Patient letters on RLS symptoms and remedies- Page 53

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

I have been suffering from RLS for about 15 years. I have been on a variety of medications. Neurontin and Klonopin got me through the last two years. By January of this year, they stopped working. I have tried Mirapex and Requip with no luck. They exacerbated the symptoms. I went to the Cleveland Clinic last week to have an evaluation of my medications (I'm on a lot of others for other medical problems). I'm seeing my neurologist this week.

Can RLS just subside on it's own after having had it 24/7 for the past few months? I may be talking too early, but I've slept the past two nights, about 10 hours each night. I can't believe it. I don't have the RLS during the daytime hours either. Right now, I'm only on Klonopin, .5 mg, 3 times daily.

What are your thoughts about sudden changes??
Sheryl

A Medical Reply

I had trouble taking Mirapex and Requip because of sleep loss.   Also, they irritated my stomach and urinary tract.  I was often up at night and couldn't sleep.  Taking a Percocet helped a little but I never really felt like myself and was often tired during the day.  After three years of this I tried Neurontin and Ultram. 

The Neurontin works much better. I feel ten years younger.  I actually sleep uninterrupted  for 6 hrs  at night and feel rested during the day. I am taking 1200 mg in the evening.  Is it okay to take it all at once?  I took 300 mg in the am yesterday and felt a little sleepy.  I drive for a living so this is not good.  Also,  I was taking just one Percocet per day and it was sometimes giving me a headache.  Now I have no problems with this. 

But I am worried about taking two types of pain meds together. I don't abuse drugs so is this a problem?   They seem to work well  with each other  in a limited dosage.  One other thing, your Treatment Page says Neurontin often loses effectiveness after a year or two.  In these cases will this drug regain it's effectiveness if the patient stops using it for a period of time?  If so, how long a period might this be?  If not, I am going to be quite sad (if it stops working) since I feel pretty good again after almost three years. 

I sometimes think I would rather have a heart attack and fly away than go back to  the   Parkinson medication. I  was always tired when I was taking them.  And what do you get when you are sleepy during the day?   More RLS!!     

David.

A Medical Reply

Two years ago I tried acupuncture and I was was completely cured for a year.  Restless legs occurred and  I  had another acupuncture treatment.  It was successful.  Then it came back again and I had acupuncture for the 3rd time.  On that occasion it didn't work.  I had two good years and I recommend this treatment.  

Mike G.

A Medical Reply

I have PLMS but no symptoms of RLS.  I am currently on Neurontin 800 mg and Klonopin 2 mg.  I recently noted that your site had strong recommendations against using  Benadryl and wonder why this is so, other that it being a antihistamine.  Are the recommendations against Benadryl just for RLS or do they apply to PLMS also.  I was taking Benadryl routinely before I saw the alert card on your site and it did not seem to make my condition worse (as far as I can tell since my bed partner is usually out of town).  It comes in handy when taking my nap each day.

I did notice that some peripheral neuropathy I was experiencing in the soles of my feet went away for several weeks after not taking Benadryl.  But then it returned.  PLMS is usually idiopathic but sometimes presents with peripheral neuropathy.

I do have allergies and work around a lot of poison ivy in the yard so would like some type of antihistamine that also promotes sleep.

Any advice would be appreciated,
Steve in St. Louis

A Medical Reply

I am having very, very severe problems with RLS. I am by nature an alert, intelligent, gregarious person whose life is nevertheless being destroyed by this condition. For me to go 36, 40, 48 hours without sleep is not unusual. My bodily health of course suffers drastically. The inside of my mouth often feels like a disgusting sewer, I imagine from the buildup of the toxins in my body. I become very jumpy, unable to tolerate the company of other people since I feel so much frustration.

It is not melodramatic to say that nights are hell where I sometimes feel like pounding my legs. Sometimes I'll take seven or eight showers a night just for the very temporary relief they offer. I am at my wit's end completely. In the past, I was diagnosed for everything from schizophrenia to depression to anxiety orders - you name it. But a few months ago - after having an accident where I fell down some steps - a friend of mine gave me a dose of hydrocodone. I had never experienced anything more amazing in my life. The restlessness in the legs disappeared, and with it also disappeared the anxiety, depression, irritability - all the general misery I've experienced all my life.

