Severe Symptoms, No Diagnosis

[tooyoungtobethistired2]

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? 

[Jwarrior77]

Hey @tooyoungtobethistired2 I understand a lot of what you are going through. I'm also on the younger side here so you're not alone. I started getting really bad symptoms back in early May at the end of my senior year of highschool. I was under a lot of stress, not getting enough sleep, and got hit with a virus which basically cascaded me into a nightmare of horrible symptoms. I almost didn't graduate because I couldn't get any work done, was getting extreme anxiety and panic constantly, and just felt awful and didn't know why. To make a long story short I figured out that my heart rate would rise 30 beats + when I would stand up. My cardiologist did a TTT which showed the same thing but he basically shut me down for not having POTS as I didn't fit specific criteria and claimed that I just have anxiety. I also don't pass out and don't feel faint when I stand up. I know your doctors doesn't think you have POTS (and you might not idk) but a really easy way to figure out is to get a cheap pulse oximeter online and test it out for yourself when laying down and then standing up. A lot of times we get nervous at the doctors and that can skew results.

 

Also you're not alone with the depersonalization/derealization. I also developed this during the summer and it was really bad. I basically didn't feel connected with reality or my body. It really does feel like "everything is far away and under water" as you put it. I thankfully don't deal with that now. There's a bunch of videos online on how to deal with it/get rid of it. From what I understand it's basically your brain freaking out from everything going on and the high amount of stress that it basically just "shuts off temporarily" if that makes sense. You should also check for vitamin defiencies that can contribute to it. Trying to relax and not panic really helps it get better. I know it's wayyyyy easier said than done but you can get rid of it trust me. 

 

Myself and many other people on this forum experience the panic and shaking episodes and I know how scary it is. It's most likely just high amounts of adrenaline being dumped into your system causing that. I also worried that I may have some serious life threatening illness causing all of this and really thought I was going to die on numerous occasions but I'm still here. A lot of what your feeling right now is that your sympathetic nervous system is abnormally dominating putting you into constant fight or flight. The key is to increase the parasympathetic which calms all of that down. There are also a couple of people who have Autoimmune Autonomic ganglionapathy on here as well so you could probably reach out to them. Sorry this post is so long and kind of all over the place. I have a lot more to say but feel free to ask me any questions. I just want to provide some hope and support. You aren't alone.

[Guest ScottS]

I too have had poor man's tilt table tests and not felt faint while experiencing only a little in the way of either tachycardia or off blood pressure responses. Which is curious as I passed out (hard) half the way through both of my full blown TTTs. Both times, approximately 20 minutes in, my heart rate spiked to the low 150s. I then passed out and within half a minute or so my HR dropped back down to the high 40s, low 50s. So I wouldn't put too much faith into what either of those two doctors who had you tested via the poor man's method said. 

Stephen Hawking had amyotrophic lateral sclerosis. What you're describing - your symptoms - doesn't match up at all with that disease.

My best advice is that you continue researching. Keeping a daily (sometimes hourly) diary noting both how you are feeling and what you are experiencing, and how those feelings (and experiences) have changed (from earlier in the day) can help too. If gastroparesis is still an issue, be sure to note not only what you have eaten but the amounts. Take note of patterns as (at least in my experience) gastro events can be cyclical. Try to stay hydrated. When nauseated or feeling that crap gastro "having the life squeezed out of you" sensation - what, for me, feels like a 500 pound Sumo wrestler sitting on my gut while pressing the bulk of his weight against my diaphragm and then throwing the occasional punch at my heart - a cup of warm salty broth can help. Take care to not become de-conditioned. Stay active while respecting obvious limits. Exercise as is appropriate for you if and when you can.

Don't give up or give in. Things will get better.