Update on the Diagnosis and the Treatment of Narcolepsy

[@Oogiappa]

I wake up in dreams within dreams within dreams. And it’s getting annoying. Did my first sleep study on Saturday - hoping to find clues and answers.

[@samuelleesteelmd1931]

Dear Sir: Thank you for the update. The lecture brought up an interesting point that 90% of the neurons have to die off before Narcolepsy can be present. One of the thoughts I have is that an insult via the HLA can initially cause some of the cells to stop functioning but not die. So that there is a recovery of the symptoms later when the neurons start functioning again. (eg. in strokes the affected neurons are greater than those that have actually died. As a consequence, resolution of the stroke event has many cells along the periphery of the insult begin to function again.) The second problem I face is the fact that certain events can cause the MSLT to become positive even though the neurons are not dead. I am sure that I have Narcolepsy Type 1. The first time the HLA was done was working in medical research in a HLA laboratory. Every two years each site collects ~200 random samples for the Intl. Workshop on tissue-typing. In 1986 the results were DQw1,-; DR2,-. The second time it was done was during medical school, again for the Intl. Workshop on tissue typing. The results were: DQw6,-;DRw15,-. I have not had the HLA done a third time. Today, I face decisions by politicians and family that either do not understand the disorder, or refuse to insure the costs. Perhaps the information will eventually get out about it and other rare diseases/ disorders. Sincerely yours, Samuel Lee Steel, MD Retired

[@newton2013]

I spent 25 years trying to figure out why my hypothyroid condition was not healed by balancing my thyroid. It was Narcolepsy/Idiopathic Hypersomnia the entire time. I HAD TO FIGURE THIS OUT MYSELF. The US medical system told me and my family for 25 years it was all psychosomatic. This has all come to light recently, and I am working on not having a nervous breakdown after realizing the last 25 years of my life were complete torture for NOTHING. :) Thank you for your information.

[@NarcolepsyNetwork]

Unfortunately, misdiagnosis is very common. At Narcolepsy Network, we work very hard to make sure more people are diagnosed at a much faster rate - that means more awareness to the general public and the medical community. Best of luck on your journey. We are here for you and for all people with narcolepsy. If you need support, we run a weekly virtual support group meeting on Zoom on Thursday evenings. Check out our website for details: narcolepsynetwork.org.

[@newton2013]

@@NarcolepsyNetwork Thank you for the Zoom info!

[@applesoranges8015]

I've had this since age 3 from a tonsillitis infection. I'm 59 now, and I've never known what feeling rested feels like. My mother had laryngitis which caused hers. I also have insomnia and so did my mom.

[@acaciakapusta8921]

I have Idiopathic Hypersomnia. Ironically I fell asleep through this entire lecture :-|

[@acaciakapusta8921]

@@kayskidf1 hahaha that's awesome. Yeah I also take amphetamines and sleep through a lot of stuff. Today I was out of it or asleep for most of the day

[@247365superdave]

I have gone into REM sleep in seconds. I'm 36 now and my life sucks because of narcolepsy.

[@maiashnuggles]

Same here. I just found a doctor who mentioned Xyrem to me and am hopeful it might help.

[@BeeBopGaming]

I hear you. I’m 34 and been on Xyrem for over a year and half now. It helps, but only to a extent. I still have VERY low energy most days. The days I do have energy, it only last about 3-5 hours. I’ve also tried 4 different stimulants and since I suffer from chronic migraines, all the stimulants trigger very bad migraines so I can’t take them. So I’m unable to work now, and have no social life anymore. I just basically play fortnite and nap. I feel so stuck and searching for a support group.

[@BeeBopGaming]

maiashnuggles how has Xyrem worked for you? It barley helps me.

[@postables857]

beebop shopbop I'm sorry to hear this. Struggles to this degree scare me. I am currently struggling greatly, and have thought of quitting my job. I currently have taken two weeks off work; scared because medication doesn't seem to help anymore.

