Patient letters on RLS symptoms and remedies- Page 41

 

Kicking RLS/PLMD Patient


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

 

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Sent: Monday, April 22, 2002 11:30 AM
Subject: links between RLS and birth control pills

I have restless legs syndrome, and have noticed that it seems to be worst during the middle of my cycle, but does not seem to be impacted by iron supplements, and I had my Ferritin level tested; it was 75, normal. So I'm wondering about other hormonal causes during the menstrual cycle.  

Does anybody know if taking birth control pills can effect restless legs one way or another? I'm still nursing my third child so I can't take Mirapex yet, although I have a prescription, so I'm trying to get by for now.

Jan

Medical Reply

The relationship of female hormones and RLS is a confusing one.  Some women get worsening of their RLS just before their menstrual flow while others get it at different times in their cycles (such as you).  Many others (probably most) are not affected at all by their cycles. 
 
Hormonal treatment (estrogen replacement therapy for menopausal women or birth control pills for younger women) can also have quite varied effects on RLS (from worse to better to no effects). As you can see, there are more questions than answers at this point.

Sent: Tuesday, April 23, 2002 1:24 PM
Subject: Peanut butter & RLS

My son-in-law, a retired dentist, age 62 has a light case of RLS.  He has episodes every 2-3 weeks, and takes no medications for it.  When an episode occurs, he gets a heaping teaspoon of peanut butter, and it goes away. No other medication (if you want to call peanut butter a medication.
 
I have RLS nearly every night, and I regularly take a teaspoon heaping with peanut butter, and it helps it go away, in addition to my usual medications.
 
I hope this helps you in your research!
 
Frank B.

Medical Reply

Your treatment is a new one for me!  I will post this on our website to see if others may benefit from this simple and relatively safe "therapy".

Sent: Friday, April 26, 2002 12:15 PM
Subject: Question 


I have RLS/PLMD and in the beginning before they found out I had both of these, the doctor did a MRI, spinal tap, sleep studies all kinds of test. But when they did the MRI they found white lesions in my brain. We just had another one done and they found new ones. 

They ruled out mini strokes or tumors, and I have no signs of MS. But that is the only other reason they can think for them to be there. What I am asking is there any reports of anyone having these in there brain and growing with RLS/PLMD? There has to be a reason for them being there? Do you have any ideas on this at all?

Thank you very much,

Linda K.,
Crescent City, California

Medical Reply

There is no known association with RLS/PLMD and any abnormal MRI or CT scans of the brain.  It is actually quite common to see "white lesion" in the brain on MRI and the meaning or relevance of this finding in not well understood (both in RLS and other patients).

Sent: Sunday, April 28, 2002 9:33 AM
Subject: RLS better with Elavil
 
I've been suffering with RLS for many years and suffered extremely with migraines. Years ago my family doctor prescribed amitriptyline for my headaches but noticed that all my symptoms of RLS disappeared. 

Now I take Zomig for the headaches and asked my doctor to wean me off amitriptyline which he did. I had bad side affects with amitriptyline but then two nights ago I started having the terrible RLS symptoms so what do you suggest?

Medical Reply

Elavil (amitriptyline) is an antidepressant that most often worsens RLS.  There are some RLS sufferers, such as you, who seem to improve with this drug.  However, if you are having side effects from Elavil, then you must stop it.
 
Your RLS can be easily taken care of with Mirapex or Requip.  Speak to your doctor about starting you on one of these drugs.

Sent: Monday, April 29, 2002 2:51 PM
Subject: Vitamin E
 
I would like to know what your opinion is on Vitamin E helping RLS. I personally take Neurontin with good results but have a brother who refuses to take any prescription meds and keeps telling me about how he takes quinine and now is saying the "natural" vitamin E has helped him. He wants me to take it too. 

I will not go off my medication but have decreased it some gradually and was hoping to stay on a low dosage and use some of the other suggestions I have learned. Hope you can answer my question.

Julie S, age 58

Medical Reply

There is no evidence that Vitamin E has any effect or role in RLS.  There are always anecdotal reports of all kinds of drugs and a few patients will get relief, but whether this is a placebo effect or real in impossible to discern.  We do have a recent letter from an RLS sufferer who benefited from Vitamin E.
 
Quinine, also rarely helps RLS, so I am not sure what is really helping your brother.  Quinine is a drug, no different or safer than any other prescription drug.

Sent: Tuesday, April 30, 2002 8:25 AM 
Subject: Worsening RLS on Mirapex?


I am a 49 yr. old woman.  I have been diagnosed with fibromyalgia about a year ago.  I've had RLS for at least 4 years.  I hurt so bad I can't stand it.  Right now I'm sitting here typing this and rubbing my feet.  My knees hurt, my ankles hurt and my feet hurt and burn.  Rubbing does help but I'm about ready to go nuts because there is no time for relaxing.  I can't quit my job.  So I grin and bear it.  

My doctor just put me on Mirapex which is great for at night but what helps the RLS during the day?  My relaxation is crocheting, quilting and reading.  But right now I can't relax because of the constant rubbing of my feet and legs.  I get such a kick out of people that say to walk all the time.  When do you have time to relax.  That is very stressful in itself which I think leads to the RLS getting worse.  

Debbie G.

Medical Reply

Mirapex works well at night, but it can also work just as well during the daytime (unless sedation occurs as a side effect, mostly with higher doses).  Speak to your doctor about using this drug during the daytime.

Sent: Thursday, May 02, 2002 12:45 PM
Subject: RLS and PLMS
 
You gave me some very helpful advice when I wrote in November 2000, and now I'm back again.  I raised my nightly dose of Mirapex to 1 1/2 of the .125 tablets in February 2001, I think.  At first it worked like a dream, but soon I was often having to use various strategies--such as turning the light on again almost immediately, having a bowl of cereal , doing some reading etc, to get my legs to calm down again.  In the last couple of weeks, these strategies haven't worked.  I could get my legs to stop jerking by going to the computer etc but they would start up again almost immediately I got back into bed and I found that I was often having to take Xanax ( usually 1 /2 of .25 would do it) or one of my husband's Ambien in order to sleep..  

I took an extra 1/2 Mirapex in the night on one occasion, and 2 from the start on another but that didn't do anything.  So I decided that I would have to try what raising the dose a bit more would do.  As it happens, the last 2 nights, when I have been taking 2 of the .125, they have worked very well (though I don't feel all that great the following day).  My questions are:

If I have to raise the dose more and more, are doses of .375  or even .625 still considered  low or perhaps medium doses?  When does one start to get into the high range?  I assume that I shall have to increase the dose periodically, whether because my condition is getting worse with age or because I'm  in the 5%  who have augmentation with this drug .

How long has pramipexole been in use?  The drug book  "Worst Pills, Best Pills"  advises strongly against taking drugs that haven't been in general use for at least 5 years.  Of course, I wouldn't give it up, but I'm curious.

I shall be having a cataract operation sometime fairly soon (I hope!) and I'm quite anxious about the possible effect of the anesthetic.  Is there anything I should ask the doctor/tell the doctor.  Supposing my legs jerk at some crucial moment?