The conclusion now is very, very clear: there is one problem, and one only, from which the rest of the problems derive. When the RLS is eliminated, the level of my efficiency, the height of my mood, the strength of my concentration, my natural gregariousness all comes out - ME, in other words! My doctor has tried various medications, none of which have worked with the exception of one - and that is the hydrocodone. I obviously have a fairly severe case of RLS - and as extreme circumstances demand extreme measures, so the dosage I need of the hydrocodone is what would not usually be called for. I am talking 30 mg. in the evening, before sleeping; very, very occasionally a second 30mg. dose in the middle of the night if the symptoms awaken me and do not allow me to go back to sleep becomes necessary.

Let me emphasize: I am NOT interested in getting "high." I do NOT get any kind of emotional or body high from the hydrocodone; the ONLY thing I get is my sanity back and my life back. I am, however, finding my doctor very frustrating. I think he has very little idea of the seriousness of this condition.

He is a good, caring guy - I would even say, to some extent, a friend -  and I truly believe that if he realized how extreme the situation is, he would adopt measures adequate to handle it. He has done blood tests on me - even after the large doses of hydrocodone I administered myself, (which, by the way, I acquired by less than orthodox means), and found no deleterious effects. He has tried many things, but only ONE thing works - the hydrocodone. I am at my wits end. I don't know what to do.

I believe my doctor is too cautious - timid even - and I don't know what to do. I, for one, have the essential equivalent of a PhD....but am absolutely unable to use it due to all the blind alleys I am encountering at every step of the way.

Help! Suggestions! ANYTHING YOU HAVE TO OFFER WILL BE APPRECIATED!
Dan

A Medical Reply  

I have had RLS since I was a child.  About 4 months ago I had surgery on my knee (cleanout scar tissue and check for infection from previous surgery 2 years ago).  I went back into the hospital a week after this surgery with staph infection.  (Like I did with the surgery/infection two years ago)  They found 2 infections: one was smoldering from the surgery 2 years ago and a new one from present surgery.  They put in a port in my chest and gave me antibiotic infusions for 6 weeks.  

Now, what I am getting at is I not only have RLS, but severe pain with it just in my left leg, the one with the surgeries.  My orthopedic doctor says to stand with my legs way back behind me and lean against a counter and that always gets rid of RLS.  It doesn't me. I took Ultram for kidney stones and discovered it helped with the RLS and pain.  I can't believe how I slept so much after taking Ultram and, of course, no pain in my legs and hips.  

I am wondering if the surgery/trauma may have caused the RLS and pain to get much worse now?  When I was in the hospital and awhile after I was out the doctor prescribed  Narco (hydrocodone) and that helped also.  But that was strictly for pain.

Thank you for your internet site.  It was very informative.

Sincerely,
Violet

A Medical Reply

I am a 43 year old male who has suffered with RLS for longer than I care to admit.  Until I did a web search, and found out about RLS, I thought I was alone in my suffering.  I never knew that it was as common as it is.     Because of the help I found on the web, I feel the need to share a recent dramatic development in my life.

I was recently diagnosed with ADD. (Adult Attention-Deficit Disorder)  And was prescribed the drug "Strattera."  (Let me state for the record that I am the first person to argue against a "magic" pill to solve one's problems.)  However, the changes in my life since starting drug regimen have been surprisingly dramatic.  My spouse feels as if, after eight years, I am finally "getting my act together."

The reason I am writing, is an odd side effect.  Since being on Strattera I have only had one night where I had a bout of RLS.  I don't know if it is a positive side effect of the drug, or if RLS is a symptom of ADD.  All I do know is that if this information can help someone out there get a good nights sleep... then this e-mail is worth sending.

I am attaching a link to an on line ADD test that I found called the General Adult ADD Symptom Checklist.   For your own benefit, take the test.  You might be surprised to find out that your RLS is not the problem... but a symptom.

Shawn C.

A Medical Reply

I began taking 5 mg of Ambien at bedtime about 4 years ago to combat the insomnia brought on by Mirapex (.25 mg).  It's worked perfectly but I'm not crazy about doing this.  I have tried several times to get off the Ambien but usually go two nights with almost zero sleep (I just never get sleepy) and finally fall into a sort of exhausted, coma-like sleep on the third night, only to repeat the process.  It's usually at this point I give up.  

