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ZolliStar replied to Fred's discussion CPAP - cure worse than the disease
"I'm wondering: what prompted you to consider whether you have sleep apnea in the first place? Also, waking throughout the night isn't uncommon especially as we (*sigh*) age.  I seem to every 90 minutes or so. This pattern probably…"
Saturday
ZolliStar replied to ZolliStar's discussion New mouth device on the market
"You can try this website:  http://zyppah.com/ I have a MAD (mandibular advancement device). Dr. Steven Park evaluated my mouth and throat (not everyone can use a MAD, it turns out) and pronounced me a candidate for it. The truth?  I…"
Saturday
Mary Z replied to ZolliStar's discussion New mouth device on the market
"The link didn't work so me so I couldn't see the product.  I do have experience with a supposedly reliable boil and bite device.  I should know by now I have a small mouth and nothing regular size fits.  I don't think…"
Saturday
richard graham replied to ZolliStar's discussion New mouth device on the market
"If I thought something could work other than this lousy cpap that would be awesome"
May 22
richard graham posted a status
"I moved and have been sick a lot and can't use cpap because of cough and I'm depressed a lot"
Apr 26
Fred posted a discussion

CPAP - cure worse than the disease

It's ironic that before I was diagnosed with sleep apnea in 2000, I had no problem sleeping 8-9 hours a night. If I did wake up during the night, I had no problem falling right back to sleep, and I wasn't tired during the day.From the first night I brought home the CPAP I haven't had one decent night's sleep. Not one. I don't have any problem falling asleep, but I can't stay asleep. At first I was waking up after 4-5 hours and couldn't get back to sleep for a couple of hours. Now it's more like…See More
Apr 13
Fred updated their profile
Apr 13
ZolliStar posted a discussion

New mouth device on the market

I've been hearing advertising for this product over the past few days.  It's sold as something to help snoring, but as I look at the information it seems to me that it would work just as well as my mandibular advancement device (MAD).In other words, this could help some of us with sleep apnea.Read about it here.Anybody have any thoughts about this?  See More
Mar 31
99 replied to Mary Z's discussion AHI finally under five.
"Hi Richard I mainly use an empty humidifier as it reduces noise"
Feb 16
richard graham left a comment for richard graham
"When I can afford it I'd like to get New machine with heated tube"
Feb 10
richard graham replied to Mary Z's discussion AHI finally under five.
"I would like to see this forum active again as well. I will be more aware of what's going on"
Feb 10
ZolliStar posted a discussion

If you have trouble falling asleep....

I thought that when I got my sleep apnea diagnosis, that -- at last! -- all my sleep problems had come to an end.Ha!I have trouble falling asleep. Indeed, I rarely feel sleepy at night although I do feel tired. I even cut back on computer at night, etc., etc. (and installed f.lux on my computer) but I still had trouble. Now I'm doing something different: wearing special glasses (Uvex S1933X Skyper Safety Eyewear glasses). They block out the blue -- and they're making a difference! First I tried…See More
Feb 1
99 replied to 99's discussion colloidal silver
"i have purchased some silver the make my own colloidal silver"
Dec 21, 2014
99 replied to 99's discussion colloidal silver
"just add to the distilled water it is antimicrobial eg cleans your machine and is beneficial for keeping you healthy  from bugs germs viruses you get the picture and when you need to clean the humidifier out, put water on your plants the silver…"
Dec 21, 2014
Mary Z left a comment for richard graham
"If the heated tube works with your machine I would try that.  They also make covers for your tubing which may help some.  I think the heated tube may be your answer.  Keep us posted."
Dec 21, 2014
Mary Z left a comment for richard graham
"Richard, some folks just use the humidifier in a Passover mode.  They just don't turn it on, but let the air pick up moisture without heat."
Dec 21, 2014
Mary Z replied to 99's discussion colloidal silver
"99, where have you been?  Do you add the colloidal silver to your humidifier?"
Dec 21, 2014
Mary Z replied to Andy's discussion Resmed S8 AutoSet II - No Longer Collecting Data??
"I Andy, I realize I'm months behind your post.  I have no idea why your S8 would stoop collecting data.  I'm glad to hear  you're having such improvement with your apnea.  I have made great strides since I changed…"
Dec 21, 2014
Mary Z replied to Andy's discussion Resmed S10 AirSense - Anyone have one? Any feedback?
"Andy, just found your post.  I don't know anything about this new machine.  How are you liking your new ResMed?"
Dec 21, 2014
Mary Z left a comment for Kay Day
"Kay, I haven't been around myself and miss the old, active forum."
Dec 21, 2014
How often should you go in for a follow up sleep study? I went on C-Pap in 1995 and haven't been back for a study since. The only reason why is that it works, but I told a friend of mine who is a respiratory therapist and she said "oh my god" Get in for another study right away. So what is the norm?

