Hello...
I am new to the group and just diagnoised yesterday with severe Obstructive Sleep Apena. I have suffered for years and it has gotten to the point that I almost pass out on some days while i am standing or wide awake. I went to my doctor for numerous years, I was told it was depression, I was told it was stress, I was put on drugs for these things, and still felt horrible and continued to expereince numerous different very strange things happening to me....examples...I can not think clearly any longer I actually went out of my home for a important appointment and realized half way there to the appointment I did not put under garments on...I walked out of my house with two different shoes on to go to a formal dinner party my daughter stopped me and asked hey Mom why are you wearing one high heel blue and one lower heel black? I slur my words most day like i am drunk. I forget in mid sentence what I was about to say. My legs and arms feel as if i have cement bags attached to them. This is how I have lived for years now. Finally when I started to pass out the doctor decided to send me to a Neurologist and a Heart Doctor. I think when I went to the doctor prior to this I would always end up crying because I was so frustrated I was sick and tired of feeling sick and tired but when I started falling and putting lumps on my head that he finally woke up to the fact that what I was telling him was FOR REAL! Well i was diagnoised yesterday with two things by the neurologist one severe obstructive sleep apena and the other is a Autonomic Nervous System disorder which causes my brain not to function properly and causes functioning problems (Blood pressure, Heart beat etc) So here I sit now terrified what is next the Doctor is calling the hospital this morning and they are setting it up that I go back in for the CPAP. Which he said that now that we know what the problems are that he truly feels that with this CPAP that in a few weeks I will start to feel much better, and may even be able to stop taking the anti depressants and stress medications. That I will feel alive again and not have these horrible black circles under my eyes and other good positive things. He also has be taking 600 Mg of Alpha Lipoic Acid as well. I am thrilled I found you all and I guess I am just looking for others to tell me things are going to get better now and maybe share with me what I can expect with the CPAP machine, I am too tired and worn out for any surprises. Such as nose bleeds or whatever. One person told me it is going to be horrible she suffers what she insist is caused by the machine high blood pressure, severe nose bleds and such...I hope that is truly not the case because I am looking forward to feeling better so much. Thank you for allowing me to ramble on here I guess I am just a little scared this is all to new for me to digest as of yet.
New to the group and wondering what is next?
Don't be scared.
Here's a list of the worst things you *MAY* have to look forward to:
Masks leaving little red marks on your face.
Gas/bloating
Sinus headaches (initially)
Dry mouth/throat/sinuses
Discomfort from wearing a mask to sleep.
Compare that to the alternatives, though, and recognize that most people DON'T get all of this list....
What they're going to do is fit you with a mask and a CPAP machine, and tell you to strap it to your face all night, every night, to keep your airway open. Works wonders for many people.
If you have time, read through this board carefully and get people's advice for machines. Go in informed, because MOST suppliers will try to give you what THEY want to give you (that being the cheapest equipment they can, because the insurance company pays them the same amount either way).
I strongly advise looking at prices for equipment on CPAP.COM, you may very well find that when you take deductibles and copays and coverage limits into consideration, you'll find it cheaper to just order all of your equipment from there and skip the DME entirely, even if the insurance says they won't cover it.
Finally, depending on the mask type you like, try to get either the Activa (nasal mask), Ultra Mirage (full face mask) or Swift or Breeze (nasal pillows masks). As a starting point, you could do MUCH worse.
Stay away from pretty much anything with "Comfort" in the name (Respironics makes wonderful machines, and crappy masks).
And if the size doesn't feel right, speak up. Don't let the DME put you into something because they tell you it's right, we hear story after story of people who ended up in a mask way too big or small for them, because the DME only had one size, but told THEM it was the right size for them. Improperly fitted masks (and uncomfortable/leaky masks) are among the highest reasons for lack of compliance.
Liam, Hiyo Silver, Away!
Here's a list of the worst things you *MAY* have to look forward to:
Masks leaving little red marks on your face.
Gas/bloating
Sinus headaches (initially)
Dry mouth/throat/sinuses
Discomfort from wearing a mask to sleep.
Compare that to the alternatives, though, and recognize that most people DON'T get all of this list....
What they're going to do is fit you with a mask and a CPAP machine, and tell you to strap it to your face all night, every night, to keep your airway open. Works wonders for many people.
If you have time, read through this board carefully and get people's advice for machines. Go in informed, because MOST suppliers will try to give you what THEY want to give you (that being the cheapest equipment they can, because the insurance company pays them the same amount either way).
I strongly advise looking at prices for equipment on CPAP.COM, you may very well find that when you take deductibles and copays and coverage limits into consideration, you'll find it cheaper to just order all of your equipment from there and skip the DME entirely, even if the insurance says they won't cover it.
