Freaking Out!

[Guest]

Hi Everyone, I am really hoping to find the guidance and support I think I am going to need on the journey ahead of me, and it seems that many have found that here...

I am a 25 year old female who was just diagnosed with OSA today. I have struggled with day time sleepiness for years and am unsure how I made it through University the way that I did. Looking back I remember spending 15+ hours in bed because I never felt rested and could not keep myself awake to read or study. I live with depression and my excessive sleepiness was frequently attributed to that... which I never felt was exactly the problem. After meeting with my doctor today I was a complete mess. I cried in my car, I cried at work, I cried when I got home... I am feeling a mixture of anger, frustration, and concern. My anger and frustration comes from not understanding why no one believed me that 'being tired' was not just something I was making up. I have moved back home with my parents since school (and other living arrangements!) and the amount that I sleep is a daily argument in my house. I am frustrated that although I made it through university with decent marks and am working in a field that I love, I could have learned so much more, enjoyed so much more, and retained so much more had I been diagnosed earlier (or better yet, not have this issue at all!). I love my parents very much and they are very supportive in all aspects of my life, but when I told them tonight about what the doctor had said, it was as if it was all turned around to be my fault. I was told that if I just had a better sleep schedule, if I didn't weight so much, if I just dedicated myself to a life style change, if I didn't 'allow' myself to sleep the way I do, that this 'problem' would not be a 'problem.' I already find it difficult to stay over at friend's houses because of snoring, how will I ever do this with a CPAP? Being recently single, how do I go about bringing this up with my future relationship partners? Perhaps I am being over dramatic, but I am exhausted and worried about falling asleep tonight... any words of encouragement and advice would be greatly appreciated....

[elena88]

Hi Sweetheart,

I'm so sorry you are having such a rough time of it. I know you are upset about all the time you lost feeling so badly, and not knowing why, or
having someone tell you why, and be wrong about it. That is not easy to swallow.. however, there is nothing you can do about it, take some
time to mourn a little bit, then time to move forward. Its very difficult to be told you have OSA, and even worse to be blamed for it.
I do know how you feel because my inlaws are that way. In that family any weakness you have, they will blame you for it, and attack you.
I say when people act that way.. they have been reading "the upside book" way too much.
What you need is a little tenderness, and kindness, and someone to give you some hope.
Im sure your folks care about you and want the best for you, but sometimes when people are faced with a situation they dont understand, it
frightens them on a subconscious level.. its easier to blame someone for their condition, then to think, it could just happen to ANYBODY.. and it can.
OSA can happen if your throat opening is too small, big tonsils, adenoids, slanted palate, jaw set back, a myriad of things.. or a perfect storm of
them.. Sure, weight can make it worse, but that is usually not the only thing going on..
Also your sleep schedule.. well, my dear, its pretty hard to have a wonderful sleep schedule when you are fighing for your life each and every night,
suffocating, and YOU dont even know.. Give yourself some time, a break, some space.. and know that, its much better you found out now, then
twenty years from now. You will have a life again.. It is scarey, its a lot to take in, but you will find your way..
YOu have come to the right place, these people KNOW everything about OSA..
Here is wishing the best to you,
elena

[DreamOn]

First, welcome to the forum! You have come to the right place to learn about sleep apnea and CPAP! There are lots of very helpful people here who can guide you as you adjust to this new way of sleeping. Many of us have felt exactly as you do now. We've overcome our initial fears, worked through any challenges, and have found our way to better health and vitality.

Although your parents are in their own state of denial right now, they will probably come to view this differently as they become educated about sleep apnea, especially as they see you improving. This disorder doesn't discriminate. It can affect thin people as well as overweight people. Children sometimes have it. As your parents see your energy level improving, they will see more of the positives. You will come to accept it too. Many of us weren't diagnosed with sleep apnea until we were much older, and the nightly oxygen deprivation from the apneas did a lot of damage to our bodies and brains over those years. You are very fortunate to have been diagnosed at a young age, as you won't have to suffer the consequences of untreated sleep apnea like many of us have.

