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My husband wakes up in the morning, severe night sweats, fatigued, and at a loss of what to do. He is also having problems with petechia (looks like large blood spots on arm). He takes no blood thinner which could cause this. He is also on no blood pressure medication. Are the night sweats, petechia, fatigue all possibly related to the PLMD?
None of the problems that you have
mentioned are related to PLMD.
There are 2 types of problems with PLM's. Those that cause arousals and poor sleep for the patient and those that do not (but do bother the bed partner). Unless you know how many arousals the PLM's are causing then you do not know whether or not they should be treated. If it is only bothering you, then we do not treat them.
We are not fully sure how Mirapex and Requip work for PLMD, but it is thought that PLM's are caused by problems with the dopamine system (different than with Parkinson's disease).
For several years I have been having symptoms in my legs at night that interfere with sleeping. After being in bed for a while, one or the other of my legs will begin to twitch or jerk involuntarily about once every 40 seconds or so, making it impossible for me to fall asleep. This happens while I am awake, either before falling sleep for the first time or after awakening during the night. I suppose it could be happening while I am asleep as well, but I don't really know.
Sometimes the twitching is preceded by a jittery sensation in the leg, but the sensation is not what bothers me. The twitching can happen in either leg, but seems to happen more often in the right leg. It almost always affects just one leg at a time. I can make the twitching stop either by standing up for 10 minutes or longer, or by repeatedly and vigorously contracting the offending muscle until it is fatigued. Neither of these strategies is conducive to a restful night's sleep!
I finally spoke to my doctor about it, and he says he thinks it is a variant of RLS. He prescribed Mirapex, .125 mg at bedtime. I've been taking it for about a week and have been symptom-free since the first night I took it.
I have several questions:
1. These symptoms don't quite seem to fit the usual description of either RLS or PLMS. It seems most like PLMS except it happens while I am awake. Is this unusual, or do others have the same thing?
2. These symptoms do not generally occur every night - more like 2 to 3 times a week. I read somewhere that Mirapex is most appropriate for people who experience symptoms every night. Is there any problem with taking Mirapex when the symptoms are less frequent than that?
3. I take melatonin (.75 to 1.5 mg) every night as a sleep aid. Does melatonin tend to aggravate these symptoms? And is it all right to take melatonin along with Mirapex?
H.S. (male, age 53, Evanston, IL)
As many others have said, thank you for this site! I just had a Cardiolyte (thallium?) stress test and on the way home from the hospital I began having RLS/PLMD like crazy!
I was wondering if there is something in the Cardiolyte that could aggravate RLS? I am due to go back for the second part of the test on Monday, and am a little concerned as that also involves an injection (of something!) and don't wish to go through this again.
I am taking Mirapex and Keppra for my RLS/PLMD....not under good control, but we are working on it.
I have been taking 300 mg. of Neurontin at night for about two years for my restless legs. I have noticed lately that by the time I get home from work my feet and ankles are quite swollen and are retaining fluid. As an administrative assistant I don't spend large amounts of time standing during the day so I am perplexed as to why this is happening. I am also very concerned. Could this be one of the side effects of Neurontin?
I've looked at everything from what foods I've eaten to physical activity, I can't figure out what would be causing these fluctuations. I take no extra medications that might be causing it. Have you ever seen this before, if so what do you think might be the reason.
I am interested in the use of melatonin to treat my insomnia. I have RLS, and take .750 mg Mirapex each night which works fine for the RLS, but leaves me with only 3 to 5 hours sleep each night, not enough to feel good. Can melatonin be used in high doses (low doses don't work for me) with RLS?
I have also just started a protocol of natural hormone replacement (estrogen and progesterone), which may help with the RLS, perhaps letting me decrease or even eliminate the Mirapex.
However, following a positive sleep lab result for severe chronic Sleep Apnea, starting the CPAP and continuing to have a partial sleep problem, I was tentatively diagnosed as having RLS and I was put on Klonopin and lo and behold I don't have to turn in at 7 pm every night! I am wondering if there's any connection between the tics of Tourrette's and RLS (or maybe PLMS, though I'm not positive what that is). You're doing a great service with this web site.
