Long Covid: Frightening Nightmares IRL

Getting your Trinity Audio player ready...

Reading Time: 4 minutes

Thanks to Long Covid, I’m reliving parts of my worst living nightmares: the nightmares of living with untreated Lyme disease and co-infections and the agony of my concussions all over again.

The similarities between Long Covid, late-stage neurological Lyme, and post-concussion syndrome are uncanny. Add breathing difficulties on top of neurological symptoms, and everything seems compounded.

I keep telling myself, these symptoms should feel more manageable this time around because I’ve had them before. But they feel much more challenging – I don’t have school or work to distract me from these terrifying symptoms. There’s no escaping them.

Last year, I powered thru these symptoms because I was focused on surviving my 40+ hours of work. I wasn’t living. I was surviving.

I was too exhausted to process symptoms. Too exhausted to acknowledge how they were negatively affecting my health. I was pushing, pushing, pushing. 

This year, I’m too sick to work, some days needing help just getting to the bathroom without falling.

The many neurological symptoms I had for years and had gone away with Lyme disease treatment have made a comeback thanks in part to Long Covid.

They wax and wane. The symptoms play tricks on my mind. Give me the hope that they’re gone. Bam! They strike with full force!

• 🔔 Swoosh! Buzz! Ding! That’s the ringing (tinnitus) in my ears.
• 💓⚡🔨🧊⛏💨 Throbbing, zaps, pounding, pressure, and ice picks thru my skull. 🤕 5 different types of headaches, just like in 2015. 
• 🤚 Worsening tremors that make my hands and fingers shaky and unsteady.
• 💬 Interrupted speech and stuttering. By the end of a long day, my talking becomes slurred.
• 🧠🌫Worsening brain fog, along with lapses of short-term memory.
• 👄👃 Tingling above my upper lip and sometimes below it, and on my nose.
• 🦵🙋‍♀️ Pins and needles randomly throughout my legs or arms.
• 🦶✋👂 There’s burning and swelling of my feet, hands, and ears not related to mast cell activation.
• 🦵🦶✋ Tiny muscle twitches felt on my face, hands, legs, feet, and toes. 
• 👁 Eye blurriness and strain. Pressure pain behind both eyes. 👀
• 💤 Sleep that is now interrupted by adrenaline surges or gasping for air.
• 😴The terrifying visual disturbances and hallucinations at the onset of sleep, just like after my concussion in 2019. (❂‿❂)( ﾟ∀ﾟ)

Most of these symptoms are symptoms I experienced after concussions or when I had untreated Lyme disease and other tick-borne infections.

With both concussions and Lyme disease, I experienced severe dizziness and balance problems. With Lyme, I had dizziness for 3 years before I was able to see a neurologist. They didn’t provide any help, just referred me for tests. It wasn’t until I started IV antibiotics in April 2018 that my dizziness began to get better a few months after. After my concussion in 2019, I had balance problems for 3-4 months after it. I couldn’t drive for a full month after my concussion.

Unlike Lyme, I’m not experiencing vertigo or temporary paralysis, and I’m grateful for that. With Lyme, I would have bouts of temporary paralysis every couple of months. Lasting several minutes, these episodes would temporarily make my muscles stiff, and I would be unable to move. I’d be locked and trapped in place. My face would get stuck, everything from my cheeks below would get pulled down, and I’d struggle to communicate.

My last temporary paralysis episode was in April 2020, about a month into my 1st Covid infection. I don’t think it was Lyme related because my last Lyme-related temporary paralysis was in mid 2019 right before going back on IV antibiotics.

I had concussions in 2011, and 2019. There might have been one in between those 2 but I’m having trouble with memory. After those concussions, I had severe neurological symptoms and gastrointestinal symptoms. My last concussion caused intense vertigo, and an escalation in my POTS symptoms. For now, I pray the vertigo stays away and my POTS doesn’t get worse.

It’s taken me over a week to compose this. It’s the same struggle I had with writing from 2008-2018.

My brain has previously recovered from these symptoms. I’m doing all that I can to help my brain recover again. I remind myself that this, too, shall pass. But I’m fearful. I’m afraid I need additional help. 

My own neurologist has recommended I get my Covid vaccine as soon as possible as it may help with symptoms. But I’m stuck. I need to wait 90 to 180 days since my re-infection to get the vaccine.

I’m hoping my doctor can prescribe hyperbaric oxygen therapy again. After my concussion in 2019, I did 20 sessions of HBOT, and they improved my symptoms by about 80%. I’m hoping and praying for similar results.

This is my living nightmare and it continues. I hope you don’t ever have to live your nightmares IRL. It’s terrifying to say the least.

I’m too exhausted to keep writing, but eventually when things look up, I would like to create an info graphic that lists all of the neurological symptoms of Neurological Lyme Disease, post concussion syndrome, and Long Covid. I think it’s important in seeing and showing the connections of post infectious illness with brain injury. Lyme did not just damage my joints, it also infiltrated my brain and wreaked havoc for years.

I could force myself to work on that content or I could force myself to rest. For now, I need to choose me and my rest.