It’s pretty clear to me that many here are suffering symptoms similar to mine and I already feel a comraderie from reading many comments going back many years. I had a very healthy life (notice I didn’t say lifestyle), and never went to doctors for much of anything. Indeed, I struggled more with my teeth than anything else and when I first started feeling a little off balance, in 2013, I attributed it to infections that led to root canals and implants and it went away soon thereafter. When the first public incidence of mild vertigo happened a year later I still didn’t consider it a big deal and again it mostly went away after a few months. Any dizziness I continued to feel was mild and I attributed it to allergies because Claritin always seemed to control the symptom. When my eustachean tubes started acting up in 2015, accompanied by tinnitus, I attributed it to TMJ and after some upper-cervicular chiro things again seemed to clear up. I was symptom free for over a year when, upon returning from a trip to Spain in December 21017, the tinnitus came back along with the clogged ears. And over the past 5 months or so I have had 7 or 8 attacks of acute disequilibrium while most of the rest of my days have been plagued with less severe but persistent off balance feelings. I have had a few good periods of 3 or 4 days that seemed relatively symptom free but for the most part things have been decidedly off and have been totally unnerved by this. One of the attacks occured when I was in Publix and I had to drop my stuff, stagger to my car and slowly drive home (very close by). Another happened when I was out for my evening walk, suddenly I felt the wonkiness come on, out of nowhere, and I had a tilted 20 minute walk back to my home. The dizziness I felt in the first several years did include some nausea and vomiting but I learned that if I keep my head straight and dont turn my neck I can avoid it even when the verrtigo is most severe so I’m not puking anymore (yay). And I can’t even say that things are “spinning” because, again, if I keep my head straight and eyes fixed there is no visual vertigo. I can feel the imbalance and if I walk I am all out of kilter but no nausea and no “spinning.” I don’t think this is BPPV because it only happened once that I woke up dizzy and lying down pretty much alleviates the problem (sometimes within minutes sometimes within hours) though I always feel out of it for the next several days after these acute episodes. I self diagnosed as ether MAV or MD. Have ocular migraines with visual auras but no headache and phonophobia too. Saw an ENT, had a MRI, no acoustic neuroma just inflammation of my paranasal sinuses. Self medicated with meclizine and (very low doses (>,25) of xanax (and occasionally microdoses of aspiring in case of migraine b ut not too much for fear of aggravating my tinnitus). I feel the meclizine and xanax really really helped. Tinnitus comes and goes and though a bilateral hiss is evident there is a prominence in my left ear when it’s really ringing. I have hearing loss, both high and low freq, in left ear and high freq loss in my right ear too. Don’t know how to proceed. The ENT I saw is not a likeable guy and I think I’ll go forward with my primary care guy, a D.O. who I like very much. Haven’t done any balance teating. Wonder how helpful it all is since so many of the treatments are the same for MD and MAV, Have started a food and symptom diary. All I know is that for this to hit me now, at 61 after a life of no big health problems sucks big time and psychologically it has taken me down I think at this point maybe I should just go for symptom relief instead of accurate diagnosis. Having read the frustrations of so many here who can no seem to get an accurate or definitive diagnosis makes me not want to go through all the grief if only to discover that the doctors remain stumped. I had hoped to travel a lot and now I’m hesitant just to leave my house, to drive anywhere, etc… sorry this has turned into a self pitying tsouris. But any feedback is most welcome! Thanks for listening!
You need to see a neuro-otologist. Not to be confused with Neurologist. Neuro-otologist are dizzy doctors who specialize in balance disorders.
You can also opt for some testing like VNG and VEMP under the guidance of the neuro-otologist. If it turns out to be VM then there are myriad of migraine drugs which you can start trialing. People start feeling much better once they land the right drug.
In the meantime keep moving. Get a cane if you need one but keep moving. It helps recovery.
Don’t lose hope, i think you made it to the right place. One where people can help and comfort.