I'm a 47 year old guy diagnosed with RLS/PLMD 2 years ago and I've had excellent results with Mirapex. The Mirapex usually controls it well but I do know the symptoms may be worse if I am fatigued, if I have stayed awake more than 20 hours, and in the summer.
My main reason for writing is this - it may sound crazy or made-up to some but I am absolutely serious. I've had about 8-9 episodes of a strange phenomena at bedtime. Common factors I've identified are that I am always overtired, have been up and actively working for 20+ hours. I take my Mirapex and lay down rather than take it 1 hour before bedtime as usual.
Within 15-20 minutes I "feel" a warm sensation in my head that is followed in about 2 seconds by a sensation that I can only describe as a flash of a high frequency electrical buzz. I swear I can hear it. The buzz lasts only a fraction of a second. This may happen 1-3 times. On the last 4 occasions shortly after the buzz I start to feel a disassociated "floating" feeling - sort of like "the bed-spins" I had after a hard night of partying in college - but without the spinning sensation. I then feel a little nauseous so I think about moving in bed to reposition - but I can't seem to move.
Neither can I talk. What I can do is kind of moan. When I'm stuck in this "limbo" I moan louder and harder and then my wife shakes me and talks to me and the feeling instantly goes away. On the occasions I have this floating thing I may feel it 1 or 2 times in the next 15 minutes. Then I really do fall asleep.
It scares the hell out of my wife. She is convinced I have an underlying seizure disorder . I have no history of that, no family history of that either. The last time it happened was last night and I was aware enough of my "helpless" condition to know that if I moaned long and loud enough she would wake me up and end the "spell".
I have been suffering from RLS for 20 years I am 50 now. It is getting worse every day, I have been taking the hydrocodone for about 6 months regularly but I need a larger prescription and my doc want give it to me for fear I will become addicted. I don't understand if the hydrocodone helps me why she want prescribe it all the time for me to have relief. It has about made me crazy with no sleep for so long.
My husband rubs my legs every night and I hate to ask him after 15 years of asking. Most doctors I have been to never want to talk about my legs hurting, I don't think they understand Can you please give me some suggestions for my pain relief.
My recollection is that the RLS symptoms began developing sometime after both of these incidents (about 12-13 years ago). I was monitored at a local sleep lab 2 years ago and diagnosed with RLS. At that time I elected not to be medicated at all for the RLS (there was a feeling that I should be able to control this and that temazepam was a medication that I should not take every night) but the lack of sleep took too heavy of a toll on my life.
Temazepam 30 mg at bed time has been about 70% effective in allowing me to get 6+ hours of sleep a night. Without it I get about 2 hr. and pace, hurt, wiggle and jerk about. I feel as though I am doctor shopping for the doctor who will continue to prescribe temazepam so that I can sleep. I have seen 5-6 different doctors ( internists and GPs) over the last 13 years and find that there is great resistance to long term use of this drug.
This "physician reaction" has made me feel like a drug addict. I am not, I just can not sleep with out it. I am also on Atenolol for High BP and migraine control. I have many allergies to drugs and seem to suffer side effects to many drugs (am unable to take anything for high cholesterol) and have a reluctance to try something else just to get off temazepam when temazepam has been fairly effective.
Is it alright to continue on Temazepam indefinitely? Are there any reasons that the doctors can not prescribe it indefinitely and why is there so much resistance ? It causes me great stress to think that I will not be able to get the drug that allows me to sleep. I have been off of it for about two years and not getting much sleep until 2 months ago when I finally went to a homeopathic doctor in desperation. She gave me a 3 months supply. Now I must find an internist who will work with me toward an effective long term treatment plan.
I want a doctor who is familiar with and approves of all of my treatments, just one doctor that I can see for every thing. Should I try a different type of drug even though this one seems to be fairly effective? If I stay on Temazepam what should I use for the drug holidays? Ambien does not work for me.
I have been suffering from insomnia RLS for years and only Sinequan helped with the insomnia. I never connected it with RLS for several years, then my doctor told me to stop it, and my insomnia became fierce. Everything I tried gave me RLS and didn't give much sleep anyway. Finally Hydroxyzine did and I take 75 mg per night and sleep all night. However, the RLS was so terrible I was awake virtually all night.
