The Vestibular Migraine Community

New member: What's wrong with me?


#1

Hello, everyone! This is my first post and I’m hoping that some of you experts may be able to give me some insight as to what is going on. This is going to be long!

First of all, a poster named GetBetter suggested some definitions in another thread. I’ve added another definition of my own. So in my posts, here are the definitions of the terms I may be using:

  • dizziness = light headed and feeling like you might faint. kind of like pre-syncope
  • vertigo = spinning sensation like you are on a merry-go-round
  • violent vertigo = sensation of tumbling end-over-end; impossible to stand; even when holding on to something it feels like you (plus what you are holding) are tumbling head-over-heels through the air
  • imbalance = walking on foam/trampoline and feeling like tilting or pulling

OK, here goes. I’m female, now age 56. I started having episodes of vertigo around 1995. They were short, lasting a minute or two, I think. Afterward I would still feel “off,” more of an imbalanced-feeling, for several hours. It didn’t happen often, maybe once every few weeks.

I first went to an ENT but don’t remember much about what he told me. The episodes continued. Back then was when information was first starting to be available on the Internet. I had a computer and I think I was able to find a little bit of information about Meniere’s Disease. That led me to a university teaching hospital in the city where I lived. They had a specialist who was a neurotologist, so I made an appointment with him.

At the university medical center, I got all of the tests. The ENG, the rotating chair, and the tilting platform are the ones I remember. After all of those tests, he told me that most likely I had “vestibular neuronitis.” He said that I definitely did NOT have Meniere’s. I am pretty sure that he told me that the tests had shown that the balance system in one of my ears (can’t remember which one) was weaker than the other ear. His recommendation was to take Antivert (meclizine) when needed.

By then I had done some more reading and had found that a low-sodium diet had been found to help Meniere’s patients. I asked him whether it might help me, too. He was doubtful but said that it couldn’t hurt. He said the recommendation for Meniere’s was to keep the sodium intake below about 1500 mg/day.

Over the next 20 years, I did my best to maintain a moderate sodium intake. I continued to have short episodes of vertigo several times per year. I couldn’t ever figure out a trigger for them but it did seem like sometimes they would happen after I had traveled somewhere by airplane. At first I thought maybe the flying had something to do with it, but finally one day I realized that when I traveled I usually had to eat a lot of salty restaurant food instead of my own cooking. So then I thought that maybe my efforts at trying to maintain a low sodium intake were doing some good.

What always scared me about my episodes was that they came on suddenly, with absolutely no warning.

A couple of times when I had episodes that were fairly close together, I called the university specialist and he put me on prednisone for a week or so, saying that it sometimes helped “calm down” the vestibular system.

As more and more medical information became available on the Internet, I would periodically look for new information on vestibular disorders. I started to suspect that “vestibular neuronitis” was sort of a catch-all diagnosis, the one they gave when they couldn’t figure out what was really wrong.

In more recent years, while I still only had a few episodes a year, the vertigo was becoming much more violent. They still came on suddenly, with no warning, but I started to notice that some of them seemed to be triggered by a visual stimulus. For example, a few of them happened while I was using a computer. It seemed like when I moved my eyes from one place to another on the computer screen was when it happened. Another time it seemed to have something to do with my field of vision suddenly changing (I was a passenger in a car and it happened as we turned a corner and my gaze shifted).

When I say “violent,” I mean violent. Sudden and intense and something that you wouldn’t be able to endure for more than a period of seconds. One time I was seated at my computer when all of a sudden everything seemed to be scrambled and tumbling. I grabbed onto my desk, leaned forward, and I think I closed my eyes, but it felt like I was falling and the desk that I was holding onto was falling with me.

A similar thing happened another time when I was using the computer at a stand-up desk. When everything started tumbling, I grabbed the table but ended up falling onto the floor anyway, as it felt like the table was falling, too (it wasn’t).

