I see a lot of doctors - I have IBS, frequent sinus infections, loose ligaments that wreak havoc on my joints, anxiety, depression, and an overwhelming desire to sleep all the time. I was diagnosed with fibromyalgia 3 years ago which totally blew my mind. I hadn't ever considered that to be my problem. After reading about it, I felt like that was not my real problem and that I more likely had chronic fatigue syndrome. I mentioned last year to my primary care doctor that I felt like I was having memory problems on top of everything else. I had a rheumatologist, a psychiatrist, and an otolaryngologist all recommend I go see a sleep specialist. Even after all those people telling me I might want to do that, it still took me two years to actually do it.
Narcolepsy was never on my radar as far as a possible diagnosis was concerned.
My doctor suspected it at our first meeting and confirmed it with the PSG and MSLT although my MSLT was borderline at 8.5 minute average. But, as he said, normal people can't nap 5 times after sleeping the night before. And, oh, how I longed for those naps. lol.
My mind was blown. Narcolepsy?!? I didn't fall asleep in the middle of conversations. I don't randomly fall asleep at work.
But, after reading more about it, more things started to make sense. And, very slowly, as I read more about it, I realized I have a lot more of the symptoms than I originally thought. It's been about a month since my diagnosis. It has been a roller coaster.
My doctor is great, but for me, he is way too optimistic. He explained the main treatments that he has had success with and that this was treatable and not a problem. However, it hasn't been very easy at all. I started with Nuvigil at 150 mg, increased quickly to 250 mg and had horrible anxiety. I had a weekend of not taking a single nap at all - even lying in bed reading without falling asleep. I don't think that's ever happened in my entire adult life! I felt physically horrible though. I stopped Nuvigil for several days and have worked up, slowly, to half of a 250mg tablet. I'm doing alright now although not really feeling much of a difference with the EDS. In a month, my doctor wants me to try adding Xyrem. After reading the packet he gave me and reading about Xyrem on here, I am a bit nervous about trying it.
I too thought I had mild symptoms. And then I started thinking, and asking my friends how they felt during the day, and thinking about how I used to feel when I was younger. I've always been a sleepy person, but I have deteriorated to such a sad state. I don't have the energy to do anything. I can't even muster the energy to vacuum and it's been a month (with 4 dogs!). There is more hair on the floor than on my dogs. I can't fathom having a clean house or a decent yard. That does not take into consideration any of my hobbies that I no longer do - weeding/gardening, stained glass, and pole and burlesque dancing. My dogs haven't been on a walk in an embarrassingly long time. The weird part is, the changes occur over time, you don't even realize they are happening until one day you look back and realize you have no life. Luckily, I have a couple of great friends who are not too bothered by me cancelling plans on them at the last minute (IBS is a big problem for me too). I don't think I would have stayed friends with someone like me.
This week has been particularly emotional for me as I've been making a lot of connections about various side-effects I didn't think I had. Also, realizing how much I want to do with my life and how much I may never get to do. And realizing how it effects me at work. Work has become a real struggle for me. Understanding how much narcolepsy has changed me and learning how little people understand how debilitating it can be has been really frustrating.
Anyway, my whole point in starting this post was to let you know - you'll start seeing things more and more as time goes by about your diagnosis. These things may trouble you or they may not. But, it's really nice to know that there are others out there who understand. An "early" diagnosis means you may still have parts of your life left that, for others, are gone. Keep your chin up. It won't always be easy, but you're not alone.