A couple of years(?) ago I noticed an intermittent tingling feeling in my feet.  This has now become, I think, continuous, goes up my lower legs and is the same for my hands.  Is this what other people with RLS experience?  It resembles a mild form of pins and needles.  Also, although I am still capable of walking reasonably briskly,  my legs feel  heavy and somewhat aching when I walk  (we have a large dog).  Do other people have the same experience?  I've had somewhat similar episodes of this heaviness in the past, so perhaps it is temporary.

And finally:  My legs occasionally feel weak and trembly; this usually goes off after a fairly short while, but it's an unpleasant feeling.  When I asked a neurologist I was seeing about headaches about this several years ago, he said it was connected to the leg problem I have at night.  Have you heard of other people with RLS having the same experience?

I shall be seeing my doctor soon, because I want to let her know that I shall be increasing the dose of Mirapex.  But she is not  knowledgeable about this particular problem or the medications for it.

Thank you very much for anything you can tell me

P.S.  When I had bronchitis a couple of months ago, I had a low fever for about 5 days, and my legs were absolutely calm the whole time.  It was amazing. As soon as I got better, they started up again.  I thought that it was bizarre, to say the least.  But I was certainly grateful.

Vivian R.

Medical Reply

Mirapex has been on the market here in the USA for about 5 years so it just about makes it off the list of "worst drugs".  The average dose of Mirapex for RLS patients is between 2-6 of the .125 mg tablets (.25 - .75 mg) per day.  I have had patients who have taken up to 3-4 mg per day, but that is for the very severe patients (that I often see in my consultative practice). I generally recommend that my patients increase their dose of Mirapex by 1/2 to one tablet (of the .125 mg) every week until they get control of their RLS symptoms.
 
Before surgery, it may be helpful to take a few extra tablets of Mirapex to prevent the RLS.  If that is not possible, then a pill or intramuscular shot of a narcotic (such as Demerol) would likely do the trick.
 
The pins and needles (called parethesia) are present in a minority of RLS sufferers (10-30%????).  This is a neuropathy that seems to be associated with RLS but is not understood at all (as to why it occurs or what to do to treat it).
 
Headaches are not a part of RLS.  If you get poor sleep from the associated PLMD (in which case you should be somewhat drowsy and fatigued during the daytime), then possibly this could help promote headaches.  Otherwise there should be no relationship between headaches and RLS.
 
Your observation of fever relieving RLS is a very common one.  The reason for this is also unknown (as is most of the RLS problem).

Sent: Thursday, May 02, 2002 1:22 PM
Subject: RLS
 
I'm male, 39 years old. I used to suffer periodic bouts of RLS (once or twice a year). On a scale of 1-10 (with 10 being intolerable), I would rate them a 5 or 6. There is a history of RLS in my family (generally females), and I seemed to suffer from it the least, by far.
 
For years I have been plagued with migraine headaches, which would sometimes occur as many as 3 or 4 times a week. The primary trigger for my migraines was nearly always visual (bright light, like sun flashing off someone's chrome bumper). I also suffer with an undiagnosed sleep disorder (although the RLS may play a part in that).
 
Ten months ago, I was involved in a horrific auto accident which nearly killed me. My physician was trying to treat my sleep disorder with a combination of different drugs (the primary contributor being Neurontin), and I fell asleep at the wheel on my way home from work. Fortunately I did not hit anyone else, but an overpass abutment. I broke one leg, both arms, my shoulder and neck. I have since recovered nearly completely. I refused to continue the drug "cocktails" for my sleep disorder.
 
Ironically, I no longer suffer from migraines.
 
The narcotic treatment for my accident recovery went from Morphine to OxyContin to Percocet to Lortab (over a  period of three months). It was when I tried to discontinue the Lortab (at my surgeon's recommendation) that I noticed the RLS has returned with a vengeance ó every night, worse than ever. I would rate the intensity as 8-9. Sleep is impossible. When sufferers describe feeling "frantic" to make the symptoms stop, I can only heartily agree.
 
As long as I take one Lortab (7.5mg) at bedtime, the symptoms do not occur (although I still suffer from poor quality of sleep, which is typical for me).
 
My orthopedic surgeon requested I try other drugs (Tylenol PM, Exedrin PM, etc) but I have yet to find an over-the-counter drug that relieves the symptoms.
 
In an effort to treat the RLS (and get me off Lortab), my primary care physician has prescribed Mirapex (which made me so ill I thought I was suffering from the 24-hour flu), Permax (which kept me awake,  I would sometimes go 2-3 days without sleep), and then Requip. This was tried over a period of 2.5 months and none of the three provided relief from RLS.
 
My doctor also had a blood-screen done and my iron was absolutely, perfectly normal (as was all the other blood work).
 
I have an appointment Friday May 3 to see a pulmonologist who specializes in sleep disorders, but would appreciate any other recommendations.

Rick B.

Medical Reply

Since you have tried almost all of the Parkinson's disease medications, it seems almost futile to try these again. We strongly advise our patients against taking over-the-counter medications like Tylenol PM as they usually contain antihistamine related drugs which will most often markedly worsen RLS.
 
I have many patients who do not tolerate or get benefit from the Parkinson's disease class of drugs and will usually put these patients on a narcotic at bedtime (such as you are doing).  Since only the narcotic is helping (the acetaminophen part of Lortab does not help RLS), I try to avoid using combination drugs that contain Tylenol. Despite its stigma, methadone is a very good RLS drug which is a pure narcotic.
 
If taken once a day, it is very rare (at least in my large practice where I have to see it) to get problems with addiction/tolerance to the narcotics.

Sent: Friday, May 03, 2002 3:20 PM
Subject: RLS


Praise God, I have found a solution for this horrible malady, at least it works for me. I suffered through quinine pills to no avail and then, while surfing H S N  , I heard Andrew Lessman selling his Circulation and Vein support.  I sent for a month supply and noticed that by two weeks the jerking had virtually stopped. That was a year ago and I had still a little break-through now and then , of RLS.

Recently my doctor insisted that I walk for my blood pressure and weight. I began to walk about 15 min. each morning and in a few days , no more R L S  at all !!!   I stopped all meds and still no RLS. 

Needless to say, I'm elated and I wanted to share this , hoping it will help someone.  What a blessing to sleep all night or sit through a concert without squirming and jiggling my legs !!

Thank God !!  
T.V.
Sent: Monday, May 06, 2002 9:45 AM
Subject: Topamax?

I've been taking Mirapex for restless legs and it has been wonderful in eliminating that problem.  I'm the one who at first was taking Sinemet for the restless legs until rebound and augmentation set in.  I was greatly over-prescribed on the Sinemet and though I haven't taken this drug for a couple years now, its rebound and augmentation effects seem to have never left me.  

I have found, on your recommendation, that Ultram has relieved those "Sinemet legs" very well.  However, my neurologist, doesn't seem to like Ultram too well and has a few other drugs he would like me to try instead.  

The first was Neurontin, which turned me into a zombie.  I didn't dare drive a car in that state.  My husband found me at the computer the first day I was on the Neurontin and he said I had picked up the computer mouse and was running it over the computer screen trying to control the cursor! I have absolutely no memory of that having happened, and it was a little scary. 

Anyway, the neurologist had me stop taking the Neurontin and now has prescribed Topamax for pain relief, while keeping me on Mirapex for my restless legs.   I didn't find Topamax on your list of drugs and would very much like your opinion of taking Topamax instead of Ultram for pain relief. 

