The Vestibular Migraine Community

Vestibular Migraine hades


#1

I have trouble talking about this so I’m hoping anonymity will help.

About 2 or 2.5 years ago I had my fist “attack.” My PCP referred me to an ENT who diagnosed me with Meniere’s disease. Over the next month or two the frequency of attacks increased until I was in a continual state of extreme vertigo. I could not walk, frequently became very confused, my vision was severely impacted and I vomited repeatedly every day. Heck, I could hardly crawl.

After many tests MRIs and on and on we ruled out everything except Vestibular migraines. I live in a sparsely populated state where medical care is not on the bleeding edge. So, my wife and I flew to Phoenix where a neurologist suggested VM as the reason and further suggested a course of treatment.

I did say that I live in a state with a lower number of up-dste specialists. The Phoenix doctor would not treat me due to distance and my local neurologist thought a VM meant a migraine so he unsuccessfully tried tried the standard migraine treatments, since I have a history of periodic classic migraines. He finally insisted I travel to our state’s leading neuro-otologist who flat out told me “there is no such thing as a VM, any seasoned doctor doesn’t believe they exist.” After this expert failed to find anything I very literally begged him to instruct my local neurologist to follow the protocol from Phoenix.

So months after my Phoenix visit we started venlafaxine (effexor). What a difference even 37.5 mg made. It was amazing. I walked 4 days later for the first time in a year!!!

I am not cured. The undercurrent of the problem is ever-present even with medication alterations.

Even now I have daily breakthroughs and every week or two I have multi-day breakthroughs kicking me back to where I was. We are still adjusting medication. I’m back at work about 1/2 time now and have hopes we’ll discover a treatment combination that will take me farther.

Unfortunately the breakthroughs are coming more often and I can only posit that I’m becoming used to the effexor. I am also a very long term chronic pain sufferer which means doctor after doctor is scared of drug interactions, as I well appreciate.

I am an unusual patient in that this all started about the age of 50. My wife and I don’t know what our future holds. For a future retirement we are very scared as this reduces my Social Security benefits and we cannot live the rest of our lives on savings and my paltry 401k. When my company eventually lets me go, who is going to hire a 1/2 time scientist?

To top it off I’ve paid for disability all the while but The Hartford denied me benefits. I’m angry. I’m hurting. I hide as many of my problems as I can. My condition severely stresses my lovely wife. I’m scared. I have never truly been scared of anything, but as I continue to decline back toward where I was, it is the most daunting situation I’ve been in.

Don’t get me wrong I’m thankful that I’ve had three months away from debilitating continual VM and I pray for more freedom. I want to work full-time. I want to be able to go see my grand kids. I want to be able to hold my wife and genuinely tell her everything will be OK.

I want to thank whoever set up this site as I just needed somewhere to vent my emotions. Today is one of my best or I wouldn’t be able to type this diatribe by this point in the day.

Thank you all for permitting me to occupy your time.


Newbie and worried about medication
#2

Wow. You’ve been through a lot! This is such a frustrating condition, and none of us seem to have exactly the same symptoms. And the treatments are all over the place - it amazes me that there is such a huge list of drugs that can be used as treatments, but it seems like it’s completely trial and error as far as finding what works for a given patient.

First I have to ask about the neuro-otologist (the one you said is your state’s leading expert) who said that there is no such thing as VM. Why did he say that? Was he an older doctor? (Twenty-two years ago I was told that I had vestibular neuronitis, but when I went through all of the testing again a couple of years ago (in a different city from the first time), the doctor told me that I most likely have vestibular migraine and the reason they didn’t tell me that 22 years ago was because it hadn’t been “discovered” yet.) I’m just curious as to whether your specialist said that because he’s not very familiar with vestibular migraine, or if he feels that some other diagnosis is more accurate.

It sounds like you don’t want to reveal what state you live in, but could you at least tell us what part of the country you are in (such as the Southeast, the Northeast, etc.)? Someone might be able to recommend a good specialist in your region.

