I'm trying to understand my RL still- and probably will forever! I'm wondering whether gabapentin is also a drug that can cause augmentation. I've been on it for about 10 years on 2800mg/day. Any ideas welcome.
Meanwhile I'm down to 1/4 the dose of pramipexole that I was on in November but having awful nights with not much sleep. Rarely any more than 45 minutes at a time, and I guess about 3 - 4 hours altogether on a good night. Often it's my pain that triggers it, from arthritis. I'm on tramadol to help with pain control.
My RL is on and off all day and night so no relief ever. If I think my legs are calm in the daytime I'll lay down for a nap but it usually is 15 minutes and I'm up again with legs.
I've watched a documentary on meditation and pain and there were very positive results in pain management after only 8 weeks. I'm thinking of trying the program but don't know if I'd even get to do the practise without RL butting in. Again, comments welcome.
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restlessstoz
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Thank you. I have to stay strong but it's so hard to keep focused when I'm so tired. I want so much to just lay down and sleep but my legs won't let me. Then I get an hours sleep or less and am awake with legs again! Tonight my arthritis is really painful- it's the weather I think, a low bringing rain... so that means that my legs are responding to that and playing up more.
We say, one thing works one night and then not the next but perhaps none of it helps and we're all running round a disease that pleases itself and waxes and wanes when it choses and we try to put meaning to it. I think I'm going mad!!!
This hellish syndrome has a mind of its own, that’s for sure!
I know you want to lay down hon; I hear you loud and clear!
Maybe the end of this story will help:
I went through horrible augmentation on Pramipexole in for about 7 months in 2015/into 2016. It was my own private Hell on Earth and was very traumatic. If I was able to sleep, it was for a few hours during the days. Although I say I was able to catch some sleep when the sun was up, that wasn’t always the case. I had countless 48-hour periods with no sleep whatsoever all because of my symptoms. I prayed for my heart to stop beating so that my torture would end. I was in utter despair of things getting better. I told people that I was doomed to walk the streets. I contemplated suicide at multiple points during this time.
This Hell ended in February 2016. I made it through! My heart was still beating! I was ecstatic!
My Hell ended and so will yours! It does get better, a statement I never thought I’d be around to say.
OH Sails, you really did suffer! I'm so glad you're able to say you got through. I will take heart from your story and keep going and hope that one day things will be better. It's hard to believe it now but if you felt the same and you got through then maybe I will too. Thank you for the encouragement and sharing your story.
God, me too! If I had given in to what looked sooooo tempting, I would’ve never been able to experience the joy of coming out on the other end!
Yes, from your viewpoint right now it is pretty darn impossible to believe that things will improve. You know things won’t improve in the slightest and to hear others say it will is heartbreaking because they are telling you something that you know won’t happen.
There was one major difference between those who told me it would improve and me, though, and that is that they didn’t have RLS. They didn’t know how much my symptoms were hurting me. They didn’t know my symptoms were torturing me in a way that they couldn’t even begin to imagine.
I believe that the only people who can tell you it will get better so that you’ll believe it are fellow sufferers. Let me and the others on here be those people.
You want to know what I’ll be doing tonight? Going to the gym and then out with my wonderful husband. Knowing now what you do about my journey, do you think I would’ve felt like doing any of that?
I won’t say that I’ve made a u-turn in all aspects of my RLS journey, but I definitely have made a u-turn in the “utter despair, wanting to kill myself” department. And that is the best gift anyone could ask for.
Hi there, I have just started on gabapentin and hope it'll help me. I do practice meditation, started long before my rls kicked in, but when my symptoms started last summer I really struggled to keep up with my practice. I have recently taken it up again though - not a cure all but really helps me to accept the symptoms and reduces my anxiety a lot. Worth a try. I found the Breathworks resources fab, aimed at people with chronic pain and long-term health conditions. Vidymala Burch's book "mindfulness for health" is good and the website has online courses if you aren't uk-based
Tonight I started on just less than a half tablet. So just less than 0.25. I shave a tiny bit off gradually working down smaller and smaller over a few days/weeks. Depending how the withdrawal will affect me.
I'd love to use a better option than tramadol but have to convince my GP first. I'll be seeing a doctor this week, and trying to get some help- my GP is away until at least 20th March! Thanks for the advice. I'll certainly take it if I can.
If it is this bad with the last dose of pramipexole, maybe you want to consider to stop at once, rather than keep in taking tiny steps. Just a thought.
Re augmentation on tramadol, I would like to doenplay Parminter’s statement. Augmentation on tramadol has indeed been reported, from high doses multiple times a day. But “common” with respect to tramadol and augmentation is likely quite a bit overstated. I agree with the others that withdrawal from the pramipexole (reduction) is te by far likelier culprit.
I will do just that. I've been in bed already as I was so tired. Now I'm up again and leg going already! I'm thinking of emailing my neurologist directly as my Gp is away. Tell him how bad things are and see what he says. He's not local so not easy to see, but he flies in for consultations but I'm not sure how often. He might respond to an email though. He's a nice person and wouldn't like anyone to be suffering unnecessarily.
Thanks Parminter for your advice. It's great to have this network to support me at this horrible time.
Oz, I was on 0.25mg when I quit. (I augmented early on 0.125mg).
I never slept, and sleeping pills did not help.
I was a basket case, really ill - and I was plagued by very damaging compulsive behaviours which stripped my bank account.
When I tried to reduce my dose all hell broke loose.
Then I was given a little methadone, after taking my doctor all the evidence I could find, to help with breakthroughs. (I took him a file full of scientific articles).
One day I had a massive daytime attack and I was terrified. (You know that hopeless feeling?)
I took 15mg methadone immediately. That night, with no other pills, I slept for 7 hours straight for the first time in many years.
The next day I reduced to 10mg, and slowly down to 5mg. I did not ask my doctor, as I knew he trusted me.
After two weeks I went to report to him - he was amazed, and happy, and grateful.
Now I am at 18 weeks.
Methadone has a very long half-life, so one dose lasts 24 hours or more. So it is possible to sleep in the afternoon! Wow!
I've just written to my neurologist stating the situation and what I'm currently experiencing, the drugs I'm taking and the desperation. I hope he will read it in the morning and phone me!!!!
I don't think Gabapentin can cause augmentation. I've been taking 1200 mg. for over 2 years and never needed more. Just as an FYI, my neurologist told me that you need more gabapentin for pain than you do for RLS. So I don't know if you need higher dose due to RLS or pain...
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