7 Years To A Chronic Diagnosis

If I was told 7 years ago that it would take this long to diagnose my debilitating health issues I honestly don’t know what I would have done. Twenty three years old with basically a full life ahead of me. I retired from my 3 years as a CFL Cheerleader (most amazing years of my life), graduated from college from two separate programs and just began my journey into the real world. I have always been a busy girl loading myself up with work, doing promo work on the side, hitting the gym, volunteering, cheerleading or the pageant life and extremely family and friend oriented. People would always be puzzled on how a girl could have so much energy. Life couldn’t get better than this!

Well this is the part I talk about the hard stuff, the years that I have constant nightmares about. The years that if I start reminiscing about I will break into tears and thank God that I made it through. My problems arose slowly, to the point that I assumed I was “burnt out” from all of the activities that I’d partaken in during the years. I started to have a really hard time waking up and when I did, I felt like a train had hit me and I walked around like a zombie. Had no energy for extra curricular activities. My life consisted of work, eating then straight to bed…. I was even found under my desk at work sleeping because I couldn’t keep my head up. Then other puzzling symptoms came into the mix that would send us all on a wild goose chase to figure out what was going on with my failing health.

-Nausea -vertigo -overwhelming excessive daytime sleepiness -body temp irregularities skipping heart beats -fainting -weakness -cognitive difficulties- Crazy Nightmares!! -night sweats -anxiety -panic attacks -excessive weight loss -gastrointestinal issues -thin skin -jaundice -extreme hunger -bleeding gums -catapalexy (without knowing what it was) -migraines etc.

If I had a nickel for the amount of times I spent in emerge with them telling me “wow you are definitely a special case because your blood work and vitals are impeccable, sorry there is nothing we can do” I would be filthy rich. There were times we would beg them to admit me because I felt so pour and specialist visits were at least 6 months apart if you were lucky!! I had over 10 specialists humming and hawing over me at most times making me feel like I was imagining everything. My bedroom became my main scene and Drs appointments, emerge visits, specialist visits, chiro visits, acupuncture visits and functional medicine visits became our only outings. I would spend lots of time, I’m literally speaking approximately 4 hours a day researching everything and anything to make me feel better, healthier or to help figure out what was going on with me!!!! Was that considered to be a positive thing to do? No not always because it can become pretty scary reading up on certain information, but for the same reasons you need to be your own health advocate and fight for yourself when you know something isn’t right!!!! And you never ever stop fighting.

If I were to write about every detail that I have went through and learnt from this experience I would probably have two books. To sum it up I had spent 7 years visiting every specialist, tried Chiropractic, acupuncture, supplements, sending off tests that we had to pay for to the states, dietary changes and got my anxiety and panic attacks under control. It’s amazing the impact that anxiety alone can have on your health and symptoms. I was able to catch some relief through that treatment and was later to find that the medication for anxiety also was helping with one of symptoms from a condition I just found out that I had! So getting to the bottom of things. Day to day life has been bare able dealing with less symptoms but it still isn’t functional. I was still sleeping up to 18 hours a day!!!!

Less than a year ago I was sent to this special doctor that was also a Mental Heath Dr, to rule out that mental health wasn’t the main issue. I honestly didn’t expect anything good to come from that meeting but he started questioning me about certain symptoms and kept nodding his head like he knew something! He read me off a survey on the computer that he had looked up. Nightmares? Oh yes every night! Sleep paralysis? Yes collapsing with too much emotion? Yes I did before my anxiety treatment. Hallucinations? Yes and so on and so on. This amazing man said “Crystal I do not think that this is caused by your anxiety at all, in fact I believe your anxiety is stemming from this condition”. “I really feel that you have something related to Narcolepsy, I’m sending you for a sleep study and sleep dr”. I have never had dr seem so excited and confident in a possible diagnosis. Months went by I went for my sleep study which is a story in itself. I can usually sleep through anything and anywhere. The hospital always seems to bring back some not so fond memories and having to spend the night there attached to wires with my expectations of myself needing to perform well enough so that they can get the proper results. Yes us crazy people doing sleep studies worry about “performing” even though we are basically professional sleepers. Unfortunately my mind raced the whole night and the next day into all five of my naps. I felt defeated thinking nothing would come about that test… I didn’t think I slept at all.

Onto this week, I went into my sleep specialist appointment with so much anxiety and fear that I messed up my chances of finally receiving a diagnosis. We talked about my sleep study and she told me that I actually slept 8 hours of the study and fell asleep in four out of five of my naps, which is mind blowing because I swear I was awake. We went over my symptoms and how my other meds had rid me of my cataplexy symptoms which coincides with Narcolepsy and that is the treatment they use to manage those symptoms. She had diagnosed me with Idiopathic Hypersomnia pointing towards Narcolepsy. At that moment I felt relief and worry at the same time. This is a condition that is both chronic and incurable. It can only be managed by meds and that is if they work for your body and don’t cause any extreme side effects. I am so grateful that after seven years of confusion, I finally got an answer! I’m afraid some people never do…… because it can be quite exhausting dealing with the medical system. Im sure there are those that give up or don’t have the same family support that I did to get me through.

https://en.m.wikipedia.org/wiki/Idiopathic_hypersomnia

Idiopathic Hypersomnia is an extremely rare condition, which is why it’s hard to diagnose or takes years and years of ruling out other things before they look into the more rare conditions. It’s basically a form of brain damage, which effects various cognitive functions such as your sleep/ wake cycle. Where do I think mine came from? I have had seven known concussions in my life… and we are only beginning to understand the consequences that stem from concussions later on in life.

Thank you for reading this lengthy post and supporting me through this journey. I still have a watch test to do that figures out just how much I’m sleeping then the treatment begins. All I can say is I’m a very lucky girl…… This is the start of a new chapter in my life and I promise to make the most of it. Don’t ever give up.

Love,

Crystal

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