I don’t know much about specific drug treatments, but I can point you to a few good web pages that might be of value to you. You may have already found these on your own. They’re all from Dr. Timothy Hain’s website. He’s one of the country’s top expert on vestibular disorders; he’s in Chicago.

Migraine Associated Vertigo (MAV) – and the subset called Vestibular Migraine
https://www.dizziness-and-balance.com/disorders/central/migraine/mav.html

Migraine prevention flowchart (2013 version; there are older versions on other pages of his site but this is the most recent version that I’ve seen)

Migraine headache: prevention
http://dizziness-and-balance.com/disorders/central/migraine/treatments/migraine%20prevention.html

Drug Treatment of Vertigo
https://www.dizziness-and-balance.com/treatment/drug/drugrx.html

Finally, and this question is more for my personal curiosity (and of course you don’t have to answer if you prefer not to), but I am wondering why your disability insurance was denied. From your description it sounds like it should have been a slam-dunk that you would have qualified to receive it. (I’m curious because, like you, I have been paying for a disability policy for years and I’ve always wondered if it will really pay out if I ever need it, or if they will come up with a lot of loopholes and excuses to avoid having to pay.)


#3

I think there is truth in this, in the sense that this is probably really an inner ear condition. But it does cause migraines and whole slew of neurological issues and does respond to prophylaxis (to an extent)

I hope one day the medical community stops fooling itself or tolerating parts of it fooling itself and admits this is a Hydrops condition (but one distinct from Menieres which is clearly very different)

I’m convinced MAV/VM = SEH


#4

there are quite a few drugs that you can try for MAV-related conditions. but it sounds like what you really need is to find the right Dr.

have you tried to get a phone appointment with any out of state specialists? I appreciate it is incredibly difficult to travel with this condition when it is bad. i’m in the UK but I’m sure some of our stateside members could recommend some great doctors. all you really need is somebody to read your medical history, listen to you, and be willing to try various treatment combinations until you get the right one.

be positive - there are lots of medications to try, and most people on this site do find a way of significantly improving, and even getting completely better.

right now, don’t fret about the future, and what you are going to do for retirement. think about what you can do over the next 3 to 6 months to give yourself the maximum chance of recovery, and then look at your situation again. it is easy to fall into despair, but the best way to avoid it is just to give yourself a manageable set of tasks, like “how do i get from where i am now to another 20% better” (instead of “how am i going to cope for the rest of my life”)

it’s not easy, we all have dark days, and lots of them. but remember the positives - you tried a med (the first one?) and it had a big positive impact. that is great. keep trying, under the supervision of a Dr who understands this condition, and I’m sure you will make even more progress. every 5% improvement takes you a long way forward.

good luck!


#5

I decided to answer your questions.

I live in New Mexico. The “expert” is 60ish though I won’t post his name. Why was my disability denied? I can give you my impression. The insurance company hired some neurologist whom I have never met nor spoken with. Although I had received a diagnosis in AZ at Barrow Neurological, no doctor in NM would pursue the treatment plan, yet. The hired gun Neurologist claimed my symptoms were entirely subjective and therefore I had no problems working.

I have filed an appeal. I have discovered that doctors around here don’t document very well. Very little effort was made to document the symptoms I reported. Things like my VNGs were abnormal, but no inner ear tests or MRIs were abnormal. Even though my PCP insisted on monthly visits his notes were like a series of routine exams. Same with my local neurologist. Even though I was sick and vomiting with them in the room it wasn’t even mentioned. My new PCP is not doing any better even though I keep asking for the detailed notes. Both doctors claim they have to see too many patients to keep the lights on.

I have little hope the insurance will reverse itself on appeal because of the awful documentation.

The job is precarious. If I openly show any symptoms I get sent home. You know, tell me to drive… To return to work I have to wait for an appointment with my PCP then wait for an appointment with my employer’s occupational health, then I can return. I literally miss 4 weeks of work for a one day breakthrough.

