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Menieres Vertigo

Discussion in 'Your Living Room' started by billiejoe87, Sep 11, 2018.

  1. billiejoe87

    billiejoe87 New Member

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    Hey guys, I'm after some clarification.

    My otologist told me he thought I had menieres a few years ago when I kept having on and off low frequency tinnitus and fullness. I had grommets put in and these seemed to have helped a lot.

    I have been sick with a cold the last 2 days and today was feeling a bit lightheaded in the morning when standing up. Later on today while driving on the freeway, I suddenly started feeling quite dizzy and had a lot of trouble focusing. I ended up having to pull over at the next exit. I felt very lightheaded and unable to focus properly and it felt like things were moving a little. I am still feeling a little "off" now hours later. My existing tinnitus did not increase or change at all, and I haven’t noticed any hearing loss. Does this sound like menieres vertigo? Or can my cold be causing this? One of my grommets is blocked at the moment, but it hadn't been causing me much trouble, so I've been ignoring it.

    Thankfully the dizziness wasn’t violent, however it did make my head feel off balance whenever I changed direction and I did feel a bit nauseous in the car when my wife drove me back home. Dizziness and vertigo has thankfully been very rare for me, and I’ve only ever had it come on suddenly like that once before which was pre-grommets about 6 years ago. It just scared me today while driving how quickly it came on today. I had no idea how to control it or what to do, other than try and pull over.
     
  2. Jimcolorado

    Jimcolorado New Member

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    menieres vertigo. What you described is basically what I experienced when first diagnosed with the condition.
     
  3. nicmger

    nicmger Member

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    BillieJoe - what you described sounds like an inner ear infection or imbalance. I have experienced that at times. In those instances I either went with steroids or antibiotics to try to clear it up. In those instances Meclizine worked well for me to offset the off balance feeling.

    My Meniere's vertigo - is instant room spinning round and round like a merry go round on crack for hours.

    I would recommend that you pick up some Meclizine - available over the counter and many stores even have their generic version.

    Good luck
     
  4. Lupo

    Lupo New Member

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    Walgreens carries a chewable (Meclizine 20mg) that you can instead of chewing and swallowing, put under your tongue and let it get into your system that way....incase you start throwing up.
     
  5. June-

    June- Well-Known Member

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    Billiejoe, go to an ENt. He can determine whether the origin of the problem is inner ear or middle ear, infection, menieres or something else entirely. It may require several tests. We cannot tell. You want the right treatment for the problem that is causing this not just to treat the symptom.
     
  6. billiejoe87

    billiejoe87 New Member

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    I am having an attack right now. It started about 2.5 hours ago while driving and shortly after eating out.

    I had just been to Professor Fagan who is an Otologist and one of the longest practicing and top menieres experts in Sydney who has all my history and he emphatically said it’s not menieres. I did a new hearing test today and there was no change from my last one. All of them above average.

    He strongly believes it’s migraine vertigo due to the fact I suffered plenty of headaches as a young teen, have no hearing loss during or after these episodes, and have recently had huge stressors in life (Only got out of mental health clinic on Friday after being hospitalised for over 2 weeks due to extreme anxiety and depression. He believes all this with the addition of my cold at the moment has triggered this.

    He also told me to stop going to Dr. Google and trying to diagnose myself with menieres and to check in with him by phone weekly going forward.
     
  7. billiejoe87

    billiejoe87 New Member

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    I should also add today I noticed how much of a tingling and numb like feeling I got in my hands during the vertigo. It all started today about 30 minutes after eating a bowl of cheese fries.

    I still don’t know either how to classify the type of vertigo I get. I find it incredibly hard to focus, I feel totally disconnected from the world, vision is a bit blurry, and I realised tonight when my wife drove me home that bright headlights on other cars were hard to look at. I couldn’t walk in a straight line, however if I lie down and close my eyes it’s not too bad. I keep reading about how severe vertigo with menieres is and hugging a toilet bowl or bucket for hours on end, and I don’t know whether menieres vertigo is always like that.
     
  8. June-

    June- Well-Known Member

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    I was going to say look up Migraine Associated Vertigo. Aka MAV There is a book people here sometimes recommend called Heal Your Headache. Do a search onMAV on this forum.
     
  9. billiejoe87

    billiejoe87 New Member

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    Thanks for the info.

