Vestibular Neuritis or something more serious?
Posted , 9 users are following.
I'm new here and basically at a point where I'm just trying to figure out what I should do and looking for advice.
Back in October (3 months ago at this point), I had a sudden onset of severe dizziness and was basically unable to function. After about a day and a half with no relief, I went to the ER. I had a CT scan and bloodwork that came back normal. The doctor there was basically at a loss and said he could admit me for an MRI or I could go and make a follow-up appointment with an ENT. He said that he was leaning towards the ENT appointment due to my age (30) primarily, along with the normal bloodwork and CT scan. So I left and went to the ENT.
ENT diagnosed me with vestibular neuritis and prescribed a steroid. Within about a week and a half, the dizziness went away almost completely. I was left with a foggy feeling in my head and what felt like slow vision, all on my left side, but no dizziness. The foggy feelings and vision issues also seemed to gradually be getting better.
Fast forward to December, and all of a sudden, it seems like everything has gotten worse again. What used to feel just like a foggy feeling in my head now feels like a pressure in my head on the left side. The exact location varies from day to day, but basically the left side of my head, about one to two inches away from my ear, occasionally towards the top of my head (about an inch or two from the top of my ear) and occasionally towards the bottom of my head (closer to my neck, still on the left side though). My vision also still feels 'slow' like when I look around, my left eye has trouble keeping up.
I made a follow up appointment with my ENT, who did some ear drum tests (came back normal) and said that he essentially did not know what was causing this, but that we could try a few treatments over the next few months to see if anything worked. I asked if I should be concerned about a brain issue or tumor and he said that was a possibility but that he did not want to jump there yet and would not write a referral to a neurologist when I asked if I could do that.
At this point I'm just wondering what to do. The pressure feeling in my head has been relatively constant for about a month now at least, and while it does get better and worse throughout the day, it always feels like it's there, at least a bit. I'm wondering if I should push harder to get a referral for a neurologist. Has anyone with VN or a similar vestibular issue experienced this? It is not quite debilitating, I can go to work and while it is difficult to focus to a degree, I can also do my job to a functioning degree. But, at this point I'm wondering if I have a tumor of some kind or a brain issue that was not accurately diagnosed because the feeling just doesn't seem to go away. Any advice or similar experience would be greatly appreciated. I'd try just about anything at this point.
0 likes, 11 replies
brian40174 caitlinator
Posted
Hi there, sounds like your symptoms are vestibular in origin and not consistent with a brain tumor at all. However if you're worried about a brain lesion of some kind you really need to arrange a head scan to put your mind at rest. In fact I'm really surprised that your ENT doctor hasn't done this already as the usual procedure in here the UK is to rule out life-threatening conditions before looking at more subtle explanations.
ry1990s caitlinator
Posted
Sounds not to disimilar to me. How would you describe your dizziness? Is your balance off, or do you just feel off?
I have had 'probable vestibular neuritis' since August 2018. Had pressure problems, hearing was fluctuating, before i felt extremely lightheaded and ill. I have had this constant vague dizziness/mild vision/mild hearing issues for almost 6 months now. I also have heaviness in my ear/left side of my head which comes and goes. I can still function ok, i can run etc and work, but I just don't feel right.
I saw an ENT in October, then a neuro-otologist - who sent me for a brain scan MRI. It came back normal.
I am seeing a neurologist who specialises in vestibular disorders next week.
I don't think you have a tumour, it would be more obvious, but do get it checked out.
Betty97 caitlinator
Posted
HI Caitlinator
I too have the eye thing, exactly how you describe it, mine started while pregnant with my daughter 22 years ago, I have mentioned it my GP over the years and have mentioned it when having routine eyesight tests, but it seems to be unimportant, having said that it's really annoying when moving my head to the side, looking to the side without moving my head makes me feel dizzy, it's never got any better or worse, just stuck with it.
Waffalobill caitlinator
Posted
need to see a neurotologist not neurologist. he will want a mri. can get your primary doc to order one if ent wont. menieres can give those symptoms. the build up of fluid can burst the endolymphatic sac. location is about the same place your talking about.
pattino caitlinator
Posted
It might seem unrelated but you should check for sinus infection . Some vertigo are triggered from that.
Alcohol and caffeine can aggravate it too .
Guest caitlinator
Posted
Hi, I was recently diagnosed with vestibular migraine (a.k.a. migraine associated vertigo). I had daily head pressure, neck pain, migraines, fatigue, disequilibrium, and felt like my eyes were not catching up. I had 2 MRI's, CT scan. Also, caloric ear testing, rotary chair testing and hearing test to rule out vestibular neuritis. If I had inner ear nerve damage...I would have failed the tests.
The name vestibular migraine is deceiving....You do not have to suffer chronic migraines...your head pressure may be silent migraine.
Another post mentioned an neuro otologist. That is who finally diagnosed me after I suffered for over a year and a half. They are neurologists that specialize in vestibular disorders. Most can be found in balance, eye, ear hospitals.
Pippi_cg Guest
Posted
hello, how did the neurotologist help you?
Guest Pippi_cg
Posted
Hi, nortriptyline, Vitamin B2, coq10, magnesium, diet modification.
hmoosey caitlinator
Posted
hi caitlinator
i too had been diagnosed with VN- i had been to the hospital 2x and admitted. blood work, MRI, catscan all came back normal. first diagnosis was BPPV-second diagnosis was vestibular nueritis. prescribed steroids like you. i never got better. had seen an ENT, had seen a nuerologist. terrible brain fog, confusion, dizziness. anyway. my advice to you is this- you need to see an otolaryngologist. this type of doctor specializes in diagnosing and properly treating this disorder. my ENT- told me that she didnt know why i wasnt getting better. she made me this appt with the otolaryngologist. you should be getting caloric testing too. i now have the right diagnosis VESTIBULAR MIGRAINES. i am on medication that has given me my life back. norotryptiline. you do not need the pain of a headache to have this disorder. it can and will come out of nowhere. look up the symptoms on webmd - i was shocked that i had every single one of them, yet these specialists had no idea what was wrong with me. its right there on the web page. look in your area for a dizzy clinic. a lot of major cities have them and they can do the proper testing to diagnose you. i went thru 3 months of hell. i have been on the medication since august and its a slow increase to wipe out all the symptoms. but i knew when i started it i was finally going to get better. it started to work immediately. also, i did physical therapy for months. look for a PT that specializes in vestibular pt.
Pippi_cg hmoosey
Posted
hello what did they do to treat your vestibular migranines?
hmoosey Pippi_cg
Posted
hi pippi
first they ruled out other vestibular issues with special testing at the eye and ear hospital. i was prescribed norotriptyline which is an anti depressant used to treat vestibular migraines. i had an immediate positive reaction to this. my doctor is slowly increasing the meds until every symptom is gone. i am also on a beta blocker too. the other 2 diagnoses were garbage, seriously delayed getting better because i had been treated by doctors who knew nothing about vestibular issues. i was also in PT for months.