Greetings,
As you all can tell, I am new to this as well. I had my sleep study last nite. The techs said I had over 30 "episodes" in an hour. I have my follow up next week with the Doctor. I was able to try out a CPAP for about 6 hours. I did 3 hour stints at a time. The first time I woke up in a panic and could not claw the mask off my face fast enough. The second time, I slept for about 3 hours. I am not convinced that it was a good sleep. But trying to stay positive. My sleep study was brutal. The staff was great and very concerned and helpful. But it still was brutal.
There is no treatment plan yet, not sure if they are going to pursue the CPAP treatment or not. I had a horrible panic attack with the mask on and it really freaked me out. Have any of you looked into the surgical options? What did you find? What were the recommendations? What were the outcomes. I have looked at a few places, but as usual, thanks to the world wide web, there are 800 different answers for 1 question. So, I turn to you, my fellow sleepless compadres. I am terrified of the masks. I could not get over the feeling. I am sure, reading all of your posts that it gets easier, but, it is still really bothering me.
So, sorry for rambling, I am not sure where else to turn. Thanks to everyone.
Cheers
Misfit
Pep talk
Pep talk
"There is something wrong with my brain"
Misfit,
Don't do the surgery thing, please. Exhaust all other possibilities first, and then, well, just don't do it. Too many horror stories.
Your sleep study was horrid, they all are. Soon you'll have yourself all set up for treatment, and it will work. Don't worry about the mask as yet, there are different kinds, each with advantages. Lots of people are claustrophobic with the mask. But they try other types of masks. But it might also be just the sleep study. That is not a real life environment. All wired up and no place to go! Ha! It's only a test. It's a lot different when you're home comfortably with your treatment.
Ramble all you like. That's what we're here for. It's a tough time when you first get tested and diagnosed. You might feel alone or worried or even depressed, often anxious. You're welcome to express all those things here. We listen. So feel free to write anytime.
Hang in there. Things will get better.
Linda
Don't do the surgery thing, please. Exhaust all other possibilities first, and then, well, just don't do it. Too many horror stories.
Your sleep study was horrid, they all are. Soon you'll have yourself all set up for treatment, and it will work. Don't worry about the mask as yet, there are different kinds, each with advantages. Lots of people are claustrophobic with the mask. But they try other types of masks. But it might also be just the sleep study. That is not a real life environment. All wired up and no place to go! Ha! It's only a test. It's a lot different when you're home comfortably with your treatment.
Ramble all you like. That's what we're here for. It's a tough time when you first get tested and diagnosed. You might feel alone or worried or even depressed, often anxious. You're welcome to express all those things here. We listen. So feel free to write anytime.
Hang in there. Things will get better.
Linda
Another Warning
Another place that you can get tripped us is allowing your DME dealer to dictate your treatment. Do one of two things (or both):
1. Insist on an Auto CPAP.
2. Check out cpap.com and see if it is cheaper or easier for you to buy direct.
All you need is an Rx from a doctor and then you can take the treatment in your own hands and decide what is best for you.
I'd say once a week someone comes through cpaptalk with a surgery horror story and once a month or two someone who is happy with their surgery or at least not harmed comes through. Then again, if it works perfectly, we wouldn't be hearing from them here! However, I wanted to second the warning given by my fellow cpap user.
1. Insist on an Auto CPAP.
2. Check out cpap.com and see if it is cheaper or easier for you to buy direct.
All you need is an Rx from a doctor and then you can take the treatment in your own hands and decide what is best for you.
I'd say once a week someone comes through cpaptalk with a surgery horror story and once a month or two someone who is happy with their surgery or at least not harmed comes through. Then again, if it works perfectly, we wouldn't be hearing from them here! However, I wanted to second the warning given by my fellow cpap user.
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rustynail
Hi Misfit!
Just found this forum myself the start of my Stateside vacation this month (currently in Wichita/Reflection Ridge myself) and have read and gained more knowledge than I could have hoped for . I think you've come to the right place.
I've had my CPAP for about 7 years now and can sing a very long and loud song about waking up with panic attacks It does get better with time and different masks are out there. Don't get too discouraged.
LDuyer seems to always have good advice/information/kind words, if not as witty as the wise words from Liam (he's a HOOT!!), I'd definitely consider her advice seriously.
