If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.
Sent: Wednesday, December 11, 2002 7:11 PM
Subject: Link to TIA's
I Have had some minor TIA's and just had a very severe one. After and while I still had not recovered my movement on my left side, I had really aggregated PLM/RLS on that side. Since then it has kidded up worse than ever. Has this been something that has been reported before? Just a question, one of many.
Thanks,
Laurie in So Cal
Medical Reply
We have heard of RLS/PLMD worsening after a stroke, but this happens only occasionally and is not a consistent finding. There is no explanation as to why it happens in some RLS sufferers, but not in others.
Confinement to one position for any longish period of time where I was supposed to be keeping still such as sitting for church service as a child was excruciating and my parents sometimes had to literally hold me down between them to keep me from bouncing all over the seat. Now airplane travel, long car trips or sitting in crowded theaters present logistical challenges to keep "the fidgets" at bay.
Normally I employ coping mechanisms such as getting an aisle seat, going to less crowded shows (or not going at all if crowds are anticipated), getting up periodically, stretching, and moving but the situation has gotten worse in the past few years and is seriously disturbing my sleep patterns. I used to be a decent sleeper. I would only experience the "fidgets" at night a couple of times a month at the very worst and I would easily return to sleep after some leg stretching but now it's up to four or five nights a week and it takes much longer to get back to sleep. A good night's sleep is something to celebrate.
My symptoms are feelings of vibrating electricity or buzzing, restlessness and the need to move, mostly in my legs but also along my back, shoulders and arms to a lesser degree. Sometimes it takes on a cramping quality and sometimes I start to feel claustrophobic in my own skin and a very mild panic sets in. Needless to say, I can't return to sleep or stay seated once this sets in and I must move, change positions, stretch, get up, walk around, drink some cool water to calm down.
Occasionally I take an couple of aspirin to soothe what ails me but I hate to overdo aspirin and once after breaking a bone I had Vicodin (sp) for pain and that worked very nicely to put me back to sleep but normally I just walk, fidget or stretch it off and try to get back to bed to catch a few hours of sleep before having to get up. When the alarm rings I am exhausted.
My problems occur primarily one to two hours after falling asleep like clockwork or after being confined to a seated position for a couple of hours such as in air travel. The problem seems to be exacerbated if I am overly tired or overly stressed, creating a cyclic pattern of little sleep, stress from little sleep and worsened night fidgets. The lack of good uninterrupted sleep is making me quite emotional. (I was reading a list of "pet" names that people have for this thing and laughed till I cried then kept on crying for a few minutes. Very unusual behavior for me.)
The lack of good sleep is also naturally affecting my work performance when I must work morning shifts and can't catch up by sleeping later. Unfortunately I work in a "safety related" position that will most likely not permit drug therapy so I must cope as well as I can with homeopathic, vitamin and other home remedies. I work rotating 24 hour shifts but I do have some control over my schedule and have been coping to some degree by trading into as many evening shifts as possible but I am still stuck with a few early morning shifts per week where I barely function and then only with caffeine.
I am tired of just coping. Barely coping lately. Does this sound like restless leg syndrome and can you help me?
Medical Reply
I live in Gloucestershire England and have just read all the letters on the net Its nice to know I'm not the only one pacing the floor every night! I am a 46 year old female. I have tried just about everything mentioned.
Sinemet helped for a while as did Neurontin. I have tried homeopathy to no avail, endless vitamins etc. My RLS is certainly worse with alcohol. I work nights but they are as bad in the day. When walking around at night I always have a strong urge to eat something.
I also experience head to toe itching most nights but I notice nobody else mentioned this problem. I am currently taking analgesics which help a little but I feel my GP is sick of hearing about RLS.
Take care everyone.
Medical Reply
Sent: Monday, December 16, 2002 5:43 PM
Subject: Marijuana and Mirapex
I have recently been diagnosed as having RLS. I've smoked pot for years, and one of the reasons is that I always seem to sleep much better after. That makes sense looking back because marijuana is supposed to help a fair deal with RLS.
My dilemma is that I'm taking Mirapex, which helps, but my doctor recently recommended that I discontinue smoking marijuana completely due to the lack of information on interactions. I have noticed an increased sensitivity to marijuana, but simply scaling down the dosage fixes all problems.
I've been researching tirelessly the interactions between marijuana and a dopaminergic agents, but have come up with nothing. Is there a reason to believe that this could be an unsafe combination of drugs? I just hate to give up the practice because I sleep so much better with it than without!
My sleep doctor used to be a lung doctor, so I don't think he thinks very highly of the practice of inhaling burned anything. He doesn't seem to think very highly of the plant. But is there any medical reason to be concerned about an interaction?
Thanks so much, a response would really mean a lot!
Best regards,
Roger
Medical Reply
There is an alternative. Marinol, which contains the active ingredient of marijuana, THC, is now available as a prescription. Ask your doctor to write this for you then you can obtain the benefits of the drug without the harmful lung side effects.
