Question:
I recently had surgery at Stanford for my sleep apnea and it has not helped
so I am awaiting my sleep study next month to see what it says and then the
next surgery. I am saving the trache for last as my wife nor I want it.
I did see the director of the Stanford clinic and he says the cpap is my
problem. He has seen a few cases like mine. Ambien has helped a few which
I tried and it did not work. He thinks GHB might work, it is in clinical
trials at Stanford and is currently awaiting FDA approval for treatment for
sleep disorders.
I started provigil again at a much higher dose with not much success. I am
also trying an antidepressant and awaiting results. I am trying to find a
combination of drugs that might stop any awaitings at night and try them
longer than a month to see if they help.
Answer:
First, let's be sure we are talking apples and apples. As of 10-15 years ago,
there was Social Security Disability (SSD) and another federal program that goes
by the initials SSI. All I remember about SSI is that the "I" stands for income
and you can only get it if you are flat broke, i.e. no assets. I don't know for
sure if it was an independent program or not. I think you had to be on SSD to
get SSI. I was unable to qualify for SSI.
So I don't know what SSDI is!
Second, everything I say here is based on my own experience 10-12 years ago. I
can not speak with certainty today.
Test data is extremly important. I had neuropsych tests, a CTscan, 3 MRIs, a
spectscan, and a PETscan. If I would have had any idea I had OSA, I would have
had my polysomnographic test also. As previously posted by Magesteff, be sure
to get copies of all your doctors records, reports, insurance forms, etc.
Yes. How well I know. I fought that battle for 10+ years. It cost me more
than a year's disability income. And it's unadulterated bull shit! YOU DO NOT
HAVE A MENTAL ILLNESS. JUST BECAUSE YOUR ILLNESS, CALLED A SLEEP DISORDER,
AFFECTS YOUR BRAIN, DOES NOT, DOES NOT, DOES NOT MEAN YOU HAVE A MENTAL ILLNESS.
Take a look through the most recent edition of the Diagnostic and Statistical
Manual of Mental Disorders (DSM). I bought a copy way back when and I have
researched its history at a local hospital medical library. Its origin is the
World Health Organization (WHO)
It contains a section for both psychiatric mental illnesses and neurological
mental illnesses. Insurance companies pay for neurological problems but not
psychiatric ones, probably because a person can't do anything about a
neurological illness. A person may be able to do something about a psychiatric
illness. The psychiatric codes are deadly. The neurological codes are not.
The insurance industry would like everyone to believe that the DSM lists every
mental disorder known to man. It does provide many, the symptoms, and the
associated diagnostic code. I don't think you will find that your SET of
symptoms match any of the mental illnesses listed. Mine certainly didn't.
BE ABSOLUTELY CERTAIN THAT NONE OF YOUR DOCTORS USE A PSYCHIATRIC DIAGNOSTIC
CODE FOR YOU. Unfortunately insurance companies require that a doctor provide a
diagnostic code from the DSM on the insurance form. (This was not the case 40
years ago, pre-DSM era. Doctors described and wrote down what your symptoms
were and the doctor's conclusions.) IF ONE OR MORE OF YOUR DOCTORS HAVE
ALREADY USED SUCH A CODE, DISCUSS CHANGING IT, BASED ON YOUR RESEARCH OF THE
FACTS!!
Just as was finally recognized with me, I suspect you too have a neurological
ILLNESS, perhaps caused by your sleep-disorder, that presents itself withs
psychiatric symptoms. THIS IS NOT A MENTAL ILLNESS.
Because it IS NOT a psychiatric illness and because all of the illnesses in the
DSM are quite specific including the neurological illnesses, there is only one
diagnostic code that fits. I can't remember the number, but the title is
"neurological not otherwise specified."
I actually wrote a letter to my doctors saying, "If you don't know for sure what
the problem is, and you are limited to the diagnostic codes in the DSM, PLEASE
USE A CODE THAT ISN'T DEADLY FOR ME."
This surprises me. Be aware of a couple things here. Based on my own
experience, if they definitely decide that they are going to consider you to
have a mental illness, and they end up paying you for over two years, they will
try to get the excess money back.
In addition, I made a friend at the Social Security office. He told me that, at
that time, they were rejecting every application three times before they were
given any significant attention. Once again persistence may pay off, but the
real point is that it could take you 2 or 3 years. Although, if approved, it
would be retroactive, if you don't have any financial reserves, it can be very,
very difficult.
You may already be aware that there are many psychiatrists, neurologists and
psychologists involved with sleep disorders. I would recommend that you try to
work things out (read: get what you need) with your healthcare providers in the
following order: (1) a neurologist, for the reasons put forth above, (2) a
diplomated neuropsychiatrist, because of the "neuro", (3) a neuropsychologist,
because of the "neuro", (4) a psychiatrist. Obviously if any one of them is
also a sleep doctor, the order might change.
I have gone several days without any need for a nap, which means I haven't
experienced any of my strange yawns either. My cognition has been noticeably
improved. I have been aware of it and so has my wife. I was getting ready to
call my neurodoc but decided to wait a few more days for that also.
My productivity and ability to organize are measures of my cognition. I have
gotten more done in the last few days than I did during all of October and
November.
I go to sleep at 1:00am and set an alarm for 8:30am, 7 1/2 hours. I have always
felt good when I got up, but it's nice not to need to sleep during the day and
to be able to think! I have used my CPAP every nighttime sleep and daytime nap
since I got it (with the exception of a couple of hours the two nights I had
some problems).
Even though I am optimistic, my cognition has recovered from a bad place before.
However, my cognition has never been worse, for a longer period of time, than it
was just before the daytime sleep problems began and I was diagnosed with OSA.
