two hours and felt as if I could not get a good deep breath at times. I also felt every day and morning as if I never ever slept on minute. I was very tired most of the day. I have since gone back to the 3 mg nightly and will try that again for longer than just a week.
I know I am a light sleeper and when I do fall asleep (which is
never the REM sleep) but NREM sleep is when I supposedly (according to my
husband) I jerk every 20 seconds then of course my brain says to wake up. This
is what happens about every 2 hours during the night. At least since I have been
taking the Ropinirole. I will at least turn over and go back to sleep in about
15 minutes or less. The RLS usually happens almost every night about 6:30 or &
7:00 PM and that just actually drives me nuts till the ropinirole takes affect
which usually is in about a hour. I feel for everyone who has this same
affliction that I have.
Without a sleep study, it is difficult to know why you wake up so frequently (even with your husband’s observations). You may want to try Mirapex instead of ropinirole as there is a possibility that it may work better.
Sleeping pills taken on an intermittent basis may be another potential solution.
A Reply from Cindy H.
Sent: Friday, January 29, 2010 3:46 PM
Subject: RE: RLS & PLM still wake up every two hours at night
I had a sleep study this past December and the baseline polysomnogram (sleep study) shows primary finding of periodic leg movements of sleep. Sleep apnea or snoring was not identified. I believe because I am such a light sleeper according to my sleep doctor (from before) said that when my leg movements are going when I am a sleep, it tells my brain to wake up. I believe this is correct and I am trying 3 mg of Requip instead of the ropinirole.
However, it should would be nice to be able to sleep at least 5 hours instead of waking up every 2 hours. I tried two 50mg of Trazodone for about a week and it did not do a thing.
It is difficult to know if PLM actually do prevent people from
sleeping. It is quite possible that your PLM are causing problems but the
ropinirole should have taken care of them.
Trazodone is not a good sleep drug so your experience is not that unusual.
Sent: Tuesday, January 26, 2010 8:07 PM
Subject: RLS Medication Question
We have emailed previously about my RLS and potential pregnancy. I appreciated your advice and am returning with another question. I sure wish I lived closer to CA as I would certainly seek to become a patient of yours. However, living on the East Coast makes that very difficult!
I am seeing a Neurologist who works within the Geisinger Medical Group in PA. I have RLS 24/7. I have had it for as long as I can remember, however have only required medication for the past 3 years. The neurologist has me on 2mg of Requip and 2400mg of Gabapentin. I also take 100mg of Zoloft for panic disorder and depression. I am still having severe RLS attacks during the day (nighttime is fine) and have torn ligaments in my knees as a result. I have asked for help and she has suggested adding methadone in addition to what I am already taking.
Is this the right choice? Should we consider changing my anti depressant since that most likely is increasing my RLS troubles? Am I taking the right dose of Gabapentin?
In the future (2 years max), I would like to consider getting pregnant. If that is the case, I know that I can only take Methadone. However based on my neurologists suggestion, it would seem that I would not be able to control the RLS with JUST the methadone.
Although Zoloft tends to worsen RLS and may very likely be a
significant cause of your RLS troubles, it may be difficult to stop this drug if
it is important for treating anxiety/depression problems. If you have not tried
Wellbutrin, it may be worth a trial. However, if the problems that required
Zoloft are not adequately addressed by Wellbutrin then you should probably stay
on the Zoloft and just treat around it.
Your gabapentin dose is already quite high and increasing it is more likely to cause side effects rather than benefits. A trial of Lyrica may be worthwhile as this drug may work better for some RLS patients. Increasing your Requip dose is unlikely to help you as you are already on a fairly high dose (near the plateau of this drug’s effect on RLS). There is a chance that Mirapex might work better but only a trial on this drug could determine this issue.
If the above suggestions do not work or are not feasible, then adding an opioid like methadone is very reasonable. Methadone is typically potent enough for RLS that it would be very unusual for it not to take care of your RLS symptoms while pregnant or otherwise. The methadone rarely fails to relieve RLS symptoms when prescribed appropriately.
A Reply from Sarah J.
Sent: Friday, January 29, 2010 12:28 PM
Subject: Re: RLS Med Question
Thank you for your answer. I appreciate your time. My Dr says the Wellbutrin would make my panic and anxiety worse so he will not put me on it.