Any suggestions would be appreciated.  (I can't recall getting addicted to anything else. . . . . .but this seems like addiction to me.) 

Pat L.

A Medical Reply

I've had problems with RLS for several years.  It seemed to begin in relation to a fall that injured my feet and cracked my left calcanus.  I also developed a bone spur on my right heel.  That was 7 years ago and I have had varying amounts of foot pain and RLS ever since.  When my feet are bothering me the RLS is worse.  This has kept me wondering whether this might be a nerve injury problem.  Just standing (especially on a hard surface) is the worst but doing a lot of walking, while not necessarily bothersome at the time, usually has consequences later.

My RLS mostly affects me in the evenings when I'm sitting and winding down from the day.  When I lie down, it seems to resolve in a fairly short period of time so I have been fortunate in that it doesn't seem to disturb my sleep although I am tired much of the time. Over the past two weeks or so it has become pretty much unbearable. 

My feet are also hurting more than they have in quite some time and I often have the "pins and needles" tingling feeling.  I'm now having trouble during most of the day (starting around 9-10 am) if I sit still for more than just a short time.  It has also begun affecting my arms and shoulders. 

I have a tendency to tense up and walk around with my fists clenched.  At times I am so sensitive that my arm rubbing on the desk or a crease in my sock can drive me up the wall. I've addressed the issue with my doctor.  We're doing blood tests for possible iron deficiency, etc. and he has put me on Mirapex (0.125mg 3 times per day).  I've been taking this for approx. a week and am not sure how much it is helping as the RLS seems to be better one day and then worse the next.   The Mirapex does seem to give me problems with insomnia if I take it later than 6 pm so I've cut back to just a morning and late-afternoon dose.

Are there other issues that we should be looking at as a cause or contributing factor for this?  I'm anticipating that my doctor will want to increase my dosage of Mirapex but am a little leery of that since I'm already seeing some side effects.  Thanks for any insight or help that you can provide.

Janet S.,
48 years old,  Idaho

A Medical Reply

Please forgive me if I do not express myself well.  As I write this, I am doing what may be equivalent to every ballet and gymnastic move there is because my legs are driving me insane!

I have been medically treated for RLS for the past 15 years or so and look back "longingly" at the times when I would be symptom free for months at a time.  And when RLS did rear it's ugly head, ONE Sinemet stopped the symptoms within minutes.  I now remember those times and actually cry.

Although I'd been plagued with these horrific symptoms since I was 13, I didn't began  medical treatment until after the birth of my son.  As I said the order for Sinemet was "PRN" and I never experienced side effects from it.

I have had RLS for many of my 53 years (it was recently confirmed by a sleep study). Many of my family members suffer from it also. I found Vicodin helps control the aching feeling that keeps me awake but it is a narcotic and I have noticed some tolerance over the years. My GP has had me try Quinine, Sinemet, and one or two others but they don't seem to control the aching. I tried Ambien and slept but had some sleepwalking issues.

Over the past 3 to 5 years I have developed excessive daytime dozing. It can happen while I am driving or while I am sitting at my desk grading papers ( I am a teacher) which is a concern. I feel this is due to the fact I am not getting to sleep until 2 am and then have to get up at 7. I'm not getting any REM sleep.

I understand from  reading some of the letters that Mirapex works for RLS but may cause insomnia. I don't need more not sleeping problems.

I would like to get away from the narcotic Vicodin. What regiment would you recommend? Mirapex with Ultram for the aching?

Is there a way to reset a person's biological clock? I can sleep fine as long as it's from 2 to 10. RLS doesn't seem to bother me then.

Any advice you can provide would be greatly appreciated.

Sincerely,
John S
Salinas, CA

A Medical Reply
 

I am a 61-year-old woman.  I have had RLS for 6 years now.  It has progressed quickly and become a lot worse in that time.  I have been to many doctors for this, but am not getting any help now, so I am hoping you might have an idea what I might do next.  I am getting pretty desperate about this.

