Behcet's Syndrome Society
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anyone have general help with insomnia/sleeping. I think a lot has to do for me is the pain. I got a new bed to help, harder bed because the tempurpedic top was not good and when i go to lay i can feel my lower back rubbing against itself. Pure bone on bone and then when i am laying i take my nightly pain medications and I know for me i get the paradoxical effect and sort of have energy. Stimulants make me go to bed haah. I was taking sleeping medications and got off of them due to all the other medications. I know prednisone keeps you up and I take it at 7 am so that way it wont keep me up too much. I have never tried to take it night because i think that it might keep me up. I have taken extra prednisone about 5 pm if lesions are starting to form and that kept me up. I tried ambien, lunesta and sonata. I tried the natural remedies such as st johns wort and melatonin. Nothing really there. I try to drink alot of water and keep sugars away. I know that I cannot exercise before because that gets em all hyped up. I also take my Androgel for my hormone replacement at 7 am because I know that can make you restless and I know it really effects my anxiety very bad and same with prednisone. I never had anxiety before prednisone. Thank you

7 Replies

Oh dear, we do have similar problems! I have not yet found a solution and have, once again, been up all night. It is sometimes soul destroying - I am exhausted and have difficulty keeping my eyes open but my brain refuses to sleep. At the moment I have pain issues due to urethral ulcers and so I'm taking Tramadol, which is the only thing that goes anywhere near relieving the pain (I have to self-catheterise too, which doesn't help). Anyway, guess what? Taking Tramadol is like taking amphetamines for me. Deep joy...

If you do find a solution, do share!


Well if inside then might they have suggested pyridium or phenazopyridine. It's now over the counter as well. which numbs the urethral path. It turns your urine orange but numbs it. Wow only traumas ol huh!!! They sure don't deal with pain how they should. I'm up as we speak but remedies have just been reading and over the counter sleeping meds. Traumas is maybe the only non narcotic to help with pain? The solutions are what make you happy, as little as they may be a win is a win. Luckily your not a male and self catheterizing seeing our urethra is 4 times the lengths.


They put me on amitriptyline which I take 2 hrs before bed, sometimes it helps. X


Hello there, I have set up a pair of speakers either side of my bed on speaker stands.

I have found several apps for my Android tablet computer including the Calm Radio app.

There is a channel especially called "Calm Sleep".

I sleep very badly due to pain but in the last week I've been playing the Calm Radio channel on a fairly low volume and it definitely has helped a bit.

There are loads of different channels to choose from so you should be able to find something that you'll find restful.

Can't call what I'm hearing music as such.... more ambient restful sounds that combined with pain meds at 2am I'm getting around an additional hour.

Still waking up as though rigor mortice has set in so I'm still doing my involuntary impersonation of a zombie.....

Hope this is helpful for you. Just search Google for Calm Radio and you'll find the website. The app is free.


I agree with Hervi4. I use Audible on my iPhone to help me settle into sleep. You can register with Audible for £7.99 where you get a credit for one book per a month it is a good deal as the Audio books tend to be around £14-19 a time.

In addition I have a fan in the room in case I become too hot.

I also take Amitriptyline before I go to bed.


Should have said that I take Prothiaden, Celebrex, Colchicine, Tramadol with Paracetamol as well as Pizotifen at night but I never get more than 90 minutes of sleep at a time due to pain. So, some gentle distracting sounds just helps. I also use the TuneIn Radio app and I listen to national public radio over in the USA. As with audio books, having talk radio on quietly can be as good as ambient music. Rhod Sharp on BBC Radio 5 Live from 1am until 5am is also excellent.....


It looks like quite a few of us have very similar sleep problems, afraid I have no extra advice; just want to add myself to the list in solidarity.

I to take amitriptyline 50mg at night, I take it for pain control; but as with sleep it sometimes helps; like it sometimes helps with pain.

Usually I sit up in the early hours burying my head in computer stuff, I find distraction can sort-of help me ignore the pains - except the Behçet's headaches (mainly caused by my eyes, I had better add; I mainly listen to what is going on on my screens.) any-ways the headaches make it hard to concentrate - which makes me then focus on other pains :<- It's a PAIN <-pun intended….

Right, I've had my rant, so I'm off, my best wishes to you all.

best regards,



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