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Neurology is scary too


#1

Neurology is scary, too. Anything related to the BRAIN is frightening. Understand MAV is the lessor of many evils. Our MRI are usually clean - meaning we don’t have brain tumors, aneurysm, stroke. Our issues can be treated and we can heal. MAV is life altering but not life ending.


#2

Interesting, I don’t find the brain scary at all, actually, because we know it is so plastic usually … a force for good, always trying to accommodate … and safe inside a thick skull & an especially sophisticated biological barrier, away from harms way :slight_smile:

But as they say, crp in, crp out … things only start to become a problem when something is not fed the right data … or worse, varying versions of the truth … and herein lies the problem I suspect.

No doubt the neurological symptoms can be scary, but I’ve never found descriptions of the brain or migraine to be scary at all.


#3

Oh, @turnitaround, sorry I’m with @flutters all the way on this one. Ears, despite their potential for trouble, never bothered me, but the Brain. I swallows real hard when the neuro-otologist said ‘we’ll just have an MRI of your head done, just so I can have a closer look at your brainstem’. Gulp! Dont remember anything about any comfort being provided by temembering how much plasticity my brain was capable of. Not a bit of it and the wait for the results. The longest week of my life, and it wasnt even a week really in reality.

We on the same planet? Googling ‘dizziness’ I think, this is years back now, and up pops brain tumour and all manner of nasties. Brain is scary. Migraine, no. Helen


#4

Ah got you … yeah I guess that did worry me a little bit at the time … acoustic neuromas are extremely unpleasant and tricky … but also very rare … and once the tumour thing is ruled out (very straightforward, wish it was all that easy) … plain sailing, relatively speaking, no?

Sounds like they didn’t do a very good job of managing your expectations there, Helen - ie extremely unlikely you have a tumour!

Yes I respect the fact that if you have one, prognosis is pretty tricky, but no need to dwell on that.

Slightly amended the tip accordingly :wink:


#5

Have you watched that movie “Brain on Fire”? Conditions like that are what you starting thinking could be wrong.

Neurological aside, there is also the worry that you are suffering mental illnesses not unlike many of your relatives…


#6

Are you serious?! Really? Clearly you’ve never had the pleasure of a week long basilar aura. Then chronic neuropathy, aphasia, visual snow, autonomic issues that handicap your life (like the insane IBS MAV brought with it). Vestibular issues are horrible. My ears are so secondary as to be an afterthought even with vestibular paroxysmia, hearing loss and tinnitus. My brainstem is, on the other hand, a messed up, terrifying time bomb. I’ve been living in a mask 24/7 this summer because last year’s fire season took MAV from annoyance to severe basilar migraine to the ER to chronic, acute MAV. That had exactly nothing to do with my ears.


#7

I think you’ve missed the point completely.

My OP is about looking up health conditions on Google, particularly ear conditions like Menieres and getting scared that you have them. Absolutely nothing to do with concerns about conditions you do know you have.

With respect this site is about vestibular conditions and the point was aimed at those, not other health conditions.

Great so this tip has nothing to do with you, because you don’t believe your ears are involved. Doesn’t change the fact that there are plenty of MAV sufferers who look up ear conditions on Google and get frightened?


#8

Migraine-Associated-Vertigo are the search terms.

With all due respect, I did not miss the point.


#9

You have missed the point.

The search terms are at the discretion of the sufferer, what has this got to do with your personal search terms?!


#10

I give up. You’ve got a theory that works for you but not others. I’m not getting into this argument again.


#11

What has this got to do with your theory or mine?! It also has nothing to do with your particular circumstances. It’s general advice about controlling Health Anxiety by not using the internet when you are vulnerable.

If you’d care to do a search on this very forum you will see evidence that many members have expressed anxiety when looking up possible conditions that they might have. Many of them are aware that they probably should hold back but of course everyone wants to know more and are understandably searching for answers.

The academic papers go into incredible detail about what can go wrong etc. and that can make people feel rubbish even when it is totally irrelevant to them.

Possible diagnoses for chronic dizziness include at least:

  • MAV
  • PLF
  • Meniere’s
  • Secondary Hydrops
  • Acoustic Neuroma
  • Superior Canal Dehiscence

etc. etc.

Who is not going to start looking those up when they get dizzy?

Emily, I really don’t get what you are saying?


#12

I totally agree with the tip to put Mr. Google Down, I like it. No beef on OP. I thought we were discussing this comment now though


#13

I respect people have other health conditions, but they are out of scope of my advice, happy to caveat that.


#14

Think your initial point is fair James.
I’m one of those who does exactly that and worry myself silly. Thanks for today


#15

Thank you Jess.

I did exactly the same when I first got ill and it’s a pattern we see over and over with board members.

Whether you believe MAV is entirely a brain illness or a combination of brain and ear is irrelevant to my OP.

If you have dizziness you will search for all causes of that on the internet.

Of course you won’t restrict yourself artificially.

If you are unfortunate to have a doctor you don’t trust (that may not be their fault) you might even do this after your first diagnosis, it’s only natural, but possibly an own goal, especially when you are very symptomatic and things seem very unfamiliar & scary.


#16

James, I don’t think many people share this opinion. If migraine is the perpetuator of dizziness then Brain brings in Multiple sclerosis, Stroke and many other dangerous alernatives.Comments which discount the brain can trigger people especially when they know they suffer from a brain issue.

I know so many folks with perfect hearing and aced all ear tests who still have MAV. For them Brain is the source of all problems.

Dr.S today told a patient “Betahistine works for you, you don’t have MAV”. He does not think MAV is hydrops.


#17

I’m not arguing that here … it’s irrelevant to the OP.


#18

you asked what triggered folks…i pointed out what did


#19

OK thanks


#20

Do you know come to think abt it nobody ever has. Any medics I encounter dont say alot (and its not cos they cant get a word in edgeways, I’m quiet waiting to listen. Dont pay to hear the sound of my own voice, ever) but just come out with it as it is. No they always are brutually frank. Only last yr the GP looked up from examining a lesion on my skin and his opening wirds were ‘well, I dont think its breast cancer, its more likely to be skin cancer”. Big Gulp, yet again. He sounded more like he was in a lecturing theatre addressing students whilst watching a overhead slide projection I thought at the time. Maybe it’s just me, Helen