Hyperalertness - Research Study

[badnights]

We get less than 5 hr daylight in the dead of winter (coming up on Dec 21); and in the dead of summer, although the sun sets, its light stays in the sky pretty much all night on June 21. It changes fast, though; we don't get a long period of "midnight sun", you have to be farther north for that. It still freaks out a lot of visitors and makes sleeping for them difficult. I don't know that it affects me, I don't think it ever has (I came up here full of piss and vinegar in my 20's, long time ago).

I haven't been able to notice a difference in my symptoms winter vs summer, they are better in the parts of the summer that I work in the field but I think that's just the outdoor environment, not the daylight. I honestly haven't lived down south long enough since the WED became a problem, to be able to tell if the latitude makes a difference.

There are not even any sleep specialists up here, let alone research studies. Not even in Edmonton, the nearest city of any size - I mean, there are sleep specialists there, but no research that I know of on RLS/WED.

[majoraward]

We get less than 5 hr daylight in the dead of winter (coming up on Dec 21); and in the dead of summer, although the sun sets, its light stays in the sky pretty much all night on June 21. It changes fast, though; we don't get a long period of "midnight sun", you have to be farther north for that. It still freaks out a lot of visitors and makes sleeping for them difficult. I don't know that it affects me, I don't think it ever has (I came up here full of piss and vinegar in my 20's, long time ago).

I haven't been able to notice a difference in my symptoms winter vs summer, they are better in the parts of the summer that I work in the field but I think that's just the outdoor environment, not the daylight. I honestly haven't lived down south long enough since the WED became a problem, to be able to tell if the latitude makes a difference.

There are not even any sleep specialists up here, let alone research studies. Not even in Edmonton, the nearest city of any size - I mean, there are sleep specialists there, but no research that I know of on RLS/WED.

Interesting. You have lived there most of your life so I doubt it would make any difference with your WED/RLS, it is just normal for you. I can't hardly imagine having only 5 hours of daylight in one day. It took me years to adjust to Washington State as I am originally from sunny Southern California. I didn't even see snow until I was about 10 years old. All the rain in Puget Sound and the gray skies was difficult to get used to, I imagine it would be equally difficult for me to get used to where you live from living in Puget Sound and it would totally mess with my WED/RLS. I wouldn't know when to get up or go to bed it would mess with my sleep patterns really bad. I tried working graveyard shift once with WED/RLS and totally failed.

Going back to my growing up in the 70's slang I would have to say it is a "bummer" that there are no studies nearby you, making it very difficult for you to participate as I know you would like to. I actually offered to fly down to Australia for a sleep study once and was rejected because I was not local - lol

[badnights]

Here are downloads with more informnation about the study:-

Study Pamphlet:

Study Pamphlet IRB Approved 2012 AUG 27.pdf

(105.18 KiB) Downloaded 105 times

Recruitment Letter:

Recruitment Letter- IRB Approved.pdf

(234.58 KiB) Downloaded 113 times

Study Protocol and proposal application:

Protocol eFormA_ 2012AUG31_ CRU requested changes_ clean.pdf

(377.12 KiB) Downloaded 106 times

OK, Ive discussed my possible participation in it up there. (I can't believe I'm wrinting all of this on zopiclone) But I will suffer greatly, maybe u=n=bearably, during the time wihtou drugs,

Even since I watched a youtube video of a guy coming off pramipexole or something, it was as painful as coming off heroin , i decided I wanted a documentary film to be made showing how RLSers suffer, both on and off drugs. Well, now I have my chance.

Someone could film me while I prepare to and participate in this study. (ugh ! terrible subject! I turn my face away when people try to take pictures because I always look so UGY.) but this is important. Maybe I could have videocams all over the house and edit the nasty parts later (eg. why not protray my inability to sit on the toilet and pee whwn the RLS is bad?). First a person who is wirhdrawing from opioids - not too exciting, people have seen this before. Then the baseline condition, this is my RLS. WIll I even be able to sleep in the mornings, or is that hope lost to me.. ..Then the plane trip Yellowknife to Baltimore - wow that should be interesting with no meds. Then the whole study in the hospital , two nights and on day of torturel then SWEET SWEET relief.

So films all the way, edited heavily to get some points across - like, this is not a trivial disease - and interviews with experts to get points across too, and to increase the value of the video, to the point that perhaps even the video could be used in training doctors - the patients point of view 0 and in training newer doctors.

Wow zopiclone leave noting behind no horses standgin
I wasn't to elaborate but cannot noe; Tell me what you thnk! Give me advice how to set this up:! I know a coule young people who could do flilming, interviews.

[badnights]

Lord, I have to make sure I never, ever again fool myself into thinking I'm intelligible after I've taken zopiclone. Shall I re-write that or is enough of the idea understandable?

[Polar Bear]

Beth, your post is perfectly clear... Your zopiclone gave you a wonderful flow of words.... lol
I understood exactly what you are getting at, and I love it. You are going to be putting yourself really through the mill.
Its that plane journey... OMG !!! you will be wanting to stick pins in your legs to alter the symptoms.