Many thanks, 
as always Rita B.

Medical Reply

Although neurologists (and some sleep/RLS specialists) like medications that are not pain killers, but modulate pain (such as Neurontin), I am not a big fan of these drugs. I do use them at times (successfully), but only in a small percentage of patients.  The side effects seem to be worse than the symptoms that I am trying to treat.
 
The question of Topamax seems to come up every few months.  It is an anti-seizure medication (like Neurontin) and although there is no literature showing that it has ever helped any RLS patient, neurologists keep wanting to try it for RLS.  I have no experience with this drug (compared to the vast experience of some neurologists) and cannot add anything further to its use in RLS.
 
When my patients are doing well on low doses of Ultram, I tend to leave them on the medication indefinitely (and thus leave well enough alone).

Sent: Monday, May 06, 2002 3:13 PM
Subject: Do I have RLS?

 

I'm 46 years old and for the past year I've began to have symptoms of RLS. after about three months of horrible symptoms in my legs, which involved a tightness, a deep bone pain in my legs, pain in my ankles, and restless nights from 10:00 to about 3:00.  

I saw a doctor who thought I may have RLS, so the treatment began after a sleep study confirmed moderate periodic leg movement. My symptoms don't seem moderate at all I'm on two .5 mg Mirapex at night and often I also take Klonopin to help me catch up on my sleep ( .5 mg). The reason I'm writing is that I also feel this constant tightness in my shoulders during the day. All of a sudden I'll notice my whole upper body is in some sort of clenched position which I consciously have to relax. 

I used to take the Mirapex during the day also but had too much fatigue but these shoulder pains and tightness was on going then also. I'm wondering is this RLS? Am I on the right dose? On the right drug? I hope you can help

Mark B.

Medical Reply

It does not sound like the shoulder pains are RLS unless they meet the criteria:
 
1) Strange feelings (may be described as creepy-crawly, but sometimes can be actually painful) in the legs/arms which occur mostly at rest.
 
2) The unpleasant sensations are strongly associated with an almost irresistible urge to move the affected limb, and the movement provides temporary relief (generally, only while the movement is occurring).
 
3) The unpleasant sensations occur most severely in the evening and nighttime.
 
The dose of Mirapex (which is usually one of the best drugs for RLS/PLMD) is quite variable, but you are on a rather high dose as most need between .25 to .75 mg per day (often in divided doses).  Beware that Klonopin can often cause daytime sleepiness as it has a long half-life.

Sent: Wednesday, May 08, 2002 4:26 PM
Subject: restless legs
 
I've been reading about restless legs and wonder if that is what I experience many nights. I don't know that my legs actually move but it does feel twitchy or somehow like it tickles under the skin. I used to associate it with taking over the counter sleep medications and stopped using them.

They would cause this tickle sensation in my legs as well as my arms. I associated it with my joints-like a feeling of weakness. But now, even without taking anything mostly my calves get this feeling. It makes me want to tighten the muscles and flex. I thought it was some sort of stress build up so I massaged my legs a bit. that seemed to help some. 

I have always been tired. Always. I have very little energy. Regular exercise doesn't help. I am overweight. Always have been to some degree. Don't know if this is related. I only started  noticing the leg twitches the past few months or maybe the past year or so.

Medical Reply

It does sound as if you have RLS.   The criteria for diagnosing RLS are as follows:
 
1) Strange feelings (may be described as creepy-crawly, but sometimes can be actually painful) in the legs/arms which occur mostly at rest.
 
2) The unpleasant sensations are strongly associated with an almost irresistible urge to move the affected limb, and the movement provides temporary relief (generally, only while the movement is occurring).
 
3) The unpleasant sensations occur most severely in the evening and nighttime.
 
You do not have to have any leg jerks to have RLS.  If you have the above symptoms, then you most likely have RLS.
 
OTC medications such as antihistamines will usually worsen RLS, which may explain your problems in the past.  If the RLS is bothering your sleep, you may want to ask your doctor about prescribing Mirapex or Requip for your problem.

Sent: Thursday, May 09, 2002 9:59 AM
Subject: Restless legs - "twittery legs"
 
It was with great relief that I found this website.  I came across it when searching for information on taking magnesium in relation to leg movements at night.  For years prior to this I would suffer from what my Nana would describe as "twittery legs".  She would always complain of it late at night when she had been sitting for a long time.  As a little girl I was always a restless sleeper and forever turning over and over through the night.  In my early twenties this gradually started to worsen and I found myself complaining of "twittery legs" more and more often.  I would find it so hard to get out of bed in the mornings, always saying "I feel like I only just fell asleep"  I was always so tired in the day.    It was the feeling just as my Nana described, an ache in the legs, like someone pulling at my veins from the top of my leg - on the inside!  To relieve this feeling I had to move them, so I was tossing and turning all through the night and getting no sleep at all.  To not move my legs when this feeling began was agony.  This sensation  would come in both legs (although lately it just seems to come in one.)  It would also happen, not only as I was going to sleep, but in movies theatres and on planes. 
 
Now as I have reached my late twenties the problem has become one that affects me much more severely.  It was during one of my 'attacks', when I had it for about 3 weeks every night as soon as I got into bed and tried to sleep, that someone said magnesium was good for leg cramping.  During my Internet search, when I discovered a link between a magnesium site and a restless leg site, and learnt that what I was experiencing had a name, I was so thankful.  Finally my partner and I could do some research and find out that others, apart from my Nan and I, had the same symptoms.  More importantly to read of the different medications available was so heartening.  Now I had an idea of what it was and it's name, I went to doctor after doctor to find some help.  Some had never heard of it and just dismissed me with sleeping tablets and one actually just gave me a form to fill in on dealing with stress and depression!  I couldn't believe how many doctors knew so little of this problem. 
 
Finally one doctor gave me Permax to try.  These were of no help during this attack period, and left me feeling very dizzy and nauseous in the mornings.   Then I was eventually referred to a neurologist who really understood and fully explained the condition and it's link with dopamine in the brain.   Hooray!!  
 
He started me immediately on 0.5mg of Cabaser which did work at first and for about 8 months.  (I don't believe this is available in the US)  I went back to having a good period where the symptoms would come but only every 5 or 6 nights.  I increased the dose to 1mg.  The symptoms even stopped all together for a while and I thought this drug was the answer.    When the symptoms would return, I just increased the dose.  I was allowed to go up to 6mg max.  I am currently going through another attack.  The Cabaser no longer works to alleviate the symptoms (have I built up a resistance?)  I have just started with Sinemet CR 50-200 strength.  After 3 nights of tossing, turning and pacing the floor until 5.30 am it has yet to work. 
 
I have tried a lot of what is mentioned on these pages, tonic water for quinine, hot baths before bed and then during the night, walking on a treadmill in the night, sleeping with my legs raised, cutting caffeine completely....unfortunately without having success with any.  I now just get up, walk around, and keep busy trying to create a diversion, this is a great help during the night waiting for the lovely time around 5.30 am when I feel the sensation in my legs start to cease and I go into the deepest of sleeps.  From this time on I can always get sleep, I have no symptoms at all after this time. This still baffles my boyfriend and I, why can I sleep after 5.30 am without any symptoms?   My neurologist and I will keep trying different medications.  He says it is one of the most under diagnosed conditions he knows of.  He says that the Cabaser has had the best results on his other patients, most elderly.  
 
