Sleep, that is all I really, really want!

[lauriecircle]

I do not even remember sleeping more than 2 hours at a time. Seriously can't remember it! :shake:

When I seriously think about my IC/PFD, I realize I don't care that I know where every single bathroom is in the Twin Cities... I don't care if I go every hour during the day... I don't care that I can feel my bladder every minute of every day... I don't...

I JUST WANT TO SLEEP! I am exhausted!!! Truly exhausted. I am up every two hours all night long on a good night. And every hour on a bad night. Falling to sleep, I get up 2-3 times before I feel comfy enough to sleep...

So my question... WHAT HAS HELPED YOU THE MOST to sleep through the night? Just that, if you can/do sleep through the night what got your there?

I have tried Benadryl, Kava Kava, Valium, Melatonin... All help me get TO sleep but NONE keep me asleep all night...

PLEASE HELP ME SLEEP!!! Thanks in advance!!!

[mom_in_ma]

Laurie,
Valium and xanax are short acting...four, five hours at best. My psychiatrist just stitched me to klonopin for nighttime becaue it's a much longer acting form of those drugs and keeps your muscles relaxed during the night. I was using xanax but found that I was clentching my entire body when I woke...that certainly didn't help matters! Also, others have had success with some of the perscription sleep aids. Wish you luck. I'm originally from the twin cities!

[rjyoon]

Don't know if this is helpful, but I've spent 30 years looking for good sleep. I take DDAVP, Detrol, Xanax, & Benadryl right before bed to help my sleep. I just started taking Lyrica, and it's making a huge difference.

[Dreamlove15]

I was reading over your post and noticed that you take Benadryl. I do know that I CANNOT take this because it does the opposite, it keeps me up. It tends to make my heart race, im jittery and some people just react funny to it. Have you tried taking phenegren? This is another antihistamine that some take for nausea, but it makes you really sleepy. But im not sure if they give it to you to just for sleep, but hey its worth asking a doctor. There are also home remedies such as warm milk(if you can drink it?), reading a book just before lying down, listening to some soft music....also I was watching an Oprah show and she said to try to minimize your distractions, such as a loud dog that snores LOL, ticking clocks, a husband that snores or hogs the covers haha.... other tips the guy said was to keep your room for sleep only....um making sure your room is dark, having a comfortable temperature. Anyways I hope that you find some good sleep soon. Good luck.:angel:

[BBB]

Oh, not sleeping is crazy making. :mad:

I don't know if you take narcotic pain meds or not but those can inter with sleep. I do so my Doctor have me Methadone to take at night because it causes sleepiness.

Hope you find relief,
Betsy

[lauriecircle]

Hi all, Thank you!

Betsy and Dreamlove, it is not getting TO sleep that is hard, it is STAYING ASLEEP, DUE TO MY BLADDER! I wake up to pee every 2 hours and I have tried ignoring it, but then I just lay there awake and uncomfy or in pain! Best to just get up...

Rjyoon, I am interested in your story. My Dr. is suggesting interstim. I see you have one, did that not help you to sleep? Is the Lyrica working better than everything else you have tried? How many hours in a row are you getting with it?

Thanks everyone! Laurie

[Michelle25]

I had the same problem.. I started Elmiron and it made me so tired that I was taking naps twice a day where I could never take one before, and I was finally sleeping all night too. I quit taking it last week though because of my hand and i'm still sleeping all night.

Other than that, nothing helped before I started Elmiron.

[GriffsMommy]

I take 75 mg of hydroxzine at night and not only does it make me tired but it keeps me so sleepy all night long that I am able to go back to sleep again right after I go to the bathroom. I used to get up 3-4 times a night and I was still going right back to sleep afterwards. This is the only med that continues to make me sleepy and get back to sleep easily at night. Everything stopped making me sleepy after about a week.

[muxerr012]

Lauriecircle,

I can so relate to your screaming need for more than 2 hours of sleep a stretch!! I have chronic insomnia; have had it for years. I was dx'd with IC and fibromyalgia within the past few months and the most dramatic change in my sleeping was from the Lyrica. I still have rough nights, but I have 4-5 nights a week where I can stay asleep for 5-6 hours!!!! This is a miracle for me after 4 yrs of suffering with sleep deprivation. I take Lyrica 3 times a day for the neuropthic pain which helps with me with the IC and the Fribro. I take 1 ativan or xanax at night 30 minutes before bed.