Are you suggesting the Lyrica in place of the Gabapentin? Or in addition to it?
Although Wellbutrin tends not to work as well as the SSRI drugs
(like Zoloft, Prozac, etc.) and may cause increased anxiety problems in some
patients, the effects of all the antidepressant drugs are very erratic and
unpredictable in any given patient and may still be worth a try, Since I suggest
using this drug so often, I have seen many successful cases (and of course many
unsuccessful ones also).
Gabapentin and Lyrica work somewhat similarly (they are both anticonvulsant drugs) so they are not taken together.
Sent: Wednesday, January 27, 2010 6:39 PM
Subject: re: excitotoxins
I read an article stating that eliminating excitotoxins from your diet would cure RLS. I never heard anything like this before. Was curious as to your thinking on this matter.
It is likely that you read this article about excitotoxins in one of the popular magazines. There are no valid research article about eliminating excitotoxins for treating RLS and likely for any other disorders. This is simply one of those articles that appear in non-medical publications that make interesting (but unhelpful) reading.
Sent: Saturday, January 30, 2010 2:14 PM
I have just returned from a cruise across the Atlantic and experienced severe seasickness. In the past have used Stugeron and it did not worsen my RLS. This time it did quite severely. Is there any medication that I could take for this horrible sickness that may not worsen my RLS. If not good bye cruising.
Sue in the UK
It is more surprising that you did not have trouble in the past with Stugeron (cinnarizine) as this drug is an antihistamine that typically worsens RLS. A good alternative drug that does not bother RLS is the TransDerm Scop patch that should enable you to cruise happily.
Sent: Monday, January 18, 2010 9:51 AM
Subject: Mirapex and Depression
I have emailed you a few times in the past few months about my RLS and my depression.
I started with a new psychiatrist today. He is prescribing Mirapex for depression. He wants me to take 0.125 mg for one week and then increase it by one pill each week for four weeks until I'm taking 0.125 four times a day.
I am concerned that this is too quick an increase in the medication for my RLS.
The dose regimen is not too fast for RLS but the use of Mirapex for depression is somewhat unorthodox. Although I have heard of some psychiatrists using this drug to treat psychiatric syndromes, there is really little to no research or evidence available to demonstrate that this is a valid use for this drug. As this drug may have adverse effects on RLS (such as augmentation), one should be careful using this drug for conditions other than RLS.
A Reply from Dale K.
Sent: Monday, February 01, 2010 2:29 AM
Subject: RLS and Ativan?
I have been taken Ativan for at least 10 years (long before the onset of RLS). About 10 days ago, I just could not get to sleep, so kept going back and taking more Ativan. I think I eventually took about 15-20 mg. I slept for over 24 hours and when I woke up, became frightened so called 911. I ended up in the hospital for 5 days. During that time I didn't take any medications and had absolutely no RLS symptoms.
Once home, I was prescribed a very small dose of Lamictal and .5 Ativan. In those 5 days, my RLS has become very bad. I now have pain in the legs during the night which wake me up. The RLS symptoms in the evening have become much worse as well. I was wondering why I had no symptoms while in the hospital and why they are so bad now that I'm home. Could it be a kick back from the Ativan?
I looked at one of your prior emails where you said it should be easy to find a qualified RLS doctor in NYC. Nothing could be further from the truth. I have been trying for two years and am still trying to find a doctor to treat my RLS. They all want to give me Requip or Miramax....period.
I am still looking, though. I was told that a sleep clinic might be a "full service" treatment center for RLS.
I really do not have any good explanation for your recent
changes in RLS symptoms. It may be that the very high dose of Ativan simply
stuck around for the 5 days in hospital and kept your RLS symptoms calm. When
the overdose of Ativan wore off, then possibly this heralded the increase in
your symptoms. Lamictal may even help RLS symptoms in some patients so it is
less likely that it may be worsening your RLS.
There should be some good RLS doctors in NY but you may have to check the university hospital doctors as most community doctors are likely not that well trained yet in this disorder. Full service sleep labs typically treat sleep apnea and disorders like narcolepsy but rarely treat RLS as you don’t really need a sleep study to diagnose RLS.
