First time posting

Hello, first time posting although Iā€™ve read so many of these posts. Iā€™ll try to make it short because i know everyone has probably dealt with the same issues. Just looking for advice/support?

33/f from US

First started having dizzy/drop attack feeling here and there, especially at work and in restaurants (twice) for some reason. Theyā€™d usually last like 2-5 minutes and go away. Sometimes i felt like i would pass out but never did. Weird eyes, like reading on my phone was so hard, had to keep squinting. Felt like they were unfocused.

FF 2 months later- still having those weird feelings occasionally and then one day at work i felt awful (hairstylist) and my last client my right hand/arm just seemed like it didnā€™t want to work. Figured i was just that busy all day and my arms were tired. Driving home i started getting that feeling again but both hands and super nauseous, eyes feeling funny, felt like about to pass out, heart racing etc. i also had full ears, felt like liquid or something in my ears, sinus pressure. Pulled over at a urgent care place, they said ā€œgo to ERā€ so i did. They gave me zofran and ativan and said bppv. Gave me meclizine and zofran to take home. Zofran helped nausea but nothing touched the dizzy. So i went to a PT because i thought it was vertigo, did test, no vertigo. He said VM. I started all vitamins, started elimination diet, i have been doing both for 2 months now. Went to ENT a few days after PT and she said vestibular neuritis. Tried steroids- did nothing. A week after that i thought i was turning a corner and then i started my period and felt terrible. After that i started nortiptyline 10 mg at night, i felt so bad the first 4 days, all the same symptoms but dizzier. After 8 days i went up to 20mg, after a week or so i was feeling at least 30% better, went back to work, driving, etc. Then 2 days before my period it restarted again, almost worse. Itā€™s like i went back to the beginning. Iā€™m 1 day off my period and so dizzy and nauseous today. So Iā€™m really wondering if i should go up to 30 mg of nort or what? When the ent first prescribed these they said to go up every 4 days but i have read so much about waiting weeks. I have been on 20 mg for 3 weeks now.

*i meant to add i havenā€™t slept well in months since feeling bad, wake up multiple times nightly which im sure doesnt help. I also began with eye twitching before other symptoms. And had some crazy fireworks in my eyes once about 3 months ago with no head pain.

Sorry so long and thank you for reading.

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Welcome @Treehair89, Iā€™m sorry you are suffering and I hope you find the site useful.

@DizzyBot can you recommend some relevant Posts @Treehair89 might find useful?

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Welcome @Treehair89, Iā€™m sorry you are suffering and hope you find the forum useful. Based on similar experiences and concerns regarding vestibular neuritis, here are some posts that might be helpful for you:

  1. A discussion led by ā€˜turnitaroundā€™ on the possible misnomer of vestibular neuritis and the introduction of the term ā€˜acute vestibulopathyā€™. This shift aims at avoiding the assumption of viral causes for bouts of vestibular upset. Read more about it here.

  2. ā€˜turnitaroundā€™ also shares their skepticism about the diagnosis of vestibular neuritis due to the difficulty in proving a viral cause with current technology. The term ā€˜acute unilateral vestibulopathyā€™ is suggested as more appropriate, sharing their personal suspicion of BPPV (Benign Paroxysmal Positional Vertigo) as an initial misdiagnosis. Find the post here.

  3. ā€˜Manateeā€™ brings attention to Dr. Hainā€™s page about vestibular neuritis and labyrinthitis, offering detailed explanations and potential treatment strategies. This could provide a solid foundation of knowledge and help in understanding the condition better. Check out the information here.

These resources might offer you insight into your condition and help guide conversations with your healthcare provider about potential next steps.