At this time I am so grateful for this site and all the letters that have given me so many different ideas to try and a knowledge that others are sharing this experience.  It is odd to think that this brings so much comfort but it does.  

Sally T., age 28, 
Perth, Western Australia

Medical Reply

Cabaser (cabergoline) is available in the USA under the name Dostinex.  It is not used here as it is very expensive.  It is used a lot in England and other countries.
 
It may be difficult to figure out why you cannot sleep later than 5:30 am even when the RLS is not bothering you. Some people's biological clocks just go off early in the morning for no good reason.
 
Other drugs to try are Mirapex or Requip.  Using higher doses of Sinemet (more than one 50/200 tablet per day) is fraught with danger of rebound and augmentation of RLS symptoms.
 
Other choices to treat RLS include the narcotics and Ultram.

Sent: Saturday, May 11, 2002 2:19 AM
Subject: RLS and Acupuncture

I am quickly falling into the desperate category with my RLS.  Lack of sleep is ruining my life and medication (Sinemet CR)  helps intermittently. 

My question is acupuncture, has it been tried?  I have heard it works for other muscle related problems.  Why not RLS? 

Mary F.

Medical Reply

Acupuncture has been tried for RLS with variable and usually very limited success. There is no reason not to try it as this is a treatment modality that generally causes no adverse problems (except for the cost), but the chances of improvement is small.
 
Part of your problem may stem from the use of Sinemet CR.  If you are taking more than 50/200 mg per day, then you may be worsening the RLS from augmentation or rebound.  I find that my patients do much better when changing to Mirapex or Requip (with or without the addition of some ancillary RLS medications, such as bedtime sedatives or pain pills).

Sent: Sunday, May 12, 2002 4:59 PM  
Subject:
Going crazy

I have had it severely now for 30 years. Runs in my family. Saw my mother utterly destroyed by it in the end, mentally. I have had to undergo rehab twice from a multitude of benzodiazepines taken over this time. One drug did cure it permanently,  Rohypnol. Problem was in the end I was taking 5 mg a night, but it worked.

 
Am now off meds but I am desperate. I average 2 hours a night and the mental nightly battle is being lost and I feel close to some kind of breakdown.
 
I am not sure what to do anymore.

Medical Reply

So far you have only been treated with benzodiazepines (Rohypnol, which is not available here in the USA, is also a benzodiazepine). Medications such as Mirapex or Requip take care of the RLS problems much better without concerns of addiction/tolerance. This should take care of your RLS symptoms. 

If not, you can add small doses of pain killers (which includes the narcotics or the non-narcotic, tramadol).


Sent: Saturday, March 09, 2002 3:49 PM
Subject: RLS Sufferer ALSO!
 
I have had RLS since birth, or at least so my mother tells me.  She says that when I was infant, I was constantly drawing my legs up to my chest in sleep, and when I got older, I began kicking and twitching at night.  I was also a colicky baby, and was wondering if there have been any studies done to see if colic relates to neurological problems?  At this time, I have been diagnosed with both RLS and Essential Tremor, by a neurologist.

You can't imagine the relief I felt when I finally found a doctor who would listen to me and refer me to a neurologist, who promptly put me on Klonopin for the RLS and Inderal for the ET.  The Klonopin was working wonders at 1.5 mg, other than the fact that I could not wake up in the morning, and it often worsened the ET.  The Inderal is not really working for the ET, and in fact has worsened the RLS.  Now, I have a huge problem...recently, my gums began bleeding when brushing my teeth, cuts would not clot, and I had a menstrual cycle that went on for three weeks, where my normal is three days.  I called my neurologist, who told me to go to my primary doctor STAT, went there, and lost my Klonopin.  Apparently, Klonopin can cause thinning of the blood and this is what had happened to me. 

They were ready to send me out of there with NOTHING, until I raised the roof and insisted that the doctor prescribe something for me, as I am working full time and trying to go to school also, and without medical help, I do not sleep, period.  He has prescribed Lorazepam, which I am having to take 2 mg of to get ANY kind of relief, and I have noticed that since I have been off the Klonopin, the symptoms of RLS have gotten progressively worse.

 

My neurologist was nice enough to tell me that I am one of the worst cases of RLS that he has EVER seen, and he has been in practice for over thirty years.  But everyone wants to start me at the most conservative medication available, and the one that was working made me "bleed out".  You would not believe the bruises all over my body right now!  Anyway, I have symptoms of RLS 24 hours a day, all over my body, to include the tingling, itching, muscle twitches (which are visible to the naked eye), irresistible urge to walk or pull my legs to my chest, and so on and so on...it's driving me insane, and I can't take the Klonopin, and the Lorazepam is NOT relieving the symptoms, only making me fall into a drugged sleep eventually.

I have an incredible resistance to almost all kinds of medication due to heavy amounts when I was a child.  Any recommendations as to what I can say to my primary physician this Wednesday, because he seems determined to take over my case from the neurologist, and it is obvious to me from our conversation last week that he has next to no knowledge of my condition, or what drugs to prescribe?  The only reason he even gave me the Lorazepam was because, like I said, I raised the roof, and he felt safe doing it because it is in the same class of drugs as Klonopin and therefore should work...guaranteed, it is NOT!

Thank you,

Leslie

Medical Reply

Klonopin is one of my least favorite drug as it almost always causes daytime sedation and has a strong potential for addiction/tolerance.  Ativan (lorazepam) is in the same class (benzodiazepines) as Klonopin.  It has a similar side effect profile but has a shorter half-life than Klonopin, but can still result in daytime sleepiness.
 
Mirapex or Requip are the drugs that have the best chance of relieving your RLS symptoms and hopefully will not cause any side effects.  Most generalists have little or no experience with these drugs and may be very reluctant to prescribe them.

Sent: Tuesday, May 14, 2002 9:44 AM
Subject: Neurontin/Ultram not helping RLS
 
I was diagnosed a with RLS a while ago and have tried various medications. For many months I was fine with Neurontin (900 MG/Day) and Ultram (50 MG) at bedtime.

The symptoms seem to be getting worse lately.  During the day I can feel the tingling in my leg and muscle twitching.  At night, I am having more problems sleeping.  Sometimes falling asleep initially, but more often, waking up many times during the night.  I am waking up tired again each
morning.  We have tried adding an additional 300 MG of Neurontin at night then added an additional 50 MG of Ultram at night.

It is working a little better, but I am still waking during the night and feel tired in the morning.

Could I be building a tolerance to the drugs?  Would it be worth alternating with a different medication before these stop working all together?

Chuck

Medical Reply

Tolerance to Neurontin is not well described. It is more likely that your RLS is getting worse.  Mirapex or Requip are the next drugs to considering adding to or replacing Neurontin.

Sent: Wednesday, May 15, 2002 5:21 PM
Subject: My solution.
 
I have had RLS for a while now and my mother said that my Dad had it too. To make this short, my symptoms are exactly as everyone has described. The sensation in the legs, usually my right more then the left, and then the jumping every 30 seconds or so.

My cousin's wife was describing to my Mother that her daughter gets the leg craps at night and she gives her AtoB Calm. I had never heard of this product at the time, but my mother thought I should try it. I searched the Internet and found the exact product called AtoB Calm. It is a Freeze Dried Instant Calcium Magnesium Drink.  Completely Natural/Sodium Free. 

