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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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Jay,

 

First, my ENT told me NEVER to use a dental device for my OSA. It would cause me serious problems. The device you link to is a total NO-NO for me. In addition, the link you gave was blocked by my anti-virus program as a known threat. The appliance is harmful to me. The link is harmful to my computer.

 

Yes, my second to last surgery was a UPPP. After I had that surgery, my CPAP finally worked. I had to have another surgery after the UPPP. I was able to leave my CPAP behind after that final surgery. The Mallampati Scale helps determine whether a UPPP will help or not.

 
http://media.mycme.com/documents/20/8_-_mallampati_scale_4845.pdf

 

If your ENT says it won't help you, then it won't help you. As for pain, UPPP surgery is not pleasant. However, everyone has a different tolerance for pain. I have been thru' much worse than the UPPP. I was really freaked about going thru' all of the surgery, but the surgery was so good for me. Each individual's experience is different. The most important factors in the outcome are: (1) if you are a good candidate for the surgery (2) if you have a qualified, highly skilled surgeon (3) if you have realistic expectations of the surgery and of the recovery period (4) if you are willing to carefully and faithfully carry our the pre- and post-operative instructions given to you by the medical professionals.

Jay Polatnick said:

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' 

 

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.

Marcia,

Some time ago I began to thind that PCPs specialize in thyroids. If yours is okay, you can't possibly have anything real wrong with you.

 

They say that people with chronic conditions are more prone to depression. Is that because the chronic condition makes you more prone to have depression or is it because no one (not even the medical professionals) will acknowledge your pain or even attempt to help you deal with it that makes a person more prone to depression?     
Marcia Herman said:

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?

Jo, certainly chronic pain can cause depression just as chronic medical conditions.  If you are having chronic pain ignored or not asknowledged by your health care professional, I recommend a Pain Management Clinic.  I went to one after my arthritis doctor failed to diagnose me correctly and refused to prescribe pain medicine.  He recommended that solution. They did a thorough work up and found several problems causing my pain.  They have kept me comfortable.  They are not there to get you started on heavy painkillers, but will acknowledge your pain and work with you to get relief.  Certainly it is depressing when your doctor cannot find out what is wrong with you and refuses to treat your pain.

I went to pain management b/c of cervical and spinal stenosis. I got Utracet and Lidocaine patches. It helped some but it didn't fix anything. The Ultracet made me think more about being loopy from the drug instead of thinking about the neck and back discomfort. The meds were more of a distraction than a solution in my case.

It seems that lots of fairly common conditions are rarely actually fixed; giving meds and hoping for the best seem to be the treatment nowadays.

Mary Z, you seem to have found a good pain management doc! Right now, I'm getting PT for neck and shoulder pain which at times are so painful I can't sleep even with the machine. He is a great PT and interestingly, he is going blind and sees very little. He does everything by feel. I have to wonder if this makes him more sensitive to physical issues. He was always a spinal specialist though.

I also suffer from severe sleep apnea, depression, chronic hepatitus C along with back ,hip and knee problems. I think its common and and may be more related to the apnea than alot of people think. I am currently seeking a doctor for treatment but alas with no insurance and no job, I'm left to fend for myself. I feel like Im a burden on my family and I think about suicide daily. Im afraid to go to sleep at night..My family does not understand. I spend most days angry for the decisions I made that have led to my unhealthy conditions. If your currently under doctors care I would speak to them and see what if anything they can do for you. Im writing this so you know your not alone.... on a side note I quit smoking and lost 50 lbs. Im workin on living a healthier lifestyle and I will continue to do so for as long as I possibly can ...good luck  

Sleepybob, do you think HCV could have an effect on sleep apnea?  I ask because I have antibodies for HCV, but seemed to have cleared the infection myself- no virus detected in my blood.  This would be very interesting.

I know chronic pain can be the cause of frequent arousals during the night and result in less than a restful nights sleep.

 

 

sleepybob said:

I also suffer from severe sleep apnea, depression, chronic hepatitus C along with back ,hip and knee problems. I think its common and and may be more related to the apnea than alot of people think.

Jo E,

I just came back from a visit with an endocrinologist. My body temp frequently drops to 94 and 95 degrees. I feel like I'm gonna die when then happens so I asked him about it. He told me my thyroid is fine and that I should ask my PCP what he thinks my problem is. I told him my PCP doesn't know and that he told me to ask him! This is scary b/c even I know that the hypothalamus regulates body temp and that's an endocrine issue. This is scary.

There aren't many other endocrinologists in my area so I don't know where else to go!  I hope my PCP can figure it out - with my prompting, apparently. Argh.


Jo E said:

Marcia,

Some time ago I began to thind that PCPs specialize in thyroids. If yours is okay, you can't possibly have anything real wrong with you.

