I wanted to introduce myself

New here, let me introduce myself šŸ¤
1

Hello everyone,

Iā€™ve been lurking for a while and finally decided to make an account. Iā€™ve been searching for months for answers about my illness and I always end up back to this forum.

Just a little background. Iā€™m 32 years old, female. This all started for me I believe in June 2015 after I moved across the united states from California to Ohio. It was an extremely stressful time. I started to get blurry vision, after images, sensitivity to light. It was so bad one night, I went to the ER and they said ā€œyou have a migraineā€ and sent me home. I thought it was strange because I didnā€™t have a headache.

A year and 1/2 passed ( October 2016) and I was pretty much symptom free aside from some fluid in my ears and fluctuating hearing loss. Until one day I noticed my visual symptoms coming back. I felt off balance. I suddenly had eye floaters and visual snow. My eyes felt like they were jumping around. I started vomiting and had the worst vertigo of my life. I couldnā€™t walk. I was walking into walls and felt very weak. I also had mild headaches at this point. I went back to the ER and they said that I had labrynthitis.

I saw my primary care dr and she was very dismissive. Said it was probably just bppv.

Around this time I started getting vertigo every 4 weeks. After an ā€œattackā€ I would feel like I was in a daze for a week or longer. Feeling tired and weak and in a brain fog. The visual symptoms were 24/7. Eyes jumping all the time. I started having other visual symptoms like difficulty in fluorescent lights, driving at night because of headlights, and difficulty looking at patterns or high contrast things because they appear to move. I started getting tingling in my body like electric zaps. I noticed they tended to get worse the day before an ā€œattackā€.

It has taken me MONTHS to convince my primary care dr that I have something other than bppv and anxiety.

My ENT was also very nonchalant but did finally refer me to a neurologist when I mentioned that I was getting mild headaches when I have vertigo. Iā€™m still waiting to see a neurologist. I canā€™t get in until the end of April. Which is very frustrating because I feel like entire life is on hold. I have so much anxiety because I never know when my next ā€œattackā€ will happen. I have trouble working. Iā€™m a photographer and the visual symptoms have completely overwhelmed me.

Some other things:

My ENG was ā€œnormalā€. I have mild to moderate ā€œcookie biteā€ hearing loss.

I had a CT scan of my head and they found fluid in my mastoids but nothing else.

Iā€™ve also seen an opthamologist and an optometrist who said my eyes were physically fine.

Iā€™m just so frustrated at the lack of answers after 5 months of actively trying to find a diagnosis and get some proper treatment.

Does this sound like MAV to anyone? My symptoms are so strange but the only time I ever have said to myself ā€œthose symptoms sound like mineā€ were from reading this forum.

Any thoughts? Iā€™d truly appreciate any feedback.

2

Hey! I am sorry to hear that you recognize yourself in all the comments. I know it has two sides ey: finding a diagnose is nice but dealing with this one is quite challenging.

I am a Newby here too so I canā€™t answer all your questions. Just want to let you know that I have read your post and wishing you all the best with finding your answers!

3

It does sound like ear trouble. I would investigate the tricyclics if you want to control the eye flickering which will help all the other symptoms like nausea.

ā€˜Labrynthitisā€™ is a bit of an old fashioned diagnosis. I donā€™t think ear trouble has anything to do with viruses usually. Imho doctors blame unexplained things on viruses. I think mechanical pressure can create the hearing loss as it changes the physical characteristics of the ear as a microphone. And to some extent I believe this must be reversible if you can fix the cause of the pressure change. Though cookie bite sounds a bit odd I guess, you might expect a roll off?

I personally think MAV is also a bit of an odd diagnosis because I dont think migraine is the driver, just a symptom. Unfortunately itā€™s the fashion. But no harm as treatment is what matters.

If you want my opinion, MAV is something to do with the inner ear plumbing and pressures. Hydrops would be a better descriptor. And by that I donā€™t mean Menieres. That would mean profound hearing loss was involved.

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Thank you so much, Agnes. You are totally right.

5

Thank you turnitaround.

I feel like they just threw ā€œlabrynthitisā€ out there because they couldnā€™t find anything else that fit. I think, the cookie bite is a bit odd too but there is a long history of deafness and hearing loss in my family. They are saying its congenital. I always attributed my hearing loss to all the ear infections and tubal surgeries (I had 4 sets of tubes when I was a kid)

Iā€™m not too familiar with hydrops is that fluctuating ear fluid? That is something that I struggle with a lot. I was convinced for months that I had menieres but like you said my hearing test states otherwise.

Iā€™ve always sorted of suspected that the underlying cause of my ear fluid is from allergies. Iā€™m allergic to grass. When I lived in California I didnā€™t have any ear trouble. After moving east where there is a ton of grass, I got hit with this. I also have a lot of food allergies.

Thank you for reply.

6

Hi

I donā€™t get all the spinning vertigo and the ear problems you have but I have had most of the visuals you mentioned except visual snow and jumping vision. I have had blurred vision, vision which seems like I have a layer of film over it, floaters, car lights to bright, vision to bright in general, bright blue dots in my vision in the mornings when I went into bright rooms, not being able to take in the whole picture when I looked around or look at myself in the mirror, greyish vision like I was in a foggy room and objects used to shake in my vision. I even had to get a new iron board as it was spotty and ironing shirts with lines on would make me woozy. I was diagnosed with migraine variant. My doctor told me the reason for my visuals is because my vestibular system itā€™s working so itā€™s using my eyes to do all the work. He said before I would look where I was going, talk to a friend and think about what Iā€™m having for dinner but now my body canā€™t do all that and my eyes suffer. He said most people assume itā€™s a eye problem and go to the opticians. All my eye symptoms have gone now. Iā€™m on nortriptyline. Just wanted to let you know I understand the visual part x

1 Like
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Iā€™m so glad the visuals are gone for you! I know for me itā€™s the big symptom that affects me everyday 24/7.

8

Yes the tricyclics are especially effective for the visual symptoms.