The Head ..

So I take Modafinil for my Narcolepsy, the bad news is that I’m only 26 and I’ve only been diagnosed for a couple of years, but yet I’ve already hit the maximum dose!

The drug is fairly ‘new’ over here in Aus so every time I need a new script the government has to approve it via my ‘specialist’ (I use that term loosely because he’s actually a respiratory spec who gets his knowledge about narcolepsy from the internet!   …Gotta love the public hospital system!)

ANYWAYS!

Earlier this year I started having frequent incredibly painful palpitations that make me clutch my chest and gasp in pain, I mentioned this to my ‘specialist’ just in a random conversation about my health in general and all of a sudden he decides it could be because of my meds.

Over here in Aus there isn’t much of an option with what meds you can take for Narcolepsy, the preferred medication is actually dexamphetamine sulfate but if it poses an unacceptable medical risk (which it does in my case) you get put on Modafinil.

So when someone says that they think your heart is suffering because of the medication you need to function on a daily basis it’s kinda screwed up and alarm bells start ringing in your head!

The Heart ..

I was referred to a cardiologist to investigate these palpitations, and when I described my basic version and compared it to his ‘mechanical’ description they matched! The cardiologist believes that I may have ectopic heartbeats which in most cases don’t need treatment ( I’m currently awaiting results on this) He instructed me that if his guess was correct that I would not have to worry about changing my medication.

Today ..

I had one of my painful palpitations today at work, and I felt really out of it and quite faint and shaky so I went to visit our nurses bay to get my stats checked (I work @ a radiology department @ a hospital) the nurses checked me and found my heart rate to be racing and my blood pressure was sky rocketing. I said it was probably because I panicked when the episode happened but they instructed me to rest for a little while. So after an hour of lying down in the dark the nurse came and checked my stats again, and hey were actually worse this time!

I was advised to see my GP and get my blood pressure checked asap, the GP didn’t particularly care about my high blood pressure but my racing heart rate got me hooked up to an ecg which confirmed an irregular beat and 130bpms. He instructed me to go on a Beta blocker to ‘fix’ this.

Side effects of the beta blocker are;

Weight gain - if i put on weight my medication dosage won’t work the same, and i can’t take any more!

Tiredness - Uh hello! I have narcolepsy and I’m already struggling to stay awake!!

Vivid Dreams - Once again, I have narcolepsy I have vivid dreams all night, that wake me frequently already.

Low Blood Pressure - Causing dizziness and disorientation and possibly blackouts, once again something I have enough trouble controlling already!

So I’m meant to take a beta blocker to slow everything down but then take my medication to speed things up.

WTF!!!

So that’s my dilemma, 2 major systems/organs that aren’t cooperating with me or with each other!

I feel like a coldhearted mean bitch sometimes, when someone walks up to me and whinges about how tired they are, due them going out and partying all night or whatever. I know they are looking for some sort of sympathy or friendly understanding but sometimes I really can’t…. lately my signature response has changed to ‘…welcome to my world…’

Let me explain..

What’s the tiredest you’ve ever been? Blinking slowly, barely able to hold up your head, too tired to move, but fighting to stay awake for just a few more minutes…

Imagine feeling that way EVERYDAY. Imagine that at some time during the day, you know that you’re going to have to really fight to stay awake. At some point during the day, you may even have an overwhelming urge to sleep, which means you’ll have to drop whatever you’re doing and sleep.

Even if you’re driving. (In fact I’m not allowed to have a license at the moment)

Even if you’re eating.

Even if you’re in the middle of a conversation with your boss at work.

That’s just part of what narcolepsy is. Now for the clinical definition:

From the National Institute of Neurological Disorders: “Narcolepsy is a chronic neurological disorder caused by the brain’s inability to regulate sleep-wake cycles normally. At various times throughout the day, people with narcolepsy experience fleeting urges to sleep. If the urge becomes overwhelming, patients fall asleep for periods lasting from a few seconds to several minutes. In rare cases, some people may remain asleep for an hour or longer.

Narcoleptic sleep episodes can occur at any time, and thus frequently prove profoundly disabling. People may involuntarily fall asleep while at work or at school, when having a conversation, playing a game, eating a meal, or, most dangerously, when driving an automobile or operating other types of potentially hazardous machinery. In addition to daytime sleepiness, three other major symptoms frequently characterize narcolepsy: cataplexy, or the sudden loss of voluntary muscle tone; vivid hallucinations during sleep onset or upon awakening; and brief episodes of total paralysis at the beginning or end of sleep.”

