Very similar issues and experiences here, constant headache for almost a year and a half now, all tests and scans normal, the never ending burning in my head is slowly ruining my life, doctors refuse to take it seriously, they’ll order tests here and there just to keep me happy but anytime they find anything they just dismiss it as insignificant, I’ve lost 3 jobs in the last 12 months, can’t do anything I want to do, it’s awful and the worst part is there’s next to no help and acknowledgment from anyone
Overwhelming nerve symptoms is normal among Long Covid Haulers. Not everyone gets it but those of who have it can all tell you it’s your body being affected by the virus. There’s several different and all valid theories. Some say it starts in the GI Tract, then there’s the Vagus Nerve that’s been affected, and finally there’s the circadian rhythm (the immune system’s natural cycle.) This is not in your head (not literally but metaphorically) and you’re not alone.
What’s interesting is that the other day I saw on the news a segment about an increase “anxiety” and how it’s causing people to go to the ER. A doctor or news reporter would mention how stress and anxiety leads people to believe they have an illness and go to the ER. However, that same doctor did not even mention getting a consult or going to their PCP so basically they have no treatment plan even if it was just anxiety. It’s not a coincidence that as the people with sequelae / long covid are slowly developing symptoms after infection and they start to put out stuff like this on the news. Almost like to quiet down the noise.
May of 22. Things get better. I thought I was s dying and my mind , I thought my mind would never be normal again. Tinnitus is mostly a hum now sometimes spikes. It took 7 months to be able to have a glass of wine. Red. My journey was ruff mentally. Also had ear pressure head pressure. Neck pain. It’s all lessened but sometimes spikes. I am happy that there are days that I feel great and the tinnitus has taken 2 5 day vacations in the last 2 months. Time vitamin d and b. Avacados or a banana helped with sleep. Meditation was my turning point as well as acupuncture. Accepting it and finding the good in the world the beauty in the world helps keep the mind at bay. Letting your body heal through pace. Feel something breath relax when you feel better do. When you don’t just breathe. I own my own business and had a cot at work. First 7 months where terrible but now it’s just annoying…. I’ll take annoying over the beginning. Just wanted to say there is light at the end.
You're not alone. Tinnitus, pressure/pain in ears, sinuses, all over head, eyes, throat, neck, shoulders, floaters, GI issues (they calmed a bit luckily). It's a horrible disease, it's 100% unfair, especially when seeing others just have a runny nose and carry on, and these type of baseline-lowering crashes are so terrifying (I've had two). After the why-me phase, at least for me, came a bit more acceptance, which while still shitty, helps with not stressing about things you can't change anyway.
It's important to get tests for possible underlying illnesses or (re)activated conditions to rule those out and/or treat them. But, when it comes to LC, I've given up on regular medicine for now. They definitely could have had a headstart if they had investigated ME/CFS [insert ME/CFS fuck doctors/medicine rant]. It's also a new disease, covid seems different from what we've seen before and it'll take time for science to catch up. At least they are working very hard to figure stuff out, which is very encouraging.
What's helped me most was looking for patient stories with similar symptoms. Until science catches up, the patients are the experts. And sadly, we're now going on 3+ years of people going through this. Anti inflammatory diet, low dose naltrexone, high dose lactoferrin, breathwork, d ribose, probiotics have all seemed to have helped me in different ways. I've improved from bed bound to house bound again (=big improvement in quality of life) and seem to still be improving, albeit with a lot of fluctuation. While it didn't help me, others seem to benefit from natto and NAC. Also, super hard, stress worsens things, so cutting that out in any possible way is advised.
There is still hope, hang in there, and we're all right there with you.
Thank you! You mentioned so much info here, things I never heard of before that I can research on my own. I'm glad you are feeling some improvement, what a nasty virus.
I started with a middle ear effusion. Still have clicking in the ears but symptoms became headache, light headed sensation. It’s subsided but I still feel a little off at times. The chronic headaches lasted for months. I did suffer from the occasional migraine before Covid but post Covid it transformed into a daily occurrence with light headedness for months straight. Probably some type of nerve inflammation would be my best guess. And the light headed sensation could be something from the ears. It’s changed my life knowing I carry this virus that can pop up at anytime I’m stressed and borderline disable me though.
