Falling Asleep

[plmokn]

i just got diagnosed with IC last spring after months of doctors visits test etc... For the most part I have it under control. The one thing I can't get a handle on is the amount of times I have to get up to go the bathroom once I'm in bed/before I fall asleep. Sometimes I have to go up to seven times and on average it takes me an hour and half to fall asleep each night. I'm a college student and I really need my sleep. Does anyone else have this problem and have any advice for me on this issue. I've tried medicines such as Vesicare, I don't drink any liquids past dinner but nothing seems to help.

[Goldfinch]

Hi, it sounds like you are sleeping through the night once you fall asleep but that it takes you a while to wind down and get to sleep in the first place. My daughter is a college student and sometimes she calls me at 11pm, totally wired just from working on a paper. It's hard for her to transition to sleep, especially when she starts thinking about how badly she needs that sleep. For me, I know that sometimes just having anxiety about falling asleep is enough to make me pee more than usual.

Have you talked to your doctor about finding something that might help? Anti-depressants, anti-anxiety meds, muscle relaxants, pain meds and anti-histamines are all used to treat a variety of IC symptoms in different ways. Some of them have side-effects of drowsiness and can be helpful at night; sometimes the dosage must be adjusted so you don't wake up drowsy as well--never a good thing if you have an early class. Talk to your doctor and see if he/she has some ideas for you.

[plmokn]

I've talked to my doctor multiple times and I am on Atarax but it doesn't seem to work. I'm also taking Lyrica at night (which I take to handle my pain symtoms) which is also supposedly a medication that makes you drowsy. The drowsy medications don't ever seem to have real affect on me. The thing is I don't think it is just related to school because it happened to me consistently over the summer too. That said it definitely does get worse when I'm stressed but it is still consistently bad.

[plmokn]

I appreciate your help though.

[kadi]

Atarax made me so jittery that I couldn't sleep & it also gave me a pounding heartbeat, so I don't take that medicine. Weird, I know it makes most people sleepy, but it did the opposite for me. Did the sleeping problem start before or after the Atarax? Basically, are you getting a side effect from it or do you think it's just not working?

What has helped me:
When I first got IC, I'd have to get up to go to the bathroom every 15 minutes all night long. The first night I took 10mg of Elavil, I slept 4 hours straight & I was so happy, I cried! Over time, we added more Elavil (I now take 10mg), Flexeril (muscle relaxant, I also have pelvic floor tension), and home rescue instillations done before bedtime & now most days I sleep ok...

Wishing you relief soon,

[plmokn]

Thanks for the input. I had this problem before I started taking Atarax, and it isn't really helping for the original reason I took (helping me fall asleep) but does seem to help in my pain management. I don't usually have a problem staying asleep like I did when I first started having problems its just actually falling asleep in the first place.

[aprilchen]

Hi,

Vistaril started helping me a lot, but I don't know if it would help you. It IS an antihistamine like Atarax. However, have you thought of trying something like some Ambien CR, Lunesta or Restoril? Those are sleep medications and I can tell you from experience that you're more likely to get a doctor to prescribe those than anti-anxiety medications, which are seen as more addictive (though I think you can get addicted to anything--with the right personality). Good Luck and let us know how it goes!

[elamar]

sound like you might need to try an anti-spasmodic med at night. Ditropan xl (generic version) along with atarax at bedtime worked great for me. For a long time I had to take high doses of ditropan and urelle (generic version is called utria-c). These made that non-stop feeling of urgency calm down so I could finally sleep through the night. Now I just need a utira-c now and then to keep the urgency in check. If you aren't having any issues during the daytime with urgency, you might just need one dose of ditropan or urelle or prosed an hour before bed, along with an atarax. I hope this helps! Sleeping pills did not work for me. I tried ambien and still had to pee all night long. Ask your doctor for free samples of prosed and urelle. They should have them. My doctor gave me a two week supply of each to see if they helped. Luckily they did for me. Good luck to you.

