I have been reading a lot about various people being angry they have been diagnosed  with OSA and must use CPAP gear. However, are there many people who are angry as hell because it took them years to get put on CPAP? Angry  they were maybe ignored because they "just" had mild or moderate OSA? Angry that they were treated by psychiatry or psychology for symptoms that looked like depression or anxiety or hard to treat high blood pressure, but  most symptoms went away  after CPAP treatment?

I fit into this category. Took ten years to get a firm OSA diagosis, even though  I had a "mild" OSA diagnosis in 2000, but  was ignored because I didnt have severe EDS, had uncooperative insurance and an uncooperative gatekeeper primary care physician at the time.

I think those who dont get treated for whatever reason, should be angry. If I had received treatment in 2000, my life would be vastly better now in 2008 than it is now.

Fred


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"We don't need socialized medicine, what we need is insurance reform."


Resmed S8 Autoset Vantage, HumidAire 3i, Resmed Quattro ffmask

I understand the frustrations of not getting a diagnosis that others accept as legitamate and consequently not getting treatment and in the meantime eperiencing the negative affects of apnea on your life.

However, I also know that anger and vengence only make you miserable and make other people not want to be around you.  It is emotionally and physically draining.....and depressing.

I prefer to focus on being grateful for having a diagnosis now, of having the opportunity to pursue treatment, and of having the affirmation of knowing that there is a valid, physical, involuntary reason for these symptoms (disabling daytime fatigue/sleepiness).

I guess it goes back to the old saying of seeing the glass 1/2 empty, or 1/2 full.  I have a tendency for depression so  I want to avoid any pattern of thinking that takes me in that direction.  I'm grateful for the dr who took the time to listen, evaluate, communicate, and be concerned.  I refuse to loose that gift by dwelling on past mistakes of others and self.  

I hope you can embrace the present and forget the past.

My feelings at this point, after having just been diagnosed, are more of denial that I actually have this issue mixed with a tiny pinch of joy that I  now know what is going on.

For me, the next step is to get a machine and get started with treatment. I'm tired (most of us with untreated apnea are) of being tired most of the time, being of low energy and being able to fall asleep in front of the tv so very quickly in the evenings.

I have had OSA for more than 20 years and I have only been on Bipap for 6 months now. I am bipolar and that hid the tired feelings and the rest of the symtoms. So for only the last 2 years I have been tired. If it wasn't for my chest hurting I would of never had a sleep study. And I still would be untreated today. The only symptom I had was being tired and I thought that was from working hard.


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Respironics M Series BiPAP Plus with BiFlex, Heated Humidifier
Resmed Ultra Mirage II Nasal Mask with Headgear
Pressure @ 6/11

Paul56 wrote:

My feelings at this point, after having just been diagnosed, are more of denial that I actually have this issue mixed with a tiny pinch of joy that I  now know what is going on.

For me, the next step is to get a machine and get started with treatment. I'm tired (most of us with untreated apnea are) of being tired most of the time, being of low energy and being able to fall asleep in front of the tv so very quickly in the evenings.

I'm still as tired as I was before my Bipap use started., I am going for another sleep study.


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Respironics M Series BiPAP Plus with BiFlex, Heated Humidifier
Resmed Ultra Mirage II Nasal Mask with Headgear
Pressure @ 6/11

Anger is one thing, vengience quite another.  I'm angry about my symptoms being ignored by the health care community for 10 years or more, but I'd rather put the anger to good use by educating the professionals than stewing over it.  Put your energy into helping others get treated, "Vengience is mine, sayeth the Lord". That's a good philosophy, even if you don't believe in a God.  Virginia


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Resmed elite , 17, mirage quattro ff . 25 + years of untreated OSA

I see no reason for me to be angry, even though it was something like 30 years from the first time my mom took me to a doctor for the classic symptoms of sleep apnea until I was diagnosed with severe sleep apnea.  None of the doctors up until that time knew anything about OSA, and I had to self-refer myself to a sleep specialist in order to get examined and diagnosed.  Luckily I had great insurance that allowed me to go directly to a specialist.

I had a Stress Test, Heart Cath, got put on Zoloft, Sent to a nerologists (spelling ?), had every blood test known to man, complained for years about my muscles hurting, only to suggest to my doctor myself to have a sleep study done.  Mine was so bad that my pressure rating is set to 18.  Most family doctors want to write off Sleep Apnea symptoms to other possibilities such as nerves, overworked, emotional problems, or something an an anxiety drug will treat.  Most family doctors just do not know nor should they be blamed for not knowing.  I good source of information is always the Internet.  That how I finally came to the conclusion to have the Sleep Study done.  BEWARE:  The Internet can also send you to wild conclusions to everything from you have cancer to something that you can't pronounce, so just use some common sense.  I wish I had know eariler too.  It would have gave me back two years of my life when I suffered through each and every day.

laynei wrote:

  Most family doctors just do not know nor should they be blamed for not knowing.  