Thanks GB for your kind and considerate response! I’m hoping that my PC doctor will point me toward a neuro-otologist and didn’t really mean to imply that I have given up entirely on diagnosing. Indeed, I’ve just begun and would probably continue w/ the ENT I saw had he been more personable and interested (he didn’t even scope my nose, just said he thought it was a neuroma and ordered an MRI… spent about 10 minutes with me total and seemed more intersted in how much money I didn’t make as a professional singer - boy was that off putting). Part of my concern is the very high deductible ($7000) I have on my very meager insurance and don’t want to spend all that with no concrete results. And trying to figure out what’s triggering all this (the weather is a big factor) is frustrating too… paying attention to things that I never had to think about before, yikes! And I really don’t understand how this severe phase, worse than before, could just hit me out of the blue after 15 months of no symptoms whatsoever. But I will take your advice gratefully, keep moving and keep my chin up. 61 is old enough, I don’t want to make it seem older by giving up too soon. Boy this is a great site to have found!
Out of the clear blue sky is a pretty common thing here. Vignesh is right, a neuro-otologist is worth the visit and skips many of the intermediate steps most us go through.
@pugg, where are you located? You mentioned Publix, which makes me think you’re somewhere in the Southeastern US. The reason I ask is because I’m in Florida and I have a few names of neuro-otologists that are in Florida.
Hey Manatee, you are right. I am in St. Petersburg FL and would appreciate any recommendations you are willing to offer! Thanks so much!
I wondered!! Anna @Manatee is so close to you!
I went to Eckerd College! Though now I live near Seattle. Emily
OMG Emily… I graduated from Eckerd in '78… my dad was founding faculty there (FPC!) and if you ever studied Spanish it’s likely he taught you. Maybe we even know each other, huh? I’m Chris
and btw - my new PC doc is an Eckerd Grad too, John DeCosmo. I like him a lot… he ordered blood labs to check out any non-vestibular reasons for my malaise and I’ll be seeing him again in 2 weeks. He also prescribed CBD oil which, honestly, seems to be helping. I am sleeping better and my anxiety is way down.
Having read many many posts here I know that my predicament is so much less dire than many who have suffered far worse for a lot longer. I am amazed by the resilience and spirit of so many who just keep moving forward. I was very lucky all my life and really shouldn’t be complaining but as you all know, this vertigo thing is very unsettling. I know I’ll manage better with all the help available in this forum.
You will, because we’re here for you!
I graduated in 1995. It is a great school! I was out driving today and saw a Clemson sticker on a van. That’s where I did my graduate work. A mention to each of my alma maters within an hour of each other this far away. Cool.
PS I did take Spanish at Eckerd.
It’s a small world! My dad taught his final year at Eckerd in 1995 (though he was already oficially retired) … and… he grew up in Spartanburg SC… so most of my cousins graduated from Clemson, ha! Serendipitous indeed!
That’s just awesome!!
@pugg, I’m in Sarasota! Just down the road!
This forum software has Private Message capability. I’ll send you a private message (probably tomorrow morning) with the doctor names. I’ve got to dig them up and I also remember the name of one in Tampa and I’ll look him up, too.
I’m impressed that you found a doctor who would prescribe CBD oil.
CBD oil from a doc is indeed a rarity
Thanks Manatee! I so appreciate it and no rush, get to it at your convenience. As for the CBD oil, I too was surprised. Indeed, I still can’t believe it’s now legal in Florida. Never thought I’d live long enough to see that happen… I have always preferred D.O.'s to M.D.'s and feeel lucky to have found him. It’s odd, we graduated the same year from Eckerd, but didn’t know each other at all. He was in chemistry, I was in music - opposite ends of the campus.
Word, GB! I’d like to think that we’ll be seeing more of it as the truth gets out about its medicinal value. The Charlotte’s Web stories are quite compelling and CBD has helped so many kids!!
I did both. Choir the whole time I worked on my bio degree. I know a heck of a lot more biochemistry than I ever expected to back then.
I think the high number of scientists who are also musicians is fascinating, and knowing how much lab work you must have had to do it’s amazing you had time for both. I sang a few fundraiser’s back in those years (can’t remember exactly which years) for Wireman Chapel and for the Steinway fund. I got to know Marion well and admired his hard work to keep the choir tradition going… it was always the mainstay of the music dept, along with organ - I played that Flentrop for 4 years too although i was never very good and, like you, I don’t at all regret learning what I then knew and have since forgotten.