calcody is phyl and I am new [posted hours of use question]

[phyl]

I am not sure how I became calcody, but my registered name is phyl. I hope when I post this, it will say phyl. Anyway, I am a newbie. Went to the Stanford Sleep Clinic for my testing and prescription. I am a gal of the 60's and usually was describe as bubbly, hyper etc. I had a great career teaching, then raised 2 children who are now 25 and 21. I actually first felt the consequences of sleep deprivation when my first child was born. My doc just said it was par for the course, blah, blah, blah. During the years of raising my children, my marriage suffered due to issues that there is no need to name, but I became quite depressed and then was diagnosed as ADHD. The use of adderall improved my energy and counseling started me on a good life road. However, I was so tired. I was shocked at what other women my age could do. I thought of myself as lazy, not motivated, a looser. I gained weight and isolated myself. Year after year, I asked my family physician at each exam, "Why am I so tired all of the time". She suggested some tests each year...blood, urine, heart, and on and on.
Finally, at my last check-up, my doctor was visiting with an intern and things were kind of chatty etc. I challenged my doc in front of the intern by telling her that I was very frustrated and she had never helped me. That got through to her. She and the intern spent an hour questioning me, reviewing my test data, and then suggested the Stanford Sleep Clinic. Long story short...moderate to severe sleep apnea. I have had my cpap for a month. I have tried to be relaxed and tried not to obsess about using the cpap. I found that I needed a chin strap with my nasal pillow. I tried a Fischer/Paykel full face mask, but it was uncomfortable. I seem to be doing everything right, or at least accoring to the results that my machine displays. However, it seems that around 4 hours of use, I wake and feel uncomfortable and take off my gear. I feel that I have made progress, as I have only been in treatment for a month. I was expecting to wake up after the first night or two with unbounded energy and be the woman I once was...didn't happen...some days I do feel better...I haven't charted anything so I don't know what factors attribute to that. About 3 nights ago, I dozed off reading and did not put on my gear. For the past two days I have felt awful. Thus, I am assuming that although I wasn't full of energy, I was feeling better. That's my story....

[kteague]

Phyl,

Welcome to the forum. Your story has a familiar ring to many of us here. You are on the right track, so try not to be disheartened by what seems to be slow progress.

Four hours a night is better than not at all, but then you still have the rest of your night with your body being assaulted by the sleep apnea. When my equipment aggaravates me in the middle of the night, sometimes getting up for a few minutes and starting over helps. Better than giving up for the night. I recently broke down and started taking Tylenol PM and it has really helped me with the frequent wake-ups.

Some others will probably weigh in here on the more technical aspects of treatment. I mostly want to encourage you to do whatever it takes to keep the machine on every moment you're asleep. That's assuming all your settings are right and the treatment is therapeutic. Wouldn't want to suggest you should take something to help you sleep if you're waking up from still have apneas or another problem.

Hang in there.

Kathy

[phyl]

Kathy...Thank you for the encouragement because I really need help. I find myself feeling embarassed or uneasy using the cpap with my husband around. And I have been married since 1970 ! I know that I am very early in the process at only a month, but I am experiencing the emotions I think that many experience. I appreciate your time.

[goose]

Hey Phyl,
Welcome!!!


You have found a great place to find information and support.....Be sure to check out "Our Wisdom" and "New Users" above....you will discover a wealth of information!!!
There are a lot of people here who will feel your pain -- me too, but I always say, "it's getting better". And it is....

I've been on the xPAP for about 15 months or so and I'm still waiting for that "magic moment" when I wake up full of energy, ready to run a marathon (like the morning after my titration).......Hasn't happened!!!!!
Now. That said, I feel much better than I did before I started. I don't expect miracles -- I didn't get here overnight, so the fix won't happen over night.
Don't get discouraged. Keep working at it. It sounds like you're still looking for a mask that works for you -- it's out there, and if you have a DME that allows you to try masks take advantage of that service!!!
I've got a couple great masks that work really well (ComfortGel and Headrest), but I'm still in search of that "Perfect Mask" (it really doesn't exist, but it's the Holy Grail of xPAP, so I continue the search....)

I'm 58 and have just recently been diagnosed with ADHD so I'm just starting down that road (I've said for 20+ years that if I was in school today, I'd be one of those drugged kids -- turns out I've been right) -- I'm hoping with everything else I have going on, it will be one more piece of the puzzle.

