Like many here I had suffered from restless leg for a long time (16 years). I never sought treatment until I was in the hospital in May for another condition. It's funny that I would wait that long for help but I was trying everything on my own (hot baths, lifting weights in the middle of the night lol) just to get by. I wasn't thrilled with the idea of going to a sleep doctor and having all the tests or taking meds, even though I was only getting broken sleep, maybe 2 to 3 hours at a time because of the severity.
But being desperate I finally asked the doctor at the hospital if I can talk to someone about it. He sent in a neurologist. After a series of questions and looking at my medical info he prescribed Gabapentin, a generic for Neurontin. After two days and ever since, I have not had one single episode of restless leg. I use to get it so bad it affected my legs, arms (from the shoulder to elbow) and neck (my neck couldn't get into a comfortable position on a pillow).
I cannot begin to tell you how amazed I am to have this burden lifted. Even though I knew how problematic and terribly frustrating RLS was, I guess I was stubborn and just tried to carry it as best as I could. Now it is only a month and a half into this but I am feeling so much better than I use to for many reasons. My regular doctor said I could build up a tolerance but so far I do not have that at all. Well come to think of it, I did have one episode after accidentally missing a day of a dose. I am not use to taking something everyday so I forget and ask myself - did I take it today? lol.
I just wanted to share my story of hope. People who do not suffer from it do not understand sometimes. But there is hope.
The Following User Says Thank You to louise1968 For This Useful Post: marginel (08-18-2011)
I am suffering from RLS, since my back surgery (L4-S1 fusion for disc herniation). Due to severe pain I was taking Dialudid, waned it to 5 mg dose once a day. When I stopped I had severe symptoms of RLS. I am finally off Dilaudid and was on Tramdol for past 45 days. Stopped it three days ago and the horror has returned. I started taking Gabapentin 300 mg once a day since yesterday night..my first horror night, unfortunately I have the same issue and it has not helped. Glad it helped you. Distraction helped before, now it is so severe I cannot sleep and am miserable. I will take any suggestion to stop this. Thanks
Hi I has rls also. I tried gabapentin and it did not work. My rls traveled into my arms to where I have to put them under my back and lay on them. Terrible! I started a drug named requip 2mg. I works for the most part.
Louise, First of all, a big thank you for sharing your success story with us!
My favorite type of news, is good news. It is interesting how we are all different in responding to medications and treatment
I use have been using Ropinrole, 1.5 mg. One hour before bedtime For those of you who can't use the Gabapentin, try the ropinrole. My sleep specialist prescribes it to me, and my dosage has been increased as my (stroke related) sleep apnea's got worse. while I started at .5 mg's I am now up to 1.5 mg's.
It really takes away that urge to move before settling down for the night. I use that time to relax and check my calender for the next day.
I am interested in what you feel caused your RLS?
I am quite sure mine were the effect of 3 strokes 8 years ago. Mine were diagnosed while in for something else. Always good to know we are not alone in this big world!
Hi Janet, I am going to look into changing to ropinrol because requip I take 2mg and the high does is I believe 4mg. I always wondered why I have rls and my two beliefs are my motorcycle accident in 1986 and/or working for 25 years standing on my feet. And always...who knows. I hate it! I'm sure everyone does. Take care all!
Did you have any head injury in the motorcycle accident? I think there are endless causes, and many with no reason at all. When you add in being difficult to respond to medications, it makes everything more different. I have had good response to many medications that I take, good thing because I have about 15.
It's always funny becasue when I am in his office. I always thought it was interesting that at every visit he "catches" me trotting my feet. I am doing it right now! It is at sleep that I really am bothered by it.
