My myriad of CPAP problems / Problems in general.

[Cait]

Please serious posts only. >___> Because when you say things that make me feel worse, it does not help.

Me: 23 year old girl. Never had any health problems before this outside of bladder leakage and asthma when i was around 3, which went away. I've never done drugs of any sort. I've never had alcohol. I've never smoked. I've never had sex. I've been a nervous wreck / unreasonably shy my whole life though.

Top grades in school and college, employee of the month, leader of the top guild on my serious game. I'm not a bad person, I'm in pain. >_>

Setup: I believe the S9 With Nasal Pillows


Pressure is at 9. I do use the ramp. Having water in the humidifier doesn't seem to affect anything for me.

All Symptoms not related to cpap (As posted on another website) Scroll down to the black text for more CPAP stuff:
-Female
-22
-Healthy otherwise, never been sick besides a cold once a year or so.
-Blood tests turned out good
-Xrays and MRIs are good
-EKGs are good
-PFT is good
I have the results scanned online... I can link you if youd like


Major Health History:
-Asthma as a young child. It went away by the time i was 8.
-Strange skin rash at a child, it went away before I Can remember.
-Broke my leg in 4th grade rollerskating
-Spilled boiling water on my stomache in 7th grade
-My right big toe on my foot is numb on the tip and I cant feel it. I assume some kind of nerve damage. (Did I accidentally kick something too hard? I run into things a lot, lol)
-Irregular periods, usually very heavy. (always been that way)
-I am very anxious about everything and very shy around all people. (Again, always been that way)
-This chest pain thing (which is what this message is about)

What is wrong:

-Chest pains
-Irregular
-On left side or right side
-Not triggered by anything (tried changing diet as well)
-Not triggered by vigorous exercise
-Sometimes stabbing, sometimes 1 stab, sometimes pressure. (Doesn't coincide with heartbeats)
-The closest I've come to reproducing a chest pain, was when I was carrying a ridiculously heavy ream of paper on my chest.
I'm just going to explain this in detail, because I don't know how else to xD



November 9th, 2010:
My birthday, of all days. I'm on my period (which is irregular to start with), which is particularly heavy... So I go to Prompt Care 1. They prescribe me with Naproxen. She swore it would make my period less heavy. Then she had a follow up appointment to check out my girly bits.

I took the Naproxin, and to my astonishment, it seemed to slow it down to a halt. But now I'm upset over the girly bits appointment. Noone has ever seen my girly bits but ME... and It's nerve wracking. I'm up all night upset and worried about it.... so I decide to cancel it and be on my way. I get to sleep around 9am.


November 10th, 2010:

I wake up around 12 noon and I'm still really tired so i roll over and try to fall back asleep. But I have a sharp pain in my chest on the left side, directly north of my nipple and across from my armpit. This has happened before, usually a pain then its gone. It's happened maybe 2-3 times a year since 2008. This time it was different. It was a stabbing pain that seemed to be rhythmic. At this point I'm really scared. It's never been like this before. So I have a panic attack. I got all numb, cold, dizzy, and scared. I'd never had a panic attack before, So I thought I was having a heart attack. I naturally, get all upset. I call my dad at work, and talk desperately to my friend online. I tried breathing normally and everything to calm down, but It didn't really work. I had many chest pains that day. That day was the worst day for chest pains.

When my dad got home, he took me to prompt care, because maybe I was having a reaction to the Naproxin. She said I wasn't, and that she didn't know what was wrong, but my vitals seemed good, and I should go to the ER. I didn't have proper insurance. So we went home. My boyfriend came over half way through his shift to sit with me. I had many chest pains that day, random stabbing. I was very tense, I cried throughout the whole day. He stayed up all night to make sure I stayed breathing. (He really is wonderful...)

