Altered For Life By The Virus A Better Treatment Plan Please Come Find Me
If you have read my blog, you know that this, is my great love in life! Playing, covering and writing music! Here’s my channel link. I’m still working on my channel even though I feel lousy physically doing it. I’m not going to allow a virus to take my joy. I cry tears over this new revelation and current state of being.
I’m guessing you have been hearing more and more about the long term effects of Covid? Well I just received a diagnosis that I’m still trying to process.
For four months now I’ve been trying to navigate dizziness and awful sensations that I am trying to overcome. I recently had a series an in depth testing. A work up called balance and VNG testing. Two hours of intense testing of my vestibular system. The center of balance that comes from the inner ear. These tests showed what a cat scan, an MRI, and a sinus cat scan did not… The truth about my condition and what has actually happened to me!
As a fully vaccinated person, I contracted Covid in late September. I had a lot of strange and horrible feeling symptoms that were hard to fully explain to the Dr.s that I saw.
I never had a fever! I felt like my cognitive and hearing functions were slipping away. I thought I maybe had a weird sinus or fungal infection of some sort. I was afraid to sleep because I felt so weird. I felt as though maybe I’d die in my sleep. My symptoms were so frightening to me! I felt completely out of it and dim. Strange sensations in my head, with extreme vertigo and burning all the way down my throat. A numb tingling in my ear that went all the way up my head. I thought I was having a stroke! I ran to the nearest mini hospital in my neighborhood in the middle of the night.
I was afraid to contract Covid (lol) so I went to a small urgent care hospital. Immediately I had a cat scan that came back as normal. For months I have looked for an answer and a resolve to these symptoms from physicians who looked at me with disbelief. My tests looked normal, my blood work all good… I would tell them my list of strange symptoms and they would treat me as if I was exaggerating or crazy. They would pass me on to other Dr.s . A lot of passing me around. I was so frustrated and so upset.
I started getting PTSD (Post traumatic stress) from seeing Dr. after Dr. With long wait times to get into one. My anxiety morphing with every Dr. I had to see. White coat syndrome with escalating high blood pressure at each visit. Maybe the blood pressure was actually a symptom of my ear dysfunction? I saw two different primary docs. Two different ENT docs and finally, a neurologist! They’d all look into my ear, nose and throat and tell me it all looked good. I had pain in my glands, my throat hurt, my ears felt full and hurt, numbness in my sinus cavity and my head was definitely not right. I couldn’t focus. Vertigo and dizziness consumed me.
I lived with extreme anxiety from being so dizzy 24/7 for months. Also anxiety from feeling unheard and unimportant to my doctors. I couldn’t focus on anything but the fear of the sensations and dizziness. I couldn’t drive or even navigate my phone when this first happened to me. I couldn’t keep my eyes open the dizziness was so bad! I think it took me 3 weeks before I could even try to drive. The helplessness of my health situation consumed me. It was brutal and terrifying!
The audiologist who did my balance testing told me the following… she said that they are starting to see a lot of post Covid + patients with the same kind of vestibular issues that I have. I never tested positive because all of the Dr.s I saw, told me I didn’t have Covid symptoms. I was told that I didn’t need to test for Covid. When I wasn’t getting better, I set up a test on my own that was came back negative. By the time I got tested though, it was too late for the test to be accurate… So fully vaccinated, I had a breakthrough case that has changed my life immensely. It has rocked my world literally!
The sad part is that the virus has attacked my right inner ear and my whole vestibular system. I have two separate vestibular issues! The first being benign proximal vertigo. (the spinning sensation kind of vertigo). That seems to be improving a lot. I no longer feel that my world is spinning. The other unfortunately, is much more devastating to me. The virus has left me with 96% damage to the nerves in my right inner ear. Knocking out my balance and leaving me with odd sensations when I move my head and walk. Also effecting my trigeminal nerve that is causing numbness and tingling. Essentially my #8 cranial nerve has been severely compromised. This has eliminated vital communication from my ear to my brain relating to spacial and balance issues. Resulting in unsteadiness, vertigo and a strange constant bouncing sensation when I move my head, walk and sing. I feel fortunate that I can hear from that ear! My hearing has been effected but I feel that is also improving as well.
I’m dealing with the effects of long Covid that are freaking miserable! This will not improve, my inner ear nerves are permanently damaged. No magic pill, no offer of surgery, just gone! I need specialized and specific therapy to retrain my brain to work around the loss of communication from my right ear. That is my only hope of regaining my balance and losing some of the bothersome sensations. Ugh! What a way to take someone down and out. It feels like biological warfare to me. Covid is smart in that it seems to seek out and attack weak areas in the body! As a child, I had a lot of ear infections. I’ve read that conditions in the human ear makes ears, a perfect host for Covid infection.
Long story short. I tried some vestibular therapy. I’ve done the Eply maneuver so many times I lost count. The therapist I was first referred to does many kinds of physical therapy. I just found out that I need a therapist that specializes in vestibular therapy. My prior therapy hasn’t helped me. Time and a great deal of trying to cope has. I walk a lot. Even at my dizziest, I was up and trying to navigate. As soon as I could, I started walking around the block. Now I’m up to walking about 3 miles 4 times a week. I do a ton of house and yard work. I’m doing my life and navigating but just not feeling good doing it! I try not to complain but the truth is, I still feel so strange and off. I’m trying to take my life back and reclaim it!
One of the most annoying and personally traumatic symptoms for me… I’m a musician. Sound has changed for me! For a time the vibration of music running through my head made me feel nauseous and anxious! I couldn’t even listen to music, the sensation was awful. That has gotten better! What has not resolved is the sensation of my own voice. When I sing, the vibration from my own voice makes me dizzy. I’m not going to quit singing- I’m just going to have to except that sensation! That realization has prompted deep sadness and many tears. A sense of depression looms.
I explained some of my concerns to my neurologist… I’ve been afraid to jog, making long road trips in a car and the thought of ever being able to fly in a plane… my Dr. said, “ sure, you’ll have symptoms but go ahead and jog, go on road trips and fly”. Then, he offered me anti anxiety meds lol… I declined. I’m not wanting to mask my symptoms, I wish to be rid of them. So, I’ve decided to live. Apparently what I’m left with isn’t life threatening.? Just damned uncomfortable! I hope that the new physical therapy I’m starting next week, can actually help retrain my brain to compensate for the deficit. Otherwise, I’m stuck like this! 😳 I don’t even want to entertain this thought. I’m choosing to be hopeful.
Damn you Covid! I had most likely the Delta variant.This new variant Omicron, is circulating and has my nearest & dearest loves miserable currently! Daughters Britt, (and her kids), Delcee and my ASU daughter Zoe all have it right now. Thankfully, they are all managing to get through it with flu like symptoms.
I’ll think long and hard before getting the booster vaccine. I have wondered if the Pfizer vaccine I received created this sh*! Storm of havoc in my head? The Dr.s won’t commit to saying otherwise. They say the Covid related issues they are seeing are rather new and a mystery. They are learning more and more as we all go along in this. They assume my situation resulted from having Covid and not the vaccine but they say not enough is known about the vaccine long term yet. So I’m left wondering if I dare get the booster.
If anyone reading this knows of any other treatment or hope for my condition, I would sure appreciate hearing from you!
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