Hydrocodone for RLS treatment??

[Guest]

Hi there,

I am new to this board and am so glad there are other people who understand this very frustrating condition. I've known that I"ve had RLS for about 3 years now. It has gotten progressively worse over that period of time.

I am on antidepressants for PMS and I understand that this class of drugs makes the condition worse. I am being treated with a narcotic for RLS/PLMD(Periodic Limb Movement Disorder) and it is working very well. I do take however, quite a large amt. but a dosage still withing the realm of treatment for RLS.

Is there anyone else being treated with narcotics? I am afraid to take any other drug as the side effects are supposed to be horrible. ( ie: hallucinations, falling asleep during the day etc....)

Hydrocodone is working very well for me and it takes my symptoms completely away until it wears off which has been earlier and earlier. I take 2 tabs during the day and then 2 tabs at night. I awaken anywhere between 4-6am because my legs are bothering me so much. I then take a 1/2 a tab to go back to sleep.

CAN ANYONE TELL ME IF THEY ARE BEING TREATED WITH A NARCTOC AND HOW MUCH THEY ARE TAKING? ALSO, CAN YOU TELL ME IF YOU'VE HAD TO TAKE MORE OF THE NARCOTIC OVER TIME TO ALEVIATE THE SYMPTOMS?

I'm going to see a nuerologist in a month or so as my family doctor does not feel comfortable treating this condition.

Thanks so much.

[sardsy75]

Hi there,

I am new to this board and am so glad there are other people who understand this very frustrating condition. I've known that I"ve had RLS for about 3 years now. It has gotten progressively worse over that period of time.

I am on antidepressants for PMS and I understand that this class of drugs makes the condition worse. I am being treated with a narcotic for RLS/PLMD(Periodic Limb Movement Disorder) and it is working very well. I do take however, quite a large amt. but a dosage still withing the realm of treatment for RLS.

Is there anyone else being treated with narcotics? I am afraid to take any other drug as the side effects are supposed to be horrible. ( ie: hallucinations, falling asleep during the day etc....)

Hydrocodone is working very well for me and it takes my symptoms completely away until it wears off which has been earlier and earlier. I take 2 tabs during the day and then 2 tabs at night. I awaken anywhere between 4-6am because my legs are bothering me so much. I then take a 1/2 a tab to go back to sleep.

CAN ANYONE TELL ME IF THEY ARE BEING TREATED WITH A NARCTOC AND HOW MUCH THEY ARE TAKING? ALSO, CAN YOU TELL ME IF YOU'VE HAD TO TAKE MORE OF THE NARCOTIC OVER TIME TO ALEVIATE THE SYMPTOMS?

I'm going to see a nuerologist in a month or so as my family doctor does not feel comfortable treating this condition.

Thanks so much.

Hiya

Below are some links to some excellent RLS sites, including medications & treatments:

General RLS Sites:
http://www.wemove.org/rls.html
http://www.jmjudson.com/rls.html
http://www.rlshelp.org
http://www.sleepnet.com/disorder.htm
http://www.rls.org

RLS Medication/Treatment Sites:
http://www.jmjudson.com/medications.html
http://www.rlshelp.org/rlsrx.htm

Fighting RLS Without Drugs:
http://www.rlsrebel.com

You might find it helpful to print out any information you think is important and put it together in a folder; and take it with you to your Neurologist appointment, and even next time you see your GP.

Treatment-wise, you will find that you are your own "guinea pig" as no two people with RLS are the same and everyone is taking a different "cocktail". Patience is the key to finding the right combination. It's the same with side effects. Some people will experience no side effects, others will cop the lot. It depends on your own system. With my main drug, i've copped a complete loss of appetite and have to force myself to eat every day - sounds great really, but it's not.

Not all antidepressants make RLS worse. I'm currently using a tricyclic anti-depressant (Sinequan) to help me sleep. Fortunately i'm one of the lucky ones whose RLS did not react to the drug. Everyone is different.

I unfortunatly cannot offer any advice about narcotic treatment. I'm currently using Cabaser (cabergoline) and tetering on the edge of having to increase my dose again. However, if I do that, then I do more damage to my lungs (I already have a bad cough).

