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new here: hoping to help others and myself
@multime - there are times when a little infidel (end Fidel) co2 is helpful to reduce central nervous system related apneas (ie. central apneas).

For the rest of us, this infidel is called end tidal co2, I think it is expressed as EtPco2 or sum such. Literature seems to suggest that for some patients the CNS is not a culprit. Rather, the level of co2 in the lungs is lower than the trigger point that signals brain to order a breath. If your co2 is really low, the brain actually gets the signal interpreted as hyperventilation, an orders a halt in breathing as correction.

Hope you continue to get rest and this recovery will be swift.

Dedicated to QALity sleep.
You'll note I am listed as an Advisory Member. I am honored to be listed as such. See the fine print - Advisory Members as a group provide advice and suggestions to Apnea Board administrators and staff concerning Apnea Board operation and administrative policies. Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.
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Sorry about that spelling error. I don't tend to like these stupid auto correct features.

Everything went smoothly last night. Just waiting for blood work to come back today so they can adjust meds to continue treatment. They put in my central line this morning in the inside part of my upper arm where my bicep is. I have three dongles hanging out.

Overall I'm doing much better but very tired and sleepy most of the time. Thanks for everyones support and have a good finish to your weekend.
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(03-21-2015, 08:16 PM)multime Wrote: I've had a bumpy road within the last year or so. I'm hoping that by giving my story in progress I can help others who might have related issues.

I have tourettes syndrome as a child and adult. Within the last three years I've been diagnosed with sleep apnea, epilepsy and asthma.

My epilepsy is nocturnal in nature. This causes me to have seizures while asleep which make my central sleep apnea worse. I also have obstructive sleep apnea as well.

My last major event resulted in having a major seizure while sleeping. I went into status and over time I kept rebreathing co2. This caused my pulse ox to drop and thus made the seizures worse.

Long story short my father found me and couldn't wake me up. Ems was called and I was put in the ICU on life support. My coma lasted just over one week.

Simply put my docs are working on getting me adaptive servo ventilation for these reasons.

My seizures can result in my fixed cpap setting being too low to keep my airway open.
They found out while I was in the ICU once off the vent and on clap that my clap pressure needed to be much higher when I slept on my left side compared to other positions. They can't just increase my cpap pressure because of the fact that my seizures while sleeping on my non-left side results in me rebreathing co2.

Well that's enough for now as I don't want to overload anyone reading this.

Welcome to the board. Lots of great information can be gathered here. Thank you for sharing your story with us
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You're going to be ok Multi........

You've got a great attitude and lots of folks in your corner.

Keep up the good work.
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Hey Multime! You've got a lot of support but don't fret about your AHIs, ok. They will come down in time as you get yourself fixed up. My sleep study showed 36(!) AHI per hour. So I was waking on average more than twice a minute.

My results this past week are range from 3 down to...0.1! Yep, only one event all night long. (grin). So if it can happen to me, it can happen to you.

The hardest part I think will be getting your epilepsy specialists and the sleep specialists on track together.

Out of curiosity, why are you not on an APAP if you need variations in pressure?
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(03-30-2015, 02:02 PM)trailrider Wrote: Out of curiosity, why are you not on an APAP if you need variations in pressure?

My titration study showed the signs of possible seizures. I still had to follow up with my neuro for the diagnosis after starting treatment.

Once it became obvious that the set CPAP pressure wasn't working my PCP looked at my results again. He noticed that I had zero time in REM sleep during my titration study. He suspected that I was having many CA events at home in REM sleep which my CPAP wasn't taking care of.

I was being setup to get an APAP machine after getting a new sleep study. This got delayed until now because of two hospital stays. The first was 14 days from a TIA which got more complicated from seizures.

The next hospital stay a few months later was caused by a major seizure that resulted in respiratory failure and coma. This hospital stay lasted 23 days.

So to sum things up I haven't had much time to get this sleep study done. They did gather information from the 24/7 eeg monitoring in the ICU plus the vent information that showed many CA events in the ICU. I still need a sleep study because my results most likely will differ while healthy compared to being on life support.

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Well since my last post everything went badly. Long story short I spent almost two weeks in the hospital. The first 8 days in the ICU on a vent. I'm doing great now but I had a heart attack on 3-31 and lucky for me I had the 24/7 nurse. The heart attack was caused by a pulmonary embolism which was treated with TPA.

They had to keep me on a vent and sedated to let my lungs and heart recover. I wasn't awake for any of this so I have no idea what all transpired. I'm getting tired of waking up in hospitals though.

I do feel great now and will have my asv home study soon. I'm looking forward to assisting others on their paths towards recovery from sleep apnea. Thanks for all the help and great advice thus far.

It's great having a large knowledgeable community for such a complex condition.
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Good grief Multi, didn't anyone ever tell you heart attacks can be damaging to your health?

Time for you to quit doing those crazy go nutz things and just get better.
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Hey multime,
I hope your able to keep that 24/7 nurse around!

Let us know how your home study goes and stay well!
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Hi multime,
Good luck with your home study and get better soon.
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