Brand new newbie, rough first night....

[sleepyJen]

Hi everyone - I've spent a lot of time reading here, but thought I should say hi - my name is Jen, I'm 43 (well, about to hit 44) and I was diagnosed with OSA back in July....since then it has been a long road....

Short story - I have always snored. My brothers made a recording of me snoring when I was 7. (nice, huh?) I am one of 7 kids and we all have tonsils 3 x's the size they should be. Only two have had them removed (when they choked). I've always been a terrible sleeper, prone to headaches and obsessed with my pillow - I swore pillows caused my headaches so I wouldn't give up my pillow for about 15 + years! (the Dr does not think having them removed now would completely cure my OSA, so she doesn't feel I should go through the pain if it won't get me off the CPAP)

Fast forward a few years ago - I was feeling terrible. But, I was also a smoker. So, every time something went wrong, I blamed being a smoker. Meanwhile when I would go to the Dr, my BP was always in the high 140's/high 90's (sometimes higher). Every Dr would say "has anyone told you that you have high blood pressure?" And I would say "no, but every Dr asks me that" and they would so "ok" and move on. Two years ago things got really bad - I was always about 30 to 40 lbs over weight, but suddenly I put on 30 lbs in a year; I have spent the past 10 to 15 years being diagnosed with tension headaches, but I actually ended up in ER twice because they were so bad, I felt like I was getting electrical jolts down my head. I was exhausted, had no concentration, no energy and my cognitive function was off - I was scared to drive as my reaction time was just not there. There were times I felt like had ants in my head. It has been like being someone completely different these past few years and not fun.

The good news is it got me to quit smoking 10+ months ago, thinking that would be the cure all. I do have neck issues due to an eye condition, so I was sent to a neurologist who sent me for PT, thinking all that was causing the headaches. I thought I would feel great though - and I felt worse. So, I took a friends advice, went to see her Dr., told her the whole long story and she said "you are going for a sleep study - you have sleep apnea" I was floored - again, I've always snored, how could I have sleep apnea? (which now I know I've probably had for a very long time)

And she was right, I have OSA - I don't really get all the numbers so I'll do my best giving info - my AHI is 51. My lowest Sat02 was 64% (which I found terrifying). I don't understand this but it says I slept for 323 minutes and I had 26 OA's, 1 CA, 0 mixed and 248 hypoapneas with an AHI of 51.1 and RDI including RERA's (?) of 51.6. I spent 2 hours and 34 minutes below 90%.

So, then things got complicated with insurance and other issues and I didn't end up going for the titration study (partly dragging my feet too) until November. Then more insurance issues and I finally got my CPAP Sunday (along with my cousin, who ended up going to see the same Dr at my urging and ended up with AHI of 151!! She had a split study the night of my titration study and we both got our CPAP's on Sunday.

During the titration study they gave me a swift fx mask - It took me over 3 hours to fall asleep. I wasn't miserably uncomfortable but I couldn't get used to the air coming out of the vent. The guy running the test was not happy with me that it took so long to fall asleep. I kept getting jolted awake (almost like heart palps) and then next day, I was all jittery and anxious. The Dr. said it was an adrenaline rush from actually getting some sleep. (?)

The woman who set us up said we'd like the Wisp masks better - it was not a good first night. The second I put it on, I felt like I was gasping for air (my pressure is 9 and it ramps starting at 4. Humidity is set at 3 and the C-Flex is at 2) I had to take it off and try again, and instantly my nose was congested - I had to take long exaggerated (at least it felt like it) inhales and exhales - it was just weird. I just could not breathe normally (which I didn't expect). I ended up ripping it off at 1 am in a fit of tears (which did not help the congestion!), blew my nose 100 times, had a cup of decaf tea and tried again. I did fall asleep at some point, but my husband said I ripped it all off at 4:30 am. He didn't wake me as he felt I needed some sleep. Definitely no adrenaline rush this time.

So, I'm more exhausted than normal, I've had the worst headache all day, but all I can do is try again. I did hang the hose which helped with the vent a little (I hate feeling the air). I did buy some ocean saline and some breathe right strips to see if that helps with the nose congestion. I need this to work - I hate the idea of, but if it means I'm healthier then I'll do what it takes.

I know it's all a learning process and I know it takes time - but I'm so ready for some sleep, even a few hours. I dread going to bed though - and I hate that.

So, I look forward to getting to know you all and learning as much as possible!