I live in a different city than where I lived when I went through all of the testing. There is a clinic here that specializes in vestibular disorders, so I made an appointment. At the first visit, I gave the doctor a copy of all of the test results from 20 years ago and told the doctor that I had been diagnosed with vestibular neuronitis. He looked a little surprised and said, “for how long did you say you’ve had this?” I said, “Twenty years.” He told me that vestibular neuronitis was something that generally resolved itself within about six months. He then looked at the previous test results and told me that they didn’t really show a weakness in one of my ears.

He went on to say that since I went through my initial testing, a new disorder, “vestibular migraine,” had been discovered. He asked me if I ever had headaches. Well, yes, I did get headaches on a regular basis and had for years. But they never happened with the vertigo. (I’d get a headache maybe once every two months, and it would usually last about three days. For years I had thought that they were sinus headaches, because the pain would usually be on one side of my head, just above and behind one eye, and I would get stuffed-up sinuses especially on whichever side the pain was on. I even tried to take decongestants along with ibuprofen, thinking that would help, but it never did any good.)

He suggested that I go through a bunch of the tests again to see whether there might be wrong with my vestibular system.

So I went through some of the same tests and some different ones, too. I had an MRI, which came back clean. They did a type of ENG, plus the test on the tilting platform, plus another one that I can’t remember at the moment. The tests are all much higher-tech today than they were in 1995.

After all of the testing, I went in for the appointment where they were going to go over all of the results, and, I hoped, provide me with a definitive diagnosis and treatment. I took my husband with me to that appointment.

The doctor went over everything and told us that all of my tests came back normal, which meant there was nothing wrong with my vestibular system. He then said, in sort of a dismissive voice, “so it’s probably vestibular migraine.” He acted like he had totally lost interest, since he hadn’t been able to find anything wrong with my vestibular system.

I said, “So, what am I supposed to do about it?” He told me to just take Antivert as needed when I had episodes. In other words, THE EXACT SAME THING I WAS TOLD 20 YEARS AGO.

Before that appointment, I had read up on vestibular migraine. It sounded a lot like it might be the new “catch-all” diagnosis when they can’t find anything else. Plus, it seemed too vague – it could manifest itself as dizziness, or vertigo, and might happen with a headache, or maybe never with a headache, and maybe with a visual disturbance, or maybe never with a visual disturbance, and so on.

I was very discouraged. These episodes are scary, and if I happen to be standing up when I have one, I am going to fall. I now have osteoporosis and a fall most likely will result in some sort of fracture.

The next time I saw my primary care doctor, I told her about going to the specialist and going through all of the testing. I told her that his diagnosis was vestibular migraine. The first words out of her mouth were, “Vestibular migraine? What’s that? I’ve never heard of that.” Sigh.

So here I am. I’m wondering whether anyone else has had super-violent episodes of vertigo, like I’ve had. And whether anyone else has had them without being associated with a headache at all. Whether it really is “vestibular migraine” or something else. And of course I’m interested in any ideas for how to prevent the episodes from occurring.

Thanks for listening, everyone!


#2

Bang on I’m afraid. If it sounds too nebulous to be true it probably isn’t (true)

I suspect chronic vertigo sufferers fall into only two camps as the anatomy is the same for everyone:

  • Menieres (hearing loss during attacks and chronic low frequency hearing loss). Rare.
  • Secondary Hydrops (SEH) (aka imho MAV/VM - there is emerging science to prove they are the same). Tinnitus and if any, mild HF hearing loss. This one is very common.

Both can give you crazy neurological impacts including visual hallucinations and migraine (brain fog, motion intolerance the whole enchilada ) and weird pushing and pulling sensations.

The latter can be caused by Perilymph Fistula but the jury is out on how best to treat them: probably conservatively.

Who knows what causes Menieres but from my observation Menieres initially seems to impact the Apex of the cochlear, whereas SEH seems to affect the Basal end. The latter might easily be explained by chronic recurrent pressure drop of Perilymph. Fistulas are relatively easy to get from injury and trauma because the inner ear windows are some of the thinnest membranes in the body. Indeed the oval window is touched by the middle ear bones which can easily transfer pressure from the ear drum and can over extend. They are probably criminally under diagnosed at the moment due to dogma and politics but also because of a lack of a conservative test.