When I first started using CPAP six months ago, I found this article to be helpful. It is entitled "Seven Stages of CPAP and What Is Feeling Good?": http://smart-sleep-apnea.blogspot.com/2 ... at-is.html. It describes the emotional journey we go through after learning of our diagnosis. The "CPAP Wiki" (lightbulb at the top of the page) has a lot of good information about sleep apnea. And searching past forum threads can be very enlightening as well.

Don't let all this information overwhelm you, but here are some important tips when starting out. Learn as much as you can about sleep apnea and CPAP equipment/masks. If you want to take an active role in your therapy, learn which machines can provide you with data that you can use to monitor your results and improve the effectiveness of your therapy. Here is a list of full data capable machines, and those that are not: viewtopic.php?p=307168#p307168. Ideally, you will want to get one of the machines typed in blue, and avoid the ones typed in red. Getting a mask that is properly fitted is very important. There are different types to choose from -- nasal pillows (which fit just inside the nares), nasal mask (covers the entire nose), and full face mask (covers nose and mouth). There's also a Hybrid mask, which has both nasal pillows and a cushion that covers the mouth. Masks are a very individual preference. If you find that you breathe through your mouth, you may need a full face or Hybrid mask. If not, then a nasal pillows or nasal mask may suit you best. Whatever style you get, make sure it is fit properly while the machine is running.

I hope that you will register here. It's free. Once registered, be sure to list your mask and machine via the User Control Panel (top left of the screen) when you get your equipment. Knowing the specific equipment you're using can help us to help you more effectively.

Most of all, I hope you'll stick around here and become a part of this community. We discuss all kinds of topics, including how CPAP affects our friendships and intimate relationships. There are other people in their 20s and 30s here. The tips and tricks I have learned here have made my adjustment to CPAP so much easier! The kindness and generosity of the people here are amazing. CPAP has given me back my life. I can think more clearly and have so much more energy. I now sleep well and wake up ready for the new day. I truly feel like a new person. You'll get there too, with persistence and patience! Lean on us for support when you need it. Be sure to ask any questions. We're here for you. We want your therapy to be as successful as possible so you too can lead a full and healthy life!

Best wishes as you begin your journey,

DreamOn

[countman88]

cpap may well be the only long term solution, but give some consideration to trying a mandibular splint (mouthguard)for the sleep overs/relationship issues.
I found mine totally stopped the snoring, but didn't give me as good a sleep outcome as my cpap longterm. I take my mouthguard instead of my cpap for overnight, or a few nights, business trips etc. and find for those short periods I don't notice any difference with tiredness. When I used it exclusively for three months, I felt it wasn't as effective as the cpap, but not a great deal less.
A sleep study after 2 months confirmed it wasn't as effective, but did overcome most of the episodes. You probably won't get too many long termers on this site agreeing with me, as they seem pretty much to consider nothing but cpap should be considered, but at least look into it to possibly assist some of the issues you have raised. Getting into an exercise routine to give you more energy and help lose a bit of excess weight, and the perhaps the mouthguard, may overcome your problem. hope it's that simple, good luck.

kenD
bris

[grannyalien]

I, t00, have struggled with cpap, but got a rather dramatic wake-up call in january of this year. I had been dx'd with obstructive/central sleep apnea for a couple years. It began in 2004, when I started having pneumonias - about once/month for 8 months, then 6 months of nothing, then another bout, then over a year of nothing - felt great, no pneumonias, no oxygen! (I'd been on oygen from 2004 to 2006 24/7). Then, in spring of 2007, the floodgates opened, and I started having to go back on oxygen (just felt bad, went to lung doc, who did a 'hall walk' found my sats in the 80s, so...went back on o2. This also began a merrygoround of hospital stays - 9 in 2008 and 9 in 2009, and 3 in 2010, so far. They were all, with a couple exceptions (this year) pneumonias - I've probably had about 28 pneumonias in the last 5 years. A sleep study in 2006 was good, in 2007 was good, then all of a sudden, my values plunged from 85% of predicted (pretty good) to 20-30% of predicted (bad). Still, I didn't wear my bipap, then in December, I had a fall, and was overmedicated, and went into respiratory distress. In January, I fell again, but this time, I passed out from an infection and dehydration I didn't know I had, and went into respiratory distress enroute to hopital - thank heaven, a nurse friend was with me. At any rate, on both occasions I was placed on bipap to keep me breathing, in deference to intubation, although I understand I came within a squeak of being intubated. This has taught me to wear it, and when I do, I realize how much better I feel, however, I have a problem. I have a snack at night, and sometimes study the bible. I can't wear my glasses with the mask on (ironically, before cataract surgery, which brought my vision from 20/200 to 20/25 without glasses, I used the excuse that I can't watch TV with the bipap on) I need to get into a habit of putting the thing on right AFTER my snack, and to hang with reading - or at least try to figure out a way to jury rig something (I'm going to try to order a backlit magnifier that's about the size of a book to see if that will help). I also inadvertently at times take off my O2 and with the mask on, I won't have that problem. The only thing is...I'll have to put the mask on over my nasal canula, since I only have one o2 source, and if I don't, and have to take the mask off for something in the middle of the night, I'm afraid I might 'lose' the nasal cannula in the bed or something and can't find it immediately. I desat within a few minutes of taking my 02 off - found myself one a.m. with it off, and my sats were in the 60's - a level that would have gotten me intubated if I appeaered in the ER with that level. I also still have problems with something totally over my face, but I cann't use a nose piece - I do too much mouth breathing, which of course, is rather ironic considering I've been on nasal cannula o2 now for 3 years!

