Patient letters on RLS symptoms and remedies- Page 44

 

Kicking RLS/PLMD Patient

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

 

E-MAIL

 
Sent: Saturday, October 26, 2002 1:29 PM
Subject: New Treatment?

First off...THANK YOU, THANK YOU for this site. I am a 52 year old woman who has had RLS since my teens. For the past 5 or 6 years I have been taking Sinemet CR.  I am currently taking the 50/200 dosage every 4 hours, including during the night. I can't remember the last time I slept more than 4 or 5 hours at a time. The RLS effects both my legs and arms.

I have read the letters where you stated that the Sinemet is no longer used for our problem.  I will speak to my doctor about the Mirapex.  However, my neighbor is an OR Nurse (RN) and she called me the other night after assisting a neurosurgeon with the implanting of an Spinal Cord stimulator for an RLS patient. Have you ever heard of this new treatment? This procedure is suppose to eliminate the use of any drugs. If this is available and is in fact used, this is the route I am thinking of going.

I don't know if this has affected others who have taken Sinemet or not, but it effects my very short term memory, i.e., I lose my ability to remember things I have just done. The memory loss is only for about a 48-72 hour prior time frame and eventually I will remember. For instance, if I put something "away" and am asked 8 hours to 2 days later, I can't remember what I did. But after about 4 days then I will remember. I never had this problem before taking the meds. I am tired of living like this. I need to write down meds I take so I don't overdose on them and keep notes for myself.

Thank you for your time and any information you have will be greatly appreciated.

Karlene H. in the High Desert of California

Medical Reply

I have never heard of using a spinal stimulating device for RLS so I can only assume that this is very, very experimental therapy (and should probably only be done in a university setting under an approved research protocol).  There is no previous studies that I am aware of that have ever indicated that spinal stimulation has ever shown any benefit for RLS (and I just did a Medline search to double check).
 
Your memory problem is more likely due to poor sleep which can cause you able to concentrate and memorize to markedly decrease.  With proper treatment of your RLS, these may go back to normal.

Sent: Saturday, October 26, 2002 2:19 PM
Subject: RLS symptoms or something different?

I have uncontrolled limb movement symptoms that don't all seem to fall under RLS, from what I know.  But my doctor thinks it's RLS.  Could you offer some advice?

I have two general symptoms, which come and go depending on the day:

1) Daytime "twitching" -- when minor, I feel my hip flexor twitch periodically.  When bad, I'll notice my thumb, my pectoral muscles, ankle, etc... generally any extremity will just twitch.  I do not have any cramps or otherwise "creepy" feelings, other than that twitching is disconcerting and is itself "creepy".

2) Nighttime kicking -- I'll kick myself awake, usually via more drastic hip flexor movement, and usually during phase 1 sleep.  There was a night last week where I remember being awakened at regular intervals at 2, 4, and 6 o'clock. The symptoms seem somewhat disjoint; I actually rarely, if ever, feel the extreme kicking while I'm awake.  There are nights where I will have absolutely no daytime symptoms, even while lying in bed waiting for sleep. However once Phase 1 sets in, I can kick. 

I can then wake up, sit there, do whatever, and not feel a kick, but then I drift off to sleep again and I kick... I've tried both Requip and Mirapex and they both help the daytime symptoms (Requip better).  But while 0.5 mg Requip can calm daytime symptoms, I'll be on 2mg and still kick awake at night as though I hadn't taken anything.

Finally, I've had this going for about 3 years now.  The first 1.5 years I only had the nighttime symptoms, then more recently the daytime symptoms, which are getting worse. Does this sound like RLS to you or are there other possible causes?  Not to bias you with thoughts but I know the colon polyps and the like run in the family, etc...

Thanks in advance,
Mark W.

Medical Reply

You do not have RLS which consists of creepy-crawly feelings in your legs while awake combined with an almost irresistible urge to move your legs. You may likely have PLMD (Periodic Limb Movement Disorder) which are the leg jerking problem that you are describing. Mirapex or Requip usually work well for the daytime and nighttime PLMD problems.  In your case, the addition of another drug (sleeping pill, Neurontin, pain killer) may work better than increasing the Requip any more.
mjb

Sent: Saturday, October 26, 2002 5:05 PM
Subject: RLS, also known to some doctors as a fairy tale.....
 
I went back to see my doctor and gave him the medication information you had suggested.( try Mirapex or Requip) in spite of this, he wrote a prescription for Sinemet. He said this was working for his one and only patient with this problem (he called it nocturnal something). 

I did not have the prescription filled ,so it turned out to be a 150 mile waste of time!) I'm so tired of being treated like either I'm a hypochondriac or a Looney to be humored. I wanted to slap him across the face. Not a smart choice, but I think I could have derived some satisfaction (before the gents in white jackets came to haul me away.)

I found a doctor in my state through this site who handles sleep disorders. I will be calling her Monday (hoping RLS is one of the disorders she deals in).  I'll know when I call.

Thank you for taking time to read this.  I feel there IS a light at the end of the tunnel now. God Bless you,

Shirlee in Michigan.

Medical Reply

Good luck with the sleep specialist who should be more helpful. Many doctors with little experience with RLS are afraid to prescribe Mirapex or Requip as they are not familiar enough with these medications and do not have the time or ability to feel comfortable to prescribe them.
 
It is not unusual for patients to teach their doctors how to properly treat RLS.  Let us know now you do.
Sent: Monday, October 28, 2002 6:35 PM
Subject: A new idea to treat RLS.
 
I put TRACTION on my legs. Using A bungee cord (s)  is one way of  doing this. Also I tape my calves with clear packing tape. TRACTION is the main thing, it really works for me.

George.

Medical Reply

We have had some RLS patients report that traction seems to help (as does other forms of stretching the limbs).  This seems to benefit RLS sufferers with milder RLS symptoms.  The more severe patients may get some mild benefit from this type of therapy, but generally need medications to help them.

Sent: Wednesday, October 30, 2002 9:11 AM
Subject: anesthesia role? 

I had a knee replacement in mid-August. Since being home (and off the pain meds) the RLS has exacerbated UNBELIEVABLY, until sometimes I think I am going to go crazy. Has the anesthesia played a role in this, or is it my imagination? Secondly, if it is to blame, will the RLS eventually settle down and behave? I'd appreciate your thoughts on this. 

Thanks,
Maryam J., Tucson

Medical Reply

Trauma, such as surgery, commonly will trigger or exacerbate RLS. This is the more likely cause of your recent RLS worsening rather than the use of anesthesia. Unfortunately, once worsened, the RLS usually stays that way.  

Sent: Wednesday, October 30, 2002 10:17 AM
Subject: RLS/Celexa

 I've had sporadic periods of RLS at bedtime for years that would come
and go with no apparent trigger that I could identify. I began taking
anti-depressants 3 years ago ( first Paxil and then Celexa for the past 2
years) .  

The episodes of RLS disappeared coincident with  the beginning of treatment but they have begun to recur in the last 4 months. In addition and more troubling; chronic diarrhea, teeth grinding during sleep , and gum bleeding profusely when I brush,  my gums and tongue have become quite tender.  

The combination of  symptoms seem an awfully random collection of " very rare" side effects associated with Celexa. My doctors don't seem to agree on the relatedness. I've read  some articles (mostly promotional) about the benefit of taking Immunocal while  weaning off anti-depressants. 

Does this have any clinical benefit and are these symptoms likely  a side effect of Celexa?

Thanks in advance,
Dan

Medical Reply

It is very difficult to answer your questions about the side effects of Celexa.  Anything is possible. We can often decide the issue by stopping then restarting the drug and watching to see if the side effects go away then return.  

