During my Freshman year of college, (my symptoms developed in April) I developed some really bad nausea. It never subsided & I was diagnosed with gastroparesis, but after seeing a specialist at Cleveland Clinic he believed it wasn't (as I could retain food without vomiting) and that there was an underlying cause.
The nausea finally went away when I stopped taking my birth control medication. I felt like an idiot without seeing it sooner.
I went back to college this year, but had to stop attending like three months ago. It absolutely broke my heart bc I finally felt like I had some semblance of a life (after being diagnosed with Fibromyalgia when I was a kid & basically never being able to experience anything a normal teenager does) and that all my hard work and years of depression had finally paid off.
I had to stop attending bc I was abruptly hit by "panic attacks" that would come upon me hourly. I had never experienced a panic attack before (not an anxious person before these attacks) and Valium did nothing to stop these panic attacks. When the panic attacks began, I started having palpitations all over my body. Three doctors suggested it was POTS so I was tested for that using the poor man's tilt table. The doctor that tested me told me not to bother with the official test as my numbers (blood pressure and heart rate) didn't change in the slightest. I've never fainted or felt lightheaded & never felt any discomfort changing positions. I had a second poor man's test for POTS with another doctor who also told me I shouldn't pursue POTS as a diagnosis.
After a week of being home, I started feeling these "slippy" feelings, like I was sinking into my body. The best way to describe these feelings is auras that people get before seizures. I think it's worth mentioning that after my first episode of the "slippy" feeling (idk how else to word it) I developed chronic depersonalization/derealization. It has not gone away in two months. It feels like everything is far away and underwater.
I then went to go see an Infectious Disease specialist to pursue Lyme, but ended up having my first tachycardia episode in his office. I got this weird feeling (like almost a clicking on either side of my temple) that set it off. I was so scared, I was sure I was having a seizure from some weird infectious disease. I was hospitalized. My heart rate jumped up to 200, would go down slightly, and then go back up again. After they tried 3 different anti anxiety meds, (and lectured me about seeing a therapist for my "anxiety") they finally gave me a beta blocker & my heart rate went back to normal.
During these episodes (after the clicking feeling on the side of my head) my legs shake like crazy and my teeth chatter. I get them in waves at night. Before I thought it was just anxiety and that was what anxiety disorders were like - but if anxiety meds don't do anything, I don't know what to think of these episodes.
I've had all kinds of blood work imaginable to test for literally everything - which all came back normal. My component C4 is extremely high & my autoimmune panels keep going from negative to positive. I've had an MRI which came back completely normal, CTs and XRays of everything. I've seen so many specialists.
The Infectious Disease specialist as well as the heart doctor I saw thinks that I have something called Autoimmune Autonomic Ganglionopathy as my brother & father both experienced tachycardia episodes and severe illness when they were sick. For both of them, it just simultaneously went away.
I read that AAG is in the same type of family as POTS & I was hoping for some guidance & if anyone has experienced the same symptoms? I'm so worried I have what Stephen Hawking has or something other neurodegenterative disease. I'm terrified all the time, ever since the tachycardia episode I get these episodes where my entire body spasms & my teeth chatter & it feels like I'm slipping into my body.
I'm just so depressed and scared. It feels like I'm outside of my body & I want to go back into it again. I just can't handle this. I can't do it chronically. I mean, I don't even have a diagnosis yet & I've been sick for 9 months. With the beta blocker, my heart rate is fine & my blood pressure is always fine too. Anti-anxiety meds do little to nothing, my chest is KILLING me, and I get these type of adrenaline surges (doctors have finally admitted what I'm going through is not anxiety, I loved getting lectured for 8 months) and muscle spasms, and I just want it go back to normal.
I hate the depersonalization/derealization symptom the most. I think I could get through this if everything could seem real instead of this weird/fake dream.
I honestly can't do this anymore. I'm scared of dying 24/7. I'm constantly outside of my body 24/7. I don't think I can ever be on the same wavelength of my other teenage friends again.
I cry all the time bc I can barely handle being in the car or anywhere before I get these episodes.
Can anyone out there give me some guidance?
