As some of you may know, I have been spaced out for about 9 yrs. I always feel this way. I still go on with my life but the quality of life is not as good as it use to be. I had all of the ENT test done and the report came back unilateral weakness to the right of 10% which they call insignificant. fixation supression was present. bilateral weakness was absent. directional preponderance to the left of 20% which they call insignificant. the clinical impression is positonal nystagmus and the results suggest an abnormal vng. So I asked the ENT do I have BPPV and one said yes and the other asked if I get vertigo, which I don't and then told me no. He said if you have an abnormal VNG then we do vestibular therapy which I did for 6 months and did not help. He then said well that's all we can do. Is there an ENT here or somebody that can give me a straight answer?
i found almost all ents know nothing about vestibular issues. they just dont have the training. they are little more than a gp. you need to see a neurotologist. neurotologist specialises in this field. even a neurologist doesnt fully understand vestibular issues.
I agree, ENT’s don’t seem to know much. I have been to a Neurotolgist and Neurologisy and had all of the CT scans and everything comes back normal. I have been to every doctor you can think of to the point where I feel like I am almost one myself. I just don’t understand how I can have issues with the test the ENT’s gave me and they tell me not to read into them too much.
Don’t think I can offer much of a shred of comfort here but I know how you feel, and how demoralizing the search for a diagnosis can be.
I’ve seen six ENT consultants, two neurologists and four stroke doctors so far over a two year period of continuous and gradually worsening dizziness with nausea and as I sit here with a spinning head and my life pretty much reduced to hoping I’ll wake up tomorrow feeling a little better, it’s hard to find anything positive to grab onto.
I’m in the UK and after seeing specialists in Derby, Birmingham and Leicester I finally got a consultation through my GP with a Prof Bronstein at University College Hospital London. I was really hopeful that something new would come from the appointment as the guy appears to be one of best in the country.
However after an encouraging half hour session with one of his very keen junior registrars, my 15 minute session with the prof turned out to be pretty much a repeat of every other consultation I’ve had, ending with a possible diagnosis of PPPD, (that good old fallback when every other diagnosis doesn’t hit the spot), followed by ‘I’m sorry but aside from exercising regularly and trying not to be too anxious about it, we can’t help you any further today.’
The last guy I saw was an ENT consultant in Derby, who was refreshingly cynical about the PPPD diagnosis, saying that in his opinion it was no more than a convenient catchall for consultants to use in order to be able to say they’d reached a diagnosis; but that it didn’t really mean anything in clinical terms and certainly didn’t help the patient. He highlighted the problems of diagnosing issues with the vestibular system as it’s buried so deep inside the skull and is very difficult to scan accurately. He said that it was his belief that in 50 years or so when imaging technology has advanced to the level where individual nerve tracks can be seen in detail, it might very well be possible to identify and diagnose many of the issues that at present are being labelled with anomalous titles like vestibular migraine, PPPD etc.
My only saving grace so far is that up to present, when I either eat or chew gum, my symptoms immediately lessen in intensity, so I chew gum manically all day every day. Trouble is that as my symptoms worsen, the gum is proving far less effective, and my jaw aches!
TBH I can’t bring myself to look forward to the next few years very much.
i went threw this for 10 years. then i finally found a doc who specializes in these issues.
What did you have and how did you get fixed. Your doc is not in NY by any chance?
Maybe the chewing things that helps is a clue for you. have you gone to a dentist or looked into TMJ?
I was hoping that the prof. in all his wisdom might see the chewing thing as a clue.
He literally shrugged and said
‘I can’t offer any insight into why that happens’
i have menieres disease and yes i am and my doc is in ny. lol. syracuse, ny. i see a dr. charles woods at university otolyngology.
Glad you got a diagnoses. I am in lower NY so a bit far for me. I thought Menieres for me but I because I always feel spaced out they said no. Plus I don’t get vertigo, just a bit of a drunk feeling for me all the time.
Have you looked up TMJ?
rocksolid- since you have struggled for 9 years, you should consider the travel to waffalobill doctor. i was helped by otolyngology. i am better now. but i had to find the right doctor. you need testing that dizzy clinics do to rule out things. i know NY is big, but why not think about calling. it could change your life for the better. no ENT or Nuerologist, PCP, could help me or diagnose me properly.
good luck
doc is in syracuse. i actually live in lower ny to. binghamton. hes the closest to our area who specializes in it.
i am close to the bottom of the state. i can be in PA in under a hour. the trip to syracuse is about a hour. would be shorter but i live in the country and have to drive to town to get on the highway. it sucks but going to docs who cant help is worse. i made dozens and dozens of trips to docs who did nothing for me cause they don’t have the training. over the course of 10 years i could have bought a couple new cars with the money i wasted on docs who did absolutely nothing for me. i remember one trip to the hospital. they did blood work, cat scan. i sat in a bed in the er for 4 hours. just to occupy that space cost $5000. just to be told nothings wrong, go home.
I will think about it. it would take like 6 hrs to drive up there. been to so many docs who have not helped
you must be way down the east side. might be closer to hit nyc or even Conn.
i here you waffalobill. before i was diagnosed properly, i had been to so many doctors. had been admitted to the hospital. no real answers. i knew i was days away from being hospitilized. thats why i say, if you found a good one, that is gold and she should consider it. i travel different state to see mine. its about hour and half with traffic. but, its only every few months now. so many of these idiot doctors today cant or wont help. you get the MRI-catscan, blood work, youre fine must be crystals. or must be viral infection. had i not seen my doctor, i dont think i would be working. i would have had to give up my job of 27 years. she should consider having a friend drive her or like you said look at NYC- otolaryngology dept. dizzy clinic. i read in 2 medical articles recently, that VM- is the second cause of vertigo. so if its so high up there, WTF!?! excuse me but why do doctors have no clue about it. needless suffering. they were actually talking about cutting my nerve before my proper diagnosis because i had VN - diagnosis. can you imagine? cutting it, gone forever when i dont have it.
rocksolid- i bet it, we all do. we all have had to fight and see countless doctors until that magic one says i am100% sure this is what you have and we can treat it. how can it hurt you to try another doctor, one that has helped waffalobill. what if this doctor can help you. i know this is miserable and hard. but there is help. i found i had to guide my treatment, until i got to the final doctor who saved me. have a friend drive you. think about it.
I can do the drive, it’s just so far. My wife is ready to kill me ( not really ) but she has put up with a lot. I always said maybe this doctor can help and they don’t and I know what my wife is thinking. I will reach out to the doctor that waffalobill say and see if they can suggest somebody down here. I am on Long Island.
hospital stay was bout $20,000 one time. no answers. ER visits had to total $40,000 or so. 6 cat scans,mri, dozen ekg, countless bloodwork. could have bought a house. got no answers.