The Hypersomnia Foundation is launching a new resource for readers of SomnusNooze called Ask the Doctor, which will accept questions related to one of the three central disorders of hypersomnolence: narcolepsy, idiopathic hypersomnia, and Kleine-Levin syndrome.
Members of the Foundation’s medical advisory board will answer the questions, which will then publish in the foundation’s weekly e-enewsletter, SomnusNooze. Get more details about question guidelines at www.hypersomniafoundation.org/hypersomnia-news.
Questions should be submitted to atd[at]hypersomniafoundation.org.
Sign up for SomnusSnooze at www.hypersomniafoundation.org.
For years I have been complaining of extreme fatigue that would come suddenly, stay for days and then leave as quickly. Then other times I would just be just exhausted, both physically and mentally, unable to think, function, but I had to go to work because I live alone and I have to have my job. I rely on multiple alarms to get me up because one doesn’t do it. Other days, I couldn’t get out of bed. I developed a workout routine because I was losing weight and it was working so even if I was exhausted, I would push through it even if I couldn’t remember what number I was on because I had a routine. I am an Army Veteran so I was used to getting up early but even before military life I had routines down because I was in Job Corps and before that just out of habit. My concentration is shot just like my memory. I have suffered from migraines for approximately 15 years and as the years progressed they grew to be debilitating unless on constant maintenance medication. A couple of years ago I developed Raynaud’s right after a total knee replacement and they ran every autoimmune test several times there was trying to find out why I had it and nothing came up. I had reported to approximated 4 VA doctors that I had fallen asleep doing various activities, one of which is driving, sitting at the stop light, talking to Veterans, standing up even after eating a whole bag of pixie sticks so I started to be mindful of when I was tired and didn’t drive when I was tired or if I was driving when it hit, pulled over and called someone. Last year I was diagnosed with a PFO after complaining of frequent chest pains when the rheumatologist sent me to the cardiologist and they did an echocardiogram. Earlier this year, I finally confronted my former VA doctor, who told me it was just my PTSD that was making me tired and that I needed to go see a psychiatrist and get put on medications. I told him he smoked his breakfast and that I wasn’t going to see any psychologist or psychiatrist and I wasn’t going to take medications just because they said I had to. Not happening. I asked him for a sleep study for narcolepsy and he sent me the Epworth sleep study scale thingy and I filled it out and sent it back and I ended up switching doctors between getting the test done and got a really awesome neurologist who sent me to OU Children’s Hospital who did the polysomnography and the MSLT and I was diagnosed with Idiopathic Hypersomnia. 🙁 No bueno….Then he gave me a prescription for this stupid medication called Provigil which is the devil. I read side effects….that’s why I don’t take most of the medications they give me in the first place and I’m not going to take this one either. I will just have to figure something out. I have dealt with suicidal tendencies in the past, have had bad anger issues, I’m not taking this medication. I was just delivered from these issues and I won’t be bound by them again. This medication is addicting as well. No thank you. The others are for ADHD….same issues…no thanks…back to the think tank