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4variety

4variety
Joined Dec 2019
4variety
Joined Dec 2019

Hi SoTired,

first off, I'm very sorry to hear what you're going through. It sounds like a lot to deal with and you must be quite frustrated by now. I can relate to CPAP intolerance. I tried using it off-and-on for three years, though I couldnt find settings that worked for me, so I abandoned it altogether. For your information, I have UARS, after being misdiagnosed with mild OSA.

I have spent A LOT of time researching alternatives to cpap and familiarizing myself with the patterns of treatment response by sufferers of oxygen-related sleep disorders, and the first thing I would like to tell you is that you're not alone in the situation of being unable to tolerate CPAP. It is not your fault, and CPAP intolerance is a common theme in the sleep-apnea community. Do not beat yourself up for being unable to adapt to its unnatural feeling.

The second thing I'll say is that, from my personal experience, most doctors have very little to no understanding of sleep apnea, and I live in an area of the world where they're lionized and regarded as top quality. It has been an absolute horror show to get to the point of treatment that I'm at because of their ignorance. This sounds like I'm just ripe with vitriol, but it's simply the truth. For example, it took me 5 times of going in to the clinic explaining that I think I have sleep apnea before I finally was prescribed a sleep study. They would just tell me I was too young/too healthy, then send me on my way with sleep-medication prescriptions. Anyways, I dont want to go too far into the weeds here, but my point is that sleep apnea is rapidly evolving science, and, from my experience, doctors have on more than one occasion been misinformed/unhelpful/narrow in their thinking, etc.

The third thing I will say is that it's possible to desensitize your gag reflex. I know a sleep dentist who has helped patients overcome such gag reflexes, from minor to severe cases. Sometimes it took months, but the success rate is very good.

I wish to help you as much as possible, so please tell me a little bit more about your profile. What's your AHI? UARS or OSA? What part of your anatomy do you think is most responsible for your reduced airway? Do you typically breathe through your nose or mouth?

My final comment is that I encourage you to think of your case as an isolated one. There is an immeasurable amount of variance for the reasons people suffer from oxygen-related sleep disorders. The trick here in my opinion is not copying what worked for someone else but in finding what customized treatment fits your specific case. Dont give up on yourself, I'm here for you!

I have been able to deal with my fatigue, mainly be discontinuing my use of CPAP. About twenty days ago, something dawned on me. I had not tried sleeping without some form of treatment for about three years. That is, for three years I had always either used a CPAP or an MAD. In addition, I started reading a lot about iatrogenics (when treatment causes more harm than benefits), and thinking back to what my sleep specialist asked me during consultation: "how much of this do you think may be in your head?". The importance of that question is to remind you that there is almost always a psychological factor at play in the experience of any given health complication, and OSA is not exempt. So, I started thinking about how I started getting involved with OSA treatment, what led me there and why. It became clear to me in retrospect that there was certainly a lot of anxiety present during the days leading up to me receiving my first mode of treatment. This is all to say that, well, I do have OSA, but perhaps it is more tolerable than I have been telling myself over the past few years, and, importantly, there are other things I have been able to do to help mitigate the severity of my symptoms but also the degree to which OSA manifests itself.

Somethings that have helped me out: 1) One of the first places that your body deposits fat is the base of your tongue, so being even just a few pound overweight can worsen OSA. 2) Avoiding inflammatory foods, particularly closer to bedtime, has proven helpful. 3) Ensuring clear nasal passages to maximize nasal patency. We are supposed to breathe through our noses, except when we need more volume, such as during exercise, so naturally breathing through your mouth typically leads to worse OSA. Pay close attention to your nasal congestion during the next time you eat something say high in sugar or fat or dairy. I think you will find a noticeable difference/response. Identify your allergens and avoid them. 4) Positional therapy. Meaning, OSA is typically less severe when sleeping on your side, and sometimes there is even a better side to sleep on (left vs right), due to the asymmetries in your passages. 5) Exercise in general. Think about OSA for a second, your brain/body doesnt get enough oxygen, so compensatory responses come into play. For example, heart rate increases, respiratory rate increases, mouth opens, etc. Optimizing your resting heart rate and your oxygen-delivery efficiency will benefit you. 6) Buteko breathing method (let me know if you have trouble finding this). Essentially, there are ways to breathe that are ideal for avoiding OSA, and the good thing is they can be trained into you. 7) One happy medium I found was not wearing the CPAP for the first half of the night, and then putting it on for the second half. This helped reduce the feelings of fatigue when using CPAP, making for a decent sleep.

