In this Personal Journey story, a “Queen of Sleeping” recounts her struggles to obtain a correct diagnosis, after first receiving diagnoses of lupus and POTS from a variety of doctors.
My journey to a diagnosis of idiopathic hypersomnia (IH) is probably not unique. Like many people with IH, it took years to receive a proper diagnosis. My journey began with my primary care provider, who suspected lupus. After lots of blood work, I was referred to a pediatric rheumatologist. The rheumatologist did his own blood work, and he concluded that I had something called a ‘lupus-like syndrome.” Basically, I had some components of lupus, but not enough to fully diagnosis me with lupus.
Meanwhile, my symptoms were not improving, and I was beginning to feel more and more discouraged. The rheumatologist’s theory just didn’t seem to really ‘fit’, and according to the rheumatologist, there was no treatment for this, which I found unacceptable.
So back to my primary care provider I went, and he decided to do a tilt table test. The tilt table test showed that I had POTS (postural orthostatic tachycardia syndrome). From that point, my parents and I went to the Mayo Clinic in Minnesota. The physicians there gave us some advice on managing POTS and placed me on some medications. The medications did help with some of my symptoms from having POTS, but they did not help with the excessive sleepiness. We were also told that I might “grow out” of POTS.
A few years later, my parents and I decided to go back to the Mayo Clinic because I was still so sleepy. At the Mayo Clinic, the physician that I saw suspected that there was something wrong with my sleep. I thought this was ridiculous because how could there be something wrong with my sleep when all I do is sleep? I was the queen of sleeping!
But my doctor wanted me to return to the Mayo Clinic to do a multiple sleep latency test (MSLT). After a few weeks, my parents and I returned to the Mayo Clinic to do the MSLT. After the test, we were told that I had idiopathic hypersomnia. When I asked the doctor what that meant, he said “We don’t know why you are sleepy.” Wow! What a non-informative diagnosis. But at least it was a diagnosis.
FINALLY, I had a diagnosis!
M.M. – South Bend, IN – USA