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Posted 3/19/2014 2:58 AM (GMT 0)
So obviously when in a flare I'm exhausted and I do sleep all day, BUT since I've been diagnosed (2 years ago to the day) I've developed insomnia... So when I'm not in a flare I'm up, all the time. I get maybe 2 hours of sleep a night and have tried melatonin, Benadryl, and zzquil, and sometimes higher doses of those. Occasionally they help me get about 4 hours of sleep, but not any more. I've talked to my pharmacist, GI, and pediatrician, and none of them seem to care... Is there something else I should do or try?
Posted 3/19/2014 3:58 AM (GMT 0)
I find that exercise helps. Are you getting a lot of daily actitvity?
Posted 3/19/2014 4:24 AM (GMT 0)
I wouldn't say I'm getting a ton, but I walk a lot in a day (college student), and I do the basic kind of ab/ core strengthening exercises 3-4 days a week, aerobic class multiple times a week...
Posted 3/19/2014 4:50 AM (GMT 0)
Have you tried the whole set-a-bedtime-routine thing? I know that's hard when you're in college, but maybe having a little ritual to do that helps you wind down would help. I know that lately I am very sensitive to light so I sleep with an eye mask. It has really helped a lot to help me go back to sleep easily when I wake in the middle of the night. Warm milk? Hot tea? Anything that will out you in the mindset of relaxing and settling down.
Posted 3/19/2014 9:23 AM (GMT 0)
Are you on pred or have taken it? In University I barely slept lol. Just cuz of the HW
Posted 3/19/2014 2:42 PM (GMT 0)
I don't have a routine, but I don't watch tv, use my phone, or do any other stimulating activities right before I try to fall asleep. I am on prednisone currently, but this has been a problem for a year and a half not on prednisone.
Posted 3/19/2014 3:39 PM (GMT 0)
If nothing is helping, you can try having a sleep study done to determine the reason for your insomnia. If you're still sleeping all day and awake at night, it sounds like your circadian rhythm is disturbed. You need someone to help you to reset it or look it up online to see how things can help.

I also suffer from insomnia and have had it for nearly 10 years. I used to take Ambien but I was doing strange things in my sleep. Now I take CVS brand sleep aid. Mine was determined to be a combination of hormones and Fibromyalgia.
Posted 3/19/2014 3:49 PM (GMT 0)
Not sleeping sucks!

I have had sleeping issues since I was 16. I have never had a sleep study done because (to my fault) I've always believed they wouldn't be able to produce accurate results in an artificial setting, as I always sleep much worse when I'm not in my own bed (e.g., I never sleep well when I travel).

Anyway, I have tried most of the recommended solutions--melatonin, Ambien, Tylenol PM, meditation (which I hate), exercise (which I do regularly when I'm healthy), visualizations, etc. The only thing that has helped me (unfortunately) is Trazadone, which I have now been taking for five years. I don't like to encourage anyone to take medications, but that is what has worked from me. And in full disclosure, I have tried to get off Trazadone in the past (because I hate being on meds in general) and was unable to because I didn't sleep when I lowered my dose too much/stopped taking it.

I would agree with Sherry that a sleep study might be the best option. I'm sorry that none of your doctors seem to care, but I would be very firm in describing the negative impact this is having on the quality of your life, especially your school and home life.
Posted 3/19/2014 4:43 PM (GMT 0)
I think sleep studies are not worth it. A lot of them will tell you you have breathing problems and send you home with contraptions. I tried trazadone. It worked for a month and then nothing even at higher doses. Low dose seroquel worked for three days only. And I've tried benzos before. I am now taking zyprexa (an anti-pyschotic for bipolar) and melatonin. Am sleeping great now.
Posted 3/19/2014 6:29 PM (GMT 0)
Some solutions that were effective for me have included Valerian root extract (also an anti-anxiety supplement) which is sold separately and as part of many "herbal" sleep aids. I also have had good luck with prescription anti-anxiety pills like Clonazepam or anti-depressants like a low dose of Doxepin.
Posted 3/19/2014 10:39 PM (GMT 0)
Personally for me...I tried Valrian Root extract and it caused D..majorly. It's one of the possible side effects unfortunately.
Posted 3/23/2014 6:45 AM (GMT 0)
When I developed UC in 2006 I instantaneously seemed to lose my ability to get tired as a normal person. I attempted to self treat with nightly benadryl for 2 years prior to the UC, which wasn't fun at all but did sometimes work.

All I know now is that I was tested for the mthfr mutation, and I am compound heterozygous for it. I tested through Dr. Amy Yasko.

I began taking supplements as part of her "Step one" protocol. I am taking GABA and her becalm spray, and for the first time in 10 years I am getting sleepy at night like a normal human being.

I would look into it, and I'm also willing to bet you have sky high histamine levels and would benefit from going gluten free.
Posted 3/24/2014 9:17 AM (GMT 0)
Insomnia has been a way of life for me since I was in my teens. It's very cyclical, in that I go for weeks getting great sleep, and then weeks of getting 3-4 hours a night. I typically fall asleep on a routine schedule but wake up at some random time and can't fall back to sleep. I too wish I knew the answer - nothing has worked for me, and I am sure that I would become drug dependent if I tried prescription medication.
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