So, where am I at? Well, I'm waiting to see a second ENT to hear their opinion on me receiving a less-invasive surgery, such as trimming some of my soft tissues. Also, there is a model of a MAD that I would like to try out that I've created a post about in this forum. It's call Oventus. In the meantime, I'm continuing to exercise to reduce my weight. I've been sleeping very well, though a few bumpy nights here and there.

Hey Tjack. I'm a 27 year-old who was diagnosed with mild obstructive sleep apnea. A level-three study that included sleeping on my back showed an AHI of 7.8, and a level-one study that included me sleeping on my back showed an RDI of 4.2, but I wore a MAD. I'm healthy, skinny, and physically active.

I tried wearing CPAP for about three years, and I tinkered with settings (i.e. pressures, ramp, humidity, etc), masks (i.e. nasal vs full-face), my diet, my level/types of exercise, and overall sleep hygiene habits. I tried nasal dilators, CBD oil, sleeping pills, nasal steroids, and even lavender oil. I've also spent countless hours reading clinical literature, reading through sleep forums such as these, and even recording my own personal sleep data to analyse. Throughout the entire trial period of three years, I was still experiencing the same exact level of fatigue when wearing the CPAP by the end. I spoke with Ear-Nose-Throat doctors, respirologist sleep specialists, multiple general practitioners, and my family doctor. No one had any answers to the question of why do I feel fatigued (more tired than usual) when I wear the CPAP?

I hope I haven't pushed you to lose hope, but I just want to be open with you and perhaps help you avoid some of what I've gone through.

The first thing I would like to say is that there is data that indicates that it may take some time to "catch up on sleep" after experiencing untreated sleep apnea, and two weeks of CPAP isn't conclusive. Meaning, you may be playing catch up still, which explains your feelings of fatigue.

Second, when I spoke to my sleep specialist regarding the fatigue I feel after a night of wearing CPAP, he said to me that it's probably because the CPAP is doing more disturbing than helping, as I only have mild sleep apnea. I realize that is vague, but essentially he didn't have an answer (nor does anyone else insofar as I have looked), but he said that it is something he sees in patients from time to time.

Third, there is research demonstrating that CPAP for mild-sleep-apnea patients is often ineffective.

Now, with all that said, there are other options available, and there are small changes to lifestyle/sleep hygiene that can also go a long way in improving your quality of sleep/lowering your AHI/RDI. And, as mentioned before, you're too early on in the CPAP trial to come to any conclusions regarding your compatibility with CPAP as a treatment, so give it some more time and try working with your sleep therapist. The pressure just might be too high or you may be acclimating to the disturbances that CPAP engenders or nasal patency may be poor. There are so many angles to work from, and I'm assuming many of those are still unexplored by you. Sleep-apnea treatment is very individualized. There's no one-size-fits-all treatment plan out there, so start tinkering with the variables, and feel free to post here whenever you're dealing with unanswered questions.

Hi Sierra! Yes, there is a sleep doctor involved. At this point in our investigation he has scheduled me for a second level-one sleep study, which I will be doing in about 10 days. In addition, I have been referred to an ENT to discuss the possibility of improving nasal patency or removing soft tissues.

Those were the thoughts of my sleep doctor as well, although he was not the one to assign me the MAD (the MAD was assigned by a dentist with training in sleep medicine).The only other sleep study I have done was a level-three sleep study, which concluded with an AHI of 7.8 (without treatment).

Yes, I know who you are speaking of, and I'm hoping they stop by haha.

I've decided to give the MAD a better/fairer try than I had previously given it. So far I've been wearing it for about 9 days, and I'm finding it more tolerable than I've ever considered it in the past. Using pillows for elevation seem to help as well, but I'm just theorizing. I record myself sleeping, and during small periods throughout the night I have a light snore, but I'm usually quiet, which was also noted on my level-one sleep study above, for what that's worth. I wake up still, one to three times, which is frustrating and annoying, but I would say things are getting better (or as much as one could say they are in the small span of 9 days). Next thing to get is a pulse oximeter so that I can start compiling data while adjusting variables with the MAD!

Last thing I wanted to mention to you, because you weighed in on it earlier, is that my eyes are still very red in the morning, and typically maintain much of the redness as the day goes on. I find this so confusing, because I was sure that it was the CPAP's fault, but now it seems like it cant be the CPAP's fault nor my oxygen-saturation level's fault (because my oxygen saturation was fine on the CPAP)! I've been using high-grade "complete" eye lubricants for 5 days or so, but they're seemingly ineffective. Back to the drawing board I suppose..

Thank you for commenting!