Sleep: So for a couple months now I have not... - Behçet's UK

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Sleep

Nicole86 profile image
10 Replies

So for a couple months now I have not gotten a good nights sleep. I've tried lunesta and melatonin but I'm still awake at night. Having bechets I do rest a lot but I also do as much as I can when I can physically do so. Anyway do any of you have a good way to get a good nights sleep?

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Nicole86 profile image
Nicole86
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10 Replies
devonshiredumpling profile image
devonshiredumpling

My sleep was dreadful too, until the GP prescribed amitryptiline to prevent headaches, they made me so sleepy that I've had to stop them (which is why I'm awake at 3 a.m.!)

My problem is that I get 'Behcet's Tiredness' during the day and sleep most of the day away but then, of course, I can't sleep at night. The daytime sleep just won't leave me alone and if I try to beat it I end up sleeping in some very strange (and frequently dangerous) places. But the amitryptiline just made me like that at night time too - from half an hour after taking it until about 3 hours after I got up.

Might be worth a try though because we're all different in our responses.

rosshi profile image
rosshi in reply todevonshiredumpling

Got to ad I'z on amitryptiline 50mg- 100 and it can knozk me out but only when it chooses too

Nicole86 profile image
Nicole86 in reply todevonshiredumpling

Hi! Thanks for your response! I can totally relate to the day time tiredness it's almost like my day is night and night is day it's very frustrating! I have also fallen asleep in places I shouldn't or that could have been dangerous. I was having lunch with my mom once and was nodding off of course not on purpose and thank goodness we were at the house not at a restaurant my mom understood and I slept for 5 hours! It's just so crazy sometimes. It also seems as if my joint pain is worse in the night and muscle cramps are horrible my next PM appointment I'm going to see if a muscle relaxer would be helpful!

rosshi profile image
rosshi

hello kindred spirit,

cant say I am up all night for months but it can goe on for a good while... am in the zone right now in-fact, I don’t think we have much say to be honest, I just spending the night with Amy Winehouse, the Beatles and others, but is sorta nice to know I'm not the only one up all night, it crazy cos I am quite fatigued but nevertheless am on the night-shift (Bugger) ahhhh Dido - Aria......

I think we and our partners have to live with it... As it's the weekend, a few beers help (me, least ways) sod the pain killers/controller's £0 years and I still got not much of a clue, sorry I have no advice..... But if it helps, your not alone....

my best to yer...

Culata

A→T→B

rosshi

Nicole86 profile image
Nicole86

Yes it is good to know I'm not alone :) I'm very glad I came across this group and joined it keeps my mind busy and provides really good info/advice from people on here it's comforting in a way because not many people can relate to what we deal with. I'm not much of a drinker :/ idk why lol I guess I probably would enjoy a glass of wine which I do once in a while but when I'm feeling ill i can hardly get anything down I've lost a lot of weight since February

rosshi profile image
rosshi in reply toNicole86

hello again Nicole86,

I must add I'm not much of a drinker either, just a few.

I can give a little advice on weight loss, for a long time my weight dropped to seven and a half stone, to help at that time I was prescribed energy drinks, they come in little boxes you drink with a straw, one drink is equivalent to a full meal with all the vitamins and nutrients an adult requires; at my lowest weight point I had three a day,I'll ask my pharmacist; on Monday, what they are called and will post it here.

My problem turned out that one of my medications was making me sick; once or twice a day, this went on for over two years, it was Azathioprine, as it happened I was changing consultants and my new one took me off Azathioprine when I said about the constant sickness, apparently it’s a well known side affect of Azathioprine …. This just goes to show you that Doctors don’t always know everything...

I hope this may be helpful

best regards and wishes to you,

rosshi

bailey23 profile image
bailey23

Hi Nicole.

I also take Amitriptyline at night. This is for headaches but it generally knocks me out as well. I also am tired 24 hours a day but getting proper sleep and not naps for me is so important. Good luck and let us know how you get on!!

Hugs

Angela

xx

Hi, I too take Amitriptyline at night along side another drug, which I take twice a day to control migraines. I find I am constantly tired and could probably sleep 24/7 given half the chance.

Dealing with pain and coping with having BD can be draining enough without not getting a good nights sleep, bless you.

Good luck with your next appointment.

Lets us know how you get on.

Hugs

Clare x x

Nicole86 profile image
Nicole86

Thanks everyone! You've all had great recommendations that I will be bringing up on Tuesday I just hope I get some where with the dr I'm still getting to know him

Michja profile image
Michja

Hi, my 11year old daughter & myself both have BD & both struggle with sleep. I know others have mentioned stronger help but I'm wondering if you have tried a natural herbal tea to drink half an hour before bed. I just felt my daughter is on a great deal of medicine including 6 week IV Infliximab, enough is enough. I think if you are in a massive flair it may not help as well but maybe that's when you use the heavier stuff.

Good luck.

Michelle

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