Just found this forum myself the start of my Stateside vacation this month (currently in Wichita/Reflection Ridge myself) and have read and gained more knowledge than I could have hoped for . I think you've come to the right place.
I've had my CPAP for about 7 years now and can sing a very long and loud song about waking up with panic attacks It does get better with time and different masks are out there. Don't get too discouraged.
LDuyer seems to always have good advice/information/kind words, if not as witty as the wise words from Liam (he's a HOOT!!), I'd definitely consider her advice seriously.
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rustynail
Hi Misfit!
Just found this forum myself the start of my Stateside vacation this month (currently in Wichita/Reflection Ridge myself) and have read and gained more knowledge than I could have hoped for . I think you've come to the right place.
I've had my CPAP for about 7 years now and can sing a very long and loud song about waking up with panic attacks It does get better with time and different masks are out there. Don't get too discouraged.
LDuyer seems to always have good advice/information/kind words, if not as witty as the wise words from Liam (he's a HOOT!!), I'd definitely consider her advice seriously.
Just found this forum myself the start of my Stateside vacation this month (currently in Wichita/Reflection Ridge myself) and have read and gained more knowledge than I could have hoped for . I think you've come to the right place.
I've had my CPAP for about 7 years now and can sing a very long and loud song about waking up with panic attacks It does get better with time and different masks are out there. Don't get too discouraged.
LDuyer seems to always have good advice/information/kind words, if not as witty as the wise words from Liam (he's a HOOT!!), I'd definitely consider her advice seriously.
Rustynail,
I woke up feeling grumpy and read your kind words. That's got to be one of the nicest things anyone's ever said about me. I'm no longer feeling grumpy. You've put a big happy smile on my face You are so kind. Thanks so much.
Liam sure is a hoot, like you say. Noone comes away from reading his stuff without laughing and feeling good inside. (otherwise, there's something wrong with them!)
Thanks for making my day (week, month, year?!). You've got me singing a very long and loud song all the way to work today. No, you're the kind one, not me. I wish you joy, and a wonderful vacation.
Thank you.
Linda
P.S. .... If you want to grin some more, you might click on Liam's name (shown on the forum in blue type). That will take you to his blog website, where you can read even more from that crazy character!
I woke up feeling grumpy and read your kind words. That's got to be one of the nicest things anyone's ever said about me. I'm no longer feeling grumpy. You've put a big happy smile on my face You are so kind. Thanks so much.
Liam sure is a hoot, like you say. Noone comes away from reading his stuff without laughing and feeling good inside. (otherwise, there's something wrong with them!)
Thanks for making my day (week, month, year?!). You've got me singing a very long and loud song all the way to work today. No, you're the kind one, not me. I wish you joy, and a wonderful vacation.
Thank you.
Linda
P.S. .... If you want to grin some more, you might click on Liam's name (shown on the forum in blue type). That will take you to his blog website, where you can read even more from that crazy character!
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littlebaddow
- Posts: 416
- Joined: Wed Dec 08, 2004 12:21 pm
- Location: Essex, England
Hi Misfit and welcome
Spend some time browsing this forum and you'll find lots of information about the surgery. Whilst I've not had it myself, there seems to be an almost universal view that it is a) very uncomfortable and b) rarely if ever effective. Why go for invasive surgery if other, non-invasive treatment is more likley to deal with the problem?
Similarly, you will find lots of discussion about the various types of machines and masks in earlier threads, so it's worth taking time researching before you see the doc.
The general experience seems to be that the doc will prescribe CPAP (ie fixed pressure) rather than APAP (ie variable pressure), even though the latter is a more comfortable experience and seems to produce equal or even better results.
Whatever machine you go for (my personal favourite is from the manufacturer Respironics and is called a Remstar Auto with c-flex, though others are equally postive about Puritan Bennent machines) then insist on a heated humidifier, which for most people makes treatment more comfortable.
There is far more choice of mask than machine, and it's a very individual choice. It will take time to get used to wearing one, but with perseverence it will be worthwhile. Broadly, there are 3 types:
1) A full face maks, which covers the mouth and nose. Good for people who breathe through the mouth, but more prone to leaking.
2) A nasal mask, which covers just the nose. Smaller, less likely to leak, but some people find it difficult to breathe through the nose, especially with colds or allergies.
