z

Young Writers Society


E - Everyone

Path to Diagnosis Part One

by DeliriumNervosa


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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Sat Jun 27, 2020 11:57 am
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LittleLee wrote a review...



Hi DeliriumNervosa, I'm Lee and here to drop off a review.
First of all, I just want to say I can relate, at least partially. I struggled with my weight for a few years, hated myself, was fat-shamed, and generally felt awful. It led me to becoming anorexic, and I also began over-exercising in order to lose weight. That still hasn't left me. It's horrible to hate yourself, and since you have/had a condition on top of everything, you must have felt worse. I'm sorry this happened to you. <3

As this is very personal and clearly not a work of fiction, i am not going to be commenting on any incident or such other than to say you can always shoot me a PM if you want to talk.
This piece was wonderful. The pain you felt, the despair, the false hopes, everything was conveyed beautifully. It made for easy reading, but I was nonetheless moved.
I'm also impressed that you decided to bring this illness up to spread awareness. it's a beautiful thing to do; you're a good person.

The only suggestion I can make to improve this piece is to use paragraphs more often. Partially because people may look at this, see huge chunks of text, and decide not to read it, which would be a real pity, so break up the larger paragraphs into smaller ones.

Narcolepsy still has no known cause, however research has found a strong correlation between certain Genes and people who suffer from Narcolepsy

After "cause", there should be a full stop, not a comma.

There's no need to capitalize the first letter in "gynaecologist".

That's it. Once more, I want to express my admiration and extend support if you need it. Keep writing! I'll stay up to date when you do if you tag me.
Good luck!
- Lee






Hi Lee,
Thank you so much for your wonderful response! I am so sorry it has taken me so long to reply! I have just begun holidays and have been out of wifi service for a while haha. I am so glad you have enjoyed reading it. I hate that you have gone through something similar but all I can say is you are a strong person and you can do this! I will tag you in any future postings (if I can figure out how to do that lol).



LittleLee says...


To tag someone, just put an "@" before their name, like this:
@DeliriumNervosa



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Sun May 31, 2020 5:20 pm
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Hkumar wrote a review...



Hi DeliriumNervosa!

This felt like a very personal piece and I'm not sure if this is something you are personally experiencing. I hope you are doing good now.
I have read something about Narcolepsy before and your writing made me search a bit more on it. I think it's a very good thing when people come forward with such topics in front of everyone. This way more awareness can be created on such problems and how the people who suffer from it have to deal with so much trauma.
This episodes that you talked about seems to be very scary and having them again and again sounds like a nightmare. Especially if you are all alone and something like this happens, it will be so scary. Having someone like Luke around is a blessing. He seems to be very caring and affectionate.
As for the work I can suggest you can make it look more clear by breaking some long paragraphs and providing uniform spacing.
I do hope everything turns out good. The medicines you talked about in the last had positive results initially. I hope they continue to work for the better. <333

Please keep sharing your work and keep writing :D






Thank you so much for your review! Yes this is something I personally struggle with but the reason I write about it is to bring awareness and show others this hidden illness. I am currently doing well and I am pretty much stable at the moment :)

I hope you keep reading my work in the future :) <3



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Wed May 06, 2020 6:07 pm
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Necromancer14 wrote a review...



Well, here I am with the review you requested!

Here's my review:

Okay, first of all, this was quite interesting. It reads like a diary, and that was an uncommon spin to it, and that's always fun to read. I really enjoyed reading it! I've never heard of Narcolepsy, but it certainly doesn't sound fun. The only thing that I would say that you could improve on would be to make the main character have more personality; what is she feeling about all this? You get SOME personality obviously, but I think it would be even better if you had more. Maybe add how she reacts to these "episodes" and other symptoms. Anyway, it's a good beginning to a story, so keep writing!

Well, that's my review! I hope it was helpful.






Thank you so much! I will definitely have a look into that! Yeah no Narcolepsy isn't the most amazing thing in the world hahah I do have a Part Two in the works as well.

Thanks again for your review!




You own everything that happened to you. Tell your stories. If people wanted you to write warmly about them, they should have behaved better.
— Anne Lamott