The days that followed:

I took a few days off from work... my boyfriend came over after work all of those days to sit with me. I don't really remember much what happened, it's a blurr of crying, chest pains, and being scared. A few weeks later, the chest pains stopped when I got an ear infection. (It was my first ear infection as well) I felt like my life was coming apart. I NEVER get sick. Ever.... I post frantically on the internet trying to find out what is wrong with me. I even wait over an hour for a "Free trial talk to a doctor online" thing. (He didn't know either, and was cut off after 5 minutes anyway)


January 2011:

Obamas healthcare thing kicked in and i got proper insurance again from my dad. I make appointments. Like mad. The first doctor does tests, Pulmonary Function Test, Chest Xrays, MRIs, EKGs, tests out the wazoo. Nothing is wrong. She doesn't schedule a followup appointment, so I figure that was her message saying "try another doctor"

I try another doctor. He says I have high blood pressure... Which is odd... because I've always had slightly low blood pressure. He puts me on Bystolic, which SEEMED to help. But after a week or so, It didn't, and the chest pains came back worse than ever. He also put me on Cymbalta to see if it helped my anxiety. (It didnt, it just made me feel really zombied with no middle emotions.)

Turns out his doctors called in the wrong prescription, they thought it was another prescription (or something) so I figure, ok, I am done with you if you don't even know what prescription you're calling in for me...

We went back and forth with this for a long time. With this, my chest pains changed. It was no longer a rhythmic stabbing, sometimes it was one stab. Sometimes it would be in the same spot, sometimes it would be below my left breast. Sometimes it would be in my right side, sometimes on my right breast. Other times it wouldn't be a stab at all. It would just feel like someone was constantly holding their hand on my left armpit. Constant pressure.

June 2011:

Since he thought it was a heart problem (he suspected leaky heart valve disease) I go to a cardiologist. The cardiologist said there's nothing wrong with my heart at all, and that I should find a better doctor. Ok.

this is where it gets kinda fuzzy with the dates for me...

June -> July 2011:

The chest pains stop by themselves. I'm taking no meds at all..

Mid August 2011:

The chest pains return, but they are not as severe. Its just a single stab, or just a little bit of brief pressure. I set up an appointment with a gynocolgist to check out the girly bits since i feel like thats something i can do now. I go in, everything is fine. She says "you have heavy periods cuz all the periods youre supposed to have build up till they get so big they come out. I did some research and I found no info on the net supporting this statement. She put me on a med to force a period. It worked, I had one.

She suggested a sleep apnea test. I took it. They said I am borderline. They recommended another Dr. in another town.

September 2011:

I try a chiropractor to see if maybe it is something muscular related. (i dont know who to go to for muscle things.) He said there was nothin wrong with my bones, but i could come back for 12 more treatments to help my 'back pain'. (I have none) (He apparently didnt care about my muscles?)

Sooo I try the "sleep apnea dr recommended dr. in another town. "She says it may be anxiety. (well, yea i knew that, but is it causing my chest pain.) She thinks it could be costochondritous, and gives me naproxin for 'chest muscle swelling', and another medicine for the anxiety. (I dont remember what it was called.) both of them didn't work. I was getting really upset at this point at work, and I ended up not being able to keep it together (I work with customers) and a few days I was in the back crying more than I was working. They gave me FMLA papers, because I couldn't handle it. I just freaked out every time I had a chest pain...


I went into Prompt Care #2 (a different one) and they wouldn't fill out my papers, and prescribed me with Xanax. I took it, and 2 hours later, I felt really sleepy (I didnt sleep much the night before) and I laid down and had another panic attack. Similar to the last one. My boyfriend drove me to the hospital. By the time we got there, I felt a bit better. I called Prompt care #2 and asked if maybe I was having a reaction to the xanax. They said come in to prompt care. I went in, and was freaking out, i felt dizzy and i had to pace, I couldn't sit. I had to talk loud for some reason, it was weird.

They checked me out and said there was no reaction, and that if i had a reaction, I would have had a swollen tongue and etc. She said that I should get checked into the hospital for a 3 day psych analysis...

