Relapsing symptoms experience and coping

[LSAT]

Thank you for the responses. I have been feeling a better past 2 days but only very little. After some contemplation and reading few other threads, the feel am going through is more like jet lag. I am going to wait out on the new pressure setting few more days and monitor closely how I have been feeling and improving. Also will be focusing more on sleep schedule and workout to ease out on the symptoms.

Active analysis on the hormone suggestion is in progress (against daily log of my health/activities for past few months) and I haven't made up my mind yet on that front. Will take one at a time but for now am able to push myself through one day at a time.

I have recently made some adjustments to my own settings and I've been feeling a little jet lagged myself. I make much tinier adjustments to my min pressure, most recently from 7.4 to 7.6. If I went straight to 8 I think I would definitely feel it. My body gets used to things being a certain way and when I make a change I don't think I sleep as deeply at first. This time is rough for me because I have changed my machine from a "for her" apap mode to straight apap, and I believe the new pressure spikes are causing me to wake up. I am not going to judge my new settings for at least a week.

If you think the change in your min pressure from 7.4 to 8 is excessive, what is your max setting ? And what happens during the night when the machine auto adjusts your pressure to 10 or higher?

[fog.apnea]

Thank you for the responses. I have been feeling a better past 2 days but only very little. After some contemplation and reading few other threads, the feel am going through is more like jet lag. I am going to wait out on the new pressure setting few more days and monitor closely how I have been feeling and improving. Also will be focusing more on sleep schedule and workout to ease out on the symptoms.

Active analysis on the hormone suggestion is in progress (against daily log of my health/activities for past few months) and I haven't made up my mind yet on that front. Will take one at a time but for now am able to push myself through one day at a time.

I have recently made some adjustments to my own settings and I've been feeling a little jet lagged myself. I make much tinier adjustments to my min pressure, most recently from 7.4 to 7.6. If I went straight to 8 I think I would definitely feel it. My body gets used to things being a certain way and when I make a change I don't think I sleep as deeply at first. This time is rough for me because I have changed my machine from a "for her" apap mode to straight apap, and I believe the new pressure spikes are causing me to wake up. I am not going to judge my new settings for at least a week.

AMK, thank you for feedback. I have been feeling better day by day since I started this thread about a week ago but it's SO LITTLE though I can tell. I did change the lower pressure setting from 10 to 9 exactly a week ago but not sure if that is what's making the difference but time will tell. My SH numbers (AHI, resp rate, flow etc..) and my general sleep quality hasn't changed so I have been comfortable with that pressure change. My AHI rarely goes more than 1 regardless of low pressure setting. Strangely the weighted average pressure shifts lower - 9.75 when low setting is 9 and 10.5 when low setting is 10. In both cases the max setting is at 13 which I barely hit and interestingly my 95% level also shifts downwards when low pressure is changed. This finding supports my analysis that I need the minimum to be less than prescribed 10cm H20 pressure which neither my doc agrees nor my sleep study corroborates. I have changed the low setting down to 8 yesterday and decided to leave it there for at least a week and if the SH results (primary indicators like AHI, resp rate, flow etc..) are roughly the same as prior to the change, then I will leave it there and hopefully that will help with relieving some of my jet lagging as well.

I did take Adderall one day (1st time ever) a week ago and ended up with an excruciating migraine that reminded of my pre-cpap migraines (I haven't got such migraines since I started cpap prior to this episode) so I decided to try the Adderall at a later time. And I don't really need it at this time.

One other positive improvement that I have been able to accomplish in the last week or so is that am able to muster energy to workout at least an hr each day. I also almost did a PhD (pun intended) on circadian clock/rhythms and though nothing to point in relation to this thread, it was an eye opening educational experience on the complexity of sleep and subconsciousness. I am an avid reader so it was a good experience either way.

In short after the honeymoon period which ended around 8/21 the way I felt (jet lagging combined with some mild symptoms of drowsiness) has been pretty consistent but I believe it's improving VERY lil by lil so while am going to do some experimentation for now I am just going to ride this out until I stumble on something.

