I have withheld discussing in detail the health issues I've been facing over the last year or so on public forums (and even in many more personal settings, too, for that matter). However, after 6 months of visits to doctors and a surprising, unexpected, yet relieving turn of events, I am ready to share some of what my experience has been.
Over the last several months, I've undergone several medical tests to identify and diagnose the cause of a possible movement disorder. I started having jerking movements mostly in my legs probably about 3 or 4 years ago. At that time, it happened mostly at night while falling asleep and according to others, while I was sleeping. It didn't seem to cause much of an issue for me at that time. I thought I could attribute it to my Fibromyalgia (diagnosed 12 years ago), side effects from medications I was currently on, or that perhaps it was just "normal." Within the last year, these involuntary movements occurred more frequently until they were happening daily and during wakeful periods. My right leg and thigh are seemingly affected the most, though it occurs also in my other leg and in my wrists and fingers on both hands. My pain levels increased (which I attributed again to Fibromyalgia and the constant tics and twitching), my balance and gait began to suffer, and I experienced chronic numbness and tingling in my hands, arms, and sometimes face. Test after test came back normal, and this was in many ways reassuring. There was nothing structural causing my symptoms and therefore it was possible that with treatment my symptoms could improve. After months of working with my PCP, a neurologist here in Spokane, and consulting also with a neurologist in Boston, I had it "narrowed down to 2 categories." It was "similar to but atypical of" a tic disorder and Restless Legs Syndrome. My neurologist scheduled one final test to be done--a polysomnogram, also called a sleep study. If the movements occurred also during sleep, it would be a clearer diagnosis and classified as Periodic Limb Movement Disorder. Typically that also only occurs during sleep, but can be very disruptive. I'd been experiencing extreme fatigue and even had blood tests to check for Mono, iron deficiency/anemia, inadequate B-vitamin levels, Diabetes, etc., and all that came up was an abnormally low level of Vitamin D. If the polysomnogram showed evidence of movements during sleep, I would start on a low dose of Mirapex, a drug used in large doses to treat Parkinson's Disease and in lower doses for PLMD and RLS. I was discouraged by the thought of having to medicate at all as I had spent over a year decreasing, detoxing from, and eliminating the cocktail of pharmaceuticals I'd been prescribed as a teenager to treat a mood disorder that was later identified as an inaccurate diagnoses to begin with. I was still angry and frustrated with the effects of these drugs and now was faced with the choice to continue as things were or to medicate yet again and potentially for the long term. At the same time, I had reached a point of desperation. I was willing to try pretty much anything, which somehow felt like defeat in and of itself. I was feeling exhausted, unable to do things that once were easy and enjoyable, and much of the time, I was feeling as though I were at the mercy of these limitations. I do feel like I've stayed pretty positive and optimistic most of the time, at least outwardly. I found silver linings when I could, and when I couldn't, I tried to keep that to myself.
I met with the sleep physician for a consult on Tuesday afternoon. He talked to me a bit about my symptoms and what my neurologist had discussed with him. Most people who come in for sleep studies have concerns about sleep apnea, but he explained that it was very uncommon in females in their mid 20s. (I found out today he hadn't actually planned to go through with the test, but did and was glad for doing so.)
He checked my throat anyway and everything looked fine. I was set up to come in at 7:30 on Wednesday evening when I would be hooked up to several electrodes and straps to measure brain activity, breathing, eye movement, muscle movements, etc. I arrived a bit early, got hooked up and was ready to go to sleep by 8:30. The setting was new and the additional "accessories" a little uncomfortable, but I fell asleep by 10. At 1:30AM, the door opened and the technician came in. "Well, this isn't what we expected, but you actually do have sleep apnea. We're going to put a CPAP mask on you."
And I cried. Like a baby. My nose ran inside the mask which I needed help to remove; it was disgusting. Why? I had made it on my own to all of these appointments, through all the tests, all the potential diagnoses and prognoses, and never broke down (at least not IN the office). All I could say was "these are for fat, old men." In my mind, I imagined that Mr. Sleepytech here would be the last man to EVER enter my bedroom so long as I was hooked up to a Darth Vader mask. At 1:30AM, the unexpected is often hard to swallow. Additionally, I was judging myself based on preconceived notions of who gets sleep apnea.
