Unknown Cause of Almost 2 Years of Symptoms - Please Help!
Hello everyone, my sister has been experiencing extreme symptoms the most extreme of which being constant 24/7 persistent dizziness, extreme head pressure, and extreme nausea. I apologize in advance for the length of this post.
Her symptoms started about two years ago, the day after getting new lenses in old glasses that were hard to see out of and the vision out of them looked like wearing goggles, as well as the changing of the covers of some outdoor cushions that had never been washed and likely had mold, pollen, dog hair, etc. and we suspect that she lived in a moldy apartment, but we don't know if any of this is related. Also we don't know if it's related, but she got sick a few times prior and never tested if the sickness was COVID, but it could have been. She also got into a very very small car accident about a month or so before her symptoms started but she was not hurt at all. Before her symptoms started she had a history of IBS, mold levels, anxiety/fears/phobias, worsening motion sickness, Epstein Barr markers from childhood, extreme stress, and going off of her anxiety medication earlier that year. She woke up one day experiencing vertigo which eventually turned into persistent boat-like, floaty dizziness that has been daily since then.
With her dizziness she also has experienced nausea every day and more recently extreme head pressure. With a functional doctor, she received very very minor relief over the course of four months but then she got COVID in early 2025 which caused everything to worsen. She began to have symptoms that mirrored gastritis including extreme fullness, intolerance to some foods, a soft-choking feeling in her throat, and the ability to only a very limited diet. Since then, she also has had her other symptoms worsen as she now cannot watch TV, look at her phone, read anything, look at photos, prepare any of her own food or drinks, sit on anything other than a hard chair, and she has extreme discomfort when she removes her heating pad. Also, she lost her period during this time frame for about five months and when it came back it brought with it bad pms and periods that made all of her symptoms flare extremely. It’s also worth noting that with these symptoms, her movement is limited and does spike when she moves her head and she cannot lie flat, lean back, tilt her head, etc. and nothing has made her symptoms go away, she has experienced them every single day with little to no improvement for approaching two years.
In addition, she sat outside earlier this year for 3 minutes and since then her symptoms have increased immensely since then. She came inside with a feeling like she had just come off a fair ride and every symptom increased drastically, including head pressure which is now almost equivalent to the severity of her nausea and her dizziness. She also has had to limit her life even more due to anything raising her symptoms including talking, listening, looking at anything, or walking further than the bathroom.
She has seen a slew of doctors prescribing different things and giving loose diagnoses but never coming to a real conclusion that felt right to them or us. Among these include neurologists, ENTs, neurothomologists, eye doctors, emergency room doctors, PCPs, functional doctors, gut health specialists, spike protein researchers, audiology specialists, nervous system specialists, acupuncturists, cardiologists, etc. No one has been able to say for sure what this is and give her a plan that is effective and/or treats her as a whole rather than just one specific symptom. By these doctors she's been diagnosed with PPD, vestibular migraines, potential BVD, mold toxicity, high histamine levels, potential POTS, long-covid, post-covid syndrome, crystal displacement
Currently, she is taking Pepcid, Claritin, DGL, Quercetin, Zinc-Carnosine, and she takes tummy drops to help with the nausea (they are not very effective), and very occasional Tylenol for head pressure or period related symptoms. Within the past few weeks, she went on Cromolyn and is titrating up by half ampules (with the goal of being on 4 ampules daily) and she tolerated the first two halves somewhat well but the third half has been giving her issues as it raised her nausea extremely and caused her stomach severe upsetness. She went back down and started taking it with food which helped slightly so she tried to go back up to three halves but once again experienced the same nausea, just not as long as the first time, so she is back down to two.
As you can see, this is a lot and puts her, myself, and our family at a loss for what to do and how best to help her. If anyone has any advice or has gone through something similar, or even has advice on her meds please let me know.
Posting this a few places, sorry if you see it more than once!