Newly Diagnosed with Vestibular Migraine - some questions

New here, let me introduce myself šŸ¤
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Hi!

Sorry this is a bit long, but itā€™s 16 years of info crammed into a few paragraphs~

Iā€™m a 32 y/o male, and have had issues with dizziness dating back to high school. It would come and go, to varying degrees. It started in 10th grade, with hours long episodic dizziness every 3-6 months. During these episodes, the room would spin, and then Iā€™d be left with disequilibrium for days to weeks later, or sometime Iā€™d feel perfectly fine the next day. At one point, in maybe 11th grade, I recall having a period of about 4-6 months where I was ā€œdizzy.ā€ This is what I would tell my parents/doctors, and they said, ā€œyou have allergiesā€ or ā€œitā€™s just anxiety.ā€ Repeatedly they put me on anxiety drugs(!). Amazingly, I donā€™t recall them ever testing anything, other than trying the epley maneuver. Without fail, being constantly dizzy makes one anxious, so I donā€™t recall what came first, but I have, indeed, had diagnosable anxiety for years, and in the early years, I also blamed anxiety. Moving forward, I donā€™t recall having any major issues between the several years I was in college in Philadelphia, until sometime during my senior year, I had a dizzy episode while hiking with a friend. It lasted several hours, and that was that. So I went maybe 4 years without major problems. Up to this point, weā€™ll say 16- 24, my only symptom was dizziness/disequilibrium.

In 2012 I moved to Chicago, and sometime during that year I began to have what I referred to as ā€œbrain fogā€ on and off that would last hours and was only relieved by intense exercise, and then I started noticing that my ears were always full, and I was constantly yawning to try and clear them. I mentioned this to my GP in the summer of 2012, and he said all was clear in my ears. So, I was like - ā€œokayā€¦ā€ In 2013 I woke up one Saturday and was reading in bed and turned to grab something and ended up in a dizzy spell that was so bad, I immediately started vomiting because the room was spinning so bad, and went to er. They gave me a benzo and some meclizine and gradually things improved over the course of several hours, and I went home.
I had a couple other episodes within the next few years.

In 2015, I started having some mild ringing in my ears, which I originally assumed was the result of going to see a concert and having not worn proper hearing protection. It never went away, and so when I began to google my symptoms (vertigo, ears full, tinnitus), and then went to an ENT, I was told initially I likely had Meniereā€™s Disease, but my audiogram was fine, and the doctor did no testing. My own research had informed me that he couldnā€™t make a diagnosis without more evidence, so I went to a different doctor who did an ENT Test (with air). I came back to see him a few weeks later, and he said he thought everything was fine. So I went along with my life.

In the spring 2016, I had 2 or 3 pretty bad episodes, and by this time I had moved, so I saw another ENT, who did an MRI, and checked out the lab work from Chicago, and he concluded that I may/may not have Meniereā€™s, but again, my hearing was fine, so he was uncertain. I got busy with life, and ignored it the best I could.

Spring 2016 - spring 2017, Iā€™ve pretty consistently had issues, often feeling off-balance when I walk, short burst of dizziness that last 10-60 seconds (sometimes longer), days where I have disequilibrium all day, continued ear fullness and ringing (more recently a low tone ringing, along with the high tones).

On May 1 I went to see Dr. Furman at UPMC Pittsburgh, and their clinic had me come in at 8am and they did a battery of tests in one day. Hearing Test, ENG, Rotational Chair, and VEMP test, and then I had a consultation with Dr. Furman in the afternoon.
My hearing test was fine, but some of the other tests were NOT normal, and he said that my tests show very clearly a diagnosis of Vestibular Migraines. He said my clinical work does NOT indicate, in any way, Meniereā€™s. Heā€™s worked with Meniereā€™s patients for 35 years, and I donā€™t have it. That said, he indicated there is some crossover, but my tests show classic Migraine dizziness.