I am not depressed or anything. I just want my VMs and pain to go away.


#6

@turnitaround, they were certain they ruled out SEH.

VM is a catch all for everything that doesn’t fit into one of the other ear or brain vertigo causes. Despite popular opinions of some, there is no test that guarantees you have VM. In my case this is nothing like my fairly rare migraines that I get. My migraines are very very classic with visual auora drill bit driving into my skull over one eye. My VMs present entirely differently. Change from somewhat constant tone in my tinitus to a high frequency wave crashing, wild whirls, no balance at all vision degration/changes, but completely different from my classic migraines.

My first ‘diagnosis’ was PEH, followed by SEH, etc.

If you read the studies that separate MAV from VM, you’ll see my symptoms falling directly on the VM side. Also, there really are not many drugs for treatment of VM. People treatable by the triptans don’t have VM.

The one paper that I disagree with attempts to narrowly define a VM which leaves a bunch of people with no diagnosis – kind of like the way PEH was defined then SEH defined and they broadly stated everything else is curable. I’m a scientist, such statements show a complete disregard for science in the interest of taking credit for naming something.

Off my soapbox.


#7

Wow. That’s incredible, about the poor documentation (and their excuses for it). Probably the only thing you can do there is to explain the insurance denial to your doctor, and ask him to make sure to include ALL symptoms in his notes to give you a better chance with the insurance appeal.

It’s odd that your neurologist didn’t want to try the treatment plan that was given to you by the Phoenix doctor. You might be better off trying to find a neuro-otologist (as opposed to a neurologist). But I only see a couple of them listed in New Mexico (Bradley Pickett and Karl Horn).

I suppose another option would be someone in Denver or Dallas. I happened to run across this website earlier this evening: http://www.dallasear.com/md-brian-robert-peters-dallas-ear-institute.html

Hang in there.


#8

UI[quote=“mk1, post:6, topic:14379”]
I’m a scientist, such statements show a complete disregard for science in the interest of taking credit for naming something.
[/quote]

ENT is rife.

I’m an engineer and share the contempt.

The other big load of BS is BPPV. The explanation and dogma is ‘loose displaced crystals’ that can be ‘repositioned’. This is patently RUBBISH! How is a violent jerk movement (Epley) going to REATTACH tiny crystals to neural hairs?! Who buys such a tall story?! A complete discipline of medicine?! No way?!

My theory is BPPV is pressure induced leakage (head pressure level is positional) where resulting movement of perilymph stimulates the senses and the violent ‘cure’ acutely increases the pressure briefly via centrifugal force to effectively squeeze the extra pressure out of the ear bringing the leak to a stop. Chronic use of this manoeuvre has been reported to lead to Hydrops; Quelle Surprise!

The other red flag is the different explanations for the same thing depending on the diagnosis. Take spinning vertigo. The sensation of spinning is reported by subjects exactly the same way but:

  • for Menieres it’s due to the Reisner membrane breaching
  • for BPPV it’s due to loose crystals in the wrong place.
  • for PLF it’s due to leakage
  • for MAV/VM it’s due to a migraine or maybe migraine induced vascular event

Then when you have positional vertigo during a case of MAV they say “oh BPPV is known to accompany MAV”, you have “MAV and BPPV”. Why?!

Clearly it is very likely all spinning vertigo has significant commonality in its etiology because it is described exactly the same way by all sufferers. Yet these explanations are suspiciously different.

It stinks!!


#9

I’m an engineer, too. Engineers are problem solvers. That’s what we were taught to do in school.

Doctors have to get through med school by a lot of memorization. I’m not sure that all of them really develop problem-solving skills.

AL


#10

BPPV might have some truth to it. Lots of older people get the epley and it really fixes them. When i go for VRT i see older people for whom epley does wonders.

