Do you have an odd sleep/wake cycle?

[Dagen]

I know we are all more than tired and often have a level of fatigue that is hard for others to understand but my brain and body wants to sleep more during daylight hours for some reason. My brain has always (since I was a baby) been reversed as far as sleep patterns go. I'm exhausted all day but around 8pm or so, I'm wide awake and often can't fall asleep for many, many hours. I was just wondering if others had an issue with their natural sleep/wake cycle. I feel like I always have jet lag even when I don't leave the house!

[loulou123]

i have a really bad sleep pattern one day im so tierd all day and just wanna sleep the next day im up all hours have no energy either but feel so weak all the time to i got told i had a p s two years ago and the clots have never let up had nine in all despite being on treatment im going to ask my hospital doctor for a second oppinion as i carnt deal with the way i feel right now jackie from m anchester

[tassie]

sleep? What's that? I can fall asleep watching TV but go to bed and its another story. If I do get to sleep I'm awake every 1.5 to two hours, wash and repeat.

[Dagen in reply to tassie]

Tassie, I hear you and it's horrible, isn't it? I thought the waking up all the time was because I had children and was never able to shut off my mother-protective hyper-hearing ability (that wakes me at the sound of a pin drop) since they were born, 9 & 13 years ago! I just don't want to be tired anymore, it's really getting old! :-)D

[Dagen]

Jackie, I'm sorry to hear you are feeling badly; I have the same issue and no matter what I try to do I can't seem to maintain any normal sleeping pattern. I've tried Melatonin, a natural supplement that is supposed to help keep your circadian rhythm on track but it didn't really do the trick for me. I don't like taking otc or prescription sleeping pills because they make me feel 10X's worse the whole next day; it feels as if the effects of sleeping pills stays in my system for a really long time.

I would certainly encourage you to get a 2nd opinion and hopefully with that will come a treatment plan that works well for you. I live in the DC Metro area of Maryland and I have yet to find a doctor here that truly understands the full extent of danger APS patients can be in when they aren't properly diagnosed and treated. I wish you well and (if you are comfortable sharing) please let us know if you find a different treatment plan that works for you. :-)D

[Elaine77c in reply to Dagen]

I have had bad sleep pattern for years, I have now found that 3mg of melatonin (sourced from internet) plus one 2mg Piriton (or Boots alternative) work for me - must be Piriton not Piritease or any of the non-drowsy alternative antihistimines. I know they work as if I forget to take them, I go to sleep then wake up an hour or so later and then just stare at the ceiling for the rest of the night, unless I remember I forgot!!

[Coppernob]

Interesting that Dagen says she(?) feels 10x worse the day after taking a sleeping pill. I actually find that taking a little temazepam when necessary usually gives me a real boost of energy the next day. So much so that I have to be careful not to overdo it.

Maybe it's partly a question of dosage levels. If I find I need a temazepam I'll often only take 1/4 of a 10mg tablet. It's very rare indeed that I need a whole tablet or more.

[GinaD]

Since I was a child my preset sleep cycle is go to bed at 8 pm, wake up around 5 am. My Grandfather was the same way - but it got worse as he aged. So, after retirement, back on the Farm, he was in bed often by 6 and up by2-3. He called it " the curse of the Davis'" and predicted I'd be the same way.

Yep. Except I'm not that weird . . . Yet. Off to bed between 8-9, up between 5-6.

But it's an officially diagnosed " thing " now: " Advanced Phase Sleep Disorder."

There. We have a name for it.

[Hidden]

Yes tired during the day. I sleep badly due to discomfort caused by pins and needles on the side I am lying on. I can't get into a comfortable position when lying down and get woken many times at night. Researching blood flow and inflammation I found out that the blood circulates more slowly when resting so inflammation will be worse. Fast blood flow = low inflammation. Hence one of the reasons blood thinning works I suspect.

Exercise is good especially when done regularly but not to excess. However it is a question of overcoming fatigue in the first place.

[Hidden]

I also have had problems sleeping and put it down to other reasons but was told today by my psychologist that pain also contributes to lack of sleep. It isn''t just lack of sleep, I always feel exhausted during the day.So I am glad (well not really) that Hughes Syndrome is causing it because I can put it down to my APS.

[MaryF Administrator]

My sleep pattern is crap, but I just go with the flo, if something is in flare, sleep eludes me when it passes I sleep more. Mary F x

[Hidden]

Just today at the dinner table my father in law attacked me for the amount of sleep I say I need. Just too tiered to argue any more. I need to get up by 8, but the house is to loud to sleep before 1am. Not enough for me. As I don't work Sundays I sometimes need to sleep all day. OK, others might manage on less, but I can't.

Medication always seems counterproductive, if it helps me sleep, the effects won't shake the next day. One thing that does help a little- avoiding bright lights close to bed time (so brush teeth in dark) and if you need to sleep but it won't come, a slightly boring audio book will at least allow muscle rest.

[Dagen in reply to Hidden]

Alison, I know exactly how you feel. I often wonder if being so exhausted is only in my head, but after a few seconds of thinking that way, I laugh at myself since I've tried everything I know of to combat the fatigue. Throughout my entire life this has been a challenge and like you I'm not rested after 8 hours of sleep- at this point I don't believe I'm ever fully rested. Good luck to you Alison, I hope your Father-in-law eases up on you- maybe print some of this out so he sees it's not just your problem, or depression (although a lack of restorative sleep will depress anyone) it's not the cause but perhaps a symptom APS. Best, D

[Hidden]

Thanks, my mum used to tell me it was in my head - not in a bad way, she just meant I could fight it (she also has APS, diagnosed after me, during an unexplained collapse - so she did understand) once, as a kid, I told her 'of course its in my head, but that's the important bit of me'. As a student I regularly got 10 or 11 hours sleep, and I was much more productive. Also, when I'm well rested, I'm not going to get upset by ignorant comments am I?

So let's all agree to insist on being allowed the sleep we need, when we need it. You should not have to spend a life time feeling like life is an uphill battle, when an extra hour or two a day could make a massive difference - so sleep well!