Replies to This Discussion

Permalink Reply by Christine C on August 26, 2009 at 4:56pm

Hi Carole! I am newly diagnosed also. I have had my machine for a little over a week now. I had to try several different masks starting out. As a matter of fact I am waiting for my new mask to come in. Don't be afraid to call you DME if the mask you have is not working for you. It will take some time to get use to it. Last night was actually the first night that I was able to fall asleep right away. I did still wake up around 3 this morning with a slight leak in the mask, but for the most part I am adjusting quite well. My DME told me that the only way to get use to the mask is patience and persistence. I have found that very true.
There are some great people on this site and they are willing to help answer any questions you may have, so don't be afraid to ask.
Welcome to SG!
~Christine C. From NW Pennsylvania~

carole debeer said:

Hi, I was just diagnosed and titrated and tomorrow I get my machine...no one asked what kind I wanted ..the mask I used at the sleep test seemed fine..it was the smaller one with a gel outline. I am being treated at New York Hospital's sleep clinic and medicare is paying the bills(so far). I appreciate having this venue for advice and info.

I was taking all this casually until I read the posting of the death..scarey...

In any case, my name is Carole and I live in Brooklyn but hope to attend some of the manhattan meetings.

• ▶ Reply

Permalink Reply by RD on September 8, 2009 at 6:03pm

Hello, I'm Bob and I live in the Boise area of Idaho. I've been aware of the possibility that I might have sleep apnea since the late 80's. I never investigated it for the usual reasons (excuses) work, school, etc. One of the jobs I do is as a reservist emergency management worker for FEMA. The schedule from that is usually 12-on/12-off, 7-days a week until we go from a response to a recovery mode and start decreasing our duty hours. Being tired all the time is just life. So at the urging of my spouse I took a sleep test at a local hospital and this is what it all washed out to: In 262 usable minutes for the test I had 154 episodes. It breaks down like this: 1-Obstructive; 83-Central apneas; and the rest (70) hypothia?? apneas; and the Apnea Hypopenea Index = 35. What this means (laymans terms) is that I don't get enough sleep. What this means in REAL terms I don't know yet. May be someone can help explain this better?
The sleep clinic I am working with sells Resmed brand machines (with various types and sizes of masks.) I will go in for a fitting/second sleep study next Tuesday (Sept. 12th.) If someone has an opinion and a good idea about what I should be asking when I go in (and what I should be getting when I get out!!) I'd appreciate hearing from you.
Thanks.

• ▶ Reply

Permalink Reply by sleepycarol on September 8, 2009 at 6:16pm

Good for you.

If you had that many centrals during that period, with only one obstructive event, my guess is that they will set you up with a specialy designed machine that deals with central apnea vs. one that deals mainly with obstructive.

Good luck and glad you found this site.

• ▶ Reply

Permalink Reply by S Clayborn on September 11, 2009 at 5:15am

ok...you have to tell your family doctor what is going on. My husband did not believe me years ago when I told him the same thing your wife is telling you. She is losing sleep listening to you at night. Needless to say. The doc will give you an order and you go to BMH (5th floor) stay the night to have a sleep study. Then a week later call your Doc. Then you have to go back for a second one. Then they will prescibe a machine. That is it. Easy. You will sleep so much better! My husband is so glad he did it. He just went and had all this done 2 months ago....and is feeling a lot better!

Shawn Jenson said:

Hello My name is Shawn, From Indiana .aka roll1over lol , my wife tells me that she jabs me a lot at night and there are times i stop
breathing ??? its getting kind of scarry i am a type 2 diabetic , and I have recently had 3 teath pulled they were infected.
To make a long story short my blood sugar was up and down , now what I was'nt telling her was that at night i wake up with my heart pounding so bad it wakes me up at night, they have recomended i do a sleep study, i live by the muncie indiana area can anybody recomend a good one ????

• ▶ Reply

Permalink Reply by OTIS LEROY DUNN SR on September 12, 2009 at 12:22am

OTIS LEROY DUNN SR said:

Belinda Haman said:

Hello Everyone:

I am a newbie to this site and I have been diagnosed with moderate sleep apnea for four months now, I have been using the CPAP on and off since my diagnosis.....It took me some time to get accustomed to the nose pillows mask, then I went back to the sleep clinic for my sleep test with my machine....The tech's told me I needed a chin strap or a full face mask, they said my air level needed to be increased to 10....

Well the full mask has been a nightmare due to my claustophobia issues......my CPAP rep suggested that I use the chin strap because he said getting some benefits are better than not using the machine....So I took his advice and have continued on with the nose pillows with the chin strap.....unfortunately I am having trouble with my mask since my air level has been increased....I sneeze all day long and feel congested....I was sleeping okay with my mask before my level was increased. I am back to the throbing apnea headache in the morning......I leave my mask on for about an hour and half before taking it off I wake up again at 3:00 am and put it back on again for another hour and a half.....still can't sleep with it on....