As described on the box.  You dissolve 1 tsp. in 1/2 cup of boiling water. I then add a decaffeinated teabag for flavor and sip it each night before bed. As long as I drink this each night, I do not have the restless night that I have had. If I stop drinking it after a few nights it comes back. I'm sold on this product and would recommend it to anyone suffering from RLS.  

It is also an excellent way for women to get their Calcium if used two or three times a day. I'm sure there are several online companies that sell this product. I found it at www.vitaminlife.com for $27.00 for 16 oz. container. Worth every penny.  I hope this will help others. 

Good luck,
Donna


Sent: Saturday, May 18, 2002 11:13 AM
Subject: Prednisone improves RLS?
 
I have written before, but a short intro:  I am a 67 year old female and have had RLS since at least puberty.  I have tried several medications, and am now on Requip, which does help considerably,  although there are times when I still can't get to sleep until after midnight.  My current dosage is .50 mg twice a day,  one dose at around 5:00 P.M. and the second before bedtime.
 
The reason for this inquiry is that I got in some poison ivy and was prescribed prednisone:  3 tablets first thing in the morning for 10 days.  However, they made me so 'hyper' that after a week I cut back to 2 and then one.   The strange thing was that during the time I took them my legs bothered me hardly at all!  I would even forget to take the 5:00 tablet sometimes. 
 
Now that may all be a fluke, since the severity does seem to run in cycles, but that is a long time for them not to bother me, regardless.   I mostly just wanted to share that and let you know in case, for some reason, it did merit attention.
 
Thank you so much for this site. 
 
Darlene

Medical Reply

I have many RLS patients who have asthma and get courses of prednisone from time to time.  I have not had any of my RLS patients note this relationship of prednisone helping the RLS nor have I read this in the medical literature.
 
We will see if any of our readers have noted improvement of RLS with prednisone.

Sent: Sunday, May 19, 2002 6:34 PM
Subject: MY REMEDIES
 

I am a 35 yr old male from Redlands, California.  I have known for almost 7 yrs that I had Restless Legs Syndrome. I was just like all the others. I did not know if my legs were coming or going. I just knew I had to move them. Sometimes they moved themselves. 

 

I often drink a case of coke a day. One day I just quit drinking coke and would only have drinks with no caffeine. The doctor who diagnosed me put me on Carbidopa. That lasted a week. I could not work the next day after I had taken the medication. So I stopped. After I quit with the caffeine my nights of no sleep ended. Though I jerked a little at night, nothing like I did while on soda. I was able to get a nights sleep with ease. 

 

Then on March 8th I was hit head on while traveling on the Ortega highway. All three bones (femur, tibia, and fibula ) all were compound fractures and comminuted. Ever since I got home I have not slept well at all. When I jerk now I jerk. I wake up screaming because of the leg fractures. I went to a check up Friday and told the doctor that I had restless legs. 

 

He turned to my wife and asked if I had sleep apnea. She said yes.  He then explained that the apnea has a lot to do with the inflammation in my leg or legs. He said that every time I stop breathing the O2 levels falls and any white cell that are helping me heal end up being inflamed. So over night all the times I stop breathing my white cells are attacked. So they are monitoring my O2 saturation tonight and they are going to research the results then help me with not only my healing but my restless legs to boot. 

 

So if I learn anything I will keep you updated as to what I hear. I really like the fact I can come to your web site and its local. Right now I am mailing what I find on the internet to family and friends as to what I find on RLS. Thanks for your support. 

 

Jeff D.

Medical Reply

Caffeine does worsen RLS in most cases and staying away from it is a very good idea.  Trauma is also commonly worsens RLS as in your case.
 
Sleep apnea does cause low oxygen levels, but there is no known relationship between this disorder and healing fractures, white blood cells or inflammation.
 
Mirapex or Requip should take care of your jumpy leg problem.
Sent: Tuesday, May 21, 2002 10:28 AM
Subject: Natural Remedies
 
I have restless leg syndrome which I believe started when I was young and has been getting worse every year, and lately every month.  I was being kept awake at night by "creepy crawlies"  and intense pain in my ankles and knees.  When I did sleep, I would awaken innumerable times throughout the night.  I always felt tired, lazy, and often emotional.  I have found several things that are working for me:
 
1.  Liquid Needle ReBalancer EX Drops.  At first I would try to go to sleep on my own, wake up many times each night in pain, then finally take the drops (3 - 5 under the tongue).  I would also apply a drop to my knees and ankles to relieve the pain there.  The rest of the night I would sleep uneventfullly.  Finally, I figured out that if I take 3 - 5 drops under my tongue before going to bed, I sleep all night with no problem and never have to apply any to my knees and ankles because I do not reach the pain stage any more.  After several nights of this, I am finally having energy and less pain during the day so I am more able to do routine things.  (If you get the drops, keep them away from electrical appliances such as computers, microwave, dishwasher, radio, TV, electrical outlets, etc.)  Call 1-800-886-6222 to order some.  (I have no affiliation with this company.  A friend let me borrow her drops to help out with some back pain I was having.)
 
2.  I believe that my Restless Leg Syndrome is caused by toxic buildup in my leg muscles.  I also believe that a build up of toxins has kept me from absorbing nutrients, such as Magnesium and iron.  Right now I am using herbs to detoxify my body.  Contact me in a few months to see how that is going.  To learn more about detoxification and medicinal remedies, see www.warnernaturalherbs.com, email:  warnerherbs@multipro.com, phone:  1-800-998-2131.  Located in Crossville, TN.  I have seen Mr. Warner speak at a seminar and he is very interesting.  He grows his own herbs and does not use fertilizers or pesticides. 
 
3.  I do not eat within about 3 hours of going to bed.  I noticed before I began using the ReBalancer drops and detoxing that my worst nights were when I had gone out to eat in the evenings.  My son, whom I believe has RLS, also has horrible nights of screaming and throwing himself around in his sleep when we go out to eat in the evening.  (We will begin detoxifying him this week.)
 
4.  Exercise helps me with my daytime symptoms.  One person said racquetball helped him the most, because of the fast, quick jerks and hops.  I do not have access to a court, so I hop, dance and play around with my kids!

Sent: Tuesday, May 21, 2002 4:49 PM
Subject: There is a god.....
 
I have suffered from this since I was a small child. I told my mother that my legs felt like running at night and it was very frustrating, because I wanted to sleep. Of course she chalk it up by telling me it was just growing pains. Well, I just turned 39 years old last week and I believe the growing has stopped many years ago. 

I cannot pin point my episodes. They just happen. I can tell you that during pregnancy I was a mess. And I noticed like one to two days before my period actually starts I get it. Or when IM real stressed out. It can happen once a month or three times that week. 99% of the time it is at night. But sometimes just laying down watching a movie or at a movie theater. Or long driving spells trigger it. 

I have always treated it with Tylenol, Morton, stretching my legs, or heating pad. Sometimes all of them in one night. Then I'm so tired in the morning. I always wondered what caused this. I was talking to my mother today and she was telling me how the doctor gave her medicine for her leg cramps. I told her I don't get leg cramps, I get a felling from the waste down like my legs want to run and run when my body from the waste up wants to sleep. 

