Restless Legs Syndrome (RLS) Discussion Board

rthom wrote:

EeFall wrote:Yeah, we forget the bad stuff Also doesn't help that I have been taking Lyrica for years at 150mg in morning and 150mg in evening.

Ah now that makes more sense.

This is the first time in 4 hours I have been able to use computer, been mostly pacing all night. I have been taking some kind of medication for RLS since 2000. I suppose that is the doctors point, I have not gone 10 days without any medication since then and now can't remember exactly when I first started taking a dopamine agonist (DA) but it must have been around that time period. I am pretty sure I took .125mg of mirapex for about 6 years in a row until I augmented on it the first time and now doctor Earley says that I should never have taken it again since that happened which I believe was about 2008. He has an idea that the DA augmentation along with my severe sleep apnea is keeping me spiraling out of control and it won't stop until I get off of all DA's, and then never go back to them.

After this night of hell I'm not sure why he had me go cold turkey on Lyrica. I don't think he thought it was that big of a problem with Lyrica but now that I see the results I would have cut back by taking only the nighttime dose, and then no Lyrica after several days of halving it. I may have told him the wrong dose though initially I told him I took .5 mg of methadone, not 5 mg tabs 2 1/2 times a day. I didn't think I was actually aware that I took 300mg a day of Lyrica until today so I may have told him I was taking like 50mg at a shot. Of course the records that were sent to Johns Hopkins should have the correct dosage though.

It very probably is withdrawal from Lyrica. I had to stop 900 mg's of Neurontin cold turkey and I felt almost exactly the same as you do with Lyrica )they are the same tye of meds). I was not at all afraid to stop it, I thought it would be quite easy. No so, it was a nasty withdrawal. Only I can't remember how long it lasted and why I had to do it. And of course my RLS worsened maybe because of the anxiety I guess.

Gosh, I wish time will pass quickly for you!

Corrie

Wow, it's amazing how these meds work. I went off 3600mg/day of Neurontin (was on it for over 2 yrs consistently and about 10 yrs mostly), and I dropped it cold turkey---outcome---no problems at all. Weird eh? We all re-act so differently to the stuff. I wonder if WED folks vary with any meds more than "normal" folks? Maybe WED is more like 2-3 different diseases and they just don't know it yet, and that's why we are all so different in responses? Hmmm wonder...

I'm sitting at clinic waiting room trying to get in for lab tests. Just found out tests are for 3 doctors that has to be a record for me lol

Eefall - we are there with you.. in spirit.

We have a very local expression...'' keep 'er lit''..... as in 'keep her lit'... and it means 'keep on going, don't stop'.

rthom wrote:Wow, it's amazing how these meds work. I went off 3600mg/day of Neurontin (was on it for over 2 yrs consistently and about 10 yrs mostly), and I dropped it cold turkey---outcome---no problems at all. Weird eh? We all re-act so differently to the stuff. I wonder if WED folks vary with any meds more than "normal" folks? Maybe WED is more like 2-3 different diseases and they just don't know it yet, and that's why we are all so different in responses? Hmmm wonder...

Neurontin had no effect on me I could take it like candy and no problem stopping, Lyrica is very strong stuff to me compared to Neurontin. They may be related but not same at all to the way I react to it.

Polar Bear wrote:Eefall - we are there with you.. in spirit.

We have a very local expression...'' keep 'er lit''..... as in 'keep her lit'... and it means 'keep on going, don't stop'.

Keep on truckin! I intend to, it is about my last chance for a (semi) normal life.

Yep .. keep on truckin... same thing.

Believe it or not, I am headed for bed and I hope it works. It seems like the medication for RLS/WED is working tonight. I'm going to go see it is 11:25 pm

Edit:
I only slept until 1:30 AM and then woke with a start from RLS, but 2 hours was better than nothing

Mostly I worked my butt off around the house fixing things and doing things like mowing, cleaning out the gutters, hanging pictures, cleaning, that kind of thing. I couldn't sit down much most of the day. WED sucks, WED and withdrawals is even worse. This was my third day of not having Lyrica which will be a piece of cake compared to taking half my pramipexole away starting tomorrow from .25 mg in the evening to .125. I think that lasts 5 days - no Lyrica and 1/2 pramipexole and then on to no Lyrica and no pramipexole, then after that it is starting to reduce methadone. Fun times...not

No, I imagine it really, really blows.

I lucked out by sleeping 2 hours last night, it is now past 11PM and I can't imagine that I will get to bed tonight. It really is now mostly about withdrawals, I can feel the craving within my skin. Crows are driving me bonkers during the day, I thought maybe it was just me but my wife mentioned them too, pesky, noisy, obnoxious birds. I think I am being a little contrary

I didn't sleep at all last night, zip, zero. Withdrawals exceeded RLS for sure. Hard to explain because my withdrawals are similar to RLS but more intense. I successfully did the 3 days without Lyrica, tonight I am suppose to half my pramipexole (dear God no) this is NOT going to be good I fear. I just got done weeding underneath our porch out front. I am almost constantly finding something else to do (the alternative I suppose would be to start screaming) and it helps to keep busy doing manual labor.

This definitely does not sound easy.
You are doing so well.
We are with you.

After my last week of getting of of a DA from augmentation (and with methadone to help), I can only imagine how hard this is. I only got a few hours sleep and I HAD drugs to help....

The only good thing is that you know there will be another side and when you stop, you will be much better off.