I do not know anything about using Immunocal, but normally there is no concern about weaning off of antidepressants except that within a few weeks the depression may likely return.

Sent: Wednesday, October 30, 2002 2:11 PM
Subject: Requip to Permax

I've been on Requip for a year. It didn't work for me until I reached a dosage of 2 mg, 3 times daily. It started to lose its effectiveness 3 or 4 months ago. My current dosage is 1.5 mg at noon, 2 mg at 5 pm, 2 mg at 10 pm and 1.5 when I wake in the middle of the night, around 2:30. 

I'm switching back to Permax, which was effective for me for a couple years. I don't know how much dosage will be needed with Permax. As I taper off of Requip over a 25 day period, I'm starting the Permax at .05 mg, 3 times daily for the first 5 days; then up it to .10 mg, 3 times daily for the next 5 days. Is this going to be too rapid with the Permax? Or will I just have to give it a try and see how I react? I didn't have much in the way of nausea or other problems with Permax before, but I wonder how the two meds will mix when I start this transition. 

Thanks,
Don O.

Medical Reply

It is difficult to predict how everyone will react to changing from one drug to another. I have several patients who get tolerance to one dopamine agonist then rotate with another. I even have one patient who changes from Permax to Requip and then to Mirapex every few months.

Most patient just stop one medication then go to the equivalent dose of the other. There is no reason however, not to do as you are doing by tapering off one drug while ramping up the other. In general, Permax .05 mg = Requip .25 mg = Mirapex .125 mg. In some patients the lowest doses noted above of Mirapex and Requip = 2 of the Permax .05 mg tablets.
Sent: Thursday, October 31, 2002 7:27 AM
Subject: RLS
I diagnosed myself with RLS after talking to my cousin who has it and found out her dad (my uncle) also had it. I have been suffering with this for a long time and just thought I had a weird body. Never knew there was a name for it. My cousin told me the real name and I did a search on the internet and found this website.
 
I believe I have a relatively mild case because I don't have symptoms every night. I can't define what triggers it, but know if I eat too many carbohydrates it is worse at night.
 
I called my doctor and he treats RLS with Klonopin at 0.5 mg. I don't know anything about this drug. Can you help before I start it? I think I just need something like Ambien rather than a Parkinson drug.
 
Please advise. The side affects are very scary. I filled the RX and wouldn't take it until I got more info.
 
Thanks.
Linda

Medical Reply

 

Many doctors use Klonopin to treat RLS.  I however do not like using that drug as it has a very long half-life (which results in daytime sleepiness) and often leads to addiction and tolerance.  Ambien is a much better choice but is more expensive.
 
Parkinson disease drugs are very good for RLS but need only be prescribed for more severe RLS which occurs daily.
Sent: Saturday, November 02, 2002 10:07 PM
Subject: RLS - Symptoms & Mirapex Dose

I started taking RLS medication in August 2002 after finding RLS info on the web, and then going to a neurologist. He prescribed .5 mg Mirapex just before bedtime. Prior to this, I was taking Vicodin as needed to get some "good" sleep at night. 

My first Mirapex dose caused terrible nausea, to the point that I was close to fainting. I managed to slide my body off the bed onto the floor, keeping my feet up on the bed, broke out in a profuse sweat to where I was soaking wet, and then cooled off as the I started to recover. This happened 3 times during the night. 

The nausea lingered until about noon the following day. A follow-up call from the doctor suggested that I switch to a lower .25 mg initially. I still felt some mild nausea with this lower dose, but nothing like the first night. About 3 weeks later I increased to .5 mg, still having some nausea but it was getting to be less of a problem.

Question #1: Is this nausea reaction a common side effect? I did take 7.5mg of Vicodin at 1am that first night to help me get to sleep. Did that contribute?

I am currently taking1mg dose of Mirapex just before going to bed at about 11pm. I have not taken Vicodin since that 1st terrible night. But I'm about ready to try it again. I am still having problems getting to sleep, and getting restful sleep. 

My neurologist would not prescribe anything to help the sleep problem. I no longer have the severe RLS feelings in my legs at night, and do not get up and pace the floor. But I'm still very restless, maybe getting 6 hours of "half-sleeping". 

Question #2: How do I know when I am on the correct dose of Mirapex, and what can be taken to improve "good" sleep time?

During the day, I am sometimes tired - probably due to inadequate sleep at night. But there are times when I get so terribly tired. This is like a sleep attack, in that I almost have no control over it. It's most common just after eating, and lasts about an hour. 

During the most recent/severe occurrence, I dozed in a semi-conscious state, partially aware of things around me, but had totally no control over my body. I've also learned to be extra cautious if driving after lunch. If I take a walk when feeling like this, I feel light headed, like I'm in a cloud and/or a little confused.

Question #3 Is this type of extreme fatigue common to RLS, and have others experienced a connection to eating? Or is this entirely some other condition? (Note: I also take Prevacid once a day in the morning).

My daytime job requires a fair amount of sitting. My co-workers refer to me as Jack-in-the-box because I get up so much. I often just can't sit still and focus on one task for more than maybe 10-15 minutes.

Question #4: Could this be a RLS symptom also, and would taking Mirapex during the day also help this? (If so, how should the dose be determined? Same as before bedtime? Or should the current total dose be spread over the day?)

Question #5: What RLS symptoms might one have above the waist (feeling like my arms and body are shaking, but they are not? Etc.).

Question #6: Is it uncommon to have RLS symptoms both day and night?

Thank you for all of your support through this web site. You've help guide so many patients to be more knowledgeable in discussing this with their doctors. We sure appreciate it!

J. B.

Medical Reply
1)    Nausea may occur, especially when starting with a high dose of Mirapex.  I almost always start with 1/2 or one of the .125 mg tablets and increase the dose (only if RLS symptoms persist) every 5-7 days.  It is impossible to say whether or not the Vicodin contributed to your nausea, but the odds are that it did not.
 
2)    If your RLS is not bothering you, then you are on an adequate dose of Mirapex.  If you have no RLS symptoms on a lower dose of Mirapex, there is no reason to increase the dose.  If PLMD is disturbing your sleep, more Mirapex may be helpful, but only a sleep study can determine that.  Otherwise, only a sleeping pill such as Ambien can help improve the quality of your sleep.
 
3)    Your sleep attacks may simply be due to poor or inadequate nighttime sleep.  Eating (especially high fat content meals) helps promote sleep.
 
4)    Your daytime movement does not sound like RLS.  With RLS you must move to relieve the unpleasant sensations in your limbs, not general restlessness as you are describing.
 
5)    RLS can occur in any muscle but the symptoms are the same as lower extremity RLS.
 
6)    RLS usually follows the circadian rhythm.  With mild RLS, symptoms occur only at bedtime. As RLS worsens it occurs earlier in the day until with very severe RLS, patients wake up with active RLS.
Sent: Thursday, October 31, 2002 10:20 PM
Subject: help

Hello my name is Rachel IM 28 years old. I am almost 4 months pregnant. I have been recently diagnosed with RLS and I am very scared. The feeling I get in the night is a feeling of complete weakness in my arms and legs. The only relief I get is to get up and move. 

Most people describe it as a need to move but mine seems to be a need to move due to fear that I can't move. My symptoms get worse everyday. So this is my question. Is this a "normal" feeling of RLS of do you think I have been misdiagnosed? It is 1:30 am and I am still awake because I am scared to sleep. 

Also do you know if this RLS has ever been known to cause MS or even muscle or nerve damage?

