Introduce yourself

Jun 29

Replying to

Hi Kerry (I'm guessing!)

Sorry to hear you're in this predicament, but glad to hear you have the support of your mum. It's so important. I also got COVID in July 2022 and ended up with long-term neurological symptoms (I posted my story below). It's really tough to accept. I'm rebuilding my life around this new normal, but still hoping that I'll get better over time. I only got to see a good neurologist for the first time recently (saw one useless one before) and that was very validating as she clearly recognised the physical impact of COVID on the brain. They just don't seem to know why or how it causes the damage.

There's not much ongoing discussion here anymore but there email notification does go out when someone posts. All the things different people have found might help are also already in the posts below. If you are up to reading, I still recommend the book I mentioned below, How To Be Sick by Toni Bernhard, for coping strategies.

Wishing you all the best.

Sophie

Alan

Mar 10

Hi Deb,

Sorry to hear about your struggles. I suffered from Long COVID symptoms for a number of months. Mine were the heart and lungs related. I managed to resolve my symptoms by taking anti platelet medication – Clopidogrel. I took it based on some successful trials and hypothesis that the symptoms were related to microclots that prevented oxygen supply to the affected parts of the body. The medication is fairly safe and for me was free from any side effects. It took about two weeks to start noticing improvements. I took the medication for two months and after that I was free of any Long COVID symptoms.

I hope you will find something that will resolve your issues.

Best wishes

Alan

Deb

Mar 11

Replying to

That sounds amazing Alan,

So glad to hear you’ve got rid of long Covid. I wonder if micro clots are a cause of the reduced blood flow to the brain and may be an option for me.

Best wishes to you too!

Deb

Mar 10

Hi all,

I’m not sure if this group is still active so I won’t bother writing too much.

I’ve had long Covid almost two years- previously healthy 44 year old full time senior manager working in SA Health.

I continued to work for 15 months until I could no longer due to fatigue and cognitive issues.

It’s been devastating. I got a spect brain scan results this week showing severe blood flow issues to several parts of my brain… but no advise on what to do. Neurologists have a 6-9 month waiting list. This feels more urgent than that…

Anyway I’ll see if anyone responds.

Wishing everyone as much calm and peace as possible

Deb

Mar 23

Replying to

The problem is that it is very individual and depends on your symptoms. For me, I have found that Low Dose Naltrexone and Serotonin both help with brain fog and fatigue.

Mar 23

Replying to

You're totally right. It's interesting hearing what works for people though. I have tried LDN but unfortunately no dice for me. I did have about ten days feeling better on an SSRI once, but it didn't last. Clues everywhere... Thanks again!

Mar 23

Replying to

How long did you get LDN for? I had to very slowly increase the dose as I had some sleep disruption etc. In fact I'm still slowly increasing. The effect seems to increase over time. They say to stay on it for about 8 weeks if testing it.

You could also try the supplement COQ10. I tried it but it's hard to distinguish the effect from the other meds I was trying.

Have you had a test for POTS?

Jan 24

Hi Sophie

Thank you for sharing your experience here. The group isn't really active anymore and like you I'm not a part of a Facebook group.

Your neurological symptoms sound similar to some of mine. I've had strange head symptoms too. At times it's like my brain is boiling, and other times there's a strong sensation of pressure, sometimes I also have severe pain or an internal vibration. I've also been scanned and told that everything is normal despite it feeling anything but normal. It's distinctly different to anything I've ever felt. I've also had migraines but these seem to have settled, at least for now. I'm sorry to hear of someone else suffering this way. It's so debilitating and there doesn't seem to be any sense to the underlying issues at all in my local medical support. I just get quizzical perplexed looks when I seek help. Medications don't seem to help. I've found using a gel ice pack has been the only useful option.

I recently came across an article on covid headaches that is the most I've been able to find on the topic, here's the link:

How COVID-19 headaches are different from others—and how to manage them

I agree my own symptoms aren't fully explained as Chronic Fatigue, there's a lot more going on in my case.

