Not sleep

[Kirs10]

I have been taking elivil and atarax since 2003. I have always been able to sleep really well, but in the last week or two I am not sleeping at all. I am taking all the meds along with my pain meds every 4 hours and I am still not sleeping. Any suggestions? Iam not sure if I should have my doctor prescribe something stronger or up my dose of one of the two I am taking.
Any help is appreciated..........
Thanks Kirsten

[Katrina]

I believe a lot of IC patients are on sleep meds. I think many like Ambian ER since it not only helps you fall asleep but helps keep there and some days that is definatly what I need.

yes there are a lot of things that treat symptoms that can help you sleep.....problem is if you need that med during the day time too it may not work at getting you to sleep for very long.
As it is I gain dependence to things and just can't fall asleep sometimes.

simply sleep is something I turn to occassionally, Melatonin, chamomile, catnip. Messaging the ears can help.

[Claredale]

I have been down the long road of sleep meds. My body gets used to them and then they quit working. I started taking Rozerem last summer. As long as I go to bed right after I take it, I sleep very well. Even when I have to wake up a couple times to go to the bathroom, I can fall right back to sleep. It's non-additive and I never feel groggy the next morning. With all of the other type meds, when I woke up to pee, I had a very hard time falling back to sleep.

Also be careful with Ambien, especially the controlled release. There have been alot of instances where people wake up and do things they don't remember. I decided to clean my carpet one time during the night and cleaned it with bleach. I ruined 4 rooms of carpet. My aunt was ordering things on line. I have heard other people do that as well, and don't remember it when the packages arrive. I don't remember having any sleep walking issues on regular Ambien, just the CR and my family can give you plenty of stories. At least I never tried to drive, which my aunt did. She drove to Walmart, bought some wallpaper border and hung it up in her laundry room and the next morning didn't remember a thing. Of course this doesn't happen to everyone, but my doctor that I was going to at the time said they had a few patients that didn't want it anymore because of amnesia moments.

T83

[jjt001]

I remembered a very good post about sleep problems and looked for it. Here it is -- perhaps it has something in it that will help!

http://www.ic-network.com/forum/showthread.php?t=30698&highlight=sleep+hygiene

[lisabar36]

Hi, I have this problem also. I always was able to sleep and all of a sudden I had problems, no matter what time I go to bed, I am up early, so I try to go to sleep early but I have a hard time falling asleep. In turn I am tired. I would talk with your doctor. My doctor suggested to me that I increase my elavil. He said to start increasing it by 10mg at night. He said I could go as high as 50 mg at bed. I am going to start increasing it by 10mg and see if that helps. So maybe your doctor will have a good suggestion for you. :)

[sami4]

I had a sleep study due to constant waking during the night which I thought was due to nocturia. Turned out I had sleep apnea. Got the CPAC machine, still woke up, but didnt necessarily have to pee. Went to the sleep doc, who gave me silly advice that anyone who dont sleep has surely tried:
sleep at same time, dont drink caffeine--blah, blah.
Finally got regular Ambien which works great for 4-5 hours but needs to be rotated after about every four days or seems to lose its effectivness.
Tried Rozerum which is a melatonin based drug, Ambien regular worked better for me with no hangover. Rozerum also interfears with your hormones which I sure didnt want.
Good news is that I found out it wasnt nocturia. Kept a sleep diary and discovered if I go to bed around midnight I will sleep at least a solid 5 hours.
I think the hypothalmus in the brain gets wonky due to chronic stress and chronic pain, and then its a mess trying to reset it.

[ltlmiss]

Im a strange one, Atarax does not make me sleepy, Elavil did nothing to make me sleep, and pain meds make me wired. I cant ever get any sleep, I have very disruptive sleep but I dont really want any sleep medicine because Ambien made me have nightmares and I would also do crazy things in my sleep while taking it. Yawn...