[amaranthe]

I deal with this problem too. I have the same trouble....falling asleep, and then having to get up all night to go to the restroom, making me exhausted the next day.

My other Drs werent much help, so I talked to my PM Dr about this, and he r/xed Ambien CR to help me fall asleep and stay asleep longer. It also helps me to get back to sleep after going to the restroom, since I often still have urgency after I go, making it hard to get back to sleep. The Ambien CR helps with that alot for me. Though my Dr. r/xed if for every night, I try to only take it a few times a week, b/c I dont want it to quit working for me. (We tried to switch out between it and the other sleeping meds, so I wouldnt get tolerant to any of them, but the others just didnt work for me.)

The other thing that he did to help me was write me an r/x for Provigil. It is a med that is often given to patients who have narcolepsy or people who work swiing shifts, etc. It is a med that helps you stay awake in the daytime and not feel sleepy in the daytime. It also actually improves concentration. I dont take this one every day either, though it is also r/xed that way. I usually just take it when I really need it.

Definately talk to your Drs about this problem. There are things that can help! Though I HATE having to take the sleeping meds and the Provigil, they have really given me my life back, b/c before I got them, I was sleeping 20 hrs a day!!! (I am disabled and home all day, and I was just sleeping my whole life away!)

I hope your Dr will help you out with this and you finally get this sorted out.

Kind regards,
Amaranthe

[Claredale]

I am much like Amaranthe with the sleeping. I have to go back and forth between different sleeping meds. I had insomnia issues prior to my IC symptoms, so it was kind of a double whammy with the freq plus I already had a hard time sleeping. I was diagnosed with IC 20 years ago and when I would try going to bed, it was like my entire body relaxed, so I noticed the spasms and urg alot more. I was getting up every 10 to 15 minutes for at least the first hour or two. At first Benadryl worked at helping me go to sleep, then I was on Melotonin (supplement to help with sleep), but my body got used to that as well.

There are several meds that help me relax like Soma, Valium and my sleep meds. Some nights I go right to sleep, other nights seem to never end and I am watching the clock. I have tried sleep studies and so many things that I have read about. I tried either turning off my clock or turning it, but that makes me worse because I wonder what time it is and how much longer before I have to get up. I also play little games in my head which helps sometimes like naming cities that start with each letter of the alphabet. Kind of like counting sheep I guess.

Other nights when I have tried everything, I watch TV (HGTV does it for me) and it keeps my mind sort of at a lull since it's nothing to really think about and I nod off. Lately I barely make it through the first 5 minutes, but of course that is with my sleep meds.

I am very grateful that I don't require much sleep because for me 4 to 5 hours is a full night's sleep for me. I rarely get tired during the day.

I hope you find something to help you. We are all different when it comes to what makes us sleepy. I know many people of suggested that I read, but I am the type that will read the entire book, so that doesn't help me either.

Hugs, Tracey

[plmokn]

Thanks for all your suggestions, I have my next doctor's appointment in January so I will talk to her then. Until that time I'll try some your non medical suggestions. I really appreciate all of your support!

[theclownster]

Hi there! When I was first having IC symptoms and going through the diagnosis process, this was my biggest complaint. I would lay down in bed, get comfortable, and then have the constant urge to pee. I would have to get up multiple times before I could ever get to sleep. It was so aggravating, I felt like a walking Zombie! I hated it.

I noticed that you stop drinking liquids after dinner. I found that drinking lots and lots of water actually helps with all my symptoms. So I drink a lot and have a large bottled water next to my bed every night. When I wake up throughout the night and before I fall asleep, I always drink some water and it seems to help me overall, as strange as it might seem. I think it might be because it dilutes the urine and keeps me hydrated.

