Is there a forum for central sleep apnea patients with Remede implant

Welcome @tncentralap, There is another discussion started by @drwass2 that mentions the Remede device that might be helpful to scan through.
-- Central Sleep Apnea, Anyone try supplemental O2 via nasal canula
https://connect.mayoclinic.org/discussion/central-sleep-apnea-anyone-try-supplemental-o2-via-nasal-canula/
I did find a research article from 2020 about the device that may set your mind at ease.
-- Transvenous phrenic nerve stimulation (The remedē System) shows sustained safety and efficacy through 5 years: https://remede.zoll.com/press-releases/transvenous-phrenic-nerve-stimulation-safety-efficacy/.

It's great to hear you have a good rep from Remede monitoring your device. Are you able to discuss your concerns with the rep?

Our rep has been great but we do not have direct contract with her other than when we see our doctor a few times a year. We have never had any conversation with another patient as there seems to be so few scattered over the world. We were able to speak very briefly to one patient in the waiting room one time but really no time to discuss any issues. The device and our doctors have been great but it requires hours of travel each time the device is adjusted because so few hospitals deal with the implant.

I believe the remede device is programmed to only work when you are sleeping.
Is this correct? can it be make to work all day long.
I think My o2 drops during the day also.

I think it only works when you’re sleeping. Here’s the manufacturer website - https://remede.zoll.com/remede-system/

The one I have is set to come on at bed time and off at normal waking time. I don't think it would work out to keep it on all day as it actually puts an electrical impulse to your frentic nerve that makes your diaphragm move or breath. It takes some getting used to this initially and it is set to come on at a time that you would already be asleep so that you do not fight it. If I get up it will shut off and will wait and delay coming on when I go back to bed. They also give you a safe side that you can turn on which will shut it off in case you are having trouble with it. When you turn away from your safe side, it will gradually come back on. You would need to ask the manufacturer for sure.

correction- phrenic nerve

Thanks for the feedback. I will probably follow up with their invertation to one of their web programs. I assume it is mostly a hard sell, but I would get info.
Right now, Im Ok with my ASV machine but settings are 15 with possible automatic jump up to 24 which is so high it is difficult to get mask not to leak when it jumps to 24. I'm still looking for a "real" diagnosis as to what my lungs are doing. So far its, try this (ex: Bipap) if that doesn't work we try something else. Well, it didn't work for 6 months and actually caused more problems. (Chayes Stokes pattern).
I do have central sleep apnea and I think I also have problems during the daytime. I will work with lung doctor and sleep specialist on it.
So far, 4 complete sleep studies in the clinic and a few lung function tests.

I also have central sleep apnea and tried a bipap for 6 mo. They did a titration sleep study and never could get a great result but still went ahead and ordered the BIPAP.
No change in events per hours. Usually 20-30 with emergent Cheyes-Stokes breathing patterns.
They then changed to an ASV machine and events are below 5 almost all the time. Success?
Even then, the events are mostly hypopneas which seem to be artifacts of the machine trying to prevent the central apneas from occurring.
However, the pressure settings given to me were very high. EPAP 13-15 PS 4-11.
This means that the machine will jump to 24 at times for inspiration.
Very difficult to get a mask that will not leak at 24. If made so tight to not leak at 24, then too tight to really wear the whole night.
I tried setting the pressures very low. EPAP 4-7 PS 3-10 and the events are still low and less than 5. However, my O2 ring shows the oxygenation is not as good. between 90-100 vs 95-100.
Without any machines at all my O2 can go to low 80 and even into the 70's.
Has anyone had success just using supplimental O2 for central sleep apnea?
I've seen doctors on the internet who claim that the apnea just "melts away" sometimes.
I can't seem to convince my doctors to try it.
Is there some good doctors on this site who can help try to diagnose what my problem really is.
I think the part of the lung used for shallow breathing while asleep does not work so good.
The CO2 can transport easily but the O2 doesn't. During one of my sleep studies they did measure the CO2 and it never went up. I think the higher pressure now with my ASV machine helps the O2 transfer just as much as I think a higher concentration with supplimental O2 would help with O2 absorption. \
My whole life I always had problems measuring my O2. Whenever I was in the hospital the monitors would always go off beeping and I would just breath in and out a lot to make it stop.
Without any machines, my O2 rings shows my oxygen cycles form 98-88 and back every 50 seconds of so. It will do this all night even they I am breathing at 15 breaths a minute.
I've seen it drop below 80 for 5 to 20 minutes sometimes.
I have been able to watch the O2 drop, while very relaxed but not asleep, while I am breathing and it keeps going down even though I am breathing about 15 per minute, until it suddenly start to go up, and then after short time will start going down again.
I did get a lung function test which said lungs are OK, but I was wondering is there a lung test where just a small part of the lung, that used for shallow breathing, is tested for function?
My guess as to what is happening is:
The part of the lung used for shallow breathing does not transport O2 well and even though the CO2 can transport out, the O2 does not go in so good. Therefor, normal CO2 feedback system does not kick in, and when the O2 system finally sees the problem is either opens up more alveoli or open blood vessels to transport more blood or some other system kick in to correct the problem. Because the loop gain or feedback system over compensated, you get this oscillation.
I would like an actual diagnosis as to what my body is doing and then decide on what the fix should be. The doctors seem to be in a "try this " and if that doesn't work " try the next thing".
As an engineer I have collected data on this and need medical help.

i have centrel sleep apnea and had a renede device installed huge mistske nothing but a nightmare no supoort they put it in and firget you now i have dead device in my chest i cznt get our