Oh my !! the idea of filming it - fabulous. An explanatory movie to be used to advise and teach. To show once and for all the hellish times a sufferer may go through.
To E X P L A I N ,,, I am so excited at the thought of it. Experts to put the medical side, you showing your suffering, all of it to portray how this diseaase can destroy and ruin.
Beth, you will be a wonderful advocate. However, I do think it would be a very emotional rollercoaster and full credit to you for being willing to go through this.

I know nothing about how this could be set up but I hope so much that it could become a reality. Oh.... I'm jumping up and down with excitement at the idea of such a film and to be done by someone who knows, who knows what the docs need to see, and indeed our friends and relatives..... at last people could see and understand.

What else can I say, I feel a lot... but can't find the words. Yeeehaaaa....

[majoraward]

"why not protray my inability to sit on the toilet and pee whwn the RLS is bad" OMG that is so funny! I am of course a guy so never knew of that particular problem with gals but I have the same problem standing up. I have had to learn to be able to stop and start inbetween my restless leg spasms or I won't hit the toilet. - not very funny though in reality, just another one of those strange RLS/WED realities.

I like your plan with the cameras. If I had a week off from work I might try it, no doubt it would be a hit on YouTube watching me fall to sleep while walking, falling to floor, jerking awake on the way down, and getting up and pacing once more. Actually with the time being recorded while shooting it might actually prove my case that it is serious.

How would you fly though? You couldn't take medications, I just don't see how to do it. Maybe have someone drive you with frequent stops.

[badnights]

The flying is the part I haven't figured out yet. I think I might have to fork out some real cash, and go down BEFORE I go off my meds. Go off the hydromorphone up here, switch to pramipexole to tide me through the opioid withdrawal, fly down on pramipexole, then withdraw from pramipexole down there...

One thing I know I would need, I would need someone with me, to speak for me, because I will be incoherent, and perfect prey for anyone with a cruel streak. I am thinking of one of my sons, who (I think) also has this disease, but he would need to take time off work, and need to believe that this is worth doing. He could maybe also film some of it, but I'm not sure what equipment is needed for that. However, another young man, the son of a guy I used to live with so he's close to me and my sons, has gone to film school. He's working as a journalist now, but used to want to do a documentary. If I can't convince him to be involved (he's be great to interview the doctors and such!) at least I can find out what equipment we need.

I'm glad you think it;s a good idea PB! I wasn't sure if I was just being crazy. If anyone has any more comments, how to do it, how I could make it better, or why I shouldn't, I'd love to hear these things.

[rthom]

I think it's a great idea--was racking my brain to see if I could do the same or help you in any way but sounds like the folks you have in mind are great (I'm one of those who tries hard with a camera but really I get ne good pic in about 500. lol--just don't tell me that since I seem to think my pics are the best--lol)

I can listen though when you want out or th kill someone etc.

[majoraward]

I looked at the material that you provided and I have 2 questions:

From the material you uploaded:
"During this time they will be asked to sleep on a regular schedule with times going to bed between 21:00 and 01:00 and 6.0 to 10.0 hours in bed for 5 out of 7 nights."

How would ANY person with moderate to severe RLS/WED stay in bed for 6 to 10 hours a night for 5 out of 7 nights?
This is when they have taken no medicine for several days.

The second question I have is when is the study? I didn't see that information anywhere except some of the literature was created in August of this year.

[ViewsAskew]

Wow - if I took LSD I couldn't imagine myself doing what you're thinking of doing. I think I'd rather be a suicide bomber! I am impressed, Beth. It really would be awesome. I really don't think I could do it willingly and knowingly. I've done it unwillingly or because or medication issues and not sure of the results....but to knowingly do it...I'm too weak!

[badnights]

I might be too weak too, I haven't done it yet, don't forget! And I haven't felt bad symptoms in a couple years, noting like the hell when my neurologist disappeared - when I first posted on this board, come to think of it. It's like having a baby: as I was in the agony of it, I clearly remember thinking "Women CHOOSE to do this again?". But you forget.... So maybe I will realize on day one that I can't continue.

but that's why I want to have someone with me, and that's why I want to film it : no one knows how terrible it is. No one understands, not even the specialists, that it's TORTURE. If I'm going to sacrifice this much of my life and sanity (hopefully the latter will be recoverable), I want to get as much out of it as I can.

As for the study protocols, I think those guys , although they might realize the issue, they can't help it - they're doing all these studies on mild cases, because it's next to impossible for moderate to severe cases to deal with the lack of meds; so they have no data from severe cases, and those data might change everything! They need to somehow study severe cases, we might be very different!

I asked one of them (via the provided email address) regarding the two nights of sleep monitoring on site : what if I don't sleep at all? And she replied that would be fine, they were actually expecting that. The at-home monitoring will be the same, I expect. I will go to bed when they say, but I'll move when I have to, I'm not going to force myself to lie there and explode!