Sent: Tuesday, February 02, 2010 1:22 PM
Subject: Mirapex & Compulsive Eating
I have been taking 0.75mg of Mirapex for the past nine (9) years and it works wonderfully; however, during this time, I began eating compulsively right before going to bed (and sometimes during the day) and have gained 70 lbs. I always thought I had "night eating syndrome" but maybe the compulsivity is caused by the Mirapex. I was told I am taking a low dose of the medicine, so I never considered Mirapex as a cause. I do not exhibit the other compulsive behaviors associated with Mirapex. I am also a Sleep Apnea patient with a 13 setting.
Although it was initially thought that the compulsive disorder
problem due to Mirapex occurred at the much higher doses used for Parkinson’s
disease but over the past 4-5 years it has become quite clear that many
compulsive cases are occurring with the lower doses used for RLS. Your dose is
actually on the very high end of RLS patients so it is quite possible that the
Mirapex is causing your compulsive eating problem. Typically the compulsions
that occur from dopamine agonists are very specific (gambling, shopping, sexual,
eating) rather than being very specific.
The best way to tell if Mirapex is causing your problem would be to switch to another class of RLS drugs such as opioids or anticonvulsants.
Sent: Wednesday, February 03, 2010 11:36 AM
Not sure if it's just me or an interaction with other medications, but my RLS has gone nuts for these first two days taking Deplin. It's the worst I've had in years. I went looking for information on the possible interaction and found www.rlshelp.org.
I thought you might be interested, since I don't see it discussed anywhere.
As Deplin is a folic acid type of drug, there is no reason that I know of that should cause and interaction between that drug and RLS (nor have I ever heard of any problem with this drug or folic acid and RLS). This may be a unique problem occurring only in you.
Sent: Monday, February 08, 2010 5:58 AM
I finally got the Lyrica (50 mg capsules) and am ready to try it. You suggested Lyrica, since my blood pressure plunges when exceeding 1mg of Requip. The prescription is for "1 capsule once daily in the evening". Before I begin, could you please answer a couple of questions?
I know that most drugs list a lot of possible side effects, most of them rare. However, one warning that came with my prescription says "This medication may cause dependence, especially if it has been used regularly for an extended period of time..." and "withdrawal reactions may occur." My doctor told me not to worry about withdrawal reactions to Klonopin, and I had a terrible reaction. So this concerns me greatly. Is there really anything to worry about with Lyrica?
Also it warns "Do not stop taking this drug suddenly". Since this is just a 10 day trial to see if it works for me, I had indeed intended to stop taking it if it does not work and return to the 1mg of Requip. Is there a problem with doing this?
Thank you very much for your help.
Klonopin is a drug that is known to cause dependence/tolerance
so stopping it slowly (tapering off) is highly recommended.
However, the same is not really true for Lyrica, especially with a short trial such as 10 days. I have never seen any problems even with prolonged use of Lyrica.
A Reply from Ed M.
Sent: Friday, February 12, 2010 7:47 AM
I took my first Lyrica last night an hour before bedtime.
After several hours it did not have any effect on the RLS symptoms. So I finally took my 1mg Requip in the early morning hours.
Is there any benefit in continuing the Lyrica?
You many need to try the Lyrica for a few more days to see if it
has any effect. If not, it may help to increase the dose (after one week on 75
mg) to 150 mg. If that dose does not help after a week, you might even want to
try 300 mg (assuming that you are not experiencing any side effects). If you are
on 50 mg tablets, you can increase the dose by one tablet every week.
Please check with your own doctor before attempting any of these recommendations.
Sent: Tuesday, February 09, 2010 4:52 AM
Subject: Methadone & Fluid Retention with heart failure -- an alternative?
My mother has been using a combination therapy of Mirapex and methadone to treat her severe, painful restless legs. Unfortunately the Mirapex is inclined to augment, so she has had to rely more heavily on the methadone. However, she is experiencing fluid retention with the methadone, and as she has congestive heart failure, this is a major side effect.
Methadone works very well for her otherwise and I am hoping you could recommend a more suitable opioid or something similar that doesn’t have the fluid retention side effect?
