life

Narcolepsy? and big changes

So I think I’ve come to the conclusion that I have narcolepsy. I have episodes which me and C call ‘passing out’ and they happen completely randomly. I’ll pass out in the middle of a conversation and it’s even happened while I’ve been driving. The reason I think that the sleep specialists didn’t diagnose it is because my Excessive Sleepiness score was next to nothing. This is because I drink so much caffeine during the day that I’m so hyped up that I can’t possibly feel sleepy, not to be confused with being tired because I’m constantly exhausted but I don’t feel as though I could just lay down and nap which is typical of a narcoleptic.

I also have had my license taken off me after I passed out in the car (for fair reason) and waited the 6 months with no more driving ‘episodes’ to get my license back. Luckily, I seem to have it pretty much under control with caffeine and as I can feel myself beginning to pass out I can usually get myself to a decent place such as a bed or couch. Doctors have a very hard time diagnosing this as they usually contribute the symptoms to depression which I was diagnosed with a year ago with these symptoms even though I knew I wasn’t. Although I struggle to get to sleep, I will have an interrupted but long sleep if I can. If I can sleep in, I can honestly stay in bed til 3 or 4 in the afternoon easily.

I have injured myself plenty of times and concussed myself by falling asleep while standing up and hitting my head on walls or doors. Before everyone gets mad at me not telling the doctors again. I’ve been to so many appointments it’s hard to count. I’ve seen a specialist that charges $400 per consult multiple times, I’ve seen my GP a million times and all they say is “ohhh it’s probably just blood sugar or epileptic fits” and they put me on anti seizure meds that actually did nothing at all even after taking them for 3 years. I know self diagnosing is never a good idea but I’m sick of going to the doctor and them either not taking me seriously or them dismissing it as something small. I’ve seen multiple posts of people who get misdiagnosed for years before finally being diagnosed with Narcolepsy and so many people say that they still haven’t been officially diagnosed but they fit all the symptoms.

There’s not too much you can do about it as far as I know and so far caffeine is working. I’m thinking of when I get my dog this year (Malamute) I’ll try and train it to help me out. I’ve been reading up on the tasks that the narcolepsy service dogs do and due to my extensive knowledge and experience training dogs I feel as though self training is a cheaper and more practical option for me. The dog basically indicates before you ‘pass out’ and helps you get to a safer place or if you are sitting it will stand over your knees and you can fall onto the dog. This would be such a help considering I’ve hit my head on the desk. I also have very vivid hallucinations/dreams where I trash my arms and legs around and hit C. A dog as large as a Mal could be taught to almost act like a seizure service dog and put his body over mine to stop me from hurting myself like I have so many times by slamming my head into walls trying to walk places or hitting my limbs on things.

It wouldn’t be a ‘service’ dog as I don’t need it to function and would feel as though I would be taking advantage of the system if I got it properly trained as a service dog as I don’t rely on it to do everything like people who really need the dogs do. It would purely be to help me out 🙂

On another note, I’m moving in a month! Gave notice at our current flat and am in the process of finding somewhere to live down there. There’s a couple of options and there are two that I’m quite fond of. One is with a couple and has an en-suite and a walk in wardrobe and the other one is a normal room, no en-suite, we would actually have to share with another person but it allows pets. I think I’m so caught up on me wanting a dog that I am almost willing to settle for a less nice house in order to get a dog but the thing is, there’s a waiting list and I’ll also need a good job in order to have the financial stability to have one. I think that unless the people in the smaller house are really nice, I’ll go with the en-suite place as we can always move when we actually get a dog.

I should probably go to bed now it’s 4am and I have cheerleading today. 🙂

xx Cassie

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