Thank you,
Rachel

  Medical Reply

It does sound as if you have RLS.  It is often very hard to describe the feeling of wanting to move your affected limb, but if you get relief from moving, then it is likely RLS.  Also, RLS often comes or gets worse with pregnancy.  It does not lead to MS or muscle or nerve damage. 

Sent: Sunday, November 03, 2002 4:51 AM
Subject: drug holiday
I take 4 - 50 mg Ultram and 1 Mirapex a day for restless legs (also iron).  I have taken this for a couple years now.  I would like to take a drug holiday from the Ultram because it is not working  as well anymore.  In the past I have tried Percocet as a substitute.  It didn't work at  all.  

What could I use , how much, and how long is a drug holiday supposed to be?  Also, because of our insurance, I may have to switch from Ultram permanently to either Darvon, or Vicodin. I'm really upset about this because  it was a long process finding something to control my RLS.

Before we discovered using Ultram with the Mirapex, I took 4 mg of Mirapex a day to get a little relief .  Nothing else helped me.  I got RLS  after I took antideppressents and now I have it permanently.   

Without medication, the RLS starts about 9:00 in the morning and I pretty much have it all day and all night.  I have it in my shoulders and arms also.  Without the  Ultram and Mirapex, it was  a nightmare.  I'd rather be dead than live like that again.  Can you give me any advice? 

Medical Reply

    
It sounds like Mirapex alone does little for your RLS and that your RLS is quite severe as it starts in the morning.  You may be getting somewhat tolerant to Ultram or your RLS is getting worse.  Darvon is fairly weak and should likely do little for you if Percocet did not help.  Vicodin is similar to Percocet, but somewhat less potent.  My choice for a narcotic for you would be methadone, but most physicians have very little experience with this medication and would be quite reluctant to prescribe it for you.
 
Other choices might be to try Neurontin and then see if you need less Ultram, or this drug may help with an Ultram holiday.
Sent: Sunday, November 03, 2002 4:44 PM
Subject: cramping related to RLS?
I would appreciate any information that you have in relation to painful whole leg cramping being associated with Restless Legs Syndrome. 

Thank you, 
Anne T.

Medical Reply

There is no information available as they are not related at all.
Sent: Tuesday, November 05, 2002 4:59 PM
Subject: RLS 

What a wonderful website! My story is like so many others, have been fighting "the monster" most of my 68 years. Finally had sleep study a year ago and was diagnosed with sleep apnea and PLMD. I am on CPAP and Mirapex .25 to .50 daily. 

My other problem is arthritis. I have taken over the counter drugs till nothing helps the pain and stiffness. My question is---what would you suggest along with the Mirapex to take care of arthritis symptoms. My family doctor is not very knowledgeable about RLS and PLMD. 

My insurance will not cover the Ultram mentioned in so many notes. What about Celebrex? I appreciate any advice and thank you in advance.

Medical Reply

There should be no problems with Celebrex or other anti-inflammatory medications (such as Motrin, Naprosyn, etc.) and RLS.
Sent: Monday, November 04, 2002 8:10 PM
Subject: restless leg syndrome
I am 30 years old and in the last year I have been suffering from RLS. My Mother has it as well and has suffered miserably with it for the last three years. I thought that maybe just listening to her symptoms I was just imagining mine, but last night I had the worst night of my life. 

I finally have to admit that I do actually have RLS. I am not really looking forward to years of having to control it with medication, but I can't go on with this any longer. I have noticed that if I take any Sinutabs or cough medication that my symptoms get twice as bad and I maybe get 3 hours of sleep. 

I work 8 hours a day and have two small children that need my attention for the rest of the waking hours. I can no longer function on a few hours of sleep a night. I am very worried about addiction to any kind of drug, but like I said I am desperate to fix this, can you please help me?           

Charmon

Medical Reply

Firstly, stay away from over the counter cold remedies as almost all of them contain antihistamines which dramatically worsen RLS.  You will likely have to take medication (just like patients with high blood pressure, diabetes, high cholesterol, etc. must take medication) or else you will be quite miserable.

 
Mirapex or Requip generally work very well and are not addicting medications.

Sent: Wednesday, November 06, 2002 1:44 AM
Subject: restless leg

I was raised with RLS, so it is a habit of mine to shake my legs, everyone asks me if I'm nervous!!!!! I just turned 36, when I was 34it started going into my hands, Imagine, this is how I sleep both feet stuck between the end bed board, and my hand tucked under me. 

My doctors have given me Soma, which is a muscle relaxant.  It's not the muscle, it's the nerve.  I was prescribed Trazodone witch enflamed it, but if I took enough I went to sleep.

What can I do???? ......I fly every every weekend and it is MISERABLE!!!!!!

Help me,
Rhonda..

Medical Reply

Neither Soma or Trazadone are indicated or in any way helpful for RLS. Mirapex or Requip, when taken correctly should make your life go back to normal and you should have no trouble traveling at all.

Sent: Thursday, November 07, 2002 9:41 PM
Subject: RLS

I have recently been taken off of Trileptal and Zoloft.  I have never had a problem with restless legs before and now since I have been off of the medicine, the leg problem has arose (with a vengeance).  I barely sleep even though I am so tired I can barely move.  

The best way I knew how to describe it to my doctor is that my legs just won't go to sleep and they keep me up and jump around on their own a lot.  Can this problem be related to going off of these medicines?  Could I have been taken off of them too quickly?  

The reason I ask that is because for awhile after I stopped the medicine, I would get so dizzy-like and I could barely concentrate on anything.  I almost felt like I was in a trance and I was afraid to drive let alone walking up and down stairs.  

Please help me.  I am getting desperate for a solution to this menacing problem.   

Thank you, 
E

Medical Reply
Zoloft tends to worsen RLS more than helping it, but some patients do improve with this medication so it is possible (but not very probable) that stopping it may have precipitated RLS.  

Trileptal is an anti-seizure drug and its effect on RLS in unknown, but many anti-seizure do help RLS, so the same is possible with stopping this drug.  There is really no way to tell without restarting each drug separately and stopping them again.  The abruptness of stopping these medications likely has little to do with the problem.

 
Treatment with Mirapex or Requip should help you.
Sent: Friday, November 08, 2002 2:00 PM
Subject: Amitriptyline

I have been asked whether there is any less concern about an RLS/PLMD patient using amitriptyline as an anti-depressant versus the other tri-cyclics.  We know that, as a class, they can worsen the symptoms, but is amitriptyline any different?

Newt H.

Medical Reply

As a class anti-depressant medications are usually bad for RLS and Elavil (amitriptyline) is no better or worse than the others.  It is a very individual problem that can vary considerably from one RLS patient to another.

Sent: Saturday, November 09, 2002 10:59 PM
Subject: RLS

I am a 54 year old woman. I had kidney cancer surgery and colon surgery in a manner of a few months of each other. A month or so after I had these two surgeries I started getting tingling in both of my calves. Also when I would get up to go to the bathroom at night, it felt like there was blood running down inside my legs.

It was such a scary and weird feeling. I thought I must have some form of a blockage to feel this blood sensation. I would tell the doctors and they would look at me like I was nuts! As time went on I would wake up with this terrible pain like someone was scooping the back of my calves like scooping a melon against the rind.

It was excruciating. I would tell the doctors and they all looked at me like I was crazy. I told the Neurologist I wanted to go somewhere for a 2nd opinion. He sent me to another Neurologist and I told him all the above symptoms. While he was examining me I asked him if this was all just some kind of phantom pain? He said NO! He told me about this RLS.

I asked him if he had ever heard about the blood running down the leg part. He said that he had never heard it described that way. He said people would say liquid or Pepsi. I too almost cried and told him I could kiss him just because I was not some crazy nut. I also have rushes of hot and cold that run up and down my legs? Is that a symptom that anyone else has.

