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[sickwithapnea17]

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[DoriC]

How many medical/surgical opinions did you get before you underwent this surgery? Wish you luck.

[avi123]

Isn't a Tracheotomy done for other reasons than to treat OSA. It just creates a hole into the throat. What about the other functions that XPAP do by splinting the airway and treating snore and all those events?

[DavidCarolina]

Im sorry you're struggling, life is hard, and you've had a diffficult road.

You should be commended for taking a brave bold move to try to correct a problem. Never
apologize for that. Hindsight is 20/20.

Have you checked into VPAP???????

Are there centrals/periodic breathing or cheynes stokes breathing that can be corrected??????

Im curious to hear your story in more length.

[sickwithapnea17]

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[DavidCarolina]

Well, i really hope that you give it 2 months to see where youre at. Are you taking klonapin for agitation of some kind?

Im surprised the s9 didnt alleviate your claustrophobia because ive noticed that it assists in the breathing and exhalation process.

If the trache doesnt work, can you return to a VPAP ventilator? Even a 3 year old adapt SV will get rid of centrals and apparently
some cheynes stokes breathing.

I'll be praying for you, I know you've taken a bold step, and I know how scary that can be. Hopefully your body is
adjusting to the trache and you'll find your rythm with it soon.

[Todzo]

I tried cpap for several months, bipapst, resmed asv but I kept demasking on resmed and had to use ambien/klonopin to get better effective therapy and sleep. I tried many settings and finally resmed asv with a max ipap of 16-17cm. I tried higher max ps, max ipap of 18-20cm but didn't feel good on them. I have a resmed vpap adapt s9 but it's uncomfortable and I demask with a mirage quattro, fit life mask and need ambien/klonopin to feel more rested and clearer the next day

I finally found a good surgeon to suggest a tracheotomy since it's about 100% cure for OSA and also improves blood gas exchange and lowers breathing effort. it completely bypasses any obstructions you have in your throat/mouth/nose.

I suspect I have central apneas too and sleepyhead recorded several hypopneas and unspecified apnea events. the resmed would get my AHI down to near 0 but I still felt tired, maybe I should have tried it longer. I would demask most nights I used it too, it didn't have a ramp.
well I don't feel great still but other patients tell me that it takes at least a month to feel better and have improvements

If I were you I would do anything I could find to help lower stress. Traditional Chinese medicine has much to offer here. If you can find responsible professional acupressure or foot reflexology - well I found them effective to help with stress.

I do find eucapnic breathing helpful but believe you need to use a pulse oximeter to guide the process and make it safe.

Consider no GMO or rBHTs and eating many kinds of raw veggies a day. No processed foods. This tends to help the microbiome.

Talk with your doctors about [1,2].

[1]: Gilmartin G, McGeehan B, Vigneault K, Daly RW, Manento M, Weiss JW, Thomas RJ.
Treatment of positive airway pressure treatment-associated respiratory instability with enhanced expiratory rebreathing space (EERS).
Source: J Clin Sleep Med. 2010 Dec 15;6(6):529-38. Division of Pulmonary, Critical Care and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.
Link: http://www.ncbi.nlm.nih.gov/pubmed/21206741

[2]: Dynamic CO2 therapy in periodic breathing: a modeling study to determine optimal timing and dosage regimes
Yoseph Mebrate, Keith Willson, Charlotte H. Manisty, Resham Baruah, Jamil Mayet, Alun D. Hughes, Kim H. Parker and Darrel P. Francis
J Appl Physiol 107:696-706, 2009. First published 23 July 2009; doi: 10.1152/japplphysiol.90308.2008
Link: http://www.ncbi.nlm.nih.gov/pubmed/19628721

[sickwithapnea17]

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[Todzo]

trach seems to be a terrible failure for me 3 weeks after the operation. I was even using humidified oxygen at 10cm a lot, but it doesn't seem to have worked for my sleep apnea. it was a lot of pain and suffering and bleeding still. The software, sleepyhead recorded unspecified apneas and hypopneas for me

how can these study therapies help sleep apnea, by lowering stress levels?
I take klonopin because it gives me more restful sleep and I have more energy and clarity when used with asv+oxygen. I have no idea where my sleep apnea is from, I twitch when I fall asleep....

