Sleep Issues - Is This Common with CF?

[justbecauseicannotseeit]

Does anyone else feel that the amount of sleep their body demands of them is just... way too much? I understand that getting plenty of sleep is especially important with CF, and I have been on antibiotics lately (the infection seems minor), but it just seems like way too much sleep for anyone to actually need. For example, if I don't get 10-12 hours I'm extremely groggy all day and will fall asleep any time I let my self sit down for a minute. This is very inconvenient for me right now because I'm a college student and super busy all the time!

But even now - I'm home with my mom for the summer, don't even have a job right now because my car died - I can't seem to fix my sleep schedule. The worse part about it is I seem to have developed an inability to fall asleep before around 4 am, so I'll sleep from like 4am - 2pm and often still be tired all day. I also go into really deep sleeps where people can't even wake me up, let alone an alarm clock. I try to stay active - I go bike riding as often as I can, take a dance class once a week, some times go to a yoga class or at least do some at home - but these activities completely wipe me out. I definitely end up paying for it in embarrassingly unexpected naps and extra hours out cold in bed.

I'm very nervous to go back to school or to start working again because I usually can't wake up even with multiple alarm clocks blaring. Last semester was really rough, I was late to a lot of my afternoon classes, I would fall asleep during class, etc. I don't know how I'm ever going to hold down a job, or live alone where there isn't someone there to make sure I wake up every day? I'm thinking about looking into options to fix the apparent circadian rhythm disruption thing going on, but will that also make me stop sleeping so much, or is that just part of having CF and chronic infection?

 

[Beccamom]

Have you had your night oxygen levels tested?

 

[Beccamom]

I found articles about children with clinically stable CF and how they have obstructive sleep apnea far more often then healthy same age peers, but I have not read research about adults with CF.

 

[justbecauseicannotseeit]

Thanks for the response! No I haven't had my night oxygen levels tested but I've wondered if I should ask about it. During the day I'm usually at 100%, and I rarely dip to 98%...only lower on one occasion. I do have a very deviated septum though, and I've wondered if it could be causing problems with oxygen levels at night...my ENT wanted to fix my septum when I was younger but decided against it once I was actually old enough for the surgery (shrug). He seems to think it's not severe enough to cause serious breathing difficulty but I can't stop thinking about it being a possible cause.

 

[azdesertrat]

It seems like plenty of people with CF have sleep problems; I'm one of them.
Most times it takes an hour or more for me to fall asleep even when I'm dead-tired. When I finally do fall asleep, any little noise wakes me. That is, until it's time to get up... Then it takes an act of God to get me going.
I've always been a night person. That worked out great as long as I could run night shift.
Thank God when I was trucking, I could run any shift I wanted, just as long as I got my loads hauled with no problems.
I've tried sleeping pills, Ambien to be precise. My Wife told me I 'did things' that she didn't like when taking Ambien. Things like having conversations with people that weren't there.
Now I don't let my insomnia bug me. I'm medically retired & now I can stay awake as long as I have to & sleep whenever I need to.
I guess the best thing you could try is to talk to your CF doctor about this problem, maybe he/she can help you or at least steer you in the direction of some help.
There's not many things as irritating in life as sleep problems. They can just wreck your life, I know.
Best of luck to you, I hope you find a solution to your problem soon. 'Pat'.

 

[jaimers]

I don't sleep well either and my oxygen levels have always tested normal. Like Pat, it takes me forever to fall asleep even when tired and then I always wake up at least once during the night but once is a good night--it's usually 4+ times. I've mentioned it to my doctor multiple times and never really got much of a response since my oxygen is fine. She did suggest that adrenal fatigue (the existence of this, or it being considered an actual medical issue seems to be debated with both yes and no camps being very firm in their stances) could be causing what I experience. she recommended turning off all screens (tv, computer, etc.) at least an hour before bed to see if that helps. granted i have not consistently done this to see if it helps but I'm planning to try it. otherwise i have no answers and no one else seems to either! haven't tried any type of sleeping pills, "natural" or otherwise

 

[justbecauseicannotseeit]

Thanks everyone! I'm sorry you guys all have sleep troubles too, but it is a bit comforting to know I'm not the only one - you both pretty much described exactly what I'm experiencing. I've tried turning off all tv/computer screens too, but for some reason i seem more likely to fall asleep if I put a movie on, haha. I've also been thinking about asking about "natural" sleeping pills, but I don't want to resort to that unless absolutely necessary. Every time I bring this issue up to a doctor they usually just tell me I'm probably worn down by an infection, but even when I'm on antibiotics and feeling pretty good the sleep troubles still persist, so I'm not entirely sure that's the case... I hope you find a solution too jaimers!