This has made a HUGE change in the quality of my life, my sleep, and my sanity. I hope this helps you, I truly do. I understand your pain so well and I wish for you to begin sleeping well SOON! You have to try something, right? This was the answer for me. Hang in there and please keep us posted on your progress ok?

[Claredale]

I have had sleep issues for years, even after my interstim made my freq/urg so much easier to deal with. I had major anxiety knowing that even if I went to sleep, I was going to wake up in pain. I long past got immune to the usual remedies of Benadryl which can also cause short term memory loss after long term use. I used Melatonin for a while, just kept increasing the dosage. Took Elavil, Amitriptyline, several sleep meds including the old fashioned ones like Seconal, which was scary, especially when my pharmacist filled it wrong and gave me Seroquel! My doctor finally put me on Rozerem last summer. It's non-addictive and I don't feel drowsy the next day. I am sleeping around 6 hours at a time. When I started that, I started having another issue with burning bladder symptoms, which then I was put on the nerve meds, like Neurontin, Lyrica, and Topomax, but I couldn't handle the side effects. I kept telling my doctor I was finally sleeping with Rozerom and I felt good taking it. I read about Proced DS on a thread and asked him about it. So now I am on the combo of Rozerem on Proced and sometimes Valium depending on my anxiety level when it's time for bed. I have been sleeping well since September. I still wake up around 5 or 6 in pain, but I have a Lortab and a Prosed DS right next to my bed which I take as soon as the pain wakes me up. My husband said that I start talking and sometimes crying in my sleep when the pain is starting up, so he tries to wake me up before it gets too strong. The other night I dreamed I was in labor, the pain was so intense, but with my combo, I normally fall back to sleep within 30 minutes at the longest when I used to be up for the night after just a couple hours. I have had more nights than I can count of watching Nick at Night, and HGTV for hours trying to fall back to sleep. All meds don't work for all of us, but the combo I am on has definitely changed my life. I pray every night that it will continue since my body has been known to "conquer" the effects of meds on several occassions!

I hope you find what works for you. Everyone of the meds that people have named have worked for several of the people I know dealing with IC.

Hugs, Tracey

[Salsa]

Loss of sleep is the worst!!!!!! I just recently started sleeping for 5-6 hours at a time. I take 100 mg Trazodone. It works really well. I have been on so many different meds and this one really does the trick. Ask your doc about it...it's an antidepressant but at that low dose is used for insomnia. Best of luck to you! (I use to get up 20 or so times a night)

[sickofmybladder]

I take hydroxine (Visteral) as well - I am currently at 25 mg - which worked great for 4 months - of course now I'm thinking It might be time to ask my doc about upping the dose a bit - it definately helps with the frequency and waking up at night (at least for me).

[jjt001]

Before I started Elavil I was often up every hour going to the bathroom. Luckily I can usually fall back to sleep easily, but all of that interrupted sleep was exhausting me. I take Elavil and it has made a huge difference. When I was on 75 mg, then 50 mg I often would not get up until about 6:00 a.m., and I think that was mostly because my husband would be up and I'd wake up then, of course, have to go to the bathroom! I've lowered my dosage now to 25 mg and I notice that I'm getting up 1 or 2 times at night, but I'm hopeful that will adjust as time goes by (also, I have not been following the diet as well as I did in the past, which is no doubt affecting me as well).

Like others, Benadryl does exactly the opposite for me, I can't sleep. Same when I tried Tramadol for pain, I was up all night (and retaining, the worst night ever!).

If you haven't tried Elavil and your doctor thinks you're a candidate I'd highly recommend it. It has given me my life back!

[TexasHoney]

Lack of sleep is one my main problems with this awful disease. Elavil and Benadryl help me sometimes. There are nights when nothing helps. IC really sucks doesn't it.

[born2swim]

What helps me sleep... at first Atarax, but then my body got used to it and it did nothing. Sanctura helps a bit. NOT STRAINING to pee is major. If I strain anywhere near bedtime, my bladder and surrounding muscles are in an uproar. I don't drink 1 hour before bed. I was just put on Soma (a muscle relaxant) and last night was the first time in over a year that I have slept through the night. Today, I even walked 30 minutes on the treadmill. I dont' want to jinx myself but Soma seems to be helping. I just hope it isnt' tempoary. It does make me a bit dizzy for the first hour I take it (but Valium just made me flat out groggy and didn't help). So... I know your pain and it took a long time for me to find something to help me sleep better. I hope you find something that works!