Then I learned about Sinemet and Mirapex and Neurontin and my doctor has me on all three. However I am getting something I never had before, leg jerks during the day. So I'm taking extra Sinemet and Mirapex during the day. I want to stop them all, and just read on a message board that 4 grams of B-12 daily with folic acid works perfectly. I want to run out and buy a big bottle. I am wondering if it will help given that my RLS is caused by the hydroxyzine. I would like to stop the Mirapex and Sinemet and find out, but I am afraid of withdrawal if I do that.
What would you advise?
Several months ago you had replied to me via e-mail that you preferred other drugs to Neurontin. I think it was the Parkinson's drugs you preferred. Since I take Neurontin, I was wondering what it is that you don't like as much about Neurontin. I think I read somewhere a while back that it could worsen arthritis. Is this true?
Also, do you think it could make one's gums
recede faster? Or, is there anything else I should know about it that might
be harmful? I've already looked it up a lot on the computer, so have seen the
regular things like making one dizzy or stomach problems.
Thank you so much.
I don't get the usual strange RLS sensation that has compelled me to move my legs as in the past. The sensation is different, more of an electrical buzz firing the muscles to move. It is totally involuntary which is quite different from the RLS I have experienced. It seems to occur more readily when I am very tired.
I first experienced this kind of thing about 3 years ago while on a fishing trip. I had been taking Gravol for several days for motion sickness when it started to occur. Several weeks later I took Gravol while flying and experienced the same kind of thing again. I attributed the twitching to the Gravol.
Now I'm not sure what to think, as I haven't been taking Gravol since, but the symptoms are coming back with a vengeance. I have recently (~ 1 month ago) started taking sublingual B12, B6, Folic Acid. Also Vitamin E and CoQ10 Enzyme Supplements. I read that the Coq10 can cause involuntary muscle movements in large doses (~600 mg) but I had only been taking 60 mg. I stopped the Coq10 a week ago but to no avail. Could my symptoms be attributed to any of these supplements? These symptoms are robbing me of my sleep and causing depression, irritation, etc. It is now 3:20am and I still can't get to sleep.
Please. Can you suggest something?
His advice was to switch to Mirapex and go off the hydrocodone cold-turkey. He prescribed 0.125 of Mirapex at bed time and 1/2 tab three times a day. I had tried Mirapex before and had trouble with somnolence so I assume his reasoning is to titrate up slowly in order to adjust to the sedative properties of Mirapex. His recommendation was to stay on this regimen for a week and then increase the dose.
A Reply from Marvin
I know that my RLS is far worse in the two weeks before my period. During the day my resting heart rate runs about 75 or 80. When my legs are bothering me it runs 100. I went to my family doctor and he had me wear a Holter heart monitor for 24 hours, but he didn't think there was too much problem in this.
Is this a common problem? Should I pursue it further, or not worry about it?
I think of you often when my RLS has me walking the floor all night. My Neurologist is very kind and willing to help but I'm not sure she is always up to date on RLS and related "stuff,." I also have fairly severe neuropathy -- up both legs well past the ankle area. Currently I'm on Requip and Neurontin. I also take a number of other medications for CHF, atrial fibrillation, diabetes, fibromyalgia, and mild depression. I also use a C-Pap for sleep apnea. Old age is no fun!
Now to my questions: Is there any connection between RLS and fibromyalgia? And why do I seem to get more relief from RLS when I take a hot shower and wash my hair than when I just take a hot shower. Imagination or real?
Thanks for your interest and for sharing your knowledge so generously with all of us.
84 years old in Glendale, CA
I understand that you are the expert on RLS, and thought I would give you some information on my case. I have had RLS for about 9 years and have tried just about every medication available. My case is severe and have had no sleep for weeks at a time. Several months ago, I came up with medication that has allowed me to sleep 5-6 hours a night, which is a luxury..