A Reply from Debbie
I have not seen many problems with fluid retention and methadone. Are you sure that it is not the congestive heart failure or more simply just varicose veins that is causing the problem? If a trial off methadone improves the fluid retention, then changing to another opioid like oxycodone might be worth trying.
Sent: Tuesday, February 09, 2010 5:18 PM
Subject: RE: Methadone & Fluid Retention with heart failure -- an alternative?
The fluid retention definitely seems to be worse while she is taking methadone. She has had several breaks (going back to Mirapex) and it does appear that the diuretics don’t perform as well when she is on the methadone part of the combination therapy. With the Mirapex augmenting she is having to spend longer on the methadone, and that’s the concern.
Opioids do all appear to have fluid retention as a less common side effect, but she unfortunately seems to be one of that group. I believe she has had problems getting oxycodone prescribed in South Africa. Might I ask your thoughts on using fentanyl patches?
I don’t like the use of the fentanyl patches as they are good
for people with pain around the clock (like a cancer patient) but can’t be
adjusted for varying levels of RLS during the day. There are many RLS patients
who have symptoms around the clock but they often need less medication during
the daytime when they can be more active (by doing housework, walking, etc.).
Therefore, the fentanyl patch does not really allow for this daily adjustment of
Having said that, I do have a few patients (only a very few) who do use the patch. Often, they have other problems (such as nerve route pain from a compressed disc) that may benefit from 24/7 pain medication.
Sent: Friday, February 12, 2010 3:32 PM
Subject: Methadone dose?
Can you tell me what the "average" methadone dose is? I have severe RLS, but don't want to over or under treat it. I'm sure it varies from person to person, so what I'm looking for is a range that folks have found helpful with RLS.
Average is a hard number to come up with as the dose varies considerably depending upon the severity and duration (time of day they start) of symptoms. The dose range is 5 mg to 30 mg per day so “average” might be around 15 mg per day.
Sent: Sunday, February 14, 2010 6:33 AM
Subject: Fatigue/Sleepiness with Mirapex?
I have been taking Mirapexin (0.08 mg) for the last two months for RLS and having a great nights sleep now, but I am finding it hard to get myself moving in the mornings. Although I have never been a great morning person I now find that I'm having trouble with activities such as playing tennis (which I would normally have done before) with a ladies group at 10.30 am twice a week.
My reactions seem to have slowed down and don't pick up till
about lunch time. Is this to do with Mirapexin or is it my imagination?
It is possible that even your very low dose of pramipexole
(called Mirapex in the USA) of .08 mg (which is the same as our starting dose of
.125 mg) might cause drowsiness/fatigue the next day. Typically, larger doses or
when patients take the medication during the daytime are more likely to cause
this problem but you may be sensitive to the drug. You might consider changing
to ropinirole, which is similar but has a shorter duration of action.
Otherwise, changing to an painkiller (tramadol or an opioid) might work better for you.
Sent: Sunday, February 14, 2010 10:00 AM
Subject: RLS and Alcoholism
I have had RLS for over 10 years and have been treated successfully for the last 6. I have also been in active recovery for alcoholism for the past 4 years. Do you know of any correlation between RLS and alcoholism? I have read that some RLS patients have developed addictive gambling and shopping behaviors while taking certain dopamine receptor agonists.
What is the correlation linking these two diseases?
There is no known correlation between alcoholism and RLS.
However, many RLS patients have tried to use alcohol to help them get to sleep
when their RLS symptoms are causing insomnia. This can backfire as alcohol
typically worsens RLS symptoms.
The compulsive behaviors are only associated with the use of dopamine drugs but occurs with RLS and Parkinson’s disease patients.
Sent: Monday, February 15, 2010 5:01 AM
Subject: PLMD causing daytime symptoms?
I have been diagnosed with PLMD a study. I jerk my legs in my sleep 18 times an hour. It was around 60 brain arousal's in the 8 hours I slept. I have tried Mirapex, Requip and Neurontin but without success.
My symptoms are waking up un-refreshed, daytime sleepiness, headaches, weight gain, mood swings and fuzzy in the head. I am currently on Cymbalta 60 mg, Xanax 0.5 twice a day, Advair 500/50, Singulair 10mg, ferrous gluconate 2x a day, 1,000 mg Vitamin D and B.