I am so fatigued. He gave me Mirapex and told me I would sleep. It did just the opposite. I was wide awake all night like I had drank 15 cups of coffee. I also had sweating and chills. My regular doctor then put me on Effexor. By day five I could not get a whole sentence out of my mouth. It was effecting my memory.

They have now prescribed Requip. I am scared to take it. They say on the Pharmacy notes that it is used to treat Parkinson's disease. I am not one who like to take a lot of pills and sometimes the side effects scare me more then the agony. I also have a lot of body cramps. Mostly my legs and feet but some times in my stomach back and other places.

I know that my mom had jumping legs and did not sleep a lot at night. she is deceased now and its kind of ironic that you can get on the computer and talk to other people and hear that you are not the only one going through this and that it is just not all in your head.

Good Luck,
Nice to vent,
RO

Medical Reply


If moving your legs relieves the feeling in your legs (at least for as long as you are moving them) then RLS is very likely as your problem. Mirapex and Requip are both Parkinson's disease drugs and are very similar. There is a reasonable chance that Requip may cause the same problems that Mirapex caused, but one can never be sure until you try it (only you can decide whether or not it is worth the risk).

Other choices would be pain killers at bedtime (Ultram or the narcotic pain medications) or possibly Neurontin. You should not have to suffer with proper treatment.


Sent: Sunday, November 10, 2002 7:39 AM
Subject: Mirapex

Have been taking one .25 mg. Mirapex in the evening for several months now with very good results.  I also take a 1 mg. Klonopin at bedtime.
My questions is,  I take the Mirapex sort of whenever I feel like it during the eve.  I have noticed that I will have a slight period of  RLS about one hour after taking the Mirapex.  It does not last long and is easily handled by just maybe walking through the house one or two times.
 
If I get a period or feel one coming on before I have taken the Mirapex and I quick take it, it does nothing to take it away - it may last one hr. or two.
 
So I guess I would say the secret is to take it before the time I would normally get restless which is about 9:00 or 10:00 o'clock but can it and does it bring on the symptoms or is it just co-incidental?
 
The other night I took it late but stayed up late and sure enough, I started to have a spell just as I had decided to go to bed.  I stayed up a while, walked a little and it was gone.
 
Thanks, 
Jan B. 67/Ohio

Medical Reply

RLS medication in general (and Mirapex and Requip in particular) work much better when taken 1-2 hours before symptoms occur.  They work much better to prevent RLS and do little to improve RLS symptoms once present.
 
It is likely that the RLS symptoms you feel one hour after taking Mirapex may just be RLS has not had a chance to be prevented by your Mirapex yet.  Taking the Mirapex earlier should take care this problem.  If not, then you have a rather unique reaction to Mirapex that I cannot explain.
Sent: Sunday, November 10, 2002 10:58 PM
Subject: sinusitis

Please help, what can I take for a bad sinus problem that won't send my legs into orbit? I have diagnosed RLS.

Medical Reply

Nasal sprays such as Nasonex, Rhinocort, Flonase (the steroid sprays) are very good to use for chronic sinus problems and will not bother RLS.  For more acute problems, many RLS patients can use the newer non-sedating antihistamines (Claritin, Allegra and Clarinex).

Sent: Monday, November 11, 2002 8:32 AM
Subject: Problems with PLMD

I was one of those people who successfully used marijuana for years to  deal with my RLS. 15 years ago I stopped. I had small children and  didn't want to mess with it. A few years later I wound up at the Stanford Sleep Center where I was diagnosed with RLS.

I have been using  Sinemet 10/100 3 ea. since with good results most of the time.
Apparently I am fortunate in this regard. I also take Paxil 20mg at bed  time. In addition to RLS, I now think I also have PLMD.

My side of the bed is always messed up and my wife tells me that my legs are moving a lot. I am reluctant to change medications but I wonder. Do any of the medications that have been discussed work for PLMD that I could use with Sinemet?

Medical Reply

Most of the RLS medications work fairly well and can be combined with Sinemet. Choices include sleeping pills (benzodiazepines or Ambien/Sonata), pain killers (Ultram or narcotic) or Neurontin. You have been lucky with 3 Sinemet per day as problems with augmentation and rebound start occurring frequently at that dose.

Mirapex or Requip work as well or better than Sinemet for RLS and also work very well for PLMD (especially as the dose can be increased without concerns for rebound and augmentation).

Sent: Monday, November 11, 2002 3:03 PM
Subject: RLS sufferer

I was so glad to come across your website.  I was diagnosed just this last June with RLS. I am 41. This has been such a nightmare for me.  Most of the letters I read are of people with RLS in their legs or arms also. I believe that I have RLS throughout my whole body. 

I went through a horrible summer not knowing what was going on with my body.  Which then brought on anxiety attacks.  I have had some relief with Paxil and Xanax.  My doctor just prescribed Mirapex at night for me. 

I have had very bad nights since taking this drug.  I am trying it for a week and then going to call him.  I would love to hear from anyone who thinks they have RLS throughout their body like me.  This has been a very depressing time in my life. 

I went from a very healthy 40 year old woman to one who feels sick daily and does not know if I will ever find true relief.  It scares me so much that one of my children will be afflicted with this horrible disease.  I pray constantly that they won't. 

If anyone has any good information for me I would love to hear from you.

Thank you, 
Patty H.

Medical Reply

We have had several patients with RLS complaints all over their bodies just like you.  RLS can occur in any muscle in the body.  Usually Mirapex helps, but for some patients this may have a paradoxically negatively effect.  If that happens, consider other medications such as Neurontin, Ultram, etc. may work better.

Sent: Thursday, November 14, 2002 8:57 PM
Subject: Medicinal Marijuana

I've written you several years ago about pregnancy and RLS.  I now have a two-year old, and take Permax for RLS/PLMD, with only moderate success in relieving my symptoms.

My brother works in law enforcement, specializing in illegal drug control.  I spoke with him about medical uses of marijuana, and he forwarded me some information on a legal and prescribable form of THC, called Marinol.  (Prescribing information can be found at www.marinol.com.)

Are you aware of anyone using this legal form of THC off-label for RLS/PLMD, and if so, are the results at all promising?

Thanks for serving those of us with this very inconvenient syndrome.

Laura P.

Medical Reply

I have several reports from patients both on the internet and in my office that use marijuana with great success. Some even need only a few puffs and get complete relief from their RLS.  Many get help only from marijuana when nothing else seems to help or is tolerated.
 
I have not seen or heard of any studies on marijuana or Marinol for RLS.  As RLS is a very understudied disease, I do not expect much information on this soon.  Now that Marinol is legal and brought down to schedule III from schedule II (which is more controlled and in California needs triplicate prescriptions) I may consider using it off-label for appropriate RLS cases.  After this occurs, I will post the information on our website. 

Sent: Friday, November 15, 2002 7:03 PM
Subject: RLS & tramadol holiday

I believe that my RLS is caused by a severe case of dural ectasia, secondary to Marfan's syndrome. I have gotten full relief from the RLS for the last 18 months from tramadol. I started at 25 mg 3 x day, and about six months ago had to increase it to 25 mg 4 x day because the symptoms were creeping back.

Now, again, I'm noticing the symptoms coming back and I don't want to increase the dose again, so I'm thinking of trying a drug holiday. Can you give some advice about how to do it, i.e. medications I can substitute to relieve the symptoms, how long I need to be free of the tramadol, and whether I should do it all at once or gradually.