At about 7 pm, I take a 50 mg Tramadol, a 0.1 mg Clonidine and half Mirapex 0.5 mg. To make it even better, I would repeat the same at 9 pm. During the day, I put two pellets 30C of Zinc under my tongue. This has proven to be the best for my condition. There is however side effects. An extremely dry mouth, and terrible itching, during the night. I am writing you as, you are aware that people with RLS love to share information.
I would greatly appreciate your comments, and if you can give me any advice on how to better this condition.
I have had RLS for as long as I can remember, it is in both my legs, both my arms and most recently my neck. The latest suggestion I have been given by my naturopath is to take magnesium, vitamin c and iron and place a reasonably strong magnet in the centre of my calf on my worst effected leg. Are you familiar with this combination?
I have probably been affected by RLS and PLMD for years but was undiagnosed until about two years ago when I developed sleep apnea (again, I probably had it for years without knowing it). A subsequent sleep study revealed mild apnea associated with periodic limb movements. The RLS and PLMD seem to be somewhat associated with temperature as well it is worse in the summer. This makes sense, since for years, my wife has complained that I am a restless sleeper.
Currently, I am taking a tablet and a half of 0.125 mg Mirapex with 0.5 clonazepam for a little over two years now. I use CPAP (uncomfortable, but it seems to take the edge off the apnea).
Recently I had an MRI and bone scan which revealed stenosis in the L3, L4 area with a little associated arthritic changes (I had been having chronic low-grade lower back pain for years). I take ibuprofen to reduce inflammation and Darvocet nightly to aid in reducing the pain in my lower back. However, I have noticed an increase in my RLS symptoms to the point in which my entire body will suddenly jerk. Also, my thigh muscles seem to have a constant state of tonus as do the muscles of my hip and buttocks. I am assuming this is associated with the stenosis which was described by the specialist as mild to moderate. All in all, it is very difficult for me to get ample rest. For years I have felt "strung out" each day because of the previously described problems.
I am doing physical therapy exercises to strengthen the muscles of my stomach and lower back, which seem to have helped with the chronic low-grade pain during the day, but I am very restless at night and have great difficulty in falling asleep. When I awaken at night (usually to urinate) I do not notice the symptoms as much once I have slept a bit.
Is there something more I can do to alleviate some of these symptoms? It seems the tonus in the muscles is almost more of a problem now than the apnea.
I have had RLS since I was 25. I am now 77 and symptoms have greatly increased over the years. At the present time I am taking 1MG of Requip three times a day. Many times I have to keep busy and on my feet to keep the attacks away until it is time for another pill. This is very hard since I am handicapped and on a walker. I have to get so tired that I simply collapse.
A lot of times the Requip doesn't take effect before 3 or 4 hours. So I have to take another to get through the night. My cancer doctor prescribed Klonopin,.5MG , 1-3 pills, to be taken at night. My question is: Can I take Requip before bedtime and if no relief sets in within 2-3 hours, can I fill in with Klonopin. Or should these two medications not be used together?
I am experiencing periodic spells of dizziness and nausea. Is this caused by the interaction of the two drugs or could it be caused just by the Mirapex? Thank you for the information you make available on your web site.
My family doctor has prescribed Carbidopa/Levodopa 25/100 for my RLS. I have been taking this for about a month. It works! Yesterday, I was in for my three month check with my eye doctor, I have had "normal tension open angle glaucoma for years treated with eye drops to lower the pressure. The doctor found that my eye pressure has gone way up (32 vs. normally 18).
I did not think to inform him of the new medicine I was taking for RLS, which I will do Monday. Do you have any suggestions? Can you refer to me a medication that works for RLS that will not increase my eye pressure?
I am new to your website and it is great!
I also have noticed I twitch in my sleep. This wakes me up. The twitching does not seem to come from just my legs, but other parts of my body as well. The twitching has just started recently.
He recently added Ultram, but this seems to do nothing for me. My back is doing ok on the Percocet, but at bedtime, the legs drive me crazy and give me nightmares when trying to sleep. It is driving me NUTS. Can you give any advice as to what to ask or tell my doctor?
However, in the past 5 years it has gotten more constant and severe and I am forced to be off work because it became too difficult for me to hold down a full time job. It has in the past few years also caused a lot of stress and anxiety due to lack of sleep and inability to function normally.
