Movement Disorder Specialist--Really?
Posted: Sun Aug 02, 2020 7:44 pm
Two years ago in early 2018 I had just gone through a "self withdrawal" from Requip after severe augmentation. I was then able to see a local Neurologist who was pretty familiar with RLS. Through him I briefly tried Lyrica with poor results. Then we tried Gabapentin which worked pretty well but he suggested Horizant and I tried it, at my own great expense, for several months before getting the local VA to provide it. After a few more months on Horizant it seemed to me that the Gabapentin had actually worked better and I switched back to that. It's worked very well ever since. When it doesn't work so well I vape cannabis flower which "does the trick".
Within a year my Neurologist left the area and I've tried unsuccessfully to find another Neuro who seems to understand RLS. Sadly none seem to exist in my local area. At recent VA annual the doc asked me about my Gaba and how it's working. She knows much less than I about RLS and I asked her how we would handle, down the road at some point, the Gaba becoming less and less effective as I am uncomfortable upping my dose in that event. She told me she'd refer me to a regional VA facility specialist and one would call me.
WOW! Excited about that and a week or so ago I received a call from a "Movement Disorder" physician. He asked me to describe my experience with RLS so I gave him history of many years with no relief, then Carbidopa-Levadopa up to augmentation, then VA prescribed Requip for a couple of years til augmentation, then my withdrawal and finally finding the Neuro and being on Gaba. I told him my concerns about Gaba becoming less effective. His first comment was about small doses of opioids and methadone! Man was I surprised as I've heard so much about how difficult/impossible it is to find someone to go the opioid route. I thanked him for that option, if it would become necessary. THEN he told me of another drug that I could try.......Requip XL. I asked him about it and he said it is a time release version of Requip just like Horizant is a time release version of Gabapentin. I take 1800mg of Gaba daily in the evening. He told me that if I feel I need more then I could up the dose to 2400. He told me he'd check back with me in a year and if I had questions or problems before then I could call him.
So I was very excited to find this 'specialist' but when he suggested Requip XL I felt like he hadn't heard anything I had said about being on Requip and augmenting on it. From what I read online, Requip XL IS NOT used for RLS, just Parkinson's. I like what he said about the opioids but question that he would suggest the XL.
My concerns......Am I correct about both Requips being as "nasty" as I think? Can I expect that my Gaba will cease to be effective in the future? Will the next VA doc in the future be as willing to provide an opioid as this person seems to be.
Jim
Within a year my Neurologist left the area and I've tried unsuccessfully to find another Neuro who seems to understand RLS. Sadly none seem to exist in my local area. At recent VA annual the doc asked me about my Gaba and how it's working. She knows much less than I about RLS and I asked her how we would handle, down the road at some point, the Gaba becoming less and less effective as I am uncomfortable upping my dose in that event. She told me she'd refer me to a regional VA facility specialist and one would call me.
WOW! Excited about that and a week or so ago I received a call from a "Movement Disorder" physician. He asked me to describe my experience with RLS so I gave him history of many years with no relief, then Carbidopa-Levadopa up to augmentation, then VA prescribed Requip for a couple of years til augmentation, then my withdrawal and finally finding the Neuro and being on Gaba. I told him my concerns about Gaba becoming less effective. His first comment was about small doses of opioids and methadone! Man was I surprised as I've heard so much about how difficult/impossible it is to find someone to go the opioid route. I thanked him for that option, if it would become necessary. THEN he told me of another drug that I could try.......Requip XL. I asked him about it and he said it is a time release version of Requip just like Horizant is a time release version of Gabapentin. I take 1800mg of Gaba daily in the evening. He told me that if I feel I need more then I could up the dose to 2400. He told me he'd check back with me in a year and if I had questions or problems before then I could call him.
So I was very excited to find this 'specialist' but when he suggested Requip XL I felt like he hadn't heard anything I had said about being on Requip and augmenting on it. From what I read online, Requip XL IS NOT used for RLS, just Parkinson's. I like what he said about the opioids but question that he would suggest the XL.
My concerns......Am I correct about both Requips being as "nasty" as I think? Can I expect that my Gaba will cease to be effective in the future? Will the next VA doc in the future be as willing to provide an opioid as this person seems to be.
Jim