[Claredale]

ltmiss, you are not strange! They don't make me sleep either. I just increased my Elavil and I went to sleep the first night and woke up groggy, so I took it earlier the next night and couldnt fall asleep, so I took my Rezorem so I could finally go to sleep. So now it's been a week since my increase and my doctor said to increase it again, so I did last night. I got some sleep again, but I had literally been awake since 11:30 pm the night before. I had taken my Rezorem as well and had fallen asleep, but my husband came home from a basketball game, and he accidentally woke me up taking the dogs out to the bathroom. I got up just for a few minutes to talk to him, then we went to bed and I never fell back to sleep, so I had gone 24 hours without sleep. Thank God I don't require much. I am happy with 4 to 5 hours but for the most part I get about 6 hours of sleep now which only happened once I started on Rezorem. I took all the latest sleep meds, Ambien, Ambien CR, Lunesta, even old fashion sleeping pills through the years. This was after the usual Benedryl, and PM meds and Melatonin. I could take several and not get more than a couple of hours. Shortly after my interstim when my urg/freq was so much better, I went for a sleep study because it was if I was scared to go to sleep. The closer it got to time for me to go to bed I got more anxious. Per their opinion, it was truly a head thing because if I had any feeling that I needed to go to the bathroom, I would get up and try. That would go on for hours. I was put on valium, Atarax and Elavil, plus my sleep meds and still by midnight I was wide awake. I watched more TV, read books, listened to medatation cds, simple mind games seem to be the most effective. Like TV shows that start with A, B, C and so on. I would drift on to sleep that way more than anything else. I tried every remedy I could find. I would go back through the meds again since my body wasn't used to them, but again, my body would conquer each one and I would have to go to another. Finally last summer my doctor put me on Rezorem. Like I said in my post earlier, as long as I take it and then go to bed. Midnight is normally my bedtime. I have always been a nightowl. My husband is as well. I took the Rezorem and would get in bed, turn my TV on HGTV and I would fall asleep within a few minutes. I looked up Rezorem today regarding the Melatonin, but I couldn't find anything about it having Melatonin in it, but I will ask my pharmicist when I get my next prescription on Monday. Because Melatonin doesn't do a thing for me, so either it has other ingredients in it or it is all in my mind, but whatever it is, I go to sleep and I still get up to go to the bathroom not really waking up much and then fall right back to sleep and wake up about 6:30, take a pain med because I am normally hurting, lie there for a few minutes to watch the news and then I am fine for the day. Now if I take it and for any reason don't go right to bed, I am in for it. I can expect a sleepless night.

We are definitely all different, but I am just saying what worked for me and to let ltilmiss know that she isn't alone as far as what doesn't make her sleep. I have been dealing with the sleep issue for about as long as I have had IC which is 20 years now. I pray every night that the combo of meds I am on right now will continue to work because I feel better than I have in years. The need for my pain meds are just 1 before bed, because my pain is noticable at night when I am relaxed and then 1 to a half of a Lortab in the morning. Just last summer I was still taking pain meds ever 6 hours or so. I really believe that getting your rest and being on the right meds makes a huge difference. If anyone would have asked me 20 years ago if I would still be dealing with this, I would have thought they were crazy. I feel better than I have in years. I would love to get to the point of not needing any meds, but at least I have dropped the dosage as well as the number of meds that I take now.

Sorry so long. I am just passionate about people getting their sleep since I have been there and know the frustration. I am so glad that my doctor supports me and is happy that I am actually "normal" during the day with my freq/urg and no pain meds at all.

T83

[ltlmiss]

Im glad im not alone Tracey although I am sad that you have to go through the same thing as me.:loco:. I have heard of the sleep med Rezorem, that its not addictave, so thats good. I might try to see if I can get a prescription. Nothing knocks me out, my husband doesn't get why I sleep till noon, a lot of times I dont go to sleep untill 4:30 in the morning. I am so tired of playing possum in bed all night!:shake:

[Berkshire Road]

You know, it might not have anything to do with IC. Maybe you're not breathing well at night; you could try those strips that you put on your nose. Some people say to sleep in a cooler room. If you can, try to make sure you get some exercise every day so your body is tired.

