Wow, Toxic Waffle. That diagnosis sounds rough, I feel for you, and I hope you are content to some extent and able to manage it perhaps well...
May I ask; how it was discovered and by what sort of Doctor?
I have both Narcolepsy with Cataplexy and what is called Idiopathic Central Sleep Apnea (which I think relates somehow directly to the Nw/C)...
Was told "the brains of persons with Narcolepsy actually function different from the average person/s"; by a top notch Neuro at a world re-known clinic.
Such was obvious, to me and for me, in my own mind already. No diagnosis had been made till age 30, and my Mother recently acknowledged that she remembered as an infant I'd stop reacting to being tickled, and would just stare off into no where. As a kid, my arms would not respond, when being tickled and around 20 I began collapsing or becoming very weak when pleasure struck, laughing/joking/silly-ness typically triggering such.
The MRI's all came back 'normal' (whatever that means? I can't begin to believe such a thing actually exist) , yet there was all sorts of wording within; regarding cervical disc degeneration and developmental, and more. The comment above by the Neuro was their response to me, and that something seems perhaps musculo-skeletal...
Always have had serious headaches which feel like my brain is swelling, throbbing, bulging, like waves of ache squeezing around my entire head; usually radiating from either my eye balls back down into my neck and shoulder/s or vice versa. Too much heat and/or sun, over excersion, or just allergy-like sensitivities (perfumes and/or certain strong smells, cigarette smoke) all can trigger such; even juices - sugars likely...
-Icing my neck and/or head, eye/s, helps with the headaches; I used to take tylenol/advil/alleve/excedrin and more, but it all began to just cause rebound headaches later and sometimes worse. Anymore, it is rare that I'll take such, unless things are long. Some headaches I've had have lasted days, and in a fierce 'come and go' manner. I've had times where I'm so used to having a dull headache that when it eventually dissipates, it is shocking like to not have it.
-I take it all day to day. Meds = none; because they've only worsened matters, be it this or that. Taking Vitamin D and Fish Oil, 16oz Coffee, plus a lot of food (medicine) ingredients like Lemon, Turmeric plus many other Indian spices, Cinnamon, Cocoa, Mushrooms of all sorts and also all sorts of herbs.
-Recognition and understanding seem to have helped tremendously, yet just to a point; being able to note something for what it may actually be and/or relate to, rather than just letting it occur without being able to connect it with anything.
-Paying close attention, as much as I can comfortably, to myself and the atmosphere/s or environment/s which I go in, has helped with the above.
-Following a pretty 'normal' routine and schedule, nothing too strict but keeping things in order basically, has helped to a point. That really is just, trying to both go to sleep and awaken, within the same couple of hour/s span day to day (falling asleep between 11pm-1am and awakening between 9am-10am). Allowing myself to go out of that now and then but, really trying to not nap at a point that will throw that off.
-Eating in a similar way -schedule wise.- Also, cooking around 90% of what I do eat, going both Gluten-Free and 'mostly' Dairy-Free; has been hugely beneficial. Doesn't appear that I'm necessarily allergic to Gluten, nor dairy, it just seems the food tends to either be of a higher quality and/or simply with less 'refined/processed/additive'd' substances (which just make things cheaper and/or longer lasting). So much inflammation seems to have left; yet unfortunately, such may now just present itself in different manners and/or ways, here and/or there...
-The above has helped the fatigue, perhaps sort of return to tiredness. For years, prior to discovering what it was going on, fatigue had plagued me. Also, I see an awesome Korean D.O. who does both Accupuncture and Cupping, which along with the diet now for around 8 months, have done wonders.
-Stress and anxieties can severely effect my stability (not to do with walking), so I try hard to avoid them. This is basically, being best friends with a computer and not socializing hardly, only in comfortable places and not out in public hardly.
-Having a career has never been manageable for me, yet I tried so hard and when it seemed to be approaching the Cataplexy interfered. If the right thing appeared itself somehow, only 'perhaps' could I manage; and such doesn't seem likely either way.
-Being thankful for what I do have and knowing things can be, and are worse for many others, helps me. Really just paying a lot of attention to whatever I'm interested in, yet trying to stay in a safe boundaries at all times, and remembering that alone by just being within the comfort of what is still so much 1st world versus 3rd world; helps me get by...
The best of luck to you Sir. And, don't hesitate to ask anything.