3) Nasal pillows, which are smaller again and just sit over (or just inside) the nostrils.
Check out cpap.com or other online stores to see the range available and if you do a search for the different types in this forum you'll find lots of comments from people who've used most of them!
Good luck.
Spend some time browsing this forum and you'll find lots of information about the surgery. Whilst I've not had it myself, there seems to be an almost universal view that it is a) very uncomfortable and b) rarely if ever effective. Why go for invasive surgery if other, non-invasive treatment is more likley to deal with the problem?
Similarly, you will find lots of discussion about the various types of machines and masks in earlier threads, so it's worth taking time researching before you see the doc.
The general experience seems to be that the doc will prescribe CPAP (ie fixed pressure) rather than APAP (ie variable pressure), even though the latter is a more comfortable experience and seems to produce equal or even better results.
Whatever machine you go for (my personal favourite is from the manufacturer Respironics and is called a Remstar Auto with c-flex, though others are equally postive about Puritan Bennent machines) then insist on a heated humidifier, which for most people makes treatment more comfortable.
There is far more choice of mask than machine, and it's a very individual choice. It will take time to get used to wearing one, but with perseverence it will be worthwhile. Broadly, there are 3 types:
1) A full face maks, which covers the mouth and nose. Good for people who breathe through the mouth, but more prone to leaking.
2) A nasal mask, which covers just the nose. Smaller, less likely to leak, but some people find it difficult to breathe through the nose, especially with colds or allergies.
3) Nasal pillows, which are smaller again and just sit over (or just inside) the nostrils.
Check out cpap.com or other online stores to see the range available and if you do a search for the different types in this forum you'll find lots of comments from people who've used most of them!
Good luck.
_________________
| Machine | Mask | |
 |  |
Airsense 10 & Airfit N20
With over 30 episodes an hour (AHI = 30) You NEED to be treated. By most definitions that is considered severe OSA.
Don't get hung up on the mask, you will get used to it. You have to as it is the only EFFECTIVE way to treat OSA.
If you go the surgical route, be prepared for
a) a lot of pain
b) little results
There is only one surgery that has a fair amount of success (jaw advancement) BUT it only works if your anatomy supports it, and it is very painful, and can cause permanent numbness and tingling sensation...
Until they come up with a surgical procedure that accounts for all anatomies and has a higher success rate, I personally am waiting.
In the meantime by using a Remstar Auto with Cflex, I have the most comfortable cpap therapy and can effectively turn off my OSA without any harmful side effects.
Don't get hung up on the mask, you will get used to it. You have to as it is the only EFFECTIVE way to treat OSA.
If you go the surgical route, be prepared for
a) a lot of pain
b) little results
There is only one surgery that has a fair amount of success (jaw advancement) BUT it only works if your anatomy supports it, and it is very painful, and can cause permanent numbness and tingling sensation...
Until they come up with a surgical procedure that accounts for all anatomies and has a higher success rate, I personally am waiting.
In the meantime by using a Remstar Auto with Cflex, I have the most comfortable cpap therapy and can effectively turn off my OSA without any harmful side effects.
Wow, I know exactly what you mean about panic attacks. IN my case, they are 'probably being caused by your apnea episodes' (Sleep Tech's words).
From what I've read here (personal posts from real folks - not sales brochures), it may take some time to get used to the machine, but it is apparently well worth the patience and mask changes....
I'm nervous now about my appointment on the 19th, but I am also very anxious to get there and start treatment. In many ways, I'm jealous of ya!
From what I've read here (personal posts from real folks - not sales brochures), it may take some time to get used to the machine, but it is apparently well worth the patience and mask changes....
I'm nervous now about my appointment on the 19th, but I am also very anxious to get there and start treatment. In many ways, I'm jealous of ya!
Take off you hoseheads!
---- Bob McKenzie (Strange Brew - 1983)
Remstar Auto with CFlex (5 - 15)
Swift Mask with Medium Nasal Pillows
---- Bob McKenzie (Strange Brew - 1983)
Remstar Auto with CFlex (5 - 15)
Swift Mask with Medium Nasal Pillows
Just my two-cents on the issue of getting a panic attack at night while wearing the mask: What I've found is that, like an aviator getting used to trusting his instruments for the first time, even though the motion of the plane tells him differently, it's important to trust your mask and that it is delivering quite a large volume of air for you to breathe. Early on in my treatment I dealt with this by sort of "forcing" myself to take a huge deep breath in through my mask instead of taking it off or breathing through my mouth- and that was all it took. Once my brain made the connection that "hey, there's still air when the nose sniffs it in through the mask" then my anxiety was reduced quite a bit.
