I'm just so tired

Hi,
I have also had a really hard time. At one point my respiratory therapist suggested I just forget it for one night. I never did that because I had had the fear put into me. I am so sorry you have had such a hard time. I have too. I even read your letter to my husband and he was astounded that you sounded so much like me. Any how, you need to do what is right for you. I finally found that some things work sometimes. Not every time, sorry. I got a soft mattress pad, I got a side pillow that my nasal pillows don't get in the way of. I take one Aleve pill, and some Chamomile tea earlier in the evening. I make sure the hose (the hose has filled with water a couple of times in the middle of the night talk about a rude awakening!) and nasal pillows are clean and dry. I make sure the room is as organized and clutter free as possible. I try to have the best attitude possible, and believe me, I'm not that positive about all of this yet, but I will say, it has become somewhat better. I still wake up a great deal, but, I do sleep a bit better. It has been about 3 months. I think the best things so far are the soft mattress pad and side pillow. For some reason when I am sort of enveloped in the pillows, I am finally able to relax a bit and if the nasal pillows are not bugging me. I also had to get through the anger. I'm not all the way through it yet, but I do think it is better. I know all of this is not much help when you are at the end of your patience, but maybe it will help if you knew you were not alone.
I was on an anti depressant for an unrelated problem in the beginning. With the help of my Dr. I decided to quit to see if it helped the apnea. It took some time, but it did. I try to exercise more, and this seems to help also. Just some thoughts. I am still working on it and looking forward to a day when it does not take up so many of my thoughts.
I know this sounds a bit disjointed, but I am just trying to be honest. Best wishes...

Let me be the first to say YEAH! I'm so happy for you!

I am doing pretty good with my nights, but I'm also still taking naps on the weekends, which has been my weekend routine for years. Woke up today with zero events today, which was great.

Keep it up, it'll get better.

jjmahern wrote:I was finally able to sleep with CPAP for a few hours. I went back to bed at 10 and slept till 2pm. I hope tonight I can sleep with it. Thanks for all your understanding. It sometimes seems so hopeless.

Reneee wrote:Hi,
I try to exercise more, and this seems to help also. Just some thoughts. I am still working on it and looking forward to a day when it does not take up so many of my thoughts. I know this sounds a bit disjointed, but I am just trying to be honest. Best wishes...

Reneee, anything that you post that can possibly help others is significant. It can be another tool in the toolbox. And all newbies need them.

Have you thought about registering on the site and posting about your therapy/equipment etc? There are others that can help. Just a thought.

Good evening JJ.

One of our forum members suggested a book to us that I finally started reading at the beginning of the year. It's called, "Sound sleep, Sound mind" by Barry Krakow, M.D. Only one time at the beginning of joining the forum that I ever made mentioned of and that is I've been using Zolpidem (generic for Ambien) for the last 16 years. Back in 1996, I went to Israel with a church group. I had told my neighbor about it and suggest that I take Ambien for better sleep and making the time zone switch easier since the United States and Israel are 9 hours apart. I NEVER knew that one get to sleep so quickly using this capsule. Since the beginning of the year, I have been trying to lessen my psychological dependence on the drug. While a group of us xpap folks were meeting on monthly basis here in North Denver, I had told my group about it. It took A LOT of courage on my part to discuss this with the group, and again as I speak to you and to the forum. I had a lot of support from the group and would email them once a month of my progress. The book is VERY thorough in describing sleep and how to deal with different issues. In addition, it gives you a variety of suggestions. What works for me may not work for you. At the same time, I was seeing a drug abuse counselor to get some good feedback on this particular issue. It was working for a while. The most I’ve taken is 5mg and biting it to a third every night. It’s not that I decided to not follow the suggestions in the book, I just got lazy and stopped trying. Plus, I don’t if you’ll know what I mean in that it is like an old friend that you’ve been close to for many years, and saying so long is not very easy. Your post reminds me that I need to pick up the book again and start working at this again. You know what the cool thing about this book is JJ? You can even use this book while on prescription drugs and/or other sleep aids. He does a very good job of addressing this issue. I highly recommend this book.