Little is known about THC and its interactions with other drugs but there does not appear to be an overt conflict with taking it with Mirapex.
My hematocrit was as high as 47% in 1997 and has been in the 40-42% range during the past two years. I was getting more and more pain from RLS, have tried numerous meds and have been on Mirapex for a year or so.
I read the article in Nightwalker regarding blood donation and increased RLS problems. I started taking iron and within 10 days have had virtually no RLS problems as long as I take 3 -.125 mg tablets of Mirapex per day. Hope this helps someone else. If you want more info please respond.
Medical Reply
Have you ever heard of RLS affecting the vagina? I feel like the spasms go through my legs and eventually through the vaginal area. It is unnerving to say the least. I have never seen this addressed, and I would appreciate your input.
Medical Reply
Celexa may worsen RLS in about 40-60% of patients. Some patients feel no change with this medication while others actually get better.
The problem is we are also trying to have a child. My doctor knows very little if anything about Mirapex and he will not see his doctor again until June or July. My question is has Mirapex been found to cause male sterility in any cases? We have been trying to have a child for over a year and we do have one child already that took only a couple months to conceive. The only thing different is the medication that he is now on.
Medical Reply
I seem to have no luck and just hate the weight that I have gained. I feel great but am about 15 lbs. over weight.
Medical Reply
Sent: Tuesday, December 24, 2002 1:13 PM
Subject: Mental Illness Meds affecting RLS
I am a mentally disabled patient who has had RLS plus the Jerking plus
the "Charlie horse" spasms (which was said not to be part of RLS). But I
am also Manic Bi-polar Mixed with severe panic disorder.
My problem is
that all/any of the medications I need to take for my mental illness
seem to aggravate my RLS, etc symptoms ten times worse. Obviously this
is a major problem. Currently I am taking Sinemet 25/100 two at a time
6 times a day(12 a day and my doctor doesn't want me taking more then 8
a day) for the RLS....it is a problem around the clock.
My question...have you ever run across this before with the problems I'm
having here and do you have any suggestions?
Denise
Medical Reply
This is a common problem as RLS and psychiatric problems both occur
frequently enough to co-exist in the same person. You need to take your
psychiatric medication and as they can worsen RLS, treating the RLS
appropriately is very important.
Sinemet is the wrong drug for you. Taking more than 2 of the 25/100 pills per
day will almost always cause worsening of RLS (called augmentation and rebound)
and should be changed to a more appropriate medication such as Mirapex or
Requip. These drugs should take care of your RLS symptoms and permit you to be
on your needed psychiatric medications. There is also a long list of other
medications that can be taken for further control of RLS if necessary.
Sent: Tuesday, December 24, 2002 7:41 PM
Subject: Need advise
I have had RLS for about 25 years. When I first noticed symptoms, my physician
at the time referred me to a neurologist who diagnosed the problem as RLS. At
that time, I was told there was nothing they could do to alleviate the
symptoms. (I always have symptoms both day and night, not just during the night
as some people.) It wasn't until the mid-1980's when I found a doctor who
prescribed Klonopin, and I used that for a while but the side effects were too
much--sleepiness during the day especially. So I quit taking it and would tough
out the episodes that I would have and then they would subside after several
days. Usually it didn't keep me from sleeping. I even have had long periods of
time when I had no symptoms.
During the last year, I have noticed symptoms again more frequently and the last
several months they have been quite severe. I finally decided that I had to get
some sort of medical treatment and I found this web site. Since it encouraged
me to seek a physicians advice, I went to an internist who claimed he new
something about it. However, on the first visit I had trouble getting him to
prescribe anything for relief and he has only prescribed Ambien. I took it four
nights to assist sleep and by the 4th night I could hardly sleep and the
symptoms are worse than ever. I also had dizziness and nausea with it. I have
trouble with side effects on most medications, especially nausea and
constipation.
I called the physician today to get something else for treatment and he said
there's nothing else he can do until he does a physical on me. Then he
suggested that I exercise (aerobics and yoga was his suggestion), and that I
relax and see him next week. I have always found that if I'm having a severe
bout with RLS that exercise makes it worse, but this doctor said that wasn't
so. And I also don't think it's just a matter of "relaxing" to get relief.
My question is, does it seem that this physician knows what he's talking about
or should I get another one? I tried to talk to him about this site and the
information I found here, but he cut me off and made denigrating remarks about
getting advise from the web.
I am in a terrible state with almost constant "electric current" type symptoms
in my lower legs. How can I get relief? I'm about to go crazy with this.
Thank you for you time.
Medical Reply
It is hard to blame a physician for denigrating advice a patient gets on the
web as there is more bad advice than good information available. Unless he is
personally aware of the person writing the advice, he should not follow it
without further investigating it.
