Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
With many thanks to sophiasmom and others we have all learned a LOT about correlations between OSA and high ICP. She has recommended to all of us to get a sleep study completed and inquire about bi-pap (if I get any of this wrong, someone correct me please). Read through the many posts about sleep studies - they are good and killed with information.
Now, I had a sleep study done about a year and a half ago. I received a letter in the mail saying the results were such a slight OSA the insurance company would not even pay for a part of the machine. Ok, so I read that as not bad, it's slightly there, but barely so I should be ok. I am slightly anemic, I've been slightly anemic for years, it doesn't go up on iron and it doesn't go down more without iron, I'm slightly anemic, no big deal. Until last Wednesday and the report sent to my PCP states Significant events! So my questions abound, is there a mixup? Dr office? Insurance company doing more doctoring than normal? I've got more questions than answers and on a general just bad PTC day that's not cool. Any suggestions?
Thanks,
Kristena
Now, I had a sleep study done about a year and a half ago. I received a letter in the mail saying the results were such a slight OSA the insurance company would not even pay for a part of the machine. Ok, so I read that as not bad, it's slightly there, but barely so I should be ok. I am slightly anemic, I've been slightly anemic for years, it doesn't go up on iron and it doesn't go down more without iron, I'm slightly anemic, no big deal. Until last Wednesday and the report sent to my PCP states Significant events! So my questions abound, is there a mixup? Dr office? Insurance company doing more doctoring than normal? I've got more questions than answers and on a general just bad PTC day that's not cool. Any suggestions?
Thanks,
Kristena
Please insert - several significant events...I swear my brain took a vacation today
Sorry
two points:
ANY OSA is a problem in IIH and must be treated. ALL the docs are clueless about this.
your hemoglobin level is the most important factor in determining oxygen carrying capacity. if you have OSA and are anemic, your tissues will be significantly more starved for oxygen than if you were not anemic. therefore if you drop your oxygen only to 91% and they say it's normal; well, it's probably not.
Well, I had an appointment with my PCP about this crazy hyperventilating nonsense and how I've been waking up gasping for air. She asked me about a sleep study and I told her basically the same as above so she pulled up her report and said it states there were several significant events. At this point she is ordering a new sleep study (which is still to be scheduled).
I guess I just need to plan on requesting a copy of each test report after they are completed.
Thanks again!
Kristena
yes, you really have to be your own advocate. docs just don't pay close enough attention.
I just had a sleep study and they said I had a mild case of OSA but were treating it and I said I wanted bipap instead of cpap and they readily agreed with IIH I should have bipap! I would press further till you get the right answers!
the thing is, with "mild" OSA, usually the oxygen doesn't drop below 90%. and they think that's just fine. I think that's ridiculous. but technically if the O2 doesn't drop lower then you should not suffer tissue hypoxia. most docs think that anything in this ballpark is just causing sleep deprivation and no other significant consequences. I think this is wrong and misguided. I think bad things are happening to the brain outside of sleep deprivation, just from the experience of suffocating all night. even if you don't have IIH, the ICP might go up. it just may not be sustained. there are effects on the sympathetic nervous system. etc.