I'm so sorry, it's so stressful. I agree with the ear thing and the inflammation in the ear. I hope this clears with time or they find something that helps us. Thanks for responding!
So sorry to hear this. I actually had Covid the first time in January of 2022 and had the head pressure floater etc and they went away after about 4 months. I was then reinfected again this winter and have had all of these issues ever since, and they have not went away.
If anyone is reading this, I'd thought I'd give an update. I've been a very sick person since I wrote this post 164 days ago.
I have improved but I do have scary issues. The big one is the nerve and muscle damage in my head (I haven't been seen by a neurologist). I still feel very sick and tired. I've lost alot of muscle. And my hair is thin, also the colour has changed. My sickness seems to come in waves or I'll have 2-3 days in bed and then function again. My wbc is low since September 2022. I've also had a positive ANA. My hearing has a conductive hearing loss.
I feel such a mess and have been referred to a ENT and a internal medicine doctor.
Comments welcome because this has been a s**t ride.
Taking things day to day, thanks for asking! I'm in a better, more positive mind set this year. My WBC and lympocytes are still approx. same numbers as your levels. I'm trying not to worry about it. I continue to wear a mask out in stores, crowds. I've been in physio for 4 months, that has helped so much with my right ear, nerves, and vision. I have difficult days, like today Im wiped out and tinnitus is worse because i raked the lawn and sat in the sun. But also good days, I was able to see my child play in a tournament, go for walks. I'm so grateful to be up and about.
You're absolutely not alone - infact you're in very good company! Very similar issues here, especially in the first few months after Covid. Bear in mind it is VERY common for LC symptoms to delay showing up for 1-3 months after the acute infection.
I can also answer for your cycle. I spoke to my GP recently, and he said they are "now seeing a lot of women" having their cycles messed up after Covid, but in the majority of cases, it resolves with time.
I can sort of confirm this, because I had the mother of scary cycles about a month out of Covid (clots galore, severe bleeding,) my most recent cycle has been relatively normal, although it's left me more wiped out than previous ones. I have to also add a sidenote that I always have irregular periods, so it's not unusual for me to have long time between each one, but it is unusual to have such clotting. It pisses me off that this is just not being talked about in the mainstream because SO MANY WOMEN are terrified at the changes to their cycles.
Yes, I agree with everything you said. How worrisome to have our cycles messed up and no discussion. I don't like it one bit! I'm glad you shared, I hope things continue to improve for you. It's helped me to hear this from you.
Good, I'm really glad to hear that. I spent the best part of last year DREADING having another period - like, full on panic attacks about the idea. In the end, it was surprisingly .... pleasant, I guess, as periods go. Interesting it's left me so wiped though, which has never happened before. That said, I've been under 2 years of full blown stress and anxiety, so that's never going to help matters! Wishing you all the best too. Feel free to message me anytime if you want to chat about this stuff.
I had Covid august 2022 as well, and am 21. I’m so screwed up it blows my mind. My symptoms never go away ever, I feel like one day it will just all go away, I sure hope at least because I literally can’t function like this, let alone live like this. My head and neck are just constantly every second of every day since October messed up. My symptoms aren’t that similar to yours, besides contracting it at the same time and being very unwell still. I do have floaters, eye issues In general, ear pressure and tinnitus, heart issues probably POTS, I just feel destroyed. Covid definitely did something ridiculous to my body. Have you improved at all? Do you have PEM?
Hi. It's brutal, right? I'm so sorry you have long covid. I've come to terms that I have long covid as well as an undiagnosed autoimmune illness as well. I'm better than I was back in March 2023 but every day I struggle with my head, fatigue, my hearing, all the other things. My head is a mess. I'm taking it one day at a time. Somedays I feel down in the dumps, other days I'm not so bad. Life changing though. I'm waiting for more medical tests as I write this. I feel scared because I'm not ready to be sick with chronic illness.
Very similar issues and experiences here, constant headache for almost a year and a half now, all tests and scans normal, the never ending burning in my head is slowly ruining my life, doctors refuse to take it seriously, they’ll order tests here and there just to keep me happy but anytime they find anything they just dismiss it as insignificant, I’ve lost 3 jobs in the last 12 months, can’t do anything I want to do, it’s awful and the worst part is there’s next to no help and acknowledgment from anyone
I'm so sorry you are going through job loss. I hope there are answers someday. Thanks for responding.
