Has anyone experienced this?

[SueJohnson]

I am tapering ropinirole from 4 mg by .25 mg and last night went down to 2.75 mg. I did not have any augmentation and have had an easy time with the tapering. I, also, tapered my clonazepam down from .5 mg to ,25 mg by January 19th and I am temporarily staying at .25 .I have been taking 100 mg of gabapentin at bedtime and again in the morning for pain in my legs, although it hasn't helped. Normally I would sleep for awhile and then wake up to pain and have to get up. On January 25th and on January 28th, I wasn't able to sleep at all and on January 27th I only slept one and a half hours. So my doctor increased my dose of gabapentin to 300 mg last night and as mentioned I, also, went down to 2.75 mg of ropinirole. I slept beautifully for four and a half hours. Then I woke up and it was like a balloon containing bits of pain exploded. Quite painful and lasted about a half hour gradually getting better. This is something I never experienced before and I was wondering if anyone else had.

[involuntarydancer]

No! It’s sounds very disconcerting though. Not something I want to add to my list of rls experiences. I hope you track down the cause.

[Tobias10]

Right before Christmas I experienced a few times where leg pain came on fast and made it impossible to lay down or sit comfortably. Out of desperation I got a tube of BioFreeze from the cupboard and put some on the affected leg and it was amazing the relief that I got - enough so that I was able to lay down and sleep for a couple of hours. Since my sleep is always so short-term, that was all I needed to function for a long stretch before my RLS kicked in. It might not work for everyone, and there are other products out there that do the same as BioFreeze, but this is what I experienced.

[Felicity21]

Hi Sue, Last winter I went through a similar experience. I decided to taper down slowly the Rotigotine Neupropatch and with the help of an expensive London Neurologist introduce Gabapentin. I was hoping the Ligands would be a much better treatment for RLS. I even went up to 1200 mg of Gabapentin. It worked for a bit. So I even thought I could taper down my 0.5 mg Clonazepam. That was a complete disaster because I lay awake all night. I am afraid the Gabapentin stopped working at night. The whole experience took me 6 miserable months, pacing around the house and sleeping in the spare room. I had trouble with intense pain shoots like you which I thought was terrible cramp. My eyesight deteriorated. So I went back to my old Neurologist (don’t know why I changed) who advised tapering down the Gabapentin slowly. I am now on my new combination meds which has been marvellous for the last 11 months. I am still on 0.5 Clonazepam, which helps me sleep, then for RLS I take 0.28 mg of Prolonged Release Mirapex (I am not increasing that because it would cause Augmentation) plus 2 co-dydramol (10/500) which can’t be increased because of the paracetamol) and 1 Senokot max. strength for constipation. Good luck.

[RLSofManyYears]

Sue

If you were on 4mg Ropinirole then you were most likely experiencing augmentation and with the reduction then you start to experience the withdrawal side-effects - basically things get worse for a while before easing off again. It took me a year to reduce from 4mg and it was not easy, I'm sorry to say. However it is better to be off the Ropinirole than dependent on it with the problems of augmentation. Reduce slowly over several weeks at a time - never stop taking it or ramp down too quickly.

Please note that it takes a few weeks for Gabapentin to start to take full effect.

[landdebbie]

Hi I was on gabpentin found I got pain it didn't work so came off it.I tend to not sleep more due to pain than the restless legs.

[Hidden]

I used to experience something that sounds similar to what you describe. It just depends where you get the pain, but in my case it turned out to be a condition called proctalgia fugax.

It usually occurred in the early hours, suddenly woke me up and lasted, at most, half an hour. The pain was a dull continuous pain and quite intense.

It also had an unsettling quality, it gave the intense feeling of wanting to do something.

In my case it is caused by muscle spasm.

Your pain waking you up then fading over half an hour then, sounds like muscle spasm.

What's causing it is not clear. One possible explanation is clonazepam withdrawal. Since benzodiazepines like clonazepam have a muscle relaxation effect, withdrawing it can cause the opposite because long term use causes dependency.

Another possibility is electrolyte imblalance.

As regards gabapentin, the usual starting dose is 300mg a day. (If under 65, for over 65, 100mg). It then needs to be titrated up until it takes effect. A typical effective dose for neuropathic pain and RLS is 900mg.

For nerve pain this is usually divided 3 X 300mg.

For RLS alone it can be divided into 2 doses e.g. 300mg and 600mg, both later in the day.

I hope this helps.

[SueJohnson in reply to Hidden]

I started gabapentin at 100 mg, but am now at 500 mg and am able to sleep through the night without pain , except for getting up 2 times to go to the bathroom. Just started it last night. I still have pain during the day, but am experimenting with that. I am on .25 clonazepam since Jan 19th down from .5 mg, but will eventually be tapering off that. And am down to 2.5 mg of ropinirole from 4.0 and having no withdrawal effects am now reducing it by .25 every 5 days without problems.

[Hidden in reply to SueJohnson]

Sounds like things are going well.

I hope you continue with no problems.