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Living with Narcolepsy

New Member from Los Angeles, CA


#1

Hello, I’m a divorced 43-year-old newbie with twin daughters from Los Angeles, CA. I’m a Sound Engineer in sound editorial at a major film studio. Let me start at the beginning, back in 2010 I noticed I was always tired even after having slept for 6-8 hours a night. I would be tired all darn day. I even had some head bobs, like I was going to fall asleep, while sitting in conversation in a dimly lit an edit room with my editors. A few coworkers of mine were raving about how much better they felt since they got a CPAP. So, I went to my primary told him that I’m tired all the time and that I snore at night. He sent me to what I was told is the best sleep doctor in LA. My sleep physician had me come in for an overnight test and he diagnosed me with mild sleep apnea. He prescribed me a CPAP. I immediately started on that and I felt I was getting better sleep, but after a few years, I still felt tired all day long. I could fall asleep anywhere I wanted. I never fell asleep while driving or anything like that, just if I wanted to lay down, I could sleep. Finally, in 2016 I went back to my sleep specialist and told him that I feel like I’m getting better sleep, but I’m still tired all damn day. So he ordered up another overnight test along with what I think they call an MSLT. I was to stay there the next day and they’d have me lay back down every 2 hours for the next 10 hours. Anyhow, I fell asleep in about 6 mins and was in REM within 5 minutes of that…every two hours.

I was diagnosed in July 2016 with Narcolepsy EDS. He put me on Provigil but I got headaches from it. Next up was Adderal 10mgs, which didn’t do much. So he upped those over and over. Finally what worked was 40mgs of Adderal XR coupled with 4.5gs of Xyrem twice a night. Of course, I started my divorce in November, so that stress coupled with the Adderal XR & Xyrem and I y lost about 30 lbs, but I’ve gained back about 8lbs. :roll_eyes: I’ve been on this prescription for quite a while. Of course, the Adderall XR wears off around 2-4pm these days. I can take another 20mgs of the regular Adderal if needed. I try not to unless I have something I have to do that evening. I would really like to be off all pharmaceuticals. I don’t like the idea that I will be on some sort of pharms for the rest of my life.

A couple months ago, I told my sleep physician that I wanted to possibly look into dropping the CPAP as it’s going to make it really hard on me when I start to date. I was thinking of looking into the surgery to open my throat up more as I have a larger uvula. He said it’s a really painful surgery and suggested that since my apnea was mild, maybe I take the overnight test again and see if we can drop the CPAP. I did the test again and it was a waste of time as my apnea is now much worse. :scream: He said that it’s probably caused by the use of Xyrem. Great! :roll_eyes: Now I’m stuck being a hosehead and a narcoleptic. That should make it all the easier to date. (insert sarcasm here)

All this being said, I’m looking for help with my anxiety and agitation. I really feel the Adderall and Xyrem have made me robotic and agitated. I don’t want to take any more pharms, so I’ve been looking into taking CBD oil to help with the anxiety and agitation. Maybe I could give up the Xyrem all together and just use CBD oil w/THC to help with both the agitation/anxiety and sleep at night. I’d love to hear if anyone else has gone down this path. I originally thought that I’d just use the CBD oil, but now from all the research I’ve been doing, I think I’ll have to look at a 1:1 ratio CBD/THC. Of course, I’ll be looking into all this much further and I’ll bring it all up to my sleep physician soon.

Thanks for reading.
LAJay


#2

Hi there

Yes, this is sad, as I’m a widow for about 5 years now and certainly doesn’t want to grow old alone. I’m understand exactly where you come from, this is also a problem for me wanting to welcome somebody into my life again, like I’m sleeping with a CPAP, o my golly this person is going to run away!! And then Yes, I also has been diagnosed with Narcolepsy, luckily I haven’t fell asleep while driving yet but I have a problem to stay awake at work while I’m busy with my computer, and believe me, I don’t at all feel tired or drowsy, I’m awake as ever and only realized that I must how fell asleep when I (wake up) luckily I have a young girl friend sitting next to me who saved me lots of embarrassed moments and waking me up just in time, otherwise I would have lost me job for sure! I then decided to go to a specialist and the doctor then diagnosed Narcolepsy! I was prescribed with Ritalin which is very expensive and I went to my doctor and told her that the Ritalin is too expensive, she then asked me when I normally fell asleep and it was in the time span of somewhere around 9 in the mornings, so she gave me a prescription for Methylphenidate 10mg, this is much cheaper and while Ritalin is slow release to work for a whole day, the meds I now take is only for a period of about 5 hours, but this is enough to bridge my (sleepy) period. So, this is working fine for me!! and I decided to be well sure of the other person, get to know them better and let me know me for the person I am, and if it is meant to be, he will accept me with my problems…at first I was scared witless about this, but now I made peace with this problem and only pray for mister right.
I wish you all the best and believe me, this is not the end of the world, you WILL survive.
:grinning:


