Search found 1152 matches

by stjohnh
Thu Jan 14, 2021 2:05 am
Forum: Just Joined?
Topic: New member seeking advice
Replies: 7
Views: 136

Re: New member seeking advice

Betty's comment about urge-to-move is important, and yes, if you have RLS, when the urge-to-move makes it's appearance, it is an IRRESISTABLE urge-to-move. It cannot be willed away, and the only relief comes from getting up and moving your feet, and relief comes QUICKLY, like a couple of seconds... ...
by stjohnh
Wed Jan 13, 2021 2:02 pm
Forum: Just Joined?
Topic: going "cold turkey"
Replies: 22
Views: 499

Re: going "cold turkey"

Your ferritin puts you out of the IV Iron infusion guidelines. This doesn't mean IV Iron wouldn't help, just that it is unlikely you can find a doc that will prescribe IV iron for fear of iron toxicity. Ferritin is a moderately good test for BLOOD iron, but a poor test for total body iron, and a wor...
by stjohnh
Wed Jan 13, 2021 1:46 pm
Forum: Just Joined?
Topic: New member seeking advice
Replies: 7
Views: 136

Re: New member seeking advice

Welcome domestictraveler, Sorry you are having troubles, and I hope we can help. Firstly, RLS is orinarily at its worst about the time you get into bed. It does not cause you to wake up after going to sleep (mostly). It ordinarily does not cause pain. It oridinarily gets better, not worse as the nig...
by stjohnh
Tue Jan 12, 2021 1:57 am
Forum: Physical Treatments
Topic: Vibrating Platform
Replies: 5
Views: 90

Re: Vibrating Platform

I haven't, but it reminds me of the Relaxis pad, a vibrating pad that actually got FDA approval for treatment of RLS. Unfortunately it also was expensive, and Medcare and insurance companies would not cover it. Several of our forum members purchased one, and, as I recall, it provided a little relief...
by stjohnh
Mon Jan 11, 2021 1:56 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Medical Marijuana in non-recreational US states
Replies: 12
Views: 975

Re: Medical Marijuana in non-recreational US states

Same for me in California, cheaper and more convenient to buy "recreational" and pay the tax than to have to go see the "pot doc" yearly and get the medical certificate. Even cheaper is to ask my daughter to get it from her dealer, but I would rather pay the extra amount to have "California state ce...
by stjohnh
Tue Jan 05, 2021 1:06 am
Forum: Just Joined?
Topic: Augmented
Replies: 3
Views: 90

Re: Augmented

Steve gave it to you straight. Unfortunately, without opioids, getting off the pramipexole is an awful experience. I, and many others here, have done it. The good news is that once you are off the pramipexole, your RLS may be easier to control with lower doses of drugs. Unfortunately, however, there...
by stjohnh
Wed Dec 30, 2020 7:43 pm
Forum: Prescription Medications
Topic: Iron IV Treatments
Replies: 3
Views: 69

Re: new member - transitioning from ropinirole to gabapentin

I am an MD but not a neurologist nor a specialist in restless legs syndrome (RLS). I am on this forum trying to see if I can find help for a former patient of mine who has RLS. In my wish to help him I have read over 100 papers on RLS and been in contact with some of the major MDs (Chris Earley) in...
by stjohnh
Tue Dec 29, 2020 10:20 pm
Forum: Prescription Medications
Topic: RLS and New Drug Development
Replies: 5
Views: 84

Re: RLS and New Drug Development

Well, just because we have not heard of new drug development doesn't mean it is not happening. With the prevalence of RLS being fairly high, the number of potential patients a new drug would help is large. I suspect several pharmaceutical companies are working on new drugs. I think the biggest curre...
by stjohnh
Fri Dec 25, 2020 3:23 am
Forum: Prescription Medications
Topic: Marijuana use
Replies: 3
Views: 86

Re: Marijuana use

Lots of folks here use marijuana (THC). BUT, most find it helps sleep, but isn't particularly helpful for urge-to-move (jumpy legs). I now get IV iron infusions which helps the urge-to-move tremendously, and insomnia somewhat. Anyway, When I was taking other meds for RLS (pramipexole and gabapentin ...
by stjohnh
Sun Dec 13, 2020 12:52 pm
Forum: Just Joined?
Topic: withdrawal from ropinirole
Replies: 13
Views: 164

Re: withdrawal from ropinirole

There are some people who can get off the dopamine agonist (ropinirole in this case) by very slow gradual taper like you are proposing. For some reason that is not what usually happens. As far as the torture of cold turkey, Steve has painted a grim, but unfortunately, all to real scene. I did it, bu...
by stjohnh
Thu Dec 10, 2020 1:19 pm
Forum: Just Joined?
Topic: going "cold turkey"
Replies: 22
Views: 499

Re: going "cold turkey"

Augmentation results in symptoms of "very severe" RLS.
by stjohnh
Thu Dec 10, 2020 1:15 pm
Forum: Augmentation
Topic: RLS in Parkinson's patients
Replies: 6
Views: 235

Re: RLS in Parkinson's patients

I don't know specifically about levodopa in patients with both parkinsons and RLS, but in RLS patients, levodopa causes augmentation VERY quickly, and is generally considered a no-no for daily RLS treatment. It is occasionally used for RLS as a supplemental or emergency treatment in special situatio...
by stjohnh
Tue Dec 01, 2020 11:29 pm
Forum: Just Joined?
Topic: going "cold turkey"
Replies: 22
Views: 499

Re: going "cold turkey"

Steve sounds about right to me, switching to opioids now will make your upcoming surgeries much easier to deal with. Hospital nurses are far more likely to continue opioids for a patient who had been on them regularly. Persuading a nurse to give you opioids in your preop NPO phase because "I have re...
by stjohnh
Tue Dec 01, 2020 7:30 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Medical Marijuana in non-recreational US states
Replies: 12
Views: 975

Re: Medical Marijuana in non-recreational US states

I live in California, so can get either recreational or medical. Medical requires reauthorization every year, with a visit to the pot doctor, about $60 per year minimum. I found that while the taxes are high on recreational, the tax for the amount I use is less than $60/year, and if I use recreation...
by stjohnh
Tue Nov 24, 2020 9:56 pm
Forum: Augmentation
Topic: trying no medication at all
Replies: 3
Views: 126

Re: trying no medication at all

There are a variety of physical treatments that have had some, but inconsistent, positive effects reported by members of this forum. Hot water, cold water, compression stockings, massage, vibrating machines, etc. Do a search or browse the Physical Treatments section of this forum. I think the Relaxi...