Relapsing symptoms experience and coping

Hi, newbie here so please excuse any blatant errors ...

I started therapy end of June this year and after 1st week of some adjusting I have been pretty comfortable with the hose and been 100% compliant till date (2.5 months). Overcame leak issues etc in the 1st week. My AHI averages roughly 1 over the past 75 days and never crossed 2. Slept pretty comfortably 7-8 hrs almost everyday after 1st week of therapy. Leaks have rarely been greater that 3.6. I sleep straight through and don't get up for bathroom breaks. My personal experience has been after the 1st week I started feeling progress and felt great in another week or two. There have been some lingering tiredness/grogginess here and there but otherwise felt great especially compared to how I had been prior to the start of the therapy. That makes it almost 2 months of feel good. Now since 2.5 weeks I felt relapsing back to pre-cpap stage and the feeling though a bit different has been persistent. There has been no change as I religiously keep a log of my activities from few months before cpap therapy till date (diet, sleep etc..). I am pretty comfortable so state that I don't have any other changes to stand out and obvious. List that may seem obvious but ruled out for me
- Don't take any medications
- Workout 4 times a week on an average of 45 mins
- I don't wake up (except for going through the sleep cycles) during sleep .. not even bathroom break. If I do wake up that I can't go back to sleep it is somewhat rare and only occurs after at least 5-6 hrs of sleep. Even in those cases I tend to lay down another hr or so
- I am 40, generally healthy (except for excruciating migraines .. more on this on a separate line item) and my annual physical always has been clean as far as I can remember. The only recent issue I had in late 2016 was detected high levels of H.Pylori which was treated and tested negative twice later on.
- My migraines (excruciating ones that last about 12 hrs and usually disappear overnight) have started I would guess 10 or so years ago with being less frequent (2-3 times a year) gradually progressing to every 1-2 times a month prior to start of start of cpap therapy. Since being on hose I haven't had those episodes so there is strong correlation to my underlying sleep issues over the years. I do also have mild headaches that are more frequent (twice I would say to the excruciating ones) symptomatic to the sleep/apnea problems but they subside pretty much in less than an hr with Exedrin. Since the start of the therapy the level of discomfort with these mild headaches has been subsiding again which I believe is helped by cpap therapy. Since I have only been 2.5 months on the therapy am not declaring any victory on either types of headaches because of possible other issues (stress / weather changes etc..) that could come into play
- Right around the time I was diagnosed with OSA, my neuro/sleep doc and my primary care physician ordered the following, all of them resulted being either negative or within normal range(s)
Thyroid levels
Creatine Kinase
SED/ESR for inflamatory diseases
Vitam definicency
72 hr EEG (for possible seizures)
Brain MRI (to detect abnormalities)
Lyme
Auto-immune disorders

After doing a lot of data crunching and analyzing SH charts, the only thing that I could think of (even if by chance) is the pressure setting - my prescribed setting is 10-13 (where it had been mostly) but I have had the setting on 9-13 few days and I can tell from the data the latter feels better.

I met my sleep doc earlier this week to raise my concern and he says based on my AHI numbers, number of hours slept (averaged 7-8 hrs of sleep) everything looks great and to give it more time. I agree with him but was not totally convinced why there symptoms would relapse especially it being consistent for last 2.5 weeks which I have not experienced in the 1st two months where at most I felt a day or 2 groggy in a row. He stated that my feeling is not related to CPAP therapy which I found a bit odd. Also he thinks the change of low pressure setting from 9 to 10 shouldn't have much difference especially considering I have an APAP. He also prescribed Adderall and to take AS NEEDED only to help keep my alert during day. I haven't used it to report the difference.

Since I had been on 10-13 pressure setting for sometime now, I switched to 9-13 yesterday so will report back if I feel the difference

So am really curious to hear any input from others with similar experiences and how they eventually overcome.

I am primarily wanting to know others' experience and not to have my charts analyzed but open to feedback on that front as well so here is some info in that regards- https://imgur.com/a/p5eZS One day chart is included but my daily chart from other days looks very much similar.

I suspect that most likely what you are experiencing is the "honeymoon" thing I mentioned in the other thread.
On paper your software reports are pretty much to die for boring.

Have you ever had hormone levels checked?
Especially if you are male...

Have you ever had a vitamin D level blood test?

Those are long shots..I doubt they are going to be abnormal but you never know until you check things out.
I can't think of anything else at the moment. I never had the honeymoon effect...it took me a long time to feel marked improvement beyond the nocturia and killer headaches going away pretty much immediately...the other stuff took much longer probably complicated by other things that weren't related to sleep apnea.

Maybe some of the others who have had the honeymoon effect and got past it will have some ideas.

