Sleeping trouble

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anonymous

New member
I've had a lot of trouble getting good quality sleep for a number of years now. At first I just thought I was working too much (60-80 hours a week), but I recently switched to a 9-5 job and my troubles are still there.

I never sleep through the night, and I'm always tired during the day. I find that if I have a few drinks (but not so much that I would be hungover), I do sleep though the night and feel refreshed in the morning. I thought I might try some over-the-counter sleeping pills as a safer alternative for my liver!

I recently did a Google search for sleeping aids that would be safe for CF'ers and came to find a bunch of medical journal articles discussing how a significant number of CF'ers have poor quality sleep due to a number of different reasons.

Just curious...who has trouble getting to sleep/sleeping through the night and MORE IMPORTANTLY what drugs/treatment are you doing and has it helped? (I found some old threads about this but no one really talked about treatment)

Thanks in advance...

RJ
30 w/CF
 
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Emily65Roses

New member
I do have trouble with this a lot. Sometimes I sleep way too easily (though that's usually when I'm school, or busy a lot of the time and I get tired out), but most of the time, it's really hard for me to fall asleep (since I got home for the summer, I've been going to bed anywhere from 1:00am to 5:00 or 6:00am). When I was 16 or so, I started taking a few shots of vodka before bed just to be able to pass out for a few hours before school. Shortly thereafter, I told my mom and my shrink what I had been doing, so they started me on sleeping pills. I've been on them ever since. It's a prescription drug called Seroquel. I think it's primarily an anti-psychotic, but for me, it's just to let me pass out. And I love it. It works well for me.
 
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luke

Guest
RJ(and emily)

sounds like you have a sleep disorder, it may be secondary to your CF or maybe a plain ol' sleep apnea. There are treatments for sleep disorders and normally sleeping pills are not the way to go. You need to check with your pulmonologist about having a sleep study done. Just a side note, not all doctors know sleep medicine but most pulmonogist are pretty well informed. I used to run a sleep lab so I am still pretty up on it, if you have any others questions let me know.


Luke
 
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anonymous

New member
My husband also had trouble sleeping. He wasn't comfortable with taking more meds. so his doctor suggested using a bipap machine at night. This helped him quite a bit ( although it is noisy and it took a little time to get used to the mask)
 
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anonymous

New member
I had trouble with getting rest and found out 2 things. I was low on iron, and I needed a small supply of air only at night. I sleep with 1.5 - 2 lpm of O2 at night. Much easier than the sleep apnea face-mask, which I tried and found that to be comfortable you should be on your back.(Which I can't do)
 
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anonymous

New member
Em, pills are not the way to go in most of the situations listed on this board because it is often a breathing problem. Sleep apnea can only be diagnosed via an overnight sleep study done at a hospital or certified clinic, but just in case anybody doens't know sleep apnea is when you stop breathing, sometimes for a minute, sometimes two to three minutes and then your body "rushes" to catch it's breath and re-oxygenate itself. It is actually very common with people who have some sort of pulmonary obstructive disease-including CFers. Proper treatment at night for sleep apnea is a bipap machine or oxygen, depending on the severity and sometimes testing it out in the sleep lab to see which is more beneficial for the patient.

Sometiems the other culprut is waking yourself up at night from coughing-sometiems without even knowing it. When my husband had 2 sleep studies done, the concluded he was not apneic but DID wake him elf completely up 9 times from coughing (but only woke up and had a sip of water or opened his eyes 2 times) only ONE time of which he remembered and he came out of the REM sleep (there are something like 4-5 stages/level of sleep-somebody correct me if I am wrong on this) and went into stage one or two on 13 different occasions. Even though he didn't "wake up" it is still a disburbance to the body and the brain and does not constitue a full night of sleep. His doctors determined that this irregular sleep "thing" was contributing to his fatigue during the day. The didn't think pills were appropriate, and suggested oxygen (which mark said he would think about) but he hasn't done anything differently lately. He is just in school right now and he has the summer off so he can nap as he pleases but I am sure he will seek some "treatment" when school becomes a factor again.

I would recommend you really start with a sleep study though,

Julie (wife to Mark 24 w/CF)
 
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anonymous

New member
also em, reading back at your post, your problem seemed to be actually falling to sleep, so pills may be the right route for that situation. RJ's post said he never sleeps through the night so I am not sure if it is a falling asleep issue or staying asleep with him but he should start with a sleep study if it is staying alseep.


Julie
 
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blindhearted

New member
RJ,

I have a hard time getting restful sleep (sleep soundly all night). I can sleep 3hrs, 8hrs or 16hrs...it doesnt matter, I always feel tired and run down like I could use more sleep. And I also have a hard time getting to sleep. I get a "second-wind" late at night can could stay up until 5am with no problem (reguardless of the amount of sleep I get the night before). I talked to my doctors about it and they told me to try one Melatonin tab (3 mg). You can buy this at over the counter, no Rx needed. Its a natural supplement, not really a sleeping pill. Your body naturally produces Melatonin and it raises at night, which makes you sleepy. This tablet gives you an extra boost of melatonin. You take it about 20 minutes before your ready to go to bed. It knocks me out <img src="i/expressions/face-icon-small-smile.gif" border="0"> and with about 8hrs of sleep I feel pretty rested. It's something you can try, but just to rule out anything else that might be causing the problem, a sleep study might still be a good idea.
 
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anonymous

New member
Sometimes when falling asleep is not the problem and you find yourself waking up in the middle of the night; depression could be the culprit.

P.S. to the person that said they were using Seroquel - have you been on this for a long time? Seroquel is contraindicated in people with CF. Seroquel can cause hyperglycemia, has a drying effect on secretions, decreases respiratory rate.
 