Ok so that is that. I am going to have a follow up with the Dr soon, but as of now, he said I could modify my diet for migraine triggers. I asked what to do if I feel like Iā€™m getting an attack, and he said, ā€œwell if itā€™s only happening 3-4x a year, then probably nothing.ā€ I was kinda out of it that day, and didnā€™t follow up with enough questions, so here are some questions:
- Medication? Abortive medication when I feel an attack coming on or days Iā€™m feeling off balance? Doc seemed to brush this off, but there has to be something I can take?
**- Vestibular rehab at all beneficial? **
- Where to start with diet? I ate Pizza last night and was dizzy all morning this am, with ears plugged up and louder tinnitus? My job is physical and man itā€™s tough to work on days like today. luckily I was off today
- supplements? I just started a very high quality probiotic and multivitamin
- weather? I live in Pittsburgh. Itā€™s ALWAYS wet and rainy. Iā€™m convinced things have gotten progressively worse since I moved hereā€¦ Should I move to Colorado or somewhere dry!?
- In the manual on this website it suggests NOT taking ibuprofen? Can someone explain?
- I do get headaches, but they seem entirely unrelated to the dizziness, so Iā€™m havnig some trouble believe the relationship between ā€œmigraineā€ and ā€œdizzinessā€. Can someone help clarify this for me?

Thanks so much for taking the time to read/respond.

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ā€˜Vestibular migraineā€™ is simply a bucket diagnosis. It describes a set of symptoms but not an exact pathology. I donā€™t think any doctor knows what causes it. I believe my case history sheds some light.

Somewhere, someday, someone decided that migraine can cause 24/7 dizziness and tinnitus. Or they read the title of the condition too literally. Imho this is baloney. it seems far far more plausible to me that migraine can be an outcome to a vestibular upset but not a cause. If you read Dr Hains website end to end you will note that many ear conditions can cause migraine.

MAV is basically the set of symptoms you get with Menieres minus the hearing loss. Dr. Hain wonders if the two conditions are part of the same spectrum. I think heā€™s onto something. I call It ā€˜ear troubleā€™

I believe my MAV is due to a fistula and/or Secondary Hydrops. My journey with imbalance and dizziness all started when I foolishly pointed a shower into my ear. I suspect this somehow punched the ear drum and caused a fistula in one of the inner ear windows by the transfer of physical force by the stapes or a brief barometric pressure. I was dizzy, nauseous and off balance for 5 weeks. Then it stopped. But what was really obvious was from that day forward I would feel fluid in my ear every morning that would drain away after a few seconds of getting up. I ignored this as artifact until 5 months later when I suddenly became light headed one day and all the symptoms came back.

I think itā€™s far more likely MAV is a physical issue because the ear is so complex. Migraine and knock on neurological issues are a given because its a critical sense. If something goes wrong and it starts to behave in ways the brain was not trained to expect you get all kinds of impacts neurologically.

It sounds to me like you have had ear trouble nost of your life and just like MAV it has morphed over time.

I would see if the MAV meds help. Theyā€™ve helped me tremendously.

Today, over 2 years after the original incident Iā€™m still on 20mg Amitriptyline nightly but this week I have 99% of the dizziness and imbalance under control. I lead a normal life. I still get annoying tinnitus but is tolerable most of the time. I still get vertigo attacks but get weeks of remission. The fluid in my ear barely appears these days and Iā€™m wondering if at some point I may soon get some significant remission.

Best of luck with symptom management and I hope you get remission very soon.

James

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Hi James, Thanks so much for your thoughtful response. Yes, Iā€™m hoping for some relief soon. Iā€™ve dealt with this for too long. Whom is Dr. Hain and what is his website? Iā€™d love to check it out.

Thanks again,

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Here you go his page on MAV (but read around his site):

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

The drug trial flow chart towards the bottom is most useful.

And his excellent page on medicine for dizziness:

http://www.dizziness-and-balance.com/treatment/drug/drugrx.html

His site lacks anything on Secondary Hydrops. For that I found this:

https://vestibular.org/secondary-endolymphatic-hydrops-seh

Be aware that reading too much of this stuff can worsen health anxiety. That said itā€™s best to be informed so you can work out for yourself what your challenge is. Iā€™ve read a lot of scientific papers over the last two years but it has caused flare ups of anxiety on occasions.

