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I have only recently joined. It looks a great place. I think it has only just hit me that I will be wearing this mask with machine, for the rest of my life. I have had sleep apnoea for a few years but have only recently started treatment again, after a few years gap. It really frightens me when I read people saying that it can cause strokes, heart attack or even death. I am really down at the moment. I also have type 1 diabetes. Treated with an insulin pump. I should be grateful for the things that the nhs supply me with, but sometimes I think why bother? I am really frightened and keep crying. Sorry for moaning. Does anyone else feel this way?

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I was ABSOLUTELY thrilled to finally get the OSA diagnosis. I was born with a number of problems in my respiratory tract that caused OSA. In addition, I developed a deviated septum which can also contribute to OSA. I had complained to PCPs for years about being tired and sleepy all of the time. The most any of them would do was order a thyroid test and say there was nothing wrong when it came back as normal. Then my PCP put me on a muscle relaxant to help with back pain. The situation got so bad that my hubby of 35 years could no longer tolerate my snoring like he had before. He told me that it would wake him up at night. Then he would look over at me and see that i had stopped breathing. This was the first I knew of any such thing happening. I knew exactly what I had. I researched it on the internet and realized that I had been born with it. I went to my PCP and had a dickens of a time getting her to refer me for the test. I finally talked her into the referral. Sleep dr's recommendations: (1) See an ENT and have surgery. (2) CPAP. At the time, I had other serious issues going on, so I chose to begin with CPAP. I also saw an ENT. He ordered some specialized tests and recommended several surgeries for me. (There were 2 other surgeries that he could do, but he recommended that I NOT have those surgeries if I could avoid them; too risky and I wasn't bad enough off to take the risk). I underwent the surgery for one of the other medical issues. Then I began to summon up the courage to go back to the ENT to discuss what he wanted to do. I began undergoing those other surgeries, one at a time. After I recovered from the 3rd surgery, CPAP finally began to work for me.  (Previously, it had only been a small step in the right direction._ After the final surgery, I became CPAP free.

 

To me, the diagnosis was not depressing - it was exciting! I finally had someone believing me when I said I was tired all of the time. I also finally had something I could treat!

 

Look at the diagnosis as being an exciting first step on your new adventure in living! Note how much better things are going to be with treatment than without.

 

One thing to remember is this: There is no one treatment that is best for everyone. CPAP (and related treatments) are safe for everyone. However, that doesn't mean that it is the best treatment for everyone. Weight loss can help if your OSA is related to being overweight. However, my ENT told me that no amount of weight loss would be beneficial in treating my OSA since I am not overweight enough for that even being a contributing factor, let alone the cause of my OSA. For me, surgery was the best option. I had several congenital issues plus one hereditary issue going on. I could not believe how much better my life could be until I had recovered from each surgery. I always thought, "It can't get better than this!" after each surgery. Then it did get better! I am now CPAP-free and hope to stay that way for many years to come.

 

One thing to remember is this, don't assume that if something was best for another person, that it will be best for you. I am thrilled with the results of surgery. However, for some people, surgery is not recommended, it may not even be possible. PAP is a fantastic starting point for everyone. It is the only feasible treatment for some. There are some who have good experience with dental devices, but they are a bad idea for others. (My ENT told me NEVER consider having a dental device - I already had TMJ problems [even tho' I have never experienced pain with it]. A dental device would cause me harm.)

 

You have your diagnosis from a sleep study. Be sure to see an ENT and get a thorough evaluation including a specialized CT scan. The ENT needs all of the information he can get to decide if you have hidden issues that need to be addressed.

 

Although it would see strange to celebrate having OSA, you can celebrate the diagnosis. You can treat it and go about living a "normal" life.  That is something to celebrate.

Hi Carolyn: I felt slightly down at first too, I think most do.

But when realizing the  benefits vs the serious issue's from not using it _

Or imagine if you could afford to have one - I think we can change our view point and began to just incorporate right into our lives.

For most who are educated on the benefits of the therapy, well soon it just becomes no big deal and is like brushing our teeth every night before we go to sleep.

In time it blends in.

My brother started his new adventures in sleep lol when he was only 40 yrs old, at first he didn't understand the benefits, but soon enough he could see how much it was benefitting him and he just will get very upset if he were without it!

So for most folks with moderate to severe sleep apnea, with  the right cpap pressure's and the right mask- they are thrilled to have it,

Hang in there, and I hope you be will too soon enough.



