10 Years of Absolute Misery

[SorryIamNormal]

My story is really long and I'm too tired to explain it properly.  4 sleep studies cpap, autopap, dental sleep device (did nothing, but did fracture my molar costing me thousands of dollars).  Did I mention the sleep device itself was 2k and my insurance paid me 800? 

Sleep quality is HORRIBLE.  I'VE NEVER FELT BETTER--EVER!  Epworth sleep scale can't capture 'sleep quality' because it only asks one question 'do you wake up feeling refreshed?'. 

Sleep Dr's are glorified technicians and are incredibly lazy and ignorant.  If all I want is a summary page printed from Encore I can stay home and do that for free.  'Your numbers are great'.  I AM NOT MY NUMBERS.  I've got to somehow survive another year before I can get MMA Surgery.  Because I did my own research and put myself in front of the surgeon.   

Recently things have gotten really bad.  I've lost a lot of ability to drive.  Spelling is becoming a real problem along with reading and making decisions of any kind.  Not that in 2014 a nurse at a very prestigous hospital in Maryland walks up to me and asks:  'are you ok?'.  NO I'M NOT.  'Well make sure you tell Dr. X how you feel'.  He told me he was 'concerned about my mental health' and ignored my oximeter data, later saying it was 'an anomaly'.  Bought another oximeter same result.  

The best way to explain how I feel is to show you.  So here are pictures over the last ten years.  You can see how DEVASTATINGLY tired I am.  Wake up randomly at night, sometimes with my hair standing straight up.  Been through at least a dozen masks.  DME'S are crooks and lie straight to your face.  Mostly impossible to deal with so I just buy on ebay.  Walked around with permanent marks on my forehead from a FFM and was told this is 'normal'.  Had to wear a hate for around a year. 

All images are after a MINIMUM of 7hrs of sleep and most are 10hrs.  

LINK TO PICTURES:  https://ibb.co/album/fwivov

[DeepBreathing]

That's a depressingly familiar story - I hope we can help you get things right.

First, can you upload a screenshot of your OSCAR daily page so we can see what is going on with the CPAP. Please format the page as per the instructions here: http://www.apneaboard.com/wiki/index.php...ganization

Second, have you eliminated other possible causes of fatigue, including

• clinical depression or other mental health problems,
  
• vitamin or hormone deficiency (testosterone, Vitamin D, thyroid etc),
  
• anaemia
  
• environmental issues such as allergies, noise, bedroom not dark, lumpy mattress (or bed too hard, too soft etc)
  
• other diseases including respiratory disorders, diabetes, heart problems etc etc
  
• sleep hygiene (have a warm shower before bed, no screen time for several hours before bed and definitely no screen time in bed), and so on.
  

I expect you have had at least some of these things tested, but it may be worth a second look.

Finally, can you upload a copy of your latest sleep study, please? We need the charts and tables, not just the written summary. And be sure to erase your name, address, date of birth etc before posting.

Hopefully with some detailed data we can provide you some ideas for getting off this merry-go-round and back to a relatively normal life.

[SorryIamNormal]

Second, have you eliminated other possible causes of fatigue, including

• clinical depression or other mental health problems,
  
• vitamin or hormone deficiency (testosterone, Vitamin D, thyroid etc),
  
• anaemia
  
• environmental issues such as allergies, noise, bedroom not dark, lumpy mattress (or bed too hard, too soft etc)
  
• other diseases including respiratory disorders, diabetes, heart problems etc etc
  
• sleep hygiene (have a warm shower before bed, no screen time for several hours before bed and definitely no screen time in bed), and so on.
  

Sleep hygiene is excellent, compliance is at 99%.  I've missed 2 days in ten years AND I CAN PROVE IT.  I missed 25 days after nasal surgery but I didnt' have a choice.  Been to two different fee-for-service dr's who both charge 400/Hour.  I also live on a fixed income of 20k/yr and will be bankrupt again.  Developed an endocrine disorder from 2012-2019 (went away after nasal surgery from nasal trauma 23years ago).  Use to drink 4-6 liters of gatorade/day.  Had highly elevated URINE creatinine.  NOTICE I SAID URINE.  Average idiot dr doesn't know or understand the difference between intracellular and extracellular water.  Doesn't understand low blood volume (yes it can happen from things OTHER THAN diarrhea and vommitting).  Dr said a large part of the bloodwork 'i have no way of knowing if it is accurate' because creatinine excretion is suppose to be constant and is used as a measure of other values. 

