Continuing from where I left my last post- I had finally been given what I thought was going to be answers to my mind-boggling illness. Let's continue.....
Before I went to see the Neurologist I had to go for an EEG (electroencephalogram) to measure my brain activity and response to certain triggers/scenarios. This was definitely a new experience for me. After the EEG I then saw my second Neurologist (I had been to see one a few months prior to this but wasn't happy with him or the way he barely listened to my symptoms). The Neurologist explained that the EEG had come up normal. The next step was to go for an MRI, Tilt Test and a Halter Test.
The MRI was a fabulous experience... NOT! I have collapsable and slippery veins- in normal terms when a needle is inserted into my veins they deflate or slip away as the needle goes in. So you can only imagine how fun it was trying to put the dye into my veins... three different spots later and we had achieved the goal. However, not long after the MRI I had a reaction to the dye and was unwell. Nausea and light-headedness and then an hour drive home was exactly how I wanted to spend my day. I ended up with a huge bruise and swelling on my hand from the first needle and a huge bruise on each arm where the other needles went in. I then had a Halter Test which consisted of me being hooked up to a heart monitoring device for 24 hours. It also involved me not being able to shower for 24 hours, limit my phone, computer and laptop use and an allergic reaction to the glue on the pads. Oh yeah did I mention we discovered I have an allergy to the gel used on the pads they put on you for basically EVERY test I have had done. And yes I am even allergic to the "sensitive" ones that most people who are allergic to the other ones can use. Yeah no, not me. Anyway after an extremely uncomfortable 24 hours the wires were removed and I was free. Now to wait for the results.
Surprise, Surprise the tests came up negative except for a tiny abnormality in my heart rhythm. Apparently when I sleep my heart beats extremely slowly. Like to the point it looks like I am either dying or holding my breath for a very long time. Ok back to the story. The next test I had to do was a Tilt Test. Oh how this one was fun. Can you hear the sarcasm as I write this? Well this fun test required me to be strapped to a table (arms and legs literally tied down, oh and one across my chest) and slowly they would raise the table to eventually be at a 70 degree angle. Basically the whole point is to see if you pass out within a certain amount of time and monitor your heart rate (we were still looking at my heart and brain here). I laid on the table flat for about 6 minutes and then they began to raise the table until I was standing at a 70 degree angle. It was at this point I realised the necessity of the straps ( I legit would have been flat on my face otherwise). I had about 20 minutes to pass out before they would inject some sort of helping agent. Slowly my eyes started to get tired and my eyelids dropped. BAM! at 15 minutes I fell asleep. The doctors then lowered my down and attempted to wake me up. Oh wasn't that fun for them. I awoke with a pounding headache. I was then required to lie there for a further 5 minutes before I was allowed to hop up. Dizzy and head pounding I was allowed to have food and something to drink before being checked again and finally being released. The results from this came in and baffled my Neurologist. My results came back positive (I passed out and thus achieved the desired result) however my pulse and heart rate had remained steady and fine. The Neurologist basically said there was nothing more he could do as I had no Neurological or Cardiological issues. So the answers we so desperately hoped for were still out of reach.
Back to the drawing board we went. In December 2018 my GP referred my to a sleep specialist after I had explained my symptoms for what felt like the thousandth time. January 30th 2019 I went to my first appointment quite sceptical, no specialist had even been close to giving me a diagnoses- I wasn't getting my hopes up. After discussing my symptoms and asking my a million questions she told me my symptoms seemed to point towards Narcolepsy. Ok cool I fall asleep, sweet. Well no it isn't that simple. To get a diagnosis for this, I was required to go off the Duromine for two weeks and then undertake an over night sleep test and a Multiple Sleep Latency Test (MSLT). Man those two weeks without medication (even the wrong one) was extremely challenging, especially working full time. It was during this time I experienced my first ever episode at work. I fell asleep while patting a child. Thankfully my assistant at the time knew what was going on and informed my boss immediately. Upon waking I balled my eyes out. I felt like I had failed my children and dropped the ball. Thank God the tests where the following week.
