Struggle to Sleep

Oh come on now.....
No one should be up at 4:30 am on a Saturday, unless you're working!

Does anyone else have difficulty sleeping? Many nights I wake up every 2 hours or so. I usually manage to fall back to sleep only to wake again. When this cycle starts I usually am wide awake for good between 3:30 and 4:30 in the am. This is so annoying since I don't work in the summer and no that I need to stay rested!

I do have a Rx for Ambien and take that from time to time, but if I use it several days in a row I have a really hard time sleeping when I stop taking it. I am on O2 when sleeping at night, but still have problems.

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Don't have an answer, but I'm in the same boat as you.
I sleep for about 4 hours, then I toss and turn all the rest of the night.
And I work 10 to 12 hours a day. Need 3 lpm constant when I'm doing anything physical.
Haven't tried using o2 at night, maybe I'll try that.

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Hi,

I was experiencing sleep problems, waking 2 or 3 times a night and then staying awake from 4am on. I switched from Melatonin 3mg to Melatonin Sustained Release 3 mg and the problems have abated. I just cannot take Sleeping Pills---I have the misfortune of them waking me and making me hyper. But so far the melatonin has worked pretty well for me. And I don't feel worn out and tired the next day.

We do need our sleep since breathing takes so much of our energy--but I used to dread going to bed knowing that I would lie awake for much of the night.

Good luck---and I hope you find something that will give you a good night's slumber.

MaryJo

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1/2 an Ambien worked for me if I woke up at night. I never had trouble going to sleep at bedtime, just the waking up at night and not being able to go back to sleep. I was however also on prednisone. Since stopping that, my sleep patterns have for the most part been restored. My doc says no screen time before bed and none if you wake in the night, which makes sense to me. Too much brain stimulation at the wrong time.
I am wondering if Intermezzo RX might work for you. It's similar to Ambien, but is to be used for those who wake in the night. Discuss with your doc.

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My sleeping problems of the last decade corrected themselves once I started oxygen therapy. If not already on oxygen and using it during sleep (our breathing is depressed during sleep), might ask to having an overnight oxygen assessment done or a full-fledged sleep study.

I'm now sleeping like I did in my 20s and 30s.

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Hello, Ambien for me did no good. Be careful of Melatonin if you have low blood pressure. I am on trazadone, and it works wonders. I took all the sleep meds before until Trazadone I finally got some sleep. Hope this helps, Cary

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Dear DianeR,

I can tell you that every med out there to help you sleep will work differently. Over the counter sleep meds usually after a couple of nites, you wake up after a couple of hours and your jittery, like a junkie coming down. Ambien never helped me, either. Tried a lot of meds, finally tried Xanax, it didn't work either. I am so far into this IPF that the doc just gives me what we think of, anything that will help. You have to think of the stress you are under. Something to help with the stress may be what you need, so when you lay down at nite, you aren't thinking of all the things you have to do, or the bad things that may have happened that day. I don't know what meds you are on, but anyone on prednisone will have difficulty sleeping. Talk to your doc. As a general rule, I have noticed that most docs don't think lack of sleep is that important, especially if you have a chronic disease, make him understand that this is causing you stress and you need to sleep. Here's to a full eight hours of sleep.

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Thank you all for your input. I am very early on in the journey.... Just about 4 weeks in..... Still getting tests done to determine the type of PF and where to go from there.

I am on O2 during sleep and during exertion. I feel that my chest is a little less uncomfortable since I started with the O2. I also don't get as light headed or SOB while walking around or climbing stairs. But this whole thing is frustrating for sure!

I have been on Cymbalta for about 2 years now due to depression and fibromyalgia. (In the span of 6 years I got married to an amazing man, had 2 major surgeries, my dad passed away after battling lung cancer, my son-who lives with severe mental illness- tried to kill me and ended up hospitalized and then in and out of group homes, and then my husband was diagnosed with Non-Hodgkins Lymphoma. Although my husband has been in remission for 5 years now, THANK GOD, my son and I don't see each other as he moved to Georgia. All these things in a short period of time took a toll on me and the Cymbalta has helped me.). As far as meds for the PF are concerned, I haven't gotten there yet, other than the O2.

I will discuss my sleep issues with the doc next time I see him. I do have a sleep study scheduled for 8/1 and I will mention it to them as well. My pulmonary doc suggested I take an Ambien when I get there for the test so I can sleep. Fun, fun, fun!

Once again thank you and sweet dreams to all of you!

Diane

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Please don't throw things at me but may I suggest Meditation. It is not easy to do and does take a while to learn to do it successfully (then it's not so hard). My stress levels have dropped significantly and my sleep problems have vanished. I sleep anywhere from 8 to 11 hours a night with or without O2. I am sure I will need O2 24/7 eventually but for now mostly use it for exercise and these darn stairs in the house. I do sympathize with your lack of sleep and hope you find something that works for you.
Good luck and sweet dreams.
Liz

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Diane, I too used Cymbalta for depression and fibromyalgia. I found it worked really well for the fibro and was weight neutral.

Guess you and I have a dual reason now to experience "fibro brain" aka foggy brain.

If you've been managing your life fairly well with fibromyalgia, then those lessons learned will help you with the PF/ILD. The depression, the fibro, the PF/ILD are kind of like the same. You have to keep moving forward and keep the progress line more leveled out without the steep highs creating the extreme lows. We tend to overdo when we feel good and pay for it the following days.