The first year I had started using cpap, I wore it for only 2 hours a night. Then one of my husband’s friends had a good talk with me about using the xpap and I was wearing it longer. However, not as consistent as I should be, meaning not being compliant. I can venture to say that for the 4.5 years I have not been fully compliant. Someone on the forum stated not that long ago he/she was finally 100% compliant, it really saddened me that I couldn’t say that about myself. So, for the last 18 days, I’ve been adding this to my sleep journal: Was I compliant last night? For me what I mean by being compliant is that I have to wear my mask for more than four hours and sleep with it for the duration of my sleep. One of the things that was preventing me from reaching that goal was to snuggle up to Hubbs till I got sleepy, role over and not attempt to mask up for the night. By that time, I was so fully relaxed. I didn’t want to mask up until I got up in the middle of the night which gave me approximately 3 to 3.5 hours on the xpap. Not good. Now, once I’m ready to turn the light off for the night, I mask up right away. If I wish to snuggle up to Hubbs, then I snuggle from a small distance. Doing this one little act has greatly improved my compliance. For the last 18 days of my journaling about this, I’m happy to announce that I am nearing that goal. For the last 18 nights, 12 were in my definition of compliance, yay! I don’t wish to imply this is your situation JJ, just that this was one hurdle I had to overcome to wear my mask.

Lastly, If you’re financially able, the other thing I would suggest is to see a counselor. Someone you feel comfortable with and can trust. There may some underlying issues that you may not even be aware of that need to be addressed when it comes to sleep. I sprang my left ankle back in May. For whatever reason, it has effected my dreams turning them into very disturbing dreams which I had never experience before. What is uncanny is that I’m very much an adult and one sprang ankle should not have effected my dreams the way it has even up to now almost 6 months now.

For many of us to reach sleep/xpap nirvana and get the much needed restorative and restful sleep, we’ve had to overcome some hard issues. There are a few of us that reach sleep/xpap nirvana and adapt very, very quickly. There are some. However those are few and far between. As someone as suggested here or on another thread we all take baby steps. Many folks on this forum are very, very helpful and will go to great lengths to see each one of us succeed. In time, you will too. First you’ll be take small steps which will in turn create small victories, each small step will lead to bigger victories. I applaud you on signing up on the forum and giving us your story, that is one step in the right direction. Give it time JJ. Folks are ready to offer some very helpful advice based upon their own experience with xpap and other sleep issues. Get something to drink, sit back and read, and ask lots of questions.

Remember little steps do add up in time.

Starlette

*Offers JJ some warm milk and cookies.*

Here I am again. Sleepy tea, melatonin, ambien, mask on reading my book. I keep falling asleep while reading but each time I put the book down, few minutes later the pillows feeli like they are suffocating me and intolerable. I take them off and lay in bed a while. Figure I don't feel so sensitive now and I'm
Quite tired and they might work. But lo and behold same thing happens again. I don't want to sleep without it but it seems I have two choices: sleep without it or keep trying and ultimately get hardly any sleep cause I keep trying to make it work.

What I don't understand is how come it was fine to sleep with this morning and even while reading but tonight nothing. Makes no sense and I really need to sleep tonight even if its without. This is so hard.

jjmahern wrote:What I don't understand is how come it was fine to sleep with this morning and even while reading but tonight nothing. Makes no sense and I really need to sleep tonight even if its without. This is so hard.

I wonder if you got just enough sleep earlier in the day that it's getting in the way of being able to fall and stay asleep tonight. In no way am I saying you shouldn't have slept during the day, I would have done the same thing, get sleep whenever and wherever I could. Just wondering if it's a possible factor.

This is hard, I couldn't agree more. I know last night you asked for no suggestions but when you feel up to it I have a suggestion about the nasal pillow mask. Nothing earth shattering, just an idea. Meantime, hang in there. Even though you keep waking up, every time you put the mask back on and give it another go, you're fighting back and not letting this thing defeat you. From the replies in this thread it's easy to see many of us have a lot of empathy and can relate to what you're going through, I hope that helps at least a little bit. We get it.

jjmahern wrote:Here I am again. Sleepy tea, melatonin, ambien, mask on reading my book. I keep falling asleep while reading but each time I put the book down, few minutes later the pillows feeli like they are suffocating me and intolerable. I take them off and lay in bed a while. Figure I don't feel so sensitive now and I'm
Quite tired and they might work. But lo and behold same thing happens again. I don't want to sleep without it but it seems I have two choices: sleep without it or keep trying and ultimately get hardly any sleep cause I keep trying to make it work.

What I don't understand is how come it was fine to sleep with this morning and even while reading but tonight nothing. Makes no sense and I really need to sleep tonight even if its without. This is so hard.

Hi,

Wow, that is exactly what happened to me yesterday. The nasal pillow mask that I had felt great when I took a nap in the am but felt extremely uncomfortable when I tried putting in on at night. As a result, I switched to my quattro FX with neck collar. Unfortunately, I didn't get much sleep on the machine but I digress.

Anyway, I am sensing from your post and I could be totally wrong that you have mask issues that are interfering. So when you are ready, you might want to contact Kaisgram for a mask suggestion.

What happens when you don't take anything for sleep? Just curious.

49er

PS - The Krakow book that was suggested is excellent. I really need to go back and reread it.

