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new here: hoping to help others and myself - multime - 03-21-2015
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.
RE: new here: hoping to help others and myself - truetopath - 03-21-2015
Welcome to the board! You'll find a lot of great information here, and best of luck with your health issues.
RE: new here: hoping to help others and myself - OpalRose - 03-21-2015
multime,I am praying that the Doctors will be able to get you on the right machine to help you with your Centrals and also help you with your other health issues too.
In the meantime, stay strong and keep us posted.
OpalRose
RE: new here: hoping to help others and myself - multime - 03-21-2015
Thank you both for the nice words. I'm still waiting for PAs from my HMO for my in home supervised asv study. This isn't the fastest process but my pulm and PCP are submitting tons of docs for approval.
I've got to get some sleep now but when I wake up I will post some of my test results.
Have a great night and thanks again.
RE: new here: hoping to help others and myself - trish6hundred - 03-21-2015
Hi multime,
WELCOME! to the forum.!
I'm sorry to hear that you have had so many health problems.
I sure hope you get the help you need with getting an ASV machine.
Hang in there for more responses to your post and much success to you with your CPAP therapy.
RE: new here: hoping to help others and myself - swaziman - 03-23-2015
All the best for your continued treatment. You have access to a large group of new friends on this forum.
RE: new here: hoping to help others and myself - retired_guy - 03-23-2015
Hi Multi,
Sounds like you've got a basket full of interesting things going on.......
I'm wondering if once they get you stabilized on your ASV machine if that might actually help keep you seizure free as well. In other words, does the seizure cause the CA's or do the CA's cause the seizure? That will interesting for you to find out.
Keep us posted.
By the way, we're very much in favor of lots of sleep, but Coma's are considered going overboard. So I think you should refrain from doing that anymore.
RE: new here: hoping to help others and myself - multime - 03-23-2015
I don't plan to have another coma.
My docs were thinking the same things with the ca and seizure combos. I'm still working on getting the dosage adjusted with keppra. I can't take tegretal because it causes my ast and alt levels to skyrocket up. I'm amazed I can keep track of everything at times. I do feel that I'm much further along the path of getting things resolved compared to before.
RE: new here: hoping to help others and myself - multime - 03-24-2015
Here is an overview of my study results. Images will come soon but I've got to get over this cold first.
June 2013 - in home polysomnography.
Summary: total sleep time was 629 minutes. Review of pulmonary parameters reveals 35 central apneas, eight obstructive apneas, zero mixed apneas and 67 obstructive hypopneas for an elevated apnea plus hypopnea index of 10.5/hour. Arterial oxygen desaturations were present with levels going down below the 85% level. Hypoxaemia was present with a nadir of 82%.
Cardiac rhythm showed both cardiac tachyarrhythmias and bradyarrhythmias associated with sleep disorder breathing events.
RE: new here: hoping to help others and myself - multime - 03-24-2015
In lab titration results. Edited to add date. July 2013.
Total recording time was 421 minutes.
Total sleep time was 235 minutes.
Sleep efficiency was 55.8%.
Total awakenings was 12.
Sleep onset latency was 13 minutes.
Waso= latency 23.5 min, duration 104.5 min, % apt 30.8.
Stage 1= latency 13 min, duration 34 min, %spt 10.0.
Stage 2= latency 28.5 min, duration 201 min, %spt 59.2.
No sleep in all other stages.
1.74 hours supine rdi of 2.87/hour.
1.78 hours left side rdi of 6.17/hour.
0.39 hours right side rdi of 25.53/hour.
17 total obstructive apneas.
2 central apneas.
7 hypopneas.
6.64 events per hour of sleep.
20 total myoclonic events = 5.11/hour of sleep.
EEG waveforms showed significant epileptiform foci however no active seizure was captured. Please refer patient for epilepsy evaluation within 2 weeks.
Min oxygen saturation was 83%.
Desaturations below 90% was 15.
I hope this helps others out to get a feel for the results and what types of issues they look for.