Barbara

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Liz, I'm going to throw something at you.

Kudos for suggesting something non-medical. Meditation and relaxation techniques can be extremely helpful. I've used them in the past but must admit that I've never really incorporated them into my life. Good for you.

After 8-11 hours, are you feeling rested?

Barbara

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Yes, Barbara, I do feel rested - a little guilty maybe for being such a lazy bones but I do feel like I need that much sleep. Used to be satisfied with 6 or 7 hours but the IPF really takes it out of me. With my husband out of town, I am on dog walking duty so have been getting up a little earlier but then I need a nap in the afternoon. But the dog does get me out of the house while it is still cool enough to walk for an hour (big dog, needs lots of exercise) and the exercise for me is a good thing as well. If nothing else, it gets me moving and stems my tendency toward depression. My cat would be happy if I slept all day like him! lol

Liz

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That's good Liz. As long as your reaping the quality as well as the quantity.

Sleep well!

Barbara

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Hi, Are you taking prednisone? I started on that 4 years ago and was up and moving around from 3am onwards, Now,
I take an alternative steroid... Hydrocortisone... Does the same job but without the nasty side effects.

Having said that, I have sleep problems still albeit not so bad as before. I was awake last night till 3.30 reading.... and just ticking over. I slept for 4 hours till 7.30 and then no more. I have just woken up from my after lunch nap...of one hour so I'll do till bed time again. what a performance eh?

xxx Shirley

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So far, sleeping is the least of my problems. I get a good 8 to 10 per night, with only and occasional need to get up.

Not sure what my secret is!

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Hello, again.

I was given Cymbalta for fibromyalgia, which I took for six months, it was great, never felt better. My primary doc quit the practice and a new doc replaced him. After he left I had a routine blood test. When I went in for the results and routine exam, I had the new doc. She ask me how much I drank, I told her I don't drink. She ask me again, "I really need to know how much you drink", I said the last drink I had was two years ago, one margarita, before that I may have had a margarita on other birthdays, but that was all I ever drank". She told me my liver enzymes were so elevated that I had to be drinking everyday. I told her again, I don't drink except for a margarita maybe on my birthday. She said, "I can't treat you if you lie to me". I ask her if the Cymbalta, which is the only new drug I was on, could have caused this (I already knew that it could cause liver damage), she looked at my chart and said no, which caused my husband to go balistic. Needless to say, we changed doctors and I stopped taking cymbalta, yes, now I hurt, but I'm not going to die from liver disease, though after a CT of my liver, I do have significant liver damage. If you take cymbalta, always have a liver enzyme test added to your normal blood test.

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Hi Diane_R: Don't struggle to sleep, snuggle to sleep. (only kidding). I have always woken up in the mid of the night, at 1 or 2 or 3 or 4 or all the above. Prednisone now contributes also. I don't want to take any other RX's even OTC so being retired, I nap while reading or watching TV. I just don't feel guilty about it anymore. It is just me and my recliner.
I have to tell you that even with IPF I feel blessed when I see all the additional problems a lot of you folks have. With me it is only the IPF and a bad back that I will not go for surgery to fix. That limits my mobility but Im not going to be laid up for months recovering.
Regarding oxygen, the first thing my doctor orders back in Jan 2010 was oxygen at night. If you guys that are on oxygen aren't using it at night, strongly suggest you talk to your DR. to find out why you should.
Diane, if you are new to this site, go to the discussions and surf them for all the good info and great people who want to support you as we all journey together. Prayers are always welcome and you have mine. Turn your suffering into a prayer with faith and hope.

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I wake up several times throughout the night and often at 3:30 - 4:00 am. I work at home so I try to work a couple hours. Then I am exhausted. Sleep 2 or 3 hours for lunch, then work some more hours. After work, if I lay down, I will fall asleep almost immediately and sleep for a couple hours, then start the cycle again.

In looking through my emails to my doctor, half of them say I can't sleep and the other half say I am tired all the time. Though they seem to contradict each other, both are true. Once again, I thought I was the only one.

I have tried staying awake all day and not take naps then go to bed at 9 and still the same pattern. Between Hep C., fibromyalgia, menopause and ILD/pulmonary fibrosis. I just accepted that I would never feel rested again.

I used to have a prescription for Ambien, but my new doctor told me to stop taking it - so I take two Tylenol PM and 1 Neutron. I am anxious and have anxiety so meditation would most likely work well for me.

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I take a sublingular form of Ambien. The regular Ambien didn't help but this one I put under my tongue and it helps me fall asleep. The steroids that I have been on for months makes my brain feel like it is on a hamster wheel at night. I hate to rely on it but can't sleep without it.

I am hoping that once/if I can decrease the prednisone I will be able to sleep without the ambien.

Good Luck!
Janet

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Janet, my staying asleep challenge went away when I finally got off the prednisone. Hope that happens for you. Once in a while I find I have an issue, maybe 2-3/month, so overall I get enough sleep and don't worry.

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@diane, i take zolpidem (generic ambien) to help me sleep. i want to ween (sp?) myself off of it and use more meditation techniques. (@liz, great suggestion, @ barbara, great comback!) i even ordered deepak chopra and oprah's healing meditation cd's but of course they're sitll in the case. :-( i did download a couple of apps on my droid and when i use them, they actually work. i also have a padded eye mask to help me stay sleep when the sun comes up (i work 3p-11p). i hope you can work it out. christine

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