Treatment of RLS with Gabapentin (Neurontin)

[Jay Aitchsee]

http://www.la-press.com/gabapentin-enac ... icle-a2368

Here's a paper you may find interesting.

Jay

[kentoboo]

Kolonopin has been a wonder drug for me. I do not have rls but have mild anxiety from time to time. I take a .5/mg of kolonopin and it works great. I have to be careful taking it at bedtime though, relaxes me so much I wet the bed once and did not even know it! I am very careful about taking this though, maybe once or twice a month. I feel too good after taking it!

[VVV]

http://www.la-press.com/gabapentin-enac ... icle-a2368

Here's a paper you may find interesting.

Jay

That is quite interesting and I will discuss it with my sleep doc on the next visit. I will make a separate post to see if anyone here has taken the drug. Thanks Jay!

This weekend a friend told me he took quinine tablets for years and it treated his RLS perfectly and was very cheap. Now he has tried several drugs and between the lack of effectiveness and bad side effects he is suffering like me.

He is bitter about the FDA. Some story about millions of people took millions of doses for years with good, cheap success and a few people took entire bottles at once and killed themselves so the FDA banned quinine. He thinks the FDA was paid off by companies producing patented expensive drugs. I will look into this some more.

[Meowser]

A med you might want to look into in Lyrica. I use it for nerve damage in my lower back which in turns goes into RLS. If i dont keep up on my doses, i feel like I have spiders under my skin... It totally takes it away.

Best of luck!

[Jay Aitchsee]

VVV, you are welcome. Note that gabapentin (Nuerotin), gabapentin-encarbil (Horizant), and pregabalin (Lyrica) are pharmacologically related. I believe all three have been used with some success in treating RLS and all three are thought to promote "deep" or slow wave sleep (SWS). Yours to research further.

Jay

[Bright Choice]

I have had really great success with taking mg. I also take a small dose of Requip but have been fearful of the need to constantly increase the Requip dose, which I don't want to do. What I find is that when I have a hint of RLS or leg jerks at night, there is a 100% relationship with the fact that I have slacked off on my mg protocol.

Mg loss is at a cellular level - a serum mg will not necessarily reflect a deficiency. Also, it takes time to build up mg - don't expect overnight results. And not all magnesium products are equal. It is very important to take the kind that actually absorbs and works. There are many ways you can get good mg, topical, oral, bath soaks, liquid.

My "go to" source for info on mg is Dr. Carolyn Dean - MD and ND. http://drcarolyndean.com/

This is just what works for me, ymmv

Good luck!

[VVV]

VVV, you are welcome. Note that gabapentin (Nuerotin), gabapentin-encarbil (Horizant), and pregabalin (Lyrica) are pharmacologically related. I believe all three have been used with some success in treating RLS and all three are thought to promote "deep" or slow wave sleep (SWS). Yours to research further.

Jay

Here are my insurance costs -

LYRICA (pregabalin) - $2196 per year (no generic available)

Horizant ( gabapentin-encarbil) - $1296 per year (no generic available)

gabapentin (generic Nuerotin) - $252 per year

I will have these numbers available for the next discussion with my sleep doc. The last visit he ran off a list of drugs and let me choose. I chose cheap (generic Klonopin - $3.14/month)) and will probably choose cheap again (generic gabapentin). The doc indicated it was a matter of experimentation to find the right drug for each individual, so it seems only appropriate to experiment on the cheap end. Yes?

Jay, That paper you cited makes Horizant sound interesting. I will ask the doc about his opinion and experience. Cheap is nice, but for me the sleeplessness caused by RLS has a big negative impact on my quality of life and $1296 per year for Horizant is certainly under consideration.




BTW, In that paper I found this interesting statement,

Ropinirole(Requip)-treated individuals experienced lighter sleep, reduced deep sleep, less REM
sleep, diminished sleep efficiency and reduced overall sleep.

So Requip is a very popular drug for RLS but it has a negative impact on sleep????

I can tolerate the pain; it's the lack of sleep that is killing me.

[VVV]

I have had really great success with taking mg.