I hope the international medical professionals and researchers can solve the puzzle that is long-covid before long as I worry about longer term impacts of reduced quality of life and life expectancy given my brain seems to be implicated.

Australia could do a lot more to help us all. There were a couple of articles published in ABC news recently that raised some very relatable valid points and significant concerns. They're worth reading, here's the links:

Scientist Brendan Crabb broke his own rule and caught COVID. But this is how he had avoided it

'This is the end of the relationship': The marriages under strain from long COVID

Perhaps our comments might revive the group and offer some more support. Even if it's just us talking to one another here.

Sending kind wishes 😌

Jan 23

Hi all,

My name is Sophie, I'm in Hobart.

Despite my best efforts I contracted COVID in July 2022. I was isolated in a hotel room. During the acute phase I was very sick but not hospitalised. Most acute symptoms cleared up within a couple of months.

By the end of July 2022 I had noticed an ongoing neurological symptom, which is very difficult to describe. It's a permeating burning sensation with some pressure sensations also. It feels like my brain is filled with hot smoke. I've developed pulsatile tinnitus - hearing my heart beat in my ear. Sometimes I experience a feeling like temporary deafness. Sometimes I experience temporary blackening of my vision. When I reach for words, facts and memories, they are not available.

The symptoms can be reliably triggered or made worse by concentrating on a mental task, doing cardio exercise at a high heart rate, doing cardio exercise at a low heart rate for more than about fifteen minutes, and doing any kind of inverted posture where my torso is higher than my head. Eating sweet food also seems to have a negative impact.

CT and MRI scans of the head and neck have not shown anything. Painkillers are ineffective, and I've also tried a variety of other psychotropic medications with no success. I'm currently taking a barrage of supplements from n-acetyl cysteine to creatine - but I can't say that these are having any impact either.

I tried to continue working but had to stop completely in September 2023. When I compare my situation to one year ago it has clearly deteriorated significantly, which is dispiriting.

I feel strongly that this condition is not the same as chronic fatigue syndrome. The problem is isolated to pain and pressure in my brain. I do not feel tired, except insofar as being in so much pain is exhausting. I feel as though my body would love to go out into the world and do the things I used to do, but I know that the impact on my brain will be too high. There is some similarity with post-exertional malaise in that the pain is reliably and proportionally worse if I do too much. By that I mean if I do a little too much, the pain is worse for several days, and if I do much too much, it is worse for weeks.

Needless to say, the impact of this illness on my previously happy, healthy life has been profound. I have learned a lot. I would recommend Toni Bernhard's book How To Be Sick as an option for people looking for ways to cope with such unwelcome changes.

I've come to this forum as I don't have social media accounts and I would be interested to hear if anyone has experienced similar symptoms (and of course - any treatments or stories of recovery!).

Jan 24

Replying to

sorry, I didnt use the reply option to respond to your post. See my separate post above.

Edited

www.nationalgeographic.co.uk

Jan 24

Replying to

Hi Sophie

Thank you for sharing your experience here. The group isn't really active anymore and like you I'm not a part of a Facebook group.

I recently came across an article on covid headaches that is the most I've been able to find on the topic, here's the link:

How COVID-19 headaches are different from others—and how to manage them

Experts say three types of headaches can occur with coronavirus infection. Figuring out which one someone has is key to finding the right treatment.

I agree my own symptoms aren't fully explained as Chronic Fatigue, there's a lot more going on in my case.

www.abc.net.au

Scientist Brendan Crabb broke his own rule and caught COVID. But this is how he had avoided it

Three of Australia's leading COVID-19 experts share their personal safety strategies and reflect on what must happen if we're to blunt the growing health crisis the pandemic is causing — and prepare for the next one.

www.abc.net.au

'This is the end of the relationship': The marriages under strain from long COVID

Long COVID is not just destroying people's health. Behind closed doors, in homes across Australia and abroad, it is irreversibly changing relationships — sometimes for the better, too often for worse.

Perhaps our comments might revive the group and offer some more support. Even if it's just us talking to one another here.