I am getting so frustrated, is this normal. I have been off of work now for 8 months because before I was diagnosed I was not sleeping and couldn't function anymore at work....I want to get back to work, but I am losing hope of that happening I seem to be going backwards instead of frontwards....I can relate to your story sugarshirl, I cannot remember my last year of employment either due to severe lack of sleep.....I need to get well before I go back to work I am currently on full disability as well.....I am still walking around like a zombie :( if anyone can share their experience I would certainly appreciate it.....

This is such a helpful site, I have been on many sites for sleep apnea and this one is the best......

Thanks for letting me vent my fellow apnea survivors lol

• ▶ Reply

Permalink Reply by susan mccord on September 12, 2009 at 11:33am

Oh trust me, I've been to hell and back with this one. I had severe problems with stuffiness, runny nose, and hard, hard sneezing, headaches. It was just grim and nearly took me off CPAP 'cause I couldn't STAND it!!

The ONLY thing that will fix it is cranking up the humidification on your machine. IT WILL WORK!! I messed around with moving it up one # at a time, and nothing worked. I finally got MAD and just racked it up to 5 which is the highest mine will go. Within 1-2 days, ALL those side effects were completely gone.

If your machine doesn't have a humidification system built in, get another one that does. And adjust it as you want to, but for me I had to go full force on humidity, and have to keep it on 5 to this day. I can go down to 4 for a night or two, but then the crap starts to coming back. On 5 I don't have any of it. It's SUCH A RELIEF!! But I promise you, humidity is the key. Let me know how it's going. I'm totally with you on THIS one.....

Susan McCord :-)

OTIS LEROY DUNN SR said:

OTIS LEROY DUNN SR said:

Belinda Haman said:

Hello Everyone:

I am a newbie to this site and I have been diagnosed with moderate sleep apnea for four months now, I have been using the CPAP on and off since my diagnosis.....It took me some time to get accustomed to the nose pillows mask, then I went back to the sleep clinic for my sleep test with my machine....The tech's told me I needed a chin strap or a full face mask, they said my air level needed to be increased to 10....

Well the full mask has been a nightmare due to my claustophobia issues......my CPAP rep suggested that I use the chin strap because he said getting some benefits are better than not using the machine....So I took his advice and have continued on with the nose pillows with the chin strap.....unfortunately I am having trouble with my mask since my air level has been increased....I sneeze all day long and feel congested....I was sleeping okay with my mask before my level was increased. I am back to the throbing apnea headache in the morning......I leave my mask on for about an hour and half before taking it off I wake up again at 3:00 am and put it back on again for another hour and a half.....still can't sleep with it on....

I am getting so frustrated, is this normal. I have been off of work now for 8 months because before I was diagnosed I was not sleeping and couldn't function anymore at work....I want to get back to work, but I am losing hope of that happening I seem to be going backwards instead of frontwards....I can relate to your story sugarshirl, I cannot remember my last year of employment either due to severe lack of sleep.....I need to get well before I go back to work I am currently on full disability as well.....I am still walking around like a zombie :( if anyone can share their experience I would certainly appreciate it.....

This is such a helpful site, I have been on many sites for sleep apnea and this one is the best......

Thanks for letting me vent my fellow apnea survivors lol

• ▶ Reply

Permalink Reply by Mary Z on October 1, 2009 at 4:36pm

Hi everyone,
My name is Mary and I am in Norfolk, VA.
I was diagnosed with mild sleep apnea in April of 2008 and was given the option of a CPAP machine as I was miserable from the effects of the OSA. I could not stay awake, could not drive and had to cancel appointments, would fall asleep in my therapist's office (when I had a ride there). When I slept during the day for four to five hours I was dead to the world-phone, doorbell, and dogs. I had no energy. The doctors were good except that because my sleep apnea was "mild" they didn't take me very seriously. I changed doctors and the new doc has been much better. My sleep apnea worsened and I am waiting for insurance approval to switch from a CPAP machine to a BiPap machine.
Right now I am sleeping eight to ten hours a night and dreaming, it seems, all night. The doctor told me that before I told him! He said I was making up a sleep deficit from being under treated. I feel so much better- no more naps. I still take Provigil, but hope to wean off of that soon. The Provigil has been a miracle while we get my pressures right. I am totally compliant with the CPAP as it is so nice not to be falling asleep on my feet at 8:30 am after a full nights sleep: I have my life back again.