I tried magnesium citrate with no apparent improvement but I will ask the doc about it.

[VVV]

I regularly have the RLS-characteristic and uncomfortable feeling of "just needing to move the legs", but at many times there is significant pain also. This morning I awoke early with severe pain down each upper/outer thigh. Maybe I should also ask the doc about cheap opiates??

[Bright Choice]

I regularly have the RLS-characteristic and uncomfortable feeling of "just needing to move the legs", but at many times there is significant pain also. This morning I awoke early with severe pain down each upper/outer thigh. Maybe I should also ask the doc about cheap opiates??

Maybe the pain is something other than RLS. Bursitis? Pinched nerve in your back?

[kteague]

I regularly have the RLS-characteristic and uncomfortable feeling of "just needing to move the legs", but at many times there is significant pain also. This morning I awoke early with severe pain down each upper/outer thigh. Maybe I should also ask the doc about cheap opiates??

Just from my perspective, I would first want to know any added meds were potentially capable of treating the cause of the pain before resorting to a med to treat the pain. Muscle pain in the legs could be from PLMD. Just one point of clarity about using the TENS Unit. It has a dual effect. My legs are less painful partly because the TENS is designed to reduce the sensations of pain. But in addition, the sensations causing the legs to move have been interrupted, so my legs are no longer worn out from working all night. If you do find your leg pain is PLMD, without causing your legs to move less, your legs will not be able to rest and be restored overnight. I'm not suggesting you or anyone not take whatever meds will produce restful sleep. Just wish everyone for whom a non-pharmaceutical approach could work could experience relief without side effects. I know that's not everyone, but there's got to be more of us. Best wishes as you move forward.

[Jay Aitchsee]

...
BTW, In that paper I found this interesting statement,

Ropinirole(Requip)-treated individuals experienced lighter sleep, reduced deep sleep, less REM
sleep, diminished sleep efficiency and reduced overall sleep.

So Requip is a very popular drug for RLS but it has a negative impact on sleep????.....

Well, I don't know that it has a negative impact on sleep. Only that it does not promote deep sleep. I have PLMD. I have taken ropinirole (Requip). I found it to have a slightly calming effect on my PLMD as verified by my home sleep lab video, but my sleep became more fragmented with more awakenings. I do not have RLS, though it is thought to be related to PLMD. That said, I do not think you can make judgements about how any particular drug will affect your sleep based on someone else's experience. All you can do is be informed and conduct your own trials. There is enough clinical evidence to be wary of many drugs that are commonly prescribed for sleep. Many of these negatively affect either REM or SWS so that one does not obtain the proper sleep architecture, even though the drug may be quite sedating in nature.

As for cost, I think the generic gabapentin may well give you some insight as to whether or not the Horizant will work. As I understand it, gabapentin has a short half life and people tend to become dose tolerant, but Horizant is supposed overcome this. Often, you can get sufficient samples from your Dr to know if a drug will work for you. If you find one, then, as you said, it may well be worth the cost.

Additionally, I agree with Kteague and Bright Choice that you may want to explore the source of your pain further. As Kteague said, PLMD is a possibility, but that should have been noted on your PSG. For pain meds, I think there are quite a few posts here citing pros and cons. I think Pugsy has done several, but again you must be mindful of the effects on sleep architecture. Which I guess brings us back to Horizant or generic as definitely worth considering.

VVV, this sleep business isn't easy. I wish it were. Lots of trial and error and lots of theories, but few answers that fit all people. I will suggest though, that you fix what you can first. I haven't reviewed your posts, I don't know about your apnea, sleep hygiene or other factors that influence sleep. But I can tell you, I spent a lot of time looking for a "cure" before I was cpap compliant and wouldn't have known it had I found it.

Good luck to you,
Jay

[fiberfan]

I have had really great success with taking mg.

I tried magnesium citrate with no apparent improvement but I will ask the doc about it.

How much did you take? One of the reasons I see a naturopath is that I am using magnesium like a pharmaceutical. Most mds have little training in nutrition and supplements while many alternative medical professionals have lots.