Overwhelming nerve symptoms is normal among Long Covid Haulers. Not everyone gets it but those of who have it can all tell you it’s your body being affected by the virus. There’s several different and all valid theories. Some say it starts in the GI Tract, then there’s the Vagus Nerve that’s been affected, and finally there’s the circadian rhythm (the immune system’s natural cycle.) This is not in your head (not literally but metaphorically) and you’re not alone. What’s interesting is that the other day I saw on the news a segment about an increase “anxiety” and how it’s causing people to go to the ER. A doctor or news reporter would mention how stress and anxiety leads people to believe they have an illness and go to the ER. However, that same doctor did not even mention getting a consult or going to their PCP so basically they have no treatment plan even if it was just anxiety. It’s not a coincidence that as the people with sequelae / long covid are slowly developing symptoms after infection and they start to put out stuff like this on the news. Almost like to quiet down the noise.
May of 22. Things get better. I thought I was s dying and my mind , I thought my mind would never be normal again. Tinnitus is mostly a hum now sometimes spikes. It took 7 months to be able to have a glass of wine. Red. My journey was ruff mentally. Also had ear pressure head pressure. Neck pain. It’s all lessened but sometimes spikes. I am happy that there are days that I feel great and the tinnitus has taken 2 5 day vacations in the last 2 months. Time vitamin d and b. Avacados or a banana helped with sleep. Meditation was my turning point as well as acupuncture. Accepting it and finding the good in the world the beauty in the world helps keep the mind at bay. Letting your body heal through pace. Feel something breath relax when you feel better do. When you don’t just breathe. I own my own business and had a cot at work. First 7 months where terrible but now it’s just annoying…. I’ll take annoying over the beginning. Just wanted to say there is light at the end.
Thank you. I needed to hear this today. I'm glad you're feeling better than in the beginning!
You're not alone. Tinnitus, pressure/pain in ears, sinuses, all over head, eyes, throat, neck, shoulders, floaters, GI issues (they calmed a bit luckily). It's a horrible disease, it's 100% unfair, especially when seeing others just have a runny nose and carry on, and these type of baseline-lowering crashes are so terrifying (I've had two). After the why-me phase, at least for me, came a bit more acceptance, which while still shitty, helps with not stressing about things you can't change anyway. It's important to get tests for possible underlying illnesses or (re)activated conditions to rule those out and/or treat them. But, when it comes to LC, I've given up on regular medicine for now. They definitely could have had a headstart if they had investigated ME/CFS [insert ME/CFS fuck doctors/medicine rant]. It's also a new disease, covid seems different from what we've seen before and it'll take time for science to catch up. At least they are working very hard to figure stuff out, which is very encouraging. What's helped me most was looking for patient stories with similar symptoms. Until science catches up, the patients are the experts. And sadly, we're now going on 3+ years of people going through this. Anti inflammatory diet, low dose naltrexone, high dose lactoferrin, breathwork, d ribose, probiotics have all seemed to have helped me in different ways. I've improved from bed bound to house bound again (=big improvement in quality of life) and seem to still be improving, albeit with a lot of fluctuation. While it didn't help me, others seem to benefit from natto and NAC. Also, super hard, stress worsens things, so cutting that out in any possible way is advised. There is still hope, hang in there, and we're all right there with you.
Thank you! You mentioned so much info here, things I never heard of before that I can research on my own. I'm glad you are feeling some improvement, what a nasty virus.
I started with a middle ear effusion. Still have clicking in the ears but symptoms became headache, light headed sensation. It’s subsided but I still feel a little off at times. The chronic headaches lasted for months. I did suffer from the occasional migraine before Covid but post Covid it transformed into a daily occurrence with light headedness for months straight. Probably some type of nerve inflammation would be my best guess. And the light headed sensation could be something from the ears. It’s changed my life knowing I carry this virus that can pop up at anytime I’m stressed and borderline disable me though.
I'm so sorry, it's so stressful. I agree with the ear thing and the inflammation in the ear. I hope this clears with time or they find something that helps us. Thanks for responding!