It is clear from your letter that your physician has little knowledge about
RLS. The current state of the art for treating RLS is Mirapex or Requip which
has an excellent chance of alleviating your RLS symptoms and letting you live a
normal life. You should seek another doctor who can use the advice from my site
to verify the correct treatment of RLS or find a doctor who has had some
experience using the drugs listed on my site.
Sent: Friday, December 27, 2002 3:24 PM
Subject: RLS
My father was diagnosed recently with RLS. He has been in great discomfort. He
was given a prescription of Sinemet 25/100's and at first this seemed to help.
After a couple of weeks, the RLS worsened and became as much of a problem during
the day as it is during the night. After reading some of the letters and doing
some research, it seems taking more than 1-2 Sinemet a day may worsen the RLS.
Is this true?
His doctor said that he could take as many as 15 and that there were no side
effects. Well, he has never taken 15, but he does take them now (one at time
usually) throughout the day and the night. (He's taking as many as 8-10 maybe
more every 24 hrs.)
Also, he has been dealing with many side effects even though
the doctor said there are none. He finds himself exhausted, queasy in the
stomach with a loss of appetite and completely groggy. Since he is already
extremely sick with COPD and late stages of emphysema, this RLS is just ruining
his days all together. Do you have any suggestions?
Thanks for any input.
SR
Medical Reply
Your father's doctor clearly has little experience with RLS. Taking more than 2-3 Sinemet per day will result in marked worsening of RLS in over 85% of RLS patients (called augmentation and rebound and well documented in the medical literature). He does not have to suffer as Mirapex and Requip are available and can relieve most RLS patient's symptoms most often without significant side effects.
Sent: Friday, December 27, 2002 11:13 PM
Subject: Pergolide treatment
For the past two years I've been treated with Sinemet, 1/2 tablet three
times a day along with 1 mg Clonazepam twice a day. After examination by team
of doctors at new "involuntary movement clinic" at a major hospital, they
recommended I start slowly on Pergolide and build up gently to be sure I don't
have any side effects.
I have a long history of high blood pressure, which is under control with medication. (I'm 79 years old and have had RLS since I was around 30, though it wasn't really diagnosed as RLS until about 10 years ago. My blood pressure now averages about 130/85.) From time to time, however, for some unknown reasons, my blood pressure drops way down.
My wife helps me control that by having me lie on my back with my feet up. Anyhow, my neurologist is in favor of my trying Pergolide but would like me to be in the hospital under supervision at least during the first week to see if the was a reaction that would cause a drop in blood pressure.
My question is whether there are cases of the use of Pergolide being a cause of low blood pressure and if so, under what conditions?
Thanks,
Prof. Bernard K.
Medical Reply
Most of the dopamine agonist agents (Permax, Mirapex, Requip) can cause hypotension (low blood pressure). Permax tends to have more side effects than the newer drugs (Mirapex and Requip). One cannot tell who will get the low blood pressure with these drugs until you actually try them.
Sent: Sunday, December 29, 2002 10:32 AM
Subject: Drug holiday
I have a question regarding drug holidays, I'm a 47 year old female, I've
suffered from rather severe RLS for 6 years (thanks to a couple of ignorant
doctors and overdoses of Sinemet, I have severe daytime augmentation and rebound)
Over the years I have been prescribed all of the following drugs: quinine,
amitriptyline, Neurontin, Clonazepam, lorazapam, Permax, Mirapex and Requip.
The most successful drug I've tried has been Mirapex. When I first started in 3 1/2 years ago, I thought it was a miracle drug.....I had NO symptoms at all for an entire month. Over time, though, I've had to increase my dosage gradually from the initial .123 mg 3 times per day up to .5 mg 3 times per day and even that's not working well for me any more. I've had no side effects from it, but I'm told that's a high dose, so I've been trying to take a drug holiday to no avail.
The first time was on Requip, but apparently on much too low a dose.... it didn't touch the RLS symptoms. The next was Permax (which worked OK in the past, but now didn't help at all). The last time I tried with Requip again, after learning I could take more than 1 mg per day, it worked OK during the day, but not at all during the night.
It seems that the more times I try to take a holiday from Mirapex (never been able to last more than 3 days) the worse my RLS symptoms become! Is this possible? This disorder is controlling my life more and more, I've been very depressed lately, it scares me that I'm worse every month, even every week.
What will I be like 10-20 years from now? I can relate to the RLS sufferer who said "I know RLS doesn't kill you, but sometimes you wish it would."
Brenda
Medical Reply
It does sound as if you are getting tolerance to Mirapex. This occurs in
less than 15% of RLS sufferers and is usually helped by increasing the dose
(which is safe compared to Sinemet). I have had some patients alternate
Mirapex, Requip and Permax changing from one to the other as tolerance became a
problem (most often after a few months) with some success (there does not appear
to be cross tolerance between the drugs for the most part).
Taking a short (several day) drug holiday from Mirapex has no known role but
should not make your RLS worse in the long run. There are other choices to
treat your RLS such as adding the pain killing medications.