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My other questions if anyone could answer: my ENG apparently showed a 38% weakness to the left, although when I said weakness, the doctor corrected me, and used another word - not weakness. The Rotational Chair showed something to the left ear as well. I requested my medical records so when i get them, Iā€™ll be able to articulate this better.

Now is this a permanent damage type thing? Or will that correct itself once I get this under control? Should I start this rehab asap to correct this? My doc wasnā€™t helpful after the initial diagnosis! Should I get a second opinion?

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Mark, I wouldnā€™t go too crazy, but Iā€™d get at least 2 other opinions.

The thing is, though, MAV medication is pretty generic and would probably help alleviate symptoms for most ear conditions (MAV, BPPV, PLF, even Menieres) so Iā€™m not sure treatment would be much different even if your diagnosis varies, however, there is no harm in trying to get answers.

To prepare you, though, I think ENT medicine is so under developed its quite shocking.

Sorry, canā€™t answer your ENG questions, will defer to others.

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Iā€™ll keep this short as Iā€™m on my phone. My experience similar to yours. Meniers type attacks that are horrendous but no hearing loss. And I have continued vertigo and dizzy essential which has gotten worse after attacks. Last attack I vomited 12 hours and then 3 days in the hospital. Couldnā€™t drive or walk well for months and still takes a mental effort to walk so I donā€™t seem drunk. Dizzy and brain fog constantly but I am abit better over time and mostly just better at dealing with it.

I am very skeptical of most doctors and I have very accomplished ones specializing in this area. I think most of the time there is a physical reason with a bad or failed part of the vestibular system which is very complex and hard to detect even with specialized MRIs. Many drugs to me just dampen everything in an attempt to make you feel less dizzy but the side affect are worse for me than being busy if you want to keep doing things.

I will say that lower salt diet and the diuretic (triampterene/HTC I think) have helped me avoid attacks. I also had good help after attacks with steroids but they donā€™t want you doing these long term. The one drug that helps me if I feel like I am going to have an attack is Valium. I carry valium and Zofran (absorbed in mouth and stops vomiting) with me at all times. A contact lenses case works well for me to carry these in my pocket.

I believe for myself there may be a surgical solution but itā€™s not clear from imaging and brain surgery is scary. I have an enlarged artery on the left side that is up against the nerves involved in the vestibular system. There is a case study of someone with this who was cured by relocating the artery and growths from it onto the vestibular area. I am hopefully but doing nothing for now.

Good luck

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Iā€™m assuming they found the enlarged artery on a standard MRI? Yes, that type of surgery would be a bit scary. Keep us updated on your situation.

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Yes, ENT medicine seems to be a bit behind the times. I was thinking the other day - ā€œweā€™re going to be landing on MARS pretty soon, and modern medicine cannot even remotely give a sensible explanation of why Iā€™m dizzy!!!ā€

Hereā€™s the thing: At this point, Iā€™m doing some basic stuff. No caffeine, no alcohol, and avoiding shitty foods. Iā€™m gonna see this fancy nutritionists who is gonna do a bunch of cutting edge nutrition stuff, including a gene test, and various other biomarkers. If this is indeed Migraine, it seems that is a place to try and make some headway. Even if it doesnā€™t help the other problems, it will improve my health.

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It was a special MRI focused on Trigeminal Neuralgia done at Johnā€™s Hopkins as my local place could not perform this type. Had a follow up review with a large group of doctors and a picture of my brain on a large screen behind me. I think they didnā€™t see enough detail to see a clear solution with surgery so they are just having me try different drugs but so far none made my balance system better and just made me into a zombie. Iā€™d rather be dizzy than a zombie. Just concerned about having another attack as I seem to get worse each time and one year out from the last attack I am still constantly dizzy and get worse with exertion, bending over, stress, or just randomly. Iā€™m afraid with the next attack I may lose my ability to walk or stand. Maybe that is when we go for the surgical option.