Four hours a night is better than no hours a night.....I was sooooooo looking forward to my treatment (I was tired of being tired -- sound familiar??) that I've been getting 8 to 10 hours a night, every night (save one) since I got my machine. Slowly but surely I've worked through my mask issues and I'm very comfortable with all my gear. You'll get there also, but it does take some time.
Since being on the treatment my blood pressure is down, my diabetes numbers are steady, I do have more energy and in general I feel I'm doing better!!!!
Keep at it -- you'll get there!!! If you have questions, issues, problems etc., just fire up the cpaptalk.com forum and we're here. Again, welcome to the family!!!! Keep us up on how you're doing!!!!

Take care
cheers
goose

[phyl]

Goose....Thank you for the words of encouragement. I would bet that once you get on meds for adhd, you may be getting close to 'the grail'. I need to visit here often and get myself better educated and also to feel the connection, if you know what I mean. phyl

[Slinky]

Hey, Phyl, WELCOME to the forum! You've certainly got some of the best equipment!

If it is any consolation my first 30 nights on CPAP were the worst 30 nights of sleep I'd ever experienced except my two nights of titration (I failed the first titration and had to do a second wherein I didn't do much better!). But sleep and rest gradually improved from then on. For me its been a long, slow process but there's no question that it is working and I'm doing so way much better than before CPAP!

Since you "had" a great career teaching I assume you are now retired. So, since you're uncomfortable w/donning your "gear" in front of him, let him go to bed first and you stay up a little later until he is asleep. Your kids are grown, so when you wake up during the night, either put the mask back on for 15 minutes and if you haven't drifted off back to sleep again, GET UP, go to your 'puter and browse thru this forum and all the great information links, when you get sleepy, put your mask back on and go back to bed.

During the day when hubby isn't around grab a good book, settle in front of the TV, do a crossword or jigsaw puzzle, do some embroidery or crocheting or knitting or whatever will take your mind off that CPAP and mask but put the mask on and turn the CPAP on. Get used to the feel of the mask and pressure whilst you are occupied doing something other than "I need to get back to sleep". It'll mess up your data a bit as we breathe differently when awake than when asleep - but your compliance data will look good and that should keep your local DME supplier and insurance company happy. (See, there's a bright side to everything if you look for it).

Your Adderal dosage "might" be interfering w/your sleep. You might want to check possible side effects of any and all medications and 0TC products you are using for sleep related side effects w/your pharmacist and then w/your family doctor. Who knows? W/successful CPAP therapy you just might be able to eventually not only reduce your Adderal dosage but maybe even eliminate it all together!!

Patience, Perseverence, a Sense of Humor and the folks at this forum will get you thru this and sleeping well and feeling rested. Just give it and us some time. Rome wasn't built in a day and obviously your OSA is not a recent phenomena for you.

[goose]

Great post Slinky!!! Also great ideas to help work things out!!!!

Phyl, I'll probably start the regimen of meds in the next few weeks. I'll have to work with the doc to ensure that I take them in the AM so that they won't interrupt sleep - balancing all the meds we take for our various afflictions can be a real challenge.....I don't want to take any meds that will amp me up at bedtime!!!!
Thanks for the good words -- appreciate it!!!! With a little luck and "better living through chemistry" I'll be better soon <diabolical laughter >.......

Take care
cheers
goose

[birdshell]

Welcome to our forum, which I humbly consider to be the best on the Internet. (If anyone knows of one better, I'd like to know!)

BTW: Sometimes, a user on the same ISP is listed as one's former name--it happened to me when I used AOL as my provider. All of us from AOL would be listed under the poster's name. I've not seen a similar event since we got the new format--but that isn't to say that we won't see it in the future, for whatever reason.

We are all different. My brother was a cpap newbie as of January, 2008. He started with about 4 hours, for whatever reason, but found that he SLOWLY increased his sleep time until he was approaching 8 hours in April. I do not think that he had gotten much past the 4 hour mark by the end of his first month.

IMHO, it seems that there MUST be something bothering us with the mask if we are ripping it off at night. I think that Slinky's suggestion for daytime acclimation to the mask is a good one. While awake, wearing the mask and using that machine may point up any problem you may be having with the fit or the comfort after 4 hours of sleeping. (I hope you do not have to wear the thing for 4 hours to determine this!) Sitting may not reveal the problem; if not, try lying down as that can affect the fit of a mask.

Hang in there. I have been told that 4 hours per night constitutes compliance to insurance companies. That may not be of much comfort if you are still tired, but at least it is one less problem...especially if you follow Slinky's suggestions!

