Your Own Best Advocate
3 years ago (2016) I was exhausted. I don't mean man-I-slept-like-crap tired or I-was-up-too-late-watching-Netflix tired. I mean exhausted. I mean falling asleep sitting at my desk after a normal night's sleep exhausted. I'm talking fall asleep in a meeting while other people are talking exhausted.
So, I did what I thought was the right thing, I went to the doctor. She suggested my running training was catching up with me and suggested I cut down on the miles. So I did. I was still exhausted. It didn't help. So I went back to running. I ran a 12K the following March (2017) because I was going to be exhausted either way, and figured at least this was good for me.
I returned to the doctor. She thought it was depression. She upped the medication I was already on for anxiety.
Back to the doctor.
She upped my meds again. So I'm now at 3x my original dose.
Still exhausted. And it was getting worse. I was not just falling asleep sitting at my desk, I was falling asleep waiting at a stop light. I was falling asleep standing up. People were noticing. I was so embarrassed and also scared. So now, it's fall of 2017 and I'm exhausted and terrified and on way too high a dose of anti anxiety meds (so an emotionless shell who was numb to everything).
The doctor finally recommends me to a sleep specialist, but by the time I can get in to see the specialist, it's May of 2018, I'm engaged, and I'm three months from quitting my job and leaving the state to go to grad school. The sleep specialist (SS1) suspects narcolepsy, but we are unable to get a sleep study scheduled before I leave.
August of 2018 I move states and change insurance carries from a great corporate plan to an overpriced student one. Because the order is from an out of state provider, I have to find a new sleep specialist in Indiana (I have one option covered by my insurance) and start over. I got to my second sleep specialist (SS2) who I finally get an appointment with. He does not suspect narcolepsy at all, but rather insomnia related to my anxiety. This was actually because SS1 had told me I needed to go off of my anxiety meds in order to get this special sleep study done. So by the time I get to SS2 I have: moved states, moved in with SO, started grad school, and I'm planning a wedding - while being off my anxiety medication. Thus, he thinks I'm just suffering from anxiety induced insomnia, orders a standard sleep study and tells me to go back on my meds.
I return to SS2 in late 2018 to finally get the results of my sleep study. No insomnia (I could have told him that), and nothing out of the ordinary, just some limb movement. But he couldn't tell if my limb movement was waking me or if I was waking up and then moving my limbs. He calls it Restless Leg Syndrome and gives me meds. They leave me super groggy in the morning, and my sleep quality doesn't improve. He also refers me to another sleep doc in town who also deals with TMJ cases (because there's a suspicion that my TMJ is why I'm waking myself up). Spring of 2019 I meet my third sleep specialist. For the first time, I felt heard - truly heard. He listened. He understood. And he came up with a game plan - including ordering that specialized sleep study to check for narcolepsy. SS3 was the best person I could have met in this.
Fall 2019 I had my second sleep study. It took me out of class for a day - costing me a letter grade in a class that I missed. I had wires and monitors hooked up to me, and spent the day taking naps while someone watched me sleep. Then, I went home, showered, and went to a job interview networking event because while all this is going on I'm STILL in grad school. Still trying to find a job.
The study initially came back inconclusive (I wanted to ask for a refund), but after further interpretation and comparing my study with the known impacts that SSRIs (anti anxiety meds) can have on a sleep study they were able to conclude narcolepsy. But the issues didn't stop there. It took two weeks of me calling back and forth to get a copy of my sleep study to my doctor and to get him to do the final determination of medication and then for his nurse to answer the message he had sent her. Don't get me wrong - I know that no nurse knowingly withholds care and no doctor wants their patient to suffer; I know it gets busy, which is why I was persistent. But y'all, it's been so worth it.
I came home after the first day of being on the right medications and told my husband "I didn't know people's eyes were this open all day. My eyes are just SO open. Is this what it's like?" I wasn't drinking my usual 300ish mg of caffeine. I was just a normal functional person.
I share this in hopes that someone else can relate - maybe not with the same diagnosis, but with the navigation of health care, with having to advocate for yourself, with having to research EVERYTHING (I mean more than just a quick WebMD, I'm talking digging deep into medical articles), with having to push though with "normal" life when you also have a nagging problem. I share this in hopes that it will remind you that you are your own best advocate. I share this in hopes that you won't give up on getting the care you need. Keep fighting. You're worth it.
(Me and our pup catching some ZZZs)