I also know an older person who gets vertigo and who does the epley on his own. Infact my VRT therapist can pin point exact canal with the crystal in it if you let him work your head.

Epley is stupid in an ER setting where irrespective of the cause of Vertigo they make you do the Maneuver.


#11

Then tell me how a tiny crystal can be reattached by a violent jerk. The crystals should be attached to very short hairs which are themselves connected to neurons. If a crystal is dislodged it’s not going to magically stick back on a hair by jerking the head. It makes NO sense. It’s NONSENSE!

There must be some other explanation. Pressure leak, a clot, maybe loose crystals interfering with the attached ones. But NOT loose crystals in the wrong location. . That’s fantasy.


#12

Epley maneuver is not mindless jerking of the head. There is an awful lot of science behind it. Only if you have nystagmus on the dix-hallpike maneuver which is a clear indication of positional vertigo are you said to have BPPV.

The otoconia are dislodged from their usual position within the utricle, and migrate over time into one of the semicircular canal.BPPV uses angles 45 degree to be precise which is derived from the angle of the semicircular canals to move the otoconia out of the canals.

More here from Hain’s site.
https://www.dizziness-and-balance.com/disorders/bppv/bppv.html

I would not blindly bad mouth everything about ENT because of the lack of understanding in one area “vestibular migraine”.


#13

Sorry to hear about your condition. There is hope if Effexor got you to walk. So far 3 months you have gotten as close to a normal life as possible on Effexor then there is a lot to hope for. Bear in mind even with meds you will have breakthrough symptoms, i do too.

You can either add other meds depending on what problem still remains. Most people add on Effexor if you have visual disturbances. Also you can try adding other meds from other families to compliment Effexor. The drug trials require the help of a neurologist. There is a table in the bottom of the below site for med trials
https://www.dizziness-and-balance.com/disorders/central/migraine/mav.html

Also for good measure SEH demands that you keep salt low, maintain regular schedule and hydrate yourself. Not saying you have SEH but no harm keeping salt low. You can add the migraine diet as well (6C diet) and throw in long walks for overall well being.

Live one hour at a time. Do what you can and enjoy the little things.


#14

Hain makes a better suggestion than most I’ll admit :

“The maneuvers, named after their inventors, are both intended to move debris or “ear rocks” out of the sensitive part of the ear (posterior canal) to a less sensitive location”

This part however makes less sense

“The otoconia are dislodged from their usual position within the utricle, and migrate over time into one of the semicircular canal.BPPV uses angles 45 degree to be precise which is derived from the angle of the semicircular canals to move the otoconia out of the canals.”

Why would these rocks be an issue? They can’t still be connected to neurons?!

And I’ve seen many explanations that talk about “putting the crystals back” which is just silly.

Where are the images showing the before and after locations of otoconia? Scanning can’t resolve this yet? Oh, so it’s just a hypothesis?!

I remain a sceptic.


#15

The nystagmus stops after a successful epley in a dix-hallpike position.

The only outward facing evidence of vertigo till date is nystagmus. It’s better than a scan showing the rocks.


#16

Nystagmus would no doubt stop after a leak stopped (albeit potentially temporarily)

I look forward to further evidence either way …


#17

Ha ha I give up…personally epley did nothing for me but a bunch of people tried it on me saying it cannot hurt.


#18

@turnitaround, if you haven’t seen this page yet it might give you more information:
https://www.dizziness-and-balance.com/anatomy/ear/otoliths.html


#19

Familiar with the anatomy and have read this page in the past :slight_smile:


#20

This is on a tangent, but I was talking with a friend (a molecular geneticist who has done pharmaceutical research) about my vestibular problems and she said that there have been quite a few studies done that concluded that people with osteoporosis (which I have) have a higher incidence of BPPV.

I don’t have BPPV, at least according to all of my test results, plus I haven’t had osteoporosis for nearly as long as I’ve had the dizzy problems. So I don’t think that explains anything in my case.

But it makes me wonder why the incidence would be higher…