Have you considered trying a different form of magnesium? I take magnesium oxide which theoretically is one of the least absorb-able forms of magnesium. I tried switching to a chelated magnesium and found the rls and some muscle issues that magnesium helps with were worse.

[HoseCrusher]

One of the problems with magnesium is that if you take too much the laxative effect will actually deplete you of magnesium, and other nutrients.

It is all about balance.

I find that magnesium malate provides magnesium as well as malic acid which aids in digestion. Green leafy vegetables and some nuts are a good dietary source of magnesium.

You also need to keep in mind that magnesium by itself works differently in the body than if you combine calcium with magnesium. Nerve health requires magnesium separate from calcium.

[VVV]

Just for the record, even if only for my record as the memory is not what it once was, I will update this thread.

• 1. On November 15 I commenced with 300 mg gabapentin one hour before bedtime. The prescription called for 300 mg for the first three nights, then 600 mg for three nights, and then settling in with 900 mg until the next doctor visit in four months.
  
  2. After nearly one month I have maintained the lowest dose (300 mg) and have not experimented with a higher dose. The first six days were amazing. The feeling was recreational - very much at peace with the world. RLS was improved. However, by subjective measures there were many awakenings during the night and much remembered dreaming. Other effects were dry eyes and dry mouth although not as bad as with 500 mg klonopin.
  
  3. After six days the recreational feeling ceased but RLS remained improved. Unfortunately I was now awakening after four hours of sleep with twitchy legs feeling and difficulty of sleeping the remainder of the night.
  
  4. After 14 days I called the doctor to report #3 above and complain about dry eyes and dry mouth. Doctor advised me to began taking naproxen sodium (Aleve) at bedtime. I told her I had tried this sometime ago and it resulted in many awakenings and remembered dreams. She objected that I was not taking gabapentin at that time and should try again. I tried for ten days but awakenings and remembered dreams worsened. Aleve was dropped from my routine.
  
  5. I, somewhat selfishly and under the guise of a purely social and nutritional meeting, arranged for lunch with a couple who have pain problems and sleeping difficulties. We had a long discussion about medications they had tried over many years.
  
  6. I decided, in addition to 300 mg gabapentin at bedtime, to began taking 2 x 200 mg ibuprofen and 2 x 500 mg acetaminophen upon the first awakening (usually after about 4 hours of initial sleep). This has been my routine for the last seven nights and I have had a good week. Most nights I can fall asleep after the first awakening and dosing with ibuprofen/acetaminophen within 30 to 40 minutes and sleep another three hours. This is giving me most nights seven hours of sleep, with few awakenings and few remembered dreams. Seven hours of sleep seems to be on the lower end of the range for of a good night's sleep for me so I am quite pleased with this drug routine.
  
  7. During the seven days on this routine I have felt good energy throughout the day. This includes through heavy gym workouts and significant social events along with about 20 hours per week of consulting work (semi-retired). One night we were at the movie house for three hours and the need to move my legs was minimal. The ultimate test, a three-hour drive where leg movement is restricted, will wait until January.
  
  8. After about 25 days of gabapentin at 300 mg, the symptoms of dry mouth and dry eyes have diminished to the level of minor nuisance.
  
  9. I will maintain current dosages of gabapentin/ibuprofen/acetaminophen until at least early January. We have adult children and friends staying with us over the holidays and I do not want to inflict upon them any personality change effects caused by an increase in gabapentin dosage. haha. I noted on the psych meds forums they refer to Neurontin (branded gabapentin) as Morontin (haha) due to side effects experienced by many. I could identify with this during my first six days on the drug. Fortunately, I mostly run with a loose crowd and did not stand out in social interaction during those six days.
  
  I am of the opinion that the journey into drugs may not have reached an endpoint and I may call on all of you for additional advice. The study on Horizant (prodrug of gabapentin) that Jay Aitchsee referenced is quite encouraging if my current drug routine begins to fail. If I am not satisfied with treatment, I will discuss this again with the doctor at my March appointment.
  
  Thanks for everyone's comments especially Jay Aitchsee.