Treatment of RLS with Gabapentin (Neurontin)

[VVV]

A search of the forum shows many posts about medications for Restless Leg Syndrome and here goes another one.

Last fall my GP prescribed one of the newer, patented drugs and it caused bad insomnia.

After three weeks, I went to my sleep doc. We had a long discussion about different drugs and he ended up prescribing .25 mg clonazapam (Klonopin) nightly. This was a help and got me 3 to 5 hours of sleep.

The doc then upped the dosage to .5 mg clonazepam nightly. This gives me (most nights) 5 hours of sleep. Then I awaken with uncomfortable legs (RLS) and some leg pain. I may be able to fall back to sleep and I may not. Bottom line I am not consistently getting the 7 to 7.5 hours of sleep that I need to feel energetic.

I will see the doc again soon and want to have a discussion with him about 1)increasing the clonazepam dosage or 2)keeping it the same and adding a pain medication.

What do you think?

Thanks,

[ameriken]

When you say 'adding a pain medication', which kind are you suggesting? Depending on which one, that alone can cause added breathing problems.

[VVV]

When you say 'adding a pain medication', which kind are you suggesting?

I am not suggesting one, I am asking for suggestions.

The only experience I have with prescription pain meds is when I had foot surgery. They gave me one of the common mixtures of acetaminophen and an opiate (maybe Percocet - don't remember). I used a couple of doses the first 24 hours after surgery. Side effect was constipation. I am not the type of guy that appreciates that side effect so I probably should stay away from opiate derivatives unless there are some that don't have that side effect.

Depending on which one, that alone can cause added breathing problems.

I am not worried about the breathing as I track my CPAP performance very carefully and would make quick adjustments if needed. If anything serious came up, I would discontinue the drug.

Thanks,

[kteague]

Been down the road and back again wth RLS and Periodic Limb Movement Disorder. Has your doctor already evaluated your nutritional health, particularly magnesium and vitamin D, and done iron studies? And you're not on any meds that are known to cause problems with the legs?

I was given Tramadol and told it might help my legs at night, then saw another doctor who said some patients find Tramadol to worsen their RLS. What's a lady to do?! But in my case, I started bolstering my body by taking taking vitamins and supplements, and using a TENS Unit to relieve my legs at night. I have found I am better tuned in to how my legs feel in the evening and at times can even successfully sleep without using the TENS. Most other times - no way!

If you are concerned about taking pain pills, maybe the TENS Unit is an option for you. Most doctors are not at all familiar with this use of the device, but my sleep doctor was very interested after my last sleep study confirmed how much my limb movements had improved from prior studies both nonmedicated and on various meds. It's been almost a year now, and I can't say enough for how much this approach has helped my sleep. Best wishes with yours.

[Jay Aitchsee]

VVV, I've done quite a bit of research on the subject of meds, pain, and deep sleep. I've taken several of the meds commonly prescribed for RLS/PLMD. In my research, I've found very few drugs that are known to promote deep sleep. If you google "drugs that promote deep sleep" you'll find some results. While many of these drugs offer sedation, they do not promote and some hinder deep sleep. So even though using them allows you to "sleep", you do not get restorative sleep. In my opinion, clonazepam, and other benzo's are in this category. Some of the newer gabapentins and derivatives, nuerotin, horizant, etc are approved for pain/RLS and are not thought to inhibit deep sleep. However, I have taken most without good results.
For pain, NSAIDs and Tylenol are possibilities. However, both carry high risks. Narcotics and opiates are also worth considering, though many formulae include acetaminophen.
One of the most benign sleep aids I have found is ambien in small doses, less than 10 mg.
I agree with kt, the first thing you should consider is a full blood work up: Vit D, magnesium, iron, anemia, B12, folic acid, kidney and thyroid functions, just to rule these things out. Unfortunately, most doctors don't seem to want to do this.
I know this hasn't given you the answer you were looking for, but I think it's going to be hard to find. Some others here have more experience with pain and have posted. If you search the site, you'll probably find their posts (Puggsy for one, I think)
Good luck to you,
Jay

[RandyJ]

Klonopin can be problematic... I suggest you do some real research before upping dosage or taking long term. A low dose only at night may be ok but I'd still be careful. People who take Klonopin during the day as well have lived years of their lives in a fog. (look up recent articles on Stevie Nicks talking about Klonopin)

I wouldn't want to combine Klonopin with Ambien and apnea... throw something else into the mix like a few drinks on a weekend night or Vicodin and you're asking for trouble.

[thud]

My wife has RLS bad, for many years. Her neurologist prescribed Requip and Tylenol 3. It takes it totally away. Good luck and I hope you can get some good results yourself.

[VVV]

(look up recent articles on Stevie Nicks talking about Klonopin)

I did just now look at the Newsweek interview. Stevie Nicks was a recovering cocaine addict when she started taking Klonopin. She has a nickel-sized hole in her septum from frequent snorting of cocaine.

She operated in circles of people who were in "the drug culture" and urged her to take drugs.

She also says,

The next six years (on Klonopin) were terrible. Looking back on it, I think this therapist was basically a groupie. He loved hearing stories of rock and roll and he started upping my dose. He watched me go from a beautiful, 125-pound, newly sober woman who had the world at her feet to a 170-pound woman who had the lights go out in her eyes.

She was very naive about doctors and prescription medications:

I really didn't realize it was that drug because I was taking it from a doctor and it was prescribed.