[ccm]

Although I'm a good bit older than you, I had an emotional melt-down when I was first diagnosed. I didn't have anyone "blaming" me but I didn't have anyone "supporting" me either - at first. Then I found this forum and someone on here always had the right advice, the right suggestion and the right encouragement at the right time.

As suggested by Dream On , read the Seven Stages of CPAP and browse (as much as you can handle at one time) the "yellow light bulb". The more you know about the therapy, the more "in control" you will feel.

You have come to the right place. Stay with it. Keep us posted. I care about you because someone cared about me!

[echo]

My heart really goes out to you. I too had similar problems and still do (I'm 32 yo). I especially have a screwed up biorythm, and that combined with the sleep apnea meant that:
- I nearly flunked out of university because I could never get out of bed for morning classes
- This would lead to getting depressed, even weirder hours, and even more failing at school
- Gained lots of weight, got more depressed, ate more junk food, got even more into a rut
- Fell behind even more due to lack of sleep, head wasn't clear, and couldn't motivate myself to do many things
- My roommates during uni stopped waking me up because I would throw stuff at them (even my BF was afraid for a long time, before CPAP!)
- My parents had no idea what to do with me, I kept getting lectures from them and my relatives about being more "responsible"
- I also got lots of lectures about losing weight, getting up on time, etc...

It was ALWAYS MY FAULT.

Finally a young guy my age that was a friend of my parents' got diagnosed with OSA. I had a suspicion all along that I just wasn't sleeping normally. Finally went in for a sleep study and my life CHANGED. Now my parents believe me. Now I sleep well.
I recently finished my master's with distinction/honors, and life is getting better.

I still have problems with my sleep schedule, and it is not a lack of discipline (and unfortunately the cpap didn't help with that). So I'm going back to a sleep lab that specializes in Circadian Rhythm Disorders like "Delayed Sleep Phase Syndrome" and I'm getting treated for hypothyroidism. I had to fight with the doctors after starting CPAP, because I was STILL tired and they just kept telling me to "suck it up" basically. Three years later, I'm finally getting treated for the hypothyroid and it's really helping.
So I'm still in an argumentative phase with my family (mostly my boyfriend) that I sleep late not because i WANT to but because I can't force myself to get to bed any earlier... so I'm hoping the DSPS treatment will help for that.

I FELL YOUR PAIN. I was very angry too, for a long time. All that youth, time and energy wasted to something that was completely treatable. All that blame that falls on YOUR shoulders, you're not good enough, you're not trying hard enough.... i KNOW that. It still makes me angry now when I read stories like yours.

