- CASE FILE
2 years and counting of undiagnosed chronic dizziness, weakness, brain fog, episodes of temporary paralysis, fuzzy vision, and ringing ears.
ABOUT THIS CASE FILE
One night in March of 2017, I was getting ready for bed and I passed out. It was nothing like the previous times
I have passed out in my life, there was no trigger and no warning. Just one second I was perfectly fine and the next second I was coming to, collapsed by my bed. I did not hit my head on the way down. When I woke up, I was dizzy and I have been ever since. I was hospitalized twice and discharged both times because every test they could think to run was coming back negative and "your life is not in immediate danger and the hospital is full, we need your bed." Two years later I still don't have a clear answer of what is wrong with me. I can't drive, I had to quit my job and withdraw from college. All I have are bits and pieces of information and random diagnoses we have found along the way. I had a brain MRI where they found a Type 1 Chiari Malformation (6mm,) no tethered spinal cord, most likely not what is causing my symptoms. At the time I was taking a very high dose of Hydrochlorothiazide to prevent kidney stones which caused me to develop extreme tachycardia where every shift in position caused my blood pressure drop drastically and my heart rate to skyrocket. Switching medications corrected that for the most part. I still struggle with significant positional changes like sitting up or standing up. Since my activity is so limited now, I had a physical therapy evaluation where they discovered I had a vestibular hypofunction likely caused by a virus in my inner ear. Everyone was sure that this combined with the medication had caused my symptoms. But the hypofunction was corrected with PT and my symptoms remain. I have episodes of temporary paralysis where I have no control over any of the muscles in my body, I just go completely limp, my brain works 10 times slower than usual, and I have a hard time speaking and keeping my eyes open. It usually takes about an hour before I start to slowly regain control. That is the symptom that baffles most doctors, and the most frightening one. It is the main reason I can't get behind the wheel of a car or commit to responsibilities like work or school. An EEG said it isn't seizures, but I wasn't having an episode at the time of the test. I have not noticed a pattern or trigger, it just happens randomly and quickly. I have occasional fuzzy vision so I was seen by a top ophthalmologist who saw nothing wrong. It was later suggested I may have Convergence Insufficiency which I have not yet had checked out but it was not mentioned by the eye specialist. I have seen 2 ENT specialists, one dismissed it as chronic migraine and sent me away without hearing my story, and the other did a thorough exam specialized to diagnose dizziness and came back with nothing. I have seen 2 neurologists and been dismissed with "I have no idea how to help you" and "you need psychotherapy because you are making all this up." I have occasional ringing in my ears. Loud or high pitched noises can sometimes make me feel worse, as well as flashing lights or things moving quickly past my face. I sometimes have to use a wheelchair to get around because I can't trust that my body won't give up on me at any given time with no warning. I also suffer with extreme brain fog. I'm constantly forgetting what I'm doing or taking an extended amount of time for my brain to process something that has been said to me.
Tests/Scans that have given us nothing:
24 hour heart monitor
Episodic heart monitor
Brain and spine MRI
Other conditions I have/have had that are probably unrelated but I will list them in case:
Urinary Stone Disease
Vocal Cord Dysfunction
My next course of action is to get evaluated and tested for Lyme disease. It's going on 28 months since my life has been put on hold. I am 21 years old, I would love to get this figured out and get back into school and life.