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the fact that you are dreaming is good

it means  you are getting REM sleep which is much needed

Ernestine, sorry to hear about the job situation, I would try another Dr it can't hurt. Mine is the opposite I can fall asleep but wake up early and can't get back to sleep. CPAP won't always fix all your sleep problems, it will assist your breathing when you have an apnea. I thought the same when I started that it would solve all my problems, it doesn't but it has helped me dramatically compared to what I was like. I think your sleep problems probably are caused by your work issues. I was diagnosed with depression prior to SA and I don't know which came first but I think it was SA which then caused the depression. Unfortunately Dr's want to fix symptoms not causes. You may need to see someone like a Psychologist to talk you through your issues. I know you have done all the sleep hygiene things have you try meditation or mindfulness to try to calm or relax you. I didn't think much of it but have converted when the meds didn't work, I never wanted to be on them in the first place. Keep us updated on how you are going.

Ernestine, you may certainly have some depression.  Losing a job you loved is a major stressor.  Add to that the insomnia and poor quality of sleep, the OSA... A consultation with a psychiatrist- if you don't have insurance contact your local Community Services Board and see if they can help- might be helpful.  I wouldn't even speculate what the suggestion from a psychiatrist might be, but I do think it's worth a try.  Good luck.

To add something.  I was surprised that one of the things mentioned on a placard in my doctors office that improved sleep would be a result of CPAP.  I don't necessarily think this is the case.  Perhaps the sleep is healthier, but many of the sleep problems we had before our diagnosis and use of the machine carry over.  There are many reasons our sleep is disturbed that CPAP won't help. Stress, depression, insomnia, being a caregiver during the night, shift work, to name just a few.  I bought some sleeptime tea yesterday and have resolved to work on my sleep hygiene a bit more.

     I really agree with what Mary says. CPAP is not a panacea, which is something I learned a bit to my regret. I thought that once I knew the reason I was always so tired, all I had to do was slap on my mask, turn on my CPAP, and off to dreamland with getting lots of wonderful sleep to power my day.

      Hah!

      That said, I've learned that good leep hygiene is really important and makes a difference. Really. In addition, something that is wholly underappreciated is the powerful effect of exercise on how we feel.

      Below is a YouTube video that Rock posted some time ago. Please watch it,  particularly those of you coping with depression, which can be -- and is -- so devastating.

 http://www.youtube.com/watch?v=aUaInS6HIGo

Lots of interest and discussion here. I myself having been on c-pap for 16 years had a marked improvment in how I felt. I probably improved about 80%. The depression went away, the bone tired that I had went away, but I still need a nap most days, or I'll be quite sleepy if I have to sit down at a desk at work in the afternoon. I don't remember feeling that way years before c-pap, but that was a symptom for the five, or so years leading up to the OSA diagnosis. C-pap doesn't cure everything, but it certainly works very well. I don't know what kind of shape I'd be in by now if I didn't have it, or if I wound even be still alive by now without it.

Hi Ernestine and others

Your advice is excellent.

I just want to plead to people to use the new electric candles and not to resort to wax candles.

Especially before bedtime, wax candles can be a real fire hazard.

Thanks and have great and safe sleep.

Jan

ZolliStar said:

Ernestine,

      I was misdiagnosed at a sleep disorder clinic as having insomnia when, in fact, I have SA. The clinic never ordered an overnight because it was so sure that all I have (had?) is garden variety insomnia. That said, the doctors did convey useful sleep hygiene tips. I suspect that they would help you, so I'll pass them on.