I have applied for disability through work at urging from others and I am concerned that RLS will not be recognized as some people still tend to think of it as 'all in the head'. What is your experience or info if any on patients with RLS receiving disability. I would appreciate any advice you can pass my way.
Sleepless in Ontario,
Thank you so very much for this wonderful site. I have been using temazepam for sleep and restless legs but really am trying to cut it down. I am taking about 10 mg. a night and since I was starting to have restless legs again I have started taking Ultram with it. Hopefully I will not need that after awhile.
Even at a low dose the Sinemet was starting to make my legs worse earlier in the evening so I cut that out. Is it safe to combine temazepam with the Ultram? My doctor prescribed the two so I assume it is.
Once again thank you for your help,
Linda, San Diego
Hello. I am a 39-year-old female, and have recently realized that I have Restless Legs Syndrome. For several years now, I have woken up multiple times throughout the night, and then have had extreme difficulty getting up in the morning, as I did not feel rested and ready for a new day. However, the Restless Legs Syndrome bothers me more during the day. While working at my desk all day, sitting in church, sitting in a meeting, or anytime that I am sitting in one place for any length of time, I almost go absolutely crazy due my restless legs.
I am wondering if one of the medications I am taking could be the cause of my restless legs. Because I would prefer to eliminate the medication causing the problem rather than to add another medication to my daily regimen. I am currently taking the following medications: (1) Effexor XR – For depression, (2) Zyrtec – For allergies, (3) Flonase Nasal Spray – For allergies, (4) Singulair – For allergies, and (5) Taking allergy shots.
Are any of these medications know to cause Restless Legs Syndrome? If so, would tapering off/stopping the use of the medications (after consultation with my doctor) eliminate the Restless Legs Syndrome?
Twyla H. Medical Reply
I have read your site with great interest and some relief. The stories from your other contributors simultaneously fill me with compassion, interest and insight, excellent information and a feeling of camaraderie in that I am not alone. I have had jittery legs since my early 20's (I am 45 now, crikey, how did that happen!!!).
The occasional stretching at night, massage etc seemed to do the trick and I really never thought of it as anything pathological. However, 2 months ago after a nasty bout of flu caught during a trip to the US, during recovery from the virus my symptoms suddenly got much worse, leading to little sleep and the classic night walking/waking. Bruising my legs by hitting them (I was relieved to know this wasn’t just me, as this behavior appears rather psychotic to non- suffers :>)), stretching, massaging, running in the dark along a canal side at 4 in the morning (thank god there's no one around at that time, although the ducks were a little confused), all led me inexorably toward a desperate and somewhat panicky search for explanations.
I went to my doctor desperately anxious, to be told nothing was wrong and to be prescribed amitriptyline, which made it worse. Then came a search on the net. I quickly found your site and was greatly comforted that an imminent diagnosis of ALS, BSE or other severe and fatal neurological disease was probably not the cause. For that on its own thank you. Interestingly I had taken large amounts of cold remedies containing antihistamine and then, to exacerbate the problem, antihistamine sleep aids as I couldn’t sleep, which somewhat initiated a viscous cycle in the symptoms. In addition, I had taken a course of Losec (a proton pump inhibitor) a week before this, all of which I now find can exacerbate the symptoms. My final confirmation test was to ring my big brother (we were broken up as a family when I was very young, so I don’t know them that well), who informed me that he, and three of my brothers also had symptoms and my mother. Well, this pretty much convinced me of the problem. Interestingly, we also have family hypertension running in the family and I wonder whether disorders in dopamine metabolism might possibly underlie some forms of familial linked hypertension??.
I have started taking iron and have moderated my exercise which was rather intense as I tried to exhaust myself. In the last few days I have experienced a significant drop in the symptoms but am worried about iron supplementation without ferritin monitoring. I am taking 30 mg of amino chelated iron per day before bed. I don’t know if my improvement is a natural remission or due to lifestyle and supplementation with iron. Either way, how do you suggest that I manage iron intake long term, as I am aware that excess iron is problematic in terms of other health risks. It is causing a little constipation and dark stools, but I think that is not too worrying and just excess non-absorbed iron. Any advice would be fab. I really appreciate this site, my heart goes out to those of you that have it much worse than I. Thank you so much for your time.