#3

Thanks for the kind words, Cura. I’m so happy you found some meds that work for you. I’m glad you only use 10mgs of the Methylphenidate and you don’t need a sleep aid. Maybe I’ll look into other drugs. Even though I hate the idea of trying more pharmas and it still being a stimulant. It just sucks that we have to be on stimulants the rest of our lives. It’s not good for us and it’s shortening our lives as we all continue to use them. I guess the same is true for lack of good sleep, right?


#4

Hello,

Dear Fellow “hose heads” with narcolepsy. (LOL my brother use to call me Scuba Steve)

I wouldn’t worry about someone rejecting you because of the CPAP machine.

It might help you “weed out” the ones you don’t want to be with.

I’ve had narcolepsy all my life, diagnosed and then forced off my job at 58. I’ve never taken drugs for it, just learned to adapt. Sometimes traveling, I’ll pull off the road, take a nap. Some times I have my CPAP with me and 12V converter and use it in the car.

My fiancee was not concerned at all about my narcolepsy or CPAP machine. She drove me every day after work 3hrs (8.5 weeks) so I could get Radiation and Chemotherapy…

She is a keeper - please remember there are some Really dear, kind and loving souls out there.

I contacted her first because of her authentic smile. My guess from the photo was right she turned out to be a lovely person.

LOL - I had to write her a 100 times and finally invited her to a lunch halfway. (told my brother if she doesen’t accept that I’m done with all of that)
LOL - she accepted and turned out to just be a kind hearted person…

Always look on the bright side.

Blessing and prayers for you all!

Ranger


#5

Hi there, Thanks I needed that, as I’m on the wrong side of 50 and not in a good package anymore…the age has taken it’s toll, hahaha I am really concerned about being alone for the rest of my life.
I’m so glad you found some one wonderful and a keeper as you call her, Good luck and God bless. :sunglasses:


#6

Hi there
Although it is some nights terrible sleeping with the CPAP I definitely don’t have problems to sleep. The advantage of the pill I drink is because it is only keeping my brain awake for about 5 hours, I fell asleep very quick when I turn in at night.
The sad side of my story is, when I went to my doctor for confirmation on my new problem, I sighed with relief and told her, I was very worried that there was something wrong with my brain…and to my shock she stated…but there IS something wrong with your brain, now I just have to live with it. I live my life to the fullest and except from working (which I most of the time enjoy) I do what ever brings pleasure to my life, I even started singing at Karaoke bars and this is a highlight in my life. Music keeps my going. You still got your two kids to live for. Just love them and live your life to the fullest. :kissing_heart:


#7

@Ranger I’m so happy you found someone that accepts you for who you are as that’s the best. Looks like you put in your work for her too with 100 letters. :+1: I know there are loving kind souls out there. Hopefully, we’ll all find that someone. For me, I live in Los Angeles and people here are, well you know. LOL I do have my two girls 50% of the time. That and a ton of good friends and a little bit of family here too. So I’m loved and I love others. And that keeps me going for the most part.

Looks like I’ll have to ask my sleep specialist what’s the difference btwn the Adderall that I’m on and Methylphenidate. Thanks, @Cura ! Ya, I too fall asleep w/out problem as I’m dosing myself with the Xyrem each night. Yuck! It would be great if there’s another stimulant that would keep me awake each day and at the same time be cleared of my system at night so I don’t have to take the Xyrem.

What I really don’t like about the stimulant I’m currently on (Adderall XR) is the anxiety and agitation. I’m too quick with my tongue and hurt people. I’ve always been a scheduler and planner, but now I’m over the top with it all. I don’t want to be like that…not in the least. :frowning:
I’m currently looking into experimenting with CBD oil for the anxiety and agitation. And from what I’ve researched so far, it could also help me with sleep at night…as well as pain. Has anyone else tried CBD oil? Or maybe I should start a new topic and ask that question.