Sometimes it’s a daily battle to live life always tired. Running errands, working, interacting with my family/friends, even simple things like eating, showering etc - all take an extreme amount of effort sometimes because you’re fighting that urge to sleep. It’s exhausting - no pun intended.

People always assume that narcoleptics get plenty of sleep. Wrong! Most of us don’t sleep well at all. In fact, I often experience what I dub ‘Insomniac week’ every now and then. I just don’t sleep. I hate those weeks I feel like I am a cast member in a zombie movie!

Oh and I suffer mood swings sometimes too, and they swing wildly and fast, and NO it’s not cos I’m a woman or have my period!! It’s because I’m tired!!!!!God forbid! Just like any other person on earth, when you’re tired, you’re moody!! It’s a natural human response!

So next time you stay out all night, next time your sleepiness and lack of energy is purely self inflicted, forgive me if I don’t fawn over you.

Narcoleptic defines the person with narcolepsy as a person who is defined by the condition, whereas a person with narcolepsy puts the emphasis on the importance of seeing the person first and secondly the condition.

So are you a person or a condition, you make the choice!

Mariah Carey needs 15 hours of Sleep a Night

Health.com compiled a list of celebrities last week that all have difficulties with sleep, i.e. they don’t get enough of it or it’s obstructed by a parasomnia. 2 out of the 26 celebrities have narcolepsy, namely Jimmy Kimmel and Nicole Jeray.

Natalie Pinkham, British sports broadcaster and reality show competitor suffers from sleepwalking, night terrors, anxiety before sleep but after a visit to a sleep clinic in 2009, and the help of some medication she now sleeps soundly.

Restless Legs Syndrome: Keith Olbermann (US Countdown) and Jon Stewart (The Daily Show) suffers from Restless Legs Syndrome (RLS).It’s an absolutely exhausting condition. Although I only have gone through periods of RLS (in combo with other glorious parasomnias such as sleep paralysis, night terrors etc), I remember waking up in the morning, looking around my bedroom and being unable to move. My body was in pain as if I had been running a marathon or participated in an all-night boxing round. Eventually, you become more conscious and irritation and frustration starts to build up inside especially if you are trying to keep an appointment or get to work. There is nothing you can do but surrender – cancel/reschedule that appointment and get some rest. It’s ironic that you need to get some rest after a whole night’s “sleep”.  [QoS]

Sleep Apnea: Reggie White (NFL player) unfortunately passed away in 2004 at the age of 43 due to pulmonary sarcoidosis. He also had sleep apnea a sleep disorder that is a relatively common condition that affects men more than women. In the UK, it is estimated that around 4 in 100 middle-aged men and 2 in 100 middle-aged women have Obstructive SA. 3 in 4 remains undiagnosed. Could there be a link between sleep apnea and sarcoidosis? or between sleep disorders and sarcoidosis?

Rosie O’Donnell discovered that she suffered from Sleep Apnea after years of “loud snoring”. A doctor discovered that O’Donnell stopped breathing more than 200 times a night, sometimes for about 40 seconds.

Famous Nappers: Leonardo Da Vinci supposedly slept exclusively using power naps i.e. 15min naps every 4 hours. Apparently, it is possible for a human being to survive on 1,5 hours of sleep a day according to research but it’s not sustainable for longer than 2 months. I wonder where this snippet of information originates from? I can imagine that he worked and slept in this way whilst being immersed in a project, invention or only to return to a normal sleep cycle after completion. Thomas Edison called more than 3-4 hours of sleep a night a waste of time and is also known to have relied on cat naps. Winston Churchill is also a world-famous Cat Napper but every  time I point this out in social situations Martha Stewart also seems to favour a 4 hours a night approach. There are not enough hours in the day to sleep more…perhaps it was a good thing she was sent to prison for a 5months.At least she got the opportunity to catch up on her sleep.

Insomnia due to Hectic Lifestyle: Rene Zellweger, James Mercer (from The Shins),

Celebrities who have relied heavily on medicated sleep: Eminem, Michael Jackson, Heath Ledger

Difficulty sleeping because of Children: Jennifer Lopez, Brooke Burke, Brad Pitt

Diagnosed Insomnia: Cheryl Hines (Curb your Enthusiasm, HBO), Justin Chambers (Grey’s Anatomy), Louise Bourgeois

Outstanding Sleeper: Mariah Carey takes sleep to an entirely new level. She needs to sleep 15 hours a day and keeps several humidifier in her bedroom to ensure that her voice will be in tip-top condition to perform. She must be sleeping as much as Queen of Sleep. Only the majestic cat breaks her record with 18h of sleep a day.