I suspect BPPV is simply perilymph leakage due to a level of SEH or a small fistula. I don’t buy the BS crystal story which to my knowledge is simply a poor if popular hypothesis and has never been imaged. Head pressure brings on leakage and the level of head pressure changes with position. Hence the leak is positional. The Epley manoeuvre is probably violently causing a large acute leak which stops the vertigo as this instantly reduces the pressure that was driving the leak (unfortunately reducing perilymph pressure is NOT a good idea, and maybe why a lot of BPPV sufferers go on to develop SEH/MAV). My advice would be don’t get the Epley done until we have more science.

You are best to experiment on what makes you feel better. Absolutely try the MAV treatment regime inc. diet. I also use a stack of pillows to take pressure off head at night. This reduces episodes of vertigo and I hope helps heal the fistula I have. Limit the amount you bend down and cough. Don’t hold in sneezes and avoid use of headphones and loud noise if possible and do a lot of walking!

I have loads of sympathy, this condition is frustrating, confusing and extremely trying.

Good luck and keep us posted!


#3

Hi
over the last 15 years ive been told I have
BBPV
Vestibular Nuronitus
Reoccurring ear infections
Mileries Disease
and non of it was actually true.
I do have MAV with a strong hormonal link that as I get older is getting worse ( I’m 45 nearly).
It took me 8 years to get a diagnosis and ive spent another 7 trying various drugs / therapy’s to get it under control. Nothing has worked .Im trying the mini pill in December .
I rarely get a “headache” just violent vertigo episodes that I wake up with. Fullness in the ears and sensitivity to noise . Its very bad at times when I cant seem to work out which way is up ( do you know what I mean ? )
You can have MAV without the headache. There’s loads of different types of migraine .
Mine has been explained to me that my hormones fluctuate , that causes migraine, chemicals your brain releases during the migraine attack ,attack your balance mechanism( back of the brain) and cause the vertigo. In normal migraine you get visual disturbance(front of the brain) so this makes sense to me
I live in hope that the hormones will stop the problem.
I would recommend you see a neurologist or a nuro otologist to at least try different meds for your migraine.
A lot of people have had a lot of success with various drugs on this forum.
Good luck with your journey x


#4

turnitaround, Thank you so much! You’ve given me a lot to research and consider.

Where can I find the latest MAV diet and treatment regime? Is it in the “Vestibular Migraine Survival Guide 2014” thread, or is there a more recent version somewhere else?


#5

I’ll link the two diets to consider here:

  1. migraine diet (not strictly VM but might be helpful, maybe over restrictive to be practical?)
    http://www.mvertigo.org/uploads/default/optimized/1X/2a95b4eda4599573b23481bc08564d06ebfd7369_1_375x500.JPG

  2. Dr S’s 6 C’s diet

Meds protocol here (go to flowchart at bottom), but you really ought to talk to an oto-neurologist before considering prophylaxis.

https://www.dizziness-and-balance.com/disorders/central/migraine/mav.html


#6

sarahat, thank you! Why do you think that your MAV is hormone-related? Is there some sort of test that told you that, or are you going more off experience and observation of the timing of your symptoms?

I’m post-menopause so I’m not sure how much hormones would come into play for me at this point.


#7

Also read this:


#8

Ahh, thank you. Many years ago I was on an email discussion list (remember those?) called “Dizzinews.” Some of the participants had been to see Dr. Hain.

I found a few more “diets” on his site:

Hydrops Diet

Migraine Diet

Meniere’s Diet


#9

Dr Hain is a good man. Wonderful website.

Well finding the right diet is the million dollar question. The goal is simple: stop the vertigo and reduce other symptoms.

The key difference between the meniere’s/hydrops diet and the MAV diet seems to be salt restriction. In the latter it’s not restricted.

The MAV diet seems to restrict potassium instead. That is very interesting. Given Endolymh is predominantly Potassium based I wonder if this diet is close to a cure?


