Search found 1284 matches

by stjohnh
Sun Apr 14, 2019 1:34 pm
Forum: Just Joined?
Topic: Hello to all
Replies: 15
Views: 1443

Re: Hello to all

.... My personal feeling is that RLS has something to do with the levels of L-dopa in the brain, either too much or not enough, I don't know. Also, when I am lying in bed and the legs are fine and I think to myself, great, the legs are still tonight, then as the thought leaves me, the legs begin. C...
by stjohnh
Fri Apr 12, 2019 8:13 pm
Forum: Prescription Medications
Topic: Anyone NOT experience augmentation on ropinirole?
Replies: 9
Views: 615

Re: Anyone NOT experience augmentation on ropinirole?

Hi SleepyJudy, sounds like you are still sleepy, like many of us. Dopamine agonists like ropinirole are generally thought to eventually cause augmentation in nearly everyone, though may take over 10 years for some. Augmentation is less likely if the dose is kept as low as possible and iron levels ke...
by stjohnh
Fri Apr 12, 2019 2:22 pm
Forum: Just Joined?
Topic: Is this RLS? So confused and need help
Replies: 6
Views: 969

Re: Is this RLS? So confused and need help

Hi JazzyJoan, Welcome to the RLS community, lots of kind, helpful folks here and you will likely gets lots of support, good info, and suggestions. One crucial point about RLS: when you have the leg sensations in the evening, while awake, do they get better immediately by getting up and walking aroun...
by stjohnh
Fri Apr 12, 2019 2:07 pm
Forum: General Topics: RLS
Topic: RLS and CFS/ME
Replies: 5
Views: 888

Re: RLS and CFS/ME

... There is a natural question I haven't touched yet: "WHAT IS IT?" What caused it? As with RLS, there seem to be a lot of possible causes, and many cases where we can't pinpoint one. I'll give you at least some speculation... Time to share something :-) Wow, I think you have given the most cogent...
by stjohnh
Tue Apr 09, 2019 2:33 pm
Forum: General Topics: RLS
Topic: Published Research - General Sleep and RLS (WED)
Replies: 534
Views: 391763

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

The editorial (available via a link on the linked page) is written by Ferre and seems to concern the research that was reported in his 2017 paper. badnights, your assumption is correct. The editorial is more understandable than Ferre's original paper, probably because it was written by the journal ...
by stjohnh
Mon Apr 08, 2019 6:06 pm
Forum: Just Joined?
Topic: Hello to all
Replies: 15
Views: 1443

Re: Hello to all

Hi Twitch, Welcome to the RLS forum. There is a great deal of experience, knowlege and compassion among the forum members. Someone will have experience with almost anything you can imagine. I am 71, but didn't get RLS until my mid 30's. Looks like you have found out a lot about RLS just from experie...
by stjohnh
Fri Apr 05, 2019 1:37 pm
Forum: Special Populations: Pediatric, Pregnancy, Secondary, etc.
Topic: New member - 8 year old son diagnosed at 6 with RLS/PLMD
Replies: 18
Views: 20126

Re: New member - 8 year old son diagnosed at 6 with RLS/PLMD

My son is 6 and was diagnosed with PLMD at 4-yrs-old. We have been treating his symptoms with iron therapy but his ferritin levels haven't improved. We are at a loss what to do. Have you found that the Mayo clinic has helped? We feel terrible for him because you can tell he's tired and cranky. It's...
by stjohnh
Wed Apr 03, 2019 7:42 pm
Forum: General Topics: RLS
Topic: Very Tired
Replies: 90
Views: 6907

Re: Very Tired

Yay!!
by stjohnh
Wed Apr 03, 2019 2:41 pm
Forum: Prescription Medications
Topic: Gabpentin withdrawal time table?
Replies: 6
Views: 712

Re: Gabpentin withdrawal time table?

You shouldn't need to. Just stop it. Remember gabapentin alone usually helps only folks with mild RLS. Your RLS likely has progressed (unless you have had an IV Iron infusion) and will require other therapy (dopamine agonists, IV Iron or opioids). If the gabapentin had been working well previously, ...
by stjohnh
Wed Apr 03, 2019 2:31 pm
Forum: Prescription Medications
Topic: Gabapentin Stop and Start up again later effective?
Replies: 7
Views: 799

Re: Gabapentin Stop and Start up again later effective?

Are you taking Mirapex as well? If so, what dose? You should be able to just stop the gabapentin, no tapering needed. I hope your doc is correct. In the RLS community we usually talk about resetting receptors for people using dopamine agonists like Mirapex, not the alpha 2-delta ligand group (gabape...
by stjohnh
Tue Apr 02, 2019 12:51 pm
Forum: Just Joined?
Topic: New to Group
Replies: 7
Views: 850

Re: New to Group

Did it always bother you in the daytime? Have any of your doctors discussed augmentation? So the only medicines you have ever taken for RLS are gabapentin, Mirapex, and valproic acid, is that correct?
by stjohnh
Tue Apr 02, 2019 12:12 pm
Forum: Just Joined?
Topic: New to Group
Replies: 7
Views: 850

Re: New to Group

Hi Flipper, Welcome to the RLS community of fine folks. The cumulative experience and knowledge of the people on this forum is unmatched. You will find people who have had any and all exeriences with RLS. You will find empathy and compassion in an area where many patients have almost no one in their...
by stjohnh
Tue Apr 02, 2019 8:42 am
Forum: Augmentation
Topic: Suicidal thoughts
Replies: 23
Views: 12749

Re: Suicidal thoughts

The feeling of being trapped with no solution in sight is a sign of depression as well. You have certainly had some bad luck with incompetent doctors, and yes it happens all too often. In your "I'm tired" thread I suggested increasing your kratom, check there. You can certainly call a suicide hotlin...
by stjohnh
Tue Apr 02, 2019 8:36 am
Forum: General Topics: RLS
Topic: Very Tired
Replies: 90
Views: 6907

Re: Very Tired

Deb, I forgot, why are you trying to wean off the methadone? With the family concerns perhaps it would be better to wait if you really must get off it. Also if kratom seems to help a bit, maybe you should increase the dose, 1/2 tsp is a low dose. Kratom is used by people to ease opiod withdrawal, be...
by stjohnh
Tue Apr 02, 2019 3:37 am
Forum: General Topics: RLS
Topic: Very Tired
Replies: 90
Views: 6907

Re: Very Tired

Deb, I know your ferritin has been high in the past, but the levels were so high as to suggest some other problem. Perhaps you took iron just before the test? The test should be done fasting, on an empty stomache, with no oral iron for 48 hours before the test. Most people will have levels below 200...