How can I get off Pramipexole and treat RLS without drugs

I recently switched from gabapentin to pramipexole due to mental side effects. 3 weeks on it and augmentation set in. My NP says stay on my feet and walk during day, try to sit or lay very little, take hot shower before bed, keep halving dose every week and it will be out of my system in a month. Dopamine agonists do not agree with me or help. I have tried THC oil (legal here) and CBD oil but nausea and diarrhea. I cannot spend all day on my feet for the rest of my life. Any suggestions besides exercise and heat?

[Madlegs1]

check out almost any of Sue Johnson's replies to many similar questions on this site.

It is a recurring concern.

Good luck.

[SueJohnson]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, 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, 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.

[Hidden in reply to SueJohnson]

Sue: Thanks for your information and suggestions. I have tried them all but my doctor is re-checking my iron and thyroid next week.

I spend all night every night walking, massaging, hot showers, heat, accupressure, reflexology. I can only hope that getting this darn pramipexole out of my body will allow me to eat without vomiting, diarrhea and constant nausea. The augmentation is much worse than the RLS was.

Thanks again.

[SueJohnson in reply to Hidden]

One more suggestion: When I used to get RLS I did the exercises for the leg involved as described under calf stretch and front thigh stretch at healthline.com/health/restl... In addition, I walked for about 3 to 4 minutes rolling the foot of the leg affected back and forth as I walked. It worked every time although I might wake up later at night and have to do them again. Actually on the calf stretch I didn't hold it for 20 seconds, but instead did the exercise for 20 - 30 times. I also pushed my heel back before I leaned forward. I, also moved my leg to each side when it is stretched. On the thigh stretch, I only held it for a few seconds, but then repeated it 6 - 10 times.

[cateagle in reply to SueJohnson]

This place is font of info and I thank you all for your dedication.

Dr Jo on YT has 10 exercises to do before bed for RLS. Haven't done them yet but am readying arsenal for weaning pramipexole. Also use product from chiro called Mira-flex-R3 that has capsicum in it. May be equivalent to Icy Hot. I use it when legs feel squirrelly - sort of a prodrome to RLS. I start at my feet and go all the way up the leg. I only have RL when I don't take the pramipexole, so my level of severity is not horrible.

[SueJohnson]

Medications that make restless legs worse: sedating antihistamines not all antihistamines, SSRI and SNRI antidepressants, tricyclic antidepressants, statins, diuretics, estrogen, lithium, melatonin,calcium blockers, calcium antagonists, steroids. central nervous system stimulants, dopamine antagonists, many but not all anti-nausea medicines, some but not all antacids, some but not all beta blockers, some but not all anti-hypertensives, some but not all blood thinners, some but not all anti-anxiety, many medicines that treat bipolar and other mental health problems, many medicines that treat epilepsy and many drugs that treat GERD. If you can list any medicines or OTC supplements, I can tell you whether they make RLS worse and perhaps can provide a safe substitute.

[SueJohnson]

Comprehensive Answer for Ferritin and iron

Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you may need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[marigold60]

I too had a nightmare coming off pramipexole. I found rubbing ibuprofen gel into the base of my spine helped. The sensations were also worse in my ankles and rubbing the gel there seemed to quieten them down for a while at night. I also found that sitting up really straight in the evening weirdly enough helped

[Hidden]

Thanks. Will consider.

[coldfeet7]

I stay away from sugars, especially near bedtime and stopped drinking any coffee now, even decaf coffee. That was hard to do as I love the flavor. Apparently coffee has a compound that blocks natural opiod receptors in the body, reducing the benefits from your body's own generated opiods.

I am remembering dreams again as my PLM has subsided somewhat.

[Typicallygaslit]

If you have diarrhoea, it may be because of an extreme sensitivity to serotonin. I am this way. Weirdly, dopamine agonists can set these problems off. It also means that a ton of other drugs don’t suit. I also don’t seem to tolerate gabapentin. I’m hoping to find an opiate that wouldn’t cause too many side effects, e.g. bupophrenine, but it’s going to be really difficult. Drug wise, it may be your only chance as well.

[Truthsword]

yes...try the suppliment GABA. I am going off Paramexol and i find if i stay on a very strict glutamine diet, the GABA 250mg. is effective. It seems to control the augmentation. I am sure this is my breakthrough.....after over 40 years of suffering. God bless you and help you.

[Truthsword]

Try the suppliment GABA along with the glutamine restricted diet its really helping me.