Thanks for listening and being here,
Mary

• ▶ Reply

Permalink Reply by Janey Clark on October 2, 2009 at 8:38am

Hello all,
My name is Janey, I live in Tacoma Wa. I am so happy to find this site. I have been lurking for a few weeks now. I finally got a new doctor who would not change my depression pills to mask any issues and she sent me for a sleep study. I was just diagnosed with OSA. I have 73 events an hour. I will be going in for my second sleep study on the 12th. I am really excited but nervous at the same time. I am excited because I finally have a root cause to alot of my issues. ITS NOT ME being lazy, or being a crazy so to speak. At the same time I am nervous that when I get the cpap and it will be a bust. ( I am not very good with machines.) I worry that I am going to be using it wrong, or that I won't adjust to it, or get strangled by the tubing ;). I just want to get to the point where I can sleep, be a better NON CRANKY mom, and that my other health issues will subside.
I am excited to hear that there are other people out there that are going through the same type of issues, that have been there and done that! I am sure that once I get my machine home, I will be posting a lot of questions!
So thank you for being here and sharing your thoughts, experiances, and advise!

• ▶ Reply

Permalink Reply by susan mccord on October 3, 2009 at 10:55am

Hi Janey--boy, I sure understand ALL your concerns. I've been there bigtime. Was diagnosed with high moderate to severe OSA in June 2009. I can say to you now, having struggled with the CPAP routine, that it's daunting at first but not to an unmanageable degree. For me, being on this site was a lifesaver. I was so exhausted to begin with that I coudn't think straight and that made everything all the more scary.

Everyone on SleepGuide is SO supportive and will walk with you as you adjust to equipment, etc. It may help if you try to take all this early process one small step at a time. For some people it goes very smoothly. For others, adjusting can be more complex. I was one of the latter. Neither is normal or abnormal. It just is what it is and everyone is different.

The GOOD news is you're diagnosed and can now begin the process of re-claiming your life and your energy, to say nothing of your health and your very life!! There is a light at the end of THIS tunnel called sleep apnea. It rests in doing the best you can to comply with treatment (i.e., CPAP) and taking charge of your own health. Coming onto SG is a HUGE step in the right direction.

Here you'll learn that you're NOT crazy, that you can speak for yourself about issues that concern you, not just here, but with your healthcare providers. There's a ton of practical, problem-solving that's available here to say nothing of a whole bunch of people, both patients and professionals who "get it".

I'm so glad you've joined us. Welcome!!, and keep the faith. We've all had the same doubts and fears as you, and we're all still here to talk about it. (And talk, and talk, and talk.....LOL !!!!)

You'll also find a great deal of humor and camaraderie as you get to "know" people through cyberspace. I'm gonna send you a friend request. You'll receive many others which you can accept or decline as you choose.

Looking forward to joining you in your journey back to health and wellbeing!!

Susan McCord :-)

Janey Clark said:

Hello all,
My name is Janey, I live in Tacoma Wa. I am so happy to find this site. I have been lurking for a few weeks now. I finally got a new doctor who would not change my depression pills to mask any issues and she sent me for a sleep study. I was just diagnosed with OSA. I have 73 events an hour. I will be going in for my second sleep study on the 12th. I am really excited but nervous at the same time. I am excited because I finally have a root cause to alot of my issues. ITS NOT ME being lazy, or being a crazy so to speak. At the same time I am nervous that when I get the cpap and it will be a bust. ( I am not very good with machines.) I worry that I am going to be using it wrong, or that I won't adjust to it, or get strangled by the tubing ;). I just want to get to the point where I can sleep, be a better NON CRANKY mom, and that my other health issues will subside.
I am excited to hear that there are other people out there that are going through the same type of issues, that have been there and done that! I am sure that once I get my machine home, I will be posting a lot of questions!
So thank you for being here and sharing your thoughts, experiances, and advise!

• ▶ Reply

Permalink Reply by susan mccord on October 3, 2009 at 10:52pm

Welcome Dr. Hakimi!! I don't need a dental appliance but we're always so happy to have a new doc join us. Your input is SO valuable to patients, and we're glad to have you on SleepGuide. I'm sure you'll be getting many questions--there hasn't been a dental MD on here, as far as I know, so stay tuned!! And thank you for joining THE best apnea website on the planet!!

Susan McCord :-)



Juan Beer said:

Thank You Doctor. I will look into this with interest.

Dr. Farhad Hakimi said:

Hi, I'm Dr. Farhad Hakimi from New York City. I am a Board-Certified Maxillofacial Prosthodontist, who is also devoted to treating patients who suffer from Sleep Breathing Disorders like Obstructive Sleep Apnea and Snoring with my patented oral appliance. My oral appliance is non-invasive, non-surgical and highly tolerable. I am very pleased to be a member of this forum and would be more than happy to provide more information to anyone who would like to know more about Oral Appliance Therapy in treating Obstructive Sleep Apnea and my very own VIAdmd oral appliance. You can also visit my website at www.VIAdmd.com