I have spent many nights just crying in frustration. My Mom said this is called restless leg syndrome. Check the Internet and see if this is you. Thank God I'm not nuts. 

Thanks, 
Ginger,  California

Medical Reply

It does sound as if you have RLS.  It is easily treated (by doctors who are familiar with the treatment and the disease) by Mirapex or Requip which should help you sleep normally and not be bothered by your RLS symptoms.

Sent: Friday, May 24, 2002 8:03 PM
Subject: Thank you for the website.
 
Like so many others, I have suffered from this for years.  I can remember as a child, terrible leg aches, and when my grandmother would come to visit, complaining of my kicking her all night, though I didn't remember doing it.  I also remember my father having the same problem at nights for years. 

I am now 65, a retired nurse, and over the years tried almost everything that would provide relief.  Nothing seemed to make a difference. 

Last month, I had to have a two-vessel bypass, and while in the hospital trying to recuperate,  the restless leg syndrome completely interfered with my being able to get enough rest.  After getting home, in desperation I went to my G.P.,  explained my problem and he wrote me a prescription for Baclofen.  I called him back this morning and told him he had given my life back to me.  

After I had read a few of the letters, I noticed that it is seldom mentioned as a remedy, and after having such great results from it,   I was wondering why.   Unless you have experienced this malady for so long, and suddenly gotten relief from it, you wouldn't understand how totally grateful I feel.  My only regret is not looking for help earlier, and having waited so long.  My long suffering husband is now also able to get a good nights rest. 

Thank you so much for the website, and helping us to realize how many of us are out there.   This is a great support group..

Lois,
Northern California

Medical Reply

Baclofen is a muscle relaxant that has been tried for RLS, but usually helps only a small percentage of RLS sufferers and when it does help, most only notice mild improvement. 
 
Your case is unusual in that you have responded so well to Baclofen.  This drug is worth trying when the more common RLS drugs are not helping.

Sent: Monday, May 27, 2002 12:38 PM
Subject: Restless Legs Syndrome

As I write this, I am struggling not to jump up and shake my legs. I have not slept more than an hour a day for the past week. Needless to say, Iím exhausted. Two nights ago I resorted to a prescription for Trazadone, taking the prescribed initial Ĺ dose, a few hours later I took the other half. It did nothing except make me perhaps a little more woozy than I was already feeling. Last night my spasms were particularly severe so I took a whole dose with no results so a few hours later I took another. It could be my imagination but I think it made my situation worse. I felt my whole body was in spasm. My only relief is continuous walking. I did manage to sleep for 20 minutes after a hot bath with Epsom salts.  

I was 24 when I first experienced this sensation. Typically during stressful periods in my life for anywhere from a night to 3 nights max. The older I get the more debilitating the attacks.

In desperation I visited my doctor who is doing a whole series of blood tests. I have had a hypoactive thyroid for 20 years. I am now 46. I suspect I am peri-menopausal. My doctor suspects that is the case as well and may be a reason why my thyroid has gone wacky the past year. It seems to me that if the thyroid acts sort of like a regulator then all sorts of functions are likely to be affected.

Has anyone heard of results from live cell microscopy in terms of determining a cause and then treating it? I had this investigation done yesterday and was amazed to see what was going on inside my body from a tiny pin prick of blood. The result is that I am currently undergoing a liver cleanse and parasite cleanse (yes, they found tiny parasites in my blood! Yuck!) After a month we will re-evaluate and continue with the list of priorities.

I hope this gives me some relief. I canít continue this way. I am so sleep deprived that I have twice driven the wrong way down one way streets, my temper is short, thinking blurred and productivity at work has fallen significantly.

Regards,
Debirah
H.

Medical Reply

Relief is not far away.  Ask your doctor about starting on Requip or Mirapex.  Either of these drugs will help most RLS patients.  Trazadone (an antidepressant medication) usually worsens RLS.
 
The only parasite that can be found in the blood is malaria.  Medications such as liver cleanse and parasite cleanses are not part of traditional medical practice but are common in alternative medicine.  There are no good studies supporting their use or effectiveness.

Sent: Monday, May 27, 2002 10:00 PM
Subject: other names for RLS
 
So glad to find your website.  I was doing a search on Ambien and pregnancy and somehow came up with a link to your site.  I have had RLS since I was a small child.  I always called it "the itchies" and usually was teased by my brother and sister when I was complaining in the car about having the itchies.  However, my mother once told me that even as a toddler she would see my legs moving when I was sleeping.
 
Right now I am pregnant and my RLS symptoms have dramatically increased.  I have always had trouble sleeping due to RLS, but now I am only getting about two-four hours of very interrupted sleep per night.  My doctor has prescribed Ambien, but I only used it one night (it worked great) because I am so afraid of its affect on my unborn baby.  I was thinking of trying half a pill tonight but am still so worried about the baby so don't think I will do it.
 
Thanks for this site and all the info.  Can't sleep again tonight, so I am reading as much as I can on your site.
 
Janet

Medical Reply

RLS and pregnancy can be a real problem.  The RLS symptoms usually worsen during the third trimester and the drugs that can be used are quite limited.  Ambien is a class B drug, which is quite safe, but the better RLS drugs like Mirapex and Requip are still class C.

A Reply From Janet

Sent: Tuesday, May 28, 2002 12:33 AM
Subject: Ambien during pregnancy
 
Thank you for your quick response.  I was under the impression that Class B meds are not "quite safe" for pregnancy.  On the manufacturers website for Ambien, they say pregnant women should not take it.  On your website, in your section under pregnancy it is stated, "Class B drugs have limited data and experience and should be used only if clearly needed".  

Please clarify for me why you call it "quite safe" when there is limited data and experience.  Do you know of pregnant women who have taken it?

 
Again, thanks for your website.  I am finding much useful information.
 
Thanks,
Janet

Medical Reply

We are always very careful with pregnant patients and prefer to be overcautious rather than more liberal. There are very few class A drugs for almost any medical conditions so we end up using lots of class B drugs.  They are considered "reasonably safe" and most OBGYN's will use this class quite liberally. 

Still, they should only be taken if necessary.  If your RLS is as bad as you indicate, they may be warranted.  You must decide with your OB whether or not to take the medication using the above information. 

 
I have had a few RLS patients take Ambien and they had no problems.

Sent: Tuesday, June 04, 2002 1:16 PM
Subject: Celexa withdrawl and RLS

I am wondering if there is a relationship between antidepressant withdrawl and the onset of RLS symptoms.

I was on Celexa (10 mg) for over three years to treat anxiety. I went off the drug about 2 weeks ago. After about three days, I experienced restless and twitching legs at night, which I likened to a severe "growing pain" feeling. The description for RLS fits exactly with my symptoms. The uncomfortable and aggravating leg sensations have gotten worse, and are noticeable when I am at rest during the day. They also seriously affect my ability to fall asleep at night.

I have not been diagnosed with RLS in the past, though very occasionally had the symptoms while on Celexa. Is it possible that RLS is a withdrawl symptom? Or could this be the onset of the condition, which was "managed", and in a way masked, by Celexa? I have read on your site that many antidepressants can make RLS more severe, but have not come across any information that could link the cessation of taking these drugs with the onset or increased severity of the syndrome.

