Well, hi! My name is Courtney, I am 26 years old living in Texas and just about 6 months into this crazy journey! Ive been “tentatively” diagnosed with VM by my ENT, and waiting on my appointment with Dr. Beh in Dallas, TX in October to confirm. I guess I can start with how everything happened, if this is long I am SO sorry. I just have a lot to say
It all started early December 2019, right after my 26th birthday. I went and got dinner one night and just felt so “off”. Lightheaded, pressure in head, derealization. I thought it was just because I was tired and overworked and continued to trudge through the day. By the time the day was over I had a sore throat and a migraine, and by the next day I was super sick. Some kind of virus unknown, not flu, not strep, couldn’t figure out what. I spent a week feeling this way and did a pretty strong course of antibiotics and steroids and started to feel a bit better. Five days after the onset of symptoms was when my life changed as I knew it. I was hanging out in bed and started having the worst anxiety ever. I took .25mg Ativan and tried to rest. About an hour or two later I still couldn’t shake the feeling. I headed to the bathroom and by the time I made it I had to physically hold on to my bathroom vanity as to not float through the ceiling. I thought to myself “This antivan is laced… the pharm messed up my prescription”. I thought I had overdosed. I genuinely though I was going to die. The dizziness didn’t stop. Ever.
The next day I went to work and had another attack, and this time I thought I was suffering from withdrawal to my steroid. I was so dizzy and the derealization was so intense I felt like I was floating… During the next week my symptoms intensified and changed rapidly. I went to my PCP who told me it was migraine (I lol at myself for being so mad at him for saying that now), I went to the hospital twice with complaints of head pressure so bad I couldn’t even stand wearing my glasses, I felt like my head would explode out of my ears, serious sound sensitivity, light sensitivity, nausea, dizziness, lightheadedness, didn’t feel “real”, felt like I was floating, swaying, having surges of adrenaline in my sleep followed by anxiety attacks, fatigue, ringing in ears, stiff neck, neck pain, floaters in my vision, static vision, blurry vision, brain fog, couldn’t focus my eyes, stomach pain, and probably more I can’t remember. My first visit I was told I had a sinus infection (lol) and the other time they kept me for 3 days and tested me for meningitis. I was sent home without an answer. I cried and cried and cried.
The next few months from December to late February were so bad I only left my house for doctors appointments. I had all the same symptoms as listen above, with some new ones as well, including terrible migraines. I saw my PCP 2 more times, he basically told me I was crazy and to go back to work. I saw an ophthalmologist and a neuro-ophthalmologist. I saw a neurologist who did an MRI and CT scan and told me I just had migraines and put me on Depakote, which did help the pain component. I saw my ENT a couple times and he threw out the diagnosis of labyrinthitis and Menieres, both of which he revoked. Saw an audiologist and had a VNG testing, spinny chair, had my hearing tested, the works. My ENT said my results were “beautiful” (even though I snooped and my results showed slight abnormalities in my right eye [if I read it right lol]) He referred me to UT Southwestern, and now I wait to see Dr. Beh
Currently, Im still not working. I went back a total of one day and couldn’t handle it. I was serving at a restaurant before this, and there are just too many lights, sounds, smells, and visual stimulation that I just can’t handle. Some days are better than others, but most days I still only feel maybe 50/60% Im stilhaving constant, 24/7 symptoms with attacks often varying in intensity. I’m not on any medication or supplements at the moment. I am terrified to take anything, even magnesium, for fear it will make things worse. My symptoms have changed and gotten worse/better. I will list those at the bottom of my post! I am so happy to have found such an awesome community on instagram that I can talk to. If it wasn’t for them (and finding this forum) I may not even be here today to type this. Having found others like myself has made me hopeful of my future. If you’ve read this long, well you deserve a white chocolate chip cookie! No, but honestly, thank you so much for taking the time to read this if you have, and I look forward to speaking with each and every one of you!
Symptoms: Swaying, rocking, feels like I am walking on foam, fatigue, legs feel heavy, sleepy eyes, pressure in my head/face/ears/nose, occasional ear pain, ringing in ears, whooshing in left ear, blurry vision, visual snow, neck pain, stiffness in neck, stiffness in head, sore shoulders, sore upper back, internal tremors that come and go with attacks, nausea, light sensitivity, sound sensitivity, occasional odor sensitivity, clumsiness (I say I have the “dropsies” as I drop a lot now), dry mouth especially before attacks, dry eyes especially before attacks, teeth and face feel like they vibrate, trouble focusing eyes, brain fog, word hunger, feeling as if I might faint, derealization as if I dont even exist/life is a dream, anxiety, trouble in stores with fluorescent lights, mental fatigue, imbalance, some joint pain (I have a habit of locking my knees up when I sway), headache/migraine, ataxia, pins and needles… did I miss anything?
Im so excited to connect with you guys!