• ▶ Reply

Permalink Reply by Jerri Lynn on October 4, 2009 at 7:27pm

I'm new to this. Was just diagnosed in Aug with severe sleep apnea with 33.13 AHI, 73% sleep efficiency, 83% oxygen saturation. Did a 2nd night sleep study with CPAP. The people were nice but basically didn't give a darn what I had to say about mask preferences. They basically told me they were the experts and to follow their recommendations. They only allowed me to use nasal pillows which left my left nostril sore and bloody for two days and then sore with scabs for another 3-4 days. That was 9 days ago. Haven't heard back from my doctor. I'll call him tomorrow. I already know what provider I want to use and what is covered by my insurance but I think everyone has their hands in money for the CPAP so everyone involved in the study wants me to use certain products and certain CPAP providers. The whole thing has me very upset and concerned. I feel everyone is in it more for the money than for my health and comfort. How do I handle this? The sleep study facility I went to, would only use and recommend to my doctor, Respironics products. I think I should have some say in this since I'm the one that has to use it. I want to try a product called Nasal-Aire II by Devilbiss, Item # K2A. The sleep study facility simply trashed every product that isn't by Respironics.
I don't have a very open mind about any of this to begin with, and would prefer to go the surgical route although the success rate is low. But at least there would be some even slight chance of improvement. I'm seeing an ENT surgeon tomorrow but will at least try the CPAP for 3 months before proceeding with surgery if the providers will take my opinions into consideration instead of looking at the profit in it for them.
Please everyone, give me your feedback and guidance. Any assistance would be greatly appreciated.

• ▶ Reply

Permalink Reply by susan mccord on October 4, 2009 at 8:10pm

Hi Jerri!! Welcome to SleepGuide!! You have DEFINITELY come to the right place. Sounds like your experience to date has not been a positive one. You're not alone!! Everyone on here has a story to tell, and many have had problems and issues with the entire diagnostic/early treatment process. You'll find that everyone on SG is very supportive, kind, and many are quite knowledgeable about the ins and outs of sleep apnea. There are also several sleep professionals on SG--sleep techs, respiratory therapists, sleep MD's, etc., all of whom donate their time to SG in order to bring another piece of expertise to us

I'm glad you're gonna give CPAP a try before jumping into surgery. I was pretty resistant to CPAP when I started on it in July (was diagnosed in June 2009). Had a tough time with side effects and just with the entire process in general. I found this site and have gotten TREMENDOUS support throughout which, frankly, helped me both initiate treatment, and STAY in treatment till I got adjusted to it. Some people adjust easier, others just don't. It can be a difficult time when you don't know what's going on, who's making what decisions and why, etc. I'm sure I don't have to explain this to you. You're already there.

The thing about CPAP is that it's really the gold standard treatment for apnea for most people. From what I understand, surgery is usually a last-choice option, not a first choice, mostly because the success rate is so much lower than with CPAP. So I hope you can keep an open mind till you have a bit more information and, hopefully, have gotten your sleep stabilized somewhat. Surgery of any kind is a huge decision, as you well know.

As for the equipment choices, I wasn't given a choice either. Am on a respironics machine and mask--I've gone through 3 masks till I found one that really fits and doesn't leak, at least not excessively. However, I'm fortunate to have a really good DME tech who's worked steadily with me to get my equipment and me adjusted to each other! And I have to say, despite having a rocky start myself, I'm doing much, much better now. Sleep's way improved, my memory/concentration is better, I can drive now, and I'm just slowly beginning to feel better. The key word here is "slow"--it just takes our bodies a fair amount of time to begin to heal. There's no formula--people are different--but there's a quiet little rule of thumb that it'll take 90 days or so to begin to get full benefit from CPAP. That sounds like a long time when you're exhausted and miserable, but there's just no quick fix for any of this. And that includes surgery. Not a quick fix. There are people who have been on here (not many) who have had surgery and then ended up on CPAP anyway, so I hope you can allow yourself time to get educated, receive more info, and a LOT of support which you'll find right here.

This is a GOOD decision on your part, coming to SleepGuide. I have no stake in this site at all except personal experience as a patient. It's been a lifesaver for me.......

You have a right to refuse nasal pillows, especially now that you know what effect they have on you. Don't be afraid to speak up for yourself. Have you seen a sleep specialist (MD) yet? That's the person who can write the prescription for your machine. If the sleep lab is in bed with the rest of the sleep treatment community where you live, you may have to be pretty assertive to be heard. Also, depending on where you live, the DME companies may be limited and they're often contracted with certain equipment companies. If there are a limited # of DMEs, and there's no competition, you may need to give their recs a try. Respironics, speaking only for myself, seems to make good equipment. A lot of people on SG use their stuff.

You'll no doubt be receiving a # of responses to your situation from members of SleepGuide. They will provide you with many ideas re: how best to proceed.

Susan McCord :-)

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• …
• 5
• 6
• 7
• 8
• 9
• …
• 14
• Next ›
• Page