Sending kind wishes 😌

Jan 24

Replying to

Thanks for your reply. It's a shame the forum isn't more widely used - it could be a useful resource for researchers if it were more organised. It seems wrong to leave it in the hands of the social media companies.

I know what you mean about it being distinctly different from anything you've ever felt. I've been using the word pain as it seems to be all anyone understands - but it's completely unique sensation. I have had migraines in the past but this is different, and hasn't triggered any. Amitriptyline has had no impact.

I have been using cold compresses on my neck too. I'm not sure if it provides relief or just some distraction. But it does seem to fit with my theory that my problem is in some way related in to blood delivery to the brain.

One other thing that weirdly helped once was spending an hour in a magnesium salt float tank. I went in with my brain burning and came out better. I wish I knew why. Unfortunately, it only worked the once. Other times it made no difference and once it made the sensation quite amazingly worse!

It's just so frustrating that nobody seems to know or have any interest in how to interrogate it beyond the blood tests and brain imaging. I waited months to see a neurologist and all he said was that the scans would have shown anything 'insidious'. Well, having a burning brain that renders you unable to go about your life is insidious. Like you I think about the long-term impacts and whether the risk of developing conditions like Parkinsons or dementia will be higher. I hope that funding for research will keep coming.

I thought the ABC article on relationships was pretty insightful. It's certainly been tough on my situation. Not least because I don't feel like I am the same person anymore.

Cheers to the day we never have to think about long covid again ;)

Sophie

Nov 27, 2023

Hello I have been living with long covid since first getting covid as a healthcare worker in Melbourne in early 2020, pre-vaccines being available. I have had numerous hospital emergency dept visits due sudden onset adverse reactions following covid and to each of my vaccinations, especially since my second case of covid in Dec 2021. These have been explained to me as over exhuberant immune responses that triggered abnormal gynocological, neurological, kidney, heart, bowel, liver functioning among other things. Most of my symptoms come in cycles. Each cycle of gradual improvement over months I become hopeful that my body is finally recovering only to have another cycle of symptoms flare up again within weeks. My symptoms are severe and debilitating across my nervous system, cardiac, endocrine, vascular, digestive functioning. I havent slept well for years due to adrenaline surges, brain vibrations, temperature fluctuations, headaches, nightmares, vertigo, joint and tissue spasms and digestive pains that wake me throughout the night resulting in severely fragmented sleep. My body feels stuck in sympathetic overdrive. I have been diagnosed with dysautonomia, MCAS, heart failure, sudden onset menopause, sudden onset liver damage, severe depletion of many essential vitamins - B12, D, iron, increased cholesterol and blood sugar levels with no prior history or preexisting health issues. My experience in help seeking has been exhausting and disparraging. Many doctors have denied my symptoms are long-covid along the way, then only refer me to allied health support despite significant indicators that my body is malfunctioning physiologically, and continue to instruct me to make personal lifestyle choices for symptom relief in place of medical investigations, screening or care based soley on my self-report descriptions. I have been trialled on a myriad of off-label medications resulting in symptoms worsening due to added side-effects. I have engaged in multiple long-covid clinic programs with little to no improvement and many times further setbacks. I continue to feel gaslit, discriminated against and forgotten by goverment, community, colleagues and my friends.

I have struggled to maintain anything that resembles my former life pre pandemic. I have gone from a senior fulltime employee with post-graduate qualifications gained while working, a rich and full life where I enjoyed work, family, friendships, travel, volunteering, hobbies, ran and worked out most days to being home bound and barely able to work 10-15 hours a week, go for a few short walks, tend to basic domestic life and spend time with family. I was forced to resign from my full-time employment, many of my friendships have gone adrift as I am unable to socialise easily and I have had to adjust all my life goals and aspirations due to long-covid limitations.

The waves of grief with the loss of my former lifestyle, limited capacity to work, lost hope, meaning and purpose, sparse remaining friendships, lack of targeted healthcare and repeated symptom flares is indescribable and not well understood or acknowledged by the community or healthcare.

I am hoping this community is still active and can offer a source of understanding and judgement free support.