Best wishes and keep on coming 'round,

Karen
Who has been a bie

[sleepycarol]

Hi and welcome to the forum!!

Before I found I had sleep apnea I was seeing a counselor for some problems I was having in my marriage. I ended up seeing a psych doctor to get my antidepressants where they needed to be. During one of our visits he made the remark that he couldn't believe that I hadn't been diagnosed with ADHD at some point. I am 54. I just looked at him and said, well I have a son that was diagnosed at 3 years old and was told it was severe and I have a brother that has all the classic signs both as a child and as an adult.

For me drugging my 3 year old son was not the answer. We went through behavior modification therapy, diet changes, and other avenues. I truly believe our diets play a big part in it. Much of the processed food we eat has been chemically enhanced, altered, etc. We found processed meats, red food coloring, sugar, caffeine (although for some it helps), and other diet changes helps. It took alot of hard work to help him without the drugs -- but worth everything it took. He is now 30 years old, has never been in any trouble of any kind, has a great wife, 2 wonderful kids, a full time job, and a part time job. He has thanked me numerous times for showing him how to cope with life in a positive manner!!

I teach school (special education) and truly believe that many are diagnosed ADHD inappropriately. The drug companies are making millions of dollars on this "disability" and are bombarding the media with advertisments for the "fix". Yet, to my knowledge there are no testing methods that can accurately test for this "disability."

As to my diagnosis of ADHD, the doctor did tell me that I had excellent coping skills to deal with it and feels that the behavior modification therapy I went through for my son helped a great deal. I would recommend this to any that feels they or a loved one truly is ADHD.

[Slinky]

EXCELLENT POST and information, SleepyCarol!!!! EXCELLENT!

[birdshell]

Sleepycarol,

You make some good points about ADHD. When I started to teach in an all-kindergarten building, I started to wonder about the caffeine issue. I watched parents, waiting in my classroom (aka, gym) to pick up their children who were drinking caffeinated drinks, usually (soda) pop. Their children would often come in and ask for a drink. That told me that my students were often doing the same thing at home. Smaller bodies need less to be affected by the caffeine. Is it possible that caffeine in these drinks is causing a lot of the "hyper"activity? Another factor that jumps out at me: there is a difference in brain function if the drugs that hype up the rest of us are subduing others.

I have seen children who were like Dr. Jekyll and Mr. Hyde, respectively, with and without their medication. These children need their medications. Each month, they MUST see their doctor for a new prescription. This isn't always possible, so sometimes they don't have meds for a short time. The most heart-wrenching thing is to have one of these students get back to their meds, and come in to apologize for their previous days' behavior.

I truly don't know where the answers lie, but SOMETHING is causing the problems such as ADHD, autism, and any number of other health problems to occur more now than ever before. I hope that something can be discovered that will help.

However, I suspect that if parents were willing and able to put in the time and effort, many of the ADHD children COULD learn to manage their activities better. Sleepycarol, you have demonstrated this, haven't you? The same is true of sleep apnea (really almost all SDB), as well, isn't it? Those of us who manage our treatment are doing far better than those who are not compliant.

BTW, one of my school district's most successful and favorite administrators was definitely ADHD! He would squirm a bit and destroy foam cups and napkins at meetings, but he had definitely learned to cope. Maybe he learned this because we had never really identified ADHD when he was a kid!

IMHO, ADHD people are actually energetic, have remarkable ability to pursue their interests, are often extremely productive and are NEVER boring. We all have some behavior that needs to be recognized and channeled properly, don't we?

Karen,
Who could use some more ADHD characteristics

[goose]

I've had ADHD essentially all my life. It just wasn't diagnosed until recently.....
Birdshell is correct about high energy -- I always had a high level of energy, I just couldn't focus enough to use that energy to get anything done.....

I also think it can come and go depending on what else is going on in your life and what other substances you are putting into your body -- including caffeine.
There was a time way way back when I was a "speed freak" and during that time I was more focused and more able to get things done than ever in my life. When I "re-habbed" myself off of the meth (1971), my focus waned -- but I know I'm much better off without the level of drug that I was doing - hell, if I'd continued I'd have been dead 35-40 years ago.
If the doc ends up giving me a stimulant for the ADHD I believe that it will not cause the addictive effect that I experienced in the past -- I am smarter now, and it will also be controlled -- by me and the doc!!!! I do face it with some trepidation!!!!

