Hyperalertness - Research Study

[ViewsAskew]

Sure, I'd be interviewed.

I wonder if you could get one of those devices that simulate WED. You could use it on random people - people who you interviewed and didn't "believe" in the disease, people who were family members of those with it, etc. Get their before and after thoughts.

Lot of documentaries here: http://documentarystorm.com/category/he ... es-health/ But not sure how to define good or great. This one, on Tourette's, is considered to be on the top 100 list of Documentary Storm's site - but do not know exactly how they are rating them.

While there, I found this fascinating short on the Hubbard Electrometer. Fascinating! http://documentarystorm.com/hollywoods- ... r-testing/

[badnights]

The problem with making men big to simulate pregnancy, and whatever device might be invented to simulate WED, is that they fall short of the reality yet might leave subjects convinced that they now know what it is like. Using the pregnancy thing as an example, having something big attached outside your body doesn't increase your need to pee, doesn't affect your mood by alteration of hormone levels, & otherwise fails to simulate some common aspects of being pregnant. It would be better than nothing, to have such a device for WED, as long as it was clear to the subjects that they were not getting the full-meal deal.

That documentary site is great. I am lost in it already - darn, I had things to do today! lol
It's a good place to start, to get ideas.

(re the e-meter : I shouldn't be surprised. what next)

[ViewsAskew]

You are right - there isn't ANYTHING that really makes people get it. I do think that the simulator for WED is a bit different in that it does keep you from sleeping, resting, participating, thinking.....etc. I don't think it stops when you wander around, but am not sure.

I always find the best I can do is to ask them what they suffer from and see if I can at least compare the psychic pain they feel with their problem.

Imperfect at best....

It is a great site, isn't it? I wish I hadn't found it myself!

[jul2873]

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 people on this board with a much more developed understanding of it, but am I basically right? If so, I've been reading a bit, and see that something called adenosine moderates glutamate to allow sleep. So our problem could be more a lack of adenosine than too much glutamate? Does anyone know about this?

[badnights]

keep investigating/. too much glutamate, yes. adenosine, I don't know, I will look into that and see whether I come to the same understanding, when I have some more time.

It's interesting that too much glutamate is a problem yet the amino acid supplements that chipmunk??? takes (that I recommended to her lol) that I sometimes take, seem to help with the insomnia, for me anyway, though they don' t seem to have any effect on the WED symptoms. but it's wierd that they help at all, because one of the ingredients is glutamate.

[jul2873]

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 helped raise adenosine levels.

An article on uridine http://www.perpetualcommotion.com/a/Uridine.html says that adenosine is one of four basic components of RNA (ribonucleic acid). Uridine is also one of the main components of brewers yeast. But I am really over my head here. Any chemists/researchers on the board?

I do remember in the early 1970's, when I was having my children, that Adelle Davis (nutrition guru then) was alway pushing brewers yeast. In fact, I used to add to to give it to my infant son, and he was a gorgeous, happy baby. So I think I'll try using a bit and see if it helps at all. Can't hurt, I don't think.

[rthom]

Not to sound insulting but it works great for the dogs--It's been a longstanding suppliment for them. Hmmm

[jul2873]

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/vi ... =218392537

"The research team showed that under normal "awake" conditions these arousal centers release an excitatory chemical called glutamate. Glutamate is a neurotransmitter, a chemical that carries messages between brain cells. In the arousal centers it keeps the cells firing, so they interact and respond effectively to everyday stimuli. Through the course of the day however, these same neurons release a second neurotransmitter called adenosine. Adenosine is a natural sleep chemical that counteracts the effects of glutamate and quiets the cells down, essentially making them, and us, sleepy."

The article goes on to say that caffeine blocks the production of adenosine:

""If someone is suffering from insomnia, then we can look at the adenosine system to see if something is going wrong there," says Greene.

Joyce Walsleben, coordinator of the insomnia program at the Sleep Disorders Center at the New York University School of Medicine , says some sleeping irregularities are currently treated with adenosine and that this research is "highly promising" and could help to improve treatments. But she warns that because the research was observed at the cellular level and in rats, it is still only a "building block," for future medications.

It's "meaningless to people until a pharmaceutical company makes the next six [or so] moves down the line," says Walsleben.
Greene plans to be part of those next moves. "Maybe we can manipulate the adenosine system – that is we can facilitate it in a way that induces us to fall asleep in a more natural way," says Greene."

While looking for more on adenosine, I found this interesting study: http://online.liebertpub.com/doi/abs/10 ... .2008.0227

It only involves two people, a man and his father. They were given D-ribose, a sugar (I think) which contains adenosine. With a dose of 5 grams 3 times a day they had a significant, but not complete, remission of their RLS symptoms. The study was so interesting that I wondered why I couldn't find any attempt to replicate or expand it.