[Hidden in reply to Truthsword]

I have Celiac so no gluten. Will check the label on GABA. It is not well known here. Thanks.

[Leeze]

I find that Codeine phosphate (30/50 mgs x 2) helps a BIT with restless legs, as my GP suggested years ago. I tried Repripanol (?) when prescribed it years ago and quickly realised Augmentation was happening so I stopped it immediately I realised and will never go on anything like that again. I certainly find that RLS is usually worse when I have not taken any/enough exercise in the day, and have been sitting for too long. Exercise of some sort in the evening helps a bit too. It is strange how the RLS varies and I always try to work out why but the above are the only things I can find. How wonderful if a cure could be found! I suspect it is connected with spine/back issues...Good luck with yours - I really feel for you having it so badly all night. I felt it was also connected with hormones - but it seems not enough is known as yet! x

[Hidden in reply to Leeze]

Research is focusing on the pain centre in our brains, useless as they cannot read messages going in and out, only.see the electrical activity. I have dealt with Chronic Pain.for 22 years since a car accident but it was 8 years previous, Fibromyalgia brought RLS to visit. I am allergic to codeine but happy it is helping you. I am almost off the Pramipexole but cannot stop the nausea and bowel issues. Yes, exercise has been helping the RLS. I cannot go out due to staggering and balance issues but after 4 PM, I walk in my home for 5 minutes every 30 minutes until I do stretches. Reading all the replies and what helps each person tells me there must be more than one cause as treatments that work differ person to person. I, personally, would never recommend any dopamine agonist to anyone. Thank you for replying. Every bit of info helps.

[Leeze in reply to Hidden]

Oh I really do feel for you! You are having to cope with so much. I do wonder about the stomach issues, though - and wonder whether they are at all connected....? So many things can affect the bowel, as I know, too. I can only wish you all the best - which is sorely inadequate, I know!

[Hidden]

I recently went off Pramipexole( about 3 mo ths now. It was hell on wheels for the first 6 weeks and then started to settle. I am using a wireless TNS on both legs at night, preset to the mode that works for me, for a 30 minute session. I turn it on when I wake up with the RLS and I’m always asleep before it turns off now. Initially, I was using it 3-4 times a night, now it’s down to 1-2, I have not found it prevents the RLS from happening, because the max it runs is 60 minutes. I think it would have to be continuous and I haven’t found a unit that will run continuously, must be an FDA regulation. Not much else has been helpful.

[Hidden]

To update, I have been off pramipexole for 6 days completely. Had lots of bloodwork. Everything including iron was perfect except thyroid again so Hashimoto's is still active. Lower dose of Synthroid and retest in 8 weeks. I did sleep through one night. Still nauseated but bowel is back to normal. I see a Social Worker on Monday to try to access help to get groceries and someone to take me to medical appointments. Then see Nurse Practitioner on Thursday again to see what she has found for RLS as she is consulting another doctor. I will not put another pill in my mouth. Synthroid, clonazepam and acetamenophen. Might try the TENS suggestion but mine is not wireless. Stretches and still walking indoors. One night or day at a time. I wish I had a magic wand for all of us.

[Leeserann]

Hi,

I'm in the process of weaning off the pramipexole. I have a fully time job and a side hustle cleaning business. I was DREADING the weaning process as I have severe RLS with occasional-frequent day time breakthrough kicking. On day 6 of my first week of weaning (so that's going from 1.5 mg down to 1 mg) I was having severe day time breakthrough kicking. I felt like I was going to climb out of my skin and anticipating it getting progressively worse as the weaning process progressed. I decided to not drink coffee because it's a stimulant and more than 2/3rd of a cup makes me shake. It helps with focus and alertness but it also increases my kicking. I also use a lot of sugar in my coffee. I didn't drink the coffee and decided to stay away from the sugar as well. A long time ago, I noticed that sugar seemed to aggravate the RLS as well. The result? NO breakthrough kicking during the day and almost none at night! After day 3 of this my husband observed, "GEEZ, this is a thing, huh? You're not kicking even at night almost at all and you're taking a 1/3rd less of the medication? That's AMAZING!" Tomorrow, I will start phase 2 of the 3 phase weaning and reduce the pramipexold dose another 1/3rd for the next 2 weeks. Lord, willing, I'll see a continued control of the kicking. It made an incredible difference for me. I couldn't have imagined it would be so significant.