My take on amitriptylline depressing some people is based on having seen them be put on Elavil (brand name) by the neurosurgeon in whose office I worked, and having the patients return (not many of them, but a few) feeling worse than ever, yet not because they had been depressed previously or because they were otherwise patients with psychogenic or similar problems.

Julie wrote:My take on amitriptylline depressing some people is based on having seen them be put on Elavil (brand name) by the neurosurgeon in whose office I worked, and having the patients return (not many of them, but a few) feeling worse than ever, yet not because they had been depressed previously or because they were otherwise patients with psychogenic or similar problems.

What was the dosage that those people were taking that you saw?

I have been taking amitriptylline 20 mg at bedtime only for over 2 years now. It does help me sort of sleep through the pain.
You know my history...chronic neck and back/pelvic pain due to some nasty arthritis.
Never had anything that could or would relate to depression symptoms during this time.
Many, many years ago I did take it at the normal higher therapy doses for depression/anxiety and that made me a walking zombie feeling horrible.

jjmahern wrote: few minutes later the pillows feeli like they are suffocating me and intolerable. I take them off and lay in bed a while. Figure I don't feel so sensitive now and I'm
Quite tired and they might work. But lo and behold same thing happens again. I don't want to sleep without it but it seems I have two choices: sleep without it or keep trying and ultimately get hardly any sleep cause I keep trying to make it work. What I don't understand is how come it was fine to sleep with this morning and even while reading but tonight nothing. Makes no sense and I really need to sleep tonight even if its without. This is so hard.

Good morning JJ.

For those that are not accustomed to wearing a mask at night, it can be rather overwhelming for anyone of us. Remember the word “baby steps” JJ. It takes a while for us to feel comfortable wearing a mask. When I started wearing a full face mask talk about change. I wanted a FFM because I am a mouth breather. The first FFM that I tried was an Ultra Mirage FFM. I really liked it, but my face didn’t because my face had issues with air touching so much of my skin. Then I switched to the one I currently use which is the Hybrid FFM which now is used as my main mask. It combines wearing the pillows with wearing something over the mouth which the air hardly touches the skin of my face. The whole concept of wearing a FFM took me a while to get comfortable with and trust that I was going to wake up the next morning. Remember, I’m now covering both nose and mouth which are the only two ways to get air in the body. Very stressful. I say all this because in this last post it sounds to me like you may be having issues with adjusting to wearing a mask. One thing that you can do is wear your pillows during the day while reading, watching TV, etc. as long as it takes for you and your brain to say, “OK, we can do this. It won’t hurt us. This is a good thing, not a bad thing.” I had to do this (not as long) when I started wearing my FFM. By the way, the Swift FX for Her is a great mask, it really is . I have one of those also in my stash. When the mood arises that I don’t feel like wearing a FFM, I have yours and the Aloha to turn to.

JJ, this is truly a whole new way of approaching your bedroom and sleep not just for you but for everyone. No one will say otherwise about it. Like anything we do for the first time that we’re not used to, it will feel really weird. In time, you’ll get used to it. We’ve all been there.

Starlette

Echoing others responding to your finally getting four hours sleep: That's generally almost everyone's experience to varying degrees. It's rare to find someone who initially puts on a mask and conks out for eight straight hours. There are just too many things going on in the adjustment process for that to happen. Consider yourself a normal CPAP user. It gets better as time passes

But I had been able to easily fall asleep with the mask on the prior last two weeks or so. I understand that it takes time but it has been just about a month now and when I started this I was already significantly sleep deprived. I keep fighting and doing everything I can to make it work but to be honest, I am not sure how much leeway I have in terms of sleep deprivation. For a month now I have had a few days that were better than before I started and most all the other days are worse than when I started. I am more exhausted, more emotional, more hopeless. I am not sure if I am explaining how bad it is. I am so tired that I have not taken a shower in seven days. I am too tired to cook so I eat fast food or convenience food and due to that I am consistently over budget and scraping to make ends meet. I live alone and haven't got a partner to lean on if I lose my job. I work as a contract worker in an office and don't get paid when I am too tired to work, or have to go to the doctor or the DMEs, which never seem to be open evenings or weekends. The only bright spot is my buddhist community that are supportive of me emotionally. I also have meditation that I try to do everyday but since I started the CPAP has been really difficult to do because I just keep falling asleep every time I meditate. I do not want to kill myself or anything like that and yet I cannot see how I can live like this for much longer. People here say they have been dealing with this for months and years and I'll be honest, if I thought I would have to live like this for months and years, I might think about options. I can't look for a full time job because I am so exhausted that I can hardly think straight most days and am forgetful. My contract is set to end in December and I have no idea what is going to happen then. My insurance pays for very little of my medical bills as it is insurance I got from a temp agency before and now it is on Cobra and to be honest I am not sure how much longer that will last. I am currently racking up bills that I am not even sure how I will paid as I am barely making ends meet now. I am also fairly sure I have an underlying insomnia issue as well. I am supposed to be getting a call from another dr to help with that, which I most likely won't be able to afford either.