But now I'm thinking that perhaps that is what this Johns Hopkins study is doing. The first step, which they are doing, is seeing if RLS patients have too much glutamate in their brain.

Of course, I immediately checked Amazon to see if D-Ribose was available, and it is. It is widely used for fibromyalgia and chronic fatigue. It seems like a very safe supplement so I ordered a bottle and have used it for the last three days now. I am trying hard not to get my hopes up, and am well aware that the benefit I'm feeling may well be a placebo effect, but I do feel better. I was able to sit on the couch last night and read, without getting up every 5 or 10 minutes. Most wonderfully, I'm actually feeling sleepy at night, rather than tired, but wired, as I usually am. I'm still waking up in the night with RLS, but I'm going back to sleep more easily.

So we'll see. I'll keep you up. If, after 2 or 3 weeks, I'm still feeling a significant benefit, I'll post in the non-pharmaceutical section.

[ViewsAskew]

Very cool that you've had a good effect - placebo or not! Most of us will take any good effect for any reason.

I've noticed that sometimes things work for a few days, a few weeks, or even a few months....then all the sudden, they do not. That is fascinating, too. A few days, even a week or so, I can say placebo. But months? Did something else change? Does mood have a huge impact?

I hope before I'm very old and very gray that I finally read the answers - I see myself nodding my head and saying, "Oh! That explains why...."

[jul2873]

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.

[ViewsAskew]

Thanks .

[jul2873]

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 study, that is at Johns Hopkins. They say that the total time you will be off medication will be for 10 days of this phase I and then 3 days of the phase 2, which they schedule to happen right after phase 1. I'm wondering, though, if you need to make airline reservations to get to Baltimore, and if you don't know until the end of phase 1 if you will be doing phase 2 . . . never mind how you would work a job schedule into that . . . .

My other issue with the study is that you need to sign a statement saying you understand that, while Johns Hopkins pays the expenses of this study, if you are injured in it then you need to pay those costs yourself--with your insurance if you have any; otherwise you just need to pay. And you have to sign that you won't sue. Oh, and you get paid ten dollars if you go on to phase 2. Wow.

I don't like the part about them not being responsible for any injury you have. It's hard to see what kind of injury you might sustain, but you will have an MRI, and I imagine that could malfunction.

Plus I am now having an issue because of taking the D-ribose. I sent a note to the study facilitator about a week ago explaining that I was taking these supplements and asking her to run them by the researchers to see if there was a problem. I haven't heard anything back.

Meanwhile, I've upped the D-ribose from 9 grams a day to 18 grams. It's been almost two weeks now, since I've started, and I am doing much better. The RLS flare-ups I get are milder and don't come as often. I'm sleeping better. Last night I only woke up once with RLS, walked around for about 20 minutes, and then went right back to sleep. I've been averaging about 6-7 hours of sleep a night now, instead of the 3-4 before I started the Ribose. So, obviously, it's something I want to keep taking.

All of this is making me more and more reluctant to do the study. I think what I might tell them is that if they can't find enough people I'll reconsider. But I welcome anyone's thought.

Peace,

Mary

[ViewsAskew]

Tough decision.

I wonder if you could ask them if anyone has ever been injured and how/why. I have such a large deductible it would be like me paying cash for it unless it was over $5000.00. And, what if negligence is involved? You're agreeing they won't be responsible and you can't sue if they are negligent? If I knew what could go wrong, it might make me more comfortable with it.

Interesting about the D-ribose. Keep us informed every, say, month or two as long as you take it. I hope, for your sake, it continues to help for a long time.

[jul2873]

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 forms that waive a person's right to sue for damages.

But they will not pay for any treatment that is the result of injury unless you sue, it looks like. The language they use is the language suggested in the federal regulations, so it is apparently a common thing to do.

The other thing is that they want to attach leg monitors at night to see if you have PLMD. Having PLMD is necessary for being included in the study. I am almost positive that I dont' have PLMD. I had understood PLMD was a separate disorder, but perhaps not. At any rate, this study is including it as a necessary part of RLS. So it looks like I wouldn't qualify anyway.

The other odd thing is that research manager told me that this study will take several years. Yet the consent form I got said there are only 35 subjects with RLS and 35 matched controls. That seems like a small study to me. I'm not sure why it will take several years. It is discouraging it will take that long when so many people are suffering so badly right now.

But I am very grateful to the researchers for raising the red flag on glutamate. I will keep the group up on how I am doing with the D-ribose.

[jul2873]

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!