October 2011:

I scheduled an appointment with a previous doctor (the one who said my blood pressure was high). Because they said I had to have an appointment to get FMLA papers signed. I call U of M and Mayo Clinic, asking to see if I could get into there. It's the end of the year and I need to get this figured out while my insurance is still good... They say I need to get a referral.

I went back in to newest dr. (the anxiety one) and she wouldn't fill out my papers. Not my FMLA, not the referral... and told me that she thought maybe I had fibromyalgia. Ok, i thought, My mom had that too. Maybe its a genetic thing. She prescribed me with Lyrica, and told me it was a $4 prescription. It wasnt. It was like 350$. I called her and asked what the heck was going on. She called in a new prescription, supposedly a generic, and scheduled me for an occupational therapist.

I took the new "generic" they called in for me, and it turns out it was another antidepressent, not a generic for Lyrica. 2 hours later, I had another panic attack. This time, I was aware of what they feel like, and that even though I feel like I'm going to die, I'm really not. So I sat on the couch, cried, felt numb and cold like normal, and had my boyfriend talk to me to keep me calm. (He really is the best *tear*) He stayed up all night to make sure i was okay. (I told him not to because he had to work early the next morning) -_- (sometimes stubborn xD)

The Occupational therpaist was a few days later. I went there. She said "Why did your doctor send you to me? You dont have fibromyalgia. Fibromyalgia is CONSTANT 24/7 pain that is symmetrical on both sides." My pain is neither constant, and not on both sides at the same time. Only one or the other. She said "You need to be your own advocate. The next time you see a doctor, tell them you need your FMLA papers signed, and you need your referall. Dont let them sidetrack you."


October 26th, 2011:

Soooo My next appointment (october 26th) I tell him I need FMLA papers signed and a referral to Mayo Clinicand U of M. He flips out on me.


He said, and i quote, "I am pissed off that you went and saw other doctors without my referral. You can find another doctor, I won't be your scapegoat anymore. If the tests we've done so far on your heart, lungs, or bones have found nothing, there is nothing wrong with you, you should be happy. You should be happy to know there's nothing wrong with you. Even though you still hurt, there's nothing wrong, so WHY DO YOU GET UPSET when there's nothing wrong?"

uh.. maybe because it STILL HURTS? -_-

Because I sought out a 2nd opinion, that pisses him off? He wants to create a healthcare monopoly?

Because that my chest pains SCARE me and cause me to get upset? I should be happy that they cant figure out whats wrong, even though there something IS wrong... If nothing was wrong, I wouldn't get chest pains -_________________-

I get upset, naturally.

And here I am. I apparently can't pay a doctor to get help, so... can ANYONE help me? Does anyone have any idea what could be wrong? Does anyone know a doctor in the tri-state area of michigan, ohio, indiana that isn't COLD and HURTFULL... one that really -genuinely- wants to help me? One that doesn't see me as a walking 100$ bill?

Or a way into U of M or Mayo Clinic without a referral?

Or any ideas of what this could be? What kind of doctor could I go to to get some different testing done? Like what kind of doctor could check muscles? Or Nerves?

I reallly need this figured out, I love my job, I love my life, and I don't want to have to quit because I get upset every so often...



Edit Feb 2011:

I went to a highly recommended doctor that was hard to get into. I scheduled an appt in October, and they didnt get it in till Jan. He was the one who said go for the sleep study. I went in for the sleep study. I had to sleep on my back, and i had a nervous breakdown.. started crying.. I havent slept alone for years. I was up most of the night till around 9am I slept for about 3-4 hours.