Cliff said:

i sorta feel the same way - i had a sleep study done 3 years ago and they put me on a cpap machine.  it was so bulky and annoying, i ended up not using it.  3 years later, i was having some issues due to my sleep including falling asleep during the day, or not being able to function during the day due to being tired.  i went back to the sleep lab last week and got re-diagnosed with moderate to high sleep apnea and am now being told that it got worse because i didn't use the cpap when i should have.  

i am a little depressed about it to, as when i had used the previous cpap, it was loud and my wife didn't want me in the room with it, as it kept her awake, so i was always sleeping in the guest bedroom.  not a way to keep a marriage alive!

i hope they make a better cpap that is more quiet and more comfortable, instead of making me look like some monster out of a movie with the huge mask they put over the head / face.

Well said Jay: I agree with you. Some folks -especially with more severe apnea do adapt faster. Not everyone struggles as much.  Honestly it seems like some of my clients want to punish themselves with the therapy.

But I think a lot of the issue's that arise come from not having adequate education and possibly poor quality sleep studies. And then not seeing the right Dr's.  I think it's a mistake to trust that the average primary care Doc would know about Cpap Therapy! So try a Dr CERTIFIED in sleep. I'm not sure but I think that an ENT Dr- Certified in sleep is the best at understanding the apnea, and the Cpap therapy.

And the goodnews is that new strides are being made rather rapidly in the cpap therapy as well as the interfaces. Keeping current and up to date is so key to over coming issue's that arise along the sleep adventure.

I was trying to reply to Warren's comment directly too- I hope he reads this as well. It's ashamed that he didn't have more support- but it's cool that he is generous to share what he has learned with us newbies :)

I'd like to hear more about his hepa filter? I have a Client that was insisting on bacterio static filters, but it didn't work- (I tried to tell him)

I am an RT also, but have a very different perspective from other RT's/ and I also use a Cpap Machine. I am a Patient Educator. I do not do the sleep studies, I instruct the patients on the use of them. And I always feel that I cann learn a lot from the Cpapers.

Happy to try to help anyone I can. Sweet dreams everyone.
Jay Polatnick said:

Warren,

 

         I cannot dispute your personal experience and I'm sure you've been through alot, but one person's experience doesn't translate to everyone's.   Sleep Apnea is not a death sentence.  In fact, I think I've gained greater understanding why I experienced certain things in in life like I did.  I see it more as a 'journey', albeit a difficult one, but with vigiliance, discipline and a thirst for knowledge, improvement is very possible.


Best Regards

Warren A Noblick said:


Sharon, I cannot believe that a RTT you would sugarcoat the truth. Yes for a person new to CPAP it can be very depressing. Because not only do I have apnea I also have clinical depression. After my first polysomnograph in July 2008, I was told that the gold standard for treatment of sleep apnea CPAP, would completely change my life. Well it did but not the way my sleep Dr and his technician told me. This is July 2011 I have compliant for 3200 hours. What I didn't find out until three years later at 65% of all CPAP patients who are compliant with still have hypersomnia during the day. In the only answer that they have for you is to take three kinds of stimulants. Pro-vigil, Nuvigil and amantadine. In short I was lied too. Apnea is lifelong, you will never ever get off of CPAP. For one thing not only is equipment for treating sleep apnea four times overpriced, equipment is not designed with the recommendations of apnea patients. All of the five mask that I've tried I've had to modify to prevent leaks. Extra Velcro straps and since chinstrap do not work for nasal pillows masks I have to tape my mouth shut with medical tape. I have used the Fischer and Pakel Sleep Stye, the original Resmed Swift nasal pillows, the Resmed liberty mirage, the Resmed Quatro full face mask and now I am using a new Resmed FX nasal pillows. I doubt seriously if you sleep technicians strap on a mask and try to sleep with it all night. And another thing standard CPAP without any privations to lower the pressure when you exhale should be done away with. Nobody gets used to them. The air pressure resistance when you're trying to exhale it's like balloon all night. Your lungs burn the next day from the exertion. Trying to breathing against your full inhalation pressure.

If you have sleep apnea you better have a lot of money. I am lucky that I have good insurance. My Resmed elite II with EPR and humidifier costs $3800. But the cost do not and there.

My masks have cost between $200-$400, $72 for a mask seals, $65 per CPAP hose's and $16 for little piece of polyethylene fluff that they called filters. And last but not least $100 for the headgear to hold the mask on my face. I have some advice for all of you that are new to CPAP. You're going to encounter some problems in your therapy that sleep Dr. never told you about. You better have a heated humidifier because with out it both of your nostrils will become blocked during the first 10 minutes to put the mask on. And they are several problem of rainout. Rainout used when the humidity in your CPAP is condense this back in to the water and flood that your mask with water. I can assure you that when you start snorting that water you'll be pulling your mask off in our hurry.