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Emily65Roses

New member
I had no idea. I've been on it since I was.... 16 or so. So roughly 5 years. My doc knows I'm on it and has never said anything. How do you know this?
 
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anonymous

New member
I am going to school to become a pharmacist. We recently studied the antipsychotic medications and I have to say that it surprised me to see your post that you were receiving this medication to help you sleep. Seroquel can make one drowsy - but, it is not a sleeping medication. This drug is mainly used for Schizophrenia & Psychosis. This drug has ALOT of bad side effects - so I was surprised to see someone would be taking it for sleep. Especially at your young age. And especially someone with CF - our drug books state in bold print "use with caution in those with respiratory disease".

Seroquel is a Central Nervous System (CNS) depressant - this is how it affects the respiratory rate. This medication can also cause cough, dyspnea, and pneumonia. It can cause pneumonia because it slows down esophageal motility which increases ones risk for aspiration.

I hope they are doing routine blood levels (especially r/t liver & glucose). You should also have your eyes checked every 6 months for cataracts (med causes this).

Connie
 
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kybert

New member
i have the same problems rj. im having a sleep study done in august to see if there is a definate cause as to why i cant get to sleep and dont sleep through the night. at the moment i take stilnox [ambien] at night and caffeine tablets during the day. the caffeien tablets wake me up enough so i can burn a proper amount of energy during the day and fall asleep better at night, otherwise i end up lying down all day and find it really hard to sleep. i dont use the sleeping tablets everynight, only when i desperately need them. for example, if i have a big day ahead and i just cant sleep then i have no choice but to take one unless i want to be a walking zombie the next day. i hope the sleep study shows something otherwise the whole sleeping tablet, caffeine tablet, rebound insomnia etc cycle continues, like with most insomina patients.

i know a small part of my insomnia is caused by the bed i sleep on. its super hard and uncomfortable. it hurts my bones and it absolutely kills to sleep on my port. my partner chose it a few years back when we werent financially together so i didnt have much of a say of what bed to get. we are bumping the credit card up to buy a megasoft bed in the next month and im hoping that helps a bit! <img src="i/expressions/beer.gif" border="0">
 
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anonymous

New member
My dad has sleep apnea and it has bothered him all his life. He would snore so loud that it would wake me up and I was sleeping on the other side of the house, he would be very sluggish throughout the day and fall asleep at the drop of a hat. The last straw was when he fell asleep behind while driving, thankfully nothing bad happened. He went and did a sleep study and they said he was waking up about every 20-30min gasping for air and like Julie's husband, was not getting restorative sleep. He now uses the CPAP at night and it changed his life. no more snoring, he slept all through the night and was a lot less grumpy!!

I have onset insomnia and I have a horrible time falling asleep, but I rarely wake up during the night. I have been like this as far back as I can remember, even at the age of four and five I would be awake in my bed for well over an hour trying to fall asleep. I participated in several research studies, including Ambien and the clinical trials for Sonata, I got paid a ton of money for it too!!
Ambien works really good for me, but it can be addictive and I get short-term memory loss (on several occasions my husband would comment on how "crazy" I was in bed the night before, but I would remember absolutly nothing).
Sonata worked OK for me, but it had the same side-effects as Ambien. I've tried hypnosis, counseling, herbal treatments, every over-the-counter sleeping pill, etc... The most effective treatment was a mild antidepressant, Elavil, given to me for migraines. For the first time in my life I actually had no problem falling asleep. The only side-effect was a little weight gain and my breasts literally went from a size B to D in less than two weeks.

Do a sleep study, and your doctor can determine what's best for you. It may be breathing issues, stress, a chemical imbalance, etc...and each one has a different treatment. You deserve good sleep and your life will be much better and you will be healthier if you figure out what is wrong. Good Luck
 
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luke

Guest
Emily,

Julie about covered it. Insomnia is treated with "sleeping pills" but as far as falling asleep "to easy" that indicates you are not getting good sleep. As far as the insomnia goes, try to adjust your sleeping habits. I know being in college this one may be hard.

1. Have a set bedtime and equally important to a set wake times every day, preferably 8 hours apart (11-7 for example) and stick to it.
2. Try not to nap excessively, if you take a mid day nap that is O.K., but limit it to 1
3. Do not eat up to 2 hours before you go to bed, this is why the world is on prilosec. Reflux causes wheezing causing coughing causing to wake up at night.
4. Early evening exercise, strenuous exercise right before you go to bed will keep you up(no comment), get a walk in a few hours before, this will get your body ready for bed
5. This one may sound silly, go to the bathroom right before you go to bed; this will keep you from getting up as much.

One final thing...there are many types of sleep disorders not just obstructive sleep apnea.. but if you have the following symptoms you should be checked.


1. Wake up tired
2. Wake up with a headache
3. Wake up with your legs hurting
3. Fall asleep unless doing something purposeful.
4. Feeling tired "all day" no matter how long you sleep
 
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anonymous

New member
i once heard about a man who died from insomnia, i guess it's possible to just blow that fuse you know. But i guess it's good to have remidies whether it be booze, traquilizers, or pills. I had a bad bout of insomnia when i was 15.....i don't know why to this day--probly teenage stuff, but the most inportent things to do is meditate...i find it helpful to try and phase out the f**d up things in life and just settle down in general, it's all a mindset

Oh hey i remember a drug they gave to me the thing didn't do nuthing <img src="i/expressions/face-icon-small-smile.gif" border="0"> i believe twas called sonata? pretty name, but like i say it didn't do s*t <img src="i/expressions/face-icon-small-smile.gif" border="0">

tommy

19w/cf
 
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