What would you recommend I try?
It is certain that the PLMD is causing your daytime symptoms.
This is a very controversial issue as there is not much research to support the
ill effects of PLMD and in fact there is some evidence that it may not effect
daytime symptoms. That may be why medications like Mirapex and Requip (which
typically markedly reduce or eliminate PLM) may not have helped your.
Furthermore, it is very likely that the Cymbalta is causing the PLM and changing this to a drug like Wellbutrin may eliminate your PLM (assuming the Wellbutrin takes care of your mood disorder problems).
Sent: Monday, February 15, 2010 8:54 PM
I have severe restless legs that is controlled very well by 5 mg to 10 mg of methadone. Over the years I have had more antidepressants and other medications prescribed than I care to remember. Most caused worsening symptoms, others just didn't work but caused other side effects. Neurontin worked for me for 5 years. I stopped taking it and didn't have many problems for a period of time. When I started taking it again it seemed to cause augmentation. Bummer.
That's when the methadone came in. God sent! Anyway, I was also prescribed Wellbutrin 6 months ago and while it didn't help or hurt the RLS it had a mild but profound effect on anxiety I didn't even realize how much I was having. Just thought it was a symptom of RLS during the day. I have more energy and feel more relaxed with less tension and more concentration. Less urgency also. Not a miracle but very noticeable.
Why has the Wellbutrin had this effect when I read that if anything anxiety is usually a side effect? Just wondering if it has this effect perhaps there is another class of medications that might even be more effective for me. Anyway, thanks far all the help.
The Methadone has been a miracle. I would say to other people
considering it to not be afraid. I feel nothing when I take it and I don't feel
the RLS either. I have never felt the need to increase the dose and I'm pretty
sure I never will.
Most RLS patients find that they can stay on stable doses of
methadone for years (or most usually, indefinitely) without any problems
(similar to your experience).
Although Wellbutrin does have a reputation for not working as well on anxiety as the more commonly used antidepressants (SSRI’s and SNRI’s), it often does a good job for both anxiety and depression. All the antidepressants are hit or miss so Wellbutrin is only somewhat more hit or miss. If it works for you then it is clearly as good as any other antidepressant and has the added benefit of not worsening RLS (which cannot be said for most of the antidepressants).
Sent: Wednesday, February 17, 2010 4:12 PM
Subject: Re: RLS Meds
My mother suffers from extreme RLS. You were able to help us November 2008, when my mother cracked her kneecap and had to have surgery. As a result her RLS was aggravated with everything the doctors gave her and my mother was out of her mind, literally. We needed guidance as to what to do, since the medical professionals didn't know how to handle RLS.
My mother Ignacia is 84 years old, on dialysis, has been taking Requip since Nov.'08 and it helps tremendously. But she needs to have a couple of medical procedures
done, regarding her shunt and fistula, which of course requires her to fast, and take medications by mouth within a certain time. The Requip doesn't seem to last long enough. Is there a medication like Requip in liquid form that can be added to her I.V. closer to procedure time?
Her current dosage is .5 mg, 2 tabs after breakfast, 4 tabs in the evening before bedtime, (2 x 2tabs 1-2 hrs apart), on days of dialysis, 1 tab when dialysis starts and a second only if needed.
Margaret and Christina E.
There are a few solutions to your mother’s problem.
Although they really do not want patients to take anything by mouth for 6-12 hours before surgery (depending upon the type of surgery), most doctors will allow patients to take a few pills with minimal or no water a few hours before surgery. If that does not work for her, there are other solutions.
There are no IV forms of Mirapex or Requip. However, there is a dopamine agonist drug called apomorphine (no relation to morphine or other opioid drugs) that can be given IV and should help control RLS symptoms. It is somewhat of a new drug so most doctors may not be very familiar with it. The Neupro patch would have been ideal as it gives a steady dose of dopamine agonist (rotigotine) through the skin. However, it has been withdrawn due to problems with crystallization but will be back in the very near future (this may be a good choice for future surgeries).
