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@kdunn44
@missjb
Hey! I’m new to this forum! I have been suffering from RLS for over 40 years! It started with my first pregnancy. My OB doctor thought I was having ‘some sort of seizures’ in my legs! It was horrible. I had what people describe as the ‘budgies’ - creepy, crawly, uncomfortable feelings in my legs (thighs). Then the uncontrollable jumping legs. It was not just an ‘urge’ to move my legs; mine were violently jumping! When I would drive my car to work, they would jump and jerk and slam right into the steering wheel!! At night, I would lay on the couch and my husband would rub my legs to try and give me some relief. He was so kind and patient rubbing my legs. And then the violent jerking would start. He would say, ‘hold your legs still so I can rub them’!! I would say, ‘I can’t keep them still’!! It was horrible! I ended up taking Ambien for sleep! That would knock me out and I didn’t care if they jumped or it!! My husband would tell me the next morning that they jumped all night! Needless to say, I have been sleep-deprived for decades! My career was a Medical Transcriptionist. I worked in a Neurological office for about 6 years. One of the neurologists in the office started me on low dose opioids in the 90’s (Vicodin). He said there were studies that proved it helped RLS greatly. It did! The Vicodin (plus Phenergan that I had to take to quell the nausea from the Vicodin) finally calmed my legs and allowed me to sleep! It was a miracle! So, I was on Vicodin (1/2 tablet) and Phenergan for well over a decade. Then it got where my legs were getting really ‘busy’ in the evenings, so I bumped the Vicodin up to a whole tablet. During this time, I was also soaking in very hot tub baths trying to get relief! That helped for awhile. Then, my doc added Clonazepam to the regime. She said it was used off-label to treat RLS. The combination of the Vicodin plus Phenergan, plus Clonazepam, plus hot baths did seem to help for awhile! Then I would wake up in the middle of the night and they would be jumping so bad that I couldn’t get back to sleep! So, I would wrap a heating pad around each leg and go back to sleep! It was all so frustrating! Went on like this for 30 years. Then my doctor recommended trying Gabapentin. I started at 300 mg and it was a miracle! I couldn’t believe they were my legs. They were calm! I could sleep! Lasted about 6 months. Doctor upped the dose to 600 mg. That worked a good while - until it didn’t. All the time, I’m constantly researching about RLS, looking for new treatments! When I saw an article on a new, non-pharmaceutical treatment, I was intrigued. After reading reviews on the TOMAC Nidra bands, I made an appt to see my neurologist immediately! She had never heard of it! I told her Medicare covered it and gave her the codes to use to get it approved! It took about 5 weeks, but her nurse got me approved! I was so hopeful and so excited to try it! I have been using the Nidra bands since April and I must say they are little miracle wraps! They work! I am shocked, yet so very pleased! My legs feel normal! And if I do start getting ‘busy legs’, I put the pads on immediately and them then the jumping stops and I can sleep through the night! No more scalding tub baths, no more opioids, Gabapentin has gone from a max of 1200 down to 300! I am thrilled!! No more budgies, pain, cramps, jumping. . . I am 70-years old and so grateful I have been given some normalcy back in my life! Thank you Noctrix for the Nidra pads! Life is good again! And once I do a 30 minute session, sometimes my legs stay calm for 6-7 days. I don’t really understand why, but I’m very grateful. I do hope other folks are having just as much success!!
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@kdunn44 Thank you, kdunn44, for posting your experience and about your success. Because my RLS symptoms are "different" than descriptions of RLS on the internet, I have been curious what exact symptoms others on the forum have.
I found it very interesting to compare notes with you. I appreciate the detail of your descriptions.
My RLS is also in my thighs--for years only the left and when the right joined in, the left (for the most part) has still been the more troublesome. Then, about 8 years ago, it start to extend up to the top of my left buttock.
Interestingly, when I depended on my massager for relief (before medication and before Nidra), if I held my massager on my right leg (which wasn't hurting), it could stop the pain in my left leg.
I should have picked up, by that, that my experience was caused by something neurological. But, it just "felt" muscular, so I repeated physical therapy, over and over, to no avail (for years).
My RLS never involved jerking or twitching until the last few years. Even now, it's rare and only tiny twitches. It feels more like the "jerk" is stuck and can't get out--so the sensation is an aching pain--that rapidly builds in intensity. I have always described my RLS as painful, even when I didn't know it was RLS.
You and I both started the Nidra last April. Initially, it just worked on the episode I was having. Over time, through "neuromodulation," I started having no symptoms at night. (Yes, miraculous !!!) I think my longest stretch without symptoms at night has been about 9 or 10 weeks. (Still, I faithfully put the bands on, every night).
I do have occasional RLS, laying on the sofa, watching TV in the evening. I tend to get up and walk for these (because I'm still wearing long pants and don't want to be bothered to change to put on my Nidra.)
I take subloxone (a drug used like methadone for people with addiction problems) in a very low dose. It provides a small amount of opioid and it's helpful. I tried to lower the dose after Nidra started working so well, but RLS came back--not terribly, but after having no symptoms at night, I've become spoiled and intolerant of waking in pain.
For me the gabapentin and pregabalin routes had no effect. It is interesting how something works for some of us, but not others.
Before medication/Nidra, I went through the heating pads as well as ice packs. For a while, I had a cooler next to my bed. It was vital when we bought a house that it always had soaking bathtub for hot baths.
Like me, it sounds like your doctor never put you on a dopamine agonist drug. We were both lucky to avoid this!
Like me, you discovered Nidra through your own research. But, my neurologist, is a RLS specialist, so he knew about it. Clever that you knew the correct code.
Another RLS neurologist (Dr Aggarwal in Pittsburgh) suggested I try turning on the Nidra when I first get into bed--before any symptoms--but now that I have few symptoms I don't want to bother with that. Maybe, it would jump start the neuromodulation for some people, which I think I am past needing. But, it is interesting. Next time I communicate with my own neurologist, I'll ask him what he think about this.
Both your story and my story involve worsening symptoms over time. I hope our medication and Nidra combination will work for the rest of our lives. Please let's stay in contact through this forum. It is so great to finally have a Nidra-buddy who is having success similar to my own.