I have my next neuro/sleep doc appt in 2 weeks so trying to jot down questions to discuss for that date. The hormone imbalance suggestion from earlier in the thread is something am definitely going to bring to doc's notice as it wasn't discussed in general with the neuro/sleep doc before. I have very good insurance coverage and also flexible time at my disposal for few weeks so this is a good time for me to rule out any possibilities that is causing my discomfort outside of xpap treatment and/or to fine tune my hose therapy. I will keep my progress updated here as much as I can and any that makes sense. In the mean time I would love to hear more feedback like yours.

[AMK]

One thing I should mention is that I remained exhausted on cpap and Provigil is what gets me through the day. The combination of that med and cpap seems to keep my brain working as well as it can. Your insurance may require a trial with Adderall, which you have done, and you can probably get a prescription for Provigil. It's an expensive drug out of pocket, but my doctor told me that you can get it at Costco, no membership required, for $30 a month. Just wanted to make sure you have that information in case you need it.

I did not have a honeymoon period. What happened with me was that when I left the hospital after my overnight titration study, even though I had been awakened frequently for mask changes, etc, and probably got 3 hours of sleep, my mind had a sharp clarity that I've never experienced before. I was disappointed that I never felt that again even when my own machine started out at the same setting as at the hospital (8). I guess we could call that one honeymoon night.

LSAT, I've had such trouble with apap that after this current trial I am considering setting the machine to a straight cpap pressure to see if I feel better. I do not want to hijack fog's thread however.

[fog.apnea]

One thing I should mention is that I remained exhausted on cpap and Provigil is what gets me through the day. The combination of that med and cpap seems to keep my brain working as well as it can. Your insurance may require a trial with Adderall, which you have done, and you can probably get a prescription for Provigil. It's an expensive drug out of pocket, but my doctor told me that you can get it at Costco, no membership required, for $30 a month. Just wanted to make sure you have that information in case you need it.
Ok thanks for the info.

I did not have a honeymoon period. What happened with me was that when I left the hospital after my overnight titration study, even though I had been awakened frequently for mask changes, etc, and probably got 3 hours of sleep, my mind had a sharp clarity that I've never experienced before. I was disappointed that I never felt that again even when my own machine started out at the same setting as at the hospital (8). I guess we could call that one honeymoon night.
Not sure how long you've had the pap treatment but when I mentioned to my doc (he's both a neuro and sleep specialist) why I would feel 1.5 months of honeymoon (with some ups and downs over a day or two max but overall great feeling 70% of time) after starting treatment and then start relapsing (at the time of visit it was 2 weeks of relapse which was pretty consistent all that time), he didn't have a good answer and I wasn't prepared well to kind of get the max out of that appointment and so the reason for this thread and my own further experimentation etc. I hope to be better prepared for the next appt coming up in couple weeks

[fog.apnea]

Here's my own personal theory on the honeymoon effect....it's just my own theory and I have nothing to back it up.

Remember sleep apnea symptoms sneak up on us slowly and the body sort of slowly adjusts so the untreated way of life or feelings become the new "norm".
Then we get started on cpap and the bulk of our unwanted symptoms are the result of sleep apnea and we are lucky enough to get optimal pressures right away along with good sleep, yada, yada yada. And we have the miracle where we have a remarkable change pretty much overnight.
So the improvement from the old crappy feeling "norm" is pretty remarkable...day and night sort of thing.
As time goes on the good cpap therapy feeling becomes the "new norm" and we gradually adjust to it being the norm and we don't notice the night and day difference as much. The brain tends to forget the old crappy norm so we can't see a big difference as easily.

Maybe other things cloud how we feel a bit too....remember we don't sleep the same each night anyway.