I should mention that I also have Hepatitis C (from a transfusion during one of three heart surgeries) and therefore I need to keep my liver health in mind when selecting medications. I also take Sotalol, Cozaar, Warfarin, low dose aspirin, several vitamins and calcium.

Thanks for any advice you can offer,
Ellen

Medical Reply

Ultram (tramadol) is a good medication for RLS, but I only like to use it after trying other medication (that are not pain killers). Mirapex or Requip would likely work very well (and be safe) for your RLS and eliminate the need for Ultram. If these medications do not work then pain killers may be used.

I have many patients alternating Ultram with narcotics like Vicodin. Some will take alternate every few days per week and others will alternate by week or month. Drug holidays are very poorly defined for Ultram, but staying off the drug for a week or so should do the trick.
Sent: Saturday, November 16, 2002 7:20 AM
Subject: RLS and Akathisia
 
Thank you for your detailed and quick previous response email posted Saturday, November 02, 2002 10:07 PM; Subject: RLS - Symptoms & Mirapex Dose)

My RLS symptoms usually do not start until mid-to-late evening, and appear “under control” with Mirapex. I have reduced my Mirapex from 1mg to .75mg, and just started taking 5mg of Ambien. The past 2 nights with Ambien have been the first decent sleep I’ve had in quite a while – except for the few times when I took Vicodin. Last night I still woke up 4 times that I remember. But at least I got some good “deep sleep” time.

The best way I can describe how I feel during the day is similar to RLS, but more like creepies or jitters inside my whole upper body. It’s a little like the ache feeling one might have with the flu. I sometimes have this all day, or it sometimes starts in the afternoon while sitting at a desk, and gets worse as the day progresses. And the condition seems to be getting worse. 

I also have a problem sitting still at my desk during the day, and always want to shift around in my chair, or get up and move around. In continuing my search for information on the web, I came across Akathisia that sounds like similar symptoms.

Question #1: Is Akathisia related to RLS? And is it common to have both?

Question #2: Some of the web information suggested that Akathisia is drug induced. Could my current medication (.75 mg Mirapex; 5 mg Ambien; and 30 mg Prevacid) cause the Akathisia to get worse? Are other causes known?

Question #3: Is it common for an RLS patient to have to remain on drugs (Mirapex and Ambien in my case) indefinitely? Or might symptoms eventually improve?

I have other symptoms in addition to RLS, many common to those associated with fibromyalgia (without the pressure point pain) and CFS. And although my sleep problem has improved, it still is not what I would like.

Question #4: Are there tests that you might suggest I discuss with my neurologist?

Question #5: Are there any other things I might explore, based on this limited description?

Thank you again for all of your support through this web site. Your work is sure appreciated!

J.B. (I’m a 55 years old, male, 6 ft, and 155 lbs.)

Medical Reply

Akathisia is only similar to RLS in that some of the symptoms overlap.  They are otherwise two unrelated disorders.  Akathisia occurs almost always as a side effect of taking anti-psychotic medication (and rarely SSRI medication).  The motor restlessness that occurs with akathisia is as bad or even worse with standing, whereas the restlessness with RLS is better standing and much worse lying down or even sitting.
 
Many RLS patients do feel motor restlessness while sitting in the day (without actual other RLS symptoms), so it is much more likely that your daytime complaints are more related to RLS than anything else.  Although a minority of RLS patients can have remissions of their problems (sometimes even for years or decades), most continue with the disease at the same or worse levels as time goes on and therefore need medication for life.

Sent: Sunday, November 17, 2002 9:54 AM
Subject: PLMD Treatment

I am a 58 yr. old male. I have had PLMD for 8 yrs. I have been taking amitriptyline during this time as it is the only drug that has helped me sleep. After talking with my doctor, I am now tapering off of amitriptyline because it is causing me to be extremely sleepy in the early afternoon and require 2-3 hours sleep and am even tired when I get up.

I have been to 2 neurologists who have prescribed Mirapex, Sinemet, Permax, Neurontin, Klonopin, Tylenol #3, Methadone and Celexa. None of these meds have helped and made my sleeping worse. None of the doctors were concerned about taking these with amitriptyline.

Wouldn't there be some interaction with taking the medications while still taking amitriptyline? If so, should I retry some of these and which ones? After tapering off of amitriptyline, my doctor would like me to try topiramate (Topamax). I looked it up and found it is for epilepsy. Would this type of drug help?

Thank you,
Harry

Medical Reply

There is no known reactions with the medications that you have tried and amitriptyline (Elavil). If you have not done well with the previous drugs that you have tried, I would generally not recommend trying them again.

Topamax has no known proven benefit for PLMD, but like Neurontin (another epilepsy drug), this class of drugs may sometimes be helpful for RLS.

Sent: Sunday, November 17, 2002 4:35 PM
Subject: RLS

I have just been reading the letters from sufferers of RLS and am overwhelmed by the amount of suffering this affliction causes and amazed and comforted by the similarity of symptoms to my own case. I am 78 years old and have had RLS for over 40 years although only in the last 10 have realized it was a common problem and actually had a name.

I have one friend who also has the problem and is the only person I have been able to commiserate with over the years. No one else really understand what I am talking about. We refer to it as the creepy-crawlies or the heeby-jeebies, both of which names I have read in some of the letters. For years I self medicated with over the counter codeine which is available in Canada but it lost its effectiveness.

I am fortunate to have a doctor who is sympathetic and recognizes this as a legitimate ailment. She put me on a drug called called Trazadone which helped for quite a while and then became ineffective. This seems to be common with many remedies. I am now taking Trazadone and  Levocarb (a Parkinson's disease type drug) which is helping. I take it an hour before bedtime and in about half an hour feel slightly nauseated however this is gone once I lie down. I sleep then for five hours and am symptom free for another two or three but don't always return to sleep.

Sometimes I have to take a hot bath in order for the medication to kick in. In some ways this is a great relief as didn't have 5 consecutive hours of sleep for many years however I think it has also exacerbated the problem as I now suffer from daytime RLS which I didn't have before. I used to look forward to an afternoon nap or watching early evening TV but now get very uncomfortable and have to constantly move.

Some people talk about taking their own life and I have certainly had those thoughts and particularly worry about the time when I might not be in control (in a nursing home for instance) and free to roam around, take hot baths and showers or have access to the medications I want. Would be happy to hear from fellow sufferers.

Diana

Medical Reply

The levocarb that you are taking is likely a generic for Sinemet. This drug very often worsens RLS once the dose is increased over 1-2 tablets per day. This may be in part or completely responsible for your RLS occurring earlier in the day.

A better choice would be to change to Mirapex or Requip which will should work as well or better than levocarb and not cause worsening or your RLS.

Sent: Sunday, November 17, 2002 8:37 PM
Subject: Sinemet problems

I have had a restless leg/periodic limb movement problem for well over 8 years (am 53 year old white female). Current neurologist (not a sleep specialist) has prescribed Sinemet which helps some, but I need help going to sleep because my anxiety level is so high worrying about having an attack. Ambien helps tremendously and I don't feel hung over. But I've been told I have to go "off" Ambien every other week or so - and those nights are terrible. I also have a disc bulge at L4/5.

I have had success with Sinemet (first time in years) beginning about 6 mos. ago after years of unsuccessful options (nerve root blocks, PT, chiropractic, acupuncture, Neurontin, Ultram, amitrypline). My problem (pain/spasm/jerk) runs along the sciatic nerve root path (90% of the time on my right side--very occasionally on the left) - from my hip joint over my thigh to the calf to the second toe. The spasms run this path and reoccur every 15 seconds or so when an attack happens. I toss and turn, stretch, rub, dig my knuckles into the butt joint) I can only get relief if I get up and walk. For years it only happened when I was supine and happened either as I was falling asleep or woke me at 2, 4 & 6 a.m. The muscles along that leg are always really tight, especially the day after a bad night. The Sinemet has helped some - but seems to be wearing off now. I seem to need to take it more often in the night - it will curb an attack after about 1/2 hour. I start with 2 25/100 at 9 p.m. 1 at 11 p.m. another at 4 a.m. Tried the CR but it didn't work - seemed I had to augment it with a 25/100 too often.

