The Queen of Sleeping

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

Share Post

SomnusNooze Home Page

SomnusNooze Editions/Archives

The contents of this website, including text, graphics and other material, are for informational purposes only. This website is not intended to be a substitute for professional legal or medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Always consult your own attorney or other legal advisor with any legal questions you may have. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisors, products, procedures, opinions or other information referenced on this website. Reliance on any information on this website is solely at your own risk.

The Hypersomnia Foundation makes no representations or warranties about the satisfaction of any government regulations requiring disclosure of information on prescription drug products. In no event shall The Hypersomnia Foundation be liable for any damages (including without limitation incidental and consequential damages) or costs (including without limitation attorney’s fees) based on any claim arising from the use of this website and/or its content.