So today I come home from my second overnight sleep study in three weeks with more questions than answers. To say I am frustrated, confused, and even a bit defeated would all be accurate. This may seem confusing when you read why below, but I promise to make sense of it. It’s important to keep in mind that medicine is rarely simple and especially for those of us with multiple or complex medical conditions it gets increasingly complicated.
Let me try to explain what’s going on. About five or six years ago I was diagnosed with severe sleep apnea with idiopathic hypersomnia. To break it down “Barney style” as my oldest daughter would say, I stop breathing when I sleep, A LOT! To add to that I am so tired during the day I often have to take stimulants just to function and even that doesn’t always work. Idiopathic hypersomnia, simply put, is similar to narcolepsy only the precise cause is unknown in IH.
Back then I started using a CPAP (continuous positive airway pressure) machine and mask which helped, but due to other breathing conditions, I was quickly switched to BiPAP (Bilevel positive airway pressure) which automatically lowers the pressure to enable the patient to exhale easier. These treatments nearly instantaneously changed my life for the better. For the first time in many, many years I felt rested when I woke up.
To treat the IH we used Ritalin initially then eventually switched to Adderall, which generally makes a huge difference. In contrast to many patients I know with IH or narcolepsy, I do not take the stimulants every single day. If I can remotely function without them and don’t have to drive I try to go without them. If I know I have to drive or otherwise be alert that day then I will take them. The logic is to prevent building a tolerance to the very low dose I am on and thus avoid having to increase the strength of the medication.
So, to bring things current, earlier this year I noticed I was feeling horrible in the mornings and throughout the day despite using the BiPAP therapy as directed and some other symptoms that indicated to both me and my physician that maybe my pressures needed to be increased. We’ve had to repeatedly adjust my pressures up or down based on symptomology and side effects. I scheduled an appointment with my sleep neurologist who is, by far, the best sleep doc I have ever seen and among the best physicians I’ve ever dealt with either personally or professionally.
After a very lengthy discussion about everything that I was experiencing he decided that I needed a repeat sleep study to reevaluate my sleep apnea and to also reevaluate the pressures needed to properly treat me. Based upon my symptoms he slightly increased my pressures until I could get in for the sleep study as it often takes a few months.
Fast forward to three weeks ago and I had the sleep study. The plan was for me to get all wired up for the study and go to sleep without any BiPAP then once I started having apneas they would put the BiPAP mask on and slowly increase the pressures until they suppressed any apneas. This is what’s called a split study because you start with no CPAP or BiPAP despite having been diagnosed with sleep apnea. This reconfirms the diagnosis (mostly for the insurance companies) and then the treatment is once again tailored to your individual situation.
This all sounds simple enough, right? Well, that’s what I thought too until I awoke in the morning after the first overnight study 3 weeks ago and realized the sleep tech never woke me up to put BiPAP on me. Baffled, I asked him about it and he said “the test doesn’t lie” which I believe was his ambiguous way of telling me I had no episodes of apnea since he isn’t allowed to tell me any results of the test.
I was baffled but had this happen once before just prior to diagnosis. The first test I had was the same way. No apneas detected. My physician was smart enough to question the test based on my symptoms and ordered a repeat test, during which it was discovered my apnea was actually quite severe. When these two tests were compared it turns out I laid differently in each one. As a result, the conclusion was that I must have laid just right in the first one to keep my airway open and prevent it from collapsing causing any apneic events.
So, assuming this was once again the case, a repeat study was ordered, which I went and had performed last night. Once again this morning I awake to not having any BiPap on. Baffled even more than before, I comment to the sleep tech that I must not have had any apneic events, which makes no sense. He simply shrugs because, again, he’s not allowed to comment at all. See, this makes no sense to me because if I don’t use the BiPAP at night I am quite literally often non-functional the next day sometimes even despite using the stimulant medication.
You might ask how I know if this is still the case. Well, they had ordered me to stop using the BiPap a few days prior to the study as in some cases the airways can become used to it and not shrink back down during the study, resulting in what happened the first test three weeks ago. So to be absolutely sure I did everything possible to get an accurate test this time I discontinued my BiPap therapy and any stimulant use exactly one week prior to the test. I haven’t felt so poorly since before I was diagnosed.
To say I was exhausted is an understatement. I would regularly fall asleep while at the computer trying to work. There were one or two days I simply could not function at all and had to take over a two-hour nap just to try to make it through the day and was still constantly falling asleep. Both of these things point to the sleep apnea and not treating it with the BiPAP as in the past. Yet the sleep studies did not record any apneic events.
None of this makes any sense to either me, my sleep neurologist, nor the nurse practitioner, who might I add while I’ve only seen her once, she seems quite thorough and knowledgeable. Both she and the physician will routinely take as long as it takes to discuss and formulate a plan to increase my quality of life while treating the diagnoses. They take the time to treat me as a real person, as opposed to just a diagnosis, but they are the exception to the rule in today’s performance-based fee for service model of healthcare. Often physicians are required to see a minimum number of patients a day and aren’t afforded the opportunity to really dive into issues as these two phenomenal practitioners do, but I digress.
Needless to say, I came home this morning with even more questions than answers, and have no clue how I’m going to function without the BiPAP therapy based on the last week of not using it. However, even if they told me to keep using it I could not do so. See my machine is in need of repair, and with a sleep study stating there was no apnea, the insurance will not repair the machine. So now I’m desperately trying not to think of all the questions running through my mind as it is another seven days until my follow up appointment to discuss the results of this latest test, and the plan from that point forward.
As is often the case for complex patients like myself with multiple diagnoses, things aren’t always cut and dry or simple to manage. As a patient this can be quite frustrating as all I want is to treat whatever the problem is so that I can have at least a little quality of life and feel human once in a while instead of as if I am just drifting around in a stupor or fog of some sort. While one would think this should be a simple solution, let’s treat the previously diagnosed sleep apnea and things will get better again as they did when I was first diagnosed, it isn’t quite that easy apparently.
To be fair, complex and challenging patients like myself must also cause frustration to providers because they too can’t make sense of why the test is not showing any apneas. My OSA was so bad before there was absolutely no mistaking it for anything else, and once I started therapy with the CPAP/BiPAP my energy levels, alertness, and quality of life instantly improved. As a practitioner, I can’t imagine the frustration of not knowing what to do next because the logical things don’t work.
Whether as a patient or a healthcare provider it is important to remember that things are not always black and white and don’t always follow a logical diagnostic pattern, especially in patients with multiple diagnoses that may interact with each other. We must all learn to think outside of the box and white it may seem like grasping at straws we must learn to try to think of the unusual or different things that may be causing our symptoms or in this case change in symptoms and test results that don’t concur with the presentation of symptoms.
Do you have a story of a situation you went through that the diagnostic process was particularly frustrating, challenging, difficult, or took a long time? Please feel free to share your experiences in the comments below so that others know that they aren’t alone!