At the time I was getting diagnosed, I was also taking Zyrtec as needed for skin related allergies. So I decided to take it regularly to see if it would help my IC symptoms. It seemed to help me at bedtime and I was waking up much less. When I went to the new urologist (which is the same urologist I still see today), I told him how it seemed to help. He suggested I take Atarax instead of Zyrtec as it is known to help IC. He put me on a combination of meds that seem to really help me with all my symptoms. I take Atarax, Elavil and Ditropan XL. The combination of these meds really helps me. They help me so much that I mostly live a "normal" life. Well it's as normal as it can be with IC. I do have flare ups and occasional difficulties going to bed, but overall I'm doing much better. I still drink lots of water and keep a bottled water handy throughout the night.

I hope you are able to find something that will help you.

Take care,
Jennifer

[april ryan]

You described how used to be my life before the hydro... every night I had to go at least 8 times and this meant actually get asleep very late.

Since I got the hydro 3 months ago I can go just 5-6 times a day, and I can have a normal sleep at night. My only concern is that the frequency comes again... is that likely or not?

April

[dlm]

I have read many postings & it is nice to know that I am not so off base (or crazy :-) after all. I have had so called "infections" every month for 3-4 years now, but just recently diagnosed w/IC. My Gyn had me tested for all kinds of things, everything came up negative. Occasionally positive for yeast or bacteria, but similar symptoms regardless of pos or neg. He is a good Dr, but does not know how to handle my type of situation. I even made the comment to him that I can't be the only one with these types of issues. He had no answer for me. Very disheartening.

So, I finally went to a Uro, many tests later, IC is the conclusion. The kicker here is finding the right solution, which is very frustrating (has been all along). I have tried different meds w/usually nothing but more grief. I guess I just have a highly sensitive system. Zoloft made me more susceptible to conjunctivitis, Paxil more aggressive, have tried others, some meds caused throat to feel like it is closing, birth control pill provided nothing but monthly yeast or bacterial infections (stopped them years ago but still had issues), I had finally gotten monthly yeast infections under control by not drinking cows milk anymore. (wish I had known that 15 years ago!) The past 3-4 months had been wonderful in that regard. But still have monthly vaginitis symptoms. What sucks is that Elmiron seemed to bring on yeast or vaginitis (it is in the literature as a possible side effect). So I have stopped Elmiron, but have had two months of (feels like yeast?) infections again....Uuugggghhh. I liked Ambien CR but it actually seemed to cause bladder irritation, I tried a sample of CystoProtek at 2/day & that may be ok, although it seems to create constipation. I will try the IC diet & add more fiber to see if that helps. This whole journey has been very frustrating & depressing. I have tried so many things over the years, only 1-2 have actually made a little improvement. Does anyone have any other thoughts? I usually prefer natural remedies, given the history above, but am willing to try almost anything at this point. I know that I have said a lot here (sorry), but it is so nice to finally have others who actually understand what you are going through. THANK YOU!!

[KarenAnne]

Are you following the IC diet w/ prelief? All the great diet info on this site really helped me. I was up every 10 min. at night before I started the diet. Check & see if it's what you're eating for dinner. I hope you're feeling better soon.

[dlm]

Thanks for taking the time to respond Karen! I just started learning about this whole IC process, but I will look into the prelief as well. I have to print out the IC diet rules today so that I can try it. Thanks.

[statesboro]

I can relate. I usually do ok once I am actually sleeping, but I usually get up more than once prior to falling asleep. That sounds like what was in the original post. Yep! Oh! I have mentioned it to a couple of urologists by now.(and just told to stay on Elmiron)(even though it does not do wonders for me) I used to have much sleep deprivation due to IC, but I can get proper sleep on many occassions by now. (not every single time) I am just used to getting back up prior to snoozing to where it is not driving me crazy any longer. I definitely got proper sleep last night. (and awake around 9:30 am) Of course, most people on my shift went back to the 6:00pm-2:00am shift, but I still had some "use it or lose it" time to take. (and been told CFS before) Ok. I actually think it is amazing that I do ok once snoozing.(or usually do ok) Anyhow, I did read all the other post by now.