I've been through sleep deprivation and it's horrible. I hope you get it resolved soon.

[Claredale]

Rezorem has the commercial with the groundhog and Abe Lincoln. Look it up on the internet and you can read all about it. I did alot of research on it before I took it just because it was new on the market. I had issues with Ambien and Ambien CR that some were funny and others scary, so I was very careful and talked to my doctor and my pharmacist about it.

Carolyn's suggestions are good. I certainly tried everything I read regarding insomnia and ways to fall asleep easier. That is why I finally went for a sleep study. Since my body had been through so much through the years, my mind still has the thought that I will need to pee and the possibility of waking up in pain, which still happens if I have pushed myself too hard, so even though my pain meds were working, and I was tired, I would continue to get up every few minutes to empty my bladder. I am finally to the point that I use very little pain meds, but I do take Amitriptylin every once in a while until my body gets used to it as well as diazepan which is to help with my anxiety, so sometimes I do fall asleep without taking Rezorem, but normally on those nights, I fall asleep at my usual time but wake up after just a few hours and I am wide awake for the day.

And finally getting sleep has made me less irritable and I am able to enjoy my life again. It is my goal to quit taking any sleep meds and I am slowing getting there. That is another good thing about Rozerem is that you can skip nights and not have any problems. I normally try not to take any over the weekends since I can sleep later if I need to. I end up requiring naps during the afternoon, especially on Sundays after church. But since I work full-time and need my sleep, I am thankful that I finally have something that allows me to get more rest, not just medicine sleep, but actual sleep and as long as I am able to do my morning routine of waking up and watching TV for about 30minutes or so, I am ready for the day.

[sami4]

Here is what I learned at the sleep clinic; it may help some one:
Do not watch TV or use your computer an hour before sleep because it emits a type of blue light that stimulates the brain centers that regulate sleep and melatonin. Expose yourself to at least 10 minutes of sunlight without sunglasses daily (drive to the store, or walk around an outside mall. Here in Arizona I do 10 min. in early morning on the patio.
Melatonin starts to rise around 10:00 PM but decreases with age and hormonal imbalance. Melatonin supplements act the opposite in some persons and make them agitated and restless with bad dreams.
Ambien is a GABA brain agonist and helps the brain retain GABA which a chemical that turns brain off and calms it down.
Rozerem is a melatonin agonist which preserves the melatonin you are secreting but also raises Prolactin levels in the body which interfear with other sex hormones. I dont take this because of that and because Melatonin makes me agitated not rested.
Elavil, Atarax, Benedryl are not recommended to be taken at bedtime for most people who have sleep problems as they interfear with sleep center activity. If you take them try to finish up no later than supper.
Atarax will really put me to sleep for a few hours but Benedryl will not.
If you wake up--you will pee, the Doc said this is true with everyone. In my case it was sleep apnea not pee problems which most of us blame.
I have had two sleep studies now and can get about 4-5 hours at a time, wake up and then sleep again. I also use a CPAC. I learned a lot about sleep and the brain chemistry involved; sleep problems are either due to seratonin or Gaba calming brain chemicals that turn off the system. These can be wonked out by a lot of things such as chronic pain, stress, gloomy climate....... Problem is to find something that balances this and when you take a lot of other medications a lot of them make sleep problems worse.
Sammi

[Quinn24]

Has anyone tried Imovane/Zopiclone.....(think Imovane is the Generic name). This is a great sleeping prescription med, non addictive. The 7.5mg prescription is the one to get. The diamond shaped little blue pill has saved my life!!:woohoo:

[Katrina]

Great post Sammi Thanks!

