Like many I was on a dopamine antagist - pramipexole - and had to stop due to augmentation. I am now starting on pregabalin.
I used to be able to meditate or take a nap when I was sleepy during the day. Now I can’t anymore. I try and everything shakes.
Is there some hope this may get better so that I can occasionally rest during the day? I used to meditate but can’t sit still anymore. This is hard to live with.
When did you stop Pramipexole and what dose were you on?What dose of pregabalin are you now taking and when?
Gabapentin and pregabalin often do not work for people who have been on dopamine agonists for years. Experts believe dopamine agonists cause permanent damage.
However, pregabalin works for many people and does cover their RLS.
It takes at least 2 months for withdrawals from Pramipexole to settle. It takes at least a month at effective dose (150 to 250mg) of pregabalin for RLS symptoms to settle.
Also- you need serum ferritin levels to be above 200ųg ideally. What are your latest iron panel blood test results?
Are you on any trigger medications?
RLSUK website lists these under medications to avoid.
If pregabalin doesn't work after 2 or 3 months, you might have to switch to methadone or Buprenorphine.
I take 0.4mg Buprenorphine and have zero RLS and can lie still to meditate.
As Dr Buchfuhrer from California says- 95 -98% of patients can be RLS free with the RIGHT doctor using the RIGHT tools.
Thank you and thank you and thank you.
I stopped taking pramipexole when it became no longer effective. I was on it for about 15 years with increasing amounts.
I had been taking Zoloft but stopped that about 4 months ago when I learned it could contribute to the RLS. My iron showed at 136 ferritin but it may not be accurate because I didn’t restrict red meat before (learned about that later). My iron saturation is at 17% which is low.
I will try the pregabalin and am open to giving that a few months. I have an appointment with Dr. B later this month.
What are your thoughts about an iron transfusion??? Not sure why but my doctor has not ordered this for me. Just had me on oral iron.
Oral iron can take many months/years to raise levels to required levels. As your saturation is 17% that indicates you would benefit from an infusion.Many RLS patients only see a response to iron when serum ferritin is above 200ųg or 300ųg/L.
In the meantime take iron supplements every other day with Vit C on empty stomach. Read all recent replies by SueJohnson to posts in last week (click on her name) & she has several tips to ensure optimum iron absorption.
Dr B is excellent and will arrange iron infusions and monitor your response to pregabalin.
If it doesn't help- he will prescribe Buprenorphine.
Stay positive. Withdrawals from 15 years on poisonous Pramipexole will take months/a year to settle properly.
But with Dr Buchfuhrer's help, you will find the right meds and you will be able to rest/meditate again.
I agree with Joolsg. It can take some time. How much pregabalin are you taking?
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Thank you. I am desperate to get a handle on this. I have been mostly eating vegetables and fish - Mediterranean diet, and stopped other meds - antidepressant, sleep aids, etc.
I keep thinking an iron infusion could help but my doctor has not ordered one for me. My ferritin is in the 130s but iron “saturation “ is under 20%. I am going to ask for that again.
If iron saturation is under 20% you definitely need one.
When I was going off pramipexole my rls was in my whole body. After a few horrible weeks it subsided. I now take tramacet daily and it's somewhat helping. All the best to u
Have you talked to your Doctor about adding a short run of a low dose opioid during the transition period? Gab/Pregab is going to take several weeks to kick in as your dopamine receptors “reset.” That process can take months and may only partially improve.
is this still from Tramadol augmentation?
Augmentation?
Augmentation? I'm guessing yes.
Can’t xope
My PCP just increased Ropinirole. I’m pretty sure I’m in augmentation 