Sent: Tuesday, December 31, 2002 9:08 AM
Subject: Restless leg syndrome
I have read all the letters on your website from people taking antidepressants,
etc. for relief. I have recently found that taking 3 - 1000 mg. capsules of MSM
(methyl sulfonyl methane) per day (morning, noon, 4 PM) has given about 90%
relief from symptoms. Now I can ride the bus home fairly sedately and even
watch some TV in the evening. These can be found at a health food store.
Jan M.
Medical Reply
Thank you for your info. We will post it and see if others can benefit from your experience.
I have two conditions that seem to oppose each other. RLS and anxiety/panic attacks. The third element is irritable bowel syndrome caused by anxiety. The anxiety is much better using SSRI's such as cipramil but the RLS increases badly with all serotonin and dopamine agents. I have tried most, apart from Serzone (Nefadazone) which may work but carries with it a risk of irreversible liver damage/failure.
With RLS I use Neurontin which controls RLS to a livable degree. Permax had awful side effects and Mirapex is not available here unfortunately.
My daytime quality of life certainly is better using a SSRI but the RLS
becomes intolerable. My psychiatrist says diazepam is the only way left but
whilst diazepam controls anxiety to a degree it doesn't help the panic attacks
and phobias that accompany them.
May I ask what you would suggest/prescribe?
Many thanks,
Ron
Medical Reply
I know all the bad stuff about Sinemet and augmentation. So I was surprised when my 22 year old son's doctor suggested a small dose for his mild case of RLS. (My only child to inherit it from me.) I didn't go into my knowledge (thanks to you!) of the perils of Sinemet, because you know how doctors hate that.
Anyway, here is my question. He said that Sinemet was an "old time" anti-depressant that they stumbled on as help for RLS. Is that true? Also, my son takes 40mg of Fluoxetine per day. Will these two medications tolerate each other? I could sure use your advice.
Thanks,
Pat
Medical Reply
I need some advice as my Dr. isn't too knowledgeable about RLS. After a sleep study diagnosed me as having apnea and PLMD I was put on CPAP and Mirapex .25 which worked fine for about 8 months. Then I started getting really restless in the evening and could not enjoy television or my computer.
When I complained to my doctor, he placed me on Ativan .5 mg which did not help at all, so he increased it to 1mg. Now if I take the Ativan in the evening, about an hour later I am more restless than ever and the same thing happens about an hour after I take the Mirapex, so that I am really restless at bedtime. This is quite annoying and I am at the end of my rope.
Am I going crazy or can you offer any suggestions? Thank you so much for such a wonderful web site.
Laura
Medical Reply
There are some patients who have only PLMD and no RLS who develop RLS after being given a Parkinson's disease drug (usually after Sinemet, but we have seen this after Requip or Mirapex). The thoughts about this are that as the 2 conditions are very often related, the dopamine drugs bring out the latent RLS (that would likely have manifested sooner or later) that occurs in over 40% of PLMD patients eventually.
I appreciate your insights and time spent answering emails. I have been
on Permax, .25 mg x2 in the evenings before bed; first pill about 8:00 p.m.
and the 2nd around 9:30 p.m. Permax seems to be the most effective for me
with the least side effects; I had insomnia problems with both Requip and
Mirapex.
The one persistent side effect, however, with Permax is chills lasting
sometimes a couple of hours. I have been on this dose for several months
now and these chills have not decreased an perhaps have increased.
Occasionally there are other minor side effects such as stomach distress and lightheadedness if I take the doses too close together but the most annoying effect are these chills. Do you have any suggestions about how to reduce these chills?
Thank you,
John H.
I was diagnosed with Restless leg syndrome about a year ago and have been on several medications until my doctor prescribed me IMIPRAM and NEURONTIN. I can now sleep a good night most of the time without my feet moving constantly. If I have a bad night I simply take two NEURONTIN and use a foot massage bath or have my husband massage my feet before bed, which helps considerably.
Medical Reply
What a wonderful web site! I'm so happy to have discovered such a helpful
place! I hope you can help me with my questions.
I'm a 32 year old woman who has had a hysterectomy and on hormone
replacement. I've had RLS since I was a child and tried a number of
medications for it, including Klonopin, Mirapex, codeine and Darvocet. The
RLS is getting worse, as now I even get it in the morning and it lasts all
day.
I'm on tramadol now, and that's worked miracles for my RLS. I started on one 50 mg pill a day and I'm up to 4 pills per day. The only problem is, that now instead of taking them as my symptoms arise, I pretty much HAVE to take them every day or I'll get sick! I get muscle aches, sweating, hot flashes, goose bumps and even more severe RLS when I don't take it.
I don't want tramadol running the show. I want to taper my dose down and be able to take it as RLS symptoms arise. I am going to try cutting my dose down 1/2 pill every week. My question is, since I seem to be experiencing withdrawal, will I ever get to a point where I can take tramadol as needed, or will there always be this dependency?
