Pip,
They can't tell, this was a topic here about 5 yrs ago, our opinions were that it appears those with papilledema seem to have it chronically, but with our member Sophiasmom06 coming on the scene she has set the matter straight, sleep disordered breathing untreated is a big clue if you are one the pts that will continue to suffer.
Additives in food, and everyday products are our biggest enemy. Hopefully by ,me being the guinea pig I will have some better answers for all of us.
Listen, we are all very blessed to have a certain member on board with us, because without her we would all continue to be spun around on the medical sit n spin by uninformed doctors.
Hang in with us Pip, your answers maybe coming sooner than you know.
Lastly, the baro pressure no longer messes me up, that is because of my diet, lifestyle changes.

that doc doesn't sound like his opinion is worth much. he needs to explain to you why he thinks that. I doubt he understands the problem well enough to know, even if he thinks he does. and I do think that until you properly treat your sleep apnea, that you probably won't get a handle on this. and unfortunately, the docs don't know how to diagnose that one properly either. I have a friend I made 3.5 years ago who I'd lost touch with, who recently contacted me to tell me that I was right, that they finally did diagnose her with OSA, 3 years after I told her it was a problem. her IIH is better though, from going gluten free/low sodium. but she is in her 20s. after age 40, I think that OSA must be treated or you will continue to spiral. that is just what I have witnessed.

Thank you, I didn't think he could know honestly. I have had 2 sleep studies this year and I don't have sleep apnea or any sleep disorders. I do have papilledema so I have prepared myself to be in this for the long hall.

The only thing I have not done is clean up my food \ additives. I force myself to eat now due to meds and have lost over 30 pounds since Sept and could probably lose about 20 more at the most. I do need to clean it up! It seems like a lot of work as I have ready Mary's old posts on this.

Sorry for my unawareness but what is OSA?

Thank you both, I am finding this is the only place I can get answers. I wish some of the older members were still here to help but I'm grateful for those who are. I really appreciate it. This is overwhelming when it's new and not much information is out there.

OSA is obstructive sleep apnea

Pip;
look at your sleep studies and tell me: what is your lowest oxygen saturation for the nights you were tested? how many arousals per hour did you have? how much time did you spend in REM sleep and deep sleep? what was your AHI in REM, and in supine sleep, not the final averaged out AHI?

keep in mind that a "normal" AHI for a child is less than 1 apnea/hypopnea per hour. for adults they say we are normal if that is under 5. so by definition, they say that it's "OK" for an adult to hypoventilate a little bit. well also keep in mind that for someone with abnormal CSF compliance, that ANY hypoventilation can raise ICP. just sit there right now and hold your breath and tell me that it doesn't make your head feel funny. this is why I advocate for zero hypoventilation for people with IIH. I don't think that we can be scored as normal by the same criteria used for non-IIH adults, because any hypoventilation can cause symptoms due to elevated ICP. I don't believe that this is tolerable. that is why I suspect that your sleep studies were improperly interpreted.

That is probably true as when I had them it was before the PTC issues began. I only woke up one time. I was pretty much just told I was normal and did not have sleep apnea and was only aroused awake one time, but I did not see any details honestly.

Okay, looks like I will be asking my doctor to refer me for another sleep study and I will write these questions down so they can see what my expectations are for test results. I really appreciate it! Thank you so much!

before you get a new study, get the detailed sleep study report on the prior studies. I routinely see patients told they don't have OSA but when I look at the actual study there are a lot of signs that the OSA was missed. if this is the case, then repeating a study at the same lab with the same doctor reading it is not going to be helpful.

You also want to look at low your SAO2 (blood oxygen levels) are going. As Sophia's Mom notes, please look at AHI in both REM and when in supine position.

For adults not peds: AHI means Apnea/Hypopnea index (number of events per hour of sleep). Apnea is cessation of breath while hypopnea is partial obstruction of the airway w/ decreased flow and a 4% or greater decrease in SAO2. Hypopnea is just as serious as apnea because it cause oxygen desaturation and fragments sleep.
On report there should also be a RDI (respiratory disturbance index ) listed which includes RERAs (respiratory effort related arousals). RERA scoring rules are a decrease in flow w/ an associated arousal from sleep and less than 4% decrease (remember 4% or > can be scored as hypopnea).

The breakdown AHI and RDI are driven by insurance which does not want to pay for treatment (such as CPAP) w/ RERAs calculated in.

My best advice for any sufferer of IIH is go to an AASM (American Academy of Sleep Medicine) accredited Sleep Lab. Preferably at a teaching hospital. Beforehand, make an appt w/ the medical director for full medical history review/ referral and follow up after the study.

In addition, just because insurance companies may not want to pay for treatment of AHI less than 5/hr or an elevated RDI, your dr can write a letter of medical necessity and advocate for you.

Thank you for the additional information on the sleep study and what I need to ask for. I made an appointment to see my doctor on Friday so I will ask for a letter in case I need it. I will do anything I need too. If there is anything I can do to lessen these symptoms I will. I had a really good week and then out of the blue the PTC symptoms hit me last night and I had a bad day.

My mom and I had a bunch of plans today, but thank goodness she has been the most supportive and understanding on this. We still did a few things but not what we had originally planned and I got a few extra hugs! :)