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Severe RLS solved for me
The following is a true story without embellishment or exaggeration.
I’ve had RLS for 35 years now. It got worse over time and is very severe now at the age 69. It is the worst RLS symptoms my sleep doctor has seen being in the top 1% of severity from here experience.
In the years preceding finding my current sleep doctor I was getting three to four hours of sleep a night. I tried every RLS medication out there (with one exception explained below). Gabapetine and Requip were zero percent effective. OTC pain meds like aspirin, acetaminophen and ibuprofen did nothing. Tylenol PM and others like this wired my eyes open. High doses of magnesium also did nothing. I was tested for low iron. This was normal but I took iron supplements just the same. I then found a doctor who prescribed Pramipexole. I started out at .375 mg and got enough relief to sleep about six hours per night for four or five nights a week. What a relief to get some restful sleep after years of struggle and misery. I shelved my plans for moving to Oregon for doctor assisted suicide. Yes, it was honestly that bad for me.
Over the next years the Pramipexole worked well but I had to gradually increase the dosage as augmentation set in Eventually I was up to 1 mg/day (taking eight .125 mg tablets) but the effectiveness had decreased significantly. Taking even higher doses was having negative side effects with no RLS reduction benefits. At this point I was back to four hours of restless sleep per night. I stated augmenting the Pramipexole with several ounces of alcohol at around midnight to 1AM just so I could pass out and get some sleep. This continued on for about another year with varying effectiveness. The trajectory for this regime was bad, obviously not a good long term solution. Completely sleep deprived, drinking on a regular basis, legs thrashing when I laid down, pacing endlessly most of the night to get relief, only to fall into a fitful sleep at two, three or four o’clock in the morning, sometimes seeing the sun rise before collapsing into exhaustion. Emotionally I was a wreck, would break out crying in despair, no sex life or relationship with my wife. I started once again planning my move to Oregon for physician assisted suicide. I could no longer live like this.
Enter the solution for me. Miraculously I found a sleep doctor/specialist who dedicates her professional life to this affliction. During my initial visit she took an hour and a half listening to my RLS journey and asking probative questions. As noted above I had tried everything and I was at the end of my rope. Doing due diligence she ordered the normal tests, a sleep study (which was an abysmal failure since I didn’t sleep) and started me on the normal medication regimen (Requip, Pramepexole, Gabapentin, magnesium etc., etc..) all to verify that nothing worked. Finally, as the medications of last resort, she prescribed Neupro 2mg/24 hour patch, 5 mg methadone and 300 mg of Gabapentin daily. The patch stays on for 24 hours and the Methadone and Gabapentin are taken after dinner. After some trial and error the dosages were increased to 3mg patch, 10mg Methadone, 600 mg Gabapentin and daily magnesium citrate. The results were nothing short of miraculous. In my 35 years of having this horrible affliction I’ve never this much relief from RLS. Things are still not perfect I can finally lead a near normal life and get a decent nights sleep most nights. Thank god I found this doctor or I would not be here today.
Important things that are now part of my regimen and contribute to the effectiveness of the drug protocol.
1. I exercise on a daily basis. I lost 10% of my body weight through diet and exercise bringing my weight down into the normal range for my height and physical build. This helped.
2. I have dinner early and do not over eat. Not having a full stomach at bedtime makes a difference.
3. I take powdered fiber with lots of water at breakfast and dinner to control the constipation from the Methadone.
I hope this post and my contribution here can help someone else to get relief from this horrible affliction.
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@slkanowitz
In the last year have switched my antidepressant twice and each time I have experienced horrible restless legs getting 2-3 asleep at night for at least 4 weeks or more. So it’s a lesson learned.
Other meds can increase the problem to crazy levels.
