• Phoenix Rising needs funds to operate: please consider donating to support PR

Training videos for English GP's on how to deal with CFS patients

Calathea

Senior Member
Messages
1,261
Likes
783
Timing was more my issue with sleep, I have Non-24 Sleep-Wake Disorder so I was running on 25 hour days. I found that light therapy and darkness therapy work really well for me, so my sleep sorted itself out quite nicely. When I was coming off gabapentin, though, my sleep was horrendous for months.

I don't sleep dead on 8 hours every night, but it's usually 7-10.
 

Leopardtail

Senior Member
Messages
1,151
Likes
864
Location
England
Timing was more my issue with sleep, I have Non-24 Sleep-Wake Disorder so I was running on 25 hour days. I found that light therapy and darkness therapy work really well for me, so my sleep sorted itself out quite nicely. When I was coming off gabapentin, though, my sleep was horrendous for months.

I don't sleep dead on 8 hours every night, but it's usually 7-10.
I have some fantastic 'blackout blinds', get a warm bath before bed every night, and a light-box on a timer. It produces some improvement. For me all that works is Melatonin, I don't seem to produce enough of it. When I sleep too long it deepens and shortens the sleep. When I sleep too little it lengthens the sleep.
 

Calathea

Senior Member
Messages
1,261
Likes
783
I'm not talking about blackout blinds, though those are good, but about darkness therapy. It means that I get no exposure to blue light for 3 hours before bed (orange glasses and lighting). That way my body produces its own melatonin. You can Google it.
 

Leopardtail

Senior Member
Messages
1,151
Likes
864
Location
England
I'm not talking about blackout blinds, though those are good, but about darkness therapy. It means that I get no exposure to blue light for 3 hours before bed (orange glasses and lighting). That way my body produces its own melatonin. You can Google it.
Thanks for the tip re the glasses - I will look into that.

I am very interested in Melatonin production in ME (as part of wider biochemistry). Would you mind telling me what your fatigue level was on this scale before and after sleep problems? It would be of great help in a research project I am putting together :)

BTW my wake up light is a 'plant light' combined with a genuine full spectrum fluorescent tube producing very large amounts of red and blue light and I found that made a huge difference. It is a bit of shock to the system when it comes on (in winter) though.
 

Calathea

Senior Member
Messages
1,261
Likes
783
I wrote about it in quite a lot of detail at http://insearchofmornings.wordpress.com/ a few years ago. I can't remember where I was on the scale, it was years ago, but improving my sleep definitely improved my health. Full-spectrum lighting isn't actually helpful, by the way. It's blue that's relevant. I'm about tired to go into it now, but it's on the blog.
 

Izola

Senior Member
Messages
495
Likes
580
@Leopardtail

OMG. you, too, w/the sleep malfunction? I really didn't think that any one else thought a good night's sleep was 72 hours long.

I get the 72 or so hours after my Dr. apt. By the time I get home and in bed I am in screaming pain and so weak I can hardly move. Sometimes I flop on the bed partially paralyzed.

But I can't sleep until the adrenaline surge passes. Then sleep is so comforting.

By all rights, we should be depressed, but the only depressed ME person I ever knew turned out not to have ME.

Sleeping pills work, sort of. They have cut the dosage of Ambien by half. I guess some people were not waking up fully and going to work half asleep.

The 5 hour nights (mine are 6 hours) are the bad times. Sleeping pills can initiate sleep sometimes, so I use 2/3 tab to go to sleep and the last 1/3 to continue sleeping after I wake up too early. I can get 8-11 hours out of that but 11-12+ hours feel best for me. Maybe because I often have a 24-36 hour day somewhere in that week. "Week" is somewhat loosely defined.

I think I would end up severely depressed if I did not notch up my sleep time.
 

Izola

Senior Member
Messages
495
Likes
580
@justinreilly
No neuro-problems? Seizures caused me to smash my keyboard, recently. I scotch-taped the essential keys back on. Very iffy, esp since I can hardly see and my hands have their own little spastic seizure dance.

No neuro-problems, huh? iz
 

Izola

Senior Member
Messages
495
Likes
580
@Leopardtail

Hj: I am embarrassed. I was on another thread and must have dozed off a bit. Somehow I ended up on this thread. You all have me whipped in sleep management.

On my behalf, I did spend almost 3 years in a semi conscious and then only a vaguely conscious state. Who knows what I am in now.

I have a problem that I am avoiding thinking about so I am recklessly posting. Sorry.

I have no idea how I got on this thread today. Must have dozed off and time tripped backwards. iz
 

Izola

Senior Member
Messages
495
Likes
580
@Scarecrow
Hey, Scarecrow. Thank you! Do you know my post was in response to a post made about 5 1/2 years ago? It's good we don't drink alcohol. Who knows what I might have been up to. Cheers. iz
 
Messages
38
Likes
87
Here's an extract:
=============


They don't have evidence at all that doing such activity when feeling unwell is safe.
Keep in mind that Dr. Gerada, besides being Simon Wessely's wife, was the enormously influential head of the GP's union who helped usher the Wessleyite theories into preeminence in government. Meanwhile British pundits are tearing their hair out over the question of why Britain is not successful in technology. Duh. Could they have lost track of the scientific method? Medical principles like first do no harm?