Trying the new NIDRA therapy
I have had RLS for more than 20 years, it started in my early 50s. I have tried probably about a dozen different medications.
Currently I'm on mirapex .5 mg ( I started on 1 mg), which I have been on for several years. I have had issues with augmentation on both requip and mirapex, which is just awful. My RLS , now causing severe insomnia, has gotten to the point where my Sleep Dr. put me on Oxycodone when needed, which has been extremely helpful.
Last month he wanted me to try the new NIDRA therapy which is a battery operated band that you put around your leg under your knee. The purpose is to stimulate a nerve that makes your leg think it is moving. It is easy to use - but the battery life is short. It turns off after 30 min, but can be used for an additional 30 min before it has to be recharged.
So far, I am still evaluating its effectiveness. I have found that when my RLS just starts to act up, it will help to decrease my symptoms. But when my Symptoms are more severe, and I am completely tensed up because of them, it doesn't seem to be as effective.
I did use it on a 3 hour flight last week for an hour - and it did seem to help. But then it had to be charged, but there was nowhere to charge it on the flight. So, what I am finding is that it can be effective for light to moderate symptoms, but maybe not for severe symptoms. And it might be just an adjunct to your other therapies. The NIDRA therapy system has a great support team to help you get started, and it is covered by Medicare.
Very discouraging news about Nidra! I am experimenting with the LAST of several recommended RLS medications for chronic, severe RLS, without much luck. So I was really hoping that Nidra was going to be the savior I was looking for.
However, if you have to control your RLS on long flights, my current combination of Lyrica and Methadone is the answer! Incredible how that recipe does not control my RLS on the ground, but is the key to calm up in the air - on very long day or evening flights!
How interesting that that combination works in the air, but not on the ground. Do you think your body position might be a factor -- sleeping on a bed versus sitting up on a plane? - Lori (Team Member)
I have not heard anything about extra batteries. I don't think that is possible right now. I think maybe the NIDRA therapy system is onto something that may improve over time with feedback from patients. I was told there are about 1000 patients using it right now, but only in certain states, I think. It requires a Dr who has been approved to prescribe it. The trick might be to try and use it when symptoms are just starting to possibly prevent more severe symptoms - but the short battery life makes it hard to continue at longer intervals.
That all makes sense, especially the idea that it might improve with time. Thanks again! - Lori (Team Member)
Hi
. Thank you so much for sharing your experience with NIDRA therapy. I saw that it was recently approved by the FDA and I was really hoping someone would offer some insight here. That's such a short battery life. I hope they improve it over time. Is it possible to buy extra batteries or are they too hard to replace. How interesting that it was so much less effective with severe symptoms. I hope you figure out a good combination of treatments that brings you even more relief. Sending the best of all wishes your way. - Lori (Team Member)