Jan 23

Replying to

Hi Insidemymind,

I'm new to this forum too and don't have any social media. I've posted my situation in a new post.

I also feel the waves of grief you describe. I feel waves of intense anger at my situation, and at the disinterest of the medicos I have seen to date.

I found Toni Bernhard's book How To Be Sick helpful in terms of ideas for coping with the unwelcome changes. It took me a long time to read but was definitely more helpful than a counsellor I saw, who told me to take cold showers and sing about my frustrations to the tune of Incy Wincy Spider.

I wish you all good things and hope that things come right for you. In the meantime I know it's tough beyond tough.

Sophie

Deb

Mar 11

Replying to

Hi Sophie,

I’ve downloaded and started listening to this book on audible thanks for the recommendation!

Deb

Mar 23

Replying to

Deb it is definitely hard to find good medical support! I have found Clinic 19 useful. https://clinicnineteen.com.au/

Mia TAS

Jul 27, 2023

Hi all, I'm Mia and live in the north of TAS. March 2020 my life changed when I got long covid and have been battling ever since. Over 42 months of this BS and no change in my condition. It feels a bit worse lately. I'm more tired and more despondent. I have breathing issues like it's no longer automatic and I breathe in but when I breathe out, it seems like a flat balloon. My anxiety levels are through the roof, I get hot and cold shivvers. It was warm last night but I was getting waves of cold shivvers go through me, my teeth were even chattering. I've stopped going out. I have agoraphobia with panic disorder now. I'm very unhappy.

Edited

Dec 05, 2023

Replying to

So sorry to hear that Mia and hope things can improve for you over time - they often do with LC

Gareth

May 22, 2023

Hi my name is Gareth

Ive been diagnosed with long Covid and due to some of the symptoms my employer has stood me down from my job. You read online about how employers are suppose to support their employees in such time as this but I’ve got complete opposite. I feel I have been discriminated against

Nov 28, 2023

Replying to

Hi Gareth - I've been stood down too. There's lots of us. It's a while since you posted, how are things now?

May 22, 2023

Hi everyone!

A very warm welcome to our new community members who have just recently joined the forum - @Tammy @Gareth @Ket @Sarah-Jane @Milo @Alex - if you haven't already done so, we would love for you to introduce yourselves here and to tell us a bit about your experience of Long COVID.

If you need any assistance with navigating the site (or any other questions or concerns!), please reach out.

Warmest,

Long COVID Support Admin

May 22, 2023

Hi I'm Alex. Just learning how to post here!

I caught COVID in early July 2022, so I'm relatively new. However I have prior experience of health conditions so some of the issues we experience with LC are familiar to me, including the challenges in gaining medical treatment.

I'm grateful to find a closed, moderated space. I find Facebook a bit intimidating and chaotic! I'm on an international LC support platform but there arent many Aussies so its good to have something local.

I have various symptoms, most of which are in the ME/CFS and dysautonomia favours of LC. I'm largely housebound and cant work at the moment, but Ive improved a lot over the last 3 months and hope to keep on doing so. "Largely housebound" offers much better quality of life than my previous "always bedbound"! I want to offer support and encouragement to people who are stuck in bed 💪

I like gardening, hiking, coffee, nature, books, animals and my science-based career. Some of these are on hold but I'm adapting 😁

May 22, 2023

Replying to

Hi Alex,

Thankyou for your introduction! It's so very lovely to have you join our community. And please let me know if you need any assistance with the forum. We have a few different categories but at the end of the day, this forum is completely yours to use however you feel comfortable so you're welcome to post wherever you like!

Your hobbies / interests / career sound fantastic - I hope that you're able to get back to enjoying them all soon.

Thanks for sharing, Alex.

Warmest,

Sally

Long COVID Support Admin

May 08, 2023

Good morning 😊

A very warm welcome to our new community members who have just recently joined the forum - @Suzannewarby @Gill @Angela C @Bette Nelson - if you're feeling up to it and you're comfortable doing so, we would love for you to introduce yourselves here and to tell us a bit about your experience of Long COVID.