 

[Rosie55]

How are your iron levels? My daughter just found out hers are very low and I'm hoping that helps with her fatigue.

 

[Simba15]

I am tired and need sleep. I have sleep apnea and use a cpap. I always feel tired

 

[peter]

Is your heart rate normal or more rapid than you expect? Low iron sounds like a good thought (blood work). Also forms of depression can cause sleeplessness or insomnia. Not a general clinical depression but some issue a psychologist could help reveal. Many people under rate psychologist help. I'm sure over the years members on this forum have mentioned the benefit from such care. Probably can be paid for by insurance. Worth pondering. Just be skeptical of any advice requiring medicines. Sometimes dietitians have wisdom dealing with manifest functional life requirements (may require blood analysis). Some CF centers have good resources for what you describe. Blood work isn't "just" blood work. The medical practitioner has to request what specifically is being assessed from the blood sample.

 

[SunnyK]

My 11 year old step daughter w/cf has had trouble sleeping. Her Dr. ordered melatonin for her during one of her hospital stays and we continued it at home. She would lay awake all night sometimes. The melatonin along with going to bed and getting up at the same time works for her most of the time. If she gets off of that schedule we are back to sleepless night. The melatonin is over-the-counter and all natural. I have always wondered if her insomnia was cf related.

 

[justbecauseicannotseeit]

Sorry I've been a while, thanks everyone for your advice! I'm thinking about trying out melatonin if I'm still having a lot of trouble once school starts again. I'm waiting on blood work so I should find out soon if I might have low iron levels or if some other deficiency could be the culprit instead. Some other recent strange occurrences have made me rethink the situation though... A few days ago I had my first ever migraine and it was a crazy one (I experienced the "prodromal" and "aura" phase about a day before the migraine itself hit, the pain lasted for about 5 hours, and I felt very strange the next day...this had never happened to me before). Also the day after that I had my annual glucose tolerance test done and my numbers were high (my numbers are usually low, if anything). Just very strange occurrences and I'm wondering if it could possibly be related to the abnormal sleep patterns as well...

 

[vbs420]

The most obvious which hasn't been mentioned yet: CFrD.

Did your headache come on due to the consumption of carbohydrates?

Are you tired mostly after eating?

Are you always hungry?

I would encourage you to pursue the fact that you may have developed CFrD.

 

[vbs420]

And your annual glucose tolerance test, by this do you mean the type where one has blood drawn post-fast, consumes a large quantity of dextrose, waits two hours, then has blood drawn again?

What were your pre and post glucose numbers?

If your fasting glucose (first test) is anything above 7, this is a cause for concern. If you achieved double digits, you're likely diabetic.

 

[RockyLass]

I have a weird sleep cycle to. I need 10 hours or sleep to feel my BEST. I can get by on 9 if I'm feeling good, The average 8 hours is NOT enough and I get tried quickly. When I have an active infection it seems all I do is sleep. Go to bed at 10PM and wake up at 10AM! Then nap again in the day time for another 2-3 hours.

I'm not an early raiser, but trying to get better, my usual time for waking is 9 or 10 am, I can go the full day without a nap on that time. If I wake say 7AM or 8AM, I will need a hour nap at around 3-4 PM. Those are when even when I got to bed at 10 or 11 pm.

10 hours of sleep a day is alot to fit in so I just do the best I can and everyone just leaves me and understands. I do like to rise early and really like the mornings and don't like being lazy or sleeping in. Breakfast is my favorite time of day. So I rise early when my body says I can.

Try to keep a bedtime routine and keep things quiet. Sleep is important for CF and sounds like your schedule off track and you might even be sleeping too much. My problem is finding the time to wind down from the day form all the hustle and bustle. If I take albuterol to close to bed, Im up til 2 in the morning, so now I split the dose and im fine. I find too if I go the gym too late in the day im WIDE AWAKE at night from the adrenaline!