Reportedly in the videos where she talks about Klonopin, she states her dosage was 8 mg per day for six years. Wow! That is 16 times the dosage I take.

Stevie Nicks profile is a naive, not-too-intelligent, young (at the time), rock musician living and socializing in the middle of a drug culture. I am glad she is alive and drug-free today.

On the other hand, I do not run in drug circles, am very skeptical of medications and doctors, am very careful about everything I ingest, am in the gym for a strenuous workout two to five times per week, and meticulously record my body weight every 30 days.

My profile is the polar opposite of what Stevie's was. Her cautionary tale is not relevant to what I am doing.

But thanks for the reply!

[fiberfan]

Have you had blood ferritin levels checked? I can't take iron supplements and get iron shots weekly. Missing a week has a significant impact on rls severity.

If you aren't taking a magnesium supplement, I highly recommend adding one. I keep magnesium at work to take if my legs are acting up early.

I am too new to using a tens unit to be of much help (just got mine on Monday) but I am seeing great results.

In addition to caffeine I have found some meds and foods make my rls worse. When I first noticed legs getting worse shortly after taking night time meds I moved most to morning and immediately noticed quieter legs.

Some people find warm will quiet down their legs, some find cold will. I haven't tried cold but I have found while I need my feet and lower legs warm, I stopped using an electric blanket when I realized the heat was making legs worse.

[fiberfan]

and using a TENS Unit to relieve my legs at night.

Thanks for posting about your experience with using a TENS unit. That is a significant part of why I now have a TENS until and am seeing clear help with RLS and seriously suspect it is helping my PLMD based on how I feel in the morning.

[RandyJ]

My profile is the polar opposite of what Stevie's was. Her cautionary tale is not relevant to what I am doing.

But thanks for the reply!

I didn't imply that you and Stevie Nicks had anything in common; I'm sorry if you inferred anything of the sort. I meant to caution you about increasing dosage of Klonopin without doing a bit of research; Ms Nicks's tale is not the only one I have heard. I have a close friend who became dependent upon Klonopin and had a hard time detoxing from it. I cited Ms Nicks because many people don't take stories about bad drugs seriously unless it happened to a celebrity. I'm sure there are many other stories out there by many people a lot less well-known.

Klonopin and many drugs of its class have such a short half-life that many people continually increase dosage to get the same result. Before they know it they are at a much higher dosage than when they started.

Best of luck...

[kteague]

and using a TENS Unit to relieve my legs at night.

Thanks for posting about your experience with using a TENS unit. That is a significant part of why I now have a TENS until and am seeing clear help with RLS and seriously suspect it is helping my PLMD based on how I feel in the morning.

Thanks fiberfan!!! I have felt like I was on an island with this TENS Unit use. I hope you find it continues to be helpful. It took a while and was a progressive improvement for me, but I am so pleased with my progress. I'd love to hear from you from time to time about how it is going.

[mars]

Hi VVV

There is a possibility that RLS/PLMD is positional in its activation for some people.

In my arm chair I have RLS in a sitting down position, and I used to have RLS even before going to sleep (on my side). Then PLMD during the night.

Now I still have RLS on the arm chair, but I now use side sleeper thigh wedge

http://www.the-pillow.com.au/more/side_ ... r_more.php

and no more RLS before I go to sleep, and no more PLMD as far as I am aware.

Mars

[fiberfan]

There is a possibility that RLS/PLMD is positional in its activation for some people.

When my RLS is really bad, I can sometimes quiet the legs by laying on my stomach on the floor. Sleeping this way is uncomfortable for very long but I have used it to get a couple of hours of sleep on really bad nights when I have to be up and functional early.

Joanne

[VVV]

I didn't imply that you and Stevie Nicks had anything in common; I'm sorry if you inferred anything of the sort....

Apology not necessary, but accepted. I did not infer that you were comparing me to Stevie Nicks and did not take offense.

But I did want to point out that personality and lifestyle have a major impact on drug addiction. It was not discussed here, but note that addiction and dependency are two different things.

In the meantime I reduced the dosage back to the original prescription of .25 mg because .5 mg at bedtime was leaving me too groggy throughout the mornings. I must be very sensitive to Klonopin.

Hi VVV

There is a possibility that RLS/PLMD is positional in its activation for some people.

In my arm chair I have RLS in a sitting down position, and I used to have RLS even before going to sleep (on my side). Then PLMD during the night.

Now I still have RLS on the arm chair, but I now use side sleeper thigh wedge

http://www.the-pillow.com.au/more/side_ ... r_more.php

and no more RLS before I go to sleep, and no more PLMD as far as I am aware.

Mars

Positional RLS and positional sleep apnea! I have the latter and now you tell me maybe the former also!

Someone has said, "Happiness is not found in possessions, power, position, or prestige". Maybe that is 3/4 true because "happiness can be found in position".

In any case, I will continue to experiment with position, exercise, diet, sleep hygiene, and some of the other things recommended in the thread.

My serum iron level is 90 (ug/dl) so that should not be the problem. I have tried magnesium and calcium supplements for long periods of time with no apparent improvement. My sleep doc says it does not help many people. When I see the sleep doc again, I will ask him about other prescription drugs but doubt that I will experiment with another one.

All the suggestions in the thread are appreciated and if you have anymore post them.

Thanks that no one suggested a bar of Ivory soap!