Search found 323 matches

by stjohnh
Wed Nov 15, 2017 11:08 pm
Forum: Just Joined?
Topic: New to Site; hello to all
Replies: 35
Views: 328

Re: New to Site; hello to all

Ok all. Simply exhausted here. Again, 7 sleep meds last night - Valerian and Melatonin. RLS was better with no Diphens, as advised - but I do not sleep. The insomnia is *not* breaking. The most consistent way to treat RLS related insomnia, assuming leg jumping has been controlled, seems to be gabap...
by stjohnh
Mon Nov 13, 2017 6:13 pm
Forum: Just Joined?
Topic: New to Site; hello to all
Replies: 35
Views: 328

Re: New to Site; hello to all

Congratulations on getting the diphenhydramine disedown. It is really important to get off it completely.
by stjohnh
Mon Nov 13, 2017 2:52 am
Forum: Prescription Medications
Topic: Infusion Update
Replies: 84
Views: 7014

Re: Infusion Update

I had my annual visit with Dr. B on Friday. He said he didn't want to check ferritin until things were bad again, so I am guessing I will slowly just need more over time. It is a year since the infusion and 9 months since it started working. Ann, Does it usually take 3 months for the effects of an ...
by stjohnh
Sun Nov 12, 2017 2:51 am
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 27
Views: 1783

Re: Rate of Ferritin Decline

Hi stjohn, are there any other iron indices that will be helpful other than ferritin? or am I just stuck given that they are not going to measure the low iron saturation There are several tests of iron status, however the real problem is not so much the tests that are available, but that the relati...
by stjohnh
Sat Nov 04, 2017 6:00 pm
Forum: General Topics: RLS/WED
Topic: Experimental treatment for Parkinson's disease - stimulating spinal cord
Replies: 4
Views: 91

Re: Experimental treatment for Parkinson's disease - stimulating spinal cord

That would be great. However, Parkinson's disease is quite a bit different from RLS. Both respond to DAs, but Parkinson's patients have dopamine deficiency, RLS patients have dopamine excess. There is an important iron component to RLS, not a part of Parkinson's. I'm sure there are others, but while...
by stjohnh
Fri Oct 27, 2017 2:22 am
Forum: Augmentation
Topic: Neurologist Has No Clue
Replies: 18
Views: 1752

Re: Neurologist Has No Clue

Hello members !! .... I take and I told him Lyrica 175mg and pramipexole 0.75 mg. So he told me I have to increase pramipexole.... Hannah, I'm with Steve. Your pramipexole dose is already too high. The doc saying "take more" tells me the doc doesn't understand treatment of augmentation, a...
by stjohnh
Mon Sep 18, 2017 1:59 pm
Forum: Prescription Medications
Topic: lorazepam and RLS
Replies: 11
Views: 331

Re: lorazepam and RLS

Peanut, Clonazepam is the only benzodiazepine that users here on the RLS Forum say seems to help RLS. Unfortunately it is fairly addictive and quite difficult to get off of and many people don't want to use it because of that. Clonazepam is in a special class even though it is a benzodiazepine becau...
by stjohnh
Tue Sep 12, 2017 1:43 pm
Forum: Augmentation
Topic: Getting off of Requip due to augmentation
Replies: 42
Views: 1133

Re: Getting off of Requip due to augmentation

Don't completely rule out using a low dose of a dopamine Agonist in the future. A number of folks here have found they are able to get by with lower dose opioid along with low-dose dopamine Agonist, reducing the dose of opioid and opiate side effects in the process.
by stjohnh
Mon Sep 04, 2017 2:13 pm
Forum: General Topics: RLS/WED
Topic: What Severe RLS is Like
Replies: 272
Views: 12973

Re: What Severe RLS is Like

I spent several months about a year ago investigating different ways of monitoring sleep and coordinating the results of various sleep monitoring devices with how I felt the next day. I also I checked into sleep physiology a fair amount. I found that while I got a reasonable number of hours of sleep...
by stjohnh
Sat Sep 02, 2017 5:07 pm
Forum: Prescription Medications
Topic: drug holiday
Replies: 10
Views: 444

Re: drug holiday

Use kratom (or an opioid if you have it) with cannabis and gabapentin (or Lyrica). If you mean no drugs at all, be prepared for a week you will remember for the rest of your life, no sleep at all for a day or 2, then an hour or so per night, gradually improving.
by stjohnh
Fri Sep 01, 2017 2:37 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Cannibis Dosage and Timing
Replies: 10
Views: 446

Re: Cannibis Dosage and Timing

My usage and expierence wiith MM is almost identical to Steve's, with the exception of the depression problem at higher doses. I've never used more than 20mg THC per day. My experience with marijuana dispensaries is that the "use high CBD for sleep" recommendation is nearly universal. This...
by stjohnh
Thu Aug 24, 2017 4:56 pm
Forum: Just Joined?
Topic: Introduction
Replies: 8
Views: 376

Re: Introduction

Hi Karine, welcome to the RLS community. You will find lots of help and support here. I'll very briefly touch on the high points of what I would suggest and I'm not sure how much is possible in Europe, but this is what I'd recommend in the United States. First I would make sure to get my ferritin ch...
by stjohnh
Wed Aug 23, 2017 1:53 pm
Forum: Just Joined?
Topic: Hello! I'm new here!
Replies: 3
Views: 337

Re: Hello! I'm new here!

I keep asking God for healing but I have a feeling that the healing will have to take place in a less than miraculous way. SuzeLeslie, Welcome to the RLS Community. You will find lots of help and support here. I would take seriously Steve's comments, he is very well informed. Your comment about God...
by stjohnh
Sat Aug 19, 2017 2:57 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 27
Views: 1783

Re: Rate of Ferritin Decline

Well, for most people getting their iron level up with oral iron is at least a time-consuming and sometimes difficult due to stomach problems. Most people on these boards that want to have an IV iron Infusion have difficulty persuading their doctor to do it. Seeing as how your doctor seems agreeable...
by stjohnh
Fri Aug 18, 2017 3:44 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Rate of Ferritin Decline
Replies: 27
Views: 1783

Re: Rate of Ferritin Decline

Hmmm... by usual measures your iron saturation is low. This indicates that while your ferritin ordinarily would be considered okay, it is likely artificially elevated. Likely that means that your ferritin is definitely on the low side for somebody with RLS. If you haven't had any iron infusions, per...

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