Finally, depending on the mask type you like, try to get either the Activa (nasal mask), Ultra Mirage (full face mask) or Swift or Breeze (nasal pillows masks). As a starting point, you could do MUCH worse.
Stay away from pretty much anything with "Comfort" in the name (Respironics makes wonderful machines, and crappy masks).
And if the size doesn't feel right, speak up. Don't let the DME put you into something because they tell you it's right, we hear story after story of people who ended up in a mask way too big or small for them, because the DME only had one size, but told THEM it was the right size for them. Improperly fitted masks (and uncomfortable/leaky masks) are among the highest reasons for lack of compliance.
Liam, Hiyo Silver, Away!
_________________
| Machine | Mask | |
 |  |
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Hi Fruitloop,
Lucky for you that you found your way to this message board. Things can, indeed, get better now that your sleep apnea has finally been diagnosed.
Don't be dismayed by the person telling you about problems she has that she's attributing to using a cpap machine. Most people on cpap find their blood pressure going back down to more normal levels, and most will not suffer nose bleeds. Do insist on a heated humidifier being added to the prescription for the machine. Heated humidification makes this kind of treatment much kinder to the nasal passages and can make the whole thing more comfortable for many people. If it turns out you don't actually need heated humidification, the humidifier's heat can always be turned off.
Some people take to this like a duck to water. Others take longer to get used to sleeping with a mask on. So don't be discouraged if it takes awhile to get accustomed to a different way of sleeping. As you already know, it will be a better way of sleeping even though it takes some getting used to. For awhile you'll be trading one kind of sleep disruption (your severe sleep apnea) for another kind of sleep disruption (getting used to the equipment.) A disruption is a disruption, so you might not feel much improvement at first, or even for weeks. Stick with it, though, with the knowledge that you and the machine together are preventing further damage and are starting a good healing process.
The mask is the #1 stumbling block, imho, to getting comfortable with this kind of treatment. Most home health care places that will be setting you up with your equipment don't know beans about what masks are comfortable. So, write these names of masks down and insist that you be allowed to try these on:
ResMed Activa
ResMed Swift
ResMed Ultra Mirage
Puritan Bennett Breeze with nasal pillows (and whatever size of nasal pillows they say you should have - insist that you be given the next larger size - not the ones they tell you "fit" you.)
If the sleep study recommended that you be prescribed a full face mask (covers both the nose and mouth, not the entire face), the mask to insist on is the ResMed Ultra Mirage FF...don't accept the Respironics ComfortFull full face mask.
I'm not a doctor or anything in the health care field, but I have a very strong opinion about this: If the home health care place tries to get you to accept any mask made by Respironics, no matter how "popular" they say it is with their patients, refuse and hold out for one of the masks I mentioned. Respironics makes good machines, but leaky uncomfortable masks, in my opinion. Several of the masks the home health care place will say are "exactly right for you" might feel ok, or even quite comfortable when you try them on for a few minutes. But a lot of masks that feel fine when first put on are not at all comfortable after you are actually lying down in sleeping position. Some can even rub a sore on the bridge of the nose in just a few nights.
Also, do not accept a machine without a humidifier.
Don't accept a machine with a passive, cold water humidifier. Insist on a heated humidifier, even if it means the home health care place has to call the doctor and get that added to the prescription as "medical necessity".
To avoid some of the problems you might have dealing with the home health care store try this...if you have a very cooperative doctor. Try to get him to write these specific things down on the prescription ahead of time so that the home health care place cannot make substitutions:
machine: Respironics REMstar Auto with C-Flex and heated humidifier, C-Flex set at 3. (The doctor will also include whatever pressure range he wants the machine to use for you, e.g., 6 - 14 cm.)
mask: ResMed or Puritan Bennett brand, patient's choice.
I know this sounds like a lot to digest and a lot to "insist" on when you are just starting out. But if you can get those things, rather than whatever the home health care store tosses in your lap, you'll be better equipped to more comfortably deal with this "new way of sleeping". And you won't be wishing down the line, "Gee, I wish I had known to ask for that at the beginning."
Of course insurance companies can balk and make you have to settle for bare basics sometimes. But shoot for the "good stuff" right at the beginning, if you can.
Gotta always use it when you sleep in order to really get good treatment. And gotta be comfortable with it to be willing to use it during every sleeping moment. So the right equipment from the start is important!
Lucky for you that you found your way to this message board. Things can, indeed, get better now that your sleep apnea has finally been diagnosed.
Don't be dismayed by the person telling you about problems she has that she's attributing to using a cpap machine. Most people on cpap find their blood pressure going back down to more normal levels, and most will not suffer nose bleeds. Do insist on a heated humidifier being added to the prescription for the machine. Heated humidification makes this kind of treatment much kinder to the nasal passages and can make the whole thing more comfortable for many people. If it turns out you don't actually need heated humidification, the humidifier's heat can always be turned off.
