My apologies for the long post, but I’m looking for anyone with any insight, and maybe someone out there is struggling like me and looking for answers.
For starters I’m a 28 year old healthy male. I have no history of medical problems. No migraines, no frequent headaches, just a normal generally healthy guy.
In July 2019 I jolted awake because I was late for an appointment. I rose from a laying position to straight up and began walking. As soon as I quickly rose to my feet I was extremely dizzy and off balance stumbling around to get to the bathroom. I never had any nausea/vomiting from this. I drove to my appointment dizzy and off balance, after my appointment I returned home and laid on the couch.
I remained on the couch for several days, even in a laying position if my eyes were open I felt dizzy and off balance. For these several days I didn’t do anything but lay there and wondered if I was ever going to get better. After a couple days one night I decided I should go to the ER and make sure everything was okay, and try to get an answer to what the hell was happening to me.
The ER doctor told me everything physically with me was fine, and that I was probably suffering from a BPPV episode from my rapid movement from laying to standing. OK. She told me if the symptoms didn’t dissipate after 2-3 days to see my PCP. Fast forward 2-3 days I was able to get up and move around, however the dizziness and feeling of being off balance persisted. My PCP scheduled me for a same day CT scan, but he agreed with the diagnosis of the ER doctor that it was probably BPPV. I went for my CT scan that day and got the results later that afternoon. All clear. I returned to my PCP the next day and he told me that I should give it another few days, and come back. Few days went by, symptoms persisted, and at that point he told me I should go to physical therapy for vestibular therapy, and that after a couple visits and having a them perform a few maneuvers I should be all clear.
The next week I went to physical therapy. The therapist performed multiple methods of the Epley maneuver, along with different vestibular exercises. This continued for a month. By this time I had started to drive again, and some days were worse than others in terms of dizziness and feeling off balance, however the symptoms were still noticeably there. As I said this went on for a month with no real significant improvement. Back to the PCP.
The PCP sent me to a local ENT doctor. By this time it’s October 2019. The ENT doctor had me complete an audiogram where I had absolutely no hearing loss, I even received a comment from the audiologist that my hearing was extremely impressive for someone my age. I should also mention by this time I had started to develop other symptoms, occasional tinnitus, and fullness in my ears. The ENT doctor scheduled me for an MRI, I left his office with two possible diagnosis. Either it was Menieres Disease, or Vestibular Neuritis. He told me to go on a low salt diet (around 1200mg sodium per day), and set me an appointment shortly after my MRI for a follow up.
With the MRI results in, I had my follow up with the ENT doctor. The MRI showed possible increase in CSF along my ocular nerve. They told me this could very well be the cause of all my problems, and that I should see a neuro-opthamologist. OK. Scheduled an appointment with a Neuro-opthamologist.
Neuro-opthamologist says that the possible increase in CSF on my ocular nerve was my normal, and had nothing to do with what I was experiencing. He told me he believed I was suffering from Vestibular Migraine, and he prescribed me 10mg amitriptyline daily as a prophylactic treatment to stop them. This was the end of November. I started taking the medication.
Throughout all of this I had been waiting for an appointment with the top vestibular doctor in my area, possibly the country. He practices at Mass Eye and Ear, Harvard professors, started the vestibular center at MEEI, you get the point. He tells me I 100% do not have Menieres disease, and that I should get that off the possible diagnosis list completely. His diagnosis was either I’m recovering from vestibular neuritis, vestibular migraine, or PPPD. He told me I should do research on these things, and figure out which category I best fit under.
So here it is Feb 1st 2020 and I’m still suffering with symptoms. I’m back to a fairly normal life, I’m not able to do everything that I used to. I have to take it easy, and try not to stress my vestibular system because i’ll get even more dizzy and off balance. I’m an active person, so being sidelined with these symptoms is starting to take its toll. I find that I can have 2 weeks of feeling OKAY the symptoms are there but not very noticeable. Then I can have a week or more where the symptoms are pretty prevalent and I’m forced to keep going as much as I can.
So if anyone out there has any idea, or has suffered from something similar to what I have your input would be incredibly helpful. Any success stories or recovery from any of these possible diagnosis I have, anything at all.