      In addition to keeping to regular bedtime and waking hours, including on weekends, observe the following:

  1. No alcohol four hours before bedtime.
  2. No eating (other than a small, non-sugary snack) for 3 to 4 hours before bedtime.
  3. Close down your computer 60 to 90 minutes before bedtime.
  4. Lower your lights (for a while, I even resorted to candlelight!) an hour or so before bedtime.
  5. Do things that calm and relax you an hour to 90 minutes before retiring. Examples: read, listen to music, pet your dog or cat, chat with a family member or call a friend, etc.
  6. Go to bed when you're drowsy.

     Don't forget the basics like: a dark room, cool ambient temperature, and a comfortable bed and bed clothes.

     These are small things but all together, I've found that they make a difference.



Ernestine Webster said:

i was wondering the same thing about going in for a followup sleep study, as you know i have been on cpap for about 8 months now and am still having problems falling asleep even with going to bed as soon as i take the ambien, thinking i may be growing a tolorance to this sleep aid i started taking 300 mg of the Gab, capsule that was prescribed by my sleep doctor , i have been going to the same sleep doctor for the entire time of 8 months and he is always wanting to change mask which i keep telling him it is not the mask it is me but i still do not know why i still have problems falling asleep . i still see no difference in the quanity of sleep i get. the quality of sleep is better . i wonder if i should see a different sleep doctor and have another sleep study done. i have no doubt i have sleep apnea because of the way i feel when i get up in the mornings but i have insomina as well and really do not know where to turn to find out what the problem is with that.          

Many sleep meds can cause scary dreams. Gabapentin didn't do that to me, although it made me moody/grumpy (but didn't get me to sleep well either), but Ambien gave me absolutely disgusting (rather than scary) dreams after about a week and half of use. Different brains, different brain chemistry issues. If Gabapentin gives you bad dreams, talk with your doctor about using a different med. I've been on several, currently using Restoril (temazepam), but it's effect is lessening over time (been on it for about a year), so time to go back and see what comes next. I have RLS (restless leg syndrome) extreme SA (AHI at clinic 18 months ago was 63).

From my experience (have had a CPAP for about nine years) - a CPAP doesn't help me get to sleep, it improves the quality of sleep. Insomnia is 'orthogonal' to SA - you can have one, the other, or both. My specialist tells me that I have good 'sleep architecture' when I can get to sleep and am on my CPAP. The downside is that my body gets me absolutely wired at night time, partly related to thyroid issues. I had low thyroid and was taking levothyroxine, which also made me wired. I started taking iron, and my thyroid kicked back in, so I no longer take levothyroxine, but now my own thyroid levels make me wired. I used to go out and walk for a couple of hours a night (or more) when this happened, and then could sleep. Several years ago I developed RA (rheumatoid arthritis), with complications in my feet make my nightly walks impossible. Hence, the sleeping meds.

You need to work out these combination issues with your doctors. In addition to my sleep doc, I have been seeing an Integrative Medicine doc, and the supplements have made it possible to get off several of my meds by actually correcting underlying conditions. My GERD is gone, so don't need PPIs - was on Prilosec for several years - my thyroid is working, so don't need levothyroxine - my RA is improving, but still working on it. Insomnia is still an issue for me, but working on it - none of the supplements that I've tried work for me, almost anything that modifies GABA, and any SSRI causes me to be moody or unable to work (can't get things done). Valerian makes me grumpy. L-Tryptophan makes me more wakeful (so much for the stories of Turkey making us sleepy!'Supplements' are not necessarily better (or worse) than 'drugs' - supplements like these are really drugs with different label. Mineral supplements like magnesium can help sleep too, especially if you are not getting enough of it in your diet (which most of us aren't).

Find a good doctor that you can work with (that is a tall order, I know!) and see if you can correct the underlying conditions causing your insomnia, and you may be able to get away from the stronger sleep meds (and their side effects), or at least use them less.

I'm still not there yet - but taking it one step at a time.