[Claredale]

When I started Soma, I felt weird too. I remember sitting on my chair in the den the first night. I have a Santa collection which I used to keep up all year. I kept telling my husband that they were floating around. Within a few days, those side effects were long gone. I still take Soma from time to time if I have pushed my body too much work wise. I hope it continues to work. Sleep is something you never get back and our bodies definitely need it to be as healthy as possible.

Sweet Dreams!
T83

[born2swim]

Well... no floating Santas around here... just a little dizzy when I stand up!

[bahhumbug941]

I take Azo-Maximum. I take just ONE pill on really bad nights. It is a bladder anesthetic, so you can't feel that you have to go. DO NOT take them for more than three days in a row, and try and take only one at bedtime.

[HistoryKat]

Ahhhh..... To sleep: perchance to dream: ay, there's the rub..... I really miss sleeping. I've always been a night owl but I could go to sleep when it was my time to... now I'm up going to the bathroom ... shifting around trying to find a position that doesn't make me cry from pain ... and boy do I miss sleeping on my stomach :cussing:

I take Azo-Maximum. I take just ONE pill on really bad nights. It is a bladder anesthetic, so you can't feel that you have to go. DO NOT take them for more than three days in a row, and try and take only one at bedtime.

Hello! A bladder anesthetic?!?! What a wonderful idea .... this is over the counter stuff right? Nothing to do with sulfer is it? Sulfer drugs turn me into one large rash.

[bahhumbug941]

Yes, Azo is over the counter. I don't know about the sulfer element--and since I just had Interstim test implant surgery today, I can't get up to go look on the box. Sorry! lol. It's been my saving grace for well over a year, since I discovered it. It's almost identical to Pyridium, which is what any uro prescribes for UTI's. That's how I found out about it. They save not to take more than 2 (or maybe 4) pills in 24 hours for longer than 3 days, because it can harm the liver, but my liver is doing just fine. Of course, ask your doctor about all of this, I'm by no means a medical professional, I just think that for some OTC meds, the hype over how dangerous they are is stretched a little too far. They don't give you the statistics, just the warnings--if just one person out of the thousands who use Azo on a regular basis got liver failure and sued the company, then the company is obviously going to put that warning on there. Not saying that anyone should ever ignore warnings on medications, but don't take them all as if they're going to happen to you. Sorry if I rambled a bit, I'm on pain medication right now and not accustomed to this haze. Try it out, you can get it at any Walgreen's or CVS--just, like everything else, always take a break from it, and never overuse it (save it for the four out of seven worst nights of the week, say, and start out with one pill instead of two). There's my two cents. :)

[Tracie]

I am very similar. I have no problem falling asleep either. Its staying asleep that is hard. I strongly believe in Lavendar. I have lotions, sprays, and oils. I usually take the lid off of the oil and breath it in deep. I also do my yoga breathing. I breath in to a count of 6 and breath out to a count of 8. My mother takes Klonopin for sleep issues. and she really likes them.

[sickofmybladder]

Tracey -

The Lavender is a great idea - before I had some medicine intervention - I would listen to very soft classical music - it did help as well.

[Claredale]

I spray my pillow with lavender mist every night. I also play a game in my head kind of like Scattagories. Like name cities, TV shows, girl and boy names, etc...that start with a, b, c, and so on. I started that when listening to music started getting on my nerves. I really like everything to be quiet when I sleep. I also do states with their capitals, state birds, anything I can think of. It just kind of makes my mind drift off. Lately I don't get very far into my game.

T83

[lauriecircle]

Thank you all! I am making a list of all the drugs you listed to talk to my Dr. about. Cause after reading everyone's experiences with interstim, I don't think I want to do that. I just want to sleep THROUGH the night. All those wonderful meditation, lavendar, etc ideas work great to get TO sleep, but my issue is that my bladder wakes me up every two hours no matter what I do... So I need something to relax and control my bladder through the night. I hope one of these options works for me! Thank you for all the great ideas!

[lauriecircle]

I am so tired I am really starting to get loopy. I see Dr. on Tuesday and can't wait to get started on SOMETHING to help! I will let you know what she suggests!