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Think it may be Menieres, see the ENT this week

Discussion in 'Your Living Room' started by caseyh46, Sep 4, 2017.

  1. caseyh46

    caseyh46 New Member

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    Hello all... Apologies if this is in the wrong place as I just found this forum after much reading on my symptoms.

    So, about 4 months ago I had my first episode of vertigo... since then I've had 9 more attacks. I've gone to the doctor when I can but my symptoms don't seem to be "textbook"

    My vertigo episodes last 5 - 10 minutes but it's pure left to right, room spinning, violent, holy crap hold on to something vertigo. I don't get much warning when it happens, maybe 3 to 5 seconds when I can feel it building and then it hits. Afterwards I'm usually wrecked and in a cold sweat and I'm unsteady for a few days. I end up living on meclizine and Zofran to get through work from the post attack dizziness and nausea. The nausea and dizziness seems near constant but after an attack, I am quite unsteady for a day or two.

    Along with all this I have terrible tinnitus that is on-going, pretty much constant. It drives me crazy. Along with that I feel like I’m constantly trying to pop my ears. This is all typically in my left ear.

    I had an audiogram this past week and it showed slight hearing loss. I don't know what my hearing is like during an attack because I honestly don't have the capacity to think about it.

    I know many people have much worse symptoms than me but I really can't figure this out. There's no trigger I can find. I get no relief from the eply maneuver and after this many months I don't believe it's viral or bacterial, nor do I believe it's BPPV as it's completely random. Morning, evening, working out, walking, sitting... there's no trigger.

    I will say that when all this started was during one of the most stressful times in my life. I'm not sure if it's all related or not but the anxiety this has caused me to deal with just seems overwhelming at times. I'm constantly worried about the next attack. 10 in 4 months was enough to finally tell my Doc that I gotta figure this out or plan on seeing me once or twice a week forever until this goes away!

    Anyway, I know there are those here with a lot more knowledge than myself so I'd like to hear what you think this may be. I’m looking forward to, and at the same time very anxious and nervous about seeing the ENT. I’ve had recent blood work and the audiogram I’ll take with me so hopefully that will help him figure this out. At this point, BPPV or Meniere’s or whatever vestibular hijinks this may be… just knowing what’s going on I hope will help the anxiety and get me some answers.

    Thanks all...
    I look forward to learning more and it's nice to see there are plenty of others that deal with this sort of thing.
     
  2. KellyP

    KellyP New Member

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    Hi Caseyh46,
    I understand. I also am going to the doctor this week also. In preparation, I have written a full history of my symptoms as I forget (brain fog) and when I’m anxious I have a hard time remembering even simple things. Someone on this site suggested reading http://www.menieres-disease.ca/diagnosis.htm which helps understand tests to rule out other diagnoses. There is also information about symptom overlap with migraines, which I’ve learned you don’t need to have headaches to have migraines. There is also TMJD, which can cause similar symptoms to Meniere’s. Many people on this site have found relief by taking antiviral medications. If I understand if you’ve ever had any of the herpes (chickenpox, shingles, cold sores, etc.) there may be a correlation, which is why the medication works. (To the more learned and savvy members of this site please feel free to correct any misinformation I may have presented.)

    Find a doctor that has experience with Meniere ’s disease. I have an appointment with a neurotology, which is an ENT subspecialty that diagnoses and treats inner ear disorders. I looked on Healthgrades and read the reviews. I have collected my medical records and dental x-rays to bring with me.

    There are many things behaviorally and dietary to help reduce the number and length of attacks. Many people also take supplements. I have had the diagnosis for 6 years but have had symptoms for 15 years. My Meniere’s presents a little differently than textbook so I will continue to research and rule things out as it is a diagnosis of elimination.

    While the symptoms are frustrating and at times terrifying just know there are others and you are not alone. People here are really supportive and non-judgmental as well as a wealth of knowledge. If you can remember that it does not have to define who you are although may change when and how you do things. You will learn workarounds and be sharing tips with us in no time =-) Be patient and gentle with yourself and the Meniere’s as it may become an unwelcomed friend who we learn to make peace with. Not to say I don’t have meltdowns as this forum demonstrates but most days it’s the background noise of my day not my focus. Lastly, try to keep humor about it…there are actually mugs that say “I’m not drunk I have Meniere’s” or as I like to call it manures. We all cope differently but please share as there are people out there who need you too.