Ernestine Webster said:

really do not feel my sleep specialist is listening to me , i thought once i had the sleep study and found out i had OSA i would get wonderful sleep but that has not been the case with me at all, the first week was great but after that first week it went downhill and has not improved without some kind of sleep aid and then it still takes me hours to go to sleep. i have tried all the sleep hygene i have read about . the medication my sleep doctor prescribed for me is Gabapentin 300 mg. , 2 out of 3 times i have taken it i have scary dreams . don't know if it is the medication or there is a problem with my mask and am not waking up to know it, all i know i dream about snakes everywhere and i horrified of snakes so i manage to get woke up enough to get out of bed  and stay up for awhile til i get settled down enough to get back to sleep. so i guess i need to start looking for a doctor that will hear me when i tell them i cannot fall asleep even with the cpap machine. i wonder if i may be depressed since i have lost a job i loved dearly and got laid off over 2 years ago and am not enjoying staying at home. thanks for listening      
Terry Vella said:

Ernestine, I know how you feel, I have the opposite, I can fall asleep but still wake up earlier than I want, but do feel 100% better now that I'm on CPAP. What med is Gab? There are a huge amount of meds you can take to try to get you back in the proper sleep pattern, but you don't want to stay on them too long and get addicted. Some may also interact with SA and not give you the benefits. If you are no happy with your sleep Dr, try another, it can't hurt and you have already been diagnosed with SA. I'm not sure another sleep study would be worth it just yet as your problem isn't during sleep it's getting to sleep. let us know how you go.

I am a similar position as you. I have insomnia from all the stress in my life. Was taking 30 mg temazepan and still not getting to sleep till midnight or later then had to get up at 4.  It god not help that I need to be on my stumick (sp?) to get to sleep. Have never gotten along with my cpap and after an issue during a surgery (mind woke up but the body did not) I really have an issue with anything on my face.  with help from God I am slowly working out the stress but still don't like anything on my face. I would try different masks but once you use one you have bought it.

Ernestine Webster said:

really do not feel my sleep specialist is listening to me , i thought once i had the sleep study and found out i had OSA i would get wonderful sleep but that has not been the case with me at all, the first week was great but after that first week it went downhill and has not improved without some kind of sleep aid and then it still takes me hours to go to sleep. i have tried all the sleep hygene i have read about . the medication my sleep doctor prescribed for me is Gabapentin 300 mg. , 2 out of 3 times i have taken it i have scary dreams . don't know if it is the medication or there is a problem with my mask and am not waking up to know it, all i know i dream about snakes everywhere and i horrified of snakes so i manage to get woke up enough to get out of bed  and stay up for awhile til i get settled down enough to get back to sleep. so i guess i need to start looking for a doctor that will hear me when i tell them i cannot fall asleep even with the cpap machine. i wonder if i may be depressed since i have lost a job i loved dearly and got laid off over 2 years ago and am not enjoying staying at home. thanks for listening      
Terry Vella said:

Ernestine, I know how you feel, I have the opposite, I can fall asleep but still wake up earlier than I want, but do feel 100% better now that I'm on CPAP. What med is Gab? There are a huge amount of meds you can take to try to get you back in the proper sleep pattern, but you don't want to stay on them too long and get addicted. Some may also interact with SA and not give you the benefits. If you are no happy with your sleep Dr, try another, it can't hurt and you have already been diagnosed with SA. I'm not sure another sleep study would be worth it just yet as your problem isn't during sleep it's getting to sleep. let us know how you go.

http://www.cpaplibrary.com/mask-trials

 

Richard,  this is the URL for a mask trial program.  For $14, the cost of postage each way, you can try out a mask for a week.  It's a relatively inexpensive way to try out different masks.  I tried out the quattro fx and didn't have to wait long at all to get one in the mail.  If you like the mask, buy it the least expensive place, or wait for insurance to pay for a new mask.  Hope this helps.

If you want less face coverage (I can understand that, it took my mother several months to get used to regular CPAP use, she didn't like anything on her face either), you might try nose pillows. I use the 'Breeze SleepGear' (Puritan Bennett- oops, "Covidien' now!), which only touches my nostrils - the rest of the set is on my head (they make a 'DreamSeal' version that covers the nose instead of nose pillows, I've used that one too. There are other nose pillows as well, some have a small band that goes around the head. You may find that once you have CPAP running that you can sleep on your side, sleeping on your stomach is sometimes a reaction to the apnea - your airway might be more open when on your stomach. The Breeze is excellent for side-sleeping (the reason I started using it), but might require customising a pillow to use when on your stomach. It's air vent is directly forward, and you don't want to cover it up or you will breathe too much carbon dioxide.

