Avatar universal


Hi everyone! I am new to this website and this is my first post. It is going to be a long one, but I am hoping some people will take the time to read it and offer some advice.

I'm a 19 year old female currently in my second year of college. For the past 6 months, I have been dealing with debilitating symptoms. I am going to start from the very beginning.

Last week of my freshman year, (end of April 2018) I tested positive for Flu B. Ending my freshman year with the flu was the absolute worst timing. I was cramming for finals while also trying to be social. Being the ******* I am, 3 days after my diagnosis, I decided to go out drinking one night thinking I would be fine. I also consumed no water and very little food before this. I was fine drinking before I went home. I went home and smoked a little weed. (Side note, I smoked weed every single day before all of this started happening.) I went to bed with what felt like heartburn that night but figured it was just because the flu, the weed, or something benign. I went to bed with the thought I was just tired and sick since it was 4 AM and that I would be fine in the morning. Boy was I wrong. The whole thing escalated. It felt like there was an elephant sitting on my chest, heart beating out of control, dizzy, couldn't see straight. I've never felt so god awful in my whole life. I had my roommate drive me to urgent care where they gave me a chest x-ray.  They told me I was just dehydrated. (Made sense to me). Fast forward to 2 days later. It was the day I moved back home after the school year ended. I felt pretty much fine at this point compared to the other day. I had plans to hang out with all my friends that night. I smoked weed again thinking I'd be fine since a couple days had passed. I was wrong again. I immediately went to the bathroom and had severe diarrhea for 20 minutes and had the same symptoms I did the other day. I figured I was just dehydrated again but something in my gut was telling me something was wrong. I went to the ER that night where they just gave me an IV and some bloodwork which came back normal. The week after that was okay for the most part but then things started building up. I was dizzy all the time when standing, had horrible brain fog, palpitations, vision changes. I saw a total of 30 doctors over the summer to try and figure out what was wrong. Every single one of them told me it was anxiety. This made absolutely no sense to me because I had never once dealt with it in my life. Things got progressively worse as time went one. My GI tract was becoming affected. I also developed IBS and Gerd which I never dealt with before this all started happening. My sleep became severely impaired, I lost my appetite, and could barely leave the house. I work as a hostess during breaks where I stand for 6-7 hours without a break. I was always fine during this which was weird to me and doesn't make sense. I think I just pushed myself no matter how awful I felt since my job was the only thing I had going for me. I had many tests done including:
- 3 CBC's
- Lyme
- Thyroid
- Celiac
- Several EKG's
- Echo
- Vitamin deficiency
- Brain CT and MRI
- Chest X-Rays
- Eye exam
- Hearing test
- Pap Smear
- Urinalysis

all of these came back NORMAL. I even had a doctor tell me I was, "picture perfect healthy!" I felt completely defeated. As time went on my symptoms started adding up and got even worse. My symptoms included:
- Dizziness
- Vertigo
- Sensitivity to loud noises and heat
- God awful brain fog
- Constipation
- Nausea
- Headaches
- Palps
- Chest pain
- Extreme fatigue
- Blurry vision
- Pain sensitivity
- Gerd and IBS
- High heart rate upon sitting and standing

I was eventually prescribed an SSRI and started seeing a therapist because every doctor was sick of seeing me me. Last week before school, I finally had a TTT done after persuading my PCP. Upon my results, it said, "Meets criteria for pots." I was so happy to finally have an answer. Except it wasn't that easy. My cardiologist, neurologist, and PCP all told me I definitely didn't have pots. But then why would the test say that? My cardiologist said I had some form of dysautonomia and that I needed to re-condition myself and that I would be back to normal. I have been at school for about a month now. My fatigue and brain fog is absolutely debilitating. I can sleep for 7 hours or I can sleep up to 12 and I will still so tired to even get out of bed. I used to go out and drink 4-5 nights a week and smoke every night and I haven't had a drink or smoked since April. I can't even go to the grocery store without feeling completely defeated. I'm also extremely sensitive to pain now. I stubbed my toe a few weeks ago and fainted! Absolutely terrifying. I have broken bones and gotten tattoos and have had no issues. Now the slightest amount of pain makes me feel like I'm gonna pass out. I have also developed migraines. I would get a headache maybe once a year. Any help at all would be greatly appreciated. I'm wondering if it could be CFS. My doctor's at home wouldn't test for an autoimmune disease because I showed no symptoms. I'm lucky if I leave my dorm most days. I don't think I ever needed an SSRI but now I am scared to stop taking it because I don't know how my body will react. (I take 25mg of Zoloft) I know I am supposed to be doing light exercise but I can't even get out of bed most days. Even showering becomes a huge struggle. My HR gets up to the 150's. I would be very grateful for any advice or ideas of what is going on with me. Thank you!
2 Responses
Avatar universal
It sounds like what I have: hyperandrenergic syndrome. Did anyone do a tilt table test on you?  When they did it on me, it triggered tachycardia.  I had to go to Vanderbilt University Medical Centerfor a diagnosis.  It may be free, as they are the national center of excellence for disautonomia  supported by NIH.  There are good writeups by VUMC hyperandronergic syndrome.  Most doctors are clueless and useless.
Avatar universal
CK, So sorry you are going through this.  It is so hard being a young person trying to live your life dealing with something like this.  I have a dysautonomia diagnosis and can relate to most of your symptoms.  I  certainly agree with henry, that you need further evaluation by a specialist in autonomic dysfunction.  Being that you became ill right after your flu also, chronic fatigue syndrome maybe should be considered.  
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