3 Months on CPAP, still tired despite Dr saying my apnea is controlled

[highwaystar86]

Hey all, it’s been awhile since I updated..

Since then I’ve had vitamin b12 deficiency ruled out, a follow up head MRI that showed no new findings, a negative spinal MRI which helped rule out MS, tons of blood work done and also have been on antidepressants for almost 12 weeks to see if anxiety is the cause of the fatigue, dizziness, and tingling. 

I can almost for sure say that the anxiety was exacerbating my symptoms but not the cause. No regrets taking them though because they have helped my cope with all of this quite a bit. 

But here we are, my sleep is still inconsistent. I can have one morning where I wake up feeling “good”, sustainable energy all day, and then the next I wake up a train wreck. Dizzy, fatigue, legs weak and tingly, brain fog. I can only think of one day the past month where I actually felt great, like I was fully rested. Other than that it’s mediocre at best. More often than not I wake up to burp or wake up in the morning feel bloated and burping so I think there’s definitely some aerophagia going on. 

I have an upcoming appointment with my sleep doctor at the end of July and I don’t even know what will come of it. I need help. I can’t continue to slog through life like this when I know there must be a solution. Whether that’s an auto set machine, maybe a BiPAP that I get properly titrated on. There must be something happening during sleep that is causing this still even with AHI under 1. I’ve been back on the CPAP for over a month to collect the flow limitation data again and also to appease the sleep doctor with “compliance” data. 

I will attach some new data later today

Edit: I also wore an Spo2 sensor for two weeks straight and had no abnormal levels.

[Dormeo]

I can't recall whether this has come up in this thread already, but have you or your doctor considered the possibility that you have hyperventilation syndrome (HVS)? Try googling Nijmegen Questionnaire to find a simple questionnaire often used in diagnosis.

[highwaystar86]

I can't recall whether this has come up in this thread already, but have you or your doctor considered the possibility that you have hyperventilation syndrome (HVS)?  Try googling Nijmegen Questionnaire to find a simple questionnaire often used in diagnosis.

Interesting. I haven’t discussed this with him but looking over it I’m not sure it would make sense for me unless it was exclusively happening during sleep. Meaning, on the days that I wake up and feel good, I don’t then all of a sudden experience all these symptoms later on in the day at some point.

[highwaystar86]

Here is my OSCAR screenshot from last night (0.73 AHI) and the night before (0.37) 
Funny thing is that today I woke up feeling like crap but yesterday I felt better with 1.5 hours less CPAP usage.. 

[StrangerDanger]

Hi there,

I didn't read all 10 Pages but I'm pretty sure what your problem is. I have the same behaviour as you: low AHI, rather high flow limitation and most of the time feeling like crap and some random days are better. Well I'm still trying to find the best settings in hope of finally fixing my problem.
I don't have apnea (went to sleep laboratory, ahi 2.9) but dust mite allergies.

I tried everything to fix my symptoms but nothing really helped for longer periods. My nose congested every night, destroying my sleep and making me feel awful every morning. Fatigue, brain fog, concentration problems etc.
Out of desperation I bought a second hand APAP + hypoallergenic filter (make sure you have one). I believed it must help because I will breath clean air + the pressure keeping my airways open.
And it really helped. After sleeping like 3 hours with it I felt way better than before with 8 hours. More rested, awake, clear thoughts and so on.
Unfortunately I'm still struggling with finding the right mask and have leaks.

I tried full face mask once but I felt terribe the next day. Like before when I slept without CPAP.

I recommend you to try nasal mask even though you have congestion, but you might have to mouth tape. Maybe wait for APAP before taping because it might be risky with your flow limiations / congestion.
But even without mouth taping you probably feel better than with full face mask.

In your last post I noticed you have big leaks. You should try to get them under control. I notice huge differences the lower my leaks are.
You feel worse on the day with lower AHI because you have bigger leaks which disturbes the treatment of your CPAP + AHI is lower because your machine can't detect the apneas because of the leaks.


Anyway I think allergies are the most common cause for congestion. I believe even many people using CPAP or who have UARS are just having allergies.
Please see an ENT and let them test you for allergies. I bet you have dust mite allergy. This would explain everything including your hypopneas.

[DaveL]

StrangerDanger welcome to the forum! And thanks for your post!

I have a ResMed S10 *for her* machine. I'll check and see if there's an anti-allergy filter for it.

[highwaystar86]

Yes, I use the HEPA filters and also have an air purifier running about a foot away from my CPAP machine at night lol. So I think my air should be pretty free of allergens. 

I know from childhood that I am allergic to dust mites, I vacuum the room once a week and wash the sheets once a week as well and use a mattress cover

[DaveL]

Thanks for your note. do you use a central vac or hepa vac? Most common vacs leak like sieves. Suck the pollutants in and blow them out through cracks and leaks...

[highwaystar86]

We have central vac

[hh9797]

Sorry if this has already been answered but with 10 pages of posts and quickly glancing I can not be sure. I assume your doctor has already ruled out the simplest answers that are a fairly common problem that could be a secondary reason for the fatigue? Like for example has the doctor checked your Thyroid hormone levels to make sure it isn't hypothyroidism? It is a simple blood draw and you get results the same day most the time. I assume they probably already checked that but I mean the symptoms you are describing is exactly how I felt when my Thyroid levels were extremely low due to, well, having my Thyroid removed due to cancer. The brain fog and fatigue are both very much associated with the Thyroid and the tingling legs can be associated with a damaged parathyroid glade which is located in the same location as the thyroid. 

I assume that is one of the first things they checked seeing as it is extremely common, but doesn't hurt the check seeing as what you are describing sounds exactly like the year I spent after my thyroidectomy of a few months not being allowed to have any hormone replacement so that I could do the radioactive iodine and then nearly a year to get my hormone levels to where they should be to properly function.  While obviously having no Thyroid is an extreme case compared to just normal hypothyroidism for pretty much that entire first year it didn't matter wither I slept 1 hour or 18 hours I constantly felt like I just finished a 48 hour shift  with no sleep, the brain fog was on some days to the point of being absolutely terrifying and extremely emotionally draining, and while my parathyroid didn't get too damaged during the surgery I did have to take some extra calcium for a few weeks to not have that tingly feeling. At the time I was also a 35M, it has been two years since then, but still point is even though thyroid problems are more common in women, specially older, even a young male can have the same issues with the thyroid.

EDIT: I should note that the reason the thyroid stuff was caught for me was because of the cancer showing up when they were doing a CT of my chest and lower neck when xrays didn't show up anything, my annual TB test for work was negative... well not negative, but not positive, and I had been coughing up blood like every hour for 7 weeks straight, it was caught due to checking for other things, but obviously while cancer would show up in a CT scan hypothyroidism wouldn't and so maybe because you are a younger male maybe they didn't think to check thyroid levels since it is a lot more common of an issue in women than it is in men. So I guess it is possible that is is a very simple answer that could have been overlooked and not checked due to your gender.

Edit 2: If not negative but not positive sounds weird it is because it is weird, the previous 5 years results came back "No evidence of current or previous infection with Mycobacterium tuberculosis" where as that years results came back with "M. tuberculosis infection NOT likely. However, a negative result does not preclude the possibility of M. tuberculosis infection or disease."... basically the numbers had raised from the previous year but not by enough to have a positive result.