Behcet's Syndrome Society
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Can't sleep.... thank god I have got this forum

I have had a terrible problem for years with not being able to sleep.

But now this forum has started up I can sit here at whatever time in the morning and answer/contribute to other peoples questions and blogs.

It is kindof like having someone in your front room.

Just as well that you are not actually in my front room as I virtually naked from having woken up with sweating ;)

It sort of clears my mind and sometimes I can go back to sleep again.

I am wondering how other people get through the night when they are not able to sleep. How they cope with not sleeping.

8 Replies

Hi Andrea

I keep saying to all the doctor's that I'm a great believer that if I get enough sleep I can cope with the next day.

As well as pain killers I take 25mg phenergan (if that doesn't work I can take an extra one), that seems to be working fairly well. Until recently I was taking 5-10mg Temaxepam, which was readily prescribed, however it was suggested I switch to phenergan as apparently it isn't as addictive.



Hi Andrea

You and me both! I regularly find myself awake in the small hours and have to get up so I don't disturb my wife. I sometimes browse the internet or watch a program I have recorded. I sometimes have a warm drink and a piece of toast as this seems to comfort me. I am getting better at coping with poor sleep but my user name says it all. I must point out my children labelled me with Grumpy many years ago before I found treatment. I'm a lot happier these days but Grumpy kind of stuck!

I also find meditation helps me. I listen to a relaxation track on my iPod and this helps me to get back to bed and sleep. I used to have sleeping tablets but I was concerned about dependency so I stopped them.



Me too! Last night, in fact, was the first night's sleep I've had for over a week. And today I feel absolutely dreadful, that ain't right is it!

Most nights you will find me (dripping in sweat too) sat in front of the computer or doing as Grumpy does and making myself tea and toast. The old man gets cross and says I should just stay in bed anyway cos at least that's resting. I think he doesn't fully understand the situation. And anyway, the sheets and duvet are all wet...


When I cannot sleep: phone games with current favorites being Bubble Bust! and Angry Birds Space. We could play Scrabble together during your sleepless nights ;)

With my upcoming Doctor appointment my anxiety level has fingernails are embarrassingly ragged. Middle of the night Manicures and Pedicures...epsom salt soaks feel so great!

Breathing and meditating like Grumpy tends to work if I am in discomfort.

Inspector Lewis on my Apple TV (LOVE Inspector Lewis)...however, definitely contributes to my nail biting.

If things are just going wrong with my body and I am feeling sad about it then I will take 0.5mg Klonipin (US) and make sure I have a babysitter in the morning (sedation seems to last I really do not like the fatigue aspect of anything).

Andrea! Hope you are sleeping soundly this evening and the sweats are at bay.


I have tried sleeping pills although, they make you somewhat drowsy in the morning..If im really wound up then i listen to dido, no angel on as low a volume as poss.. which i find strangely comforting.

Im in bed by half ten every night and up at 7-7.30am every day and generally im up 4-6 times a night every night, when I do have a full nights sleep im on top of the world and the most wonderful day unfolds in front of me...which is just about never,, but I really look forward to those days!!!!

For now its two co-codamol before bed and me thinking of something really nice and relaxing to fall asleep to...


Thanks everyone

For these idea's and info...I too feel so much better if I manage to get back to sleep at all having woken around 12 - 2 o'clock.

It makes for a really long night and a very rough day.

Thanks supernova for the offer of sounds great but have never actually played games online with anyone before......also you would have to let me off with my bad spelling which came along after being diagnosed with Neurobehcets.

I know any excuse ;) don't sound grumpy to me and I don't use sleeping tablets or muscle relaxants either as they affect my breathing and weak muscles.

Please keep the ideas coming



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Hi all. What stops you all from sleeping.....? I too wake with sweats regularly but am finding at the moment that after about an hour asleep in one position I wake up sore everywhere / every bit of my body that I have been lying on including my ears....! RIDICULOUS.....! Is this what wakes you all or other things....???


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