Andrew's Diary

[Nieto13]

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues:
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness:
Start of chronic phase: June 2019
Age at chronic onset: 51
Started medication: Venlafaxine ER 12/20/2019
Stopped medication:
Number & type of consultants seen to date: ENT, Neuro-otologist, two Neurologists, two audiologists, two Neuro Opthalmologists, VRT therapist
Diagnoses received (one I’m “running with” first): Vestibular Migraine
Medications used successfully for MAV: Venlafaxine is helping
Failed medications for MAV: steroids didn’t seem to help
Non-pharmalogical treatment tried which helped: vitamins and Magnesium
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:None-I don’t eat processed foods though
Any hearing loss in either ear: Diagnosed with bilateral hearing loss although I hear much better now
Persistent or intermittent tinnitus and character: Yes.
Other chronic conditions I’m suffering from: visual issues
Medication I’m taking for other conditions: Losartin/Hi blood pressure
Any personal history of migraines: Yes. In the spring and fall I get headaches that can last a month. I also would get 3-4 true migraines per year.
Any family history of migraines*:none. Mother and brother have trouble with patterns, triggering dizziness.
Any history of ear problems: No, however I have very small ear canals and have boney growths due to years of competitive swimming.
How did friends, family, and doctors react to your symptoms?:Some don’t believe this could be happening. I don’t talk about it much anymore.

Symptom summary

What’s Gone: Nausea, rocking, head zaps, ear fullness, flu like symptoms. certain types of headaches, shaky hands, internal tremors, ear fullness, most brain fog
What’s Ongoing: mild headaches in the back of my head, mild dizziness, degrees of phono/photophobia, .major tilting vision when moving (visual verrtigo or oscillopsia)
My Worse Day Now: (description of the worst day you get now)

Rough History

I’ve had BBPV once before, maybe 15 years ago, that lasted one week.

June 2019, I turned over in bed and the room was spinning around me at
mach2. It lasted several seconds. I shook it off by closing my eyes. A minute later it happened again.Two weeks later I started feeling a better. All of a sudden I felt like someone had slammed a door on my head. I fell to the floor thinking I had a stroke. Fortunately I did not. I spent much of June and July 2019 having bad balance issues and had to hold on to things to walk. By the end of July things seemed to improve.In early August I got a virus and it began:
Symptoms:Aug-Jan 2019
Migraine headaches with extreme nausea.
Banded headaches that would travel to different areas of my head.
Tingling on my head as if I wore a baseball cap that was ten sizes to small
Shaky hands
Internal shaking
Visual vertigo
Raging tinnitus
Balance issues
Ear fullness
Brain fog
Brain zaps (literally minimum of 50 per day)
rocking sensation
I’m sure there is more but I never kept a log.
After many tests I was diagnosed with vestibular migraines. The tests performed were MRI, CT scan, MRA . All were unremarkable. Next I had an EEG performed by a neurologist which was also fine. I saw two neuro opthamologists regarding the visual issues but both Dr.'s said my visual system was functioning properly. Two VNG’s,were performed, one caloric test indicated a 15% difference in left ear vs the right ear. The second test indicated both ears were normal.Somewhere in this battery of testing two different audiologists performed hearing tests. Both indicated bilateral loss of hearing. I think part of this was due to not being able to hear certain tones due to my extremely loud tinnitus. All my tests were performed between Oct-Nov 2019. My Neuro-otologist had me try a month of VRT. I don;t think it helped. One day the therapist had me moving my head back and forth rather quickly and my dizziness became really bad. I still haven’t fully recovered from that day. I chose not to continue the VRT Finally in Dec 2019, I found a neurologist who diagnosed me with vestibular migraine. She went into great detail about the condition. She prescribed (Dec 20th, 2019) 37.5mg of Venlafaxine ER. She advised we to start with 9mg and work my way up slowly…
Symptoms that I am still experiencing:
Infrequent minor migraines.
Visual vertigo-this is a killer for me
tinnitus -Intermittent and much lower in volume
Very Minor Balance issues

It’s been a rough ride and I have a long way to go as every day presents a new challenge. I wanted to write a quick diary (sorry my timelines are not great but I never kept notes) to show people that there is hope. Several months ago I couldn’t make it through a day or even empty the dishwasher without crashing. Today I can function 75%-80% on a daily basis.

• It all began when …
• The first thing I did …

Start of Journal

Today I …

[Onandon03]

Hi Andrew. Nice bit of positivity in your post. We can all do with a bit of that. So pleased you found time to start up a Personal Diary. It’s the best way to keep track. I know what you mean. I wish I’d kept a detailed diary from the very beginning, not that I’d have known what was the beginning then come to think about it anyway. I still think of odd instances from years back which would probably have been red flags to those in the know. Frustrating not to have timelines but still you’ve obviously got a good memory and managed a pretty full history without.

Your current neurologist seems to know the score. You were lucky to find her, I’m glad you are improving. Venlafaxine has a good reputation for visual issues so I guess you are on the right track. You’ve come a long way from your misdiagnosis of BPPV. BPPV doesn’t last a week. Unfortunately many medics are confused on that one. I suffered that one myself, for 12 years. Then I even had an ENT tell me I shouldn’t be that ill with ‘what I had wrong with me’, ie BPPV! It’s a common confusion it seems. Still it’s history now. Best look to the future which I’m sure you are doing.

