The Vestibular Migraine Community

Great presentation on Vestibular disorders!


#1

“You look so good but you feel so unwell”

Discusses amongst a lot of other things, how its NORMAL to be anxious and how anxiety and nausea are triggered by a mismatch in the balance system AND how we get over dependent on the visual system (stiff neck anyone?) if the brain decides it can’t rely on the balance system. Also discusses Dizziness related Depression.

He says ITS VERY IMPORTANT TO KEEP ACTIVE.


Warped world and interesting thoughts
#2

Thanks a lot for posting this presentation!


#3

Pleasure Irina


#4

This talk gives me some hope that this codition may improve. I’ve read lots of posts on this forum and it is so sad to know that so many people have to live with this condition and doctors just ping pong you between different specialists including psychiatrists untill you really start believing it is in your head. Hope you are feeling better!
I am acually a freelance interior architect/designer who is struggling to use the computer so the condition prohibits practising any profession really.


#5

Irina there is hope but it’s a long road potentially.

I’m off medication and improving by the month. I can use the computer for as long as I like now. I’m still suffering imbalance, persistent fluctuating tinnitus, occasional mild vertigo when lying down and uncomfortable walking in tight spaces but lead a pretty normal life now. I no longer get migraines, anxiety, dizziness, swaying, push-pull, rocking, sound vibration or nausea. :slight_smile:

It’s taken me over 2 years of chronic symptoms to get here.

For what it’s worth Amitriptyline helped me get back on the computer. Are you on medication?

Keep the faith and talk to us when you need to.


#6

Thanks for the support!
I was about to write a post but don’t even know where to begin as symptoms keep changing!
In February last year I started waking up with palpitations, shaking and high blood pressure, was taken to hospital once. They lowered blood pressure with a drip, did holter, echo of the heart and send me home with different blood pressure medication. Since then I gradually started developing all sorts of symptoms, balance problem, etc. Was put on all sorts of blood pressure meds and they all made me feel worse one after another! Had to do most of the tests privately as it was unbearable! 2 CT scans were normal, MRI, MRA found aneurysm (doctors said it is not the cause of my symptoms), kept sending me to do yoga and meditation for anxiety! But my main problem is that any motion increase the symptoms and even light Tai-chi is a problem when I turn or bend. Still undiagnosed! ENT did audiogram and pressure test and said it is ok. All is in your head, overcome fear. Untill now I am sill overcoming., Just now was sitting without any movement and it was a bit better, when lying the head becoms heavy and swim, internal vibratuons at night, getting upstairs on the 5th floor makes the sensations worse, even the heart is skipping beats and blood pressure still fluctuate a lot, clicking noise in the ears, eyesight out of focus in the supermarket, What is it blood circulation problem, high blood pressure or as Dr S. suggests balance disorder. No medication as I don’t know whome to trust anymore.


#7

Get your GP to help you try Amitriptyline. Start slow at 10mg and raise 10mg a month until you have no problems on computer. Do it. You will get your sanity back. Side effects are for most people minimal.


#8

Dr S prescribed pregagalin and pizotifen as an option. Never tried yet. I was blaming the medication I was taken for my simptoms but dropped them all in May. Since the morning I woke up the head is heavy, then all slowly moves down, clicking noise in the ears, physical exercise or walking make the symptoms worse, did not have spinning as such, but sensation of spiraling in MRI machine, but a lot of swaying, when turn in bed sometimes as everything moves in my head or falling but only after about 5 min after turning the head. Does it sound like Balance disorder? I don’t think I have good or bad days it is more episods not days as such.
I live in London but flew to Riga to get diagnosed and still no answer. Thank you for suggestion!


#9

I saw four doctors before I was satisfied. I was ‘lucky’ in that I had an obvious ear injury. I have a fistula but all my symptoms are same as ‘MAV’ except I also get fluid in my middle ear.

Yes yours could easily be a balance disorder. Amitriptyline is used across many balance disorders.

I’m also in London. Can PM you my doctor if interested.


#10

Thanks a lot! My email is irina2206@inbox.lv


#11

As I’ve noted before, I like coming on here because we unite and help each other.
James, thanks for posting this. I sent the cliffnotes to my family of what you said and attached the presentation if they wanted to view it.


#12

Thank you for posting this! I’ve watched the first half so far. I love his Canadian accent!


#13

I skimmed through this video. I love the ending “Diagnosis can be therapeutic”(Ha Ha…if only all of us got a pinpointed diagnosis). Another key takeway being active you cannot cause more damage to your balance system.


#14

One more presentation on bilateral loss from Dr.Hain. Talks about advances in vestibular research as well as some of the common tests used


#15

Hi, there is an interesting post from the dizzy doctor!

https://www.healthboards.com/boards/dizziness-vertigo/966943-story-doctor-turned-dizzy-patient.html


#16

Wow. A doctor wrote this?!:

"What I have learned: As many of you have or will learn, unfortunately medical technology has little to nothing to offer patients with vestibular disorders. Even the supposed experts have very little understanding of vestibular disorders and will have little to offer other than reassurance that things will get better. "

Aside from the crazy meds I would agree. They have not been able to offer a medication that definitively addresses the root cause of my issue (hydrops). I’ve only been assured it “should improve with time” ie of its own accord.

Luckily, so far, that has largely been true. And long may it continue …


#17

Wow, easy for that doctor to say. Yeah, sure, if I would have known in the beginning of my symptoms that all the tests would be normal, to reduce anxiety (like it’s that easy while experiencing vertigo and dizziness! and he phrased it like anxiety is a switch one can just turn off), and that if I felt dizzier doing something to keep doing it every day, then yeah I may not be as bad off as I am now. But also, this doctor hardly had any symptoms to contend with. In the medical community it frustrates me that most doctors have no idea what it’s like to “live” with this condition. Here’s a doctor that finally got it, but it wasn’t too bad. So this doctor is just going to tell other doctors that it’ll just “get better with time.” This was a frustrating read for me, in case no one can tell! :wink: