Restless Legs - Any suggestions as seen many doctors and medications

@3dogs Hi. My RLS has pretty much ruled my life since a child. I remember hearing my dads knees pop and crack as he walked up and down the hallway late night/early morning, as well as my earliest experiences with RLS in the 1970’s. Its been 50 or more years now. I am a retired nurse now. It was considered a phantom chronic condition. I was afraid to tell anyone about it. In 2005 I lied to my dr and wanted Ambien for sleeping issues. It worked well I also got a benzo for anxiety. I was able to sleep now. Then I got ill and was given dilaudid and norco for pain. I was OVER MEDICATED now. I actually had a sleep walking episode. I quit the ambien and narcotics. Benzos were enough. About 2014 i didnt want the benzos anymore. Oh my Lord!! Was i in the shock of my life. That RLS was back! I wasnt prepared for it. I did everything i could Lotions, supplements, I found the RLS FOUNDATION. It was a great tool for me. I tried Requip. It gave me tremors in my hands so I stopped it. This is when this opiate epidemic was in full swing. So, I told my dr i got hand tremors. He then said take more Prescription strength antihistamine.?!! RLS is still treated like the phantom condition. So I said my back hurt and could i get tramadol 2 tab BID. NOPE sorry tylenol doesnt work for me. Ive had RLS since a little kid. Tramadol is the least potent narcotic out there. I dont get ‘high’ at all but 2 tabs, 100mg at night stops the RLS last 10 yrs. Without tramadol i probaby would have killed myself 8 to 9 yrs ago. Tylenol doesnt work. All my labs are in normal ranges. I pay the membership fee to the Foundation because without them no one would be doing the research like they do.

@darkflowa23 Thanks for sharing your informative article
about RLS. I've had the problem for MANY years too.
It got so bad that I was walking the street at 2 or 3 in
the morning to get rid of that achy feeling. I was suffering
greatly from lack of sleep.
The only thing that gives me some relief is
pramipexole 0.75 mg (prescription). It gives me
enough sleep to make life livable.

@rjjb oh boy! your not afraid of augmentation? That scares me the most about those and these drugs. Eventually it will happen to me but I will do it until then. For right now the tramadol works. I wonder if there are studies about suicide and RLS related deaths or because it is labeled a sleep disturbance it falls thru the cracks? Twice I can remember wanting to do suicide due to the sleep depravation. 3.5 days. About 1 yr ago and before that about 8 yrs ago. Hallucinating and hearing things. Not fun.

3dogs,
Very sorry to hear of your struggles with RLS. I've had it for 35+ years and as I age it has gotten very severe. This is my original post on RLS and may be of interest and helpful to you.
https://connect.mayoclinic.org/discussion/severe-rls-solved-for-me/
Since this post I have given up on Gabapentin. It did nothing to relieve the RLS and caused hallucinations and bizarre dreams and night terrors.
I also had to stop Neupro (a dopamine agonist of last resort). It gives me rigid muscle syndrome, did not stop my RLS, and according to my sleep doctor the most recent medical data on dopamine agnostics points to serious negative long term side effects.
Now, the only thing that stops my RLS, the body pain associated with it and allows a near normal sleep pattern is 15 mg of Methadone daily. I hate having to be dependent on it but it is the only medication that allows me to lead a mostly normal life. Nothing else works for me. Without it I would most likely be dead from sleep deprivation induced suicide, and I don't say this lightly. Everyone's RLS journey is different. I'm not advocating Methadone or saying it is a solution for you, only saying it is one of the many tools available and for me it is a godsend.

@darkflowa23 Yes, there is research that tells us the suicide rate is higher for folks with RLS. Check out the medical literature through pubmed. Suicide risk is NO surprise to those of us have had it really, really "bad." Also, augmentation--caused by dopamine agonist drugs--is the biggest problem with RLS treatment right now. Physicians have had such a long time where these prescriptions have been the mainstay--most primary/internists haven't been enlightened about the problems with augmentation. Any RLS expert will tell RLS sufferers to avoid. ALSO, there is a RLS thread through "Mayo sleep" about RLS and Nidra. Check it out. This is a relatively new device (FDA approved and Medicare paid for) that you wear and it is very effective. The Noctrix Company (google it) has lots of information on its website--including how to get it (now available in most, but unfortunately not all, states) I've had mine since last April and have had zero symptoms in 7 of the last 8 days. The night I did have symptoms, the Nidra let me go make to sleep in a couple minutes. I still need medication--but when a posting starts out talking about suicide and ends with that kind of success--you all should be looking into this. For me: a miracle! The best to all of you!

@missjb
What is the cost if insurance doesn't cover this treatment?

@hirschho Hello:

I asked last April (when I first got my Nidra) what they cost--- out of curiosity--- and I was told $6,000 or $7,000. I can't remember which--but shocking!

Medical equipment!!!! What can I say! It is ALL overpriced!!! On the other hand, it was developed through medical research--which cost the company. This is not snake-oil. It is something that has been shown to work--a number of studies were published in the medical literature-- before it was ever available through prescription.