P.S. I'm trying to delay any dopamine medication for as long as other methods seem to work. I read your comment about chiropractic. Absolutely right, no research in this area. Maybe we should do some, although I think any (non-placebo) neurological rationale for putative effects is tenuous to say the least at the moment.
Most all the medications that you were taking generally worsen RLS except that Losec (Prilosec in the USA) is not known to affect RLS.
I have been looking at your site for a few years and had a question about Permax. First a little history. My RLS was found during a test for sleep apnea, I tried Requip and Mirapex both worked but gave me insomnia. Sinemet was like a miracle until augmentation set in, now they want me on Permax.
My doctor or myself have failed finding any conclusive research linking Permax to hardening of valves in the heart. Is there any new info on this?
I have been diagnosed with RLS but am not sure it is the correct diagnosis as I don’t really have the need to move my legs due to discomfort. I do have the tingling/buzzing feelings that some seem to have and I definitely have problems sleeping. My neurologist who diagnosed me gave me Klonopin (I take ˝ of a 0.5mg pill at night) and I sleep much better with it.
This seemed to start after I
started taking metaclopramide for acid reflux symptoms and it seemed to
cause Parkinson's disease symptoms. Is it possible that RLS could be caused or at least
made worse by metaclopramide? Is it possible that some side effect of my
RLS can cause symptoms similar to acid reflux? I do not have heartburn, I
feel bad most afternoons and taking antacids help. Medical Reply
I am a 66 yr. old male and have had limb onset ALS for five years. I have had a gradual onset of RLS-like symptoms in the last six months. RLS-like symptoms are most prominent in my feet with lesser symptoms also in upper legs and lower torso. Also, toes and balls of feet are often cold. I do not have symptoms in my calves. My calf muscles are severely atrophied due to ALS.
An ALS neurologist has prescribed Paxil (10 mg daily) and I began this medication two days ago. Treatment is for general anxiety, possibly due to lack of sleep and problems of leg discomfort. As of today, my ALS neurologist has prescribed Vicodin for pain and sleep disruption. I have not yet taken this medication. I have not yet discussed RLS with my neurologist as I was not familiar with this syndrome until I read about it today on an ALS message board.
My questions are these:
1. Is RLS known where primary symptoms are in the FEET with secondary symptoms in upper legs and lower torso?
2. Would coldness in toes and soles be associated with RLS or might this be due to some other condition?
3. Do you recommend that I discontinue Paxil until the RLS-like symptoms can be ruled in or ruled out.
4. Would the combination of Paxil and Vicodin be appropriate for an RLS patient?
5. Have you had any experience with ALS and RLS?
Bill Medical Reply
For the last 3 days, I have RLS non-stop. Irresistible urge to move the legs, jumping of legs, feet on their own. Horribly uncomfortable I can't take it. My old neurologist has me on clonazepam at bed which this neurologist kept me on and I also take Baclofen and Keppra for spasticity.
Is there something else that I can take for the RLS? Why didn't the Mirapex work when I was on a high dose? Is the Mirapex what caused the fatigue.
So sorry for the questions, but I can't even sit for 10 minutes and I need to get up and walk. Please help me again.
There are some patients who get augmentation with the dopamine agonists
(Mirapex and Requip) may also get a severe withdrawal response such as you are
experiencing. This response was very common with Sinemet but was easy to take
care of as you could replace it with one of the dopamine agonists and avoid most
of the withdrawal symptoms.
As you clearly should not be taking any dopaminergic drugs we need another plan for you. I would suggest changing Ultram to methadone, 5-10 mg every 8 hours as needed until you are back to normal. At that time you can return to Ultram if possible. Some patients even alternate methadone and Ultram (3-4 days of each drug per week).
You might also consider adding another drug such as Neurontin. It may help both Ultram or methadone so that you can use lower doses of those painkilling drugs. The Neurontin could be started while getting off of Mirapex or after to help get off of methadone (if you feel you want to do that) or lower the dose of your painkillers as noted above.
