Insomnia.... any suggestions?

[Calli]

If my urethra keeps burning or my bladder keeps feeling full, I just cannot sleep. It seems it gets worse sometimes when I lie down in bed. So its better to get up, even if it is night. But after a couple of nights I get so tired that I can't stay up. I even got so frustrated last week that I started to cry and threw up from being upset and hyperventilating. My boyfriend couldn't calm me down, nothing. I do not use sleeping pill at such times, because it just doesn't work. I am drowzy and dizzy and my brain and body is screaming for sleep and rest, but it gets so bad in bed, especially if I lie on my belly, don't know why lying on my back is better.

It is like a vicious cicle and then over the day I am a zomby and my bladder feels much better. My Urologist send me a recepy for Diazepam, a drug for sleeping disorders, relaxing of muscles, a calmer and it also works for people who have epilepsy - its for all that. Even despite that one, I couldn't fall asleep. After 2 days teh bladder calmed down and since then I am sleeping with only waking up and going on toilet about 4-6 times a night, which is great for me. But the thing is this:

Diazepam is just like sleeping pills, you can't take it all the time, you get used to it and it eventually stops working.

So my question is: do you have any advice? Are there any medications that help with sleep and relaxation and you can take them endessly? Remember that I am in Europe so if you knwo of any such medication, please put in th elatine name and substance.
Also any advice on what I can do myself.... anything.

I can take burning and all the rest of it over the day, but not if I don't sleep at nights. That is the worst thing for me.

The last 3-4 days were great, I was sleeping nicely, but I take Diazepam before going to bed. I can only take it for another 2 weeks and after that my doc is taking me off it. *sigh*

[theclownster]

Hi Calli! I responded to your post on the newly diagnosed section. In there I mention sleep.

Hope it gets better for you!
Jennifer

[kadi]

Hi Calli,
Oh, yes. I felt like that back in August & Sept. I'd try to sleep sitting up because every time I lay down my bladder spasmed even harder. Felt like I had an angry butterfly in there... One night, I even tried to sleep upside down with my feet on a mountain of pillows & my head hanging off the bed because in my sleep-deprived state I thought it might relieve the pressure. (It didn't, but I'm just telling you that anybody can become desperate and hysterical...) Your upset makes perfect sense to me.

What helped me sleep is a combination of amitriptyline (10 mg to start, now 20 mg) and oxybutynin (5mg) taken about 45 minutes before bedtime. If I'm not flaring I can sleep well, only getting up once or twice to use the bathroom. Most days it works well. It makes me quite drowsy and I need to take it by 9:30pm at the very latest to be able to wake up well at 6:00am. But I'm fine to drive to work then. It started working for me about 5 days after starting to take it (along with the diet changes I was making at the time).

When having pain or frequency, sleeping on your side with a small pillow between the knees can help, an ice pack or heating pad for the pain, no underwear to constrict or bind, having something for distraction, like a walkman w/headphones- I listen to cassettes on healing or relaxation/meditation...

Hope those suggestions help a little. The lack of sleep is, I think, the worst of the symptoms, because it makes everything harder to deal with. I hope you & your doctors find something that works for you quickly!!

Wishing you better days soon!