I mention the endocrine NOS because it didn't start until I was on cpap.  Also had literally off the chart saliva cortisol.  As in 15% BEYOND THE MAXIMUM VALUE.  Um... Maybe because I sleep like sh*t!?

Sleep in absolute darkness, have tried 4 different beds, have seen the highest credential psychiatrist I could (he has an online radio show). It's not psychiatric. I do see a therapist and have for 12years every week.

So I give up and I'm getting the bones sawed off my face and then it'll be fixed FOREVER.  Not after spending 15k on braces and dental work.  Even though I need all of this to get surgery none of it is covered under my insurance.  Once I'm fixed I'm going on an absolute mission to discredit cpap and 'THE INDUSTRY'.

[Sleeprider]

I'm not sure MMA surgery is the easiest or best answer. You seem to be using a Philips Respironics System One CPAP at 14 cm, and if your problem is upper airway resistance or flow limitation it is not much of a tool. You seem to be in pretty desperate shape, and yet nothing you have described points to a sleep disordered breathing problem. It sounds like your doctors are satisfied with your CPAP therapy. I understand that doesn't mean much, but without something that points to a problem with the therapy, we have to look at alternative causes for the problems. If we can identify the problem you want to solve, we can probably get there, but the extreme fatigue sounds like something systemic, and the fact you use CPAP does not infer a causal relationship. Have you ever tested for Lyme's, or any of the other conditions listed by Deepbreathing?

[SorryIamNormal]

I tested positive for the iGeneX lyme testing with specific bands, but all that tells you is that you've been exposed to it.  I won't go deep into the Lyme part because it really doesn't matter.  Conventional medical treatment says 'hard to catch easy to treat'.  You will never convince a Dr that accepts any form of insurance to treat in any other manner, and I don't have 10s of thousands of dollars to even attempt it.  I'm also not convinced that Lyme is my problem in any way. 

The problem is Cpap.  I slept far better, for less time (8hrs as opposed to 10), and far more consistently.  I read Stephen Park's book.  You can have terribly disordered sleep breathing and NOT have sleep apnea.  Alot of their values are arbitrary. 

I've already seen the DDS MD at the university medical center.  He told me 'I have a lot to gain' from surgery.  It will fix my open bite, my tmj, and my sleep apnea.  Its 90% effective for sleep apnea and if by some chance I have it after surgery I'm never using a cpap machine again. 

Just because my 'numbers are good' doesn't mean it isn't sleep apnea, sleep disordered breath (which sleep dr's just ignore and only look at apnea), or the cpap machine and mask itself.  The machine is causing more problems than it's solving and I'm done with it.  If this sounds foreign to you please read Dr. Parks book Sleep Interrupted or read his blog.

Cpap is a rigged treatment, just like most drugs.  The real compliance rate is 50% and insurance companies know this.  That's why you have to rent your machine at first.  Cpap is given to treat the apnea/low o2, and by removing the apnea then reduce/remove the arrousal.  What if having a giant mask on your face all night CAUSES AROUSAL?  Is the cpap machine going to catch that?  No, because it can't measure brain waves.

And no a polysmonogram isn't a large enough sample size because it's only one night.  AND anyone who has had one will tell you that you have to sleep like a statue.  Do you sleep like a statue at home?  Of course not.  Average dr isn't smart enough (or doesn't care enough) to know this.  What moron thought that taking one small (6hrs I believe for a polysmo) study for sleep that any human ever walking the planet earth can tell you IS HIGHLY VARIABLE is just another idiot trying to justify their own theories.  Why not?  CPAP PRINTS MONEY!  You are on it for life.

[Sleeprider]

We can work with the sleep apnea part. Grab some screenshots with OSCAR and focus on close-ups of the flow rate graph. If it is flow limitations indicated by a flat inspriatory peak, that is easy to treat. We constantly remind people that come here the numbers are not what matters and can hide a deeper problem.