In the last few months, however, I have attacks during the day or earlier in the evening or more frequently in the night after taking my usual dose. My biggest problem nights happen after sitting in an old theatre bucket-seat, slouching on a couch, or poor sitting in general. But sometimes it will happen mid day. I do sit a lot, but work for myself which allows me to take needed breaks, walk and vary my activities. I try to space the Sinemet out, but frequently still get attacks at 4 a.m. in particular.

My questions then:

1. Is poor posture/pelvic position triggering some of these attacks?

2. Can you tell me if increased dosage of Sinemet will cause constipation and if there is any connection with constipation and increased RLS or PLMD? Could the full bowel be pushing on something?

3. I worry about the constipation, augmentation and brain issues, like memory issues, forgetting common words, slurred speech -- how do you know when it's lost its effectiveness - and how much is too much? And the fact that my neurologist is not an RLS specialist.

Thanks for any advise and guidance,
Jennie C.

Medical Reply

I am not sure what is causing the constipation. It might be caused by a medication you are taking, but more likely there is some other cause. You should see your primary care doctor for this problem and in the meantime see if increasing the fiber in your diet (Metamucil for example) might help.

As you have already guessed, your problems are coming from the augmentation and rebound that invariably occurs with increasing doses of Sinemet (over 2 per day). Getting off of Sinemet and changing to Mirapex or Requip should resolve this problem. There is no real concern about tolerance/addiction with Ambien although it may not be a bad idea to take drug holidays (perhaps one weekend off every month or so) occasionally.

Posture, as far as we know, has nothing to do with RLS. Your poor memory and concentration may due to poor sleep quality due to your RLS (and current problems with Sinemet).
Sent: Friday, November 22, 2002 5:13 AM
Subject: RLS or Something Else?

I've suffered with RLS since I was eight years old.  I recently detoxed from Klonopin because I was so addicted to it.  Since I detoxed, the RLS has gotten a lot worse!  My hands and feet are affected severely.  Around 6:00 p.m. not only do I start feeling RLS in my arms, hands, and feet but also I start itching severely in both extremities, my back, and down the back of my legs. 

HELP, I'M GOING CRAZY! 

My doctor has me on Requip.  I take as low a dose as possible.  I tried Mirapex and it made me so nauseated I couldn't take it anymore.  Sinemet did nothing.  I'm also frustrated with the Sleep Disorder doctor I'm seeing. 

I'm just wondering if you've ever heard of these symptoms before???  Thank you for whatever help you can offer.

Maryann M.

Medical Reply
You do not say what dose of Requip you are currently taking or why you do not want to increase the dose until it is effective in controlling the RLS.  If you cannot increase the Requip due to side effects, then adding a pain killer (Ultram or a narcotic like Vicodin) may be very helpful.  Another choice would be Neurontin.

Sent: Friday, November 22, 2002 7:11 PM
Subject: RLS
 
I have been experiencing Restless Legs Syndrome for a little less than a year.  Not only does it reduce me to tears at night, but something as simple as watching television or taking a ride in the car can be agonizing.
 
I am afraid to mention this my my doctor for fear of being diagnosed as nuts.  Lets face it, it does not sound normal to say, "I can't sleep at night.  My legs jerk uncontrollably.  I can feel an electric pressure building up, and then, snap, there goes one of my legs." 
 
I am afraid of what people will think.  My husband says not, but I think that he thinks that I am losing my mind, and I have to admit that sometimes I question that myself.  (The only thing that I have tried that usually works is Mylanta).  I am pregnant now so I can't really do anything more drastic than that. 
 
Thank you, 
Julia W.

Medical Reply
RLS is not in your head.  It is a very real disease that afflicts up to 6-12 % of the population, so you are definitely not alone in your suffering.  Unfortunately, RLS worsens during pregnancy, especially the last half. 

As you have stated, the choice of treatment is quite limited during pregnancy, which compounds the problem.  Once your pregnancy is over, there are lots of good medical treatments for your problem.


Sent: Friday, November 22, 2002 10:12 PM
Subject: RLS
 
I have emailed you before about this. I keep seeing Ambien is addictive. I don't want to take it nightly but if I don't I don't sleep well and keep waking up. So, you have told me it is not addictive and I torn what I should do. My friend brought over her nursing book and it said Ambien was addictive. I am still confused.
 
I guess my bottom line questions is, will taking 10 mg or less of Ambien nightly be harmful to me?
 
Linda M.

Medical Reply
I can only reiterate that there are no reported cases of Ambien addiction in the medical literature nor does the PDR list addiction as a problem.  I cannot say why your friend's "nursing book" states that Ambien is addictive, but unless this fact is referenced in the literature it is without any meaning.
 
If you take any medication, even the most addictive, on an intermittent basis, there will be no chance of addiction.  Therefore, if you use Ambien 3-4 times per week the chances of addiction (even if it were a very addictive drug, which it is not) would be zero.

Sent: Monday, November 25, 2002 12:12 AM
Subject: effective times for meds

My medications include 1 Ultram, 1/2 tablet of Xanax and 3 Requip at bedtime around 8:00 p.m. Then I usually wait about an hour before lying down. My legs begin aching around 5.00 p.m. but I can usually tolerate the pain and restlessness by using my "bag of tricks." until time for meds.

I don't think I'm taking my meds at the correct time because I have a terrible time getting to sleep. Once I do I can sleep for 4-5 hours - that's about my limit. Would you recommend spacing the pills differently to be more effective? And would it hurt to take another Ultram or Requip. 

I'm going to try a trip to New York and the play doesn't start until 8:00 and , oh boy, that will throw me off schedule. Thank you for consideration and reply to this note.

Virginia/ 66/ WV

Medical Reply

The problem may be the timing of your Requip. Although an hour may be sufficient time for many RLS sufferers, some need 2 hours or longer for Requip to be working maximally. Try taking the Requip 2 hours before going to bed and if that does not help (you should have no RLS problems when going to bed with this regimen) completely, then you likely need a higher dose of Requip. If you are doing well at bedtime with this regimen but still cannot sleep the entire night due to RLS, then you might need another Requip or 2 immediately before going to bed.

With the correct dose of Requip (whatever dose it takes to eliminate your RLS) you should not need Ultram or Xanax.

Sent: Monday, November 25, 2002 6:57 AM
Subject: Side effects of Requip and Mirapex
 
I am presently taking Mirapex (12.5 mg.) at 6 p.m.  My sleep specialist also prescribed Requip (0.25 mg--two before bedtime), in addition to Ambien (5 mg) at bedtime.  My RLS symptoms have almost disappeared.  I also have acid reflux for which I am taking Prevacid twice daily. 

Ever since I've been on Requip, my reflux has worsened to the point that I have to sleep in a chair for most of the evening. My doctor told me to call my GI specialist to evaluate the Prevacid.  My GI specialist told me to stop taking the Requip.  By the way, larger doses of Mirapex also exacerbate my reflux symptoms.  Any suggestions?