Thanks

[GreyEagle1]

I know it is a difficult journey, but is worth the effort in the end. I switched from a mask to nasal pillows the first week, and have been using them for about two years. Several things changed then... air leaks were a thing of the past, the tossing and turning stopped at night, and the exhaust air exited the front so well it became a non-issue. The headgear I am using is ResMed Swift FX. I grew up with asthma, so shortness of breath is a big issue I am fully aware of. I do think a lot of getting use to the CPAP is mind over matter the first seconds of use each night, and falling into a breathing pattern quickly helps. The deep breaths you take are a great way to settle into the rhythm of the machine. Good Luck!

[cpierc01]

Sorry you are having a hard time but it will get better. I started on bipap in June 2013 and it has really made a difference but it takes time to get used to it. I use the nasal pillows and so far I am having good luck with them. You do have to get used to the pillows inflating but most nights now if does not bother me. I was just like you dreading going to bed. But, now as they say my bipap is my best friend. Your body has to learn to trust it. A lot of good information and people on this forum. I could not get through it without them. Good Luck

[sleepyJen]

Thanks to both of you!

I do have the Swift FX Nasal pillow mask as well (they let me keep it after the titration study) so I was surprised when the DME gave us the Wisp. I've been debating all day which one I should try tonight When I did the study, the mask didn't really bother me much, though I did wake up once to find my lips flapping (that was weird!). I definitely noticed I had more trouble breathing with the wisp than with the swift fx but I wasn't sure if one night was a fair judge. The DME kept stressing that the wisp fit a female better (?)

And I do, too, believe it's mind over matter - so I am working hard on getting in the right frame of mind

[Pugsy]

Try both masks while you are awake (like when watching TV) just to get the "feel" for them. Don't worry about sleeping...just use them to see which one feels better to you and go from there.

Don't use the ramp feature...it is going to lower the starting pressure and very possibly make any suffocation feelings worse.

[Julie]

And turn down or off the humidifier - it congests many people and you don't necessarily 'need' it.

[cpierc01]

I am a female and tried the wisp but felt very claustrophobic and no air. I do not use the ramp as Pugsy said that makes the air flow to low for me. Do try wearing both while watching tv or something it will help you get use to the mask.

[icipher]

I am glad you came to this forum. I read your entire post and it is clear you're making one of the best decisions of your life by going on CPAP. This decision, however, will only be a good one if you stay on it.

Let me tell you.... The first two weeks of my treatment were horrible. The first 3 or so days were so bad and I was so depressed and scared I can't even tell you how bad it was.

Fast forward to now, 3 months later and at 30 years old, I am handling therapy MUCH better and it has become a routine that I have adapted to for the most part.

Do yourself and those you love a favor, and stick to it. Your life depends on it, as was evidenced by your post.

Chris

[tam22670]

Hi Jen,

I am new too, and we seem to have a lot in common. What caught my eye was when you mentioned the "electrical jolt"! I have back & neck issues, and I get this type of spasm that runs from my tail bone to the top of my head like an electrical current! It is SO painful, and no one ever has any idea what I am talking about when I try to describe it. I have several doctors I work with including PCP, Pulmonologist, and Neurologist and they haven't had any answers. I'm wondering if you have any more information???

Anyway, back to the topic at hand! I started CPAP a month ago and some nights are better than others. The first couple of weeks I was even more tired and depressed than I'd been before I started treatment. I too am anxious to get some good sleep! I find that every little thing wakes me up, including minor leaks. I started off with ramp setting at 5, but have since increased it to 6.5 because I felt like I wasn't getting enough air. My prescribed pressure is 15, which I'm guessing is part of my "leak" problem. So, you can adjust that beginning # to get more air, or just not use the ramp like some others have suggested.

Oh, and I can only take the humidity at 2 at most. Otherwise, I get stuffy & start to feel asthma symptoms coming on. With all the allergies I have (year round), I knew I was going to run into some problems with stuffiness so I started out on a full face mask, which I found very uncomfortable. I started back on my flonase, in addition to my regular allergy/asthma meds, to shrink nasal swelling, and started using saline spray all day long & things are working out pretty well.

I hope you have a better night tonight! In fact, I hope I do too LOL! I haven't slept well the past two nights. between insomnia & leaks & who knows what else.

Sweet Dreams!

[sleepyJen]

Hi Jen,

I am new too, and we seem to have a lot in common. What caught my eye was when you mentioned the "electrical jolt"! I have back & neck issues, and I get this type of spasm that runs from my tail bone to the top of my head like an electrical current! It is SO painful, and no one ever has any idea what I am talking about when I try to describe it. I have several doctors I work with including PCP, Pulmonologist, and Neurologist and they haven't had any answers. I'm wondering if you have any more information???


