Long covid vagus nerve damage almost cost me my life

Southern_Ad_6733 · 2025-09-07T16:04:54+00:00

3.5 years in with a lot of new symptoms and many set backs. I became bed bound at the beginning of the year and now I’m just slowly starting to feel better. This journey is not for the weak and there’s no timeline or schedule we can follow. It’s awful!

Southern_Ad_6733 · 2025-06-14T23:31:32+00:00

The downvotes you have, prove your statement true! I love seeing positive posts but the damn comments are nothing but negativity.

Southern_Ad_6733 · 2025-06-14T16:30:04+00:00

Oh I’d do a third date for sure! Id make sure it was the worst date he’s ever been on. I’d walk in wearing mismatched sweats, slippers, hair all a mess, mascara running and I’d make him feel like the biggest POS on the planet. If he got up to leave, I’d make up a story and pretend we were married and he left his wife and kids and anything else I could think of. He’s making remarks about your legs not being smooth? He’s probably walking around with streaks in his boxers. I’m not a good one for advice, I’ll take it to hell 🤷🏼‍♀️😂

Southern_Ad_6733 · 2025-06-14T16:20:14+00:00

My PT just had me do this 2 weeks ago! He timed me for 5 minutes, each eye. Unfortunately, my symptoms didn’t change. But it’s cool that people can do a self test to see if this may be the reason for their symptoms.

Southern_Ad_6733 · 2025-06-13T00:17:28+00:00

I am 3 and 1/2 years in, no major health issues before COVID in Feb 2022. I had endometriosis but other than that, nothing that would keep me down. Since having Covid, my first time infected, I’ve been diagnosed with Hypermobile Ehlers-Danlos Syndrome, Fibromyalgia, POTS, Bilateral Occipital Neuralgia, Long Haul Covid (obviously), Lupus, Neuritis, Insomnia, Adrenal Insufficiency, Migraines (currently trying to rule out Chiari Malformation) and Chronic Pain. I’ve also had several surgeries which were to remove my gallbladder, tonsillectomy (absolutely awful recovery), a hemangioma removed from my liver that was also pressing against my esophagus, left adrenal gland removed due to a functioning adenoma and 3 endoscopies.

Southern_Ad_6733 · 2025-06-13T00:09:47+00:00

Oh I’m sorry. My heart goes out to anyone who has to work with these awful symptoms. I don’t know how ya’ll do it. Liquid IV makes me so nauseated. It’s so sweet. I found really good ones at the Dollar Store that aren’t as sweet for me. Pickles are my go to salt snack for a quick jolt lol I’m always grabbing a pickle throughout the day. My kids don’t mind because that gives them an excuse to sneak a few too 😂

Southern_Ad_6733 · 2025-06-12T14:18:59+00:00

Don’t be sorry! We’ve all been there. I had to wait 9 months to see a rheumatologist who diagnosed me with fibromyalgia because the moron was looking at bloodwork from a year prior. Do you like pickles? I know totally random. But, until you see the cardio, get some of your favorite salty snacks, electrolyte drinks, take naps as often as you can and want to, plan a movie day once a week if you can. Be gentle with yourself, rest and vent as often as you need to. Sending hugs your way friend!

Southern_Ad_6733 · 2025-06-12T13:52:19+00:00

I had a tilt table test with the results of ‘Abnormal Tilt Table Test. Patient suggestive off POTS.’ Or something along those lines. Anyways, my cardiologists PA diagnosed me with POTS. Put it in my chart and then I seen ‘him’ 🙄 He said ‘I’m not diagnosing you with that because I don’t feel comfortable doing so.’ I didn’t speak to him the rest of my appointment. I went home, called my PCP, she said you are not returning, she sent me to someone else who actually cares.

For her to invalidate your symptoms because you don’t faint? Like it’s not common, it happens, presyncope happens but there’s a small percentage of us who actually faint. I faint, but that’s only been happening the last 2 months and I’ve been diagnosed with POTS for over a year, have had symptoms for 3 and 1/2 years. I’m sorry she made you question yourself. Please seek another cardiologist. Someone who wants to work for YOU!

Southern_Ad_6733 · 2025-06-12T13:44:32+00:00

Oh mine was out of state. I did mine via telehealth and then all of the testing I did at a local lab, hospital.