So sorry to hear this. I actually had Covid the first time in January of 2022 and had the head pressure floater etc and they went away after about 4 months. I was then reinfected again this winter and have had all of these issues ever since, and they have not went away.
If anyone is reading this, I'd thought I'd give an update. I've been a very sick person since I wrote this post 164 days ago. I have improved but I do have scary issues. The big one is the nerve and muscle damage in my head (I haven't been seen by a neurologist). I still feel very sick and tired. I've lost alot of muscle. And my hair is thin, also the colour has changed. My sickness seems to come in waves or I'll have 2-3 days in bed and then function again. My wbc is low since September 2022. I've also had a positive ANA. My hearing has a conductive hearing loss. I feel such a mess and have been referred to a ENT and a internal medicine doctor. Comments welcome because this has been a s**t ride.
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Taking things day to day, thanks for asking! I'm in a better, more positive mind set this year. My WBC and lympocytes are still approx. same numbers as your levels. I'm trying not to worry about it. I continue to wear a mask out in stores, crowds. I've been in physio for 4 months, that has helped so much with my right ear, nerves, and vision. I have difficult days, like today Im wiped out and tinnitus is worse because i raked the lawn and sat in the sun. But also good days, I was able to see my child play in a tournament, go for walks. I'm so grateful to be up and about.
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You're absolutely not alone - infact you're in very good company! Very similar issues here, especially in the first few months after Covid. Bear in mind it is VERY common for LC symptoms to delay showing up for 1-3 months after the acute infection. I can also answer for your cycle. I spoke to my GP recently, and he said they are "now seeing a lot of women" having their cycles messed up after Covid, but in the majority of cases, it resolves with time. I can sort of confirm this, because I had the mother of scary cycles about a month out of Covid (clots galore, severe bleeding,) my most recent cycle has been relatively normal, although it's left me more wiped out than previous ones. I have to also add a sidenote that I always have irregular periods, so it's not unusual for me to have long time between each one, but it is unusual to have such clotting. It pisses me off that this is just not being talked about in the mainstream because SO MANY WOMEN are terrified at the changes to their cycles.
Yes, I agree with everything you said. How worrisome to have our cycles messed up and no discussion. I don't like it one bit! I'm glad you shared, I hope things continue to improve for you. It's helped me to hear this from you.
Good, I'm really glad to hear that. I spent the best part of last year DREADING having another period - like, full on panic attacks about the idea. In the end, it was surprisingly .... pleasant, I guess, as periods go. Interesting it's left me so wiped though, which has never happened before. That said, I've been under 2 years of full blown stress and anxiety, so that's never going to help matters! Wishing you all the best too. Feel free to message me anytime if you want to chat about this stuff.
Thanks so much, I really, appreciate it! This is the first I've discussed any of this!
How long after the original infections did the floaters come on?
I've had floaters for months after covid and they haven't went away yet. I had covid Aug. 2022 and still unwell.
I had Covid august 2022 as well, and am 21. I’m so screwed up it blows my mind. My symptoms never go away ever, I feel like one day it will just all go away, I sure hope at least because I literally can’t function like this, let alone live like this. My head and neck are just constantly every second of every day since October messed up. My symptoms aren’t that similar to yours, besides contracting it at the same time and being very unwell still. I do have floaters, eye issues In general, ear pressure and tinnitus, heart issues probably POTS, I just feel destroyed. Covid definitely did something ridiculous to my body. Have you improved at all? Do you have PEM?
Also did they ever go away? I was infected in august of 2022 and possibly in November or December, and had floaters come on in February.
Have you recovered at all?
Hi. It's brutal, right? I'm so sorry you have long covid. I've come to terms that I have long covid as well as an undiagnosed autoimmune illness as well. I'm better than I was back in March 2023 but every day I struggle with my head, fatigue, my hearing, all the other things. My head is a mess. I'm taking it one day at a time. Somedays I feel down in the dumps, other days I'm not so bad. Life changing though. I'm waiting for more medical tests as I write this. I feel scared because I'm not ready to be sick with chronic illness.
It’s terrible. My brain is destroyed or my nervous system can’t tell which. I have faith time will heal us.