well the trach patient I talked to said that she had immediate relief from sleep apnea after trach so maybe it doesn't work for me and I have centrals. I was in pain and so exhausted after the operation I was debating letting the hole heal and close.
I still feel foggy and I felt better I think on asv+klonopin. somehow it seems the higher asv pressures help keep my O2 normal. I have a resmed s9 vpap adapt but it has no ramp so I find it difficult to use and I demask all the time

The greatest effect is from the maintenance of the carbon dioxide levels is that it helps maintain circulation in and within the brain. Carbon Dioxide dissolved in the blood is a very good circulation promoter and without it things close down quickly.

[sickwithapnea17]

so they used a non vented quattro mask for this study? do you know anyone that has tried this CO2 therapy? there is a drug acetazolamide used for high altitude mountain climbers who experience sleep apnea and it's supposed to regulate CO2 levels, but it has these kidney side effects which may be serious. I got an ASV and had normal O2 levels at the lab, but months on ASV didn't cure me of sleep apnea fatigue and I had to add klonopin to sleep better

I thought that there's some evidence that oxygen supplementation helps central apnea. I seem to feel better sleeping on oxygen but at the lab I had normal O2 on asv alone....

I'm not sure if it is correct that having too high O2 levels causes your brain to stop signalling your body to breathe?

[Todzo]

so they used a non vented quattro mask for this study? do you know anyone that has tried this CO2 therapy? there is a drug acetazolamide used for high altitude mountain climbers who experience sleep apnea and it's supposed to regulate CO2 levels, but it has these kidney side effects which may be serious. I got an ASV and had normal O2 levels at the lab, but months on ASV didn't cure me of sleep apnea fatigue and I had to add klonopin to sleep better

I thought that there's some evidence that oxygen supplementation helps central apnea. I seem to feel better sleeping on oxygen but at the lab I had normal O2 on asv alone....

I'm not sure if it is correct that having too high O2 levels causes your brain to stop signalling your body to breathe?

In EERS they simply move the vent point downstream a bit. A bit of the air is re-breathed and since it is the last bit it is high in CO2 - so it takes little to start helping.

I use EERS during the winter to help stabilize breathing which tends to become unstable due to being near the anniversary of a severe assault upon my person. The extra central nervous system activation seems to increase breathing gain if you will to the point where the CPAP pressure pushes it over the top. EERS seems to keep the large swings from happening. It works well.

We do not know why some people become "locked" in the hyperventilating mode (broken by the arousal or awakening). I know that EERS reduces this tendency consistently.

[VVV]

I had tracheotomy a couple of weeks ago and I'm finding there hasn't been a dramatic improvement in my sleep. I'm even more exhausted than before the surgery and having to take pain meds around the clock like percocet which cause sleep apnea.

Don't expect to feel good yet if you still need pain medicine due to the surgery.

I would give it some more weeks and see if the pain goes away and you can eliminate the pain meds.

After that if you still aren't sleeping well talk to your doctor about another sleep study to see what the problem is.

You did make a brave move and I hope you soon have very good success with it.

[sickwithapnea17]

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[mgaggie]

Its only been a couple of weeks since surgery? For heavens sake, give your body a chance to adjust! Surgery is never a quick fix, you need time to heal.

I'm really curious as to why you chose surgery?

[Todzo]

so EERS is safe and helps sleep? I seem to have some hypopneas, rapid breathing that I notice when I wake up sometimes for years now

I think I was better off before with asv+klonopin. the surgery was traumatic and I've never been this exhausted. I don't have any major heart or brain problems except for a cyst in my clivus so the chances are I have OSA which should be cured by trach, but I'm still a little foggy and not in pain and not sleeping as well as before on asv

The pons (near clivus) is an area of interest in breathing control.

You will need more time to heal from surgery.

I think pursuing TCM and other modes of healing would be good for you - if nothing else - for the distraction.

Have a great week!

Todzo

and yes mention the studies to your doctors