I learned about Nidra reading articles on pubmed and then I googled Noctrix for their phone number and cold-called the company--and I asked the exact same questions: can I buy one? what does it cost?

(They told me "no"---I'll explain why)

No one expects you to pay out-of-pocket. No more than anyone expects you to pay for a surgery or chemotherapy or other FDA approved medical intervention that is very expensive. That's why we have insurance.

The bands are well designed (except the velcro can be a bit touchy). They are comfortable. They work. That is the main thing: they work!

But, you want to have insurance pay for them (like we couldn't easily pay out-of-pocket for care in the ER or an in-patient hospital stay). Insurance is expected to be involved.

Noctrix has a list of doctors (by state) who prescribe the Nidra. I was told initially that sometimes there was a "hitch" if the ordering doctor didn't give the right historic information--and this could make insurance approval take longer. My doctor is a RLS expert (had ordered for other people previously) and between his ordering and my picking Nidra up was only 2 or 3 weeks. ("Only" a relative term when one isn't able to sleep very well).

My medicare and supplemental insurance paid 100% --which a Noctrix nurse told me (beforehand) I should expect.

The Noctrix company will tell you what to expect from your insurance before you ever have one ordered, if you call them.

I read a posting on a Mayo connect thread by someone whose Nidra was not paid for by Medicare 100%. My husband told me that Medicare plans can vary by state. All I know is that mine was.

Call Noctrix and talk to someone. (google their phone #. Look on their website. Noctrix.com)

Nidra requires a medical prescription (like medications that aren't OTC). You can't just buy one. It has to be ordered by a doctor. Then, Noctrix handles submitting the insurance claim. You just provide your insurance information along with the doctor's order.

Is it worth $7,000? Like all medical equipment, it is overpriced. Our whole medical system has major flaws. But, that is a whole other subject.

Is it worth calling and seeing what can be worked out with your insurance before you bother getting a doctor's order--absolutely!!!

I talked to the nicest, most caring nurse when I called. Not some sales rep. A nurse who understood my suffering and sincerely wanted to help. It wasn't available in my state, so I had to wait a year. Then, the Noctrix Company actually emailed me as a follow up and told me I could get one. That said a lot to me. A year later, out-of-the-blue, I get an email from Noctrix. They kept my email for a whole year and remembered my need. I felt like a patient and not a "customer."

That is one other caveat---The Noctrix Company needs support people in your state before you can get one. Most states are now covered, but not all. I had to wait a year because my state wasn't covered. New Mexico someone posted still isn't.

If you look on the Noctrix website you can see a map of which states aren't ready yet.

I only write about Nidra because it has helped me and I want others with RLS to have the same help...

RLS stole 15 years of my life and gave me insomnia and made me realize death was better than the life I was living.

Appropriate medication AND the Nidra-- in combination-- has given me 7 symptom free nights in the last 8. Plus, it relieved my RLS in a couple minutes the night I needed to turn it on. No wonder I rave about it !!!

I applaud you for expressing interest.

Best to you!

I've had RLS for well over 30 years. Had been taking gabapentin 300 mg, then upped it to 600 and eventually to 1200. Then my doc said to also take pramipexole. Not crazy about more meds but had no choice. Started with 1 pill (forget the dosage) then went to 2 then 3 then 4. So 4 gabapentin and 4 pramipexole, and still had symptoms but at least somewhat controllable. Then I started seeing a sleep neurologist who told me about augmentation. That was why I had to keep going up in dosage and that eventually it would make it worse. So I reduced and eliminated the pramipexole, which was hard to do because of the addiction and withdrawal. After getting off but still on gaba, it was no worse than the 4 pramipexole I was taking with the gaba. But still had those creepy crawling things and need to get up and walk at night. So she suggested pregabalin instead of gaba, and using a substitution formula ended up taking 300 mg of pregabalin. and in addition taking same Vitron-C iron supplement to get my iron above 75 which it did. Stayed on this for 6 months but still not happy with the results. I felt confused in the morning from all this medication and worried about my eyesight so I decided to go cold turkey and get off everything except the iron supplement. A month of bad withdrawal, nausea, sleeplessness, diarrhea etc. But I did get off and then started back up slowly as the RLS was still bad. But got to a point where 75-100 pregabalin was effective enough with nighttime walks. Then I also heard about Magnesium helping and am now taking that and my RLS is now manageable with only occasional need for night walks. Nothing in the evening and able to sleep with only manageable disruption (don't know why but when I get the start of some symptoms I can sleep on my stomach with legs hanging over end of the bed which relives it after a while and can get back to sleep).

My neurologist put in for the Nidra device 6 months ago but insurance initially declined and they resubmitted. Have no heard anything since. Would this be effective enough to get off the pregabalin?

So in summary, 100 mg pregabalin, with iron supplement and magnesium is pretty good and hoping to try the nidra device