Hello, Time to introduce myself. I’m a 41yo woman from Los Angeles.
My current symptoms came on a couple weeks after a mild 2-day bout with stomach flu in Jan 2018. I was at a restaurant for brunch and all of a sudden I felt extremely nauseated, cold sweats, dizzy and pulsing vision. Rushed home, laid down and symptoms subsided. Next day I woke up with severe nausea (no vomiting and have never vomited), diarrhea, vision problems (difficulty focusing, blurred vision, seems like objects are moving), and dizziness.
In the past 8 months I’ve lost 35 lbs from the constant nausea and am quite debilitated.
Currently I have:
the horrid nausea, dizziness, feeling like Things move when I look around, sometimes I need to hold on to someone when I walk bc I get the spins, Pulsing vision, difficulty focusing vision, feeling like I am in a dream, Foggy brain, difficulty reading, stores or places (like a library) w lots to look at make me feel awful, pressure behind my eyes, ear fullness, headaches (but not migrainous).
I can have some ok days but mostly very difficult to manage days.
I’ve had something similar occur twice before. Once at age 11 (1988) and again at 21 (1998). Since my biggest concern was the nausea I always went the gastroenterology route and Neither time were the doctors able to diagnose anything. At 11, after several months with no treatment or answers it slowly resolved on its own and I was symptom free until it came back 10 years later in 1998. I had to take a semester off college because I couldn’t function. After months of suffering and probably as a last resort my PCP threw out the term “IBS” and gave me Paxil which seemed to alleviate everything and again my symptoms subsided. I went off paxil after about a year and never thought about it again.
Fast forward 20 years and here I am again. This time, I cut straight to the chase and in Jan. went right on Paxil since it seemed to have helped in 98. I thought - maybe this is just all in my head. The Paxil did not go well. It made me agitated, made my dizziness so bad I couldn’t drive and made my nausea worse. After 1.5 months on Paxil I cross-titrated onto Prozac. Along with all the bad side effects from Paxil, after 2 weeks on Prozac I was having extreme anxiety and then suicidal thoughts which I had never had before. So I stopped that and decided psychotropic drugs are not the answer for whatever is going on with me. I should note, I had been given temazapam and Ativan to sleep and both were horrible for me.
I saw a functional medical doctor (like a naturopath but w a western medicine medical degree). She tested for a myriad of issues. Nothing conclusive but I went on a bunch of supplements and an elimination diet but that too made me worse. So I had to stop.
I was trying to avoid the Doctor rabbit hole route since it had been fruitless the last 2 times in my life but I now realize I DO have something. This isn’t normal and I need to get to the bottom of this.
I started w gastroenterology due to the weight loss and nausea and everything normal there.
I saw a neurologist who requested an mri and vrt assessment.
MRI is normal
VRT therapist suspects Vestibular Migraine
I saw an ENT and had an auditory test, impedance test and VENG. Found out yesterday those are All normal.
I also saw a neuro-opthamologist and all normal there.
Additionally, saw endocrinologist and standard hormones were normal.
From the ENT I saw yesterday I got a referral to Dr. Baloh at UCLA and will set up an appointment there. Most of my care is at USC and I have an appointment w a Neur-otologist there on 9/10. After much calling for a cancellation I was able to get an earlier appt w his Physician Assistat for next Monday. But not sure what to expect there since she’s just a PA.
I’m in the depths of this condition and still flailing without a diagnosis. Wondering how I’m going to make it each day.
Long story. Thank you for listening and if you have any similarities to my story I’d really love to hear. Before this struck me I was a very happy, healthy and active mother of 2 young boys with a great life and husband. With every ok day I get my hopes up only to be crushed by the awful days that ensue. This page has been helpful in providing guidance and support even as a lurker. Thank you.