Then finally something will happen where you don't use your cpap for a night. I had it happen about 3 years into therapy when I made a trip and forgot to make sure everything was in the travel bag and at 11 PM I found out there was no long hose and not a darn thing I could do about it on a Friday night on a holiday weekend.
So I "slept" (using the term loosely) for the first time in over 3 years without cpap.
I got a really rude reminder just how bad I used to feel before cpap. I had improved a lot more than I realized.

Thank you for the responses. I have been feeling a better past 2 days but only very little. After some contemplation and reading few other threads, the feel am going through is more like jet lag. I am going to wait out on the new pressure setting few more days and monitor closely how I have been feeling and improving. Also will be focusing more on sleep schedule and workout to ease out on the symptoms.

Active analysis on the hormone suggestion is in progress (against daily log of my health/activities for past few months) and I haven't made up my mind yet on that front. Will take one at a time but for now am able to push myself through one day at a time.

I have recently made some adjustments to my own settings and I've been feeling a little jet lagged myself. I make much tinier adjustments to my min pressure, most recently from 7.4 to 7.6. If I went straight to 8 I think I would definitely feel it. My body gets used to things being a certain way and when I make a change I don't think I sleep as deeply at first. This time is rough for me because I have changed my machine from a "for her" apap mode to straight apap, and I believe the new pressure spikes are causing me to wake up. I am not going to judge my new settings for at least a week.

AMK, thank you for feedback. I have been feeling better day by day since I started this thread about a week ago but it's SO LITTLE though I can tell. I did change the lower pressure setting from 10 to 9 exactly a week ago but not sure if that is what's making the difference but time will tell. My SH numbers (AHI, resp rate, flow etc..) and my general sleep quality hasn't changed so I have been comfortable with that pressure change. My AHI rarely goes more than 1 regardless of low pressure setting. Strangely the weighted average pressure shifts lower - 9.75 when low setting is 9 and 10.5 when low setting is 10. In both cases the max setting is at 13 which I barely hit and interestingly my 95% level also shifts downwards when low pressure is changed. This finding supports my analysis that I need the minimum to be less than prescribed 10cm H20 pressure which neither my doc agrees nor my sleep study corroborates. I have changed the low setting down to 8 yesterday and decided to leave it there for at least a week and if the SH results (primary indicators like AHI, resp rate, flow etc..) are roughly the same as prior to the change, then I will leave it there and hopefully that will help with relieving some of my jet lagging as well.

I did take Adderall one day (1st time ever) a week ago and ended up with an excruciating migraine that reminded of my pre-cpap migraines (I haven't got such migraines since I started cpap prior to this episode) so I decided to try the Adderall at a later time. And I don't really need it at this time.

One other positive improvement that I have been able to accomplish in the last week or so is that am able to muster energy to workout at least an hr each day. I also almost did a PhD (pun intended) on circadian clock/rhythms and though nothing to point in relation to this thread, it was an eye opening educational experience on the complexity of sleep and subconsciousness. I am an avid reader so it was a good experience either way.

In short after the honeymoon period which ended around 8/21 the way I felt (jet lagging combined with some mild symptoms of drowsiness) has been pretty consistent but I believe it's improving VERY lil by lil so while am going to do some experimentation for now I am just going to ride this out until I stumble on something.

I have my next neuro/sleep doc appt in 2 weeks so trying to jot down questions to discuss for that date. The hormone imbalance suggestion from earlier in the thread is something am definitely going to bring to doc's notice as it wasn't discussed in general with the neuro/sleep doc before. I have very good insurance coverage and also flexible time at my disposal for few weeks so this is a good time for me to rule out any possibilities that is causing my discomfort outside of xpap treatment and/or to fine tune my hose therapy. I will keep my progress updated here as much as I can and any that makes sense. In the mean time I would love to hear more feedback like yours.

I wanted to follow up with some feedback on how I coped with this situation with 'positive' results. I seem to be an exception on this but hopefully recording my positive experience here will help someone with similar experience and who stumbles on this thread. Here it goes ..