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I saw Dr Furman too! Had all the awful tests, with a conclusion/diagnosis of MAV. I ā€œfailedā€ the rotational chair test. Essentially, my vestibular system isnā€™t working, and I have damage to one of my ears. Some mention of ocular reflex-- canā€™t keep it all straight anymore. Iā€™ve tried every drug: klonopin, Amitriptyline Nortriptyline , gabapentin, topiramate, propranolol, an anti depressant (canā€™t recall which one), and other stuff I canā€™t remember. Iā€™m so done with all of it. I feel robbed of my life. I feel as if Iā€™ll never be normal again. My local neurologist is sending me to a migraine clinic in Rochester, NY; she said sheā€™s exhausted her arsenal. I hate living this way, and all the drugs make me feel awful, so I donā€™t take them (except a low dose of Klonopin, which Iā€™m going to ween off). My vision is a trigger, lying down is a trigger, moving my head too quickly is a triggerā€¦on and on and on. I am desperate to find a cure. Iā€™d even consider surgery, if it were an option. Thanks for listening.

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Hello,

I have had may friends that have had huge success with migraines. AtlasPROfilax helped them and it made sense.
Two of them had daily headaches and are now headache free. Check out the AtlasPROfilax directory and find
the closest practitioner to you. It is a one time treatment and not very expensive considering the benefits.
Anyway, I wish you the best!

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Hi there,
Iā€™ve just read your stories and, although its kind of a comfort to know weā€™re not going through this horrible experience alone, it is horrible to hear the stories of other people that are either suffering more or have suffered a far lot longer than you.
I am 37 and have suffered different forms of migraine since i was in primary school.
Only 2 years ago i started the vertigo symptoms which then kept me off of work for 3 months.
I too had various tests which were for suspected ear related condition and, it was only last March i got my Vestibular Migraine diagnosis.
I was symptom free a month and a half ago, only to have them back again like 2 years ago and have been off sick nearly a week. Look up the website My migraine brain where youā€™ll read the story of someone else and learn about triggers. Any advice anyone has is always a plus. Best wishes Helen

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Hi id also like to check it out.
My symptoms started about 4 weeks a go i was away on a family holiday woke one morning with vertigo it was so bad hubby had to escourt me to the lav and back after that day my head was left with pressure. Then the worst bit came 2 weeks later i was driving to work with my mother in law on a motorway and lost my vision still to this day not sure how we ended up on the hard shoulder both us in one piece. Ambulance came took me to hosp did cat and mri as suspect of a stroke but all came back clear head pressure was crazy so was the dizzzyness got told ive vestbula migraine which i found odd without a typical headache. The dizzy feeling hasnt gone somdays im so tired i cnt get out bed with it. Its so frustrating. My dr has since told me to go back in 2 weeks if no improvement after reading on here not sure what anyone can do.

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Hi Mark,
Did you get enough answers to your questions yet?

  • Medications: i tried abortives on suggetsion of my GP who thought along the same lines as you did. My symptoms got seriously worse. And structurally so. So in hindsight i feel that was a bad move. #understatement
    Later my now neuro-oto told me abortives donā€™t do a thing for/against MAV.
  • Diet: i chose to get help with diet from a nutritionist. Which helped doing the ā€œdietā€, and finding a good food-balance for me while avoiding triggers in food. By now it is all so familiar to me, it comes naturally to keep a balance and there are no things forbidden, just things i better avoid when i know and feel that my ā€œtrigger-bucketā€ is filling up and i am ā€œmoving towardsā€ my threshold. Pizza still is a bit of a risk generally though, unless i make one myself.
  • Supps: same as above: get some help figuring things out. I ended up with riboflavine as the most effective for me, and a low dose of melatonine.
  • Weather is a trigger too. Now that my trigger-bucket is easier to manage, not all weather circumstances get me over my threshold no more. Weather is everywhere. If you know some place really is better for you, and you have tried that, consider moving. But i wouldnt move because other MAV-people swear by a certain region. For me rainy cool weather is no problem at all.
  • Painkillers can cause a boomerang effect for the migraine-brains amongst us, thus adding to your symptoms in the long run and making them spiral out of control, instead of helping. They should be taking only very occasionally and be avoided on most occasions, to avoid this effect. In my country every migraine-sufferer including the MAV-people, are weaned of the painkillers firts thing by the specialists/in the hospitals etc - it is a obligatory part (first step in) of any treatment nowadays.
  • I never got headaches, still i suffered MAV badly. It can be a bit confusing as in general we tend to strongly connect ā€œthrobbing headacheā€ with the word ā€œmigraineā€. But there is a difference, medically/technically, even if a throbbing headache can be a symptom of many a migraine. Vestibular migraine does not happen in the same part of the brain; in these cases the equilibrium-info-processing parts of the brain are suffering migraine and this can go with or without ā€œheadacheā€-pains. Instead dizzyness or vertigo can both be a result of these.
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Thanks so much for taking the time to answer all my questions :slight_smile:

