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Andrew's Diary

Personal Diaries šŸ“–
#1

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 Iā€™m ā€œrunning withā€ first): Vestibular Migraine
Medications used successfully for MAV: Venlafaxine is helping
Failed medications for MAV: steroids didnā€™t seem to help
Non-pharmalogical treatment tried which helped: vitamins and Magnesium
Non-pharmalogical treatment tried which didnā€™t seem to help :
Dietary triggers identified:None-I donā€™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 Iā€™m suffering from: visual issues
Medication Iā€™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 donā€™t believe this could be happening. I donā€™t talk about it much anymore.

Symptom summary

Whatā€™s Gone: Nausea, rocking, head zaps, ear fullness, flu like symptoms. certain types of headaches, shaky hands, internal tremors, ear fullness, most brain fog
Whatā€™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

Iā€™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
Iā€™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 VNGā€™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 havenā€™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 slowlyā€¦
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

Itā€™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 couldnā€™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 ā€¦
  • The first thing I did ā€¦

Start of Journal

Today I ā€¦

6 Likes
#2

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. Itā€™s the best way to keep track. I know what you mean. I wish Iā€™d kept a detailed diary from the very beginning, not that Iā€™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 youā€™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, Iā€™m glad you are improving. Venlafaxine has a good reputation for visual issues so I guess you are on the right track. Youā€™ve come a long way from your misdiagnosis of BPPV. BPPV doesnā€™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 shouldnā€™t be that ill with ā€˜what I had wrong with meā€™, ie BPPV! Itā€™s a common confusion it seems. Still itā€™s history now. Best look to the future which Iā€™m sure you are doing.

1 Like
#3

Itā€™s been one year since my vertigo episode triggered my VM diagnosis so I figured itā€™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 monthsā€¦ 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. Itā€™s a bit hard to breath at the moment. Gotta love MAVā€¦
I hope every one is doing well.
Andrew

2 Likes
#4

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.

#5

Itā€™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 Iā€™m apprehensive about decreasing it. Iā€™m not sure what the right move is.