[@BeeBopGaming]

Kimberly Post have you tried Xyrem? That’s the best medicine to help with Narcolepsy. I just recently had my dose changed and think we found the right amount. I’m having better energy. Not wonderful, but ok. A lot better than what it was. It got so bad before that medicine I was hearing voices and seeing things that weren’t there.

[@natalieleonard5876]

I don’t notice differences btwn modafinil and provigil. I do modafinil 200mg am and 200mg at 1:30pm. Sleep 10pm-6:30am. Exercise 30-1hr a day if I can.

[@WashingtonsRocks]

Modafinil and provigil are the same. Did you mean provigil and nuvigil? (those are also named modafinil and armadafinil respectively)

[@Madronaxyz]

What are the two things he points to on the whiteboard as diagnosis that people might have had before they were finally diagnosed as having narcolepsy?

[@danandam7100]

I wish you'd been my doctor maybe 10 years ago...

[@nervgear2254]

I have the sympthom of excessive sleepiness but I can't actually sleep , I get close to nREM sleep but I am still conscious and can't seem to get any sleep until my usual circadian rythm time about 10/11 PM . I don't hava catalepsy but the symthoms of sleepiness is acompanied with high pulse rate *(my cardiologist says I'm fine ), brain fog, though I can do IQ tests and other mental performance if I really want to , I have internal tremmors and sometimes hand muscle spams wich are involutary *( neurologist says I'm fine ) , I can exercise but I don't feel like it and I have red rashes on my neck and upper trunk that don't ich and they go away the next day or even in minutes. I tested for known alergies and I don't have any ,except NSAID's ( antiinflamatory nonsteroid drugs) wich I don't take when I am having an episode or otherwise,so I really don't get why they appear. Alergolosits say it's hives . I don't have "visions" or hallucinations but I am pretty worked up over these episodes wich can occur several days in a row and then stop for a month or more and reappear. It's a literal nightmare because I can't do anything let alone work when these happen and it's not just sleepiness, it mental fatigue like I haven't slept for days , although I slept 7 hours prior to this. It starts in the morning over 12 hours period continous until I sleep. I don't take drugs , I don't drink coffee , I don't drink ever alchohool , but I smoke cigs . Now I'm trying to quit, from 2 packs/day I managed to get to 1 pack.

[@247365superdave]

how do I get in touch with this Dr.

[@bugzyy_P]

Im 21 years old and i firgued out through watching several videos like these and research that i have Narcolepsy with the Cataplexy. Seems that the Cataplexy didnt it start until after highschool. Feeling weak to where i have to catch myself from falling when laughing or getting excited. This is beginning to effect my life more and more as I begin to get older and time seems to fly by faster. I sleep at least 10 hours every night but miss out on a few hours due to the restless sleep. Seems like a 5 min nap does me better than a full nights sleep. So i take several of those a day to try avoid falling asleep at the wrong time. I often do fall asleep at the wrong times like in class , while driving, and even working. Wish i could go throughout my day without falling asleep. Im now in college and falling asleep in every class. It’s affecting my grades like it has my whole early years & i miss out on alot because of it.

[@jayag26]

P3P customs the college probably has disability services, which could help. You don't have to be "legally disabled", just a doctor note saying in what areas you need help. Like having classes recorded or the teacher give you more time with due dates (within reason)

[@BeeBopGaming]

I’m 34 and have Narcolepsy. It is something you need to take very serious and get Sleep studies done ASAP. It will only get worse if you don’t get help. Xyrem helps me to a extent. It got so bad for me I couldn’t drive anymore, can’t work, heard voices in my head and hallucinated often. Thought I was going crazy. Once I got the diagnoses and got Xyrem it got rid of all that. I still am very tired a lot, but it’s better than it was. I hope you have a good support system, because it can be very depressing.

[@anandrao8447]

You are not alone, but the meds can help alot. I mean a world of difference.

[@rajeevbhasin5102]

Please help me for kleine Levin syndrome

[@cornydad]

He never talks about brain injuries as a cause for narcolepsy