I'd hate to have to give up this drug completely, because it's worked such wonders. I don't want to have tramadol telling me when it's time to take another dose, but if that's the only way to get relief from my legs, I'll put up with it.
Also, regarding Mirapex. Do you have to take it for a certain period of
time before you get relief? Do you have to take it every day whether you
have symptoms or not, or can you just take it as needed? My doctor doesn't
know too much about RLS and only prescribed the Mirapex at my request after
I'd heard that it works.
Any help you could give me would be much appreciated!! Thanks so much!
Shara in Virginia
Medical Reply
I never really noticed until recently, how frequent these sensations have become. Are narcotics the only answer? I REALLY enjoy pain meds and DO NOT want to become dependent on them. PLEASE HELP!
Medical Reply
I suffer from RLS. I have been treated with Zanaflex. This helps because it is a muscle relaxant. My doctor has also treated me with Darvocet N. Now he refuses to give it to me. I have a lot of pain in my legs due to the restless leg. Do others out there suffer from severe pain?
And what can I do now that my doctor no longer wants to give me Darvocet. My pain is horrible. Why are doctors so afraid to help with pain. I am not addicted to it. If I don't have pain in my legs, I don't take it. Can you give me some advice?
Joyce G.
Medical Reply
First of all, your
website is very informative. I do have a few questions though.
Does RLS occur without sleeping difficulty? I have many of the same symptoms
but I only have a problem sleeping on occasion. I find my symptoms of an
uncomfortable feeling in my legs can occur, in the car, at my desk, lying
on the couch or any other state of rest. Yet, at bedtime I usually do not
have a difficult time falling asleep? Could I still have RLS even though it
is classified as a sleeping disorder?
Question #2, my doctor diagnosed me with RLS after a long discussion about my
symptoms and a physical exam. I have not had a CT scan, MRI, nerve conduction
test etc. Should I be checked for other conditions before he tells me I have
RLS?
Has anyone with RLS ever reported a fleeting electrical sensation that can
occur anywhere in the body? It feels like a jabbing electrical shock but only
lasts a few seconds. This can be separate or in combination with leg
sensations.
Thank you so much in advance for your help!
Lauren/New Jersey
Medical Reply
I was about to increase my dosage of Permax when the Mayo Clinic announcement surfaced. I was on Requip before that and it lost effectiveness at 2 mg, three times daily. I have just weaned off of Permax and am taking Norco, 5-325, three times daily. I am taking 1 1/2 of these tablets each time and it isn't stemming the severe RLS.
Would adding Requip to the Norco help? Or should I increase the strength of the hydrocodone? I can't seem to find anything that will work for me. I'm beginning to think that methadone is where I need to go. Is that stuff an addictive problem in itself?
Medical Reply
I was on the RLS web site, went on a chat line and S. C. RLS Support Group web sight was recommended. It is one of the best sites I have found for help. I have been on Neurontin 400 mg three times a day and sometime one late at night, for two months.
My doctor wants me to switch to Requip when the Neurontin side effects get too much (can not function if I take too much). The Neurontin is not working as well as it did two month ago. In the past I have taken as much Neurontin as 3200 mg per day. I could not talk right.
How long of a holiday do I need from the Neurontin? I will switch to 0.5 mg of Requip three time a day and take Ambien or Sonata to sleep at night if I need it. I don't sleep when I take the Requip. I don't know if Ambien or Sonata will help me sleep but I need to get off the Neurontin for a while.
Thank you very much for you time and help,
Bill in Illinois
Medical Reply
My wife has been battling breast cancer for 5 years (she is in her second recurrence, this time metastatic) and chemotherapy has greatly aggravated her restless legs syndrome, and has also led to peripheral neuropathy. While in her third course of chemotherapy, she was put on Paxil for depression. Aside from aggravating her RLS, Paxil also gave her tremors, night sweats, and other nasties.
The tremors persisted following termination of the drug. Trying to help her with the tremors, I started her on coenzyme Q-10, 100 mg am & pm. To our surprise, it didn't seem to help the tremors, but it did two other things: It largely relieved the peripheral neuropathy and it greatly diminished the severity of RLS, frequency of severe sessions of RLS, and dependence on codeine, her drug of choice.
Since coenzyme Q-10 has few side effects (it's an essential enzyme of the body) other than modestly lowering blood pressure, I would suggest anyone on other therapy consider trying it (I have no ties to the coenzyme Q-10 business -honest!).
Anyone else have any experience with this?
Eventually it got so bad that I would be up walking around until 4 - 5 in the morning. As most of you say, it is very difficult to describe, and even my doctor would look at me like I was nuts, and simply change the subject. Finally, I wound up with a sleep specialist and he diagnosed me with Sleep Apnea and Restless Leg Syndrome. I wanted to hug him, since he finally put a name on my disorder, and I knew I wasn't losing my mind.