 

They say that people with chronic conditions are more prone to depression. Is that because the chronic condition makes you more prone to have depression or is it because no one (not even the medical professionals) will acknowledge your pain or even attempt to help you deal with it that makes a person more prone to depression?     
Marcia Herman said:

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?

Hi Joe,

 

     Your ENT must be the smartest ENT on the planet, so I wouldn't even consider questioning his/her infallable authority.    And yes, sending out Viruses is my hobby since I've been working with the Department of Defense and as a military veteran.  Remember, if a doctor can't drug it or cut it then it's usually not a valid therapy.

     That being said, I'm happy you've received some sort of relief.

 

Jay

Bob,

 

       Never give up.  Never!   Have you ever perused the 'AmazonHerb.net' website ?  I own a Zero financial interest in this company, but they are one of the handful of natural herbal product companies with independent research.  Many of their herbal formulas have borderline astonishing effects on the immunity system.

http://camu.amazonherb.net/Herbs_Research_Envirozon.aspx

 

Regards,

 

Jay

 

sleepybob said:

I also suffer from severe sleep apnea, depression, chronic hepatitus C along with back ,hip and knee problems. I think its common and and may be more related to the apnea than alot of people think. I am currently seeking a doctor for treatment but alas with no insurance and no job, I'm left to fend for myself. I feel like Im a burden on my family and I think about suicide daily. Im afraid to go to sleep at night..My family does not understand. I spend most days angry for the decisions I made that have led to my unhealthy conditions. If your currently under doctors care I would speak to them and see what if anything they can do for you. Im writing this so you know your not alone.... on a side note I quit smoking and lost 50 lbs. Im workin on living a healthier lifestyle and I will continue to do so for as long as I possibly can ...good luck  
To someone who asked i dont believe the HCV virus directly effects my sleep apnea it does however effect my physical health and especially my mental health> I definately believe that sleep apnea has an overall effect on mental health in general and while I believe my depression is a seperate issue its none the less aggrevated by my difficulties sleeping along with other physical symptoms like aches and pains and liver inflamation.For me its hard to determine which condition is causing which symptom as they share many of the same characteristics
Please don't cry!  I know exactly how you are feeling.  When I first started treatment, I was literally staying up until 4 am because I did not want to put that mask on...I dreaded it.  However, when I began to wake up refreshed and started feeling like a real person again, I realized that I should not fear the machine anymore!  It was not easy...mentally & emotionally.  But I can tell you that it gets easier and that sticking with the treatment is the way to go.  I don't think of it as a negative anymore.  I focus on the fact that I am treating the problem and that all of the horrible things that can happen from sleep apnea WON'T, because I am taking care of myself.  If it makes you feel any better, in my case, I already had been diagnosed with severe anxiety disorder, depression and OCD.  Imagine how it felt to be told that I had yet one more disorder!  That was the last thing I needed!  And I had myself convinced that I was going to die in my sleep because that is how my mind works.  It heads straight for the worst case scenarios no matter what!  Fortunately, I had a great sleep tech who made me realize that nothing terrible would happen and I should just go to sleep!  It's those who don't take care of their sleep apnea that need to fear the worst.  Just remember...you are taking care of yourself.  You will be fine,  And it is very normal to feel depressed, especially when it comes to your health.  I didn't feel better mentally overnight.  It takes time.  Keep doing what you are doing and don't think "Why bother?"  I have said those exact words...I usually say, "What's the point?"  But you need to realize that every moment of life is precious, so do whatever you need to do to be at peace with yourself.  Even if there only a few moments of feeling good right now, that is okay.  More will come with time...One day at a time.  Feel blessed that you are aware of your physical needs and that you have the ability to handle them.  If you feel like being sad right now, then let yourself be sad...because it's okay.  It's all baby steps...But with each day, the steps get bigger and you go further.  You will have the sunny days again.  And so what if you have to wear the mask the rest of your life?  It's making you better...It's enabling you to get back to being yourself again...That's what is most important.  So try to think positive and realize the good things in your life.  I know people say that crap all the time, but it really is true.  Focus on the good person you are and that each day will be a little better.  God Bless You!


Your apnea has an effect on your sleep, your sleep is directly realted to your ability to heal. If you don't sleep you don't heal properly. Ergo your apnea is affecting your body's ability to fight the HCV. Are you on the Hep treatments? I just went through this with my father. It was a tough fight that we won. He was on the meds for almost 2 years. With commitment and determination you could win as well.

Retracted, Corrected, Reposted
sleepybob said:

To someone who asked i dont believe the HCV virus directly effects my sleep apnea it does however effect my physical health and especially my mental health> I definately believe that sleep apnea has an overall effect on mental health in general and while I believe my depression is a seperate issue its none the less aggrevated by my difficulties sleeping along with other physical symptoms like aches and pains and liver inflamation.For me its hard to determine which condition is causing which symptom as they share many of the same characteristics

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