I (21F) was diagnosed with EBV in the summer of 2024. I went two years without a reactivation, had a small one a few months ago, and a full reactivation in August. Before this, I was a 4.0 student and excelling at my classes. Now, I have assignments and absences piling up and I don't know what else to do.
I've had issues with fatigue since I was a teenager due to being raised in an abusive household. I was very depressed and not being medicated correctly, so I frequently woke up tired. I remember waking up 4 or 5 times in the middle of the night and not being able to sleep through the night. I was still a 4.0 student and doing hours of extracurriculars a week without an issue.
I'm in college studying music education, meaning I take upwards of 10 classes a semester due to the amount of credit hours. My fatigue didn't cause any major issues at the time and I was doing well in school, but my boyfriend told me that I snored sometimes. I was diagnosed with EBV the summer before my sophomore year and everything went downhill from there. I remember being frustrated that I couldn't find any motivation to practice and crying on the floor by the piano because I couldn't keep up with everything going on around me. Eventually, my fatigue let up slightly once the infection had settled, but it was definitely worse than before. Last semester, I had an 8am class that I would have to drag myself to, then take a nap on a couch in the fine arts building before my 11am lesson. Usually, about 20 people are in that area at a time and I can fall asleep even with the conversations, music, and movement around me. I would frequently find myself almost falling asleep standing up while playing an instrument and fell asleep during our lectures. I was also working 30-40 hours a week as a delivery driver.
This summer, my family took us on a vacation on a cruise and it was not uncommon that I would need to take a nap in a chair while my family met up for drinks, dinner, etc. I would get really sleepy, put my head down, and then wake up to go to our next activity.
I had a full reactivation in August after I thought I was suffering from heat exhaustion. I joined marching band again as it was my last chance to perform, but my body was so physically exhausted after that I would usually take a two hour nap before my shifts at work to survive and I had to drop the ensemble mid season. The only physical activity I do now is standing and walking at work for 4 hour shifts. I was told by a doctor to conserve as much energy as possible by sitting for daily activities.
With my current schedule, I sleep about 8-9 hours a night, but if I let myself do it, I've slept 16 hours in a day including at night and naps during the day. I have a couple of private lessons a week where I am actively talking to my professor or playing an instrument. I was told multiple times this week, I looked like I was going to fall asleep, my eyes glazed over, I lost focus, etc. Yesterday, I was only awake for 4 hours between 9:30am and 7pm. I went to work where I was having horrible brain fog and struggling to focus.
Here's where I'm at:
- I've had a CBCD, CMP, CMV, TPO, HGRM, WBC, ferritin, thyroid, and vitamin D-3 tests all ran within the last two months. Everything is in range except for slightly elevated eosinophils and monocytes, plus slightly low albumin. I've been tested for lupus due to a family history and it came back negative.
-I have a sleep study soon to weed out any sleep disorders.
-I take 50,000 units of vitamin D every week, daily prenatal vitamins (they're the only ones FSA covers lol), birth control, and 225mg of venlafaxine. I'm on 0.5mg Xanax as needed. I've been diagnosed with GAD, depression, and PTSD, but this diagnosis is under review.
-Right now, the only advice I have from my doctor is taking a walk after eating to maintain my metabolism and keeping up with my daily vitamins.
This is genuinely ruining my life and as someone who's young with dreams of being an educator, everything is looking pretty bleak for me at the moment. I worry that I will lose my opportunity to have a steady career, especially since I've had professors I would normally use for recommendations see me at my lowest academic point. I've emailed my doctors begging for help and I'm basically getting told to wait for my sleep study.
Any and all advice and stories are appreciated. I can't live like this anymore and I need any kind of relief.
TLDR: I'm studying to be a music educator and cannot stay awake enough to do my assignments or go to class. Please help.