Now I sleep like a baby, all night long, thanks to a CPAP machine (for the Sleep Apnea) and Neurontin (for the Restless Leg Syndrome) taken in three doses of 200 mg morning, afternoon and nighttime. Most people have no idea of how wonderful it is to go to bed and sleep all night, and wake up refreshed. Also staying awake while driving is pretty great. I used to, joke about getting my best sleep while driving, but it wasn't that far from the truth. I am not one who likes to take drugs, or anything that I don't have to, but in this case, it was take the drugs, or lose my mind, and Neurontin really works for me.
Find a good sleep specialist in your area, and get the medication that works for you. There are more of us out there than you would think.
Good luck,
I suffered from restless legs for some time and then I clicked on restless legs on the internet and got on some chat line with people telling about their restless legs and what they did about it. Quite a few said they found great relief by using Spring Valley's Calcium, Magnesium, and Zinc (3-4 dollars over the counter at Wal-Mart).
I was doubtful, but desperate so I tried it. In 2-3 days I had got completely away from restless legs...I wondered if it worked or not so I stopped taking the medicine twice and both time RLS. came back so I started the medication again and RLS. stopped. I'll never stop again. What a cheap relief!
Hope this helps others. It did me. And so far as I know, there are no side effects.
Oscar P. in Las Vegas, Nevada
I decided to wait until the drug of his choice (carb/levo 25/250) 2 tablets 3 times a day, was wearing off so I could more clearly describe my symptoms. I can set my clock for 8 hours and it wouldn't be any more accurate than my physical awareness of pain and aggravation. Presently, I am experiencing pain in my knuckles and wrist (similar to the sensation of carpal tunnel), tingling in my feet and toes, skeletal discomfort in my face especially surrounding my eye socket and length of nose, and my spine feels like is slowly being tugged out of my body.
I truly would like to know if this is just RLS or something in addition. A friend of my says it's very similar to
Very Frustrated,
Medical Reply
This is in response to the letter written by a 50 year old who requested to have a support site for PLMS. I started reading you letter and started to cry. I have suffered with a sleep problem for about 14 years. I have complained about vivid dreams that make me feel like I have been up all night and I could hardly function during the day because I was so tired.
I have seen doctor after doctor with no help. I too, finally had a sleep study done and just like you I had no idea my leg was jerking during my sleep. Because I was so vocal about my dreams the specialist did not see anything unusual about my sleep study to explain this problem, when he saw the pain in my eyes he agreed to use me as a sleep case with other specialists across the country and they came up with conclusion that I was waking up because of the leg movement during my dream stages and that is why they were so vivid.
He has put me on Mirapex, it has helped some, I go back to see him next week so I will let you know if he increases my dose or changes my medicine. Your letter touched me because I had read a lot about PLMS but you were the first person to mention too many dreams.
I just discovered this site and was very pleased. I did have a couple of questions. My doctor has been very helpful and we have tried several different kinds of medications. Sinemet worked for about three months, then my body seemed to adjust and has never worked again.
For some reason I have not been able to tolerate Mirapex or Requip. I feel like it alters my mind and when I try to lie down it's like I can't control my thoughts. About six month's ago we tried Neurontin and it worked well for about 45 minutes and then my face swelled up. I also tried Klonopin with no luck.
I finally got so depressed that my doctor got worried and called in a prescription for Lortab 7/500. It worked wonders! I have gotten to where some nights I can get by with half a pill. I never take more than 1 pill a night. Lately I can go with 1/4 of the pill and I sleep relatively good. I was wondering if this is okay.
I asked my doctor about getting addicted and she thought at this dose I should be okay. She did say we were going to keep looking for other medication. She says she would like to be able to switch drugs every three month's because she thinks my body adjusts. Does this sound normal for RLS or could I have something else wrong?
Thanks for your help. I should also tell you that she has told me to take a couple days break (from the Lortab) every week or so if I can take it.
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After an exam, he said he could not treat me because I take Nardil (I have unipolar disease and Nardil is the only antidepressant that works on the agitated major depression I get). I have been having insomnia since May 2002 as a result of benzodiazepine withdrawal (I completed a three year taper in September 2002). The insomnia has been getting worse.
I first thought the RLS (developing) was the cause. I now see that I have insomnia independent of rls AND insomnia which IS a result of RLS.
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It feels like an electric shock is sent into my legs and as fast as it comes, it's gone. Have you heard of this happening to other patients with RLS?
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I have been suffering with RLS all my life. I am now 76. In 1998, the RLS became a 24-hr. "affliction", and thought I was going to have a nervous breakdown. I was not on any medication at first. Then my internist prescribed Sinemet and then Permax but neither helped me.
I was referred to a neurologist and he prescribed Requip. Well I thought I found the wonder drug because it helped me tremendously. I have been taking 1 mg Requip 3 times a day for two years, but the bad side effect is that it gives me an enormous appetite and I gained 30 pounds in the two years.
