Hoping this is the right place for me

Onset of symptoms and type: almost 7 months ago after receiving c19 vax. One very sudden episode of spinning vertigo followed by a panic attack. Following the initial episode I continued to experience a swaying sensation periodically.

Testing: Head CT, two brain MRI’s, Inner ear MRI, MRI of cervical/lumbar spine, multiple EKG’s, stress echo, holter monitor. Blood work has been done multiple times, ruled out Lyme disease, inflammatory markers, had a positive ANA titer which later turned negative. Eye exams which I now have reading glasses, and the optometrist noticed some nystagmus.

Treatment attempts: acupuncture. after the session the sensation changed from swaying to more of an elevator dropping/head bouncing. Currently doing vestibular therapy/neck therapy but I’m not really noticing much of a difference. Incorporating different supplements.

7 months after first episode these are my symptoms: fatigue, eye strain which is sometimes so bad that I feel like I physically can’t keep my eyes open because my brain is so exhausted. Major increase in anxiety/panic attacks. Ear fullness that comes and goes. Fuzzy feeling in head, pressure in back of head and through temples. Stiff neck. Sometimes certain head movements trigger dizziness but it’s not consistent, feeling like the floor and my body are bouncing up and down. Sudden movements sometimes make me feel like my brain and body are moving in different directions (swaying) Bright lights don’t cause pain necessarily, but I’ve noticed that I feel better in dark rooms, and first thing in the morning when waking up.

My neurologist told me that she has had patients in the past that after having a normal workup, their symptoms were components of migraine which led me here. She has talked about starting Nortriptyline, and wants me to do trigger point injections for my occipital neuralgia which may or may not be causing some of my symptoms.

I know this is a lot, and if you read all of this thank you!! Just looking for insight, as I truly feel so helpless and hopeless.

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Hey welcome, don’t despair. Takes a long time to start to debug these conditions. Out of interest is your ear fullness bilateral?

Also consider Amitriptyline as it is a stronger vestibular suppressant and may help the eyes more.

From your description of symptoms it sounds like you have most certainly hit in the right place. Welcome and bad luck for needing to tag along anyway. It happens to the best of us. Although regularly misdiagnosed due to ignorance of many doctors on the subject of vestibular conditions VM is not actually that uncommon. Sounds as if you have found a suitable neurologist. Nortriptyline is a commonly prescribed preventative as is its cousin Amitriptyline. I do hope you find whichever helpful. Many people do some improvement should put lay to the feelings of helplessness and hopelessness.

It usually is bilateral, but in general I notice more issues with my left ear. For example, I recently had a cold and my left ear had a much harder time popping and I felt more pressure on that side.

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Is it possible to have symptoms almost 24/7? My symptoms pretty much start right when I get out of bed in the morning, and get worse throughout the day. I’ll randomly get a reprieve for a few minutes, but not often at this point. I’m wondering if the near constant symptoms are kind of like lingering side effects of the migraines, with actual migraine flares here and there.

I have only had a few migraines and yet I had 24/7 vestibular symptoms for 3.5 years.

I still have permanent, persistent tinnitus.

Absolutely. In fact it stands as one main distinguishing feature of the condition. Read a few personal diaries. You could try mine. Symptoms vary but rarely without a few on any given days for years. You could think of yourself as ‘lucky’ - to a degree - if yours don’t start until you get up. Some people aren’t even free of them in bed. They occur 24/7 literally.

Always lots of discussion about this. Technically 24/7 symptoms are called ‘interactal symptoms’ though what good knowing that actually does I’ve often wondered. I’ve no answer to your wondering. Don’t think anybody has for sure. Lots of people start off with occasional symptoms that come along in active bouts and then periods, often long periods, of none at all then gradually the spaces between bouts are filled in first with more intermittent symptoms and then it goes 24/7. That’s what happened with me over a long period of 11/12 years maybe. Others simply experience vestibular symptoms alongside migraine attacks and that never progresses. Whatever the connection it seems controlling the migraines (if indeed one suffers migraines, not everybody does) seems to be the key to starting to gain some control over the vestibular issues however the latter tends to take much longer to settle generally.

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yes, hopefully you get a handle on it soon but it can last several years or more for some of us.

In my case I believe this was true. Others seem predominately related to the inner ear with migraines happening on the side.