@lauriefeenstra
My RLS doctor warned me that "anti-drugs" --like antidepressants, antianxiety, anti-nausea, anti-pyschotics, antihistamines--can make RLS symptoms worse. Fortunately, I don't need to take any of these at present. However, I just took a course of an antibiotic and had my RLS flare into "unbearable" one night last week (just when my RLS had been so well-controlled). Antibiotics aren't listed as something someone with RLS should use with caution (and if an antibiotic is needed--it should be taken) but it is does have "anti" in the drug classification name. So, I don't know... ???Anyone else find antibiotics made your RLS worse?RLS is certainly challenging with a mine-field of considerations--even after finding an effective medication Anyway, lauriefeenstra, you are absolutely correct in that other drugs can increase the problem to crazy levels!
@lauriefeenstra Have you tried pramipexole for your RLS (prescription)
I've tried many things for my RLS, and it is the only thing that eases the misery, and let's me get a reasonable amount of sleep.
Hi rjjb, The problems (plural) with Pramipexole is that as a dopamine angonist drug it carries the risks of both augmentation and a loss of inhibition. Augmentation is a very serious, very very unpleasant experience. Evidently in the UK (England etc) they have now banned prescribing dopamine agonists drugs for restless leg syndrome. Legally, it can no longer be prescribed to treat restless leg. The reason for the banning is that it was discovered drugs like pramipexole can causes (and has caused) disinhibition in a significant number of people involving things like sexual behaviors. On one of our RLS threads someone here in the USA wrote of experiencing this as well as compulsively spending money in an unwise manner. In the USA, dopamine agonist drugs were (past-tense) the recommended "go-to" drugs for RLS. The previous set of RLS Guidelines said they should be used as the first drug of choice to treat RLS. The NEW (2025) guidelines no longer make that recommendation. It puts people already on dopamine agonist drugs in sort of no-man's-land because as rjjb attests, these drugs work very well (until they don't). The problem of augmentation can come on at any point--days, weeks, months, years or decades after starting to take a dopamine agonist drug. "Restless leg syndrome augmentation" is easily googled and the RLS Foundation website has a very thorough, well-written description. Everyone with RLS needs to be aware of the perils augmentation presents. What a miserable, horrible experience it is! Also, it is difficult to treat. Please also google "dopamine agonists banned in the UK for restless leg." The fact that it causes lack of (sexual) inhibition is something I've only learned recently, but there are news articles about this. Although the RLS Guidelines for Treatment have been changed, not all doctors are aware of this change. Let the "buyer be aware." AND, importantly, there are other drugs that treat RLS effectively. I didn't have any symptoms last night, thanks to buprenorphine. I do not dispute that currently pramipexole is working for rjjb, but in my opinion the risks of that drug clearly outweigh the benefits. Although it works for you now, rjjb, education yourself so if augmentation starts you will recognize what is happening to you. I wish the best for you, rjjb.
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1 Reaction@missjb Please tell me about buprenorphine and the amount you are taking.
I couldn't post an answer to rjjb's question last night so I messaged privately with my response...
If anyone else is interested:Buprenorphine is a mild opioid, commonly used to treat drug addiction (like methadone is used) and is effective for RLS in a very low dose (much smaller dose than a former drug addict needs to take). I think .33 mg is the standard dosage. I started with that, but needed to increase last year to .5 mg after I had surgery last year. It is a medication that needs to be held in the mouth to dissolve.
It sounds like rjjb might be considering changing from pramipexole to another medication. I don't know anything from personal experience about how this should be done, but I've read postings that imply there needs to be a "weaning" process when stopping a dopamine agonist drug.
Could someone (or several of you) with actual experience who stopped taking a dopamine agonist please share how this was done and how it worked out? I know there was a posting about the weaning process not being slow enough and this resulted in an inability to sleep.
My sense is that a dopamine agonist can't be stopped abruptly. I think it would be important for you all (former takers of dopamine agonists) to share if this is true. Thank you so much!
I know the suffering but not as many years or that extent of lack of sleep. I tried all of those except the meds in your last part. I have OSA despite always been a normal weight. I still take gabapentin 3x daily along with a high dose seizure med that keeps me asleep most nights. But until I tried Healthy Feet by Terry that I bought on amazon nothing helped consistently. I’m just taking one capsule every other night now to maintain and it’s been the RLS relief I’ve always sought