Medical Reply
You have presented a difficult problem as you seem to be caught between the proverbial rock and hard place.  Your choice of drugs should depend on which disease is easier to control.  Prevacid is not the most potent PPI class of reflux drug and perhaps a change to one of the newer ones (such as Nexium, Protonix or Aciphex) taken twice daily may eliminate your reflux problems.
 
If your reflux cannot be controlled with the above measures, then a change from Mirapex and Requip may be in order.  You may have to switch to the painkillers (Ultram or narcotics or alternate them).

Sent: Tuesday, November 26, 2002 10:12 AM
Subject: Sinemet withdrawal

I'm 42 years old and was diagnosed with RLS almost 2 years ago. I also had Chronic Fatigue Syndrome. I take Sinemet 50/200 (1 1/2 tabs at bedtime). About 2 months ago, the chronic fatigue became much better and my muscles began relaxing, then I started having some Sinemet rebound muscle tightening during the day.

At my doctor's suggestion, I split my Sinemet dosage into a morning dose (1/2 tab.) and and evening one (1 tab). That helps some, but my doctor and I both agree that I need to get off the Sinemet. He's unsure on how to proceed with that. Do you have any suggestions as to how to get off Sinemet with the least amount of withdrawal symptoms? I only have RLS occasionally now.

My biggest problem is muscle tension in my back and I'm unsure just how much of that is the Sinemet which is one reason I want to get off of it. I'd appreciate any help.

Gina in New Mexico

Medical Reply

Getting off Sinemet can vary a lot from patient to patient, but here is my technique that seems to work well for most RLS sufferers. Start on Mirapex or Requip (in your case one tablet of the lowest dose) one hour before bedtime. At the same time decrease your nightly dose of Sinemet to 1/2 tablet from one tablet. If you still have some residual RLS, you can increase the Mirapex or Requip by 1/2 or one tablet the next day.

After one week, discontinue the Sinemet at bedtime and see if you need an additional 1/2 or one Mirapex or Requip to replace it. Once off the nighttime Sinemet for a week or so, you should be stop you daytime Sinemet dose and stay off the drug forever.

As you taper off Sinemet, you should have a sleeping pill (Ambien for example) available in case you have trouble sleeping.

A Reply from Gina

Sent: Thursday, November 28, 2002 6:37 AM
Subject: Photophobia

Thank you for your prompt advice regarding Sinemet withdrawal. I've printed it out and will get it to my doctor as soon as possible.

Another question I have is about photophobia and RLS. I've been sensitive to varying degrees all my life to flashing lights. (even back in the 70's during the disco years - a couple of hours with those strobe lights and mirror balls would keep me up all night).

We have a large screen TV and the last couple of weeks it has bothered me worse than ever. The flashes of bright lights, especially during commercials, really seems to bother me. It doesn't cause pain, it just seems too bright. Car headlights even seem brighter than before. I've made sure not to watch TV the last three nights and I'm going to sleep much faster than usually. When I do watch TV it seems to make my muscles more tense. Natural sunlight doesn't bother me at all.

My doctor suggested that it's probably always affected me, but now that I'm feeling better, I just notice it more. Is there a correlation to RLS and photophobia?

Gina in New Mexico

Medical Reply

There is no known relationship between RLS and photophobia.

Sent: Saturday, November 23, 2002 11:04 PM
Subject: Leaping legs

I have suffered from RLS for a number of years but have been able to get through the worst until recently. I find it impossible to sleep or even to go to bed some nights as my leg feels as though it needs to be moving constantly. If I sit or lay down then the "leaping" starts.

It is only ever in my left leg and will "leap" ten times or more in a minute, however, I haven't been able to count how many times per hour as I just can't stay still for that long. Once I begin walking around the "leaping" stops - until I relax again. During the last six months the RLS type feeling has been happening in both of my arms.

Now I'm really in a mess and don't know what to do for relief. I am currently taking Cipramil (mild anti-depressant) and I have recently started to have massages to see if that helps. Any advice you may have will be appreciated - especially with reference to my arms.

Sue,
Western Australia

Medical Reply

Once your RLS is occurring in your arms, you clearly have severe RLS. It is unlikely that you will make the problem better without good RLS medication such as Mirapex or Requip. This should help stop your leaping legs and arms.

The Cipramil (called Celexa in the USA) is an SSRI type of antidepressant medication that worsens RLS more than it may help it. If you really need this medication, you may need a mildly higher dose of Mirapex or Requip to treat your RLS.

Sent: Wednesday, November 27, 2002 12:28 AM
Subject: RLS

I have a question I have had 2 back surgery's and am going in for a 3rd surgery shortly. Why does RLS seem to be triggered by back problems? I am quite concerned that this 3rd surgery will increase the problems that I all ready have. 

I have been on Neurontin for 3 years and also Mirapex . 25 and OxyContin 40 mg x2 for my back. If I run out of the narcotic's then my RLS seems to kick in with vengeance why is this?. Am I going to have to have the narcotic for the rest of my life. And does this ever go away?  I also sometimes use soma for my back it seems to help a small bit.

Thanks Steve

Medical Reply
We have no idea why trauma in general and spine/back trauma is specific seems to exacerbate RLS, but in many RLS patients this is a big problem.  Stopping narcotics may worsen your RLS because you really need the narcotics to control your severe RLS.  You may need this medication for life unless you can treat your RLS with different medications.
 
Alternatives include increasing the dose of Mirapex to control your RLS.  You may want to try Ultram and see if you can alternate this drug with your narcotics.  Another newer alternative or addition might be Marinol (the active ingredient of marijuana) which seems to control RLS very well.
 
Soma has no role in RLS.

Sent: Wednesday, November 27, 2002 9:26 PM
Subject: Hoppy legs

I am a 48 year old female.   I have had "hoppy" legs since I was a small child. When I was young, it was manifested most significantly when we would drive in the car late at night coming home from relatives.  I would try to straighten my legs or move them to make the feeling stop and it could become so bothersome that I would cry...

As I got older it was significant when I traveled, especially on airlines, I would have to get up numerous times.  In my late 30's, I had surgery on my hip and due to a nicked sciatic nerve, developed RSD, which caused my legs to have shooting pain, like fire.

I had an electrical shock treatment where they hooked my spine directly to electric current  to shock the nerves into resetting.  While that did work on the RSD, it did nothing for my "hoppy" legs.

Now, it is problematic. Every night I notice my legs are "hoppy". Even straightening them out doesn't help. It seems to be getting worse with age.

MAK

Medical Reply

RLS does get worse as you get older. Mirapex or Requip should be able to take care of your "hoppy legs" and let you live a normal life.


Sent: Friday, November 29, 2002 8:10 AM
Subject: migraines and RLS
 
I have severe RLS, I get it from my toes to my hips and also in lower arms and hands.  I also have MS and vascular migraine syndrome.  Most types of migraine meds will actually make the vascular type, and RLS worse. I take another type, Maxalt.  I take Mirapex for my RLS. 

While on interferon (Betaseron and then Avonex) for my MS, I found that both my migraines and my RLS were getting worse and worse. When I stopped interferon both got better.  Because there seemed to be a connection between them, I wondered if I were perhaps having vascular spasms in my spine that was putting pressure on my spinal cord, thus triggering the RLS. 

I started trying my Maxalt when my RLS got beyond what a low level of Mirapex would control, and it helps!!! I'm hunting the net to see if anyone is yet doing research on this possible cause of RLS and the connection between it and vascular migraines.

Kat

Medical Reply
There is no known link with vascular disorders or problems and RLS.  As the cause of RLS is still unknown, anything is possible and your theory may be correct, but we have no way (other than through your observations) to prove or disprove your correlation of taking vascular medication (which may have all types of other effects) and RLS.
 