They said I needed another one. So i scheduled another one. This time they let my friend stay with me till I "fell asleep" but nervous break down again.. and... he started to fall asleep before I did, so he left.. and again, I laid there till around 9 am.. slept for maybe 2-3 hours this time.. Made an appt with my doctor to discuss the results. He said i needed a cpap because of the results. He says that my chest pains may be caused by 'lack of quality sleep' since i will sleep for 10-12 hours straight and still be tired. I am extatic.. maybe someone figured out whats wrong with me... finally.

and here i am, back to square one, because I cant sleep with it on...

As you can see, I've been through a lot, and flipped out because my 21/30 days doesn't match their 21/30 days...... Because the programmers implimented stupid rounding without telling anyone



CPAP Problems:
1.) Air blows into my eyes. When I cover up the vent with fabric, it stops, but apparently this will kill me.

2.) The air that blows is cold. I'm a cold person in general. Cold + Cold = Miserable.

3.) My nose gets wet... so wet that it drops onto my lip.. and its cold. Wet + Cold + Cold = Very Miserable

4.) I Itch.. a lot. Getting the nasal pillows instead of the full mask helped a lot, but it's still itchy... even after washing it and my face. Not just that area is itchy, my whole body is itchy all the time.

5.) The vent is noisy. Air blows on my pillow and is noisy. It blows back into my face and it's cold, and it just sucks. I can't sleep on my back, It has to be on my stomache, or sometimes my side.

6.) When no fan is on, and i lay on my back, it makes a wheezing noise throughout the tube. Also annoying, and I can't sleep with it.

7.) I just cant sleep. Even if I wipe my nose every half hour, and don't have the cold air smacking me in the face, I will lay there and lay there and lay there all night until the next day. My DR Recently prescribed me Ambien and with it, I can sleep for about 4 hours before I wake up, and when I wake up, I'm all pissy because I'm tired and can't deal with the cold air in my eyes, and rip it off. Also I don't like taking sleeping medicine because -I dont want to die- ( http://www.latimes.com/health/boostersh ... 2260.story )

8.) The lack of positive support makes me very pessimistic about this whole thing. "When you're feeling your worst, your best friends won't leave you hanging to stay down, they will still stick by you and help bring you up." I know you guys aren't my friends, per say, but as on a help health related forum, I would expect that you would not bring someone further down that is clearly already down >_>

9.) The Drs don't even know if Sleep apenea is my problem (Chest pains) so this is an awful big thing to "try" to figure out what is wrong with me, where everyday my chest pains are still there and dont go away, and they make me so irritable and mean. Being in pain does that to a person.

10.) I Dont have problems sleeping without the CPAP machine. I sleep fine.. I rarely wake up, and it's never "Gasping for breath". It's true I'm tired all the time, but I will sleep for 12 hours straight just fine.


The only POSITIVE thing I've gotten from the forums so far is to make a cpap hose cover.. might help with the hose being cold.. maybe will warm the air up a little. Also the idea to put an extra air filter over the vent might be worth checking out too?

The only positive thing i've gotten from my cpap machine so far is: not much. When I have been able to sleep with it on, I feel no better. (and NO I dont expect it to work overnight, I am just hoping that I will be able to someday sleep with it on all night WITHOUT having to tranquilize myself) This whole thing is just stressing me out, and If I cant get this to work, it's just more trouble than It might be worth.... Especially if Sleep Apnea is not my problem.

Here's a detailed data sample:

Sleeping:
http://sadpanda.us/images/861491-SZJY9YY.png
http://sadpanda.us/images/861493-L91TJK4.png
http://sadpanda.us/images/861494-ZSM5BW3.png

Awake:
http://sadpanda.us/images/861497-E16HW18.png
http://sadpanda.us/images/861499-25EXFKH.png
http://sadpanda.us/images/861500-VR0V15V.png


If theres any other info you need, let me know..

[xenablue]

Cait,

I've read your posts on the other threads, and recognise you are having major issues.

This post is very long and extremely detailed - too much to wade through and try to get a sense of what your actual problems are.

Now that we have your life/health history, may I suggest that you ask one question at a time. This way, people can help you deal with CPAP one step at a time.

