Bearded One wrote:

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.

HAH! This post made me laugh. You obviously dont live in North Carolina or you must have extremely good health insurance. I had all the symptoms of OSA in spades for a decade...even got it formally diagnosed at Duke...and no PCP ever encouraged me to get on CPAP.


Maybe your state has a higher standard regarding medical things than North Carolina. Perhaps your state is more willing to let patients sue doctors and actually win than here in North Carolina. But I can tell you that down here in the sunny, sunny south, things are different.

Fred


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


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

MrsBaddawg wrote:

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.

Doctors need better continuing education regarding sleep apnea. That way, doctors who went to med school and did their residency twenty or more years ago can be brought up to speed on sleep disordered breathing.

IMO, advocating that doctors undergo mandatory continuing education regarding SBD is another thing the ASAA should be doing, if they already  aren't advocating for better SBD continuing education.

Fred


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


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

Vicki wrote:

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

I read your story and it crystallizes what Ive complained of. You  had to almost die before you got treated with CPAP. That is pathetic and unacceptable. You should have been diagnosed at the mild to moderate stages of OSA and treated with CPAP then, not when you were almost dead with severe apnea. I am sorry to hear you have had such an awful time and literally almost died.

You shouldn't have to pass out, fall asleep while driving, fall asleep at work all the time, etc. before doctors will suspect OSA and refer you for a sleep study.  

More people should be getting this thing caught in the mild to moderate stages of OSA and getting it nipped in the bud with CPAP early on.

Fred


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


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

"You shouldn't have to pass out, fall asleep while driving, fall asleep at work all the time, etc. before doctors will suspect OSA and refer you for a sleep study."  


I agree! My PCP would not order a new sleep study because he said I didn't need it, even with all of my symptoms. He just said he had to "hang his hat" on my problem being anxiety. I had to actually get the report of OSA dx from the sleep lab 6 years ago and take it to him before he would even consider SA. He wouldn't even request the report himself because it was a "non-issue". Doctors are taught to recognize the symptoms of so many illnesses during med school, why not sleep disorders???



Last edited by MrsBaddawg on Fri Sep 05, 2008 10:18 pm; edited 1 time in total

ToHellAndBack wrote:

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

This is very sad. Most doctors do not know much about this sleep disorder. So they ignore what they do not know, instead of sending you to someone who does. I did not have this experience. My doc asked me some questions, said you have sleep apnea, I am sending you to a sleep clinc. When he realized that I had centrals, he automaticly sent me to a Neuro sleep doc. So it makes me sad when I see people who are ignored like this.


_________________
Severe Central & Obstructive Sleep disordered breathing
AHI:116.4
Lowest Sat 85% High96.1%
Total Central,Obst,& mixed 190/hr
Out of that total 66 were Hypopneas
IpapMin7 max16 Epap6
Bipap Auto SV
Resmed Mirage Swift II

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.

Hi Paul, you and I are at the same point in our sleep apnea travels.  I'm nervous about having to use a machine, but anxious to get started so I can start feeling better.

I am a little angry about not being diagnosed, mainly because there's evidence that I may have had pediatric apnea and my mom was a nurse, so should have caught on.  Then when the SA caught up with me, my last doctor told me my fatigue was "all in my head" and suggested therapy for anxiety.  He also scolded me for having an "inactive lifestyle".  I just burst into tears - I couldn't have an "active lifestyle" because I was too tired to move!

Thankfully my therapist knew I was suffering from physical problems and not emotional ones.  He pushed me to get a new doctor, and the new doc is great.  He sent me in for a sleep test right away, figuring my chronic colds and vague muscle aches were from lack of restorative, healthy sleep.  I'm kind of excited about this, I hope it works out.