Another thing to note is that, in my experience, when I first strap on the mask and turn the machine on at night, it takes a minute or two to get used to the different pressure (taking three or four deep breaths in from the mask works very well to alleviate this) but by the time I'm waking up in the morning, I find I'm breathing normally just as though I wasn't wearing my mask at all.
So bottom line, here, I guess is that your lungs and your body will adjust to having the CPAP going on. It just takes a little getting used to.
Another thing to note is that, in my experience, when I first strap on the mask and turn the machine on at night, it takes a minute or two to get used to the different pressure (taking three or four deep breaths in from the mask works very well to alleviate this) but by the time I'm waking up in the morning, I find I'm breathing normally just as though I wasn't wearing my mask at all.
So bottom line, here, I guess is that your lungs and your body will adjust to having the CPAP going on. It just takes a little getting used to.
_________________
| Mask | |
 |
Misfit,
Don't give up on the CPAP treatment, trust me, you will learn to deal with it. You just need to find the one that works best for you. I've had the surgury, and I can tell you from first hand expirience, it hurts like hell, and in my case at least, didn't work.
You caught me on a great morning for advice. I just got a new mask a week ago, the Ultra Mirage FF mask, and, until last night, have had great luck with it, slept through the night every night. I hadn't realized how much of an improvement it had made, noticed feeling slightly better and some other minor differances, but this morning, I can really tell you, it works.
For some strange reason, I took my mask off last night after about 2 hours. Don't know why, have a vague memory of thinking I was taking it off just for a minute, but I never put it back on. And I feel like CRAP this morning. Tired, headache, foggy brain feeling. And all the sudden I realize that this is how I always used to feel. All the sudden I realize that the mask is really, really working, becuase I hadn't felt like this all week. The improvements had been gradual, but now that I've gone a night without it, I realize how much of an improvement it had made.
Trust me, I was like you, doubtful and convinced I couldn't wear a mask everynight. But now that I have for a while, and especially today, after realizing how crappy I feel without it, I'm 100% convinced that its working, and that I am going to do everything I can to continue to use it.
Don't give up.
Don't give up on the CPAP treatment, trust me, you will learn to deal with it. You just need to find the one that works best for you. I've had the surgury, and I can tell you from first hand expirience, it hurts like hell, and in my case at least, didn't work.
You caught me on a great morning for advice. I just got a new mask a week ago, the Ultra Mirage FF mask, and, until last night, have had great luck with it, slept through the night every night. I hadn't realized how much of an improvement it had made, noticed feeling slightly better and some other minor differances, but this morning, I can really tell you, it works.
For some strange reason, I took my mask off last night after about 2 hours. Don't know why, have a vague memory of thinking I was taking it off just for a minute, but I never put it back on. And I feel like CRAP this morning. Tired, headache, foggy brain feeling. And all the sudden I realize that this is how I always used to feel. All the sudden I realize that the mask is really, really working, becuase I hadn't felt like this all week. The improvements had been gradual, but now that I've gone a night without it, I realize how much of an improvement it had made.
Trust me, I was like you, doubtful and convinced I couldn't wear a mask everynight. But now that I have for a while, and especially today, after realizing how crappy I feel without it, I'm 100% convinced that its working, and that I am going to do everything I can to continue to use it.
Don't give up.
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Thor's Dad
- Posts: 4
- Joined: Tue Apr 12, 2005 2:19 pm
- Location: Virginia
Just Say NO to surgery!!!! I had a soft palate shave and a uvulaectomy and it was one of my worst decisioins ever. I get choked more easily now. I was in intense pain for several weeks following the surgery - it hurt to swallow my own saliva. Just keep working with the equipment and your doctors and get support from a local group and this listserve.