Sweet Dreams!

Hi! I'm sorry, I don't - they chalked it up to a migraine. I'm now on a low dose of valium, taken as needed and that helps a lot. I will say that my "jolt" was definitely not as severe as what you experience as it didn't travel that far. I hope you find some answers.

Last night was much better - though, the 3 1/2 hours of sleep the night before may have helped!! Per the advice here, I tried both masks on while watching TV - with the Wisp, the second I put it on, I felt like I was suffocating. Something about it makes me feel like I can't breathe through my nose as all. With the Swift FX, I could breathe normally through my nose - so, I went with the FX last night and did much better. I woke up often to adjust it, though I'm not sure if it was leaking or if it was just me getting annoyed by it. It did irritate my left nostril from the second I put it on, but it wasn't terrible and I don't have any sores today. I know at one point something happened and I sat up and my husband asked me if I was ok, but I don't really remember now what caused that. I do know that if I did wake up, I fell back asleep. I'm exhausted this morning (per usual!) but I don't feel foggy and I don't have a headache - total win-win's in my book! The worst part for me is the vent - that is the one thing that annoys me the most.

I change the C-Flex to 3 to see if I had an easier time of it (I don't know if that was a good idea or not) and though I didn't have the congestion issues last night like I had the previous night, I did wake up congested, so I will turn the humidifier down tonight. According to the machine, I've had 0% large leaks and my AHI last night was 0.7.

Thanks again for all the help and advice - this place is amazing for a newbie to this!!

[Pugsy]

I didn't want to jinx you with the Wisp but I couldn't use it either due to it causing a lot of nasal congestion for me....so I didn't mention that part of it.
It's the ever so slight pressure of the mask on the nose that causes the congestion for some people.

[bavinck]

Try and systematically adjust the humidity setting over the course of 5 or 6 nights. Some people find low humidity to cause congestion (I do), and others don't like high. Giving each setting a whole night will help you evaluate. My DME told me to dry a lower setting as I had a cold when I started CPAP, that made my congestion much worse. Over a week, I started and 1, and each night tried a consecutive higher humidity. Also, after a month I switch from a pr1 to a resmed autoset, and I am not sure why but the autoset seems to give me much less congestion issues. On the autoset I can specify temp and humidity separately, and through playing with the settings for a couple weeks I have found settings that allow me to wake up less congested than when I went to sleep. What machine do you have?

[dir1944]

hello jen
i'm new too. i'm in my second week of using the cpap. my first night was horrible and i was ready to return the machine the next day. but someone told me that the first night will be the worst night and it just keeps getting better. and it's true. each night is better. i still wake up during the night one time. i use the newest nasal pillows and i'm satisfied with them but i want to try a nasal mask just to have a basis of comparison. i went to see my doctor yesterday and i tried on several masks and we decided to go with the fisher & paykel eson mask. i'll probably be getting it in about 10 days or so. however, please hang in there. i couldn't have done this without the support of so many wonderful people on this forum. i didn't think i was doing very good but after seeing my doctor yesterday, he told me he could see i was using the machine every night and my numbers were good. the numbers don't mean much to me. i'd really like to sleep a whole night and even my doctor couldn't guarantee me that but he said everyone is different. some people move along quicker than others. i'm struggling too. the machine is working fine and so are the nasal pillows. he did some adjustments to my machine yesterday. everytime i feel like taking the mask off, i tell myself that if i leave it on i will be accomplishing something. if i take it off, i'll never know what i can accomplish. hang in there and it will get better.

[neallo]

Two things:

1) I read somewhere, maybe here or some other place. It takes on average 6 months to get used to and start getting the help from cpap. Now I hope you understand that this is an average, which means some people take longer others shorter, so keep it up and in the end life will be wonderful again, I hope.

2) check out

Code: Select all

www.cpaphelpdesk.com

It might help with some of you issues

[tam22670]

Oh Jen, I'm glad to hear you had a better night last night! Also happy you have the relief you need with the valium. I just thought it was worth asking, as you are the first person I've come across who referred to the feeling of electricity causing pain. I actually have been diagnosed with migraines as well, and my controller meds aren't working as well as they once did. I am hoping the frequent headaches will dissipate with the cpap.

Take care & I look forward to getting to know you, and the rest of the community here!