New to Discussion Board

[LaurieG]

Hi! I'm Laurie and I have been dealing with RLS/PLMD for about 38 years now. I began taking Clonazapam, .5 mg about 22 years ago for symptoms. I now take about the same amount of Clonazapam or more if needed on a nightly basis, plus .125mg of Pramiprexole (Mirapex). These meds have worked fairly well for the most part. A concern I have now is that I have resumed giving urine samples for Benzodiazepines (Clonazapam) after the Covid years with a new doctor and they are not finding any traces of it in my urine. I've had two tests now where the results came back negative. Actually three, because one went on for further confirmation and no trace of Benzo was found. I have seen people online say that they have had this experience. I don't know if it's me or the test...anyone have advice on that? I am very afraid that no one will prescribe it for me and I DO take it, EVERY NIGHT!!

Because the Clonazapam has become an issue with the testing and because I've been on it for so long, my new doc and my sleep doc have suggested I wean off of it with the use of Pregabalin (Lyrica). I began the weaning process a couple nights ago. The second night was terrifying because I couldn't breathe (I use a CPAP). I read there are breathing complications with this drug and they probably started me off on too high a dose (75mg). In any case, I feel like I'm between a rock and a hard place with the meds. My RLS is so severe that I can't sleep without medication. Some of the things that help me are baths and massages when I'm having a tough time, even with medicine.

Thanks for reading! I've been a member a long time but I am finally reaching out on this message board for help! Hopefully I can help others.

[Rustsmith]

LaurieG, I am not an expert on benzo detection testing, but I know that the urine tests to detect opioids are often not sensitive enough the doses used to treat RLS. But I did find this document about benzo testing published by the Univ. of Rochester that indicates that the tests are not highly sensitive when it comes to detecting clonzepam. I have also found that many doctors tend to take these test results as gospel and do not understand the concept of false negative results. https://www.urmc.rochester.edu/encyclop ... pine_urine

I got accused of not taking my methadone as prescribed because of a false negative. That has caused me all sorts of problems ever since.

[badnights]

Hi LaurieG, how's the taper going? Clonazepam can be dreadfully hard to get off of. I hope things are going well. Has the breathing issue sorted itself out?