[GriffsMommy]

It's so strange that this was brought up as I have just started having sleeping problems. My night time meds do make me tired but for some reason I am fighting to stay awake at night and stay up until about midnight even though I could probably fall asleep alot sooner. I have no idea why I'm staying up so late other than the fact that I'm trying to get some alone time. My bigger problem is though that I wake up to pee or my son wakes me up and then I can't seem to unwind again to fall back asleep for at least another hour. I don't know if I'm at the point where I want to ask for sleeping meds though. I guess I'll just have to play it by ear.

[Babs RN]

I love the Ambien CR 12.5--it is great for me!!!!!!!!!!!!!!!!!!!!!


Hugs,
Barb:hi:

[Claredale]

Sammi, I appreciate your advice. I am sure it will help lots of people. I hope it does. I look for advice on sleeping constantly. But for me, the only way I can go to sleep is with the TV on. I record "If Walls Could Talk" and that is the show I fall asleep with pretty much every night, unless hubby is watch ESPN, then I am asleep even faster! I take my meds, go to bed with my warm heated mattress cover and my dogs have their nightly kongs and I watch that show and I am out like a light before it even ends.

There was even a story on The Today show last week that I recorded about a way for people with sleeping problems to fall asleep, I am in the process of trying it to see if it works. I want to be off Rezorem over the weekend, and then try that theory out. But I have a horrible case of insomnia. I used to never be able to sleep with any noise prior to dealing with IC. Many nights I slept with airplugs so that I wouldn't hear the crickets, or the train a few miles away, or the neighbors dog. I have tried everything that you have mentioned many times over. I have dealt with insomnia most of my adult life. I never was a sleeper even as a kid. Even when I was a teenager and we were supposed to get more sleep. I very seldom even spent the night with friends because I was the early bird, even when I went to sleep late. I would be up at the crack of dawn and just read or find something quiet to do. At this point in my life Rozerem works for me. I read about the decrease in sex drive which concerned me, but I don't have that side effect...actually mine has improved because I am getting sleep! Sorry if it's TMI! At least thats one side effect that I don't endure. I am happier now than I have been in a very long time. Now Rozerem may very well stop working any day now. Who knows??? I have been there many times, but the last 6 months or so that I have been on Rozerem, I enjoy going shopping and being around my friends again. I have most of my weekends back, where I used to spend them trying to catch up on my rest. This is a big deal here...I wake up when my dogs ask to go out...my 2 year old dog is still very used to my wake up and stay up routine. Now that we have a blind dog in the mix, my husband and I take turns, so I hear him taking them out. I don't always feel the need to pee when I wake up because I hear him taking them out, but I normally seize the moment just in case I have too a little later. When it's my night, I lie on the couch until they come back to the door and I am able to fall right back to sleep. Before Rozerem, I would have never been able to go back to sleep after I was woken up like that.

I keep a journal, I have for years and keep track with my daily routines dealing with my symptoms of IC and always end it with something good that happened that day. I can see a big difference in every sympton I have with IC since I am finally getting my rest. No pain meds except at night. I urg/freq is just as good as a normal person during the day. I can go several hours, when even post inter-stim, I was still going every 2 hours or so. I used to get very freaked out when it was time for me to go to sleep. No meds wouldn't work for long to take away that anxiety. It was there and I was a mess. For now, those type nights are gone. I pray every night that what I am doing will continue to work. My doctor is very excited for me. He said he has never seen me so bright eyed before. I am happier and look forward to tomorrow and even things that are months away, which I used to hate to commit myself to anything because I never knew how I would feel when it came time to fulfill my promise.

I am just saying what works for me. We are all very different in what meds, treatments and remedies work. If I have problems again, which it probably will, since that has been my pattern for years. I may be on here looking for help again. And my doctor and I will start another med and hope that it works. I have already written Imovane/Zopiclone down in my journal for another option if necessary. Quinn thanks for the info and I am so glad you have found help. It is a good feeling isn't it!

Hugs and sweet dreams!
Tracey

[curlycue]

Help I need something or I am going off the deep end. I have not been able to sleep for 3 months now. I dont know what to do. Tried Ambien worked great, not anymore.