I would suggest you begin with going to the User Control Panel and filling in the details of your machine and mask, so that anyone helping you has that in your signature to refer to.

Then, ask your first question - start with the most urgent one. Keep your questions brief and on the topic so we can really understand what your issues are.

FYI - I use the exact same machine and mask as you do (with a couple of other masks I swap out with). There have been a number of great ideas, suggestions and advice from the good people here on ways to help me manage things like - rainout (water in the mask, up your nose etc.), hose management, mask slippping on my hair, nasal pillow sizes. All these things are manageable and have helped me be able to sleep all night with my mask on and for the most part having a good night's sleep - every night.

You are very young to be dealing with this, and I'm sorry that you are - however NOT dealing with this is going to make you sicker, madder and definitely things a lot worse than that.


Hang in there.
xena

[sapphirerose]

I recommend that you see an endocrinologist about the menstrual issues. Have them check for Polycystic Ovarian Syndrome. Despite what the web says, you don't have to be fat to have it. It can also cause mood swings from the strange hormonal levels. If you do, check out the SoulCysters message board for support.

Also, find out if your sleep study shows Alpha wave intrusion. My co-worker who has Fibromyalgia has said that the disordered sleep associated with it shows up as alpha wave intrusion. That and responses to certain pressure points are much more diagnostic than symmetrical pain.

Now to the CPAP issues, I had issues with my barrel on my Swift FX building up moisture and I bought the barrel cozy from Pad-A-Cheek. Check them out, they are great.

The air coming out of the vent doesn't bother me so much. You don't want to cover it. I remember the first few nights being irritated when I side slept about the air blowing on my arm. Then I bought a CPAPMax Pillow and realized that I had started keeping my arm under the covers.

I haven't been on CPAP that long, so I am still fumbling a bit myself. But the folks on these boards can help. Just distill it down to one primary problem at a time.

You are too young to be so miserable, but I understand the feeling of having so many problems so young. I developed adult onset asthma in my teens, and I was diagnosed with PCOS, Metabolic Syndrome, and Non-alchoholic Steatohepatitis when I was in my early to middle 20s. In fact, I was supposed to have died about 3 years ago according to the liver specialist, who I must have despised enough to decide to get healthy and prove him wrong.

The OSA came after the TMJD treatment at 35 (which I still am), but I am determined to make all of my treatments work, so that I can lead a healthy and active life and you can too. Don't give up and don't despair.

Once you get it working, CPAP can give you the sleep that you need to have the energy to battle everything else.

[sapphirerose]

Sorry, I didn't notice that the air was blowing into your eyes. Try an eye mask or eye shield. With the Swift FX not covering the nose, you should be able to pick one up for around $1 out of the bins at Target. I wear one because we have a Skylight in our bedroom that bothers me sometimes (lightning storms).

[Uncle_Bob]

CPAP Problems:
1.) Air blows into my eyes. When I cover up the vent with fabric, it stops, but apparently this will kill me.

Some people use a band aid to redirect the air, using the gauze part over the vent so it won't stick and block it

2.) The air that blows is cold. I'm a cold person in general. Cold + Cold = Miserable.

Some like it warm. They do sell heated hoses or you can come up with your own. You said you have a hose cover. All you need is a repti cable and run it between the hose cover and the hose. It gets nice and warm but not too hot to melt the hose.

http://www.amazon.com/Zoo-Med-Reptile-C ... B001OVBEEK


3.) My nose gets wet... so wet that it drops onto my lip.. and its cold. Wet + Cold + Cold = Very Miserable

Rainout is a common problem, using the repti cable will help reduce this significantly

8.) The lack of positive support makes me very pessimistic about this whole thing. "When you're feeling your worst, your best friends won't leave you hanging to stay down, they will still stick by you and help bring you up." I know you guys aren't my friends, per say, but as on a help health related forum, I would expect that you would not bring someone further down that is clearly already down >_>