It may be easier to break the Mirapex .125 mg pills in half and take it for an additional week before stopping the drug completely.
I was reading the medicine section of your
website today and wanted to share some personal information. I have suffered
from RLS most of my life. I am 29 year old, and had severe worsening during my
three pregnancies. I have taken many different meds for my RLS.
I was diagnosed with breast cancer last summer. I had previously read on your sight that most anti-nausea meds make RLS worse. I spoke with my pulmonary doctor and he prescribed Ativan for my nausea. It worked wonders. I took it all throughout my chemo, and never got sick. I did not see it listed under your anti-nausea drug section.
I had to take Benadryl for my CT Scan and while receiving Taxol (chemo) and even now while receiving Herceptin weekly. I take a 10/500 Lortab when they give me the 25mg of Benadryl and it keeps the RLS from starting. I found this to be very interesting and helpful.
I would like to say thank you for having this website. I have found much valuable information on it. I suffer from RLS, PLMD and insomnia. I had over 600 leg movements during my sleep study 1 year ago. I currently take Permax .05x2 and Lunesta (just started that this week). I also take Lortab and Ultram for post-surgery pain. However, I did take Lortab during my pregnancy to treat daytime RLS symptoms.
My 5 year old son also has PLMD. I took him Feb 04 (he was 4 then, turned 5 in Oct.) for a sleep study. He has always had difficulty falling asleep and has suffered from night terrors and sleep walking. He has also had behavioral issues from his sleep deprivation and ADHD like symptoms. He had over 200 leg movements which resulted in sleep disturbances. The doctor has my son on .05 of Permax nightly and the improvement we have seen in him is tremendous. They did try 3 months of iron therapy on him, even though his serum ferritin levels were normal, and there was not improvement.
I've had this all my life. Bothersome when I'm tired or get sleepy like riding in the car as a passenger or in a movie or at night. I went on a diet a while back and they had me take 1/2 teaspoon of lite salt daily -- I found it took care of my jumpy legs.
So now when I have symptoms, I dump 1/2 teaspoon lite salt (which has potassium chloride) in a small glass of water, drink it and in minutes, symptoms gone. I always carry it now and take potassium at night as part of my vitamin regime. Easy, cheap solution. Symptoms much better.
Last week he was admitted to hospital with a suspected heart attack, after performing many tests over a period of days they said his Echocardiogram was showing his heart is beating in an abnormal manner, he passed a treadmill test, which he struggled to do, so the cardiologists feel it is his RLS which is effecting his heart as well!
I would gratefully receive any suggestions for medication which could possibly help him & wonder if you have ever came across some-one else who has been effected in a similar way?
I'm taking Neurontin at the moment. 300 mg 1 hour before bed then 1,200 mg at bedtime. It works some but not enough to allow me to sleep. Is this a low dosage or should I look to a different medication? What others are around?? The only meds that I know of that I haven't tried yet are the pain meds but I fear those too will make me feel tired the next day.
When the Neurontin doesn't work, about 80% of the time sleeping on the couch works to stop the RLS! It's an old couch and not very comfortable but I can sleep there in minutes of laying down. It's away from our 2 small kids so I'm wondering that somehow it psychologically helps me to know that I'm "on my own" and can get rest. But this doesn't make sense since my kids both sleep well at night and probably won't wake up, not to mention that RLS is a chemical disorder, not a psychological one. Strange stuff! My wife misses me!
My neurologist is very good and in the RLS Foundation's directory but she isn't sure what else to do if the Neurontin doesn't work out. Thanks so much for any assistance.
Fort Worth, TX
The Neurontin dose is getting up there and higher doses may help but the benefit may be marginal and side effects become more likely at those higher doses.
A Reply from Craig P.
Maybe the pain killers I was on before was too strong. My neurologist isn't big on pain killers but maybe I can talk her into it.
Could this have any thing to do with it? I had surgery on my lumbar spine about 15 years ago. I am about to go insane with this, I have to get up sometimes and sit on the couch during the middle of the night and can not be still. I ask my neurosurgeon about it but he did not know what to make of it. Any advice would greatly be appreciated.
Thank you very much,
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