After three years of improvisation with my equipment I found out how to be the above mentioned problems. There is another piece of equipment you're going to have to buy to make your therapy tolerable. One you need to buy a good room humidifier. Humidifiers on the CPAPs do not do the job alone. You will also need a Heppa filter, to prepare your nostrils for CPAP therapy I have a few tips for you. You're going to have to moisten your sinuses as much as possible before you put the mask on. The best way that I have found is to use the Netti pot. If you have any kind of nasal congestion issues sinus rinsing is a esential. The pot looks like a little teakettle. You have to use salt packets that come with it to balance the pH of the water. You let the water flow into one nostril and let it run out the other. There are also nasal moisturizing gels that you can use. Here are a few tips to prevent rainout. They have covers that you can put on your CPAP does to insulate it from the temperature of the room. The solution that I found that worked the best was to buy an electric blanket. CPAP hose is normally come in 6 foot links. All of the extra hose that you are not using place that folded under the electric blanket.

I wish that someone would've told me about the solutions to make therapy tolerable. But let me add, never give up. If you've been diagnosed with sleep apnea you're going to have to you adapted version of CPAP. If after all the things that I've just told you do not work. There is always the option for a dental appliance. Checking your area for dentist that practice sleep medicine. They can make you a device that you put in your mouth before you go to bed. This device has to be specifically fitted to you. They are not cheap either. They can cost anywhere from $1000-$3000. They work by moving your lower jaw forward.

Now that you've heard the truth from another sleep apnea patient don't let your sleep Dr. there technician give you a snow job.

Well enough of the gloom and doom. You will adapt to it. If you ever expect to have a normal life again you're going to have to be compliant.


Sharon Beatrice Gray said:

Hi Carolyn,

 

Being diagnosed with OSA does not mean you have to wear this mask and machine the rest of your life. Weight loss and healthier eating along with exercise can eliminate the need for the machine. If worn properly and consistently with a good fit, the CPAP machine will have you feeling great all day evvery day. It does take getting used to, so please give it a chance and get excited about feeling better and having more energy to get a 15 min walk in or take the stairs.

 

Good luck,

Sharon Gray, RRT RCP

You would think with all of "us" having the same never ending quest for a better mask that one would be developed.  Maybe we should form a company?  :)



MaZ the purple princess said:

Yep...still feel depressed about it.  I know what you mean, I am continually trying a new mask; each time with extremely high hopes.  I don't want to go into it, but I know what you mean.

MaZ

Jo,

 

      Were one of your surgeries UPPP  ?  I hear that's a painful one, but for some necessary.  I dental applicance can be a wonderful therapy, particularly if it's a 'DNA Appliance' (www.DNAappliance.com)

 

Regards

 

Jo E said:

I was ABSOLUTELY thrilled to finally get the OSA diagnosis. I was born with a number of problems in my respiratory tract that caused OSA. In addition, I developed a deviated septum which can also contribute to OSA. I had complained to PCPs for years about being tired and sleepy all of the time. The most any of them would do was order a thyroid test and say there was nothing wrong when it came back as normal. Then my PCP put me on a muscle relaxant to help with back pain. The situation got so bad that my hubby of 35 years could no longer tolerate my snoring like he had before. He told me that it would wake him up at night. Then he would look over at me and see that i had stopped breathing. This was the first I knew of any such thing happening. I knew exactly what I had. I researched it on the internet and realized that I had been born with it. I went to my PCP and had a dickens of a time getting her to refer me for the test. I finally talked her into the referral. Sleep dr's recommendations: (1) See an ENT and have surgery. (2) CPAP. At the time, I had other serious issues going on, so I chose to begin with CPAP. I also saw an ENT. He ordered some specialized tests and recommended several surgeries for me. (There were 2 other surgeries that he could do, but he recommended that I NOT have those surgeries if I could avoid them; too risky and I wasn't bad enough off to take the risk). I underwent the surgery for one of the other medical issues. Then I began to summon up the courage to go back to the ENT to discuss what he wanted to do. I began undergoing those other surgeries, one at a time. After I recovered from the 3rd surgery, CPAP finally began to work for me.  (Previously, it had only been a small step in the right direction._ After the final surgery, I became CPAP free.