Hope this helps you out

Take care
Nadia

[kanne]

I too use vicodin to relieve my symptoms for RLS. I take anywhere from 4 to 8 in a 24 hour period. RLS has been affecting me for the last 5 years. I have tried every medication that has been suggested for RLS and ES vicodin is the only one that offers me any relief. Every time I see a new MD I have to hear about the dangers of becoming addicted to the vicodin. I am told this by the same MDs who tell me I am the first person they have ever treated for RLS. What does this tell you? I have an appointment today with a new MD and I am going to this appointment with as much information that I could find on this awful syndrome I live with on a nightly(and sometimes daily basis). Many doctors will tell you that narcotics are not the conventional way of treating RLS but these same doctors no nothing about RLS. You are not alone.

[Bob Bradford]

Hi. I too have used Vicodin for RLS. My first experience with using a narcotic painkiller was about 35 years ago when I was in the ER one night with an injured ankle/leg. The ER doctor told me that the shot of Demerol he was giving would knock out that "nocturnal myoclonus." Next day, my doctor called it Ekbom syndrome or "RLS" Since that time I have mostly used a Tylenol 3 tablet, or Vicodin when it gets bad. For me, one tablet before bed works great.

Last week I did have a strange experience with the Vicodin (or hydrocodone) two consecutive nights. Both Monday and Tuesday I had taken the tablet and went to sleep just fine. Around midnight on both nights I woke up kicking, but I was NOT experiencing any of the RLS sensations, nor even the premonition that I was about to kick. I was kicking about every 30-45 seconds, and it was really strange to kick like that so suddenly with no premonition whatever. I figure the Vicodin had deadened the sensation enough to prevent that, but had not stopped the PLMD.

This is the only side effect or "failure" I have ever experienced with the Vicodin, which I only take after a Tylenol 3 has failed to stop the problem.

[jumpyowl]

Sorry, you provided no handle!

I am new here, but I immediately have a query/suggestion. Yes I also used Hydrocodone when I did not know what was wrong with me. But now that you know, you should try something else such as:

1. A nonergotamine dopamine agonist (e.g. pramipexole)

or

2. an anticonvulsant such as gabapentin before you graduate to opioids which should be a second line of defense.

Of course you must find a doctor who at least read the Medical Bulletin of the RLF which is one of the best written I have ever read.

You are facing the arduous process of weaning yourself off of hydrocodone. But it can be done! And it will be easier once the cause of insomnia is medicated by #1 or #2.

Let us know how you are doing!

JumpyOwl

[Guest]

I appreciate your input about the vicodin. I have been suffering from RLS for 5 years now and over these 5 years have tried 14 different medications prescibed to me. I have had many sleepless nights due to experimenting with different medications. A year ago I started taking vicodin and rarely have a bad night. I understand your concern regarding the vicodin but only take it to alleviate my RLS. I am glad you have found something that works for you and I hope you do not get to the point of needing a narcotic to sleep. I support all medications as long as they work.

[Guest]

It is a bit weird for me that I cannot direct my reply to anyone in particular but in this case they will know who they are and there is more than one .

I hope I can do some of my share to penetrate the confusion, mine in particular. I just have this irresistible urge to share these flashes of insights imperfect as they may be.

Any good doctor with a treatment is trying to get to the root of the problem. If this approach does not succeed or the root is not known with certainty then comes the symptomatic treatment which is nothing to sneeze at.

This is why I was fascinated by the revelation then dopamine agonists are supposed to work well for RLS, they all aim at the increase the level of the available synaptic dopamine, especially the nonergotamine types parimipexole (Mirapex) and ropinirole (Requip). ( I have not tried these yet but I did try some anticonvulsive agents and they did seem to work.)

To be sure the opioids also help and reverse both the subjective as well as the objective features. So we cannot even demote this type treatment to be symptomatic treatment status (mostly because the pathophysiology of RLS is not well understood).

However, it is interesting that in experiments:

Preadministration of dopamine antagonist blocked the beneficial effect of narcotic (and naturally the the dopamine agonist, too), but the preadministration of an opioid antagonist did not reduce the efficacy of a dopaminergic agent. So if someone taking both medications (dopamine agonist and opioid), the sequence and timing of taking the two drugs are very important!
So "I have tried everything" may well be true. It may also be also true in many cases that opioids prove to be better in the long run.

