My daughter in law started an entry and I’d like some input.
She’s been experiencing some severe pain in her head - but mostly inside of her ear though there is nothing remarkable upon examination.
There’s been some dizziness and several attempts with pain meds and migraine meds have yielded little to no results.
The pain is remitting/recurring - sometimes liveable, sometimes bad enough to plaster her to her bed.
I am starting to think along the lines of mastoiditis or something though I’ve not yet asked if she’s experiencing pain behind the ear in that bony region.
i responded to her thread it sounds like perhaps a pulsating tinnitus to me but I am not a doctor nor do I play one on TV . I am sure the anxiety that comes along with this could be causing additional issues…it does for me.
I agree, it might not even be migraine. The symptoms are fairly vague so I’d caution against looking for a diagnosis here - for a few reasons.
Other than Lisa (MAVNY) we’re not doctors and even so, diagnosing over the internet is not good medical practice
Migraine has a large range of symptoms, many of which are vague (or specific) enough to be common to any number of conditions
MAV is a relatively new diagnosis and as such risks “over diagnosis” as we’ve seen with RSI, CFS, autism and in the more distant past with conditions which no longer “exist” eg hysteria.
For very good reasons most doctors hate their patients trawling the internet looking for answers, before a diagnosis. You can freak yourself out with what you think you might have or you can convince yourself you have something. In my own case it took years to get a diagnosis of MAV for those very reasons - LOTS of other things had to be investigated and eliminated.
I hope that doesn’t sound too preachy - it’s not meant to. It would just be a shame to start following a path of MAV if that isn’t what your daughter in law has.
VERY well-stated. My best advice would be for each patient to start by SEEING a medical professional and to use the internet (and wonderful support forums such as ours) for support and possibly spark questions to ask our doctors.
VERY well-stated. My best advice would be for each patient to start by SEEING a medical professional and to use the internet (and wonderful support forums such as ours) for support and possibly spark questions to ask our doctors.
Lisa (MAVNY)
— End quote
That is what I do, I search the internet for both support from people with similar conditions to mine so that I can talk to people who understand. I also research, not to self diagnose, but to learn what questions to ask my doc.
I show symptoms of two, possibly three conditions sometimes docs can get stuck in a one mode of thinking, or go along the wrong direction. The ENT I see locally, will diagnose anything looking similar to meniere’s as meniere’s and there are no other conditions that can produce meniere’s like symptoms. He even told me last week that Dr. Haine is nothing but a headache specialist and has no knowledge of inner ear conditions. I’ve been in Dr Haine’s office and he deals with anything and everything that can cause problems with balance and dizziness. Without researching on the internet, I would have never questioned the local ENT and he would have ripped my inner ear out five years ago, and I would be deaf in that ear with symptoms in my other ear, not hearing very well at all, and not being able to commincate with my blind wife very well.
I have one specialist who says that I don’t have any inner ear problems, one that says that it is only inner ear, another that says that it is only migraine, and a fourth that says it is both. None of them can say why I fall so often. Doctors are human too, and can get themselves stuck on a one track mode of thought. I work in research and development department of the company I work for and it is often that engineers will get stuck in a one track train of thought. In this field, when management spots this, it is not uncommon to bring in other engineers from other departments to break that engineers one track train of thought. In our situation to my analogy, we are the management, (it is our health and our bodies after all) the docs are the engineers, and it is up to us to decide when we need a second or third opinion.
My point, is to simply back up Lisa, don’t diagnose from info on the internet, especially forums, but instead, learn what you can and try to ask the docs the right questions.
Not looking for diagnosis. I was curious because they’re treating for migraine and given the complete absence of any of the signs (except for pain on that one side) and the fact that none of the meds have worked, why they might be treating her for migraine. Then again, military doctors.
I’ve often found, over the years of raising kids and doctors too rushed to really ‘deal’ with us, it helps to have something in hand to say, “Look - these are my symptoms and I’m being treated for migraine. Is it possible that ___________? Should we, perhaps look here, instead?”
As has been stated, sometimes dr’s get stuck on one thing and won’t let loose until the patient shakes 'em up a bit.