Since starting the hose therapy in late June, I have recorded 'FEEL' factor for every single day religiously to this date. This FEEL factor was the MOST important indicator for me because my AHI never crossed 1. My prescribed pressure setting was 10-13. There was some miscommunication between my doc and DME and so I left my pressure min/max setting at 8/13 for the 2 weeks as suggested by DME when I first collected my apap machine. Then at 10-13 for about 2 weeks after that miscommunication was cleared. Since adjusting and seeing positive results takes sometime according to conventional wisdom and depending on how once responds to the therapy, I didn't feel like changing the pressure setting much. By this time it was almost a 5 weeks into the therapy. Few things made me change the setting.
1 - I was clearly experiencing Aerophagia
2 - My doc (neuro) was ok to change the setting given the above condition AND also more importantly that my AHI had ALWAYS remained <1 since day 1 of the therapy regardless of pressure setting.

So I ended up changing the lower setting to 8 OR 9 leaving each for at least week or two. My Aerophagia almost disappeared. By now it's almost 2.5 months into therapy. I also started to have more 'FEEL' good days. I was convinced lower pressure setting was fine. This is the time when I experienced the honeymoon period.

Not sure why I had to change setting back to 10-13 despite my Aerophagia situation but two weeks into it that's when my symptoms started to rebound. Note that that at this point I wasn't able to conclude that lower pressure settings were the main factor for FEEL good and not just Aerophagia and neither suspect that it could be the cause for my rebounding symptoms. And it was the time when I started this thread.

Also it was not until few more attempts to again change setting from 8-13, 8-10 and then 9-10 (leaving all for atleat week or two) I noticed a strong correlation between my FEEL good days and the weighted average pressure setting. The max pressure didn't matter to much because no matter what the high number is my reports showed that the average pressure always was .5 to 0.8cm above low pressure setting and I would rarely go 0.5 cms above the weighted average and that too is somewhat linked to SWJ events. So my MAGIC number was 9.5 and with a min/max 9/10.2 I was having >95% of FEEL GOOD days (the Eureka moment) with average pressure coming out between 9.4-9.6. I had to fine tune min/max further to 9.2 / 10 as I noticed that at times I was sensitive to 0.2 to 0.4 cms above my magic weighted average pressure number (this is the reason why I mentioned earlier in this comment that I could be an exception to the pressure). And I was like this for the 2.5 months which gave me all the confidence regarding my findings of sensitivity to small pressure changes as well as the right pressure. I may one day switch to cpap instead of apap mode but that's a trial for another day.

My conclusion is that while I may have experienced some honeymoon days similar to experienced by others but my main contributing factor for having good days during that time was due to falling within the right (weighted) pressure category (given that I had wide range min/max pressure setting). And finding the right pressure was not based on AHI or the sleep study but a close observation of evaluating my data constantly over months. I can't THANK enough many contributors (especially pugsy) for the precious direct and indirect advise that I was able to grasp from this site and helped me reach an important milestone in my hose journey.

[fog.apnea]

Just a follow up in case someone stumbles on this thread and find it helpful.

An year since I last written, I found few episodes of relapsing symptoms (ranging from couple days to 3 weeks) and observed what the causes are in my situation. These relapsing symptoms are not as bad as pre-xpap days but definitely cut down on energy/mood/productivity significant enough to interrupt with the normal quality of life.

- I am sensitive to humidity and/or temperature changes (more prominent during bleak winter days) so I had to readjust the control humidity/temperature setting either in the ambience or the xpap machine to help alleviate the symptoms.
- Internal body clock (circadian rhythms) .. again more prominent in the winter days (shorter day length). I have long commute and a desk/computer job so I tend to start day early and seated at desk before the sunrise and sometime don't see any natural light at all during the week days so light therapy and sleep hygiene (no glaring screens/blue light exposure) an hour or more before bed time sure makes a difference. One episode .. it took me 3 weeks to figure this out.

It's unbelievable after 1.5 yrs of therapy there are still kinks to overcome and understand. Perhaps am an exception ..