However, the easiest solution may be to have her doctor give her an intramuscular or IV dose of a opioid painkiller like Demerol which should take care of any RLS symptoms for a few hours.
Sent: Friday, February 19, 2010 8:11 AM
Subject: Maximum Mirapex dosage
I have found Mirapex remarkably helpful for restless leg syndrome over the past six years. I also appear to have an augmentation issue. Over those six years I have gradually found the need to go from .5 mg to 2.75 mg. I haven't noticed any side effects. But I'm wondering about a possible ceiling.
There is no official ceiling for dosing Mirapex. However, the
maximum dose that is approved for use by the FDA is .75 mg. They found that
doses higher than .5 mg were not better than higher doses but that applies to
groups rather than individual patients. I typically do not go any higher than
1.5 mg for any single dose and rarely even go that high. Most people reach a
plateau at about 1 mg and higher doses tend not to be helpful but do cause
Your need for such a high dose likely is due to augmentation occurring. With time, you will likely need higher doses until the drug no longer is effective or significant side effects occur. I would suggest you add other RLS medication so that you can reduce your Mirapex dose before trouble occurs.
Sent: Tuesday, February 23, 2010 6:24 AM
Subject: Please help me with my severe RLS & PLMD
I just found out why I hardly had any milk when my 1st baby was born, and I am just APPALLED that out of 5 doctors & 3 midwives, no one thought of this as why I was unable to breastfeed more than 2 oz per day, while my friends were able to feed their babies 2 GALLONS! It's the Mirapex. I am wondering if I can get off the Mirapex, at least temporarily, until I get 6 months or more of good milk into this next baby. I
can't just stop taking it, though, as I get severe PLMD WHILE AWAKE (I don't even fall asleep when I try to reduce my Mirapex, so my PLMD is waking PLMD) if I even reduce the pill by a little. I've also tried homeopathic remedies. But basically, I found out a few days ago that Mirapex inhibits lactation by reducing prolactin. And a similar drug is actually PRESCRIBED for mothers weaning their toddlers!!!!! I am so ANGRY that no one said anything when I asked about my issues nursing nursing, and they KNEW I was on this Mirapex.
I saw a lactation consultant, and all those doctors &
specialists, as well as 3 midwives. In fact (and here's the clincher), my
current midwife, suggested Reglan for lactation if I had trouble this next time.
That sounds OK, until you look at how Reglan works: By negating the effects of
Mirapex! It does the opposite dopamingeric job that the Mirapex does, so both
would end up being increased, as they each cancel the other out, until somebody
realizes that this isn't good for the baby to be drinking. And I ALWAYS list the
Mirapex on every medical questionnaire. So a lot of doctors haven't been looking
at the charts.
I am currently on 1.5 mg of Mirapex. And I am entering my 3rd trimester with my 2nd baby. I REALLY want to breastfeed this baby, so I MUST change medications. What can I do? I already take calcium, magnesium, and iron.
THANK YOU for helping me. I am DEVASTATED to finally learn that THIS is why I was a big failure at nursing and no one told me all this time. HELP!
As you can see from our website (RLS/PLMD Treatment Page) the
problem with dopamine agonists like Mirapex causing decreased lactation problems
is clearly noted. It is hard to understand how doctors familiar with pregnancy
would not be aware of this fact. There are unfortunately few alternatives as
most drugs pass through the mother’s milk into the breastfeeding child.
Typically, I recommend a few of the opioids (Darvon, low dose methadone) for
pregnant RLS sufferers but these drugs are not as effective for PLMD. Therefore,
you have few options for your upcoming child.
There is another concern which you do not seem to be aware of that could cause trouble. Mirapex is a category C drug (also listed on our website) and as such is not recommended for use in pregnant women. Although the risk that fetal problems will occur is still relatively low, we do not like to expose the fetus to any extra risk unless absolutely necessary. The same drugs noted above for breastfeeding are also recommended for RLS/PLMD for pregnant RLS patients.
Sent: Thursday, February 25, 2010 9:39 PM
Subject: RLS severe
I have severe RLS after having a car accident. After 2 years suffering I took Sifrol (Mirapex). Worked very well, but I had to increase the dose steadily. At 3-5 x 1 tablet I get severe pain in hips and knees. It seem to be arthralgia? I changed to ropinirole. In the beginning it worked well, but after some weeks a had the same side effects. Now I don't know what to do. I have to stop with ropinirole, but that is impossible.