[Nieto13]

It’s been one year since my vertigo episode triggered my VM diagnosis so I figured it’s time to update my diary. I am currently on 75mg of Venlafaxine. I have been on this dose for one week now and on Ven for 5 months… I have had periods of time on a lower dose where I felt 85% but then MAV would would creep up on me and symptoms would return so my neurologist and I decided to go up to 75mg. I did have one major breakthrough about two months ago where I rolled over in bed and the world spun around me. It was brief but did set me back quite a bit.
Symptoms I rarely experience anymore if at all
nausea
rocking sensation
shaky hands
ear fullness
tinnitus in left ear all but gone. Right ear is still there but much improved
flu like symptoms
Most brain fog
Headaches are at a minimum ( maybe once a month)
Balance is much improved. No veering off to the side when I walk
brain zaps
Current symptoms
phonophobia
tilting and jumping vision 24/7
slight dizzyness but I believe it is because everything is wobbling as I turn my head
Things move when I stare at a fixed objet
things in peripheral vision move as I move
gaze stabilization is off
My head is slightly full,
I have difficulty being out at night
All of my current chronic symptoms seem to be some disconnection in the way my brain perceives vision.
As a matter of fact, I tried to play soccer with my daughter and as I was running full speed, I looked at the ground and it began to spin. Subsequently, I lost my balance and fell fracturing 3 ribs. It’s a bit hard to breath at the moment. Gotta love MAV…
I hope every one is doing well.
Andrew

[Onandon03]

@Nieto13

Things move when I stare at a fixed object

Oscillopsia. Very common with such conditions.

You seem currently to be experiencing quite a variety of vision effects. Has this always been the case or do you think they have increased since taking Venlafaxine.

[Nieto13]

It’s hard to say. Some vision issues have improved and some new ones have appeared. I do wonder what would happen if I decreased my dosage. Venlafaxine has worked great for my other symptoms so I’m apprehensive about decreasing it. I’m not sure what the right move is.

[Onandon03]

Notice that months on you are still suffering with Oscillopsia. I have previously so often read that it’s common with all vestibular conditions however just read the definition of Oscillopsia as per the Glossary on Dr Hains website, dizziness-and-balance.com which reads ‘Gaze instability, usually due to Bilateral Vestibular reduction’ Elsewhere on his site I noticed a couple of references to Oscillopsia linked to drug Ototoxicity so now am not so sure. So just thought to let you know. Could be worth a follow up?

[Nieto13]

Hi Helen,
It was very kind of you to send me that information. It was very informative. The interesting thing is I had two VNG’s and both didn’t show vestibular loss. I most definitely have oscillopsia and vestibular troubles though. The audiologists did say bilateral hearing loss to a degree. I’m not sure which direction to turn Stay with Venlafaxine and hope for the best or revisit the entire VM diagnosis.

[Onandon03]

I had noticed your comment above about ears and swimming and wondered if there might just be a possibility. Reading Dr Hain just briefly there were several refs to Oscillopsia and Bilateral issues, I got the impression the two are most often linked, the emphasis bring on the ‘Bi’ as opposed to ‘Unilateral’ but I’m only an amateur. The other thing I think I found out was there could be a link to a very rare familial form of migraine called Familial Benign Recurrent Vertigo

IMO I would want to explore any avenue which might just lead me to finding a root cause. A MAV diagnosis can be an umbrella term, a wastepaper basket term or just a rubbish diagnosis.

Btw what happened with the VRT? Helen

The

[Nieto13]

Thanks Helen!
The bony growths can cause hearing loss and other issues. They can be remove by basically drilling inside the ear (outer not inner). There is a risk of hearing loss (ironic) It concerns me as my tinnitus and ear fullness has greatly improved I agree, I need to explore the possibility of some sort of bilateral issue. It’s good advice to revisit with another otolaryngologist and get another opinion. The last otolaryngologist didn’t explore to many options within the inner ear. He saw some eye tracking issues on the VNG and off to the neurologist I went.

I do/did have many of the classic MAV symptoms so I think staying on Venlafaxine is beneficial.

VRT: I began vrt when symptoms were at their worst. I continued for a few months. I don’t know if my illness was getting worse or if the constant head movements of VRT made me worse. I just know that after each VRT session I would feel awful and the recovery time got longer and longer until the dizzyness never left. I think if I was better compensated the results would be different.

I hope you are doing well!
Andrew

[Onandon03]

VRT: the aim surely is to bring about compensation. VRT is infamous for making MAVers worse. I had exactly the same experience myself. Powerful stuff it certainly brought about changes. Unfortunately in the wrong direction. Made me ten times worse.

Ah I spy ‘eye tracking issues’. Have you checked out Vertical Heterophoria or indeed any form of Conference Insufficiency/eye misalignment? As a cause of the ‘tracking issues’, not necessarily the MAV. It can also be a cause VRT worsens symptoms. Some eyes just don’t track.

[Nieto13]

I do have slight tracking issues, imy vision seems to be a combination of issues: tracking, Gaza instability, convergence, things moving when they are still,…

I did see two neuro ophthalmologist and both said things were fine. I am going to make an appointment today as the tests were one year ago.

[Onandon03]

Apparently about 5% of the population have similar issues, me included. On further testing, I doubt you will find much has changed. Most of those sorts of things are congenital and stable and under normal circumstances don’t cause any problems. Each individual brain learns to create a way around its own system providing that is stable however idiosyncratic it may be. I would suspect where those 5% can hit a brick wall is where a second affliction kicks in. Hello MAV? I remember reading years ago that the balance system can cope running on one cylinder short of the full set, and bear in mind here ‘Eyes is Balance’ as one top specialist told me, but to do so it needs every other component to be working at 100% efficiency. I suspect that could be where having a slight variance in how our eyes work may impede/delay/prevent us returning to a fully working vestibular system as readily as the majority of the other 95%. A bit of a downer that may be however I guess much the same might apply to others of the 95%. Even a replacement hip causes some loss of balance integrity and with both hips replaced that loss more than doubles