February 17th 2019 I was admitted to Greenslopes Private Hospital at 6pm for my sleep test. About 7:30pm I was hooked up to what felt like a million wires and an extremely heavy box with the wires plugged in.
Once everything was connected and tested it was bed time. Now this had to be the most uncomfortable sleep of my life. I had itchy spots all over my body (yeah thanks gel pads) and wires stuck to the back of my head and pretty much every available spot on my head, face and chest. The hardest part was having to go to the toilet in the middle of the night. Man was that a mission! The nurse had to come in, disconnect me ( I had to carry the heavy box with me) and attempt to pee while not dropping the box in the toilet. Don't laugh, apparently its been done before. Hooked back up and ready for sleep. So my wonderful body clock woke me up at 5:30am... In came the nurse and I was then given breakfast about 6/6:30 am. I was also disconnected from majority of the wires, thank the lord! Next I was told about the MSLT. This consisted of me having the opportunity to nap 4 times throughout the day (every 2 hours) and monitoring how quickly I fell asleep and how soon I went into REM sleep (the deepest type of sleep). I fell asleep in all 4 tests, what a surprise. After the tests where completed I was free to leave, the results would come in about 2 weeks later. So now we played the waiting game.
Thursday March 14th 2019- Results Day..... When I walked into my specialists office I could tell she had news, she was nearly bouncing out of her chair. During the MSLT I feel asleep in 4/4 naps, fell asleep in an average time of 5 minutes (so about 1.5 minutes each time), entered REM sleep in 2/4 naps and had a sleep score of 17. Just a side note- a sleep score is basically how quickly you would fall asleep doing various activities. You rate them from 0 being no chance to fall asleep and 3 extremely high chance of falling asleep. so yeah 17 is quite high. Now I am going to name this wonderful woman as she has changed my life. Dr. Sarah Gleeson formally diagnosed me with Type 1 Narcolepsy (Narcolepsy with Cataplexy). I swear she was more excited with the diagnosis than I was. I finally had an answer to all my symptoms- well for this condition anyway. 3 weeks later I began taking my medication (it had to be PBS approved so as not to cost me an arm and a leg). Now the downside of the medication is that because we didn't know how I would react, I wasn't allowed to drive. For 10 long weeks I walked pretty much everywhere, unless one of my amazing friends where available to assist me. To those of you who did, you are absolute freaking angels and I love you all very much.
I finally returned to Dr. Gleeson for a check up and consultation in regards to the medication. I also had to redo my sleep score. Not only had I not had an episode for 10 whole weeks but my sleep score had gone down from 17 to 2!!!! I was functioning like a regular person again!!! The most exciting news, I WAS CLEARED TO DRIVE AGAIN. Man I was ecstatic, not driving had made me feel like I had lost my independence. And for those of you who know me, I am an extremely independent person- verging on stubborn and stupid sometimes. I was given a medically conditioned licence- understandable considering I require stimulants (amphetamines) to function correctly- and given an appointment in 4 months time.
I now take 200mg in the morning and another 200mg at lunch, as well as the Cataplexy medication in the morning. One of the downfalls is that my medication can't be taken with alcohol. Now I'm not an alcoholic but I do love a drink as much as the next person. However. I have had to stop this and I am now a sober driver for my mates. It doesn't bother me anymore, let's be honest, I'm usually too buggered to even go out lol. It is now July and I have only had 3 episodes (usually occuring when I am extremely stressed or emotional or missed my meds). Now I don't intentionally miss my meds but I sometimes forget so I now have an alarm set on my phone. I swear I have nearly given the other girls at work a heart attack when it has gone off during rest time. My bad! So here we are. Two years later and I finally have answers. I can't begin to even explain how amazing it is to be able to do things I couldn't do. I am now also down from 120kgs to 90kgs. I have lost 30kgs of the 40kgs I lost. Thank you to all of those people who have supported me throughout this journey so far, you are all incredible souls.