Thanks for any information you can provide!!

Although antidepressants generally make RLS, in a minority of cases they help RLS.  It is quite likely that the Celexa was helping your RLS symptoms and stopping it merely brought out the problem.

Medical Reply

 
The only way to prove this would be to restart the Celexa and see if the RLS is improved.  if you do not want to restart Celexa, Mirapex or Requip would be other choices to treat your RLS.

Sent: Wednesday, June 12, 2002 12:07 AM
Subject: RLS

I have suffered with RLS for about 15 years.  I first saw my family doctor about this problem 10 years ago. He ran several nerve tests that all came back showing no results. I was told to cut out caffeine, drink tonic water and to take walks. This did not work! 

I described my problem as having twitching legs at night, not knowing anything about RLS at that time, and apparently neither did he. Finally, must to my relief, and after several years of complaining about this, he recommended a Neurologist.

About 3 minutes into the exam, this doctor knew exactly what it was, RLS. Since that time he has had me on Klonopin 5mg per night. This worked up until about 8 months ago. Now it seems as though I have become immune to this.

I was wondering if you could offer any advice that I may suggest to my doctor. Thank you for the support group, and hearing me out. It really helps. 

Thanks,

Estelle

Medical Reply

Klonopin is not one of my favorite drugs (although it is used a lot by many doctors treating RLS) as it is addictive and tolerance can develop (as in your case). Mirapex or Requip are now the drugs of choice and work well in most RLS sufferers. Once on one of these drugs, you should not need the Klonopin.

Sent: Wednesday, June 12, 2002 9:52 AM
Subject: RLS

I have been treated for RLS for about 2 years and have tried various medications.  A while ago, I tried Mirapex and that gave me severe insomnia.   Up until know I have been on Neurontin with a second drug at night to help with sleep (Trazadone, Ultram and Ambien).  

They work for a while and then become less effective.  I also tried Klonopin for a short time, but as soon as I on your site how addictive it could be, I stopped taking it. I visited a Neurologist last week and he suggested Requip, starting out with 1of the .25 mg tablet at bedtime going up to no more than 2 of the .25 mg tablets. 

I tried one and it gave me insomnia and added the Neurontin and that seemed to help a little.  I tried two at bedtime and that made the insomnia worse.  It addition to insomnia, the Requip seems to make me itch a lot so that makes it even harder to fall asleep.

Medical Reply

It sounds like the Parkinson's disease drugs do not agree with you.  It might be a good idea to stay away from this class of drugs.
 
For patients who do not tolerate the dopamine drugs, I generally recommend using the pain killing drugs.  I will often use a narcotic (Vicodin, codeine or even methadone) and alternate it with Ultram.  This regimen seems to work for a lot of my patients and if controlled carefully, addiction or tolerance rarely occur.

Sent: Thursday, June 13, 2002 12:45 PM
Subject: PLMD
 
I have just been diagnosed with PLMD.  My questions are:

1.  I had 468 leg movements over 4.5 hours of sleep with 100 arousals.  Is that a little bad, moderately bad or really bad? 
2.  I am now on .25 mg of Mirapex at bedtime.  I cannot find how this will decrease the leg movements since Mirapex is an off-label use for PLMD. Is this how it is thought to work - By being a Dopamine agonist, the production of Dopamine is increased.  Mirapex works on the D2 receptors so that the involuntary muscle movement is decreased.  If not, how does Mirapex work for PLMD? 
3.  I am not seeing that people with PLMD have a greater risk of developing Parkinson's even though both involve a Dopamine deficiency. Would you agree? 
4.  My perception of my sleep issue is that I cannot go to sleep.  I know with PLMD there is a perception one has not fallen asleep because the leg movements cause arousal.  Do you think the Mirapex will help?  I'm taking 5 mg of Ambien and am trying to stop it and I cannot tell if the reason I cannot sleep is rebound, Mirapex (which can cause insomnia), the leg movements or my mild obstructive sleep apnea.  Do you think Mirapex will help? 

Thanks,
Susan H.

Medical Reply

Only the arousals with PLMD's are important for causing sleep disturbance (not the other non-arousing PLMD's).  You are having about 22 PLM arousals per hour which is considered a mild to moderate level of severity.
 
Mirapex is one of the best drugs of choice for PLMD.  We have no idea why it works (lots of theories, but we do not really understand how drugs help PLMD).  There is no relationship between Parkinson's disease and PLMD/RLS other than the dopamine drugs seem to help both.
 
The only way to know if Mirapex is helping you, is to take it (as you have been doing) and see if you sleep better and feel better during the day.  Some people do get rebound with Ambien (you can substitute a medication such as Restoril for a few days to get off of Ambien) and this could be part of your problem, but Mirapex can cause insomnia (or even sleepiness) in some patients.

 A Reply from Susan H.

Sent: Friday, June 14, 2002 8:36 AM
Subject: RE: PLMD

 

I was also diagnosed with mild obstructive sleep apnea (I think 9 episodes/hour with a maximum episode lasting 17 seconds and an O2 sat of 95% with one instance of it dropping to 92%).  My (board certified sleep specialist) doc wants to do a second sleep study for CPAP titration.  

I read that sleep apnea can be associated with PLMD and presumably, as the PLMD is resolved, so is the sleep apnea.  Do you think these two disorders are tied together or do you think they are separate and treatment for one does not affect the other?

 
Thank you very much, 
Susan H.

Medical Reply

Obstructive sleep apnea with 9 events per hour is considered very mild.  Although more than 5 events per hour is considered abnormal (many sleep specialists believe that in people over the age of 40 or 50 that up to 10 events per hour may be normal),  most sleep specialists (myself included) will not order a CPAP titration study until there are more than 15 events per hour (many even have a threshold of more than 20 or 25).
 
Sleep apnea and PLMD have nothing to do with each other.  Apneas cause arousals (which resolve the apnea) and may result in some body movement which may confuse the technician scoring the study to think that a PLMD has occurred. That is why it often appears that after CPAP was added, there are less PLM's.  Treating PLM's has no effect on sleep apnea.

Sent: Thursday, June 13, 2002 7:34 PM
Subject: Elastic Bandages
 
If this suggestion has already been posted (and I have overlooked it), forgive me.  I get relief from RLS symptoms by wrapping my legs,  from the ankle to the knee, with elastic bandages, at bedtime.  

If the symptoms are especially severe, I also wrap from above the knee to high on the thigh.  I'm careful to wrap firmly but not too tightly.  This approach may prove helpful to some of my fellow sufferers.

 
PHS
Provo, Utah

Medical Reply

There are many RLS sufferers who get relief from massaging, wrapping or using other pressure techniques to make the legs feel better.  There are many variations on this theme which does help a lot of sufferers.

Sent: Thursday, June 13, 2002 9:36 PM
Subject: Hepatitis C and Mirapex/Requip
 
I have recently been diagnosed with RLS and also have Hepatitis C from a bad blood transfusion 22 years ago (liver surgery). I am interested in telling my doctor about Mirapex and Requip for RLS. 

To the best of your knowledge do these drugs have any adverse impacts upon the liver.  My liver functionality is excellent at this point as my body seems to have the Hepatitis C in check. 

