Third: I Crash and Burn

The Trazadone helped with insomnia, I was able to fall asleep again around 11 pm but I was still tired when I woke up. I attempted to regulate my sleep schedule thinking that being out of work was the cause. So I slept from 11 pm until 8 am every day, waking up at a “reasonable hour” or with the sun to try and reset my circadian rhythm. Still, I was falling asleep, taking naps every day and the naps not being refreshing.

Photo by Hayley Catherine on Unsplash

I went back to my PCP again around May 2019, this time only looking to get meds for depression and annual bloodwork. I answered their 20 questions about WHY I thought I had depression ranging from “do you have suicidal thoughts?” to “do you feel down?”. I answered all the questions honestly, emphasized my fatigue and my lack of desire to do the things that I loved. The doctor prescribed me with Fluoxetine – an antidepressant. I left feeling hopeful, that at least I could check off one item from my list of possible diagnosis/causes. Even if I didn’t fix my fatigue, I could at least get my stress level and depression under control.

I went to a therapist which immensely helped with my depression and anxiety. She used a form of cognitive-behavioral therapy, which turned out to be just the thing I needed. It reduced my anger, stress, and self-deprecating thoughts. Sadly, she was unable to help with my fatigue or explain it.
If you would like more information on my therapy experience, let me know and I will explain more!

At this point, it was around November/December 2019. With the holidays approaching, social activity was becoming more often. I would spend every social gathering attempting to not fall asleep. I would drink copious amounts of caffeine to help, but it did not affect me at all. I regrettably had to miss a few holiday parties because I could not wake up enough to get out of bed. My stress was also increased during this time because I had to move which caused some financial stress, emotional stress, and relationship stress. Along with my significant other/partner’s emotional stress, we both became stretched thin.

When I wasn’t packing, I was sleeping. I could only pack for about 3 hours a day if that, and sleeping the rest of the day. If I wasn’t packing, I was researching apartments, making phone calls, but again, I could only do that for so long before having to sleep. I had to put all of the household chores on my partner which did not help with my guilt and depression. The only time I would be awake is between 5 pm and 8 pm so I could spend time with my partner, but that added more strain to us because we both wanted more time together. I started to collapse under the stress, fatigue, and depression.

I posted on Facebook about my frustration and a friend in the medical field offered to look over my blood tests to see if there was any indication about what could be causing my fatigue that the doctor may have missed. I spent days comparing and researching my blood test results trying to find a reason or something that would narrow down my list of possible diagnoses. (More on my blood tests later)

I was angry, confused, frustrated, mentally exhausted, and hopeless. Even with my new depression meds doing what they could, I was crumbling. I wanted more than anything to do the hobbies I once loved, and thanks to the newest meds, I started to love again. I wanted to sew, paint, play video games… but I couldn’t keep my head up long enough to do any of it.

Next on Finding my Diagnosis – Change of Scene brings hope?

Second: Reaching Out

The list of conditions that I had narrowed it down to was: hypothyroid disorder, abnormal estrogen/testosterone levels (or levels that weren’t right for me), chronic fatigue syndrome, narcolepsy, circadian rhythm disorder, depression, etc. So many conditions could be possible, but all of them needed to be diagnosed by a medical professional.

Photo by Jackson David on Unsplash

I contacted my PCP (primary care physician) around November 2018 and requested a consultation, even though I had my blood work done in July 2018 and everything came back “good”. When I met with my PCP, I explained how much I was falling asleep, how tired I was, and anything symptoms that might be linked to an item on my list. My doctor talked to me for a while, asked about my exercise habits (non-existent), my diet (average hotdog & chip eating American), and stress levels.

I explained how I was falling asleep while watching TV, studying, too tired to even cook myself a healthy meal let alone exercise – hence the unhealthy habits. My doctor laughed and said getting tired is just part of getting older. I’m 30 now so I’m not going to have as much energy. He suggested to change my diet, get out of the house more, destress, reduce alcohol, etc. He also stated that studying is boring as is watching TV, and waved it away. He handed me a printout of a specific diet plan that he stated I should follow for a month and if that still didn’t change anything to come back and see him.

So, I did the food prep, increased my veggie intake, a variety of protein from meat and other sources, more fruit, and didn’t eat any junk food. My energy levels got worse the first week, but the second week they got better than before the diet change. I also completely cut out alcohol, cut out caffeine (thinking that maybe I had developed an intolerance), and spent more time outside thinking it was a Vitamin D deficiency. By week 3, I was the same level of tired before the diet adjustment. However, at this time I started to develop insomnia. From the hours of 10 pm – 4 am, I was wide awake. But I was still falling asleep any other time.