The study will be going on for 3 years, so they will be accepting people for a couple of years yet. They don't do everyone at once, they schedule the volunteers.

this is all still so tentative. I will need a lot of support to do this. I need my GP to fully understand, and I need the study's physicians to totally get what I am doing. And all that done, I am still not sure I can do it. I just know that I want to, quite badly - I want the world to see how bad this disease is. God I want that, I want to say to them all SEEEE???? SEE HOW WE SUFFER??? What do you mean I need to see a shrink?? What do you mean I should relax???? What do you mean you won't prescribe an opioid YOU WANT ME TO STAY LIKE THIS??

ouch
I want them all to know, so badly

[majoraward]

I might be too weak too, I haven't done it yet, don't forget! And I haven't felt bad symptoms in a couple years, noting like the hell when my neurologist disappeared - when I first posted on this board, come to think of it. It's like having a baby: as I was in the agony of it, I clearly remember thinking "Women CHOOSE to do this again?". But you forget.... So maybe I will realize on day one that I can't continue.

but that's why I want to have someone with me, and that's why I want to film it : no one knows how terrible it is. No one understands, not even the specialists, that it's TORTURE. If I'm going to sacrifice this much of my life and sanity (hopefully the latter will be recoverable), I want to get as much out of it as I can.

As for the study protocols, I think those guys , although they might realize the issue, they can't help it - they're doing all these studies on mild cases, because it's next to impossible for moderate to severe cases to deal with the lack of meds; so they have no data from severe cases, and those data might change everything! They need to somehow study severe cases, we might be very different!

I asked one of them (via the provided email address) regarding the two nights of sleep monitoring on site : what if I don't sleep at all? And she replied that would be fine, they were actually expecting that. The at-home monitoring will be the same, I expect. I will go to bed when they say, but I'll move when I have to, I'm not going to force myself to lie there and explode!

The study will be going on for 3 years, so they will be accepting people for a couple of years yet. They don't do everyone at once, they schedule the volunteers.

this is all still so tentative. I will need a lot of support to do this. I need my GP to fully understand, and I need the study's physicians to totally get what I am doing. And all that done, I am still not sure I can do it. I just know that I want to, quite badly - I want the world to see how bad this disease is. God I want that, I want to say to them all SEEEE???? SEE HOW WE SUFFER??? What do you mean I need to see a shrink?? What do you mean I should relax???? What do you mean you won't prescribe an opioid YOU WANT ME TO STAY LIKE THIS??

ouch
I want them all to know, so badly

As I mentioned in an above post I offered to fly to Australia for a sleep study once and was rejected because I was not local, so at least this one is fairly local, just halfway across the USA I am interested in it but I will have to work a few things out. First I will need to go back to the Iron Infusion doctor in February and see if he is giving me another infusion and what it does. I am feeling incredibly good lately, I think the infusion must actually be doing something. Anyway, I agree that they need people with severe RLS not the mild patient that they will end of getting so I will see if I will be able to do it. I might be able to take a train. If I save up my vacation my wife and I might be able to go on the trip, we have always wanted to ride in one of the overnighter sleep cars. We could film it too. If nothing else it would show the world through YouTube what we go through when we aren't taking meds.

There is a lot to it though and many places for them to kick a person out of the program but I am seriously thinking about attempting it. I might fail the first interview lol.

[badnights]

no, no, do enquire about it! for two reasons, one is that these studies need more of us who are severe, other is maybe we can combine clips of your film and mine. I am looking to see if there is any funding available for making a documentary, it's a long shot. They had no problem that I was in Canada, and over email suggested travel costs might be covered, but I notice that their official material doesn't promise any such thing.

[majoraward]

no, no, do enquire about it! for two reasons, one is that these studies need more of us who are severe, other is maybe we can combine clips of your film and mine. I am looking to see if there is any funding available for making a documentary, it's a long shot. They had no problem that I was in Canada, and over email suggested travel costs might be covered, but I notice that their official material doesn't promise any such thing.

My first stumbling block was put before me yesterday. I haven't mentioned this to my wife yet because I am not writing them until the end of February after I find out what is going on with the Iron Infusions.

Yesterday she says to me, "Maybe since you are doing better now you can save up your vacation so we can go on a real vacation this summer."

When we were talking about this I was thinking at the same time about telling her:

"How would you like to go on a vacation with a madman across the United States by rail in a cramped sleeper car? A madman who has not taken his medications for a week, a madman who can not sleep or lay down when he doesn't have his medications after a couple of days. Oh, and by the way, you will be the cameraman for the documentary we will be making."

I am assuming that it will only be by train one way because as soon as this thing is over I would be gulping down my pills and be sane again within a day or two. Then we could fly home.

So there are definitely some issues to work out

[debbluebird]

Beth, it will be remarkable if you are able to do this. The times that my WED and PLMD was bad I thought I would loose my mind. I don't know if my other health issues would disqualify me. Plus, I wouldn't be able to afford covering any expenses myself. Without meds I would probably look like someone who is possessed. I would be someone they would burn at the stake. The thing about going off the meds, I would taper all of your meds when you go off of them. I know that when I've tried to make changes and it back fired, it didn't always work when I went back on the previous doses.
Good luck to you. I wish I could help in some way.

DEB