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No Diagnosis in Sight

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 SM
(@merk65)
New Member
Joined: 8 months ago
Posts: 1
Topic starter  

I am posting on behalf of my mother, who has been suffering for 5 months. The medical system keeps railroading her into a "depression/anxiety" diagnosis, but she says she knows something is going on in her ears. Here is a summary of her journey written by her with my assistance. If anyone has had similar symptoms, please share your feedback and if you have been able to come to a diagnosis. We are desperate to get her back. 

 

Fall 2019

 First experience with “Vertigo.” Was not offered any advice or treatment options despite several visits to the ER. I was afraid I had a brain tumor or something seriously wrong. Lasted approximately 6 weeks, then spontaneously resolved. I did have an appointment with an ENT, who was not able to see me for 9 months. By then, he did not have any opinions because my symptoms had resolved.

 

2023

  Symptoms began as “vertigo,” similar to symptoms from 2019. Not “room spin” vertigo, but felt more as if I was rocking on a boat. Received no support from my PCP. In October, I saw a vestibular physical therapist who believed I had BPPV. She performed the Vannucchi Maneuver to correct. Symptoms did not resolve; she reevaluated 1 week later and confirmed that she no longer saw symptoms of BPPV and though that I had “Residual Dizziness.” She gave me home exercises and advice to help my brain reacclimate, and she also offered some anxiety coping techniques, as I was beginning to feel anxious about my unresolved symptoms.

Around the time of the PT treatment, my appetite became even less and headaches/head pressure became even more frequent and debilitating. The “dizziness” seemed less, or was perhaps overshadowed by my other symptoms. 

As the months have gone on, my symptoms have evolved to migraines/head pressure that wakes me up at night. Complete lack of appetite, I have to force myself to eat so that I don't starve; I have lost a significant amount of weight. Sometimes I have the sensation that fluid is coming out of my ears even though nothing is there. Sometimes I experience a "whoosh" or "aura" prior to an uptick in symptoms. I can't sleep and feel so tired and weak. I have no history of mental health issues, and while I do believe that I am currently suffering from anxiety and possibly even depression, I believe that these are a direct result of an undiagnosed medical condition and being sick for 5 months straight.

I have had every blood panel imaginable-all unremarkable

Brain MRI X 2- unremarkable

Inner ear MRI- unremarkable

Head CT- unremarkable

Hearing Test/ENT Consult- Unremarkable

 

I am trying to get into a neurologist currently. ENT referred me to neuro, but there is a neuro shortage in my area and the neurologist he sent the referral to declined the referral because he is unable to take any new patients.

 

Thanks for reading, and for any feedback you can offer!


   
Quote
(@chandra)
VeDA Staff
Joined: 2 years ago
Posts: 12
 

Hi SM,

I’m sorry that you’re mother has been having symptoms of vertigo and now migraines with now relief. Please read this article on Vestibular Migraine and see if your mother feels they align with her symptoms. VM can come with or without vertigo, and presents with or without a headache or migraine. Some people may experience head pressure, ear fullness.

Please email [email protected] and I would be happy to assist you further, try to locate a practitioner within your area.


   
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(@twosonstolove)
New Member
Joined: 5 months ago
Posts: 1
 

Hello.  I am new to Vestie's Village, and I am so sorry to read of your health challenge.  I have vestibular hypofunction on my right side due to right inner ear nerve damage which resulted from a cold this past year.  I am curious to know if your ENT did a VNG test....?   


   
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(@libbyboyd)
Active Member
Joined: 4 months ago
Posts: 40
 

It appears that you have done a significant amount of testing and sought help from various specialists, but have not yet received a definitive diagnosis or relief from your symptoms. Trying to see a neurologist sounds like a reasonable next step, and I hope you can find a specialist who can help you diagnose and relieve your symptoms. Insist that your health is a priority, and don't be shy about asking your doctors for additional help or opinions.


   
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