    Good luck at your appointment. Let us know how it goes. You will be in my thoughts.
     
  3. caseyh46

    caseyh46 New Member

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    Thank you very much for the reply KellyP

    I had another episode this morning and it sucks dealing with it at work. I managed to catch it early and managed to get home before it really hit me and I could ride it out, now I'm just dealing with the fatigue and being out of sorts and a bit wobbly.

    I just hope he tells me something, no matter what it is. At least then I can know and try and move forward. Unfortunately if this isn't something that can be taken care of then I can't keep working (military) and that just adds another layer of stress to all this. I'm headed back to my GP tomorrow just for documentation of yet another episode. I'll take my meclizine and go home and rest hopefully.

    I've been trying to read all I can on the TMJ thing and the migraine thing as well. I'm unsure as I've never had a history or issues with either of those things but I also know that that doesn't mean anything. I guess I mostly just hope I got a good doctor that will listen and really try and help instead of treating it like an assembly line and move on as quickly as possible.

    Again, thank you for the kind words
     
  4. Pupper

    Pupper Active Member

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    First off...that's a terrible thing to say! LOL. I get your meaning though.

    Secondly, I'm very sorry you're going through this. Strange how your episodes are short, but the effects last for days. Most Meniere's sufferers have their own set of symptoms, but, yeah, that just strikes me as odd. I'm glad you only have 5 to 10 minute attacks. Man, that would be awesome. (I hope you get MY meaning).

    Know that we'll stick by you Casey, and try and help the best we can. Sending comforting vibes your way )))))))>>>>>>>>
     
  5. caseyh46

    caseyh46 New Member

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    Absolutely right Pupper... that's certainly NOT how I meant that! It's terrible anyone has to deal with this!!

    I'm not saying Meniere's is what I have, I honestly don't know. It's just been going on for so many months and the attacks have happened so many times now that my primary doc said maybe it's that but go see an ENT... so that's where I am now.

    I also realize that coming here to complain about a 10 minute attack seems pretty lame around here. I honestly don't know what I'd do if it lasted hours. 10 minutes leaves me drenched in sweat and feeling like I was trapped on a roller coaster. My post attack symptoms are just general off balance, dizziness, and freaking nausea that tapers off over a day or two (queue the meclizine and zofran), depending on how bad the episode was.

    I thought it was interesting that this morning I had a feeling like something was off and it was impending. I'm just glad I made it home. Trying to notice things in my ear and my vision seemed sketchy leading up to it.

    Thanks for the support. I'm learning as much as I can. Hopefully I'll get good news and there's some magic pill or dance move that'll make it all go away.

    Thank you so much.
     
  6. Melc

    Melc Member

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    Great dialogue, caring , and understanding not to mention empathy on this thread. It's so good to see.

    As someone who has dealt with this crap for 20 years, I'd like to suggest that when ever possible see a neuroTologist . They are more specialized than ENT s. That not a knock on them, but you may get better results if you can see a neuroT. Upper case T is to,differentiate from neurologist. Different.


    Here's to us all getting some relief .
     
  7. Nickyschick

    Nickyschick Member

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    10 mins or 10 hours--- and the after effects --they all stink. Don't be afraid to come here to vent or get advice. Good Luck!
     
  8. forevergrateful

    forevergrateful Member

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    "I also realize that coming here to complain about a 10 minute attack seems pretty lame around here. I honestly don't know what I'd do if it lasted hours. 10 minutes leaves me drenched in sweat and feeling like I was trapped on a roller coaster. My post attack symptoms are just general off balance, dizziness, and freaking nausea that tapers off over a day or two (queue the meclizine and zofran), depending on how bad the episode was."