Yes, I am pretty perturb about what happened to me.  And my inept PCP and neurologist were both at "The Scripps Research Institute" in La Jolla, CA.  Those snooty people insist on accentuating the "The" and think of themselves as The Mayo Clinic "of the West Coast.  Pathetic is an understatement.  My PCP was soooo arrogant.  For my OSA, I was finally referred to a pulmonary doc there who I saw one time.  He knew about OSA, however, the mask I used at the time had a hose that would pop off so I used a hose clamp to hold it on.  He was so impressed with the ingenuity that he took a picture of me, but first he asked me if my husband came up with the idea.  The nurse almost couldn't contain her laughter when I coldly told him there was no husband.  Finally, I went absolutely begging back to the independent sleep lab to ask the director (the psychiatrist) to take me on as a patient.  He normally didn't do that.  But he had left Scripps for the reasons described and he knew what I had been through, so he compassionately agreed.

My experience so enraged me that I ended up on the ASAA board and even though my life is incredibly busy (I need about 6 more hours in a day) I spend hours a day trying to keep others from going through what I've gone through.

Vicki


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

And we all thank you, Vicki.  Anger does us no good unless we are able to use it  for change.  This reminds me that I have to have "the talk" with my pulmonologist when I see him wednesday.  I use a large clinic system in my area, the doctors refer to him, then he refers us on to a sleep clinic. He's in a position to see that the front-line medical people screen for SA. I think everyone who sees patients should know the signs, starting with the receptionists and nurses who watch us nap in the waiting rooms!  Virginia


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

I had a really bad night one night and had to go to the ER because it was causing chest pain. The ER doc's had no clue what to do with me. They admited they had no info and were not trained for this type of sleep disorder that it is still tabo to them. That is why it is ignored. And then he was like you do not fit the criteria, I would never have thought you had this condition? He was like you do not have a big neck, even if you are heavy in the chest. I could not help laugh at that comment. But he was like you do not have a lot of weight to lose. I told him that weight usually does not have anything to do with it, infact you gain weight from the condition.

He was shocked on all the info I had on the conditon. Sometimes I think maybe I should go to med school and specialize in spleep med. LOL

But they just rather ignore what they don't understand.


_________________
Severe Central & Obstructive Sleep disordered breathing
AHI:116.4
Lowest Sat 85% High96.1%
Total Central,Obst,& mixed 190/hr
Out of that total 66 were Hypopneas
IpapMin7 max16 Epap6
Bipap Auto SV
Resmed Mirage Swift II

No offense to the guys out there, but I encountered a gender bias. My husband went in and told his doctor that he snores and that his wife, me, thought he had SA. They immediately scheduled a sleep study. From dr. appt. to cpap was less than a month! I told my doctor (same doctor) that my husband says I snore and I also have A, B, C, & D, oh, and by the way I was dx 6 years ago, and he still said it was anxiety! I had to prove the dx! Why was it a legitimate complaint from my husband, but it was anxiety for me???

I live in Canada and was immediately diagnosed when I changed family doctors. However my previous doctors diagnosed that I was depressed and stuck with that diagnoses for years. I think anyone who has a big neck, snores, has high blood pressure, is moody, or is always tired should have a sleep study done. The study I first had was a take home kit and cost $100 with diagnoses. Then I was sent to a sleep lab to confirm the diagnoses and returned a month later with a machine for a pressure setting study, this was done for free.

The biggest tick offs I have face are being told that if I lost weight I would not have sleep apnea. I gained the weight after the symtoms started and I was put on Paxil. I went from 195 to 285lbs in two years.
I have also been told by a doctor that sleep apnea doesn't have any effect on weight. One doctor called me a hypochondriac, and another told me to get to bed earlier.  I have even had family members say to me that they don't get much sleep either, only 6 hours a night, and that I have to stop identifiying with the disease. It goes to show that lack of empathy can come from anywhere. Some people think if you ain't bleeding you ain't hurt I suppose. However my sleep studies showed that I got 30 minutes of level 1, and 4 minutes of level 2 sleep per night. Sadly you aren't allowed to go back and give the doctors that called you a hypochondriac a wedgie.

My syptoms that I told doctors about that they missed. I wake up gasping for air with anxiety. I drench my pillow with sweat. I lose my temper and get very angry. I have headaches after waking everyday. I feel very tired. I am light sensitive. I sweat very easily when I start to excersise. I get up to go to the bathroom four time a night.

