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by stjohnh
Sat Feb 23, 2019 4:24 am
Forum: Just Joined?
Topic: Hi, I’m new to the group.
Replies: 2
Views: 12

Re: Hi, I’m new to the group.

Hi s3v3n11. Welcome to the RLS group. You will find many helpful, understanding people here. Folks who "get it," when most of our friends and family just can't understand how many problems this disease causes. You are almost certainly augmenting, as you are on very high doses of pramipexol...
by stjohnh
Sat Feb 23, 2019 2:21 am
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: Six year old daughter with RLS
Replies: 1
Views: 11

Re: Six year old daughter with RLS

I have suffered tremendously from RLS, significant symptoms starting 10-15 years ago. It breaks my heart to hear of a 6 year old with this disease. RLS is caused by Brain Iron Deficiency. In many cases BID responds (in adults) to intravenous iron but not to oral iron (unless blood shows iron deficie...
by stjohnh
Fri Feb 22, 2019 3:54 pm
Forum: Physical Treatments
Topic: Has anyone tried OSKA Pulse?
Replies: 1
Views: 24

Re: Has anyone tried OSKA Pulse?

Hi Joe, Welcome to the RLS community. You will find lots of help, understanding, and compassionate people here. Tell us a little about your RLS experience and maybe we can help even more. Website https://www.oskawellness.com/ Amazon https://www.amazon.com/Portable-Electromagnetic-Stiffness-Inflammat...
by stjohnh
Thu Feb 21, 2019 12:56 am
Forum: Prescription Medications
Topic: Methadone to Buprenorphine
Replies: 4
Views: 47

Re: Methadone to Buprenorphine

Thank you both for your replies. I’ve yet to start it as I’m fighting what looks to be a losing battle with my insurance co. even with a thorough prior authorization from my Dr. They claim the ‘only’ approved use is ‘opioid dependence’ which I’m fairly sure per what my Dr told me, is inaccurate. I’...
by stjohnh
Sun Feb 17, 2019 12:04 am
Forum: Just Joined?
Topic: New to Site; hello to all
Replies: 58
Views: 7937

Re: New to Site; hello to all

Also new to site... ...I have stopped flying because the restlessness is like torture. I must drive people around me crazy as I can't sit still. I don't take any medications for it, but an occasional iron pill. I guess I have come in here to ascertain if anyone HAS found relief of any kind for thes...
by stjohnh
Thu Feb 14, 2019 9:50 pm
Forum: Just Joined?
Topic: Introducing myself
Replies: 5
Views: 81

Re: Introducing myself

Hi redshoes, I'm glad you found us. RLS is nearly impossible for people who do not have RLS to understand how devastating this disease can be. Folks here get it. You will find lots of great information and support from the community. I'm really sorry you are augmenting, RLS is bad enough without tha...
by stjohnh
Wed Feb 13, 2019 2:57 pm
Forum: Prescription Medications
Topic: Neupro Cost
Replies: 13
Views: 113

Re: Neupro Cost

... The neurologist thinks the pain in my thighs is from 50 years of PLMS damaging the nerves. I don't really buy it but don't have a better answer. The pain can come and go in an hour, last all night or a hour. I think he will come back with Lyrica which I understand is also crazy expensive and da...
by stjohnh
Tue Feb 12, 2019 10:07 pm
Forum: Prescription Medications
Topic: Neupro Cost
Replies: 13
Views: 113

Re: Neupro Cost

Yup, VERY expensive. I was on it a while and it worked ok, but I had skin rashes and had to stop. The FDA labelling says 42% of people have skin rashes. Call your doc and say "I can't afford Neupro."
by stjohnh
Tue Feb 12, 2019 7:36 pm
Forum: Help for Relationships
Topic: I'm tired of fighting
Replies: 9
Views: 137

Re: I'm tired of fighting

Sleep study confirmed RLS,... Both my iron levels are normal. My vitamin D is normal. The rest of my CBC and my TSH are normal. I've tried Mirapex, Ropinirole, Neupro, Lyrica, Horizant, Gabapentin, Clonazepam, Clonidine, Marijuana, and Alprazalom. At the very best I'm able to get to sleep past the ...
by stjohnh
Sat Feb 09, 2019 6:11 pm
Forum: General Topics: RLS/WED
Topic: Is bromine causal?
Replies: 7
Views: 78

Re: Is bromine causal?

I appreciate your comment stjohnh. Could you elaborate? Does the Brain Iron Deficiency, and genetic predisposition findings rule out other chemical contributors, like bromine? I read that a variety of chemicals contribute to RLS; e.g. tannins, caffeine, etc. So it's a sincere question. Here is a li...
by stjohnh
Sat Feb 09, 2019 4:06 pm
Forum: Prescription Medications
Topic: It IS about Quality of Life
Replies: 14
Views: 761

Re: It IS about Quality of Life

...Posting does not come intuitive lie to me. I have attempted to post twice before but not before I had a chance to correct. Then it seems my notations disappeared. I don't like redoing things but I did want to make these comments of thanks to Stephen and Holland The "disappearing comments&qu...
by stjohnh
Fri Feb 08, 2019 6:56 pm
Forum: Prescription Medications
Topic: Experience with Injectafer?
Replies: 38
Views: 1707

Re: Experience with Injectafer?

I am now 9 weeks post infusions. Still 95% reduction in RLS symptoms. I have continued on low dose kratom (360mg at night) because of a bad cold, kratom is a very effective cough suppressant.

8 week post infusion ferritin came back. Now 735. Was 90 before infusion.
by stjohnh
Fri Feb 08, 2019 3:14 am
Forum: Prescription Medications
Topic: Attempting to get off Ropinirole - again
Replies: 61
Views: 1910

Re: Attempting to get off Ropinirole - again

...Alongside titration of the Lyrica I have reduced my Ropinerole daily intake from 5mg to 3mg. This week I will drop the Ropinerole a little further, maybe by .25mg or .5mg ......... down to 2.75mg or 2.5mg daily while holding the Lyrica still at 300mg daily until I see my GP again regarding the L...
by stjohnh
Fri Feb 08, 2019 3:11 am
Forum: Prescription Medications
Topic: Cannabis
Replies: 30
Views: 600

Re: Cannabis

When I was using cannabis I usually used 15mg THC as edible each night. I occasionally supplemented with vaped cannabis oil, though rarely. I found that vaped cannabis alone had too short a duration of action to be useful. I found oral cannabis quite consistent, effects being noticeable about an hou...
by stjohnh
Fri Feb 08, 2019 3:04 am
Forum: Augmentation
Topic: Vibration helped me through the drug holiday
Replies: 4
Views: 222

Re: Vibration helped me through the drug holiday

Barry, That does sound like a great way to treat RLS. There is a vibrating pad called Relaxis http://myrelaxis.com/ that is FDA approved for treatment of RLS. Comments by the very few users on this forum that have used it haven't been very encouraging however. Maybe because they didn't have the wond...

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