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i believe the only ppl that can diagnose narcolepsy is a true narcoleptic!
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i have just been readin the letter on the front of this website written by Deanna and it has just about brung me too tears:)this is the first time i have heard sum1 explain exactly what i try to explain to others only 4 them 2 either pretend what im going on about or totally misinterpret what i have been explaining.Recently i have met with a new doctor whos taken over my narcolepsy specialist and he is trying to tell me i have been misdiagnosed but i know i definetly havent!it is driving me insane i got diagnose at 16 after my mum trying for a diagnosis from me being a couple of months old.What sort of baby except a narcoleptic sleeps for 14 hours a day and doesnt wake for feeds,i did.My mum says i would wake once after 14 hours and fall staight back asleep while having a bottle and then that was me for another 14 hours she felt like she didnt even have a newborn lol.and im not much different now i naturally sleep for about 12-14 hours if i am woke by someone else and not naturally i feel ill because i have not had enough sleep,the last year or so i feel like things are worsening in my symptoms i have all 4 symptoms of narcolepsy which drives me insane.If im put on the spot,get angry,laught too much or even just like now iv had 2 stop typing because my left hand and arm feels too weak too carry on,my neck drops all the time, if i get emotional or am explaining someting too people especially anything thats personal and touches a few of my emotional strings i slur my words because my whole mouth meaning my neck,tonge,jaw and lips take a life of their own it feels like someones forcing jumbled up words out of my mouth,sometimes when my jaw drops with my head my tonge hangs out too which is incredibally embarrasing!i trance all the time it feels like. i got told i have over 100 seizures a day caused through all my symptoms of narcolepsy beacause its an over load to my brain when all the symtoms happen so my brain shuts it self down,sometimes this makes life unberable.The worst thing is it interfears with the whole aspect of life:( i hate it when i go out feeling as fine as a daisy plan too do something or go somewhere then that sudden feeling of overwhelmness comes upon me E.G-
Tiredness so much that i feel i could sleep forever,the only way to explain it is i feel like iv not slep for about 48 hours
trancing makes me feel like im in a globe and the world is just moving fast around me and im just stood/sat there and when itry to move i feel like im in slow motion(sound crazy i know)
sickness-feeling that horrible sick feeling that your abouyt too throw up any time because your body/mind cant deal with the pressure of being awake anymore(when this happens i start too feel physically ill)
Weakness-you get so lathargic that you barely feel you can move let alone look after my 18 month old son (lucky i have a great husband to be and a great mum)
embarresment of people talking to me and i really am intrested but im so tired that no matter how hard i try too listen it seems to go in one ear and out of the other even when its something important
Memory loss this is incredibly embarresing when you ask one person the same thing over and over again and their response is do you not listen to anything woman? or when i go to a shop and forget what iv gone for and i am constantly loseing things because i forget where i have put them
wild dreams my partner hates these he sometimes can tell me what ive been dreaming about because i talk in my sleep most nights,i also hit out and sometimes answer him if hes trying to wake me but i never remember this,most morning s i can tell yo about my dreams because there that intense its like iv just been watching a movie,sometime i get that scared in the night that i have to grab my partner in bed and snugglt as close as possible for comfort because im not just scared i am litrally terrifed
Paranoia which also entails me hallucinating so i think,i get so scared sometimes that i think theres someone in my house and i have before now had to leave the house if i am on my own because im that scared,this is because i get so tired and my mind starts to play tricks with me
voices i hear people whispering my name and sometimes it sounds like someones talking muffled words right next to me,this entails the hallucinations and also happens when i am so tired i can barely function just like i feel right now while im writing this
Not being able to sleep because i am so over tired my eyes are pinned open(thats how it feels)this is so aweful when my partners been asleep for 2 hours layed next to me and im tossing and turning knowing its only going to make my day worse tommorow or im going to sleep even more of the day away!
I am writing this hoping somebody with narcolepsy will reply to tell me their view on what i am explaining and if they have to struggle everday to function properly or if i am on my own with this,i have also decide while writing this to take it to my neurologist to hope he can try to understand what i am trying to explain and what i have been explaining all my 21 years of life to numerous doctors that just dont get what im sayin.
If you have read this thankyou if you could reply that would be even better my email is linzi.jones@hotmail.com if any narcoleptic or any1s family who have a sibling with this condition wanna chat about it please msg me back
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