Lyme is nothing trivial and can manifest in many ways. Mine was neurological (lyme meningitis) and before it was treated, I had facial and abdominal paralysis, speech loss, inability to swallow, double vision, pain, confusion and lots more. Diagnosis was only after a spinal tap revealed the infection in cerebra-spinal fluid, and I was quarantined. It was a pretty horrible experience, but after nearly 30 days of I.V. antibiotics the infection resolved. Symptoms took another year.

[SorryIamNormal]

We can work with the sleep apnea part. Grab some screenshots with OSCAR and focus on close-ups of the flow rate graph.  If it is flow limitations indicated by a flat inspriatory peak, that is easy to treat.  We constantly remind people that come here the numbers are not what matters and can hide a deeper problem.

Lyme is nothing trivial and can manifest in many ways. Mine was neurological (lyme meningitis) and before it was treated, I had facial and abdominal paralysis, speech loss, inability to swallow, double vision, pain, confusion and lots more.  Diagnosis was only after a spinal tap revealed the infection in cerebra-spinal fluid, and I was quarantined.  It was a pretty horrible experience, but after nearly 30 days of I.V. antibiotics the infection resolved. Symptoms took another year.

I've tested negative on the Western Blot but there are theories that the immune system is either too weak to respond or lyme is in another form cyst/biofilm.  Unless you can point me to a Dr who takes Medicare and does something other than Western Blot then it's a mute point.  If you treat in any other way you WILL be run out of town (ask dr gemsek in DC) and kicked off the insurance roster.  Why else have countless books and documentaries been made?  Because its a giant conspiracy and ins doesn't want to pay. 

OSCAR is all new to me and I'm very tired and lacking in cognitive ability.  Here is a screenshot if this helps.  I took another zoomed in on the flow rate.  Then I took another with other values.

[SarcasticDave94]

SorryIamNormal, welcome to the Apnea Board.

When people join Apnea Board, new members have a reason and typically are asking for assistance with CPAP therapy. New members are asked to supply sleep data via OSCAR, which has been asked for of you as well by at least one other member. Without sleep data, we're not going to be able to help you with your CPAP and whatever problems there may be that are disrupting your sleep.

If there's something apnea related that we can help you with, we'd need that info if you would like us to help. Good evening.

PS I see you've posted an OSCAR chart. Good now let's check this data out.

[SorryIamNormal]

More info.  I see the link to the FAQ for setting up OSCAR to take better screenshots.  I just don't know if I can get to that tonight.  But I will provide better data when I can (probably tomorrow).

[SuperSleeper]

Welcome to the forum, SorryIamNormal.  

Allow me to interject and make a few quick observations before others respond further...

Keep in mind that no matter how much help you receive here, members here respond as fellow patients, not as medical professionals, so none of what you receive here should be considered "medical advice" and we always tell folks to consult with their doctor or another medical professional prior to changing anything at all that relates to health, and that includes CPAP.

Many of the statements you make in this thread regarding the industry are indeed true, and I completely agree that many practices of what we jokingly call the "medical mafia" often leave us frustrated and ready to strangle someone.   Been there before myself.   That said, I do believe that as a general rule, CPAP is the "gold standard" that works better than any other treatment for sleep apnea.  Not always or in every case, but in a majority of cases.  Patient compliance is a tough part and I tend to think you're right that compliance rates are pretty poor for CPAP, especially when folks don't have a doctor or DME who's willing to spend the time necessary to answer questions and help folks who are frustrated with adjusting to the treatment.

Folks here can help with CPAP, but I would encourage you to consider the possibility that the issues you mention are not caused by sleep apnea and/or CPAP at all.  Your statements that "The problem is CPAP" and that "Cpap is a rigged treatment" among other comments seem to point to the fact that you may have already decided the cause of your ongoing issues.  I would hope that any help you receive here will be taken with an open mind and with the understanding that the help you need may be outside the scope of this forum and website and not related to CPAP & sleep apnea at all.  If it is indeed CPAP or Sleep Apnea-related, we might be able to help a bit.  But if not, I don't want you to be spinning your wheels with a possible false assumption regarding the root cause of the problem.

Good luck my friend.  I'll let others get back into the conversation now.