Pugsy wrote:I suspect that most likely what you are experiencing is the "honeymoon" thing I mentioned in the other thread.
On paper your software reports are pretty much to die for boring.

Have you ever had hormone levels checked?
Especially if you are male...

Have you ever had a vitamin D level blood test?

Those are long shots..I doubt they are going to be abnormal but you never know until you check things out.
I can't think of anything else at the moment. I never had the honeymoon effect...it took me a long time to feel marked improvement beyond the nocturia and killer headaches going away pretty much immediately...the other stuff took much longer probably complicated by other things that weren't related to sleep apnea.

Maybe some of the others who have had the honeymoon effect and got past it will have some ideas.

Pugsy, For now am leaning on the honeymoon theory until I can correlate to something else OR see positive change from the 1cm pressure change (will give it a week or more)

My Vit D levels are normal and has been tested for. I actually take 1000mg daily supplement as I tend to stay indoors. Didn't list that as medication in early post as it's more preventative but agree it's something to look for.

I am male and don't think the hormone levels are tested specifically as part of the routine annual physical. I did look into my reports and didn't find any related to this but will look more and consider that as a possibly factor.

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.

I know it's theory but the "old / new norm" analogy sounds very rational to me. It also reminds me to keep the sleep schedule tight as I have to admit even though mine is not too off, it's one area where I could always improve on. Few summer weekend vacations that I kept my promise (made prior to OSA discovery) with my kids had threw my schedule off but with schools starting I have one less thing to take care of (pheew). I sincerely hope my brain catches up with the new norm ..

fog.apnea wrote:keep the sleep schedule tight as I have to admit even though mine is not too off, it's one area where I could always improve on.

My sleep schedule is far from perfect but there are things in life that throw us curves so we deal with it the best we can and that's about all anyone can ask.
In my case I have an old and very large dog (big bladder) that if she doesn't get a pee break around 11:30 or so ...I wake up to a lake of pee in the living room floor. I can't bear to make her stay outside...she's old and I guarantee that if I tried I would worry and feel bad and my sleep would be worse anyway. I already feel bad enough putting her water dish up so she can't drink water in the middle of the night.

She's good to tell us she needs to go outside but often I don't wake up...she needs to make a louder fuss but she doesn't.
It is what it is and I do the best I can and I accept it.

I look at it this way...any improvement is better than no improvement and in terms of the cpap side of things I have done the best I can. The other stuff is separate and sometimes out of my control and I don't beat myself up over it. Wouldn't do any good anyway.

After 9 years on CPAP, I wish my chart looked as good as yours. I doubt that reducing your min pressure from 10 to 9 will make any difference. You are on an autoset machine and the machine will up the pressure to whatever is needed anyway.

LSAT wrote:After 9 years on CPAP, I wish my chart looked as good as yours. I doubt that reducing your min pressure from 10 to 9 will make any difference. You are on an autoset machine and the machine will up the pressure to whatever is needed anyway.

I would think that's what apap machine's internal algorithm does but in my experience and with my own device, closer reading of the charts when the min was changed from 8 to 9 to 10 I discovered few things and time will testify the facts. Here are my facts/observations

- My prescribed setting is 10-13 however due to bloating and feeling too much pressure I lowered the setting to 8 and 9 at different times and let the device at that setting for at least a week
- In all scenarios I saw that the max times at pressure stood at between 8.4-8.6 when min setting was at 8. 9-4-9.6 when at 9 and around 10.5 when at 10. In all scenarios my AHI pretty much averaged the same (roughly 1)
- This tells me that it is not a perfect algorithm programmed into the device but what you set it to makes a big difference. I understand the prescription given is based on sleep efficiency and that it is different at different pressures so am not in any denial as to what I have been prescribed but am convinced I need to monitor the progress and data closely and look up to myself also
- I tried to raise this issue to my neuro/sleep doc earlier this week but he didn't buy into it and stated similar to what you have mentioned. So I couldn't take it further as I didn't have the specific charts data handy to prove my point in the limited time I had for my appointment.
- Post appointment I analyzed closely all those days when the min setting was at 8, 9 and 10 respectively and comfortable to state the above to be factual. I will monitor myself over the next few weeks/months to understand better.

In short I believe my min setting should be more 8 than 10 but I am respecting the doc's prescription to leave the setting at 9 (he was ok with 1cm less than the prescribed 10) and later change it down to perhaps 8. I also believe that the home sleep study, overnight sleep studies and doc visits take you to a certain point and some due diligence is patient's responsibility to get the best out of the therapy.

I may have gotten overboard on the response .. but thought I will write down what I have been experiencing so either am corrected on my findings by more experienced folks here OR someone else end up reading has something to chew on if they have similar experience.

fog.apnea wrote:

Pugsy wrote:I suspect that most likely what you are experiencing is the "honeymoon" thing I mentioned in the other thread.
On paper your software reports are pretty much to die for boring.