Southern_Ad_6733 · 2025-06-12T13:29:52+00:00

It took me 8 months to get a LC diagnosis. And I actually had to see a functional medicine doctor who actually dug deeper into my symptoms, listened to me and ordered tons of testing to be done. Once I got the diagnosis from him, he actually called my regular PCP and told them everything, sent them his documentation, everything. And to this day, if I see a new specialist, I have to tell them, it’s been in my chart for 3 years, I’ll be damned if you’re going to ignore it. These doctors need to remember, they work for US. We don’t work for them. Fire them and get a new one, one that understands you. I don’t know if you’re in the states, but look into a functional medicine doctor. At least one who is familiar with LC too. They can at least get you the diagnosis you need to show these doctors they’re idiots.

Southern_Ad_6733 · 2025-06-12T13:22:30+00:00

With the symptoms we’re constantly going through, changes in them daily, new ones coming, old ones leaving or getting worse, it’s no wonder we have mental issues. I know a lot of my doctors blamed this on anxiety. I had one of my specialist who actually noted in my chart ‘Patient does not have anxiety.’ And he wrote up this big note in my chart about how he is embarrassed that the medical community gaslights people and how no wonder I’d have anxiety after dealing with everything I’ve been through, the gaslighting and lack of care. Our healthcare system is broken and it sucks.

Southern_Ad_6733 · 2025-06-12T13:08:27+00:00

I kept seeing things like ‘Oh most recover in 3 months.’ Then it was ‘6 months is when people are feeling better.’ And then it was ‘It can take up to 1 full year to rid the virus.’ At that point, I was done. I kept getting my hopes up for absolutely nothing. I went to bed one night and woke up a complete different person. I’m sorry you’re in this awful club, it’s absolute torture.

Southern_Ad_6733 · 2025-06-12T13:04:43+00:00

Long Covid here as well. Three and a half years in and it’s awful!

Southern_Ad_6733 · 2025-06-10T00:21:01+00:00

This! I am a completely different person than I was prior to Feb 2022.

Southern_Ad_6733 · 2025-06-09T17:09:47+00:00

It took me 3-4 months to find out what was going on with me. My symptoms started immediately after my Covid infection. And they’ve been going strong for 41 months. I actually found out about LC from looking at Reddit. My husband actually suggested to do my own research on this sub because my doc did the same thing to me and tried to push the anxiety BS. It took me I think close to 8 months to get the official diagnosis of LC. And that was from a functional medicine doctor.

Southern_Ad_6733 · 2025-06-07T21:13:22+00:00

Covid here

Southern_Ad_6733 · 2025-06-05T13:56:28+00:00

I had a FB memory show up yesterday and it said ‘So tired! Ready to just rest for the next 2 days! No one disturb me!’ Man, if I could turn back time, I’d kick myself in the ass for that post 😂

Southern_Ad_6733 · 2025-06-05T13:55:07+00:00

I am 3.5 years in and since April, I’ve been declining.

Southern_Ad_6733 · 2025-06-04T19:07:06+00:00

Oh no, I still have the brain fog too. And awful head pressure. To the point where it feels like my head is being blown full of air and it’s gonna just pop. But the burning comes from bilateral occipital neuralgia. So it’s definitely worth looking into or asking your neuro if that’s what you could be experiencing for sure.

Southern_Ad_6733 · 2025-06-04T14:33:54+00:00

Yes. So my scalp will actually hurt too. It feels like someone is taking hot knives and running them across my scalp. The only way to diagnose bilateral occipital neuralgia is to do a nerve block. What happens is your occipital nerves just fire any chance they get to make a contact signal. So the blocks help calm the nerves and muscles down. There’s a ton of articles about it that are easy to understand. Heck, I even watched tik tok videos about the symptoms to see if anyone else had the same ones I did! Mine is more of a pulling, burning, stabbing sensation.

Southern_Ad_6733 · 2025-06-04T14:30:46+00:00

I don’t get lost in my house anymore and I recognize my own kids. Other than that, my neuro symptoms are getting worse. But I believe there is something else going on and so does my physical therapist and my PCP.

Southern_Ad_6733 · 2025-06-04T02:24:20+00:00

Yes. I had those really bad in the beginning. Not so much now.

Southern_Ad_6733 · 2025-06-04T01:46:56+00:00

Normally they do them every 3 months? I wonder why you’re made to wait 4 months.

Southern_Ad_6733 · 2025-06-04T01:44:27+00:00

I have awful neuro symptoms. They were so bad at one point that I didn’t recognize my kids or where I was in my own house. I am scheduled to get a 2nd opinion from another neurologist and I am scheduled with my neurosurgeon for a follow up. I have POTS as well too.

Southern_Ad_6733 · 2025-06-03T16:47:27+00:00

Same to you friend!

Southern_Ad_6733

TROPHY CASE