BUT.... now after 3 years of CPAP.... IT WILL CHANGE YOUR LIFE. EMBRACE this diagnosis, as it will help you in ways you never imagined. The mask, the setup, yes it takes some time to get used to it, but it will help you. I travel with my CPAP all the time... and believe me my friends love that I have it because now I don't keep them awake from all my snoring. You will be amazed how people react... just educate them (after educating yourself), and people won't be shocked or alarmed by it. You might even have the chance to start a dialogue with OTHER young people who probably have OSA but aren't diagnosed yet. The issue of bringing it up with a partner has been discussed many times before, this is a good recent thread to start reading: Partners & CPAP: Dating, Sex, & Adapting with Your Partner

Think positive. I know it's harder said than done, but now you have a diagnosis in hand, you know what's wrong, and now you can go about fixing it and improving your life. Just be grateful that you are diagnosed at 25, before all the horrible effects of untreated OSA cause you heart and brain problems later in life!

p.s. If your parents still aren't being supportive:
(a) you have ALL the support you could ever need on this forum, and
(b) we can give you TONS of info showing that OSA is not caused by weight gain but probably the other way around, and
(c) we can also help you find other 'supporting' info showing that OSA is not YOUR FAULT (but probably theirs, as it tends to run in families ) and
(d) just in case sleep hygiene IS a problem, there are many tips here on that as well. Improving sleep hygiene will help you sleep better but it won't CURE the sleep apnea.

p.p.s. When do you get your equipment? For most of us, getting a "data capable machine" and access to the software to monitor our sleep has made a big difference in our treatment. Just keep reading on the forum, and for more info go the Yellow Light Bulb "CPAP Wiki".

[kteague]

The emotions you are experiencing are familiar here. Bit by bit, you will sort through them.

It is hurtful when those we care about most misunderstand us. Your parents aren't unusual in their perspective. When someone is on the outside looking in, all they have to go on is their opinions based on their experiences. Depending on the dynamics in your relationships, you may at some point want to tell them how hurt you are that they have assumed the worst instead of the best about you, and that they haven't recognized how very strong and accomplished you are to have done so well in spite of obvious challenges. They will likely defend their "advice", and that's a perfect opportunity to say that this is exactly what you mean, and that you wish they would ask you and seek to learn instead of giving advice that, while pertinent to those without sleep apnea, doesn't factor in your condition. Or you may decide to let it go, and accept it as no parent is perfect. For me, I had more trouble setting it right within myself, because I had berated myself and thought the worst of myself more than anyone else had.

Take things a step at a time. You don't have to have a lifetime of solutions in a day. As far as a dental device for short term use, I think what's unpopular about that on this forum is when it is used without being sure the degree of its effectiveness. In time you can decide if you want to pursue evaluating that option, which in my opinion, is a valid option for some. Glad you found your way here, where you can get support as you move forward to being your personal best. That's what will take the sting from this diagnosis.

[DreamOn]

....

[Froro]

I just want to give you a big hug.

What you are feeling is something we have all experienced from one degree or another. I too had a meltdown with my diagnosis. It's not silly, or vain, it's human. Our own self image is wrapped up in the process it

Something that helped me through it was
1. I want to live to see my kids grow up
2. If my husband doesn't find me attractive because of a machine...well....stuff it. (he did not react in anything but a positive and supportive way...it was me that struggled with it)


Your life will change dramatically once you start to sleep properly. Mine certainly did.

I'm sorry your parents aren't understanding right now but hopefully they will come around. It's not a question of weight. I'm a little heavier than I was pre kids but I'm not overweight either. (okay..yes...I need to lose about 10-15 lbs...I'm working on it). I suspect i've had OSA since I was a young teen. I know I've snored that long and I was a skinny little thing back then.

Ask any questions you want. Don't be embarrassed. There are many supportive people here in this community who want nothing more than to help others starting out or cope with the challenges that come along the way.

Anyhow. Just wanted you to know you will get any support you need here. You found a good home here. Many of us are pretty dedicated to our treatment knowing how it has changed our lives so sometimes collectively we can be harsh when someone comes on and doesn't want to hear "don't give up". I can promise you though if you have problems or issues and you want solutions to them you will find nothing but people willing to help.

[irishpeacock]

I feel you.

I'm 22 and was diagnosed two years ago. I'd been sent to shrinks since freshman year of high school for depression and was given SSRIs and Provigil for years. It wasn't until I crashed my car that someone sent me to a sleep lab. I left Uni after 3 years of work and half a years worth of credits. I've also lived with people who would drag me out of bed and tell me I wasn't normal or get pissed at me for being "reclusive" (or rather asleep) most of the time. I still have trouble explaining to my exhausted and overworked boss that I can't work 6 days a week because I'm too tired to stand up anymore. Everyone thinks you're just being weak or melodramatic.