Hi Janet. Yes, I had some bleeding on the brain. I was closely monitered and they did not have to operate. Of course I was out for 3 days. My back is very bad along with my right side. Ankle, knee, hip, and now my shoulder. About RLS I rarely have it during the day and on average I get it 3-4 eve/nights a week. Sometimes I'll get a warning that it is coming in my feet and ankles, it is a weird sensation. RLS is terrible and they should study it more and find a cause and a cure. You hit it on the nail when you said some people being difficult to respond to medications. That sounds like me on many,many meds I tried for different reasons. As you know, it is so bad that I wish my legs would just fall off! You are on 15 meds? That is alot! I am behind you with 8. You take care of yourself. dee
I know exactly what you mean when you say that you wish your legs would fall off lol. I felt that way with my arms too! My rls started when I got pregnant with my first child and it was so severe I would beg my ex to rub my legs at night to try to sleep. I do not know what caused rls but it has been with me since unfortunately. After taking gabapentin it took about 4 days for the meds to start working. The relief was absolutely wonderful and I have no side affects on the meds. The rls started to came back here and there and since I am only on a low dose I have to call my doc about it because he warned me about developing a tolerance and possible need increase the dose in the future. But that does not bother me.
Now what is interesting is that I had just been recently diagnosed with adhd. One day I was searching through google for information on it and came across a study that said people with adhd are 30 to 40 times more likely to suffer from rls. I thought that was odd but interesting enough to share here.
I have not got the notification about the replies in my email from here so sorry for the late response.
Thanks for your reply! Sorry I am a little sleep deprived from work and thought Dee asked me what I thought caused rls for me. lol. I don't know really but it started when I got pregnant. I am remembering though that the neurologist told me i was b-12 low normal range and that they want to see that high normal so he gave me a supplement with the gabapentin. The symptoms started to come back here and there and now thinking about it, I have not taken b12 in about 3 weeks. Hmmmm.
Hi Louise1968. My rls does travel to my arms also not all the time but often enough. Can you list the top 5 or so symptoms of adhd? I have been asked quite a few times if I have it. I could check it out on the internet after I check my emails, which will take days. If you can great if not I'll check it out. That is amazing rls and adhd having a connection. Thanks for that info. I might get tested for adhd after I learn more about it. But if people (they were from the mental ward) I might have it. Yeah, just what I need, yet another label! I want the label "MILLIONAIRE!"
The symptoms are different for the subtypes which are inattentive, hyperactive-impulsive, and combined. I am still learning about it myself, I thought the usual diagnosis would be anxiety and depression and was thrown for a loop when after testing she said adhd. I am actually still angry a little because the more I read about it the more I feel like counselors were not listening in the past. I kept telling them the trouble I had with losing things, lack of focusing, memory (especially memory issues), feeling spacey too much like a brain fog, procrastination and big time organization problems. They always said it was anxiety. Those are inattentive subtype examples.
From what I read, people with adhd have much higher rates of smoking because nicotine is a stimulant that mimics some need for them in the brain. It just all makes sense now for me...not necessarily with the rls but with the adhd. I do not know if sleep disorders or rls have a significant relationship with adhd since all of them have their own cause, but there is compelling evidence that rls is found a lot in people with adhd from what I am reading.
The Following 2 Users Say Thank You to louise1968 For This Useful Post: dee088 (08-13-2011)
After being diagnosed with two sleep disorders about 8 years ago, I have really noticed many changes and new information about each of them. I think we all will see changes as time goes on as well, We might be the guinea pigs of all this new technology, while being on the cutting edge of the newest machinery and ideas.
Just my doctor alone has gone from a regular office on the campus of a hospital..to creating his own sleep center, in which the exam rooms turn into "hotel rooms" for overnight evaluations. Besides a bathroom for his patients all day, he also has a beautiful shower, stocked with fresh thick towels, and all a person would need to get up and off to work. The lunch room is now coffee room, complete with fancy teas, Starbucks coffee, nighttime snacks and morning pastries and fruit.
The wall unit by day drops down, it becomes a luxuriously made bed, with high quality sheets, pillows and blankets. The desk becomes a night table, with a soft light and storage for your things. With a good eye you can see the cameras mounted to "watch" you sleep, and out of the wall comes a tube of wires that will eventually will be hooked up to your head,, arms legs and everywhere
I also know that every night when I sleep, my doctor will know that if I get up, my mask leaks, I stay up until 3 am, and sleep in till 11 am...or that I nap many afternoons. He also knows when I am in trouble when I sleep, a month later, of course.
This is a big new field of medicine that we are all in on. It will probably take all of us to keep up with the newest changes and discoveries that come along, I am happy to do that. Thanks to all for all your help.