I disagree with you here. Family doctors are usually the doctors most patients have the most contact with. Family doctors have a responsibility to look out  for your overall health and these days, OSA is part of that. There is no excuse for family doctors to not know...many do know but many collaborate  with managed care insurance and tell patients "hey, just lose  some weight and the OSA wont matter anymore." BULL!

As far as not being blamed for not  knowing, I disagree again. Family doctors are supposed to keep their skills and knowledge up to date via continuing education. Ditto for Internal medicine physicians. There is no excuse for a primary care doctor to not know about the dangers of OSA or the symptoms in this day and age. Ten years ago? Id give many an excuse for being stupid. But not today...not even five years ago.

I guess  the bottom line is many primary care doctors just dont  give a flip about their patients...just keep that insurance money coming in buddy.  

Fred


_________________
"We don't need socialized medicine, what we need is insurance reform."


Resmed S8 Autoset Vantage, HumidAire 3i, Resmed Quattro ffmask

This is due for some serious updating, I wrote it 4 years ago, but here is my story.  Read some of the other ones (Harley's is pretty extreme) while you are there.

The doctor who runs the sleep lab, and of course has a specialty and accreditation in sleep disorders, is an amazing, knowledgable, compassionate man whose primary specialty is psychiatry.  As you will see my PCP was a dismissive !@#$ also and it was my psychiatrist who push for a sleep study and who actually saved my life.

Personal Stories

laynei, the severity of your apnea is not related to your pressure it is you Apnea/Hypoxia Index, or AHI which is the events/hour.  You can have a very low AHI and require a pressure like yours to open your airway or vice versa.  Right now, my AHI is around 114, but my pressure is 9 cmH2O.

Vicki



Last edited by Vicki on Fri Sep 05, 2008 3:02 am; edited 3 times in total
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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Within the past ten or twelve years, any PCP should be aware of sleep apnea and should know when to refer a patient to a sleep specialist.

They should, but they don't.  That is why the ASAA is so important.  And it is why it is important that we, as OSA patients, do our best to rid our health care providers of their ignorance.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

A lot of good responses.   One reply was about my RHI.  I don't know a number, but I was classified as severe by my doctor.  As for Doctors not knowing, I think most doctors have the attitude of give you an antibiotic and see if that clears it up. They should know, but they don't.  The subsitute for me was to put me on Zoloft and do a heart cath because of my chest pain.  I do not get nearly as tired as I did, but I have been unable to ditch the body soreness or the chest pain.  It may not be related to the apnea, but the symptoms of tiredness, chest pain, and body soreness all showed up in the same year.  It took two years of just about every test known to man before my apnea was identified.   The forum seems to have a lot of good information on it. I wonder if many of you do suffer from the body aches and if it is related.  I would think that the body going without oxygen for short periods of time for years could cause these symptoms, but my problem is why are these two symptoms not going away.  I am  47, male, and a computer programmer and spent many hours a day at my computer.  My dad has Apnea, but only experienced the tiredness, not the other two.  I am wondering what this could be.  Can someone tell me if these symtoms are part of apnea and how I can them them to go away.  I have been using CPAP for some 6 - 8 months, but only got consistant in the last 4 months.  I just could not wear it all night before that.  I also ocassiionally take Ambien to help me sleep, but I wake up the next morning to find I have removed the mask and can't remember taking it off.  Seems to be that the Ambien allows you to do things that you do not remember.  I truely want a life without these symtoms and I thought the CPAP would get rid of them.  I often wonder if permanent nero damage can be done when the body has experiencing apnea events for years without treatment.  I have heard about areas of the brain being affecting by this, but only limited information about it on the internet.  Thanks for all the responses, but reader Fred should not blame doctors for not knowing it all.  Like another reader said, this is what this forum is for: information.  I know I went to four years of college and can program in many different languages, but I do not know it all concerning computer systems, so family doctors will not understood and be able to diagnose every thing that can go wrong with the human body, but I do agree that Sleep Apnea is something that is being understood better every day.   I am a little sore about having this for years without a proper diagnosis, but I want to more understanding what I need to go going forward with my present symptoms than dwell on the issue of if my doctor should have done a better job or not.  I think that is what most Apnea patients want.  Any information would be helpful.

Exactly. That's what apnea patients want. So now that you know more, your doctor should learn more too so he doesn't make the same mistakes with the next apnea sufferer. You may have to be the one to educate him, even if it's just pointing him in the direction of ASAA.

laynei,

If you go to the thread towards the top of this section, you will see a "Cardiovascular and Metabolic Effects of OSA" post.  There are some articles there on neurological damage due to OSA.

Many people have Fibromyalgia-like symptoms with untreated OSA if that is the kind of pain you are talking about.  In fact, many people with Fibromyalgia probably have undiagnosed OSA.  My "Fibromyalgia" was so severe that I collapsed from the pain and was taken to an urgent care.  When I began CPAP therapy, my symptoms gradually subsided over the course of a few months and 9 years later, they have never returned.

Vicki


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That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.