It is probably better to take a higher dose of Mirapex (prior to RLS symptoms getting worse) rather than using your migraine medication for that purpose.

Sent: Friday, November 29, 2002 7:31 PM
Subject: Question, please

I have had RLS on and off for the past 20 years. It worsens when I have mental stress. Now, when I exercise it's bad as well. I was given Ultram and have taken it for two years.

They told me Ultram wasn't a narcotic and wasn't bad for me or addictive, but after reading some of your answers to the letters it seems like you may feel otherwise. Please help.

Thank you,
Sincerely, Jackie

Medical Reply

Ultram (tramadol) is not a narcotic and has a minimal addictive potential. I have not seen or heard of any RLS patients having problems with tolerance or addiction to Ultram, but there have been reports of patients who use it for pain (generally when taken several times per day) getting addicted. When taken carefully (only when really needed) for RLS, addiction should rarely, if ever occur.

It is still better to take Mirapex or Requip before RLS symptoms occur to treat RLS rather than using the pain medications.

Sent: Wednesday, December 04, 2002 10:28 PM
Subject: PLMD Question
 
I appreciate your providing so much information on this website.  I've been reading through the responses and letters and haven't found any reference to my current concerns.  I am 43 and a sometime RLS sufferer (since a teenager) with frequent (every night, sometimes for several hours) PLM's.  Without drugs, I have difficulty falling asleep and staying asleep until around 5 AM, at which time I usually sleep deeply and start going into REM. 
 
I am taking Mirapex 1 hour before bed.  The first night taking Mirapex (.25), I had a VERY sleepless night with lots of lucid dreaming and at least 20-30 awakenings.  The subsequent nights were fine.  But, when I increased it the next week, I had the same problem.  My neurologist said to start and increase in .25 increments on a weekly basis until symptoms subsided (no more than 1.0 total dose).  Based on the information on this site, I've reduced my increases to .125 increments and am now at .375 mg. 
 
I haven't noticed any RLS since starting to take the Mirapex, and my sheets are still tucked in in the morning, so I assume the PLMD is better.  But I've noticed 2 other side effects: headaches and poor sleep quality my 2nd half of the night.  The headaches come within 1/2 hour of taking the Mirapex.  When I go to sleep, I fall asleep quickly (what a thrill!), but start waking up at irregular and frequent (varying from every 10 minutes to every hour) intervals about 4 hours later until I get up in the morning.  So, I still am not getting a good night's sleep.
 
So, for my questions:
-Are the headaches anything to be concerned about? 
-Should I increase continue to increase the Mirapex at bedtime, or consider taking a .125 dose when I wake up at 4 AM?  Or consider some other sleep aid?  Now that I am falling asleep for the first half of the night I want to stay asleep! 
 
Ann

Medical Reply
The insomnia/poor sleep may be from your Mirapex.  The more common side effect from Mirapex is increased sleepiness, but a small percentage of patients may get insomnia such as you are experiencing.  I generally titrate Mirapex by increments of .125 mg so that I can arrive at the lowest dose that controls the problem.  It is easy to titrate the dose for RLS as you simply increase the dose until your RLS symptoms are gone. 
 
It is much more difficult to titrate PLMD as you must really do a sleep study to see if you have decreased or eliminated the sleep arousals from the PLM's (the actual PLM's themselves are of no real interest unless they cause arousals which can only be determined by a sleep study).  Therefore, it is not appropriate for you to be titrating the dose of Mirapex for your PLMD on your own.  You may in fact need only .125 to eliminate your RLS symptoms and PLM arousals and higher doses may only cause more insomnia.
 
PLM arousals (if still present) can be helped by sleeping pills or Neurontin.  Another alternative would be to try Requip which may help your RLS as well as Mirapex but not cause the same side effects.

Sent: Sunday, December 08, 2002 8:21 PM
Subject: Quick questions

I have RLS and it definitely sucks. Anyway, you recommend Mirapex and Requip quite a  bit. Can these drugs in anyway make RLS worse in the long run, even if they hide the symptoms?

Can they instigate Parkinson's disease? Another question, is RLS really just a mild form of Parkinson's?

Thanks,
Sam

Medical Reply

Mirapex and Requip are safe in the long run. Most of the side effects that may limit someone from taking these medications usually occur within the first few weeks and they do not make RLS worse (such as Sinemet). They do not lead to Parkinson's disease and there is no relationship between RLS and Parkinson's disease other than they respond to similar medications.

A Reply from Sam

Sent: Monday, December 09, 2002 7:06 PM
Subject: Re: Quick questions

Thanks for the quick and informative response. I have some further questions: Can Mirapex effect dopamine levels in the brain or in any way permanently modify how the body produces or otherwise deals with dopamine?

If one were to stop using Mirapex, will there be anything different in how the body operates at all?  I guess I am just paranoid about using a drug that plays with receptors in the brain. I'm worried about long-term side-effects. But at the same time, if Mirapex is safe then I want to start using it ASAP.

Thanks,
Sam

Medical Reply

As far as we know, there are no changes in the brain due to using Mirapex on the long term. I have had patients stop this medication after using it for several years and other then the RLS symptoms returning back to the previous levels, no other changes were noted.
Sent: Monday, December 09, 2002 7:21 AM
Subject: Thank you!!

I am a 33 yr old mom and fitness instructor and have suffered form RLS for many years.  I didn't know how many people were afflicted with this.  Your web site has been great, it is like a support group online!  I was put on Neurontin and Depakote and they worked very well. 

However, I am trying to conceive and have gone off the meds.  It's been about 3 months and I am going through hell!!!!  I am lucky to get a straight 3-4 hours of sleep a night.  I am wondering if I will be able to stay off the drugs with out going crazy.

Anyway, I see a lot of different medications here that I have never heard of.  I will mention them to my doctor. 

Thanks for a great site!  
Sincerely, Lisa.


Sent: Friday, December 06, 2002 2:48 AM
Subject: restless legs and arms

I have been struggling with RLS for over 15 years now.  I initially went to a sleep disorder clinic for apnea, but was told by the doctor that my RLS was much more a problem for me than the apnea. 

After trying the anti-Parkinson's drugs, and then Ambien (which helped with sleep, but husband said my legs were constantly thrashing) I saw a neurologist who prescribed Klonopin.  I am now taking 2mg at bedtime, still often awakening about one hour after falling asleep with RLS still.  I take either 1/2 or 1mg more. 

Sometimes my legs continue, and even my arms, but I am not comfortable taking more Klonopin, thus I am up some nights for hours, walking, stretching, and generally going crazy!  Reading your information has peaked my curiosity about other drugs...possibly Mirapex.  Can either of these meds be taken in conjunction with a low dose of Ambien? 

My mother had mild RLS, I have it much worse, and my daughter began experiencing it at a younger age than my onset, so I do believe it is hereditary.  It also is driving me crazy....I dread going to bed often, knowing what my usual pattern has become.  I would greatly appreciate some feedback. 

I should mention that I was on Premarin and have recently stopped this med.  My RLS seems worse since that time, but I ceased the hormone because of all the "latest studies" and my doctor's suggestion that I try to do without  it if I can. 

Thank you for your time.

Medical Reply
Mirapex and Requip can be taken with Ambien and are much better choices for RLS and PLMD (your leg thrashing at night) than Klonopin.  You may not even need the Ambien if you can control your RLS with Mirapex or Requip.  Klonopin is one of my least favorite RLS drugs as it has a very long half-life and causes daytime drowsiness in a very high percentage of patients.
 
Hormones do seem to influence RLS, sometimes positively and other times negatively.  RLS is quite hereditary with at least 60% of sufferers having family members with the disease.

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