I'm in the U.S. Last Oct, I attended the RLS Foundation's annual patient conference in Baltimore, Maryland. Speakers included many of the scientists mentioned in this forum - Berkowski, Earley, Buchfuhrer (also called Dr. B), and more. At that time, I was taking pramipexole ER. All the patients begged me to stop because they all had experienced augmentation. At first, I said: "I know. I hear you. But it's working for me, and RLS is worse, so ... thanks but mind your own business."
By the end of the conference, however, I committed to stop. The scientists showed evidence that convinced me dopamine agonists (DA) can damage your brain when taken for RLS (rather than for Parkinson's Disease, for example), and sometimes, it's permanent or so "long term" it may seem permanent. Today, I'm completely off for one week after a short taper. It's been difficult mostly because of how it's affecting my mind. I'm depressed, anxious, irritable. I love playing guitar but haven't picked it up. I usually exercise and eat right and haven't been able to get off the couch. My husband found your website, and I've been reading a lot. Thank you for sharing. It helps to know I'm not alone.
To treat the RLS, I had an iron infusion, which I think saved me. I also take very small doses of gabapentin & opioid. It's amazing to me how ignorant doctors are about this illness. I'll check back in to let you know how it goes. I do believe the brain can heal ... I need to keep telling myself it's the medicine & withdrawal that is bringing these dark thoughts so I know they will get better. I'm going to exercise this morning and maybe pick up the guitar ... my best to all.
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Debra626
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Welcome to the forum. You will find lots of help, support and understanding here.
How much were you on? How long did you taper to get off it? How much gabapentin are you taking and how long have you been taking it? What opioid are you taking and how much? Are you still having RLS symptoms? What is your ferritin.
For depression and anxiety I recommend Wellbutrin or trazodone. Wellbutrin is the best one for depression but trazodone treats both depression and anxiety, These are the only 2 safe for RLS.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. 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. Keep a food diary to see if any food make your RLS worse.
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.
Hi Sue. I was on .750 pramipexole ER for a little over a year. My ferritin was 90 when I had the IV Iron; now it's over 400, but as Chris Earley taught us at the conference, the ferritin is only a surrogate test for what makes it to your brain. If the iron doesn't make it to your brain, it doesn't matter how high it is, and there's no easy test for that. I just know I waited about 10 weeks after my IV infusion to wean off the DA.
I love many of your ideas, especially the shower alternating hot/cold. I'll try that today. As far as my mental health, I'm going to try to push through without adding any other drugs. We'll see how it goes. Thanks for the reply!!
That's great that you were able to get an iron infusion and it worked so well to bring your ferritin up.
.750 pramipexole ER is is equivalent to taking .750 mg twice a day or 1.50 mg total. That is three times the maximum dose of .5 mg, Since the normal reduction is half of a .125 mg tablet every 2 weeks, although some do it in less time, that should have taken you 48 weeks at every 2 weeks or 24 weeks at every week or 12 weeks at reducing twice a week. Obviously you didn't take that long so although you didn't say so you must still be having a lot of RLS symptoms unless the opioid you are taking is controlling it but you said you are on a low dose.
Depending on the opioid you are taking and how often, you could also be going through mini withdrawals.
To help I really need the answers to my questions above. How much gabapentin are you taking and how long have you been taking it? What opioid are you taking and how much? Are you still having RLS symptoms?
Welcome Debra. Like you, we were all in denial about dopamine agonists. I'm so pleased you listened to the experts.I hope your brain continues to heal and that you find the right combination of meds to settle the RLS and the depression/anxiety.
Read up on DAWS (Dopamine Agonist Withdrawal Syndrome). You likely have it in spades given your fast taper. I tried Bupropion (Wellbutrin) for mine (I also did a fast taper, but from a much lower dose than you) but it made my RLS worse. But after 3 months being off pramipexole, the depresssion is much better. Just understanding why are feeling the way you do can be a big help, and knowing that it is temporary. I'm on a fairly low dose of buprenorphine (roughly .3mg a day - 1/6 of a 2mg suboxone strip). That is keeping my RLS completely in check and I think helps with other DAWS symptoms.
Take care & be patient with yourself! Things will get better, but as others have posted you have undergone quite a rapid withdrawal from the DA meds. Like stopping any other potent neuroleptic substance, your brain & body are going to take some time to get back to an even keel.