Have you ever had hormone levels checked?
Especially if you are male...

Have you ever had a vitamin D level blood test?

Those are long shots..I doubt they are going to be abnormal but you never know until you check things out.
I can't think of anything else at the moment. I never had the honeymoon effect...it took me a long time to feel marked improvement beyond the nocturia and killer headaches going away pretty much immediately...the other stuff took much longer probably complicated by other things that weren't related to sleep apnea.

Maybe some of the others who have had the honeymoon effect and got past it will have some ideas.

Pugsy, For now am leaning on the honeymoon theory until I can correlate to something else OR see positive change from the 1cm pressure change (will give it a week or more)

My Vit D levels are normal and has been tested for. I actually take 1000mg daily supplement as I tend to stay indoors. Didn't list that as medication in early post as it's more preventative but agree it's something to look for.

I am male and don't think the hormone levels are tested specifically as part of the routine annual physical. I did look into my reports and didn't find any related to this but will look more and consider that as a possibly factor.

Ahh..I was gonna say that migraines, to me spell hormone imbalance. If you were a female I would say low progesterone = migraine and low progesterone = sleep disturbance, Maybe it works similarly for men....??

Most migraines are NOT caused by hormones, so I wouldn't play doctor until you've learned more about it... they're vascular problems, if anything.

Julie wrote:Most migraines are NOT caused by hormones, so I wouldn't play doctor until you've learned more about it... they're vascular problems, if anything.

Yeah well I saw a hormone specialist for 4 years who had 30+ years of experience and wrote several books on the topic of hormonal imbalance. He told me that low progesterone causes sleep disturbance AND migraines. Maybe you should learn more before you decide to be a keyboard warrior and correct other people who know what they're talking about.

From Livestrong:

Progesterone is a hormone that plays a significant role in menstruation, pregnancy and aging. The chemical form of progesterone, called progestin, is used in birth control pills and, later in life, for hormone replacement therapy. In both sexes, the hormone helps maintain brain, sleep and nerve health. With age, levels naturally decline, which affects a woman’s health in a variety of ways, including reduced skin elasticity and the inability to create new bone. One cause of migraine headaches is a natural drop in progesterone levels.

Headaches and Migraines

Headaches and migraines are common symptoms that occur when progesterone levels fluctuate and bottom out. Women are prone to these symptoms during the menstrual cycle and at ovulation. Hormonal headaches are unpredictable and come on suddenly. They’re especially unpredictable during perimenopause, when the hormone is the most erratic. Women who have previously never had a problem with head pain may start suffering on a regular basis at this point in their lives, according to Marcy Holmes, NP, certified menopause clinician and Women to Women contributor. One way to know for sure if progesterone deficiency is to blame for head pain is by tracking symptoms. Write down when headaches occur along with the start and finish of menses.

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.

xxyzx wrote:

Julie wrote:Most migraines are NOT caused by hormones, so I wouldn't play doctor until you've learned more about it... they're vascular problems, if anything.

====



if you are not a doctor then take your own advice and stop playing one

#yougotowned

DaisySmith wrote:

Julie wrote:Most migraines are NOT caused by hormones, so I wouldn't play doctor until you've learned more about it... they're vascular problems, if anything.

Yeah well I saw a hormone specialist for 4 years who had 30+ years of experience and wrote several books on the topic of hormonal imbalance. He told me that low progesterone causes sleep disturbance AND migraines. Maybe you should learn more before you decide to be a keyboard warrior and correct other people who know what they're talking about.

From Livestrong:

Progesterone is a hormone that plays a significant role in menstruation, pregnancy and aging. The chemical form of progesterone, called progestin, is used in birth control pills and, later in life, for hormone replacement therapy. In both sexes, the hormone helps maintain brain, sleep and nerve health. With age, levels naturally decline, which affects a woman’s health in a variety of ways, including reduced skin elasticity and the inability to create new bone. One cause of migraine headaches is a natural drop in progesterone levels.

Headaches and Migraines

Headaches and migraines are common symptoms that occur when progesterone levels fluctuate and bottom out. Women are prone to these symptoms during the menstrual cycle and at ovulation. Hormonal headaches are unpredictable and come on suddenly. They’re especially unpredictable during perimenopause, when the hormone is the most erratic. Women who have previously never had a problem with head pain may start suffering on a regular basis at this point in their lives, according to Marcy Holmes, NP, certified menopause clinician and Women to Women contributor. One way to know for sure if progesterone deficiency is to blame for head pain is by tracking symptoms. Write down when headaches occur along with the start and finish of menses.

+1

fog.apnea wrote: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.