#10

Hi
There’s a lot of things that make me think hormones are to blame :0)
When I was young I developed migraine in my teens which was the " normal" kind .Quite severe numbness down one side, extreme pain, blindness flashing lights the lot ! This cleared up totally when I was pregnant .
For the next 8 years I was migraine free , when I tuned 30 this version started .
(Ive been told that your hormones shift about every 10 years ) was getting attacks every 3 months or so at this time…
Skip forward to 40 …was getting it every 36-38 days ( not at the same time as periods).
Last 6 months more often - periods gone all over the place , long ones then nothing for 8 weeks …then two in a month etc …vertigo attacks out of control ;0(
I know your post menopause but sometimes the lack of hormones can be just as bad , someone on here had very low progesterone and that was causing problems.
The nature of your headaches ( every two months) sounds like ovulation may have played a part at the time ( we only ovulate 6 times a year past 35)
My mum has BBPV which can play her up first thing on getting up in the morning…does this fit with you?
Some episodes have been very very violent and she’s ended up in A&E with injected Stemitil to calm it down :0(
Read up on BBPV see if its fits?
I wish you all the very best with this debilitating condition …
X


#11

In which link do you see that the MAV diet restricts potassium? I’m not seeing that on any of Dr. Hain’s pages.

And @turnitaround, your theory about secondary hydrops is interesting and I’m now reading about hydrops, as I wasn’t familiar with it. Thank you for all of your comments and information!


#12

Hi, @sarahat, that is very interesting. I hadn’t thought much about hormones, as I hadn’t connected the headaches to anything and had never connected them to the “dizzy” attacks. Thank you for your comments and I’ll keep that in mind as I do more research!


#13

So, everyone, it’s a strange coincidence so soon after my first post, but yesterday I had a bad vertigo attack.

By “bad” I mean a very sudden, violent episode. It only lasted a matter of seconds.

My husband and I had gone out for a walk and were almost home. He said something and apparently I turned my head suddenly to look at whatever he was talking about. Suddenly everything in my vision was “tumbling” (I wish I could think of a better description) and I grabbed onto him. I lost my balance and fell downward, with my knees buckling under me, and actually dragged him down with me.

He, of course, was totally taken by surprise as he had no idea at first what was going on. I think it’s only the second time he’s been around when I had one of the bad episodes like this one.

We both sat on the ground for a couple of minutes and then walked home, with me holding onto him. For the rest of the evening, as well as most of today, I felt imbalanced any time I turned my head too quickly to one side or the other.

This is just bizarre and I wish I knew what the problem was. It just seems like a lot of guessing.


#14

If you dig deeper you find every one of the 6C’s is particularly high in Potassium.

The penny truly dropped for me when my surgeon told me that some people with Secondary Hydrops find their symptoms exacerbated by red wine, aged cheese or chocolate. I was like “Wait a minute, that’s the MAV diet …”


#15

Sorry to be dense, but what are the 6C’s?


#16

Chocolate, Chianti (all red wine), Cheese (Dairy), Coffee, Chinese & Citrus as per the linked document. There are the things to avoid or reduce as much as possible.


#17

Hi
Manatee
What u described sounds very much like my Mum and her BBPV …do u sometimes get it on getting out of bed ?
As my Mum lives on her own ive got her a call button system so she can get help :expressionless:
Saying that …James and the Hydrops thing is really interesting :blush:
Sarah


#18

No, never. I’ve been tested for BPPV and they said I don’t have it. My hearing is perfect and none of the tests showed any sort of vestibular weakness.


#19

Turning your neck can increase head pressure. This could provoke a leak which might be felt as vertigo. Pressure in the ear might be raised. Have you had that tested?Just a thought.


#20

Which test would that be? I just pulled out my files and here are the tests I’ve had:

  • Audiological Analysis
  • OAE (Evoked Otoacoustic Emissions)
  • BAER (Brainstem Auditory Evoked Response)
  • ECoG (Electrocochleography)
  • CDP (Computerized Dynamic Posturography)
  • VEMP (Vestibular-Evoked Myogenic Potentials)
  • V/ENG (Video/Electronystagmography) which included the Dix-Hallpike Maneuver and other positional head testing
  • MRI of the brain, with and without contrast