Definitely try different masks and even different CPAP machine settings to see if you can find a combination that works for you. It can take a while to get used to any CPAP configuration.

Some doctors may have 'sample' headgear that they will lend (or give) you. My wife, who is a recent CPAP user, just got a new mask from our sleep doc, as the first mask wasn't sized correctly.

If you have to buy gear, it's usually less expensive over the net, at sites like cpap.com and cpapwholesale.com than at most local providers - for equipment not covered by my insurance, some of the differences are staggering! When out of town and one of my nasal pillows went missing, the local provider charged me $50 for a pair of pillows! They apologised profusely while taking my money... CPAP isn't 'optional' for me, I must use it every night, so I paid the $50. The price on the net - $10. Sigh. I now make sure that I always have spare nose pillows in my CPAP bag!

Mary Z said:

http://www.cpaplibrary.com/mask-trials

 

Richard,  this is the URL for a mask trial program.  For $14, the cost of postage each way, you can try out a mask for a week.  It's a relatively inexpensive way to try out different masks.  I tried out the quattro fx and didn't have to wait long at all to get one in the mail.  If you like the mask, buy it the least expensive place, or wait for insurance to pay for a new mask.  Hope this helps.

Hi Ernestine!

Have you been evaluated for anxiety?  Even GAD which is Generalized Anxiety Disorder?

I deal every day with anxiety (am medicated for it) but a couple years ago I was hit with it so bad (for about 6 months) that I couldn't leave the house without crying, I hid important things when I went to bed, I couldn't watch anything on TV other than comedies (literally nothing but comedies), etc.

But my reason for bringing it up is because I had severe troubles falling asleep during that time frame and when I did finally fall asleep the slightest noise, or flash of light, would wake me up and I was then awake for the rest of the night and then dragging myself out of bed.

I do take Ambien regularly and during that time frame they had me on two different forms of Ambien, one "regular release" and one "extended release" and even that didn't help.

Based on what you've gone through lately you could be experiencing anxiety (instead of or in addition to depression) over what's going to happen, and you might not even realize that you're experiencing anxiety, and that might be what's causing troubles with falling asleep.

Also, I read that doing gentle yoga (easy stretching moves) can help.  There are also some "sleep CD's" (couldn't think of what else to call it but I have mine on my iPod and I put it in my iHome to listen to it) that you can play low in the background (I'm not talking the sound of waves or that sort of thing) and it slows you down and hopefully helps you to go to sleep.  I use "Chakra Chants" by Jonathan Goldman. :)

Just a thought... :)

Best of luck with it!!

Diane


Ernestine Webster said:

really do not feel my sleep specialist is listening to me , i thought once i had the sleep study and found out i had OSA i would get wonderful sleep but that has not been the case with me at all, the first week was great but after that first week it went downhill and has not improved without some kind of sleep aid and then it still takes me hours to go to sleep. i have tried all the sleep hygene i have read about . the medication my sleep doctor prescribed for me is Gabapentin 300 mg. , 2 out of 3 times i have taken it i have scary dreams . don't know if it is the medication or there is a problem with my mask and am not waking up to know it, all i know i dream about snakes everywhere and i horrified of snakes so i manage to get woke up enough to get out of bed  and stay up for awhile til i get settled down enough to get back to sleep. so i guess i need to start looking for a doctor that will hear me when i tell them i cannot fall asleep even with the cpap machine. i wonder if i may be depressed since i have lost a job i loved dearly and got laid off over 2 years ago and am not enjoying staying at home. thanks for listening      
Terry Vella said:

Ernestine, I know how you feel, I have the opposite, I can fall asleep but still wake up earlier than I want, but do feel 100% better now that I'm on CPAP. What med is Gab? There are a huge amount of meds you can take to try to get you back in the proper sleep pattern, but you don't want to stay on them too long and get addicted. Some may also interact with SA and not give you the benefits. If you are no happy with your sleep Dr, try another, it can't hurt and you have already been diagnosed with SA. I'm not sure another sleep study would be worth it just yet as your problem isn't during sleep it's getting to sleep. let us know how you go.

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