You may or may not be clinically depressed / anxious at this point, but if I were qualified I would say you definitely have the symptoms of those. I had a stretch of time where I felt depressed fairly recently - and my trusted therapist agreed that the symptoms were that of depression, yet he insisted I wasn't ... and he was correct! I ended up being diagnosed with hypothyroidism. After proper meds, I quickly went back to normal.
So with that in mind, do realize you're likely in a decreased dopamine phase - which will get better, especially with improved iron status working in the background. Meds as mentioned could help with that, but so could exercise, hobbies you're enjoying, etc. I suggest considering Ritalin / Adderall as well, those could help get your dopamine levels up for short periods so that you may function and feel more like your normal self as needed.
Therapy is another good option here, as you would be getting professional guidance from someone very familiar with your present state.
If you're not feeling it - which is completely understandable as dopamine is crucial for motivation, you could even put on some funny / inspiring / interesting things on the TV for instance. Socialize. Get out in the sunshine often, and walk/exercise only as much as you feel like!
One unapparent benefit here is if you choose to push yourself a bit, you will be signaling dopamine & building parts of your brain associated with discipline... Think of Forrest Gump while he had those knee braces on, once they came off we realized how what had been a temporary hindrance & handicap actually built legs that a cheetah would be envious of!
I know personally how tough it can be when we're stuck in the mud, but do realize that the dark thoughts and feelings are just and only those things. Your mind and body are quite upset & are going to pout and tantrum like kids - only your conscious mind is aware that you had just stopped supplementing dopamine.. indeed it would be more alarming if you weren't having these issues.
God bless you in your struggle. I am going to enjoy up to 3 months of a small 0.088mg Pramipexole for my restless legs symptoms that are in my lower back at night. It is working but I realise I HAVE to come off it by 3 months or Augmentation or worse will probably happen...
Thanks everyone. Today is better. Yesterday I did exercise; I did practice guitar. I cooked and took a shower. My hope was, and continues to be, that the IV iron will manage my RLS with a little help from gabapentin & opioid until I can let those go, too. To answer a few questions - my RLS was bad the 1st 3-4 days once I finished a 4 weeks taper off the pramipexole (maybe too fast for some, but what I needed to do). After about 4 days, the RLS got a tad better & the darker thoughts moved in. Right now, the RLS is background noise, and if I keep busy or distracted, manageable. The depression, anxiety, irritability all remain, but I'm pushing myself to act and reminding myself the light will return. I'm seeking out inspiration (watch Nyad on Netflix if you want to see perseverance in action!!) I want to believe the iron is the answer, so like Forrest Gump, I'm going to keep running until the braces fall off.
If you decide to come off the gabapentin you need to do so very slowly to avoid withdrawal effects. Reduce by 100 - 200 mg every 2 weeks. If you do so you will have no withdrawal effects.
Thank you. I think I'll be on the gaba for awhile as I'm not interested in doing any more chemical changes for awhile 😱until I reach some kind of equilibrium. Right now I just take 300 mg gaba with a backup 300 mg if needed. During this DA withdrawal, I've been able to go most days with just the 300 but some days, including tonight - just now, actually - I needed the second dose.
Another inspiring movie I watched today - Full Circle. Highly recommend. Anyone else have suggestions on feel-good movies or TV shows? Distraction is an excellent drug. Peace to all. Debra
Hi Debra, I only saw your post today. I sympathize with your feeling rather lethargic. I went off gabapentin and ropinerole starting last summer, while adding Lyrica gradually. Going off gabapebtin wasn't bad.I was completely off Ropinerole in November, but since starting to wean off, my nights have have had terrible RLS every 1-2 hours. I started snacking during the night, and I've gained 12 pounds. I also have no interest in exercise. Usually I walk, bike, go to the gym, and do yoga. I really have to force myself to do these things, and it was never that way! I'm still on Lyrica, but it's not helping my RLS at night. During the afternoons/evenings/car trips, things have improved greatly. I'm not sure if that's the Lyrica or just being off of Ropinerole after 25 years of augmentation creeping in.I'm hoping to be able to try an opioid late in April when I FINALLY can get in to see a neurologist! My best to you.
I hope you can get on an opioid, too. It's needed with all this augmentation. I feel strongly that DA breaks brains. It's awful. I'm doing a little better, and my RLS remains managed. I think what helped me the most, however, was IV iron. I encourage you to talk to the neurologist about it. As others have said, be gentle with yourself and when you can, push yourself. Exercise helps, and I've forced myself to do it in addition to practicing guitar. Some days, I just can't do either, but I really try hard to do the things I know will help me feel better. Take care. My best to you, too.
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