The soft palate thing and the uvulaectomy are pretty bad operations as I have heard most people describe them and don't help much. I've never had them and don't plan to but if you have a deviated nasal septum fixed or a inferior turbinate reduction if you need it, it can reduce the pressure your cpap, bi-pap, or auto pap can be set at and that will make cpap treatment much more comfortable and increase the ease at which you can adjust to cpap treatment. It will NOT cure sleep apnea so if you're doing it for that reason, don't do it. I had a severe deviated nasal septum and had it corrected surgically and it greatly improved my ability to breathe easily. It's not a big operation. It's usually done as day surgery. The worst part of the whole operation is waking up after surgery with both nostrils completely packed with gauze. You have to breathe through your mouth only while the gauze packings are in and sleep sitting up the first night. That can be pretty uncomfortable as my mouth was so dry the next day but the packings come out the next morning and it's pretty easy after that. The turbinate reduction is done in a doctor's office ususally and only takes about 15 minutes. I haven't had that done but plan to. You'll just have to think about it and gather all of the information you can but if you have any trouble breathing, I would recommend it although everybody is different and you have to do what is right for you. Let me repeat, it may reduce the pressure at which your c-pap is set at but it will NOT cure your sleep apnea!
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FL andy\
Do Not Let Anyone tell you to "insist on" or "take treatment into your own hands".
Your DME (durable medical equipment supplier), if reputable, will give you what your doctor orders. Sure, they will try to give you what costs them the least, since they are in business. But your doctor can and should prescribe what is "best" for you.
If you really know more about medicine and physiology than your doctor then you may consider taking treatment into your own hands. If you don't have that knowledge then you had better listen to what he or she recommends. Discuss options with your DOCTOR, not your DME.
If your doctor is not receptive to discuss with you your situation and your options re equipment, OR, if your doctor is not knowledgeable in sleep disorders and OSA, then spend a couple hundred bucks if necessary, *before* you do anything else, and go to a good doctor, preferably one board certified in sleep disorders (usually a pulmonologist).
Once you and your doctor agree, then your DME must give you what is prescribed. (Don't try to do it backwards.)
Most of us do not have the medical knowledge that a good board certified sleep disorder doctor has. You may have to drive a hundred miles to find one, and if you don't have insurance you'll spend a couple hundred dollars, but it is worth the time and money to get a doctor that knows sleep disorders and you trust.
If you start out correctly you will be OK.
But continue reading the apnea and other disorder discussion forums on the internet.
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MarquisdeStyle
- Posts: 20
- Joined: Sun Apr 03, 2005 12:39 pm
- Location: Nashville, TN
One more thing...
If you beg for an AutoPAP, and can't get it, don't panic. I was so sure they were going to let me get my Auto right off, and then RT brought me a Respironics Plus with C-flex and Heated Humidifier. I was disappointed, but anxious to get started. I have been sleeping like a DREAM (ha!ha!) for the first week, except for 1 night when my nose was sore.
I am like you. I have always had a fit if anything gets near my nose. I even get nuts if the warm heat is blowing toward my face in the car during the winter! I hated the nasal mask I used in my sleep study, but my nasal pillows interface has been WONDERFUL! Haven't had a panicky feeling ONCE!
I actually felt well enough to help dig out a pit for a concrete pad, and shovel a load of gravel into it this weekend, getting ready for a hot tub! This was after only 2 nights on C-PAP, and I honestly don't think I could have come close to feeling up to even watching the process if I hadn't started.
Good luck, and keep us informed on how you are doing!!
Treva
If you beg for an AutoPAP, and can't get it, don't panic. I was so sure they were going to let me get my Auto right off, and then RT brought me a Respironics Plus with C-flex and Heated Humidifier. I was disappointed, but anxious to get started. I have been sleeping like a DREAM (ha!ha!) for the first week, except for 1 night when my nose was sore.
I am like you. I have always had a fit if anything gets near my nose. I even get nuts if the warm heat is blowing toward my face in the car during the winter! I hated the nasal mask I used in my sleep study, but my nasal pillows interface has been WONDERFUL! Haven't had a panicky feeling ONCE!
I actually felt well enough to help dig out a pit for a concrete pad, and shovel a load of gravel into it this weekend, getting ready for a hot tub! This was after only 2 nights on C-PAP, and I honestly don't think I could have come close to feeling up to even watching the process if I hadn't started.
Good luck, and keep us informed on how you are doing!!
Treva
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| Mask | |
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Good promises to feed the sparrows, but He doesn't drop the worms in their nests.