When I was first diagnosed with bilateral Ménière’s disease by my doctor at Duke he told me two things that will always stick with me, “Ménière’s is one of the worst disease you can have that won’t kill you.” and its “a disease of random punishment.” He compared Ménière’s attacks to living in a war zone, you know that you will be under fire at some point you just don’t know when.
Having a disease that makes you feel as if you could be attacked at any moment causes a lot of psychological distress. A study conducted by Dr Kirby and Professor Yardley at the University of South Hampton found that those with Ménière’s Disease have a much higher incidence of post traumatic stress syndrome (PTSD), health anxiety and intolerance of uncertainty to distress than non-sufferers.
Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. The high levels found in Ménière’s sufferers are comparable with those found among people who have suffered a stroke, heart attack or heart surgery.
I’ve been diagnosed with PTSD. I’ve known this for a while but it has never been as apparent as it has been the past month. For the past month I’ve had very little vertigo. The vertigo I have had has been minor and only lasted for a very short period of time. Most days I’ve been vertigo free, but I haven’t been able to enjoy these days. I am constantly expecting an attack at any moment. I’m on edge, jumpy, irritable, anxious, argumentative…. I try so hard to enjoy the good days I have and put the bad days in the past, but that doesn’t seem to be working recently. I have been taking advantage of this good spell a little but I’m on guard all the time, waiting for the ax to fall. Waiting for that next vertigo attack. Sometimes I deal with this much better than other times. Right now, I’m a nervous wreck.
I found a test on line that ask many of the same questions my doctor asked me to get my diagnosis. If you feel you might have PTSD you might want to take this test and then take your findings to your doctor to discuss it. PTSD Test
additional reading and helpful sites:
Picnic with Ants 
Have you ruled out tmj by a dentist who has taken advanced education training in tmj?
I know I’ve asked this before and only push because finding out tmj was causing my symptoms was a huge shock since I had no signs ever in my life of tmj or jaw issues.
Treating it as well as the issues that go along like spasmed upper body muscles and body and neck alignment has been life changing!
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Have you ruled out tmj by a dentist who has taken advanced education training in tmj?
I know I’ve asked this before and only push because finding out tmj was causing my symptoms was a huge shock since I had no signs ever in my life of tmj or jaw issues.
Treating it as well as the issues that go along like spasmed upper body muscles and body and neck alignment has been life changing!
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jarafeinblatt, I have been checked out for TMJ by someone who is supposed to have had advanced education in it. And my migraine specialist, who sees a lot of TMJ problems checked me out. If I find someone else I might trust to do so, I will have them test for it again, just to be sure.
With degenerative discs in my neck I can’t have chiropractic adjustments. I’m not sure if that is what you meant in the last sentence.
How do they treat the TMJ?
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It’s amazing how everything is connected I’m learning! Neck pain, should pain, ear stuffiness, head pressure, dizziness, tinnitus, hearing loss, I can go on! My jaw is compressed against my ear. For that I work with an ortho who has made me a custom repositioning splint that gets adjusted frequently to move my jaw to a stable position. From years of (unknowingly) not treating the jaw, my upper back, shoulders and muscles around my tmj are spasmed and working so inefficiently that it’s like causing inflammation. So I work with gentle chiro, physical therapy and massage therapy to loosen, align and re-teach those muscles how to work properly again now that my jaw is stabilized (or on its way to be). There could also be fluid trapped in my ear due to the jaw compression which could be causing hearing distortions and loss. So I just had a MRI specifically of teh tmj. But as you mention, finding the properly eduacted dentist or ortho who can daognose and treat is imperative. My regular dentist missed this for years. And ENTs don’t understand the correlation of jaw and war symptoms.
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Many drs don’t seem to think one part of the body is connected to another. So silly. But my migraine specialist isn’t like that, she gave me a thorough exam including my jaw. She was specifically checking my TMJ.
I think I’ve been checked out well for it. I will ask her again when I go back how thorough her exam is.
Even if I found I had TMJ issues I would still be on the lookout for more vertigo. I’d still be afraid it would all come back. Living with this for so long has shown me to never think it couldn’t happen right now! That’s scary. I used to never think about that, but recently the fear has taken over. I’m going through a great spell and I can’t enjoy it.
Thanks for all the info.
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Well, I still apparently have low level PTSD from being captured off the street walking home and gang raped back in 1968. Not surprising, I suppose. Life is definitely not always a bowl of cherries. (Personally, I don’t like cherries–LOL!)
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Damn Rita, you have been through a lot!! You should write a book. (I’m sure you’ve been told that before)
My PTSD is from more than Meniere’s. I was also raped, mine was date rape. I can’t imagine the horrors you went through. I’m so sorry that happened to you.
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Great post! So much information, I have been rules out for Ménière’s disease, I think the problem with my chronic pain is that it is mostly genetic. I have had so many tests, been poked and proded, as they say…and nothing changes.
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I hate to say I can relate to this because anxiety sucks. I’ve been clinically depressed for a couple of decades but finally have a good doctor and good meds. The anxiety is 100% disease specific. It was really hard to diagnose too. My psychologist asked a lot of great questions about the panic attacks. Because it happened in crowds, at first they thought it was a phobia. When I explained it wasn’t being in a crowd of people but specifically being jostled by people… it helped us zero in on what was really going on. I currently do not take anything for the anxiety (I am trying relaxation techniques which are only mildly helpful). So many medications increase dizziness and feelings of vertigo. Ugh. This post is terrific! Thanks, as always, for sharing your experiences.
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I still find it hard, nine years later, to really grasp my reality now (disability, neuropathy, inflammation, migraines, depression and anxiety). I keep cocooning in my writing, art, pets, to hold onto sanity. I’m sorry for you, everyone, who has chronic poor health, life is already difficult.
Love + hugs Wendy 🐻 💜 🍓
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I like the way your doctor worded it because your doctor sounds like a real human being and not “a doctor”. I feel like Lyme Disease is one of those too, and again, not one that is easily called to mind or well known by the general populace. Yuck.
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My doctor seemed like a real human being when I first started seeing him, when it got to the point he couldn’t do anything he seemed much more like a doctor. One that just kind of gave up. It was years later, maybe he got jaded. I don’t know, but it was disheartening. I am grateful he was able to tell me he couldn’t do anything else though.
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