If I go from 4 back to 3, I have RLS all day long. What are the
You are most likely experiencing augmentation with both of the dopamine agonists and therefore you should not use these drugs for RLS. The alternatives include the anticonvulsants (gabapentin, Lyrica) or painkillers (tramadol or opioids). All these drugs work well for most RLS patients.
A Reply from Bart
Sent: Saturday, February 27, 2010 8:09 AM
Subject: RE: RLS severe
1. You mentioned alternatives, but what should I take first? Gabapentin or Lyrica, does one have an advantage over the other? And what dosage? Or do I start with painkillers?
2. If I go for the alternatives, then how do I stop with
ropinirole. I cannot stop suddenly with all 4 tablets I take now, because then I
go crazy all night and day. Can I go down gradually with ropinirole and then go
up gradually in the same time with one of the alternatives?
Our Treatment Page goes over all the drugs and their pros and
cons (as do many of the letters). You should discuss these drugs with your
doctor to decide but often, only trial and error will tell you which is best.
I typically have my patients stop the Ropinirole abruptly but then potent opioids (oxycodone, methadone) are needed for about 1-2 weeks. This issue is also discussed at great length on our website and in our letters.
Sent: Saturday, February 27, 2010 2:34 PM
I am taking Mirapex .50mg and I understand that Mirapex acts like an Anticholinergic drug. I now have gastroparesis and one of the listed risk factors is use of an Anticholinergic medication. My question is, since Mirapex acts like a Anticholinergic, could it have caused the gastroparesis and if I discontinue the Mirapex might it reverse the gastroparesis?
Mirapex is a dopamine agonist with no anticholinergic effects. You may have read that how it compares with anticholinergic drugs used for Parkinson's disease but there should be no other references to any anticholinergic properties of Mirapex.
Sent: Sunday, February 28, 2010 6:40 PM
Subject: What to try next?
I am 62 years old and I have been taking the maximum dose of Requip for almost a year now, and it seems to be less and less effective. Requip is the only drug I take for RLS and have not tried any other medications for RLS. I have RLS every night and occasionally during the day. Some nights it takes an hour or two of walking around the house before I can get into bed without having severe RLS symptoms reappear the second I lay down.
There are so many treatments listed for RLS that I’m not sure
which direction is best. From what you have told others, it sounds like Mirapex
and Requip are quite similar so Mirapex may not be any better for my RLS than
Requip. I have been given Ambien and had hallucinations and a car accident.
Lunesta left me groggy upon waking and I’m not sure it helped my RLS other than
making me sleep in spite of the RLS.
For depression, I have been taking max dose of Prozac since 1990 and now also take low dose of Effexor (have been taking this for about 3 years) along with minimal dose of norpramine at bedtime which I have been taking for about 15 years. My depression is under control with only about 1-2 depressive/irritable episodes per month. I also take Calan (240 mg) which keeps my blood pressure well in control, and gemfibrozil for cholesterol because I cannot tolerate statins. Other things I take include Prilosec, Melatonin, Mucinex. Daily vitamins include B6, B12, Folic acid, calcium with D, and fish oil.
Also, have you heard of acupuncture treatments helping reduce the severity of RLS?
I have an appointment with my internist the first week of April and would like to have your thoughts before the appointment.
Acupuncture has not been shown to help RLS.
It sounds like you have developed augmentation from Requip. This is a worsening of your RLS symptoms due to taking a dopamine drug like Requip or Mirapex (therefore, you are likely to be right that Mirapex may not be a better choice). The treatment for this problem is to stop the Requip completely which will require about 2 weeks of potent opioids (oxycodone, methadone, etc.) before you get back to where you were before starting the Requip.
At that point, you can continue with painkillers (tramadol or less potent opioids) or anticonvulsants (gabapentin, Lyrica, etc.).
It is quite likely that your RLS is being made worse by both the Prozac and Effexor. However, there are few RLS friendly antidepressants (such as Wellbutrin) and if your depression problems need these medications then you should obviously continue them.
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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