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by jul2873
Thu Jan 31, 2013 2:33 am
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

I hope it helps you, Ann. I was initially nervous about taking so much, but I knew it was either that or go on meds soon, and I figured there was less risk with the supplements. I haven't had any side effects at all. None. Except for the few daily episodes of RLS I feel great. So I am really hoping ...
by jul2873
Thu Jan 31, 2013 1:09 am
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

I'm taking 18 grams of D-ribose a day--using pills that are 1.5 grams each. I take two pills every four hours (or a bit more at night if I get a long stretch of sleeping). So I've been taking this much for three weeks now. A week ago I also started taking Omega 3.6.9, L-Carnitine, Vitamin C and E, M...
by jul2873
Fri Jan 25, 2013 11:41 pm
Forum: General Topics: RLS/WED
Topic: FDA Panel recommends Hydrocodone drugs be further restricted
Replies: 11
Views: 1757

FDA Panel recommends Hydrocodone drugs be further restricted

An FDA panel today agreed with the recommendation for the DEA that drugs containing hydrocodone be moved to a schedule 11 drug from schedule 111. Vicodin is the most commonly prescribed drug that will be affected. Here is an article about the hearing in the Washing Post http://www.washingtonpost.com...
by jul2873
Fri Jan 25, 2013 11:23 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

Thanks, Beth. I did get a note yesterday, saying, essentially, thanks anyway. They definitely want the PLM. And no mention of the D-ribose. Oh well! I am starting to think that the main thing the ribose does for me is get rid of that hyper feeling that prevented me from sleeping very much. And my gu...
by jul2873
Mon Jan 21, 2013 11:02 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

Hi Beth, Thanks for your note. I have never been on meds, which is one reason they were very interested in using me for the study. I've been to a neurologist, who prescribed them but I didn't fill the prescription. I'm just really scared of going on them, and the RLS--although impacting my life more...
by jul2873
Sun Jan 20, 2013 1:50 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

Oh, and Ann, I am very grateful to you for posting the info. about this study. I had seven hours of sleep last night (broken up, but still seven hours.) Wa-hoo!
by jul2873
Sun Jan 20, 2013 1:46 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

I looked at the consent sheet again and see that I read it wrong. You do not give up your right to sue: "By signing this form you will not give up any rights you otherwise have to seek compensation for injury." Also, I checked, and federal regulations prohibit any language in these consent...
by jul2873
Sat Jan 19, 2013 11:22 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

Update on the study: I got the packet from Johns Hopkins today. It turns out there are two parts to the study. One part you do at home, wearing leg monitors, keeping a sleep diary etc. If they conclude from that that you in fact do have RLS then they invite you to take part in the second part of the...
by jul2873
Sat Jan 12, 2013 1:07 am
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

Thanks for the encouragement, Ann. Hey, I hope your new job works out okay for you. I'm sorry you are going through such a stressful time.
by jul2873
Fri Jan 11, 2013 7:27 pm
Forum: Physical Treatments
Topic: Traveling over the holidays
Replies: 19
Views: 4481

Re: Traveling over the holidays

Chipmunk, I'm sorry, but I just saw your question about what the "climbing" technique is. It's when you stand on the balls of your feel and first lower one heel and then the other, without ever letting your heel touch the ground. I need to hold on to a counter or something while I do it. I...
by jul2873
Fri Jan 11, 2013 6:12 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

Okay, more research. Again, keep in mind that I have no scientific background at all. Article on caffeine and glutamate and adenosine: http://www.sciencentral.com/articles/view.php3?article_id=218392537 "The research team showed that under normal "awake" conditions these arousal cente...
by jul2873
Tue Jan 08, 2013 1:08 am
Forum: General Topics: RLS/WED
Topic: Work, wakefullness, and other pitfalls
Replies: 62
Views: 9146

Re: Work, wakefullness, and other pitfalls

Ann, I think I'd get a letter from my doctor as well, explaining that you have WED and these medications are necessary for you to function. Taking medication for a diagnosed disease is covered under the Americans with Disabilities Act. For example, an employer may not decide a diabetic cannot take i...
by jul2873
Mon Jan 07, 2013 12:37 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

I wish I understood chemistry well enough to read these studies intelligently. At any rate, from my less-than-stellar understanding, I think I'm seeing that one way to get adenosine levels up is to eat brewers yeast which, of course, is full of B vitamins. So perhaps the amino acid supplements helpe...
by jul2873
Mon Jan 07, 2013 3:06 am
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

I did have an intake interview for the study. They aren't really ready yet; should be a couple of months. Meanwhile they're sending me paperwork etc. Anyway, I'm wondering. My understanding of the study is that it is to see if our brains are somehow producing too much glutamate. I know there are peo...
by jul2873
Wed Dec 26, 2012 7:42 pm
Forum: General Topics: RLS/WED
Topic: Hyperalertness - Research Study
Replies: 107
Views: 16859

Re: Hyperalertness - Research Study

It looks like I might do the study. I've never taken meds but am probably approaching the ceiling of living without them (i.e. at least one--often two or three episode a night plus difficulty in the evenings, in planes etc.). I'm set up to talk with the study organizers next week. If I end up doing ...

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