To Doctors William Hart and Jacob Ginsburg
I have requested a referral to a sleep doctor. The medical referral system doesn’t make room for self referral; I will proceed however, so help may arrive in time for me to enjoy it. Let me give this context and explanation. To do so I am going back in time to the early days of the Stanford Sleep Research Clinic, Dr. Wm Dement, founder of the clinic, and his class, Sleep and Dreams. (I include the pack of narcoleptic dogs Dr. Dement would bring to class.)
When I told my son I was going to tell this story he said, “Be sure and tell them somewhere in the Stanford archives is an interview I did for them about this.” (consider it done)
Circa, very early days of sleep research. The Stanford Sleep Research Clinic was a few years old. “Sleep and Dreams” class had become popular very quickly and Dr William Dement was a popular MD and professor.. One day I walked up to Dr Dement after class and said, Dr Dement, my son is 6 years old and I am sure he has sleep apnea.
Dr Dement responded. “Did you learn this from today’s class?” I said I did. He came back with a response I have never forgotten, “Well then, you are right.” His confidence was clear.
He asked if I had $10,000 to pay for the overnight sleep study. . Single parent, Stanford tuition, 2 kids, no child support: I felt lucky on the days I had $10 to use for a little something. at the Stanford Coffee House . His response: I can show you how to get it.
My excitement was boundless – this was more than I dreamed for – finally getting help for my very loud snorer, hyperactive son with a concave chest, We did the overnight and found yes, sleep apnea was the problem. Luckily I had the world expert on sleep apnea to help.https://en.wikipedia.org/
Sleep study done, apnea confirmed. How to treat? The fear we (son and I) had was that he would have to have the operation then currently in vogue: insert something in a permanent opening in throat. Luckily Dr Dement wanted to remove tonsils and adenoids. Done. It worked. I had a 6 year old that did not snore, whose chest filled out to normal and who no longer was hyperactive in school (to stay awake because of fatigue from lack of sleep).
Fast forward. My turn for a sleep disorder; insomnia that was worsening. Luckily at that time GHB was OTC. Country Sun, a local health food store sold it. As did many places. As we know, GHB was taken over by the pharmcos and demonized as a date rape drug. Luckily I knew one of the authors of the then current book: GHB … by Ward Dean, MD and Steven Fowkes. Since then there are others that explain GHB as the substance it really is – an endogenous substance to help with sleep architecture, pain and anxiety depending on dosage. JAZZ Pharmaceuticals of Palo Alto was the first to monetize GHB in the pharmaceutical industry. Sleep disorders and anxiety and pain – a massive market. Jazz was the first and then it became XYREM. My MD was Alan Brauer in Palo Alto https://www.linkedin.com/
My current symptoms: I wake up and want to go back to sleep. I have excessive daytime sleepiness. My eyes close, seemingly random, in the middle of the day. I have little energy because of lack of sleep. I attribute this to 3 years of pain….from a fractured femur to fractured sternum and being in a car crash which totaled my car. (insurance found other party 100% responsible – this was not due to narcolepsy.) The stress of the recent past, both physical and mental has been enormous and my sleep has suffered. I need help.
I will leave you with an explanation of why I think I might be right about narcolepsy (no cataplexy). Years ago Donald Kennedy was head of the FDA. Stanford approached him and asked him to return as President( he was former head of Bio Dept). https://news.stanford.
FYI – Dr Dement and GHB and Narcolepsy
Dr. William Dement, the legendary pioneer known as the “father of sleep medicine,” played a crucial role in validating, studying, and advancing gamma-hydroxybutyrate (GHB)—now clinically known as sodium oxybate—as a groundbreaking treatment for narcolepsy and cataplexy. [1, 2]
While GHB was first utilized for narcolepsy in the 1970s by Canadian researcher Dr. Robert Broughton, Dr. Dement and his colleagues at the Stanford Sleep Medicine Center conducted extensive clinical trials and sleep laboratory research. Their work cemented its medical legitimacy, directly leading to its eventual FDA approval as a prescription medication (Xyrem). [1, 2, 3]