 

[justbecauseicannotseeit]

vbs420: I have no idea what caused the migraine, but I had slept in pretty late and hadn't really had anything to eat but eggs and coffee that day. I started feeling super dehydrated though and downed a couple bottles of water which was weird. And yeah, I always have the munchies yet I've lost quite a bit of weight lately...thought it was probably a sign of infection but I guess I should consider the possibility of CFrD. THe glucose test was the type you described - I don't remember my pre-glucose numbers (they didn't seem concerned about it though) but the post-glucose test was 184. They said it was high but not to worry and they would look over the rest of my lab results before taking any action.

RockyLass: Sounds a lot like me! The same thing happens to me with exercising - I only have the energy to do it later in the day, but I'm afraid that the adrenaline is what's keeping me up at night. What you said about the albuterol caught my attention... I don't do albuterol at night because it makes my heart rate go up too much to rest, but I usually use a symbicort inhaler (I use it twice a day). It doesn't give me the same shakes albuterol does but I'm wondering if it could still be making my heart rate go up enough to make it difficult to rest...a good question for the doc.

Thanks guys!

 

[RockyLass]

Hi justbecauseyoudontseeit,

YES, albuterol is VERY big cause for insomnia, for awhile I didn't know why, I would just lie there with my eyeballs wide open(VEST) after a treatment, Til I figured out eventually, after no DR tells me, it was the albuterol. For my night routine I split my dose of albuterol ampule and dilute with sodium chloride. So 50 + 50 works for me. I do this to if I don't want to be a nervous wreck anywhere i'm going, like out driving, or important events so im not having the feeling of wanting to run away like a horse. It lasts shorter though, so then I feel the need to do another in two hours again, of course. If inhaler, just do 1/2 of what I usually do.

It is possible the smybicort is giving you insomnia, its also says faster heart rate. Maybe you can do your dose earlier in the daytime to reduce side effects?

 

[JakeS]

sleep problrms

Hi, i am 38 w/CF. I too experiance sleep problems. The key for me is taking care of the restlesness and pain that keep me from sleeping in the first place. When i was young i would fall asleep in school, but it improved with age. I think 12 hours is too much anyway you look at it. Ten, just fine. My advise is to try some behavior modification therapies. That is wgat most docs try, then meds. I would not advise a daytime stimulant as you will just crash and burn. Instead try 1 cup of coffee/ tea to get you out the door. If allowable schedule a break from school/work either mid morning, or after lunch. Find a nice quiet place where you can rest for 15/30 min. Set an alarm, wear an eye pillow, and just relax. Even if it means lying on floor of quiet darkened office, try it. At school disability services should be accomadating. When you can get to bed early. I advise trying sleep meds to help your body"turn off" quicker. Start with melatonin/passion flower/valerian, if that does not help try an old trycylic antidepressant like remeron. Do not take lunesta/ambien etc. as these are prone to behavior/bad dream/blackout problems. Good luck, rest well

 

[kyeev]

As a confirmed night owl, here are a few tips I've picked up to fit in with the early birders.
I too, am one of those people who can easily stay up to 2am regularly and can do a 4am-er on occasion. I've even stayed up til 6am once or twice but that's just ridiculous.
Apparently 2/3 of people are early birders, hence society is geared towards early risers and us night owlers have to lump it!

Anyway, the old wisdoms do actually work.
1. Get up at the same time every morning. For me that's 8.15am.
2. Even if you go to bed really late, still get up at your chosen set time.
3. Do not take a nap during the day. Instead stick it out til night time and go to bed early. I use coffee to get through the "must have a nap" feeling.
4. Leave the curtains open so that sun light hits your room in the morning.
5. Dim the lights, avoid tablets/laptops an hour before bed time. Bright light is bad for sleep.

CF specific tips.
1. When you have an infection, you will need more sleep. My 8 hours will go to 10 or even 11 hours. Go to bed earlier, so you can still maintain your 8.15am start.
2. Similarly, when your lung function is below 35%, it can interrupt your sleep, so try tilting bed (head higher than feet) or try oxygen at night. These tips have worked well for me, so maybe they'll work for you.

You will need to stick this regime for about 2 weeks to feel the effects i.e. feeling good and awake at your chosen time e.g. 8.15am .
It will be hard work! I REPEAT, IT WILL BE HARD WORK!!
You will feel like rubbish for the first 2 weeks til your body clock fully adjusts.