Search found 275 matches

by Stainless
Wed Apr 06, 2022 2:32 pm
Forum: Prescription Medications
Topic: Has anyone tried buprenorphine?
Replies: 54
Views: 10898

Has anyone tried buprenorphine?

BBC has a video on RLS today. Most is common knowledge on this website. But one woman who described severe RLS like I suffer from, says in the end she got complete relief from buprenorphine. I looked it up and found it similar to methadone which I doubt a doctor in Florida would prescribe. Just curi...
by Stainless
Fri Apr 01, 2022 2:54 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: %Saturation running high after supplemental iron. problem? Solution?
Replies: 8
Views: 5742

Re: %Saturation running high after supplemental iron. problem? Solution?

My most recent iron checks show Ferritin at 135 and %SAT at 41. My GP keeps ordering an iron profile that shows iron at 122 ug/dL, binding of 296 and UIBC of 174 mg/dL. I took oral iron religiously for over a year at the recommended levels and with C. I hated it. Like giving a kid caster oil. It bro...
by Stainless
Thu Mar 31, 2022 10:04 am
Forum: Prescription Medications
Topic: How are you doing on Horizant?
Replies: 5
Views: 2375

Re: How are you doing on Horizant?

Thx for the replies. I'm currently on 2 mg Clonazepam and 300 mg pregabalin. I have some ropinirole I was going to try occasionally but a seminar by the Harvard doctor made me think going on and off was not a good idea. So I'm thinking of taking 1/2 mg. a day and see how that goes. My doctor doesn't...
by Stainless
Wed Mar 30, 2022 3:36 pm
Forum: Prescription Medications
Topic: How are you doing on Horizant?
Replies: 5
Views: 2375

How are you doing on Horizant?

I see generic Horizant will not be available until after June 10, 2029. It's about the only drug I've not tried for RLS, mostly because of cost but also I thought it was a patch, which does not appeal to me since I'm in the water all the time. I'm not sure how much my Medicare drug plan would cover,...
by Stainless
Sat Mar 26, 2022 5:06 pm
Forum: Prescription Medications
Topic: Clonazepam CAUSING/aggravating RLS ????
Replies: 2
Views: 1643

Re: Clonazepam CAUSING/aggravating RLS ????

I've been on Clonazepam for over 25 years. I have lifelong RLS. Took a year off Clonazepam eight years ago and it was a disaster. My doctor advised me to go back on after the worst year of my life on DAs. After that Clonazepam no longer gave me the undisturbed, RLS pain free sleep. I always thrashed...
by Stainless
Tue Mar 15, 2022 3:30 pm
Forum: Prescription Medications
Topic: Quality Care Centers
Replies: 10
Views: 1925

Re: Quality Care Centers

I am really looking for a plan, not a prescription I can't get filled. Or give IV iron a try. I'd stay somewhere for a week or whatever to give it a try. At 65 I'm very worried about what this will be like when I'm 80. My neurologist will prescribe anything he is allowed to in Florida. I saw a secon...
by Stainless
Sun Mar 13, 2022 8:11 pm
Forum: Prescription Medications
Topic: Quality Care Centers
Replies: 10
Views: 1925

Re: Quality Care Centers

Steve, thanks for the leads. That's exactly what I'm looking for. Badnights I have been prescribed Tylenol with Codeine and it makes me so constipated I can't imagine opioids but I have no experience with Methadone, etc. Living in Florida with our state government, I doubt very seriously I could get...
by Stainless
Fri Mar 11, 2022 3:45 pm
Forum: Prescription Medications
Topic: Quality Care Centers
Replies: 10
Views: 1925

Re: Quality Care Centers

Thank you badnights but after 65 years in Florida, I think I'll finish up here. I live in Paradise in spite of the crazies. I guess I'll try Atlanta next but I read they don't do IV Iron, and I think that I think is my last shot at real relief. And that is a real shot in the dark. Right now I'm tryi...
by Stainless
Mon Mar 07, 2022 5:28 pm
Forum: Prescription Medications
Topic: Quality Care Centers
Replies: 10
Views: 1925

Quality Care Centers

I finally got in a position where I could drive 2 days from Florida to Baltimore and see a Quality Care Center specialist at John Hopkins. They are no longer accepting out of state patients because of prescriptions. I have searched Florida, spent thousands and found nothing. I've seen 3 neurologists...
by Stainless
Thu Feb 10, 2022 12:06 am
Forum: Prescription Medications
Topic: Clonazepam and Doctors
Replies: 42
Views: 14158

Re: Clonazepam and Doctors

I hope you find a way out. Let us know.
by Stainless
Fri Dec 17, 2021 8:06 pm
Forum: Prescription Medications
Topic: Carbidopa-Levodopa
Replies: 6
Views: 2185

Re: Carbidopa-Levodopa

My experience of taking C-L 1 day was 2 days of borderline hallucinations. Not like being sedated or high but like an out of body experience. I can’t even remember how the RLS reacted. I got off Clonazepam over 6 months using Gabapentin which was hell. Maybe my sights were too high but I did not fee...
by Stainless
Tue Nov 16, 2021 6:22 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Iron supplementation Timimg
Replies: 7
Views: 5503

Re: Iron supplementation Timimg

I religiously took the recommended Iron and C for well over a year. Never heard of the evening thing. I found it hard on my empty stomach. I saw no improvement of symptoms and (unscientific) had less after I quit. I would have a hard time convincing myself to do it again.
by Stainless
Tue Nov 16, 2021 6:03 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: I have reduced my symptoms by 90% and couldn't be happier!
Replies: 4
Views: 5487

Re: I have reduced my symptoms by 90% and couldn't be happier!

Glad you are doing so well. We are the same age and I have had RLS since I was a kid. It went from a major annoyance (my whole life) to a painful daily ritual when I got off 2 mg Clonazepam and tried everything else ending up on Requip. It worked like a miracle until in a few when weeks it didn’t. M...
by Stainless
Fri Oct 15, 2021 10:10 pm
Forum: Physical Treatments
Topic: Exercise and RLS
Replies: 8
Views: 9662

Re: Exercise and RLS

I have recently found something that does work for me. I have been getting up in the middle of the night and walking around for decades but recently started doing squats every few steps as I make my way around the house. Once back in bed I seem to drift off relatively quickly. My main restlessness, ...
by Stainless
Sat Oct 02, 2021 4:20 pm
Forum: Physical Treatments
Topic: Exercise and RLS
Replies: 8
Views: 9662

Re: Exercise and RLS

I was never a natural but ran 15 miles a week for over 30 years. When I retired I did elliptical and weight training. Now since COVID I have turned into a couch potato. It has gotten worse over the long term but I never thought working out changed the RLS.