    I am still really scared as I’ve had in the back of my mind for years now that with the fluctuating aural fullness and fluctuating tinnitus that it has always been menieres.

    Years ago I had grommets put in as my Otologist said he could see my ears were not equalizing properly. That got rid of the aural fullness.

    I also noticed seperately about 3 years ago that my right ear was not hearing as well without any other symptoms. My Otologist who is one of the top menieres people in Australia had me do a hearing test which showed a big flatline loss in the right ear. That was the one and only time in what must be 50 hearing tests I have done that showed a hearing loss. He told me it was not indicative of menieres as I had no other symptoms and it was a flatline loss across all frequencies, not a low frequency loss. He told me the hearing loss was conductive. The next hearing test I did months later showed all the hearing came back and I haven’t had it happen again since.

    Now that I am having these isolated vertigo spells, the same otologist is telling me it’s not menieres and it is actually Migraine related. This guy is known as being one of the best in the business and has written big papers on menieres and mentored many other otologists, and I just cant help thinking when I read up on websites that maybe he just doesn’t want to give me no hope by telling me it’s menieres.

    Even though my symptoms have all come at different times, I have at one time or another had virtually all the menieres symptoms just at different times, so shouldn’t he diagnose me with it?

    I really think he’s worried about handing me a death sentence. When I read forums like these they really scare me on what menieres does to a person.
     
  10. Clare

    Clare Active Member

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    Billiejoe, I'm sorry you are going through this. It's frustrating to not have a clear diagnosis that tells you what beast you are confronting. Meniere's disease describes a set of symptoms, and the diagnostic process involves ruling out other things that come with similar symptoms. If your symptoms suggest the possibility of something other than Meniere's, it's important to go down that path and find out whether you may have something that is treatable or requires a different kind of intervention.

    Low-frequency hearing loss is one of the four criteria for diagnosing Meniere's. The others are aural fullness, tinnitus, and vertigo. For me, there has never been any doubt about how to classify my vertigo -- the world spins around me, and I am unable to move my head even a fraction of an inch without setting off intense nausea.

    When I read in one of your earlier posts that bright lights were difficult for you during an episode, my first question was whether it might be MAV. I don't have that, but have been asked the question about bright lights many times to rule out migraine as a cause of my Meniere's symptoms.

    Meniere's isn't a death sentence, but it really sucks because of its progressive nature and lack of good treatments. If there is a chance that your symptoms are related to migraine instead, what is there to lose by going down that path with your doctor? I hope you get checked out by a migraine specialist and find a way to manage your symptoms. If it turns out to be Meniere's, we're here for you -- but I really hope it's something more treatable. Best of luck to you.
     
  11. June-

    June- Well-Known Member

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    Billie joe it is not a death sentence but it is 8mportant you find out whether it is MAV or Menieres. If you guess wrong and have destructive surgery to end the vertigo but it is MAV, the surgery will not help. You will have sacrificed your hearing for nothing. This is very important to observe closely, do a little experiementing, have appropriate tests etc. So you get the correct treatment. If it is menieres, there are many ways to treat it but first you need to look closely and consider your doctors observation so you head i the right direction.
     
  12. nicmger

    nicmger Member

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    Billie Joe - if they have not already done so, your ENT/specialist should have all of the testing done. Full vestibular testing, scans etc. No test can confirm that it is Meniere's just can rule out almost everything else.

    And while your dr may prefer you to stay away from self diagnosis - in my experience each person needs to understand the diagnosis/symptoms and be their own advocate. If I hadn't pushed back (after too long just "accepting what dr said) I would still believe I had benign positional vertigo. NOT the same thing. In some ways though it is not a bad thing to not be given the Meniere's "label" - reason is that I have that label (and it fits) but it also means that when I have other issues that "could" be similar to something within Meniere's doctors will automatically fall back to "well you know that Meniere's causes vertigo" "well you know Meniere's can cause ear fullness". Which of course I know..and have lived with. But also have learned the difference between an ear or sinus infection causing imbalance; ear infection causing fullness and/or balance issues; etc.

    But definitely ensure that all testing is done if it hasnt been already.
     
  13. billiejoe87

    billiejoe87 New Member

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    Thanks for everything guys. I really appreciate your replies.