Some people take to this like a duck to water. Others take longer to get used to sleeping with a mask on. So don't be discouraged if it takes awhile to get accustomed to a different way of sleeping. As you already know, it will be a better way of sleeping even though it takes some getting used to. For awhile you'll be trading one kind of sleep disruption (your severe sleep apnea) for another kind of sleep disruption (getting used to the equipment.) A disruption is a disruption, so you might not feel much improvement at first, or even for weeks. Stick with it, though, with the knowledge that you and the machine together are preventing further damage and are starting a good healing process.
The mask is the #1 stumbling block, imho, to getting comfortable with this kind of treatment. Most home health care places that will be setting you up with your equipment don't know beans about what masks are comfortable. So, write these names of masks down and insist that you be allowed to try these on:
ResMed Activa
ResMed Swift
ResMed Ultra Mirage
Puritan Bennett Breeze with nasal pillows (and whatever size of nasal pillows they say you should have - insist that you be given the next larger size - not the ones they tell you "fit" you.)
If the sleep study recommended that you be prescribed a full face mask (covers both the nose and mouth, not the entire face), the mask to insist on is the ResMed Ultra Mirage FF...don't accept the Respironics ComfortFull full face mask.
I'm not a doctor or anything in the health care field, but I have a very strong opinion about this: If the home health care place tries to get you to accept any mask made by Respironics, no matter how "popular" they say it is with their patients, refuse and hold out for one of the masks I mentioned. Respironics makes good machines, but leaky uncomfortable masks, in my opinion. Several of the masks the home health care place will say are "exactly right for you" might feel ok, or even quite comfortable when you try them on for a few minutes. But a lot of masks that feel fine when first put on are not at all comfortable after you are actually lying down in sleeping position. Some can even rub a sore on the bridge of the nose in just a few nights.
Also, do not accept a machine without a humidifier.
Don't accept a machine with a passive, cold water humidifier. Insist on a heated humidifier, even if it means the home health care place has to call the doctor and get that added to the prescription as "medical necessity".
To avoid some of the problems you might have dealing with the home health care store try this...if you have a very cooperative doctor. Try to get him to write these specific things down on the prescription ahead of time so that the home health care place cannot make substitutions:
machine: Respironics REMstar Auto with C-Flex and heated humidifier, C-Flex set at 3. (The doctor will also include whatever pressure range he wants the machine to use for you, e.g., 6 - 14 cm.)
mask: ResMed or Puritan Bennett brand, patient's choice.
I know this sounds like a lot to digest and a lot to "insist" on when you are just starting out. But if you can get those things, rather than whatever the home health care store tosses in your lap, you'll be better equipped to more comfortably deal with this "new way of sleeping". And you won't be wishing down the line, "Gee, I wish I had known to ask for that at the beginning."
Of course insurance companies can balk and make you have to settle for bare basics sometimes. But shoot for the "good stuff" right at the beginning, if you can.
Gotta always use it when you sleep in order to really get good treatment. And gotta be comfortable with it to be willing to use it during every sleeping moment. So the right equipment from the start is important!
A lot of great info in your response rested gal. I am also new to CPAP treatment. I stopped off at my DME this am on the way to work to try out different masks. My second sleep study (titration night) I was fitted with a nasal mask. I found it near impossible to keep my mouth shut and I felt like I was being suffocated. In the morning, I told them I just wasn't going to be able to do this. They suggested a Breeze nasal pillows mask and that's what I went home with. I'm sure it's a very fine product and works well for many but it did not work well at all for me. It hurt my nose and nostrils no matter how I adjusted it; I found it VERY difficult to exhale against the incoming air (my setting is 18) and I did not like the "hose over the head" setup. This morning, my DME had me try on a Fisher and Paykel Flexi-Fit HC431 full face mask - which just happened to be one of the models I decided would be a possibility based on my own research. From what I could tell in the office, the fit seems quite good - I like how it goes down over the chin. Also, since I tend to be a nightime mouth breather, I believe it will allow me to be more relaxed because I won't be concentrating on keeping my mouth closed. I realize it will be an adjustment no matter what mask I have but I am praying that this will be "the one." What I wouldn't give to awake in the morning feeling at least somewhat rested and refreshed. I am very thankful I discovered this forum. I look forward to reading all the great info within. I will also post my results with this "new to me" mask. Thanks everyone.