I am not the only one with these preconceived notions either. In the days that followed, I have researched many online forums for sleep apnea patients and folks who use CPAP masks. While many of them are young like me and not obese or male, there were many non-patients who posted comments similar to this one, which I have copied and pasted from a blog/online forum for sleep apnea patients:
What I also learned is that not all sleep apnea patients have a snoring problem. On a scale of 1-10, my "snoring level" was at a 1--very low. Additionally, apneas (cessation of breathing) and hypopnias (shallow breathing) are measured on a scale of number per hour of sleep. Between 0 and 5 apneas per hour are considered "normal." Anything above that meets the diagnostic criteria for sleep apnea.
I filled out a survey in the morning after the test in which I was asked how many hours of sleep I thought I'd had. I answered a total of 6 or 7. Before the CPAP was installed, I thought I'd slept about 4 hours. I had in fact only slept a total of 2 hours and 27 minutes and in that time had an average of 30.4 apneas per hour. That is diagnostic criteria for severe sleep apnea.
So back to my snotty, soggy, pity party. Here I was, all choked up (pun TOTALLY intended) because in my exhausted and poorly oxygenated brain, I was blaming myself. Truthfully, I'd blamed myself for poor health throughout this whole process. My "logic" was that:
I am young and should be able to control my health and body. If these functions are out of control, there is something I am doing or not doing to contribute to that.
This unhelpful self-talk was not made any better by the early experiences I had with doctors as a teen and young adult. Once I was diagnosed in my teens with a mood disorder, it was hard to feel heard any time I did have a physical concern. Even my diagnosis of Fibromyalgia was a long time in coming by because doctor after doctor told me: "you're just depressed," or "just anxious." The problem with language like that is that not only does it lead to the patient feeling completely incompetent and unaware of anything going on in her own body, but it devalues the actual depression and anxiety that can and does occur when we are physically ill. I saw my physician in Couer d'Alene, Idaho back in 2007 or so because I constantly felt short of breath and had chest pains. Inhalers were not helping at all. He told me: "It's probably just anxiety. You should work on that." When I told him that I don't feel anxious during the time of my symptoms he responded: "Well, it could be something more serious, but you don't want to worry about that, do you?"
No, I don't.
So, I will wear a CPAP mask to sleep every night, all night, for the rest of my life. Without it, my apneas will immediately return. It may not be the most attractive aspect of my pajamas, but it sure beats the alternatives. When you are not getting oxygen to the brain, neurological symptoms can result (i.e. Periodic Limb Movement Disorder--and this was occurring during sleep concurrently with every apnea). As you become overloaded with toxic carbon dioxide, risks of stroke and heart disease increase. People with sleep apnea deal with chronic fatigue because every time they do have an apnea, they are jolted from a deep state of sleep to a light state of sleep if not completely woken altogether. Headaches, especially in the morning and at night are common. (Maybe I won't even need those overpriced migraine pills anymore!) Other common signs and symptoms of sleep apnea include waking up with feelings of shortness of breath and chest pain, sleep sweats, having to urinate frequently at night, waking with a racing heartbeat, and chronic sinus infections. Many patients who have sleep apnea also have chronic nightmares, sleep terrors and sleep starts (all of which I've dealt with from childhood). Mood disorders, depression, and personality changes can also occur due to lack of sleep as can accident proneness. It is no surprise with all of this that people who have sleep apnea have difficulties with job performance, academic performance, and within their relationships.
Now, for the first time in a long time, I can sit back and breathe--literally! I can let go of the negative notions of fault being involved in my state of un-wellness. I can forgive the "professionals" who, years ago, treated me with heavy doses of medication and even heavier doses of disregard and dehumanization. It is not my fault and further more, had I not pushed through the fear of self-advocating and finally finding doctors I feel comfortable working with, I would continue to (not) sleep every night away, slowly--or potentially more quickly--risking my health and life.
The Gift of the Unexpected may come in an ugly package (really, that CPAP looks like a plastic elephant trunk!), but nothing is more beautiful than peace of mind and finally becoming well.
Additionally, looks aren't everything. That being said, I am totally knitting up some CPAP tube cozies with my Knifty Knitter. After all, if my CPAP did not coordinate with my bedroom decor, I'd be completely unable to sleep at night!