Last week, my neurologist recommended that I wean
off the Requip by taking only 1/2 tablet 3 times a day and start taking
1.25mg Mirapex as follows: take one tab. 3 times daily for 7 days then two
tabs 3 times daily for 7 days then 3 tabs 3 times daily for 7 days. If this
works, then the Mirapex would be increased to 0.5 mg . I am wondering
what your thoughts would be on this procedure.
Thank you for your time,
Eleanor F.
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What antidepressant, if any, can we RLS sufferers take without worsening our RLS symptoms? What about Remeron? Has it been tried/tested yet?
Anything else?
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Would it help for her to take some of the info I have printed off the web to her next visit? Also, do you think she would benefit from some of the medications I have read about? I would appreciate any help you can give me!!!
Thanks,
Tammy
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I have been searching for side effects but this is not listed. I would be very interested to know if anyone else suffers this particular side effect which leaves me in a state of panic most nights.
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I still haven't found relief for RLS. I've gone from Permax (.25 mg, 3 times daily) to Requip (2 mg, 4 times daily) to Norco (10mg, 3 to 4 times daily) and am about to try Methadone. I don't like what the codeine does to me mentally. Will Methadone be worse?
With no relief and little sleep, I'm thinking suicide at times and have told friends and family about these feelings. In desperation, I tried some old Sinemet I had around and got some relief. I tried Mirapex briefly once but never got to a dosage that did anything.
I'm wonder how long it might take me to reach an effective dosage with Mirapex (if ever) and could I take Sinemet along with Mirapex until I reached that dosage? Or does it seem that with the severity of my RLS, Methadone is the next logical step?
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My doctor prescribed 1 or 2 of the 0.25 mg Mirapex to be taken at bedtime. One is not effective for me but two usually is. If I am having a severe RLS could I take three or do I need to take something else?
My doctor is not a specialist in RLS and I'm having problems finding a
doctor in San Antonio who can treat RLS and is on my Blue Cross
Preferred Provider plan so I am asking you this questions.
I would appreciate very much hearing from you.
Ricki H.
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Could Zoloft make RLS
worse. I have taken it for a few years but the RLS is getting worse and I am
now taking Mirapex .025 at 5PM and again at 9PM. It doesn't seem to be working
now. . I am wondering if the Zoloft is the reason?
Troy W.
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As I was speaking with a psychologist about Klonopin, which had been prescribed to me earlier for a short period for anti-anxiety, he told me that I had been diagnosed with RLS and put me back on Klonopin to relieve symptoms. It does work for me, because it lets me get much needed sleep. I don't have symptoms awake me when I take Klonopin at bedtime.
This RLS diagnosis is new to me, but after researching RLS, I truly do have the symptoms. I don't know what the future holds, but for now, Klonopin is working wonders for me.
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I went to see my neurologist, after learning that with Sinemet after you pass 3 pills a day your symptoms gets worse. I was up to 7 pills a day and I was still getting up in the middle of the night. So my neurologist prescribed Mirapex an hour after taking my first pills my arms and legs were at they worst I had to take Sinemet to calm them down is that normal?
So I'm back to 7 pills of Sinemet 'cause it takes a year before I can get an other appointment. What can I do? I so happy I found this site.
Thanks,
Michelle
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I am 37 yr. old female.
I have Bipolar Disorder (severe) BPI, mixed state, ultra rapid cycle, with
psychotic features.
My BP meds are Trileptal, Seroquel, Ativan, Wellbutrin, Lexapro (new
Antidepressant. works great), Levoxyl & Cytomel ( thyroid meds, those two).
I was diagnosed last year with sleep apnea and put on a CPAP. During a recheck
overnight study this year I was diagnosed with Nocturnal Myoclonus.
My son is also bipolar and is in the process of being diagnosed with Tourette's. I
have had the same movement disorder as he has now, but it was linked to meds
and called Dystonia.
My sleep doctor tried me on two Benzodiazepines, Clonazepam and then Restoril.
I stopped the 2 mg of Ativan at bedtime because I was taking these different
Benzodiazepines.
When I stopped the Ativan and I started the Clonazepam (Klonopin),
the very next day I was having this movement disorder (ticing) back again. It
is very bad and somewhat painful and quite embarrassing.
After a few days I
stopped it and went back on the Ativan. The "ticing/dystonia" stopped. When I
saw my sleep doc and told him what happened he tried me on Restoril. Same
thing happened, the severe ticing.
So I stopped the Restoril and went back on the Ativan. I have to take
the Ativan because not only does it stop the tic/dystonia, it stops the
kindling that I have overnight. I do NOT sleep without Ativan. By morning I am
manic.
The PLMD is only in my sleep. 500 times in less than 5 hours during the sleep
study. The only time I get Restless leg is when I am manic due to
antidepressant without a mood stabilizer.
I have read your information about the different treatments, Sinemet, Mirapex
Requip, etc. I am going to see a Neurologist next week. But nobody seems to
know what to do with me. My sleep doc has no clue about bipolar.
Can you give any medication suggestions that may help the Nocturnal Myoclonus,
without needing to discontinue the Ativan? Having BP I have learned to
research and advocate for myself. My doctors have always appreciated it.