It is a pity that morphine sulfate has such a bad reputation even among medical personnel in this country. When taken as an extended release for a clear-cut medical need, (RLS comes to mind), it usually does not give a "buzz" except the partial release of pain, the on-set is fairly rapid and last many hours. Side effects are usually minor.

Codein derivatives, unfortunately (especially hydrocodone) are combined with acetyl-aminophen (at high ratios) which when taken in large quantities and prolonged periods of time are bad for some organs (kidney and liver). And it also takes some time to convert to morphin (up tp 50 minutes) which will be the active ingredient

Same is true for Tylenol PM taken for sleep. The active ingredient for sleep is antihistamine which side effect is drowsiness. Why then take the large amount of acetaminophen compounded with it. Just take the antihistamin as in Bendaryl.

Well, unto my quest for a well-read co-operative doc! First I have to pass the hurdle of my gate keeper and internist with a Ph.D in Pharmacology. However, he shies away from tranquilizers, sleeping draughts, not mentioning opioids and he is the one who sent me with my knee pain to an orthopedic surgeon. I do not yet know his take on RLS yet.

But let you know.

Now to the pillow ball.

JumpyOwl

[jumpyowl]

I am on antidepressants for PMS and I understand that this class of drugs makes the condition worse. I am being treated with a narcotic for RLS/PLMD(Periodic Limb Movement Disorder) and it is working very well. I do take however, quite a large amt. but a dosage still withing the realm of treatment for RLS.

Is there anyone else being treated with narcotics? I am afraid to take any other drug as the side effects are supposed to be horrible. ( ie: hallucinations, falling asleep during the day etc....)

Hydrocodone is working very well for me and it takes my symptoms completely away until it wears off which has been earlier and earlier. I take 2 tabs during the day and then 2 tabs at night. I awaken anywhere between 4-6am because my legs are bothering me so much. I then take a 1/2 a tab to go back to sleep.

Well, I am back. Finally, I went to see my family doctor who was somewhat familiar with RLS. When I mentioned that hydrocodone helps (it even helped when I was unaware I had RLS) that is what he described for me at 5mg/500mg strength. That does not quite do it for me but he was adamant.

To give hydrocodone a fair chance I stopped taking a low dose anticonvulsive (topamirate) I was experimenting with for 10 days prior to the visit. Where my results so far:

Hydrocodone works especially if I take it before the tingling, maddening sensations start. And it maskes the pain. It masks it to a certain degree but I still wake up with stiff muscles in the legs mostly.

The anticonvulsant also works with no side effects noticeable. It works even better with some hydrocodone.

I also notice (perhaps I am more observant or RLS is getting more severe) that I may start to get the sympoms earlier. Especially if I need to take a nap in the afternoon, it is sheer torture (and get up feeling worse) unless it is preceded with hydrocodone.

To anonymus who started this thread, as I understand now, there is at least one anti-depressant which does not aggravate RLS. If you have to stay on one I hope that is the one you are taking.

Sleep well!

JumpyOwl

[miamoss]

I am 32 years old and suffered from RLS all of my life. This disorder is so bad that suicide has crossed my mind many, many times. But one day I started taking a drug for another condition and I noticed that my RLS completely went away. The drug is called Neurontin, it is used for many things, but mainly epilepsy (which i do not have). For me, Neurontin has NO SIDE EFFECTS WHATSOEVER, it is great. What a relief. I just take 3 around dinner time (before the onsite of the RLS) and then I sleep fine, and I can watch tV now and go to the movies and fly on airplanes. Wow, I am so happy that "by chance" I found permanent relief from RLS. Now, I am no doctor, but my doctor was happy that we discovered this and supports it all the way. Please talk to your doctors and try it, I promise it works. Some may need to take more Neurontin or less, I take 300ml a day. Most important though, you should not wait until the RLS is starting to kick in before taking Neurontin, take it before the onset, if you wait too long, it will take twice as long to work. So I just take it early, before dark, that way I am covered, and I never even feel the RLS anymore, ever.
I hope this helps. Now I can live.
Maria Moss

[miamoss]

Please know that Anti-Depressants are great great drugs, I've used them before. However, they all made my RLS so bad that I wanted to commit suicide. In order for anyone to be able to remain on the anti-depressants, I would suggest talking to your doctor about taking neurontin with the anti-depressants. And most important, take the anti-dep early in the morning as possible and the Neurontin before it gets dark out, preferable 5-6 pm a few hours before your bedtime. I think you will notice a HUGE difference in your life. When you take Neurontin with the anti-dep, it allows you to be on the anti-dep but not suffer from the effects of the rls that it gives you. It worked for me.