    Please dont apologize for talking about or describing any part of your personal episodes. If anything has become more clear to me, it's that this beast deals differently with everyone. I wish it was a one fits all kinda thing, but it isnt. My episodes also are briefer than some described in this forum, but it doesnt make them any less significant to me. The "lingering" you talk about is also familiar to me...and I"ve been dealing with full blown Meniere's for the lasts 18 months, though diagnosed in the 1990's. I hope you find a Dr who truly takes a sincere interest in your situation. I havent been so lucky....but I do rely heavily on this forum for personal advice/suggestion and support. In fact, it is because of this site that I started my Antiviral approach along with the JOH regimen. I do believe this approach has helped me lessen my episodes in both intensity and frequency, as well as lessen the tinnitus to manageable levels (most of the time) and improve my tolerance to loud noise (hyperacusis). Having said all that, I've recently had a setback with two weeks of recurring symptoms....but I'm sticking with the treatment plan for the foreseeable future. There is a lot of information to try to absorb. Sometimes doing the research is exhausting, but I've also learned I need to be my own advocate. I agree with another earlier post, be kind to yourself and patient. There is no easy fix and it's not something most will understand...except for those of us here. Trust me, we understand....so ask/talk all you want.
     
  9. caseyh46

    caseyh46 New Member

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    Funny story... not so much.

    I went to medical and ended up seeing a different primary doctor than usual. It turns out that she's quite familiar with Meniere's disease and diagnosed me as such. Of course I'm to go see the ENT and try and figure a way to control the systems. She's put me on Maxide which is a diuretic and clonezepam dissolvable for the anxiety.

    Now I'm back home and I guess it's starting to sink in. This has such major implications on my career. This is the first time in 17 years I'm not "fit for full duty" and now I'm wondering how it's all gonna end with regards to my career. Not to mention the Wife and kids I support.

    I guess I just keep plugging along and see what the doctors say. I want to thank everyone again for the words of understanding and encouragement...
     
  10. Pupper

    Pupper Active Member

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    The career impact is the one aspect of Meniere's I'm shielded from, since I'm self employed and work from home. I often think about MM sufferers with with regular jobs. I just cannot imagine.

    Just a side note. People new to Meniere's often read the phrase "there is no cure". I remember reading that a lot when I first got MM, and it was awfully deflating. Long story short, a guy in my neighborhood had a VNS and he's always on the move. Either fast walking, endurance bike riding, or riding his motorcycle. I never knew he had MM or surgery until he recently told me. He seems perfectly normal. So, "no cure" has a very circumscribed meaning.

    I don't know what line of work you're in Casey, but you'll most likely be able to continue.

    (Please tell me you're not a helicopter pilot or figure skater).
     
  11. Pupper

    Pupper Active Member

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    P.S. When I say I can't imagine MM sufferers with regular jobs, I mean, the worry they must be hit with when they first get, (and prior to helpful treatment), must be very hard to deal with.
     
  12. Catofsail

    Catofsail Member

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    There is nothing quite like turning green when in a meeting with your supervisor, sliding down to the floor and vomiting repeatedly in her trash can. She has to call your parents to come get you...

    In some ways I guess good that she saw the severity of what I was dealing with.

    I'm so sorry you are dealing with this too--this group has been nothing but supportive and without a bunch of judgement about symptoms. We all get how scary and life impacting it can be. I used to ride my motorcycle 200-600 miles a week. I'm lucky if I'm doing 100 a month now. Still hopeful I'll get back to my usual but will be okay if I don't. We adapt. Who knows, maybe a sidecar in my future !
     
  13. caseyh46

    caseyh46 New Member

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    My goodness Catofsail... that's like my worst nightmare come true. Sorry you have had to deal with that!

    If it wasn't obvious I'm military and it looks like now I'm going to be farmed out and stashed in a side job and given 6 months to be able to control the vertigo... if not, well... early retirement is in my future. At least in that regard it's a win win. It's just now how I saw the later years of my career going, being taken out at the top of your game sucks!
     