Looking back I wonder how the doctors could have been so stupid. But at least I finally found the right doctor who took about 15 seconds to make the correct diagnoses.  

I guess it does depend on the doctor. I only ended up with the doctor I have now because my former doctor got married and moved away. When I was diagnosed 6 years ago, it was because I told her my symptoms and she said, UH-oh, You have sleep apnea, " and ordered a sleep study. Now I have the bull-head the replaced her. IDK why I've had so many prblems with him about SA. He's always listened before...


_________________
"Sleep is the golden chain that ties health and our bodies together."- Thomas Dekker

MrsBaddawg wrote:

" Doctors are taught to recognize the symptoms of so many illnesses during med school, why not sleep disorders???

Because most doctors practicing medicine went to med school and did their residency more than ten years ago. Sleep medicine is a new  branch of medicine.  The American Board of Medical Specialties just recently came out with board certifications for sleep medicine, I believe as  recently as 2007! It truly is a new thing and most doctors just dont seem to be competent to identify probable OSA patients, diagnose them properly and then treat them with CPAP. Also, doctors tend to be down on anything they arent knowledgeable about.

This being said, its NO EXCUSE WHATSOEVER for doctors to not be aggressively treating SBD. Ten or eleven years ago...depending on where you lived...Id give many doctors a "stupidity" excuse for missing OSA. But in 2008? No sir, no excuse.

Are you having to use this PCP as a "gatekeeper" to get CPAP gear and a titration study? If so, I feel for you as I know how much of a bureaucratic hassle that is. Thankfully, I have insurance now where I can just go straight to specialists and "eliminate the middleman," AKA gatekeeper PCP. I think the whole managed care "gatekeeper PCP" thing was a total disaster for medicine.

Fred


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


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

I think other than the  "newness" of sleep apnea and CPAP, the other  factor that makes many doctors so dismissive of OSA symptoms is many symptoms  present STRONGLY as psychiatric. Ive got a Resmed pamphlet on OSA, and it describes the symptoms. "Depression or irritability" are listed, as well as "Restless sleep," "Difficulty concentrating,"  "being excessive tired during the day." Heck...to the conventional medical mind, those symptoms  sound more psychiatric than respiratory or sleep related.

I believe that is a big part of the problem. Until you reach full blown, advance stages of apnea and begin the falling asleep while driving, passing out and falling asleep at work thing, and are almost already dead,  OSA seems  to present itself with a lot of psychiatric symptoms. The lazy doctor prefers prescribing prozac and xanax to referring out for a sleep study and ordering the insurance company to pay for that expensive CPAP gear. Lots of overlap between psychiatric symptoms and mild to moderate OSA, easy to misdiagnose as psych problem. Factor in the huge power the big drug companies have over many doctors these days (Eli Lilly made more money off prozac than any other drug) and you can see how doctors are  likely to write you  off as a headcase than do the hard work of sleep studies and CPAP.

Many of these doctors know about OSA...the problem is many are so insolent and so corrupted by money that they just dont care.

Fred


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


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

ToHellAndBack wrote:

I think other than the  "newness" of sleep apnea and CPAP, the other  factor that makes many doctors so dismissive of OSA symptoms is many symptoms  present STRONGLY as psychiatric. Ive got a Resmed pamphlet on OSA, and it describes the symptoms. "Depression or irritability" are listed, as well as "Restless sleep," "Difficulty concentrating,"  "being excessive tired during the day." Heck...to the conventional medical mind, those symptoms  sound more psychiatric than respiratory or sleep related.

Fred

People that lack sleep are 400 times more likely to become depressed and form anxiety disorders. I have also heard that Sleep Apnea can be related to speech disorders caused by damage in certain areas of the brain. SAYing this I think anyone that is depressed should also be looked at for OSA.

I read somewhere that Sleep Apnea can be effected by Serotonin (5-HT). Cannabis may help with sleep apnea as it can block seritonin which acts in the peripheral nervous system and which exacerbates OSA. I believe there has been a study which found exogenous and endogenous cannabinoids improved sleep apnea.

Since this is pot we can forget about ever having it for a treatment.

Vote Cheech and Chong 08