I was diagnosed with severe obstructive sleep apnea last year about this time. I went to a clinic with Alzheimer's-type symptoms. I was able to check off every symptom of an Alzheimer's patient, and more. They kept me for a week and I was seen by endo, neuro, psych, neuro psych, etc. I also did my first sleep study ever. I had amazingly never had a doctor suggest one, despite years of exhaustion, depression, anxiety, etc. Once I did my sleep study, they said I had severe obstructive sleep apnea and woke up a ton of times during the night due to my airway collapsing and in turn my brain and vitals were not getting oxygen. I could not believe that all the health problems were due to not sleeping, but the only prescription I left Mayo Clinic with was a CPAP. I did get somewhat better from CPAP therapy, but after 8 months of wearing it religiously, all my symptoms of severe memory loss, cognitive problems, not being as sharp, smart or witty, extreme irritability, erectile dysfunction, high blood pressure, gastro problems, and many more came back and now are full blown again. For some reason I am not tolerating CPAP therapy now. I am waking up extremely bloated like a pregnant man and I burp air all day. This has gone on for months and it is progressive. I have lost 2 jobs during this last year due to my health and I guess I have several questions. How bad can a person get from severe obstructive sleep apnea? Have you heard of memory loss being so bad from sleep apnea? Can obstructive sleep apnea be a disability? I am a 43-year-old, single male. I have never been married and doctors believe I have had this for 7 to 15 years. I am seeing local sleep docs, neuros, psychs, etc. I seem to be a baffling case to so many of these doctors. I feel like I have Alzheimer's and other illnesses. Can you try to address this post? I know it is all over the place. I can barely spell, can only function for about 4 to 6 hours per day, and can't drive after about that time. My symptoms are getting worse and progressive. Please advise if you can. Thanks so much for all you do and God Bless!
Given that you are under the care of other doctors and have no formal doctor-patient relationship with me, I cannot provide you with specific recommendations to follow. That said, I can make comments about my own patients who have had experiences that appear to be similar to yours.
First and foremost, whenever someone reports an excellent response to CPAP that then dissipates over time, there is a very high likelihood that something is malfunctioning with the machine, CPAP is no longer delivering the best pressures, or some other intercurrent illness has emerged that may be affecting one’s sleep but not in a way that constitutes a sleep disorder. For example, someone who suffers acute or insidious deterioration of metabolic states in the body (poor glucose control, inadequate thyroid replacement, low testosterone, vitamin D deficiency, to name a few) will often report pervasive changes in health affecting multiple organ systems in the body. As such, we would not imagine that a sleep disorder would be the primary cause of this deterioration.
In contrast to point #1, it is interesting that you say “all my symptoms of severe memory loss, cognitive problems… extreme irritability, erectile dysfunction, high blood pressure, gastro problems, and many more came back and now are full blown again.” Obviously if these symptoms were responding to CPAP therapy, then it would seem likely that sleep apnea was contributing in part at least to the underlying cause of some of these problems. And, since you have mentioned many symptoms that have been linked by many researchers to OSA, the role of sleep apnea in such a case is probably quite important.
When we see second opinion patients with these types of complaints (“CPAP helped but now it doesn’t help”), we almost invariably discover the pressure settings on their device are too low or we discover they need a more advanced PAP technology such as BPAP, ABPAP, or ASV. This reminds me of an oft neglected aspect in the treatment of sleep apnea regarding how the human airway responds initially to positive airway pressure and what changes in the airway may necessitate further adjustments to the settings. There is a fair amount of research showing that many patients require higher pressures a few weeks or months after their starting with their initial settings.
One theory proposes that during the baseline titration patients are simply unable to tolerate PAP therapy at high levels, and therefore the technologist in the sleep lab cannot adjust the settings any higher than tolerated. Once patients adapt to PAP and gain some degree of comfort, they apparently are able to tolerate higher pressures. If the pressures are not adjusting upwards, then the patient reports a worsening of symptoms. In unpublished data, we recently reviewed information on more than 1,400 second opinion patients who visited our center in the past 8 years, and the overwhelming majority fit this model. They needed in most cases a new dual pressure device and noticeably higher pressures on inspiration. Interestingly, pressures on exhalation tended to be raised as well, but a fair proportion needed lower exhalation pressures.
The third area of concern is the problem of bloating while using CPAP. I’m glad you mentioned this problem, because it is surprising how little discussion there is in the literature on the topic. Most people assume air swallowing (aerophagia) indicates the pressures settings are too high, but that’s only half the story. The most common causes of aerophagia, whether pressures are high or not, are upper airway triggers that stimulate air swallowing or the condition of leg jerks (periodic limb movement disorder), which speculatively seems to trigger swallowing in relationship to the kicking/arousal activity.
We have treated and eliminated air swallowing by using medications to treat leg jerks, and this therapy has been the single most successful approach to resolving aerophagia. The upper airway triggers involve a lot of potential issues such as mask leak, mouth breathing, reflux, allergic or nonallergic rhinitis, sinusitis and postnasal drip, and as you can imagine it takes longer and more precise efforts to sort out the problem in these individuals. That effort is well worth it, because the majority of cases will find a solution. As a last resort, sometimes an ENT evaluation will shed light on the problem of aerophagia, but in rare cases there are anatomical characteristics in the upper airway that literally make it impossible to use PAP therapy. I have seen two of these cases, and both patients were absolutely miserable; one had to retire from his very demanding job and go on disability after years attempting PAP therapy.
Last, there is no question that OSA, notably in severe cases, can mimic other systemic illnesses in ways that would disguise the OSA from non-sleep physicians. If you go online, you can search for case reports regarding sleep apnea patients who presented as if the main problem was depression, dementia, suicidal behavior, or PTSD. These case reports involved small numbers of patients, but the results reported are dramatic, suggesting an unlikely placebo effect, especially since the histories usually reported improvements for several months or longer.
How the sleep apnea component was previously overlooked in these patients is not always detailed, but it is often put forward that patients described the common thread of being exhausted along with other low energy symptoms. Of course, we cannot know if these scenarios fit your situation, but at least it is somewhat encouraging to know you once responded well to CPAP, which means if I were treating a patient with this type of circumstance, I would be eager to learn whether adjusting the CPAP pressures or preferably treating the patient with a more advanced PAP therapy device would lead to major improvements in patient outcomes, particularly in the areas related to raising energy levels, controlling blood pressure, and enhancing cognitive performance.
Finally, and perhaps of greatest long-term importance to you, it is essential to appreciate that the human organism is capable of many complex system malfunctions, which means it is quite rare that focusing only on sleep issues will bring a complete cure for all your ills. Sleep is critically important to the human organism, and it is worth the time and energy to attain the highest quality of slumber as regularly as possible. But as a residency-trained internal medicine physician, I always want to caution my patients not to put all their eggs in one basket. I will go to the mat for all my patients to gain the best sleep treatment regimen, while at the same time reminding them how they must attend to their other health problems with just as much intensity.
In closing, let me say that I hope you are able to persevere to uncover all the causes of your myriad symptoms. At your age, I would presume it would be even more depressing for you to go on disability. Here’s hoping the light at the end of the tunnel will soon be shining upon you.