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Undiagnosed Vertigo/Diziness for past 3+ years / looking for answers

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editfishcook
(@editfishcook)
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Joined: 5 months ago
Posts: 1
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Hey folks, just discovered this amazing site and I’ve been reading through a lot of the threads. Such a great community! 

3+ years ago on the way into work in Manhattan NY, I got off the subway and was grabbing a breakfast sandwich at the deli when out of nowhere I was hit with an insane wave of full bodied dizziness. I was able to limp into the office and grab a coworker who able to bring me to the doctors office. This scary initial episode lead to multiple appointments with ENTs, cardiologists and neurologists. ENT balance and eye test were all clear although we never did an inner ear MRI. The one promising diagnosis I’ve received has been by the neurologist who suggested PPPD. My general symptoms when I have an episode are intense head and body fog, full body weakness/tingle, non spinning dizziness. (Extremely heavy eyes at night on days when experiencing episodes). Some symptoms of smaller episodes are small ‘zings’ of dizziness, quick wobbly feeling, lighter head fog.

Here is a list of some notable triggers:

-Excessive heat

-Being in a large store with bad lighting like Target or Home Depot

-Being dehydrated 

-Looking at/walking on large repeating pattern rugs

-Being out on a boat in the fog (disoriented)

-Being in a loud claustrophobic room with a lot of people (like a wedding)

-Riding in the backseat of a car for extended period of time

-Working on computer all day (I’m a video editor by trade.. I tried blue light glasses and it didn’t really help)

In general I’ve been feeling good over the past few years but what lead me to write here is because of my most recent episode. I had some intense dental work done (3 teeth removed and 2 bone graphs inserted). Felt soreness pain for a few days then 3 days after the surgery I woke up with horrible ‘PPPD’ symptoms which lasted all day for 3 day and have slowly been getting better. 

I’m really frustrated with this. The past few years have been ok with times of regression but overall generally feeling better while trying to avoid or minimize time in situations which I’ve known to trigger my dizziness. 

I can’t afford to go down the rabbit hole again. Any suggestions on where to start or who to talk to for treatment would be greatly appreciated. 

Thanks,

John


   
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leaningdizzy
(@leaningdizzy)
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Joined: 1 year ago
Posts: 3
 

Hi John. I sympathize with what you're going through. I seem to share many of the same triggers, along with a sensitivity to bright/LED/fluorescent lights, and bending over (which combined with other triggers can result in a genuine room-spinning vertigo spell).

I apologize as I have no direct answer to your question on suggestions on where to start. I'm 5 years into my journey and all I've learned is I have a right labyrinth dysfunction, but Meniere's, Vestibular Migraine, BPPV, cervical spine components, head shaking, and vertebrobasilar insufficiency have been ruled out (or so they say). At this point I've love to rule out Lyme Disease/Bartonella, but most mainstream doctors don't buy into it as a long-term thing (let alone treat).

I'm curious about 2 things...

1.) When I take a decongestant like phenylephrine HCL 10mg (which doesn't make you sleepy), it seems to "tamp down" the dizziness. For awhile I used it as a crutch to get through the workday, though I now rarely take it as it seems to raise my blood pressure. Sometimes taking 2 ibuprofen also help "temp down" the symptoms. The theme here is it seems to act an "anti-inflammatory" which makes me wonder what is inflamed with my ear-related nerves. When I asked experts about this observation, they usually shrug.

2.) Do your monitors have PWM (Pulse Wave Modulation)? My computer is older and apparently doesn't feature this. But I understand most modern LED monitors and smartphones do and it throws people with vestibular sensitivities. Something perhaps to Google. There are folks in the apple community plagued with this and have to return phones and computers after purchasing them.


   
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Mochosla
(@mochosla)
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Joined: 5 months ago
Posts: 2
 

Hello everyone. I came across this site as I’m getting desperate with what’s happening. I’m not sure it is related to the COVID vaccine but after the first booster, I started to feel like my blood pressure would drop. I can also describe it as light headed and sometimes followed by a strange mild headache on top of my head. I get “normal” headaches from time to time but those are on my forehead and they go away with regular pain killers. I have not taken anything for the headaches I get as a result of my lightheadedness because they are mild and they go away quickly. I’m now starting to feel clumsy and sometimes dizzy. It is hard to explain. I’ve seen my Dr. and they’ve done an MRI, ambulatory  electroencephalogram with no issues found, blood work etc. Blood pressure is always normal. They have told me that it may be stress related which I doubt. 

if anyone has had any experience with these issues, PLEASE let me know. 


   
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Sara Hatch
(@sarahatch)
New Member
Joined: 3 months ago
Posts: 2
 

@mochosla  Hi, I am dealing with the same issues, undiagnosed dizziness and feeling off balance. It was very bad a year ago in July. The waves of dizziness even when I was sitting down were debilitating. I have been to ER, neurologist, ENT, General Practitioner and chiropractor.  No diagnosis so far and my symptoms have returned. Chiropractor seemed to help the most so I have an appointment next week. I have been on antidepressants for 30 years and the Psychiatric NP I go to has suggested I cut down on my wellbutrin. I was taking 300mg a day plus 40mg of prozac. She wants me to try taking 200mgs a day instead of 300 to see if that helps with the symptoms. For some reason when I take Vanquish, an over the counter tablet, which has aspirin, tylenol and caffeine I feel better for awhile. My worst times are in the mornings after breakfast and after taking the wellbutrin.  I to, think this whole condition was caused by the COVID vaccine. No one I have talked to believes me. At the moment I am not driving or going anywhere unless I have to. I use a cane which seems to help my balance.


   
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