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by Rustsmith
Thu Sep 20, 2018 10:32 pm
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 35
Views: 415

Welcome to Mellie

Thursday, September 20 Welcome to Mellie, whose RLS keeps her from sleeping. She can't sit for very long, so airplane rides can be excruciating/embarrassing. Please post a note telling us what you are doing to manage your RLS so that we can offer some suggestions, which would include making airplane...
by Rustsmith
Thu Sep 20, 2018 1:12 am
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 35
Views: 415

Welcome to szigmond

Wednesday, September 19 Welcome to szigmond, who is up most nights with RLS. Pramipexole helps some. Recently szigmond took a trip that required various air flights on 4 separate days-- usually RLS does not occur much in the day but each day szigmond had RLS on either the first or second flight or b...
by Rustsmith
Wed Sep 19, 2018 4:33 pm
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 30
Views: 317

Re: Medication causing Apathy?

At this point, I think that it is my doctor's intention that Tramadol is a temporary treatment. I see her again in January and I will not be surprised if she wants to switch me back to methadone at that time. But all that is really a guess on my part. As for dose, I do not see any reason why I would...
by Rustsmith
Wed Sep 19, 2018 2:36 pm
Forum: Prescription Medications
Topic: Tolerance issues in general
Replies: 8
Views: 134

Re: Tolerance issues in general

There should be a special category for you "EXTREME." In the paper by Dr William Ondo describing a patient that received DBS surgery because none of the treatments that they tried was working, he used the term "malignant" RLS. I gathered that her IRLSSG score was 40 before the s...
by Rustsmith
Tue Sep 18, 2018 7:41 pm
Forum: Just Joined?
Topic: Undiagnosed RLS
Replies: 4
Views: 51

Re: Undiagnosed RLS

The required dose of gabapentin is something that varies a lot between individuals. 300mg at bedtime can be enough for some people to fall asleep and others may require 900, 1200 or more. Often the recommendation is to start low and titrate up, but that is a decision that needs to be made by your do...
by Rustsmith
Tue Sep 18, 2018 4:13 am
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 30
Views: 317

Re: Medication causing Apathy?

Final update - I increased my dose of Tramadol ER yesterday and finally got a reasonable amount of sleep last night (6.5 hrs). I would have gotten more, but I just didn't feel tired at bedtime. Today, I feel good and have started enjoying the fact that I can experience happiness and other emotions a...
by Rustsmith
Tue Sep 18, 2018 3:10 am
Forum: Just Joined?
Topic: Undiagnosed RLS
Replies: 4
Views: 51

Re: Undiagnosed RLS

First, for some people, RLS is something that does not happen every night. One of the questions that is used to score the severity is how many nights per week that you experience it. The questions on the "official" diagnosis questionnaire can be found at http://irlssg.org/diagnostic-criter...
by Rustsmith
Mon Sep 17, 2018 11:39 pm
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 35
Views: 415

Welcome to dave851

Monday, September 17 Welcome to dave851, who has RLS with Periodic Leg Jerks. He has gone through the mill from Sinemet to Mirapex and now Lyrica. He needs to find the right dosage and "cocktail" that works for him. He hates evenings - can never relax. He hopes he can get some suggestions ...
by Rustsmith
Mon Sep 17, 2018 11:21 pm
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 35
Views: 415

Welcome to luciekitty04

Monday, September 17

Welcome to

luciekitty04, who is joining because she would like to get advice on her undiagnosed RLS.

Please post a note telling us about your symptoms and asking any questions that you have. We would love to be able to help you out.
by Rustsmith
Mon Sep 17, 2018 2:40 am
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 35
Views: 415

Welcome to Poex6

Sunday, September 16 Welcome to Poex6, who has had severe RLS for 10 years. It's been in her legs, thighs, hips and arms for most of that time. She has daytime symptoms as well as at night and is having symptoms a few times during the day and at night even with medication. She is usually up out of b...
by Rustsmith
Sun Sep 16, 2018 11:11 pm
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 35
Views: 415

Welcome to anndees

Sunday, September 16 Welcome to anndees, for whom looking back, has had RLS since early childhood, and now, 50 years later, her life is severely impacted by this condition. Her symptoms usually commence upon waking, and last all day, culminating in horrendous symptoms from about 5pm onwards. She kno...
by Rustsmith
Sun Sep 16, 2018 7:49 pm
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 30
Views: 317

Re: Medication causing Apathy?

I experienced clinical depression that lasted 3 months many years ago and unrelated to drug use. What you've described here sounds to me a lot like a version of clinical depression. That is why my doctor requested that I see a mental health professional, partly because I had a medication induced ev...
by Rustsmith
Sun Sep 16, 2018 7:31 am
Forum: General Topics: RLS/WED
Topic: Published Research - General Sleep and RLS (WED)
Replies: 415
Views: 96335

Re: Published Research - General Sleep and RLS (WED)

I was able to read the full paper. It included both a review of published DBS work on RLS patients as well as a review of a number (22) of Parkinsons patients whose DBS was performed at the University of Colorado - Denver. The review found that in general, DBS reduced, but did not eliminate, the nee...
by Rustsmith
Sun Sep 16, 2018 6:59 am
Forum: Prescription Medications
Topic: Medication causing Apathy?
Replies: 30
Views: 317

Re: Medication causing Apathy?

One final thing that I forgot to add to my previous post. I asked my doctor if she would put me on dipyridamole. She declined my request and said that the size of the clinical study was still too small. But then she reported that their research group has started to look for funding for a study to in...
by Rustsmith
Sun Sep 16, 2018 1:36 am
Forum: Just Joined?
Topic: SEPTEMBER 2018 - NEW MEMBERS
Replies: 35
Views: 415

Welcome to Jani67

Saturday, September 15 Welcome to Jani67, whose RLS has disturbed her sleep many times. It was terrible prior to taking a prescription as well as sleeping medication. If this stops working she will want to see other successful therapies. Take a look around and you will find many discussions about wh...

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