What are my goals for treatment?? I'd like to be able to sit down and focus long enough to write a program/script again. I'd like to be able to concentrate on my breathing meditations (a basic Buddhist exercise I can't do because my brain won't slow down long enough to focus on breathing). I'd like to be able to focus on something, anything and finish it. I'd like to be able to sit down and watch a movie without pausing it 3-4 times because my brain has wandered off to somewhere else........
Small stuff, but things I haven't been able to do most of my life.

I was a "problem child". So called gifted. I was always told that if I'd just apply myself, I could do great things in school -- I just couldn't concentrate long enough.....I got A's and B's without trying at all -- I think of what it would have been like if I'd been able to focus on what was going on around me. In those days it wasn't a well known affliction as it is today, and my folks were struggling to do the best they could. They tried and did the best they could given the times and the situations.
I have said for many years that if I was in school today, I'd be one of those kids on drugs for hyperactivity......Class clown, disruptive, hard to sit still, bored to tears -- in my whole life I have only found one teacher that could keep my attention for a whole hour (a college professor - I spent 11 years in college and never got a degree!!!!! Couldn't focus...I did learn a lot though!!!)

I know this is an apnea forum not an ADHD forum, but I think my xPAP has helped my other conditions a lot. Now I'm off to deal with my brain function. I believe that the xPAP has helped me accept the reality of some of those conditions. I'm not as tired and run down as I used to be....so I can actually work on other things......My coping mechanisms are no longer adequate!

Thanks for listening....
cheers
goose

[Slinky]

Dr Dean O'Dell, has said that he is ADHD and it has never been treated. He's certainly made quite a success of himself.

[goose]

yeah Dean Edell is one of my "heros".....He'll take on any medical subject....I've been listening to him for many many years.

There are lot of very successful ADHD sufferers.
I had a very successful career for 35 years in IT -- everything from teletype repair to a systems programmer, network engineer, project manager, financial analyst and capital planner. I even managed a department of network planners/architects for a time......Yellow sticky pads were a life saver for me. I always referred to them as "my brains"......my office was covered with them....
In all of that, I know I could have done much better at all of them if I'd been able to focus. I was always known as the absent minded professor, the scatter brain -- the one that was able to do 15 things at the same time (because I had to).....good?? Bad??

I'm at a place in life where my coping mechanisms are failing me. I can't hide from the lack of concentration and focus any longer, so it's time to deal with it!!!

cheers
goose

[phyl]

Hello to all adhd/xpap folks....golly, that's a lot of letters, huh?
I was diagnosed with adhd at age 50. I had a successful career teaching, my marriage/social life was successful, and I was raising a 9 year old and a 14 yr. old. My 9 year old daughter was truly Jeckyll/Hyde. I mean you cannot believe the difference it made in her personality...
u n b e l i e v a b l e. And as I visited the psychiatrist with her, it became evident that I had been adhd all of my life and had compensated wonderfully. However, by age 50, having had my children a little late in life, and having some marital issues, I found that my compensation skills had just been used up. The psychiatrist agree, wholehardily[a word?].

It has been 10 years and my daughter has learned to be proud of being adhd. She says the world would be such a boring and non-creative place without adhders. She definetly travels to the beat of a different drummer. She currently in school working on a degree in film. She has traveled extensvely, usually unaccompanied and is a wonderful person to be with. She still can be very edgy and unfocused, but as an adult, she recognizes this and adjusts her medication accordingly. For the first 5 or 6 years, the adderall made a huge difference in my life. It was as though I had been living life with a dimmer switch that was dimmed about 30%. With the adderall and psychiatric counseling, suddenly, everything was brighter. It was like a miracle.

Of course, now I am 60 and for the past 4 years or so, I just seem to have no energy much of the time. Thus, I had all of the blood work, and heart checks and thyroid and on and on, until finally my doc suggested the Stanford Sleep Clinic. So here I am, a month into using my gear.

I feel somewhat better, but still not with the energy that I believe I should have. My adderall does not typically keep me awake, but my isssue is being a nightowl. My husband goes to bed aroun 11 and I stay up until 1 or 2. He wakes up for work around 7, and that awakens me. Before cpap, it was no issue. I would eat a light breakfast and usually go back to bed for a couple of hours. Now, I want to sleep for 7 ror 8 hours in one stretch. But my body clock isn't cooperating !

It is wonderful to have folks like you all to share the cpap jouney. Thank you for being here. I laughed at myself last night---I found myself 'saving' almost every page of the forum to my favorites, lol.

Happy sleeping to all,
Phyl