  14. KellyP

    KellyP New Member

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    Hey Caseyh46,
    Talk to your supervisor (Master Sargent or Commander) and start to collect information about discharge options, then call the County Service Office and only talk to an expert in benefits (let me know if you want a name and number of someone I trust). The type of discharge (medical or general) can have implications that you are not aware of yet. The County Service Officer can also help you figure out how to move forward if you do need to discharge/retire. There are programs out there but as with anything in the Military you have to plan 4 steps ahead of where you are in order to work the system to get where you want to go. Also, don't give the military too much information until you know where you're headed. If possible explore transferring to a paper-shuffling job or something where there may be more flexibility (may depend on branch)...you are so close to full retirement benefits! While I'm not in the military, I work with it so I know how bureaucratic it can be. I also know there are fewer slots available which is making everyone in the military more stressed about their careers. Collecting information could be a great project for your wife =-)

    I'm glad to hear that you felt heard by the doctor. Don't be scared to ask for a referral to a neuroTologist if you feel it's necessary. I just want to make sure you end up with the right diagnosis, as there are people who have had the wrong diagnosis for years. You have decent insurance right now so carpe diem. I have read that if you are not connecting well with your doctor to move on...may be easier said than done.

    Ok off the soapbox but I was thinking about your situation all day and I got worried. My free two cents =-| Really not telling you what to do just wanted to share my brainstorm session I had about your situation.

    Hang in there!
     
  15. caseyh46

    caseyh46 New Member

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    Thanks for the advise.... luckily I'm in a position where I have direct access to commanders and the upper chain. If they do retire me it'll be a full retirement, so I really don't have all that much to loose (other than my career) thank goodness.

    I did make it to the ENT today. He spent a grand total of 5 minutes or so with me. Turned my head real quick, had me stand with my arms out and eyes closed, and looked in my throat. He then said it could be Menieres or the Migrane vertigo thing but I need to go have a bunch of other tests done at different locations and then come back and see him. So I'm scheduled for the MRI and MRA, my audiologist report wasn't good enough for him so I have to go see his, then I have to go to a third location to do a bunch of balance tests. THEN go back and see him. I gotta be honest, I wasn't all that impressed... BUT, this is the first ENT I've ever encountered. Hopefully the group here can tell me if I should change doctors now or stick it out. I'm somewhat frustrated because I brought him proof of some hearing loss, a log of all the vertigo spells and I swear he did not hear me, or just didn't listen when I was telling him about the ringing in my ears. Oh well... guess I'll start the doctor quest to appease him.

    Thanks all
     
  16. KellyP

    KellyP New Member

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    So glad to hear that you will have full retirement for what you've done for our Country...thanks by the way and thank your wife too =-)

    From what I've read, if you're not feeling heard you should switch doctors until you find one that is able to listen and is a human being. Sorry it was a disappointing appointment.

    Unfortunately, it sounds like the battery of tests I was given as well. The balance tests were super freaky as they got my eyes jiggling (nystagmus) on command, it also set off a vertigo attack but all in all it was the inconvenience of taking time and going to so many appointments.

    If and/or when you choose to go to another doctor, you will at least have the tests to take with you.
     
  17. Pupper

    Pupper Active Member

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    Casey,

    He didn't listen because anything he could have said would be pointless without the necessary empirical evidence to narrow it down to Meniere's. It's just SOP to run the tests.

    For example, here is a list of things it might be besides Meniere's. (You can click on the Meniere's tab while you're there, to open up a world of info. It's a popular site.)

    http://www.dizziness-and-balance.com/disorders/index.html


    I do know what you mean though. For myself I'd read enough to know I had Meniere's early on. I felt like telling my ENT, come on man, how about we save me 2 months of delays with the testing and get on with it.

    But yeah, it doesn't work that way in an advanced, systematized, (and lawsuit happy) country.

    When you should consider switching ENTs is after you've been diagnosed with Meniere's, and he won't approve certain remedies/procedures/surgeries because of some personal bias.
     
  18. jkc

    jkc Member

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    Go see a Neurotologist not an ordinary ENT
     
  19. zotjen

    zotjen Member

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    Lots of tests is what you need to rule out other things, starting with the MRI. A bad ENT would be one who spends 5 minutes with you, prescribes a diuretic and tells you to go on a low sodium diet, then come back in 6 months for a follow up.
     
  20. Pupper

    Pupper Active Member

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    That's what my first ENT had me do (but not six months, more like 2). Then I found out his practise is 95% cosmetic surgery. At least he sent me to The House Clinic after the low sodium didn't work.
     

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