Not diagnosed, hoping for any input.

Discussion in 'Your Living Room' started by RinRin, Apr 11, 2018.

  1. RinRin

    RinRin New Member

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    Apr 11, 2018
    Hi, everyone. I’m new here, so as an intro, my name is Erin. I was born in Florida, grew up south of Boston, and currently live in Las Vegas.
    I’ll keep this history as brief as possible, but I was hoping for advice or anything.
    When I was 20 I was in a car accident, had a major skull fracture, recovered but lost my sense of smell (super lucky). I’m 33 years old now (omg that just hit me). For the past almost six years, one of my ears has been loudly ringing and I get vertigo and feel sick every time it rains, or in allergy season, or for no discernible reason. I feel like I'm drunk and high and the world is spinning, or I'm floating, or a few other weird things that are so hard to describe. No pain, just like I'm very drunk and possibly going to vomit.
    In Boston, my primary care doc kept saying it was a sinus infection and I was on antibiotics for almost six months straight. After a while, he said I might be a good candidate for surgery and sent me to see an ENT. Aside from that car accident, I never saw doctors and I just assumed it was best to go with the flow. The ENT did scans and an allergy test, he said that I had allergies even though the test was negative for everything, and my sinuses were narrow (though the cat scan didn’t show them as especially narrow, confirmed by another ENT later). He did “balloon dilation” surgery on my sinuses anyways.
    I still felt exactly the same after, so I called the ENT. The office said I was done there and go back to my primary. Primary doc had left the practice(it took about a year from his referral to this point), whoever answered the phone referred me to a new one that had a mandatory 3 month wait for new patients.
    Spring comes, it’s rainy and everyone’s allergies are going nuts, and my ear starts ringing so loud I can’t hear people talking at work and I become a homebody, too dizzy and nauseous to go out. I decided two things; to see a neurologist and confirm its not a brain tumor and to move to Las Vegas because I’m a city person that can’t walk straight when it’s raining, and Vegas seemed perfect.
    Only one neurologist didn’t need a referral from a primary or have a four to six month waiting list, Angel’s Nuero in Taunton (if I knew yelp had reviews on doctors then, I wouldn’t have gone). I went there, it was fishy from the start. The doctor didn’t talk to me, or have my medical history or family history, and he wrote a script for migraines in minutes. I said it seemed weird to diagnose me without any information at all, and he literally said “We’ll do an MRI to cover our bases.”
    The MRI showed no tumor (confirmed with a better doctor), just scar tissue from the accident and a few cysts. So I moved across the country, about four years total of this by then, and it has been a bit better here without all the weather. I’m finishing my degree in computer science and working in a factory. One morning I was watching some silly court tv show, and this guy’s wife thinks he has depression cause he sleeps all day, and he says his menieres disease makes him unable to do much when it rains. (it was divorce court, I can’t find the episode but in the end they decided to move to California where the weather wouldn’t be so bad or something)
    After looking into it, it sounds like exactly everything that I’ve gone threw the past four years. I saw an ENT out here and just flat out told him I want to be tested specifically for this. The hearing test showed some hearing loss, the balance test showed irregularities, and something where they put electrodes on me and a thing in my ear was irregular. I didn’t see the results, this is just what he said. And he tells me if it was menieres he would expect more hearing loss and tells me some exercises to move crystals around in my head, which I thought was him brushing me off but turns out that's a real thing. I do the exercises and they just make it worse. Then my job cut my health insurance because I’m in school and they don’t want me at full time if I can’t work 60 hours a week.
    Las Vegas actually does have a high pollen count in the spring. There’s lots of plants and flowers everywhere, and right I’m back to feeling vertigo that's almost like an out of body experience where my head is floating on it’s own and my ear is just screaming. I actually called out of work the past two days saying I had the flu (which is what I always say cause it’s too hard to describe why I can’t get behind the wheel of a car cause I feel like I woke up drunk and high) and now I’m trying to get myself moving so I can make it to class tonight, but everything seems to make it worse except laying down. I have a pretty good set up for doing calculus and boolean algebra homework while laying down.
    I’m hoping to graduate soon, hoping even more to find a place allowing me to work from home, and also get back in to the doctor. It’s just been so long and so many doctors, I’m just tired. I know people who diagnose themselves with everything they hear about and are major hypochondriacs, and other people who got caught up with pain killers and drive doctors nuts trying to get pills, and I feel like I’m getting lumped into that category so I don’t talk about it much at all with friends and family. Also my friends always think I’m blowing them off and get mad at me. I don’t want disability checks or anything, all I want is a name on what ever this is that happens to me all the time, and maybe just some idea what I can do to lessen the vertigo. I found a sort of back alley doctor that prescribed me xanax to help me sleep, and sometimes it completely stops the ringing in my ears, which he said it might, but I can’t do much other than sleep after taking it. The silence is just so beautiful though.
    If you have advice, or ideas, or anything at all I would be happy to listen. I’ve got zero input on this, aside from the aforementioned doctors, and I don’t know what else to do. I’m scared that I’ll graduate and get a great job and then miss a week of work cause walking is so dreadful. It’s fine to call out of my current job, it’s a sweat shop, but if I start trying to work as a software developer and lose my first job over this it will look terrible on my resume.
    I have friends and family but on this subject I’m completely alone. I don't date or drink or see my friends and this is slowly destroying my remaining relationships. Sorry this is so long but I guess that's everything at once.
     