    My other Otologist who works closely with the professor who diagnosed me with MAV, called me last night after I sent an email, and told me that MAV and Menieres overlap greatly, and to take the migraine prevention medication. He also told me that it would be unlikely to diagnose it as menieres at this point due to the lack of low frequency hearing loss in any of the hearing tests I have done, including one right in the middle of the two vertigo spells I had.

    He told me it is absolutely not a placebo and is will evidenced that stress often aggravates these symptoms and that whether MAV or menieres, treating my stress levels is very important. He also told me that even menieres is not a death sentence and around 80% of people control it with lifestyle modifications like reducing salt, and that treatments such as steroids and gentamicin etc. for people who cant control it are very effective for vertigo. He also calmed me by saying that you never know other people's situations and why people suffering greatly with vertigo from menieres on forums etc. Have not gone down the Gentamicin or surgery route, so to take some of the worst horror stories you read online as being only a small percentage of the overall amount of people with menieres who are able to carry on living a normal life.

    TBH, I love hearing natural sounds, however I would give all my hearing in a heartbeat and have cochlear implants if it meant stopping daily vertigo attacks if it got to that point. I think vertigo is the pits, and anytime in the past I thought tinnitus was the worst aspect of menieres I was wrong. Tinnitus and aural fullness are annoying, vertigo is totally disabling.
     
  14. billiejoe87

    billiejoe87 New Member

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    I'll also add, with menieres, the only thing I can see that stops people suffering severe vertigo frequently from surgery is if they are bilateral or worried about going bilateral.

    With Vestibular Implants a very real possibility on the near horizon and cochlear implants already available, isn't there a strong chance that even in the very worst cases of menieres, there is at least hope on the horizon of being able to have a double laby with vestibular and cochlear implants, and shouldn't that be something to look forward to for the people suffering the worst with menieres? They could live a good life without disabling vertigo attacks?
     
  15. June-

    June- Well-Known Member

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    If you have MAV, surgery will not help. Period.

    Antivirals have been successful for a large number of people but not all.

    It depends on what the cause is. Have you had a full workup including mri etc? Other things can also cause similar symptoms. If you have a brain tumor, ear surgery will not help. If you have migraine, ear surgery will not help. Get as much diagnostic info as you can. Try the simple things like a oiding migraine triggers and antivirals as first resort.
     
  16. yanksgirl

    yanksgirl Member

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    Question: What are grommets? I have seen them mentioned in various posts but what are they--how are they 'put in' as is stated by billiejoe87?
    And-- what condition does one have that would require them to be 'put in'? Are they for specific ear issues or ??? Confused!
    Thanks--Yanksgirl
     
  17. billiejoe87

    billiejoe87 New Member

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    Hi Yanksgirl, grommets are very small tubes that are placed in the eardrum to help drain fluid caught behind the eardrum or help equalise the ears if there is eustachian tube dysfunction. They are essentially small holes in your eardrums.

    They have allowed me to have years of no fullness in my ears which has been great. Unfortunately with my 2 recent vertigo spells, my ears now feel full even with the grommets.
     
  18. billiejoe87

    billiejoe87 New Member

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    Thanks June.

    I have had so many MRI's and CT Scans over the years, I cant count them. One Otologist has mentioned I have signs on the MRI/CT (Cant remember which one) of Superior Canal Dehiscence, however the extent of it, and the surgery involved do not justify doing anything.

    Other than that, my current Otologist has tested my hearing which was fine, and has been in the 50 or so tests I've done. I had a balance test 2 years ago which was fine as well.

    I however now have aural fullness in both ears even with my grommets in. I also feel really off. No vertigo (Thankfully), however just really spaced out and a bit floaty. I also have a lot of pressure in the head. Are these symptoms of MAV and/or Menieres? Is it normal to feel "off" days after a vertigo attack?
     
  19. Clare

    Clare Active Member

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    In my experience, yes. The vertigo might last 6 hours, but it could take 3 days to feel mostly recovered from just one attack. My vertigo attacks usually came clustered during weeks or months of flare-up, and sometimes I couldn't get back to a stable state without the help of vestibular therapy.
     
  20. drburcon

    drburcon New Member

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    My first Meniere's episode was a drop attack... off a ladder! I am 67 and had my first shoulder surgery a month ago. The next one is in two months. Also got a concussion. I have fallen four more times since, once getting a compound thumb fracture on the opposite side of my sling. It is in a splint. Kind of tired of explaining what happened to me. No one understands. They look at me like I'm crazy.
     

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