I agree with rested gal about the remstart auto with c flex and heated humidifier. Its one that I would insist on. There is no use running higher pressures than required that happens sometimes with a straight pressure cpap. Also you can get the software and monitor your condition. I used a cpap for a year at a pressure of 11. When I tried that pressure with my auto just to see what would happen, my AHI went thru the roof!!!. So do ANYTHING you have to to get the auto. The c flex alone is worth it.
Hi Fruitloop,
Welcome, fellow Marylander!!
If you don't mind my asking, where in Maryland do you live?
(If you don't like posting that information but want to answer, feel free to send me a PM, a private message, if you like)
I'm from Upper Marlboro, Maryland, in the DC area. And I grew up on the Eastern Shore.
You've probably noticed there are a lot of helpful and supportive people here on the forum. So feel free to write and tell us what you are going through, if you wish. This can be a scary and lonely diagnosis and treatment process, but as you see, you are not alone. We are all finding out that there are more of us out there than we realized.
Whatever you do, try and learn all there is about this. And be sure to get a copy of the sleep study report. There is a lot of information that is useful to know. And people here can help you better knowing what you're going through. Good luck to you. I hope you keep in touch with the forum.
Linda
Welcome, fellow Marylander!!
If you don't mind my asking, where in Maryland do you live?
(If you don't like posting that information but want to answer, feel free to send me a PM, a private message, if you like)
I'm from Upper Marlboro, Maryland, in the DC area. And I grew up on the Eastern Shore.
You've probably noticed there are a lot of helpful and supportive people here on the forum. So feel free to write and tell us what you are going through, if you wish. This can be a scary and lonely diagnosis and treatment process, but as you see, you are not alone. We are all finding out that there are more of us out there than we realized.
Whatever you do, try and learn all there is about this. And be sure to get a copy of the sleep study report. There is a lot of information that is useful to know. And people here can help you better knowing what you're going through. Good luck to you. I hope you keep in touch with the forum.
Linda
Not to take things WAY off topic or anything, but I was in MD this weekend... Along with SC, VA, DE, NJ, NY, CT, MA, VT and then back to NH.
Truly, a stately weekend.
Liam, STATEing his itinerary.
Truly, a stately weekend.
Liam, STATEing his itinerary.
_________________
| Machine | Mask | |
| |
Liam1965 wrote:Not to take things WAY off topic or anything, but I was in MD this weekend... Along with SC, VA, DE, NJ, NY, CT, MA, VT and then back to NH.
Truly, a stately weekend.
Liam, STATEing his itinerary.
So Liam, which law were you running from?
Or, which state kicked you out first? (presumably SC)
You were in Maryland and you didn't call me?? Tsk, tsk!
Linda
Rte 85 to Rte 95, all the way up. (Well, no, since I used to live in NJ, I know better than to go through NYC, so I got on the GSP and across Tappan Zee, etc... But 95 near you).
Liam, getting my kicks on rte, er, 95.
Liam, getting my kicks on rte, er, 95.
_________________
| Machine | Mask | |
| |
However, our good new friend Fruitloop didn't sign in here to learn where I drove and how close I was to each of you....
We should get back onto topic, helping another new hosehead to succeed where, um, I failed.
Liam, failure.
We should get back onto topic, helping another new hosehead to succeed where, um, I failed.
Liam, failure.
_________________
| Machine | Mask | |
| |
I THOUGHT my heart felt a flutter...!!!
(and I thought it was from not taking my BP medication)
Linda, whos heart was all a flutter with Liam's aura in close proximity (was it you I nearly ran off the highway?). I felt something in the air, I just know it!
Sorry, Fruitloop......... please keep in touch in spite of us!
Let us know how you're doing!
We all want to help.
(and I thought it was from not taking my BP medication)
Linda, whos heart was all a flutter with Liam's aura in close proximity (was it you I nearly ran off the highway?). I felt something in the air, I just know it!
Sorry, Fruitloop......... please keep in touch in spite of us!
Let us know how you're doing!
We all want to help.
Good point,
Fruitloop, dunno if you saw the post bout the lecture in DC on sleep apnea, but you might want to attend, sounds like it will be interesting and you might get a chance to meet a few locals...
Sleep Apnea lecture in Washington
Fruitloop, dunno if you saw the post bout the lecture in DC on sleep apnea, but you might want to attend, sounds like it will be interesting and you might get a chance to meet a few locals...
Sleep Apnea lecture in Washington
Mikesus wrote:Good point,
Fruitloop, dunno if you saw the post bout the lecture in DC on sleep apnea, but you might want to attend, sounds like it will be interesting and you might get a chance to meet a few locals...
Sleep Apnea lecture in Washington
Fruitloop,
Glad Mikesus mentioned this. If you're in the area, feel free to come to the lecture. I intend to be there. (don't worry, Liam won't be there...ha!)
Linda