My next goal is to explore my other options and continue my research, trying to find ways of treating myself at home, or trying new methods of approaching doctors.
I have reached out to a sleep clinic nearby, hoping to get a suggestion or even a lead to which avenue I should take next. I’ve been doing some research on sleep tests that can be done at home that can usually be done for 1/5th of the price as a full sleep study. Cool thing, some studies have been done, and it’s possible that the Apple Watch sleep tracker is surprisingly more accurate than the clinic gold standard home test version of a sleep tracker watch. The medical test is called an actigraphy. It hasn’t been verified officially yet with enough testing so they can’t “officially” use those results. But I’m hoping at least it could be used and save me some money.
More information on this test here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3109647/
I heard back from the sleep clinic and have an appointment scheduled for sometime in July. The lady from the clinic that I spoke to seemed baffled by the terms that I used like “idiopathic hypersomnia”. Though she found it amusing that I included my Epworth sleepiness scale in my original message to them.
For those that may have missed it earlier, at this point in my research I am pretty sure I have something along the lines of Idiopathic Hypersomnia. In simple terms, it is the opposite of insomnia. Instead of not being able to sleep, I can’t stop sleeping. “Idiopathic” is the medical term for “we don’t know why”. It is in the same family of narcolepsy, just without the instant sleep caused by a trigger.
The Epworth Sleepiness Scale is a questionnaire used to try and figure how just how tired someone is. For example, my partner scored a 6 out of 24 on his scale. Meaning, he might fall asleep in front of the TV occasionally, rarely as a passenger in the car, and never while stuck in traffic. Whereas my score was at least an 18 out of 24, meaning if I didn’t fight it every second, I could easily fall asleep anywhere anytime and that I need to seek medical help (duh!).
Epworth Sleepiness Scale: http://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/epworth-sleepiness-scale
It kind of surprised me that none of the doctors that I have spoken to are familiar with the term Idiopathic Hypersomnia, even the sleep clinic. I took one medical terminology class and I understood it when I first saw the term. The problem is this term just started being used only a few years ago and is still trying to be understood and tested. There are only 2-3 medications out there that may be able to help if it truly is IH. I will likely be going much-much more in-depth about Hypersomnia in a later post but below is a link for some brief information on the subject.
Idiopathic Hypersomnia: https://www.hypersomniafoundation.org/wp-content/uploads/IH-Characteristics-and-Diagnostic-Criteria.pdf
I’m scheduled to speak with my psychiatrist on Monday. Apparently today my PCP denied my request to refill my anxiety meds even though he has been refilling it for 3+ years, and with no notification from the office as to why. I guess that answers my question to if I’m going to keep going back to my PCP. At least I have my psychiatrist to fall back on for the prescription.
I plan on explaining to my psychiatrist that my current meds of the amphetamine salts are not working and hopefully we can find something new to try. It is still amusing to me that he seems just as baffled by my brain chemistry as I am. This med should’ve worked. He explained that it should’ve given me a “caffeine” type of effect. Currently, I am taking it, but all it is doing is helping with my focus in creating this blog. It is taking all of the coffee and soda in the house to make sure that I don’t fall asleep on the keyboard.
My psychiatrist showed interest over the last few sessions about reviewing my annual lab results to see if my physician may have missed something. I am really hoping he might be able to see something that I can’t or suggest an idea of how to move forward.
Funny enough, my brother just sent me a message with a screen-captured twitter post about ADHD in adults. Having ADHD is pretty likely for me since I have trouble focusing, I talk fast, forgetfulness, I get bored easily, start projects, and never finish them, etc. Though I’ve been like that for as long as I can remember but I always thought it was nature vs nurture situation. Do I have ADHD? or is that just who I am? or did I pick up my mother’s ADHD-like habits growing up? In my adulthood I’ve learned to manage and deal with these things by taking notes while on the phone, organizing so things are easier to find, keeping endless calendars, setting reminders, making a LOT of lists… but maybe its something my psychiatrist can help with or rule out. Time will tell.
After my last post, it took me a while to try and get back on track. After a while, I determined that at the least I needed a new PCP since my current one didn’t seem to care, among other things. I got a recommendation for a new PCP from some friends and scheduled anContinue reading “New PCP, New Possibilities?”
It took 2 weeks to get my results back from the sleep clinic, but I got them. I do not have narcolepsy and my average sleep latency (how long it took me to fall asleep) was 13+ min so I do not fall within the idiopathic hypersomnia diagnostic criteria. What does this mean? Back toContinue reading “Excuse me while I scream and cry”
A few nights ago I officially had my sleep study and the results are pending. I should find out next week what the results are. Even though the nurse wasn’t supposed to tell me, because she liked me I guess, she told me I didn’t have sleep apnea (duh!). But it was nice to hearContinue reading “To Do: Sleep Study – DONE”