Thanks for the great site,
Gini

Medical Reply

Neither drug has any impact on liver function.  Mirapex is metabolized by the kidneys, so even if liver function is impaired, there is no problem or need to adjust the dose.  Requip, on the other hand is metabolized in the liver, so care must be taken in patients with decreased liver function (which is not your case).

Sent: Friday, June 14, 2002 7:26 AM
Subject: Ice swipe on RLS 

I am a 52 year old crazy leg person and don't sleep much. My wife uses ice on my bare legs when I have bad RLS attacks which are often unbearable.  I have her swipe my legs with ice then follow that with drying off with a towel.  I repeat this all over my legs. It feels wonderful and gives immediate relief. I take many medications for RLS but still need this additional treatment.


Sent: Friday, June 14, 2002 3:22 AM
Subject: My new RLS treatment
 
I have been on Sinemet CR and regular Sinemet for RLS for quite a number of years.  I had an increasingly bad problem with augmentation and rebound, and although I was sleeping well at night, (my original problem) the afternoons and evenings were becoming horrible.  I returned to my neurologist.  

He was very annoyed with me for not returning for assessment, for nearly two years.  However he suggested that I gradually take myself off Sinemet, and slowly replace it with an Italian drug from Upjohn, called Cabaser, or Cabergoline Tablets.  I am now on 2 mg of Cabergoline per day, (no Sinemet at all) taken with food in the evening, and am sleeping well and have no problems with RLS at all, during the day.  

I do however get quite tired after lunch, and find that I need to have a siesta, as I am 72, and retired this is not a great problem for me.  I thought this maybe of interest to some of your members, who are having problems with rebound.  I have had no noticeable side effects so far. Cabergoline has a much longer working life, than many of the other drugs available.

Kind regards to all sufferers of RLS,
Lionel R.

Medical Reply

You must be living in the UK or Australia as here in the USA we call cabergoline Dostinex, rather than Cabaser.  In addition, this drug is only approved for prolactin secreting pituitary tumors (the usual dose for this is only 2 pills per week) and thus the cost (if one can even get insurance approval) is out of sight.
 
We thus have little experience with the drug and use Mirapex or Requip which work quite well.

Sent: Saturday, June 15, 2002 9:23 AM
Subject: Sinemet withdrawal

I am curious as to how long it will take to withdraw from Sinemet.  I have been weaning down and today is day one with no drug.  I am taking Neurontin, also.  I dislike the Sinemet, it has made my symptoms worse.  I need to know approximately. how long I will have to suffer until it is out of my system.
 
Thanks so much,
Christina C.

Medical Reply

Tapering depends on the dose that you were taking when the tapering started.  The higher the dose, the longer it takes to taper.  Once you have stopped the drug, it should be out of your system in a few days.
 
Mirapex or Requip are often better choices to replace Sinemet when tapering as they work through the same dopaminergic system.
Sent: Tuesday, June 18, 2002 1:00 AM 
Subject:
RLS

My doctors say that I have RLS, and I have known for some time that I do.  I am wondering if it is common to experience the same "feelings" in the stomach?  Many time I feel the same sensations in the stomach and in the bottom area. 

 I have not heard of this happening too often and I was concerned.  Please let me know of any information that you might know of concerning this situation.

Thanks,
Melinda

 Medical Reply

 

There is not much information about RLS in the other areas (than the arms and legs) but we do hear many patients having other muscle groups involved.  The abdominal muscles can be involved (if that is what you mean by stomach) and likely the gluteal muscles (bottom) can also be involved.

Sent: Tuesday, June 18, 2002 8:37 PM
Subject: Treatment for RLS
 
I have been researching Restless Leg Syndrome and I am convinced this is my problem.  I have been to numerous doctors and they have never suggested that I may be suffering from restless leg.

The symptoms I have are a feeling of  pain  in my legs, mostly from the knee down and sometimes in the foot and hip.  When I am sitting inactive for a period of time, I feel the need to get up and walk and it does relieve the pain.  I cannot go to sleep at night because of the pain  and again  walking relieves this ache.

I have been given Vicodin for pain and it does help but I don't want to get addicted to this medication.  I did get my doctor to prescribe Klonopin but it did not work.

After reading some of the letters that were sent,  I am more discouraged than ever. I am sure my Father suffered with this condition for years  and it did get worse with age. Before he passed away he was on constant pain medication for his legs.

I am a 62 year old female and this problem is getting worse.

Thank you for any information you can share with me, 
Troy W.

 

Medical Reply

You should not be discouraged as RLS (it does sound as if you have this disorder) is generally easy to treat.  Most doctors know little about diagnosing or treating the disorder.
 
The best drugs are Mirapex or Requip which should be able to bring you relief without significant side effects.  Try to find a doctor who will be able to prescribe one of these drugs.

Sent: Wednesday, June 19, 2002 11:24 PM
Subject: effects of Permax without Remeron
 
I would like to ask a question on Permax am taking it about 8 months now (0.40mg, of which 0.10 at 1800 and 0.30 at bedtime. I also am on Enalapril. 3 1/2 weeks ago I stopped taking Remeron to see if it has a good effect on the RLS.

 In the evening and during the night it doesn't make a difference (I hoped to be able to start taking less of the Permax), but the daytime RLS is much, much better. I am not depressed, but I miss the Remeron which helps me sleep.  I am allowed to take Xanax 4 times a week,  but it doesn't work as well as Remeron for deep sleep and the other 3 nights I am not happy at all. 

And now my question: why am I all of a sudden the whole night so very, very hot from top to bottom and do I feel the Permax?  It wasn't like that with the Remeron. In the list of Permax side-effects this feeling so very hot is not mentioned. Can you explain this?

Thanks very much and greetings from,
 Corrie A., The Netherlands

 

Medical Reply

Remeron may help, worsen or not affect RLS.  It varies from person to person. It sounds as if the Remeron was not affecting your RLS but its side effect of sleepiness was helping you get to sleep.
 
I have not heard of your side effect of getting hot with Permax, but this drug does have a lot of side effects.  In the USA we are using Mirapex and Requip much more and they tend to have less side effects.
 
If these newer drugs are not available in your country, then using a narcotic like hydrocodone or a non-narcotic like tramadol might help you on the nights that you do not use Xanax.

Sent: Monday, June 24, 2002 4:35 PM
Subject: RLS & Zoloft

I was diagnosed with restless leg syndrome after  a sleep study.  I was told I kick my legs recurrently while sleeping.  I have been on Zoloft for about 6 years. (Maybe even longer).  I was told by the sleep doctor that it could aggravate the RLS.  So I weaned off it.  

Now I am having problems with my feet.  I get this tingly feeling (day & night) with particularly weird sensations in my big toes.  It wakes me up even after I have fallen asleep.  I have no other symptoms.  Could this be withdrawal from the Zoloft?  How long will it last if so?  Should I call my doctor?  This has been going on for a couple of weeks now and seems to be getting worse.

Thanks for your help!
Elizabeth

 

Medical Reply

The leg kicking is PLMD, not RLS.  You may indeed have RLS which may be the new sensations that are occurring in your legs.  Antidepressants may worsen RLS, but they may also help the disorder in minority of patients. 
 
It could very well be that this drug was helping you and now you are worse of it.  There is really no withdrawal from Zoloft but rather worsening of pre-existing conditions that may have been treated successfully by the Zoloft.






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