As with most medical conditions, the path to achieving answers to my mysterious illness was in no way smooth and easy. Narcolepsy still has no known cause, however research has found a strong correlation between certain Genes and people who suffer from Narcolepsy. As a teenager I found it hard to get out of bed each morning but so hard to actually go to sleep at night. Nobody thought anything of it- why would they? Teenagers are known to be "lazy" or "night owls". As I got older, I experienced days where I physically couldn't get out of bed, a higher occurrence of sickness, weight gain and intense headaches and migraines. At the time these symptoms started to occur, I had just begun studying my university degree. We will cover that in the future. Basically I had moved away from home, was studying full-time, working and just having to keep going. I gained 40kgs in the space of two months, my boobs grew two cup sizes (I know you're probably thinking "Hell yes, who wouldn't want bigger boobs? The answer is me) and I began to feel even more disgusting. Here I was, a 19 year old girl who weighed 120kgs and now had 14F boobs. No matter what I did I could not lose the excessive amount of weight I had gained. Eventually it got so bad I realised I had to try and find some answers. Thus begun the long journey to diagnosis.
The first idea the doctors had was that I might be suffering from hormone imbalances. My symptoms lined up. I thought sweet! That was an easy fix. Yeah no. I began seeing a Gynecologist in 2016 who changed the pill I was on. He explained the pill I had been taking contained a higher level of the male hormone Testosterone. This explained the excessive weight gain in such a short amount of time and the boob boost. My AMH (anti-mullerian hormone) tests came back with a result of 5.6 which is considered extremely low. The Gynecologist wanted to see how my levels went on new medication. He prescribed me a new pill and instructions to come back in 6 months time. This cycle continued for the next year with AMH tests 2 weeks before each appointment. Nothing seemed to have changed. During this time I began to have what I came to call "episodes".
The first occurrence of these episodes was at CMC (Country Music Channel Festival), March 2017. I was heading back to camp with my boyfriend at the time, my friends and their children. All of a sudden I complained of a headache and BAM! I was on the ground, seemingly unconscious. I can only imagine what it was like for the people who were with me when this happened. I came to after about a minute, we drove back to camp and went to bed thinking how weird that fall had been. Little did we know this was the exact moment my life changed forever. I continued to have these episodes every night for 365 days. Sometimes I would have more than one in a night. I would complain of a headache or not feeling well, next minute I was on the ground. My boyfriend only got about 3 seconds warning before I hit the ground. He would try anything to wake me up, shake me, talk to me, nothing worked. Eventually I would come too (it seemed like forever but was never more than 3 minutes). When I regained consciousness I would tell him I could hear everything he was saying and feel everything he was doing but I couldn't respond. I would then become so tired, I went to sleep. The next morning he would tell me what had happened because I began suffering from loss of memory beginning just before the episode and ended upon waking the next morning. I have to take a moment to give a shout out to Luke. He was a goddamn angel and the only reason I didn't end up with a severe injury. I can't even imagine the toll, emotionally and mentally, that having a girlfriend with unexplained loss of consciousness would have taken on him. So thank you, for the love, support and care you gave me over this time. You played a huge part in my journey.
In September 2017, during an appointment with my Gynecologist, he explained my AMH levels had not changed and I hadn't lost any of the weight I had gained. I spoke to him about the episodes I had been experiencing and the symptoms that went with them. He decided to prescribe me Duramine in the hope it would help with the weight loss. Over the next 6 months, my episodes began to lessen. I was only having them once or twice a week! Woohoo! Finally results! Or so we thought. At my next appointment, I explained the change in the episodes as well as the fact I had begun to lose the weight (excruciatingly slowly). He was impressed with the weight loss but unsure about the reason for the change in the episodes. He gave me a new prescription for Duramine and a referral to see a Neurologist for the episodes. The next step to answers- we bloody hoped!
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