[jumpyowl]

or Vicodin.

Now that I have more personal experience as opposed to lexical knowledge I would like to share them with you.

My family doctor believes, based on experience with one patient, that hydrocodone helps. So he prescribed it for me. Since I am large (230 lbs) of some medications I require a larger dose. He gave me the pill 5mg/500mg taken once before retiring. This is about one half of the dose that affects me beneficially.

It does help me sleep but does not stop paresthesias in the leg (unless I fall asleep before they come), I have RLS with pain so it dulls the pain and that also helps. However, if I do not take hydrocodone, paresthesias are worse.

I just had a sleep test and they found numerous examples of nocturnal myoclonus (NM) that disturb sleep. The technician distinguished between RLS and NM (just came back from a continuing education course). he said RLS happens when you are awake, NM happens when you are asleep.

When I started taking hydrocodone (two weeks ago), almost immediately after swallowing the pill) I had palpitations. These lasted a good 15-20 minutes. If I took a low dose of propranolol (beta blocker) they diminished. I assumed they were from hydrocodone. Anyone out there had the same experience?

Then I had two cardiac episodes that started me thinking: after my second visit to the doctor (later that day) and three days later, before I went to the sleep lab, I had one episode on each day of persistent tachicardia.

The first one started at pulse 124 1/min and gradually increased to 134 1/sec. The blood pressure at first remained normal then after hour increased to 160/110. It did not respond to beta blocker, even though I took a triple dose. I called emergency and they wanted me to come in. I told them that I will try one more thing and if that does not help, I am coming to the emergency.

I took some tranquilizers (Ativan) and the vital signs stabilized. The pulse suddenly dropped almost to half and soon after the blood pressure became 110/67. So I did not go to the emergency.

The second one started at pulse 134. Propranolol brought it down to 124. Blood pressure remained normal. Eventually again I took a benzodiazapine that brought it down. The night following this was my sleep test. My heart beat rate was normal during the night although the beats doubled up a few times. However, this could have been the after-effect of the bezodiazapine which was a long-acting one.

The more I think about this the less I believe that this arrythmia is due to hydrocodone I take regularly or the anticonvulsant I take occasionally.

Still I would welcome any comment, then back to the doctor I go!

[dogeyed]

JumpyOwl, yes, I took hydrocodone about ten years ago from dental work and my heart beat so fast that I thought I was going to collapse. Very frightening experience. I have never taken it since. Yet, I can take codeine with no problem. So, evidently the hydrocodone does have that effect on some people. I personally think you should never take it again.

Missmiss, thank you for telling us about neurontin. I made a new post at this website earlier this morning, giving my symptoms. I am thinking my aching legs comes from a neurological problem. That you say neurontin works seems to agree with that.

Others: I have put a "Badger's" muscle salve on my calves when they contract, and it provides relief. But of course the real problem is still there.

[RestlessTex]

I was on Hydrocodone following neck surgery in 2003 and back surgery in 2004. The dosage ranged from two @ 5/500 to two @ 15/500 4-6 times a day. It was clear to my fiancé that while on Hydrocodone I had no "running in my sleep" episodes. Since being off the meds for months the symptoms have resumed... every night. The evening symptoms persist, too: fidgety, restless legs when sitting.

[RestlessTex]

I was on Hydrocodone following neck surgery in 2003 and back surgery in 2004. The dosage ranged from two @ 5/500 to two @ 15/500 4-6 times a day. It was clear to my fiancé that while on Hydrocodone I had no "running in my sleep" episodes. Since being off the meds for months the symptoms have resumed... every night. The evening symptoms persist, too: fidgety, restless legs when sitting.

[ksxroads]

Dear Tex, Opiods are among those medications used to treat RLS listed in the Mayo Clinic Algorithm. Some of us who have been able to continue the DAs or other medications due to side affects find a low dose of an opiod has been affective in controling our RLS sensations and discomfort. Be sure to read the new to RLS section, in particular pay attention to those medications which are know to increase RLS problems.

Take care, Hazel