Restless Legs Syndrome (RLS) Discussion Board

Sleep, what bliss.
I am very happy for you.

Yes, Neurontin is a great drug for RLS. It helped me for 11 yrs. and max dose @ times of 3600mgs. However, I have recently been switched to Lyrica 150 mg 3 times a day. My insomnia and RLS are under control. I'm very happy to read that another RLS patient is getting RELIEF. Only us sufferers can truly understand how this disorder affects every aspect of our life. You may need to add an opiate down the road. But for now enjoy the symptom-free times.

Thank you all for the well-wishes.

I'm not totally symptom free, I still feel it a little bit in the evenings. But they fade away as the evening continues and are pretty much gone when I go to bed at around 10. I asked the neuro why it was in such a regular time frame, he said it could be the stress of the workday draining off, but he didn't really know for sure except to say other patients have reported the same.

I can't believe it's stress. My job is, for the most part, boring (but interesting). I work in an office all day at my own pace. It can be exciting and stressful at times, especially when on travel, but they are few and far between.

runkun: I was diagnosed with peripheral neuropathy, not RLS. My GP and I thought it was RLS until he sent me to a Neurologist when I told him things were getting worse and was wanting a more potent treatment.

Just curious about that turn-around diagnosis..

Do you at all get the urge to move, and get relief when you do?

Don't know if that's ever been asked. As that would still be RLS, and its still possible to have both.

I haven't read back over the entire thread in a while though, so maybe we went over this already

Zach wrote:Do you at all get the urge to move, and get relief when you do?

That's a tough one to answer. I'm going to say no. I could sit or lay still without having an obsessive compulsive need to move. I chose to move because I knew I would get some temporary relief by walking around a bit.

Hard to differentiate the two desires.

Usually walking around didn't help at all except for the time when I was on my feet. The instant I sat or lay down, the creepy-crawlies would intrude.

I would still consider that RLS then. But maybe I'm wrong there.

I know the urge to move & relief from movement are often formed in the same question, but I tend to consider them separate issues in some regard.

However if the Neurontin is helping minimize that, then I would say that's a good thing. It is quite possible to have both RLS and neuropathy though.

After six weeks of feeling good, the Neurontin has lost it's effectiveness. The last week has been just miserable. I've resorted to taking a Xanax at bedtime again to be able to sleep.

It's such a let-down after the initial success. I had hoped that the relief would have a longer duration.

Called the neurologist yesterday and he is adjusting the dosage to the near maximum and trying a different dosing schedule for when the creepy crawlies are most prevalent and bothersome . Will be picking up my new prescription tomorrow. Here's hoping that I get the same relief as before. If not, I guess it's on to the next med.

Also like to share a quote with you that I read somewhere that a 100+ year old woman had written. I try to keep this in mind when I feel that no one "gets" your personal suffering.

"Don't compare your life to others. You have no idea what their journey is all about."

It may be worth switching over to Lyrica if Neurontin helps but has lost effectiveness. They are very closely related and Lyrica can often help when Neurontin begins to fail, and at a much lower dose.

Great quote.

That just sux that it's stopped working like that. I hope the increase helps. As Zach noted, maybe switching to a similar drug might do the trick. My fingers are crossed.

The increased dose didn't help other than to make me more groggy during the day. Had another appt with the neuro last week and he wants to add cymbalta at night time.

I'm a little nervous about that. The prevailing opinion here seems to be that cymbalta makes the RLS worse. Since he's confident that it's neuropathy, I shouldn't be worse off and should give it a try. However, he phoned me while on the way home and left a message to caution me to first take it only at night, close to or during dinner, to gauge the effect and let him know immediately if my symptoms increased.

I am hopeful for it's effect as an anti-depressant though, I have become somewhat depressed over the past few months dealing with this. I've become lethargic and somewhat irritable.

I'm scheduled for a sleep study in a few weeks and will meet again in a month.

Have to fill the script and see what happens...

I hope things go good with the new script.

You just won't know until you try it. If it's neuropathy, it won't matter. If it's RLS and neuropathy, it still might not matter. One study said that it was a relatively small percentage of people who were bothered by the SSRIs. It ranged from 10% to maybe 30% depending on which one, but that still leaves a minimum of 70% that aren't and upward of 90% chance that it will be just fine.

Like you, though, I hate taking ANY odds at making this stuff worse!

Tried the Cymbalta. Stopped after 3 days, because my symptoms intensified until I felt my whole body was vibrating, even during the day.

I called the neuro on the third day, explaining my experience and saying I was discontuing it. I received a call from the nurse the next day saying it takes 3-4 weeks to become effective.

Now the literature I saw on Cymbalta says that 3-4 weeks is needed for it to become effective for depression not fibermyalgia. Made me wonder if she knew what I was taking it for.

I told her that I wasn't going to suffer for 3-4 weeks. So, I was scheduled for another consultation. I just saw the doctor last week!

Starting to lose faith in this guy after the initial success. I certainly don't want to keep taking off work, driving to his office and pay for another office visit for a consultation we could do on the phone. Believe me this will be part of the "consultation" today.

Lately I'm finding doctors who used to call me all the time to discuss medications or whatever will not. I have to make an appointment to see them and pay for a visit in order to discuss the simplest thing.

Dale

Sleuth wrote:Lately I'm finding doctors who used to call me all the time to discuss medications or whatever will not. I have to make an appointment to see them and pay for a visit in order to discuss the simplest thing.

Dale

Yep, I'm starting to feel that they're just about making money. My visit last week was just consultation, he didn't examine me other than a nurse took my blood pressure. And now another visit just to talk.

I've already compiled a list of other neurologists in my area and will likely leave him however the visit turns out.

Fortunately I live pretty close to a hospital and there are a lot of doctors and neuros offices that are closer to home. At least I won't have to waste 90 minutes driving cross town and back.