I even got a part-time retail job to try to add a sense of normalcy and routine to my life. Even with being in public, and moving quite often, I still struggled with my fatigue. If I wasn’t careful, I would’ve been fired for falling asleep on the job.

I went back to my PCP around January 2019, explained that it didn’t work and he stated that he “wasn’t surprised.” Looking back I should’ve gone to a different doctor right then and there. However, I was desperate and I didn’t want to start from square one with another doctor. I explained my insomnia, and he prescribed Trazadone – an anti-depressant that assisted with a sleep aid. He explained that maybe it was just because I wasn’t getting a good full night’s rest, which seemed logical to me.

At this time I was taking standard oral birth control and escitalopram for anxiety. I had been thinking about going on anti-depressants as I was sure I had been depressed for many many years but was always afraid of the side effects. During this time my significant other/partner was living with me, so I was open about my adjustments to my medications and asked him to bring to my attention if any side effects were worrying. I expressed my fears about taking a sleep aid and worried about what effect this would have on me, but I was desperate for the energy to even do the dishes. Imagine that.

It wasn’t abnormal for me at the time to cry just because I didn’t want to sleep my life away. I thought I was lazy, depressed, and weak for not being able to handle every day normal activities. In all honesty, my partner/boyfriend bounced between, supportive and understanding, to laughing because this IS a part of getting older. He is quite a bit older than me, so age difference has been a joke between us.

Once the morning came when he forgot to take his ADHD medication and was at work, he called me on his lunch like he always did, and expressed how he had an energy drink and 4 cups of coffee and was still struggling to stay awake. That is the moment when we both opened our eyes and realized this is what I was dealing with EVERY DAY. The more he described how caffeine had no effect and he was nodding off while standing, it was my AH-HA moment. This wasn’t normal!

Next on Finding My Diagnosis – I crash and burn

First: The Backstory

I am a 30-year-old female who can fall asleep while doing nearly anything. I actively noticed a decline in how awake I felt during the day around July 2018. In reality, it had likely been happening since around 2014, if not earlier like in high school. I always attributed my fatigue to stress, side effects of medications, depression, fluorescent lighting in office spaces… all of the normal factors that adults attribute or blame for being tired. Even back then, I would have to drink 4 cups of coffee just to try to function. At times, I would combine an energy drink, coffee, tea, and soda in a day and still fall asleep at 6 pm.

Photo by Jasmin Chew on Unsplash

In August 2018 I left a stressful and emotionally taxing job to attend school full time. My goal was to get a certificate in medical coding, creating a new career path for myself that would be less stressful and in the end, would be better off financially. I found in my previous job that researching medical conditions was interesting to me. I thought Medical Coding was a great way to be close to the medicine, which I found interesting, without having to deal with my fear of blood.

I started taking classes that changed my stress but did not reduce it. Without having a job to wake up to every day, and not be a morning person, I would sleep until 10 am every day and fall asleep around 2 am. Even with sleeping an average of 8 hours every night, my sleep app told me that I wasn’t getting very restful sleep. I would be trying to study medical terminology and fall asleep on my books. I would be watching a movie with the boyfriend on the couch, and fall asleep. I told myself it was because I wasn’t working, stress, and that studying was boring.

I dismissed my fatigue for a few months until I got so tired I slept 20 hours for 2 days in a row. I then realized just how bad my fatigue was getting. I did some googling/research to try and find some answers or solutions on my own. Since I was becoming familiar with some medicine and terms because of my schooling, I was able to understand and read medical journals and studies to narrow down the possible problems. For the average person, it is always good practice to NOT do this as there were a few times I thought “I have a tumor”, but desperate times…

I am still trying to find the answers as to what I have and the cause of my symptoms. My excessive daytime sleepiness, some stomach issues, and low libido (to name a few) are somethings that I don’t feel is “normal” and I’d like to find answers for.

After struggling to find a diagnosis for a year plus, I thought it might be helpful to others to hear about my story and the struggle involved. Maybe through my story, you can find a way to get a doctor to hear you or find an answer you may not have even been looking for, or through my information and sources find out what you or a loved one might have.

**I am not a medical doctor by any means, and even though this blog/journal may assist you, it is not intended to diagnose or suggest treatment. Any tests, forms of treatment, or diagnosis should be done or advised by a medical professional. This is about MY experiences, opinions, and stats related to me. Names (including my own) are changed to protect everyone involved. Any information I reference I will do my best to include sources and links so you can read more if you choose. To the best of my ability I try to find information that is credible or found in multiple trustworthy places.

Next In Finding My Diagnosis – Reaching Out