 

To me, the diagnosis was not depressing - it was exciting! I finally had someone believing me when I said I was tired all of the time. I also finally had something I could treat!

 

Look at the diagnosis as being an exciting first step on your new adventure in living! Note how much better things are going to be with treatment than without.

 

One thing to remember is this: There is no one treatment that is best for everyone. CPAP (and related treatments) are safe for everyone. However, that doesn't mean that it is the best treatment for everyone. Weight loss can help if your OSA is related to being overweight. However, my ENT told me that no amount of weight loss would be beneficial in treating my OSA since I am not overweight enough for that even being a contributing factor, let alone the cause of my OSA. For me, surgery was the best option. I had several congenital issues plus one hereditary issue going on. I could not believe how much better my life could be until I had recovered from each surgery. I always thought, "It can't get better than this!" after each surgery. Then it did get better! I am now CPAP-free and hope to stay that way for many years to come.

 

One thing to remember is this, don't assume that if something was best for another person, that it will be best for you. I am thrilled with the results of surgery. However, for some people, surgery is not recommended, it may not even be possible. PAP is a fantastic starting point for everyone. It is the only feasible treatment for some. There are some who have good experience with dental devices, but they are a bad idea for others. (My ENT told me NEVER consider having a dental device - I already had TMJ problems [even tho' I have never experienced pain with it]. A dental device would cause me harm.)

 

You have your diagnosis from a sleep study. Be sure to see an ENT and get a thorough evaluation including a specialized CT scan. The ENT needs all of the information he can get to decide if you have hidden issues that need to be addressed.

 

Although it would see strange to celebrate having OSA, you can celebrate the diagnosis. You can treat it and go about living a "normal" life.  That is something to celebrate.

Jo E, I'm like you. I was thrilled to get a SA diagnosis because I was so exhausted for years and was "tired" of being treated as though my problem was strictly anxiety and/or depression or insomnia. Both a GP and a neurologist, who was good in every way but in this area thought that.

And Ginny, you're right about developing a better mask. Why can't masks be made to order, like a set of false teeth or mouth appliances, for example??? I know there is one mask out there that has a gel insert that can be boiled to fit the face but the name of it escapes me at the moment. Oddly, I've tried every mask but that one. Does anyone know what mask I'm thinking off?

Warren, I am not nearly paying the prices you are for your CPAP supplies.  I would shop around for another supplier.  Those prices are depressing.  I assume you are talking about prices before insurance kicks in?
I have had trouble with doctors telling me I'm depressed.  They keep talking about my flat affect, and I did get to where I wasn't handling stress at all.  I was diagnosed not knowing I had a problem and put on cpap.  I am very compliant, because I didn't know I was having so much trouble breathing until I could all of the sudden breath.  It was great.  But, the fatigue has continued for a year now.  The neurologist thought I had developed narcolepsy.  So she sent me back to the sleep lab.  The sleep doctor said, you do have many components of narcolepsy, but this is from sleep apnea despite effective treatment with cpap.  So they started me on a med specifically for this.  And, celexa, just one of many options.  Well, slowly but surely, my energy is better.  Better, not normal for me.  And, the medication to increase wakefulness during the day, makes me so much more awake, that by 10 I'm zonked and I sleep pretty good most nights.  It is improving.  I find I'm liking other people again.  Can't say I was really depressed, I was just to fatigued to feel any energy to talk or do anything.  P.S.  I'm also insulin dependent.  My A1C jumped up to 9.5.  I had been told cpap would help bring it down.  Addressing the fatigue is helping bring it down.  Now 8.5.  I notice my long term insulin demand has dropped.  Stay away from Cymbalta.  It took my blood sugar to 500.

Pamela, thanks for your contribution.  I'm glad you are having some improvement.

As an ironic comment- the doc says my flat affect is from my psych meds!  CPAP has not affected my life long depression.

Carolyn, please love yourself.  Like you, I recently joined the site (about 5 days ago).  I find it so encouraging.  Like you, I also have Diabetes (Type 2 though) and am insulin dependent.  You're so right about being grateful for what you have.  Don't give up.  This website made me so aware of just how many other people there are with similar life altering circumstances.  In short, you're not alone.  You have so many others  just like you who can identify with you and know just what you're feeling.  You're worth it!  So don't give up.  That's what this site is all about!

C-

You might want to try adding Vitamin B-Complex to your diet. I was having a lot of mood swings and crying alot and a well know sleep apnea researcher suggested this to me. Let me tell you it helped a lot! You should notice changes within a few days, if it is the right solution. Good Luck.

Blessings

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