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by stjohnh
Fri Sep 21, 2018 6:59 pm
Forum: Just Joined?
Topic: An old member just returning
Replies: 3
Views: 33

Re: An old member just returning

Perry, Welcome back. 1.5mg mirapex is a high dosage. You may be augmenting. Discuss this with your neurologist.
by stjohnh
Wed Sep 19, 2018 2:33 pm
Forum: Prescription Medications
Topic: My pharma diary
Replies: 132
Views: 18230

Re: My pharma diary

I will also try Ferritin infusion but my own doctor is not doing it. So I have to look for doctors in town who are doing it and I am not sure if there are any. So getting Ferritin might end being complicated but when I respond to Oxcarbazepine, I would have lots of time to find one and eben could l...
by stjohnh
Wed Sep 19, 2018 1:42 pm
Forum: Prescription Medications
Topic: Tolerance issues in general
Replies: 8
Views: 137

Re: Tolerance issues in general

And for Carbamazepine, this drug was my special hope. I was so sure I'd found something with this drug. But again, I was so wrong ... again. Carbamazepine also has effects like an SRRi antidepressent. They are not as strong as an classic SSRi but when you take crazy high doses like I did and Carbam...
by stjohnh
Mon Sep 17, 2018 7:58 pm
Forum: Augmentation
Topic: A question about dopamine agonist withdrawal
Replies: 4
Views: 329

Re: A question about dopamine agonist withdrawal

After taking 1 mg. of physician's samples of Neupro patch for a few days I had relief of my RLS but after a week I awwkened with jerky legs. I added another 1 mg. patch and suffered severe urinary retention, itchy sores at application site and other body parts and slight memory lapse. This was not ...
by stjohnh
Tue Sep 11, 2018 6:00 am
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 309

Re: dipyridamole

It's hard to know just why. Thanks for the info.
by stjohnh
Tue Sep 11, 2018 2:43 am
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 309

Re: dipyridamole

Steve, The paper describing the use of dipyridamole used test subjects that had mild RLS. My experience and the experience of Rachel (legsbestill) is that for people with moderate and severe RLS that dipyridamole doesn’t replace the regular medicines that you used to control your symptoms. What it d...
by stjohnh
Mon Sep 10, 2018 9:08 pm
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 309

Re: dipyridamole

Steve, when you are trying the dipyridamole, were you also taking your regular medications, no other medications, partial doses of your medications?
by stjohnh
Sun Sep 09, 2018 1:48 pm
Forum: General Topics: RLS/WED
Topic: How long have you had RLS/WED
Replies: 8
Views: 143

Re: How long have you had RLS/WED

I am 70. Symptoms started about age 35. It didn't interrupt my sleep until about 5 years ago, that's when I started on medication.
by stjohnh
Sun Sep 09, 2018 1:16 pm
Forum: Prescription Medications
Topic: Tolerance issues in general
Replies: 8
Views: 137

Re: Tolerance issues in general

Be advised: this is only the personal perspective and opinion of a RLS patient like yourself. He is not (yet) a medical professional. . . . And please consider iron treatment if you haven't done so already. There is good evidence that it really can help and keep in mind that all this is only my per...
by stjohnh
Thu Sep 06, 2018 11:39 pm
Forum: Prescription Medications
Topic: Is it possible to worsen/get RLS from mirtazipine interdose withdrawal?
Replies: 8
Views: 140

Re: Is it possible to worsen/get RLS from mirtazipine interdose withdrawal?

Stick a nail in your ear? :roll:

It is actually conceivable that there could be more direct ways of getting the brain iron levels up. The simplest perhaps would be injecting an iron compound directly into the cerebrospinal fluid during a spinal tap.
by stjohnh
Wed Aug 29, 2018 10:05 pm
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 309

Re: dipyridamole

Tried to talk my Dr into letting me try dipyridamole. He wouldn't even consider it. Just said that was too small of a test to make any conclusions. I think that is what most prudent doctors would say given the limitations of the study. I think the best argument that most people with RLS can make is...
by stjohnh
Wed Aug 29, 2018 2:07 pm
Forum: Prescription Medications
Topic: dipyridamole
Replies: 15
Views: 309

Re: dipyridamole

I'm the other one of the two known dipyridamole users that post here. My experience is similar to Rachel's. I have severe RLS. The RLS that was treated in the paper was mild-moderate. I too have found that it didn't seem to help much for urge to move symptoms and helped a little bit for sleeping. Wh...
by stjohnh
Tue Aug 21, 2018 11:38 pm
Forum: General Topics: RLS/WED
Topic: Published Research - General Sleep and RLS (WED)
Replies: 416
Views: 96451

Re: IRLSSG Paper on Iron and Iron IVs

This paper is a joint consensus paper commissioned by the IRLSSG that discusses the latest thinking on iron and the use of various iron IV solutions for the treatment of both adult and pediatric RLS. https://www.sleep-journal.com/article/S1389-9457(17)31559-9/pdf This is a much needed and absolutel...
by stjohnh
Tue Aug 21, 2018 2:38 pm
Forum: Physical Treatments
Topic: Training Brain to Release Dopamine earlier
Replies: 11
Views: 1079

Re: Training Brain to Release Dopamine earlier

Benadryl is one of those examples of supreme failure by the FDA. Benadryl has been shown in studies to cause an increase in automobile accidents for those users on the day after they use Benadryl for sleep. It should certainly not be an over-the-counter medication, especially for use as a sleep medi...
by stjohnh
Mon Aug 20, 2018 7:30 pm
Forum: Prescription Medications
Topic: Neupro
Replies: 20
Views: 617

Re: Neupro

As for the price, that is what drives many away from Neupro. The patent on it expires in 2 years. It will be interesting to see how long it takes for a generic (i.e. cheaper) form to become available after that. Transdermal technology (patches) is considerably more complex than making an oral pill....

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