I have always had insomnia and depression, which I took antidepressants for, then had to stop because of the RLS, so that adds to my problem.  I now take Neurontin for the RLS, 2500 mg daily.  100 mg in the morning, 300 mg after dinner and 2100 before bed.  I have had to increase that, especially in the last several months.  I started out with only 400 mg. daily.  Every time I increase it, it only lasts for 1 to 3 nights, then I have to increase again.  I feel that now I am taking a lot. 

In fact, I just recently discovered that the pain I have had in my mouth (a burning on the roof) is caused by the Neurontin, since I recently stopped it for 2 days, and the pain went away!  I was astounded!  But I have gone back on it because otherwise I would be awake all night with my legs jerking, and I can hardly stand the thought of that.  I have also taken Vicodin and Percocet for years for this when the Neurontin wasn't enough, which would be about every other night.  But the Percocet makes me very depressed and tired the next day, and the Vicodin started making me hyper and not able to sleep as much or as well.

I have tried Mirapex and Requip, which were like a shot of Adrenaline to me.  I have also taken Permax at times, a low dose, but even that usually keeps me awake and makes me very irritable the next day, even if it doesn't keep me awake.  Now the doctor wants to put me on Sinemet, which I feel would do the same thing to me.  I have also heard bad things about it, that it causes the symptoms to become worse after a while.  Yet, it seems like that is the thing all the doctors recommend first.

I have also tried other anti-seizures:  Depakote, which made me tired during the day.  Trileptal, which made me sick, and Topamax, which made me so zombified, I stared at the wall all day!  I also tried Klonopin, which helped my legs, but made me cry all the time.  It was terrible!  I now take Xanax for sleep and it helps, but I know I am addicted, as I can't sleep without it.

Do you have any other ideas for me?  I don't know what it would be, unless there would be some combination of things.  Some nights, I would have to take, besides the Neurontin and Xanax, Vicodin AND Permax to make it stop. 

I would appreciate any help you can give me.  Thank you very much.

Irene O.

A Medical Reply
 

I e-mailed you a couple of times a few weeks ago in regard to treatment of RLS. I have a question, now, that I've not been able to find the answer to through the internet: at any particular dosage of Mirapex, how long does it take before one knows if that dosage is going to be effective? At .125 mg and .25 mg, there was no discernible effect. Now I've been at .5 mg for 14 days, and still there's no discernible effect.

My doctor thinks I should keep taking .5 mg for awhile, but certain info I came across on the internet leads me - rightly or wrongly - to infer that I should know, (by now, at 14 days), what .5 mg is going to do. Can you clarify this matter for me? Second question: an oscillating rhythm/dance between Tramadol and Hydrocodone does DEFINITELY control the RLS in EXQUISITE fashion - I sleep peacefully, wake refreshed, with depression gone, etc, etc.

But trying to get my doctor to prescribe Hydrocodone, (and to prescribe it in a sufficient dose - 10 mg is what's really needed, and he won't do more than 5 mg), is like pulling teeth. The oscillation of the two medications of course leaves them both effective and allows for the avoidance of addiction, (which, having already experienced - if you remember from prior e-mails - I do not want to experience again).

But I am having a very difficult time with my doctor. It's as if he's phobic about this - and he's this way with all patients along this line, not just with me. He says there are "other medications" we can try - to alternate with the Tramadol, (which I DID begin developing tolerance to, so I need to alternate). But my doctor hedges, and won't specify what these "other medications" are, (Klonopin was tried some time ago, and rebound was an immediate problem, so we dumped that; Neurontin worsened the RLS radically, also...so his "other medications" can't be those).

What could his "other medications" be?  Any ideas? Truth is, I'm becoming impatient with the doctor I'm seeing for this, since it seems clear to me, now, that opioids are effective and quite safe when properly used, and I feel like he's being basically stubborn and not quite fully rational. I may have to seek another doctor - but right now, this depends somewhat on the answer to the mystery of my doctor's "other medications."  Could he really have something both possible and good in mind?...or is he simply looking for ways to avoid prescribing narcotics, no matter how carefully crafted the treatment plan is? (Your reflections on this matter could help me figure this out, so I could know if I need to more seriously contemplate finding another doctor).

Thank you!
Dan H.

A Medical Reply