Things have been going pretty good the last several weeks. Seem to be in a bit of a ā€œremissionā€ or something. We shall see how long this lasts!! I went on 3 supplements, Iā€™m hoping that has something to do with it.

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canygirl61,i to am fed upā€¦my dr. said its an inter ear nerve problemā€¦my last resort is to sever one of the nerve that sends signals to the brainā€¦the left ear nerve and the right ear nerve that sends signals to our brain is not sending the same signals, which causes i causes the imbalance and dizziness ā€¦I have an appt. on 1/30 to make my decisionā€¦iā€™m at the point where this is not the life I can put up with and will try anythingā€¦ I understand marijuiana controls dizziness.alsoā€¦and is used on patientsā€¦that to I will tryā€¦never thought I would say thatā€¦iā€™m desperateā€¦marge

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Is amitriptyline the only drug you have tried and how did it feel when you started it/ side effects/ when did it kick in? (Apologies if this is documented somewhere)

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No problem, I searched myself as have documented this before but couldnā€™t find a post either!

No, I tried Propanolol first but it couldnā€™t deal with the side effects (and the positives seemed hard to find). It really slowed down my walking and I started to get chest pains after a few days so stopped it. I didnā€™t persevere to see if I could break through the side effects.

Amitriptyline was much better from the word go and very obvious within the first 4 days. I ceased having migraines almost immediately on just 10mg. Dizziness, marshmallow floor was much improved. Visual vertigo all but disappeared immediately (and I had it bad, with the world swinging from left to right and back again for a bit at times, and awful strange feelings in malls and supermarkets). When I upped to 20mg I found most of the remaining dizziness disappeared (though imbalance remained and fluctuated), and all discomfort with using a computer vanished.

Main side effects with Amitriptyline are: dry mouth (took a few months for this to go), the odd nightmare (though rare), considerable drowsiness (I took it at 9:30pm so I was more functional in morning, but be prepared for some lethargy even then), and perhaps worst of all mild constipation. Of all the side effects this last one lasts the longest and is the most annoying. I found it very easy to titrate dosage up and down. I did not get increased benefit when I tried 30mg so stuck with 20mg. Coming off it was a cinch.

Note that whilst on Ami, symptoms still fluctuated, especially imbalance, and I still had vestibular attacks (a huuuge one 6 months in to taking the drug for example which was a big disappointment) but I was migraine free and was able to go back to work (limited hours initially) and deal with computer screens for hours and hours.

There is something going on other than migraine I suspect, and its most likely in the ear. Ami is helping to deal with the neurological fall-out from that and supports you as the ear improves and your brain ā€˜gets its head around the new earā€™. Miracle drug for this imho and clearly popular in the med poll.

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Thanks very much for this! Coincidentally I tried Amitriptyline way back in the day after meeting a neurologist, I hadnā€™t even heard of MAV back then. My memory is hazy but I believe I didnā€™t get on with it too well and stopped after a few days. Maybe I should revisit and just give it another (longer) go. I was on propanolol for a long old time and its one of the drugs that actually gave me no side effects what so ever, however it didnā€™t appear to improve anything either and my neurotologist didnā€™t tell me to up the dose. Later on when I changed to Dr. S he didnt seem to want to explore propanolol further.