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Hi, for the last year and a month I've been dealing with severe symptoms that mimic Vestibular Neuritis, Labrynthitis, or other veritgo like disorders. Let me explain my story
Around a year ago in late May I was laying down on my bed. I had no woken up to this illness, I was actually about to fall asleep when I felt sudden and vast change in all my senses (My first thought was stroke/heart attack). Of course I'm not familiar with that, because at the time I was only 20 (am now 21). I got up, everything started spinning, my vision spinning, my sense of touch, I'm not sure how to describe, just simply shifted, and I could barely stand. I started to have my first ever severe panic attack, because of course I had no clue what was going on, with no previous anxiety issues. I had rushed to the hospital. After injecting me IV fluids, and calming me down I was sent back home. Of course I still didn't feel okay but I listened to the ER doctors because they said I was perfectly healthy and it was simply an anxiety attack. Okay, cool. I was exhausted after that vertigo bout, so I immediately fell asleep when I got back home. The thing is, I woke up the next day feeling the same. From the moment I got up, I had no sense of balance. I was grasping from wall to wall trying to figure out what was going on. Everything was still spinning, I started getting heat flashes, and of course started getting anxious. My senses were failing me I thought. My vision was now severely blurred also, and I had lost all sense of concentration and time. I rushed back to the hospital, again, they tell me I'm perfectly healthy. But one doctor looked at my symptoms, and I do believe thought they mimicked so sort of brain issue, such as a tumor or something. They also ran some stress heart tests, which gave mixed results, because with this severe vertigo, how do you expect me to walk or run and not passout. My heat seemed fine in itself though. So they decided to give me an mri with contrast. The thing is, for whatever reason, they blamed it on a tooth filling, they couldn't see any of my inner ear or sinuses or really my face even, just my brain. So, they ruled out brain tumors I'm assuming, but didn't see anything else because it was simply a black void on the images.
Again, after a few days, they sent me home saying I'm perfectly healthy. At the time, I had never even thought of vertigo or balance disorders because I simply had never heard of them. For the next two weeks, I was completely bed ridden. I had no clue what was going on, vertigo attack followed up with panic attacks all throughout the day. The feelign was 24/7, it did not come in attacks. From wake up to sleep. My sinuses felt completely pressurized all over my face, I had aura fullness in my ears, and while my hearing was unchanged, I felt simply trapped in my head. It was like a trance. I could not do anything physical, and I could not focus on anything. That was the brunt of sickness, undeniably the worst part and I would never wish it upon anyone. Skip forward a few months, I had been to the hospital/primary multiple times to no avail. They had given me antibiotics instead of trying to diagnosis(Probably because I'm a young male and look healthy there's no reason to search further). I had a few bouts of pancreatitis caused by the antibiotics attacking my body, or maybe the vertigo and anxiety attacks simply destroyed my digestive system at the time. Back at the ER, they fast me for a few days and that was resolved. Now, I'm home again and I have lost 25 lbs in a month. I feel awful, still having this illness on top of it all 24/7 from wakeup to sleep. Some times worse sometimes better. It really fluctuated, and balance had not been resolved. I forgot to mention, after the first couple weeks my vision had gotten 100x better, but even to this day it is not full restored. Almost like tunnel vision in a way now. Focusing and concentrating is still a difficult task. For the next several months I have experienced severe headaches, I had not gotten headaches daily at any point in time in my life before this only when I had a cold(now resolved after using saline(salt water) flushes and spray for a period of time. The sinus pressure is gone on my face as well through that. I had gotten severe earaches for a couple months through the hard winter months as well, but after awhile those stopped as well. I can only think of this as recovery since it's improving and not getting worse, but I'm a far cry from feeling normal again. I regained some of my former strength and stamina, while I'm still very weak and frail I can at least walk or ride my back out in the outside air. I am not completely bed ridden anymore. My vertigo attacks have stopped (not sure why, maybe healed slowly over the course of time). I still feel different 24/7 I still have aura fullness, and my senses are still slightly off (Really hard to explain unless you have dealt with this) I still feel I'm unable to work, but I'm slowly recovering a little and little more over time. My anxiety was shortly solved after the vertigo attacks were, through a lot of mental fortitude and stress relieving and relaxing activities.
I have yet to be diagnosed though, my primary transferred in the middle of all of this, it takes forever to get appointments, the ent wanted 6 months of notes before she would even SEE me (Have yet to see any specialist regarding any of this) Because to everyone, I am perfectly "healthy" on paper. I've been tested for nearly every infectious disease out there including hep c and HIV. My blood work has been ran multiple times. I have had two MRI's, both again having my face appear as a black void but taken 6 months apart. Multiple CT scans, although I don't believe they were looking for a problem with my inner ear so I'm sure they looked over it. Multiple Xrays, nothing. Not one thing.
They I researched, and researched. I have a life to live. I had to postpone my trip to start college this fall to spring because I still had not fully recovered even after half a year. I try to make it a point to exercise everyday, even though I feel uneasy with my senses being distorted and the aura fullness. I also picked tinnitus at some point, around the time of the ear aches. It only lasts for up to 10 seconds, although I usually have small vertigo like symptoms while it goes on. I am getting better, I know I am. I am asking you this community, on what would you think would be the best way to get into the proper specialists to diagnose these sort of disorders. Or if anyone trained in the area could give me helpful ideas to improve, or give me an idea of what you think the problem is so I can bring it up when I finally get another primary doctor. I have free health insurance, in the case that I have not been able to work for over a year. I am recovering with time as I said, it's just extremely slow and I know it's not life threatening at this point, and I would like to make a full recovery within the next 6 months if all possible so I can attend my college with no worries.
Please, and thank you for your time.
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