  2. Nyynth

    Nyynth Member

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    Apr 3, 2018
    There isn’t a specific test for this. Diagnosis of exclusion. General consensus here is PCPs and ENTs are basically useless and syndrome progression can vary wildly. l had no hearing loss the first few years. No one here can tell you it is or isn’t, but it does resemble it quite a bit, yeah. See a neurOTOlogist. Could be worse. Could be neurofibromitosis. Which you know it isn’t because no tumor.
     
  3. Nyynth

    Nyynth Member

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    Apr 3, 2018
    Oh, yeah. That said, try antivirals once you know. Low risk, some people stay or even reverse progression, but it doesn’t work for everyone. If you do get to that point, Valtrex generic. Northstar manufacturer. And make sure it’s Northstar. It’s hard to get a script sometimes. If you want my honest opinion, yeah it sounds really similar to what I know of menieres. You can start the JOH regimine without risk as well. The idea is it may be caused by the herpes virus, though controversy surrounds this idea — I believe it is as I developed BFS at the same time. Do not stress. Do not. It is hard to not, but it will make it worse. Stress is an incredibly common trigger.
     
  4. Nyynth

    Nyynth Member

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    Apr 3, 2018
    You should look into the copycat diseases as well, but with ear involvement probably won’t be something like MAV.
     
  5. RinRin

    RinRin New Member

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    Apr 11, 2018
    Thank you, honestly hearing that these doctors are useless for others lightens my thoughts up a bit. Everyone tells me just to trust what they say and I'm like look, they aren't saying anything and I'm so sick of this. It's tough that they can't just clearly diagnose this though.
    I did look at some other similar things google popped up, but since I'm not in chronic pain it doesn't seem like much else fit. I'll look into the medication, I might be able to get a script for it and try it out.
    I have been working on the regime everyone recommends to help, cutting salt and everything. I only started doing it recently because I was hoping the last doctor could just spot this and clearly say whats causing it. Didn't want to lessen the symptoms by being healthier and he says I'm fine, guess that might be silly. Thanks again.
     
  6. mbgphoto79

    mbgphoto79 Member

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    Greensboro, NC
    Try a chiropractor who can perform an atlas adjustment of the cervical spine. There’s evidence of early head trauma presenting as your symptoms between 10-15 years after incident. Good luck!
     
  7. Nyynth

    Nyynth Member

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    Apr 3, 2018
    Occasionally TMD can I mimic or cause menieres. May want to look at the jaw route, too.
     
  8. RinRin

    RinRin New Member

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    Apr 11, 2018
    I've never seen a chiropractor before, that could be a good thing to look into. I'll check it out. And the TMD too, I've got some reading ahead of me. Thank you.
     

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