Easier to explain things and they know I am understanding what they say.
Your site is terrific!
Thank you for your time.
Regards,
Julie in
Ohio
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I had had occasional RLS on going to bed, but after developing heat cramps in Las Vegas a year and a half ago, I had been dealing with what I thought was damage received at that time. Just 6 days ago, I was trying to think how I would describe the feelings in my legs to my doctor.
I suddenly realized it was the same as the night version, slightly modified. I knew my husband had done extensive research regarding RLS, and one of the things he had found out was dietary iron could possibly help. We had been on a vegetarian diet for a couple of years to lower my cholesterol, but as it hadn't helped, had switched to The Sugar Busters diet, which seemed to cure him of RLS. (It also reversed my fat numbers-good went up, and bad went down).
However, my problem continued for most of the last year and a half, but had cleared up pretty well this last fall, when I was taking extra iron due to my heart racing on after I got off the treadmill. My heart stopped acting up, so I backed off the iron, and the RLS came back with a vengeance in mid December. I started iron again 6 days ago, and got almost complete relief within 36 hours.
I have generally run borderline anemic to sometimes below range. I hope this lasts, as I felt I couldn't trust my legs not to cramp while sitting through church or a play, or driving. They hadn't, but always felt as though they might any minute.
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Several times a week I enjoy and benefit from your advice
and comments.
Hope you enjoy this poem. feel free to pass it along.
RLS POEM
MY JITTERY LEGS DANCE
FROM “BUGS” IN MY PANTS
FOR MY LEGS HAVE A FIT
WHEN THEY HAVE TO SIT
THEY MOVE ON THEIR OWN
AND I SUFFER AND GROAN
TO WALK AND MOVE I MUST
AN URGE I KNOW TO TRUST
I OBEY AS MY LEGS TALK
GO NOW, WALK AND WALK
I MOVE DUE TO STINGING PAIN
OH THE PAIN, THIS IS MY BANE
THE CAUSE OF ALL MY STRESS
IT IS FROM RLS I MUST CONFESS
* * * *
I FOUND WONDERFUL NEWS
THAT HELPED ME TO SNOOZE
I STOPPED COFFEE AND COKE
GOOD SLEEP THIS DID INVOKE
BY NOT DRINKING CAFFEINE
I NOW SLEEP MORE SERENE
SO MY FELLOW RLS KINFOLK
TRY THIS IDEA, I DO NOT JOKE
MARTIN ATKINS
NOVEMBER 2002
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The only other changes are that I have been taken off of Wellbutrin (150 mg at 11 am, taken for daytime fatigue from the Dilaudid) because I have had a recent seizure and I have been put on aspirin and Plavix for a recent stroke. Also, my hormones were stopped because of the stroke.
Can you tell me if the Dilaudid becomes less effective over time or if my changes in medications could be causing the problems with RLS?
Thank you,
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A Reply from Barbara
Does this seem possible and if so do you have a suggestion for what I can do to get the Sonata to work again? I have been on Restoril in the past, but have too much fatigue the next day.
Thank you,
Medical Reply
My husband has been diagnosed with RLS for several years. He never has gotten any relief as far as sleeping the night through. He has been on the highest dose of Requip for several months and has relief from the restless legs, but a good sleep eludes him.
His doctors refuse to give him any kind of sleeping medication. But that is not my main concern right now. He has been going to U.B. Dental school and every week the dentist finds more cavities that have started since the week before. They think this is medicine related. He is an insulin dependent diabetic.
Also, he has been getting "elephant skin" on his hands and feet, mostly between his fingers and knuckles, and the top of his feet. These areas have started to crack and bleed. Could this be side effects of the Requip? I have seen no mention of any of this in your site. I have gotten a great deal of information, though.
Thanks.
Phyllis S.,
Lewiston, N. Y.
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I am 49 and have suffered from RLS for at least as long as I have been married according to my spouse. Until I found your website, I thought everybody had growing pains and suffered with the discomfort of RLS. I am currently using Ortho Evra (birth control patch) continuously to control peri-menopausal problems and my doctor feels that this could be making my problems worse and has put me on Clonazepam.
Could Ortho Evra cause the sudden increase in my RLS symptoms?
Thanks for the insight,
Paula
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My problem with RLS started about a year and a half ago and tests for MS and lupus were done. The neurologist thinks it was a virus that attacked my spine and there are no new lesions. However, the RLS remains and have been taking Carb/Levo 25/100 every night since Sept. 2002.
Yesterday he gave me a new prescription for Carb/Levo 25/250 to take 1/2 in the A.M. if needed and 1 1/2 in the P.M. About two weeks ago, my primary care Dr. prescribed CELEXA 20 mg. for severe mood swings and I believe I've been depressed all my life but more so lately.
Do
you see a problem with either of these medications taken alone or together?
Thank you,
Pam M.
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The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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