I wish you luck and hope your treatment works for you. It's not going to be easy - but if you got through uni, you can probably get through anything.

[Kiralynx]

Hi, Guest!

I found this Forum in order to help my brother in law -- and then ended up with a diagnosis of apnea, myself. I cried walking out of the doctor's office, cried in the car. It was just too much. I'd dealt with cancer surgery a bare six months before so having another crisis was more than I was emotionally able to deal with.

Like you, I'm overweight. Like you, I have family members who were and are convinced that if I would just discipline myself I could sleep well, loose weight, not need a special diet for my digestive disorders, and not suffer from hip pain. Like you, I wish I'd been diagnosed years ago.

Getting my bilevel CPAP has been a god-send. The hip pain everyone said was because I was too fat is virtually gone. I sleep deeply, and dream vividly. (Which, to those who know me, this is a Dangerous Thing!)

It will take time to learn to sleep with a CPAP -- you'll have to find the right mask for you -- 90% of the battle, in my opinion, but once you are sleeping adequately, the difference is, well, like night and day.

Take care -- this is a wonderful group of people who will help you learn how to optimize your therapy.

[GradGirl]

WOW! What an amazing group of people you all are! I posted this last night and have since created a user name and began looking further into the links you have shared. As of last night I had only shared my news with my parents and one of my closest friends. I sat up with her last night crying and feeling afraid to fall asleep. The thought of putting myself in a situation where I stop breathing really terrified me, and I was in a mind frame where I finally knew why I was never rested, so I might as well not sleep and get things done that I need to get done haha. After finally calming down and going to bed, I woke up this morning with puffy eyes and a pessimistic attitude. Once I got to work and turned on my computer, I took at look at this forum and to my surprise I already had people who were showing they cared and supported me. I continued to check throughout the day and as more amazing people posted about their experiences and challenges, I started to realize that I might be able to get through this with a positive attitude as well. I still have not made any solid decisions about my 'treatment options' but hearing how much CPAP has changed people's lives I feel like it is something I am openminded enough to look into now.

24 hours after my first post where I felt like 'hope was lost' you have all given me a glimmer of hope that I too will jump over this hurdle.

Thank you so very very very much, and I look forward to the knowledge I will be lucky enough to gain from all of you

[grandmma]

Oh GradGirl, you've had a hard time of it. Thank heavens you reached out for help. {{{hugs}}}

As a lot of previous posters have said, it does take time. You'll begin to feel better and better energy-wise as time passes - and do give it time. You may initially and briefly experience issues with mask or machine, or mouth leaks - if so, please post and ask for more help. These are all transient things, and will be overcome/pass.

I'm so sorry your family does not understand - in time, and when your energy levels change, they may. Don't worry about past losses - you're only 25, you've time to catch up.

I already find it difficult to stay over at friend's houses because of snoring, how will I ever do this with a CPAP?

Won't be a problem. Machines are not large, not difficult to move around - very portable. Most of us would not dream of travelling without it - I use the ironing board in hotels or friend's houses. Stand it upside down by the bed, behind the side table (don't want it landing on you!), and sling the hose over the feet. It is a medical requirement, just like any other - pharmaceuticals, asthma inhalers, whatever.

They are quiet, non-intrusive, and any good friend would not give two hoots. The only issue may be your perception - don't let that restrict you.

[Kiralynx]

24 hours after my first post where I felt like 'hope was lost' you have all given me a glimmer of hope that I too will jump over this hurdle. )

You will! Adapting to CPAP/BiPap takes stubbornness and determination, but with a little help from good friends like the people in this Forum, it's amazing what we can accomplish.

And the benefits! In retrospect, I had some symptoms of apnea -- the hip pain -- back when I was in my 20s. But they hadn't even invented the CPAP then! So of course I, like many others, went undiagnosed.

Once I knew I had a problem, I was kind of freaky about going to sleep, too. Sleep on your side if you can. And set up a small fan, let it blow air across your face while you sleep. It's reassuring, and you know that a solution is forthcoming.