Try and deal with the problems one at a time, you should find some positive support here.
You can find some useful stuff in the cpap wiki, yellow light bulb at the top of the page.
Several people have trouble getting used to CPAP and getting to sleep with the distraction.
I used the pur sleep aromatherapy to help with that and it worked great

http://www.pur-sleep.com/content/?id=6

[ohwhatanight]

Just wanted to also suggest you read RobySue's article about CPAP anxiety. It helped me tremendously in dealing with the stress of this huge lifestyle change and starting to accept it.

http://adventures-in-hosehead-land.blog ... er_19.html

[robysue]

Cait,

I intend to write a lot more later when I get a chance.

But---you've clearly been through the wringer and are currently much worse for the wear. You've got a whole bunch of problems all hitting at the same time and that's tough to deal with---particularly since many docs are only interested in treating the particular part of your body that they specialize in.   And it seems as though you need someone who will not lose site of the fact that underneath all the problems there's a whole person who wants to feel and function better. Such docs are hard to find, alas.

I also sense from your writing that you are someone who tends to be overly sensitive to physical stimuli and probably emotional stimuli as well, and that you often find yourself overwhelmed by what's going on around you that you cannot control. And that's why I'm writing this short note that has nothing to do with CPAP or any of your individual problems. If you are into self-help kinds of things, then I think you ought to find a copy of the book The Highly Sensitive Person by Elaine Aron. The book's basic premise is that those of us who are highly sensitive are NOT abnormal in some way; we simply represent one end of a spectrum of sensitivity to various kinds of stimuli. But many of us wind up feeling as though there is something peculiarly wrong with us even though there is not. And the book is a good read that helps a highly sensitive individual begin to understand their body and senses and learn to live with them and even enjoy what being highly sensitive can mean in a good sense instead of simply feeling overwhelmed so much of the time. She has a quick on-line for folks to take in order to help determine if they meet her criteria for being highly sensitive. The test can be found at http://www.hsperson.com/pages/test.htm

So for now, I'd say that I highly recommend that you first of all start trying to prioritize the health issues and also look into The Highly Sensitive Person.

[rocklin]

Again, imho, one of those with too much going on to be solved by our classic post . . . counter-post model

Check your PM.

[ems]

Cait... are you still taking an antidepressant? If not, when was the last time you took it? What AD were/are you on? If you don't mind sharing this information, I have some thoughts.

[jweeks]

Cait,

What were you diagnosed with after your sleep study? I don't see events or irregular breathing on your charts, even when the pressure is low during your ramp period. If you didn't really sleep during your studies, it is pretty hard for a doctor to make any kind of diagnosis. There are both sleep and breathing disorders that don't respond well to CPAP, and even some that don't show up in the data that CPAP machines measure.

Was this one of those "we don't know what you have, so use this air blowing machine & go away" type of things?

As far as the CPAP issues you list, I had every one of them when I started. What I found is that problem solving is easy when you have a clear head, but it is almost impossible when your brain is sleep deprived for a long period of time.

1) Air in my eyes almost drove me insane. I tried a dozen different masks before I found the Swift LT. It has the exhaust low and it angles down.

2) Water on your nose is awful. I found a number of tricks. First, put your machine below your bed, and bring the hose up behind your pillow. The vertical climb will cause the water to drain back into the machine. Use only distilled water. Keep your room nice and warm, use less covers to adjust your temperature. Make sure the humidifier is warm. Adjust the humidity control, backing it down if you get too much water. Use a heated hose if that is a reasonable option.

3) If you are using a nasal pillow mask, and your skin is itchy, try using some Lanisoh (find it in the baby products isle) on your nose. If that happens with a nasal or full face mask, try using mask liners (you can get them from cpap.com or Amazon).

Please post back. Post every day if you like. There is always someone here to listen, and sometimes even offer advice and help.

-john-