Hyperalertness - Research Study

[rthom]

I have studies done on my legs and sometimes there is so much noise that the nerve conducton tests come out negitive--like i have no pathways to my feet.

[jul2873]

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 it, I'll post every so often and let everyone know how it's going.

[Polar Bear]

jul2873 - well done for considering this. We will be so eager to hear of your experience.

[ViewsAskew]

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 it, I'll post every so often and let everyone know how it's going.

Thank you!!!!!!

[badnights]

jul, I'm happy you're looking into this and I hope they accept you and that it all goes well. Thanks for letting us know!

[debbluebird]

I wish there was a study for someone like me, who has sleep apnea, severe WED and PLMD for a very long time. Plus having tried every drug almost. I think they should look at the very severe.
DEB

[ViewsAskew]

I wish there was a study for someone like me, who has sleep apnea, severe WED and PLMD for a very long time. Plus having tried every drug almost. I think they should look at the very severe.
DEB

The problem with the very severe is how do you do it - do they have to be off of their drugs for the testing they are doing? That doesn't work well. If on drugs, you may not be able to see things you need to. As one of the severe ones, I just don't know how they can design the study to include me without me having to go through more than I'm willing to!

[debbluebird]

I agree with you. I just wish there was a way. I would just like for them to see how we really are.
DEB

[badnights]

I agree with you. I just wish there was a way. I would just like for them to see how we really are.
DEB

That's exactly why I want to do the video. How many times have I read similar sentiments on here? it seems like every day that I read the forums. someone is saying the same thing. I just want people to know what it's like!!

[ViewsAskew]

Not to be a Debbie Downer, but I'm not sure they can know from a video. They can't feel the feeling. They can't know how my brain feels, the anxiety that accompanies it, or the angst of feeling like SIsyphus.

I'm not saying that it won't help. It will. Also not saying not to do it - I think it it's as helpful for you, Beth, as those who will see it. But, watching a video of someone pregnant isn't the same as when they stick that pregnancy suit-thingee on the father-to-be and have him walk around in it all day, trying to get up and down, fit into spaces, go to the bathroom, find clothes to fit, etc.

They developed some machine that people can wear the simulates the sensation of WED, IIRC. We need thousands of those to take to doctors' offices!

I really think that most of our researchers already get it. It's everyone else I want to help "understand" what it's like - the family doctors, the nurses in the ER, the pharmacist.

OK, off soapbox - having crappy night .

[badnights]

Are you willing to be interviewed for the video? (if it happens, and if the person I want agrees to do it). Probably it would be a remote video interview. It would be better to have your face not just your voice, even if it's low-quality video.
I've been thinking about ways to capture people talking, both professionals and patients, and that's all I came up with so far. My guy (if he agrees) might have a better idea.

[rthom]

who are you asking beth? Are you looking for certain folks, or types of folks?

[badnights]

I was replying to ann , but I will probably interview almost anyone who will express interest in it. I'm not going to do the interviewing myself. I'll get my friend to do that' if he's willing to, because that's his job, he's a journalist & he's good at it.

But clearly I don't know anything abt this whole business, and have to learn lots. Pointers and suggestions from anyone welcome. First I should watch some highly successful documentaries abt medical issues and determine to what they owe their success. But I don't know of amy. Are there even any successful medical documentaries??

[rthom]

I would guess we need to ask sme medical pro's that one, eh

[badnights]

not really for pros, main audience is the public. The idea that it could be useful for pros as well would be added bonus if it was true.
I should keep this fantasy in a different thread, perhaps.