I am not trying to say that no one else has problems or issues, I am simply trying to make people understand the difficulties I am having. I am doing everything in my power to get used to the machine. I have been wearing it for hours every night before bed, I am going to bed earlier so I have at least an hour or more to fall asleep, I am making my apt dark for hours before I go to bed, I am not having any caffeine after noon, I am drinking sleepy time tea and taking melatonin, trying not to take ambien too much although that seems not to even helped last two nights because I have been barely able to keep my eyes open and yet couldn't fall asleep as the mask felt like I couldn't breathe (even if I could it felt intolerable). I tried when i felt that way to concentrate on my breathing as I do in meditation sometimes and yet the feeling doesn't seem to subside.

I reason I asked for no suggestions is first because I really just need to be heard by someone who has an inkling of what I am going through because my friends and family seem like they want to help and understand but they just have no idea. they keep asking me if I am exercising which makes me so annoyed. If I could exercise, don't you think I would be taking regular showers, cooking, cleaning my apt and so on. If I don't have enough energy to do normal everyday tasks, how the hell am I going to exercise. It feels like tremendous exercise to me to get up and get to work. To walk to and from the bus. To work for 8 hours. To come home and feed my cats and feed myself. The second reason is because the readers are only getting a partial view of what I have or haven't tried or done, I keep getting suggestions that I know are meant to be helpful but just annoy me like the exercise comment from my friends and family. and then not only do I get annoyed but have to type in again how I have already tried that or I can't afford that and so on.

I don't need fixing (at least I don't need others attempting to help me fix things cause it just makes it feel worse), I just need understanding and compassion. Support and encouragement. I am trying so so incredibly hard to keep my chin up and to keep trying and to stay on track and sometimes it is just all too much.

I am sorry I am going on and on and I certainly don't mean to offend anyone or make anyone feel bad for trying to help. I am simply trying to be clear about what I need in terms of help and support at the moment. You guys are the only ones who really know what I am going through. You are the only ones who know what it is like to be so utterly tired and exhausted all the time. Who know what it feels like to want to give up or to simply go to sleep and not wake up because you just can't face another day of not enough sleep. I have been looking this morning to try and find a local support group here in Seattle and I can find nothing but meetings at a hospital every six weeks but those are presentations on new equipment and so on, not real support group and apparently there are only one or two of them.

jjmahern wrote:Here I am again. Sleepy tea, melatonin, ambien, mask on reading my book. I keep falling asleep while reading but each time I put the book down, few minutes later the pillows feeli like they are suffocating me and intolerable. I take them off

What's your pressure setting? When you wake up suffocating, look at the machine and see what pressure it's blowing at. What do you mean by suffocating? Can't inhale, can't exhale, what? If you consciously inhale and exhale through the pillows, do you feel the air flowing?

Have you tried manual CPAP, and at what pressures?

I'm so sorry for your situation, and I wish I could help. I just want to comment on this one thing you wrote, because I had the same problem with my mask. I was using the XS pillows, and a starting pressure of 4. I felt as if I couldn't breathe. I moved up to the small size pillows and changed my starting pressure to 5, and then had trouble feeling as if I couldn't exhale at the higher pressures which would wake me, so I adjusted my EPR to 3, from 2. Made all the difference in the world to me. Had I not done those things, I probably would have come close to abandoning my efforts.

jjmahern wrote:...and yet couldn't fall asleep as the mask felt like I couldn't breathe (even if I could it felt intolerable). I tried when i felt that way to concentrate on my breathing as I do in meditation sometimes and yet the feeling doesn't seem to subside.

.

Again, no offense, but the last two posts are exactly why I don't want suggestions.

I have had it on cpap mode at 9 for almost a weeke now. I was able to fall asleep with it yesterday morning with no problem but somehow the night before and last night it felt interoperable. Maybe it is the heat from the humidity even though I have it at 2. Maybe it's my room heat that I turned on because I kept waking up with water in my nose and haven't got a barrel cozy yet. It doesn't matter. I'm working on dealing with those issues.

I just need some support compassion and understanding. Otherwise I keep having to post reply after reply to tell people why what they are suggesting isn't helping and for a person already emotionally on the edge, it is torture. Please don't reply if you haven't read the whole thread and/or want to offer fixing advice.