If you need any assistance with navigating the site (or any other questions or concerns!), please reach out.

Warmest,

Sally

Long COVID Support Admin

Suzannewarby

May 09, 2023

Replying to

I have had symptoms of long COVID for 3 months without knowingly had COVID Ie head pressure, increase in tinnitus, burning eyes, fatigue (and nausea for 2 months). I have had numerous investigations which are all clear but I continued to feel dreadful. I saw a neurologist nearly 3 weeks ago who said my problem was chronic migraine/tension headache?? However, I was prescribed a small dose of antidepressant (Amitriptyline) 10 mg going up to 30 mg over 4 weeks. I’m not up to third week yet but I feel almost back to norma. was it Long COVID? I don’t know but if you are desperate as I was , see your GP about giving it a try

Alan

May 02, 2023

Dear all,

After reading about your struggles I feel guilty even mentioning mine. I had a reasonably mild COVID in December and recovered well. After around 6 weeks I developed shortness of breath, chest pains and heart palpitations. As I have an artificial heart valve, I just thought that the valve was failing. I went to see my cardiologist and did an ultrasound on my heart and everything was normal. Now three months later I stell have some shortness of breath and palpitations in particular after exercise. I feel consequences for about two days after going for a long walk. Otherwise, I am fine with my energy levels and ability to live and work.

I am consulting with my GP and have consulted with my cardiologist but not much help there. I try to read medical papers and it appears there are no proven treatments. I am determined to try whatever might help and is not likely to harm me. I even took a dose of psilocybin after reading that it helped some people. It worked quite well but only for about 5 days but that is not something that one can take too often. Next on my list is a course of steroids and yoga intensive breathing.

I was hoping to exchange information with other long COVID survivors (not sure what would be an appropriate term).

I wish you all good health and to recover ASAP.

May 04, 2023

Replying to

Hi Alan,

I hope that you're enjoying your morning so far

Welcome to the forum! Thankyou for your generous introduction. I am very sorry to hear about your ongoing symptoms.

Please reach out Alan if you need any assistance whilst navigating the site.

Warmest,

Sally

Long COVID Support Admin

Gerry Hatton

May 02, 2023

Thank you very much for signing me into your group. I need all the help I can get.

May I respectively suggest that you review the otherwise good page on What is Long Covid.

Fatigue is listed in the WHO Definition
Fatigue is also mentioned twice in the additional symptoms.
Cough is also mentioned twice in the same list.
Breathlessness is mentioned twice (as well as being similar to Shortness of Breath)

I hope to make useful posts from time to time.

Regards

Gerry Hatton

May 03, 2023

Replying to

Hi Gerry,

Thankyou for much for pointing these out! I will amend immediately.

And thankyou for joining the forum - please reach out if you need any assistance with navigating the site.

Warmest,

Sally

Long COVID Support Admin

May 02, 2023

Hello everyone, happy Tuesday.

How is everyone doing?

A very warm welcome to our new community members who have just recently joined the forum - @Brainhealthforall @Alan @Neil Duncan @Gerry Hatton @Trisha - if you're feeling up to it and you're comfortable doing so, we would love for you to introduce yourselves here and to tell us a bit about your experience of Long COVID.

If you need any assistance with navigating the site (or any other questions or concerns!), please reach out.

Warmest,

Sally

Long COVID Support Admin

Karen

Apr 29, 2023

Hi everyone. My name is Karen. My covid symptoms were very mild, however over the past 10 months I'm still experiencing extreme fatigue, breathlessness, brain fog and more recently anxiety and depression. I need to use a shower stool and walker. I live alone, which makes it challenging. However I do have family and friends who help and support me. I still get incredibly frustrated and sad at how my life has changed, from an extremely active person to one which needs to rest after completing the most simplest of tasks. One factor which is always at the back of my mind is HOW LONG IS THIS GOING TO LAST, because at the moment I feel a shadow of my former self

May 01, 2023

Replying to

Hello Karen!

Thankyou for your introduction. I am very sorry to hear about the challenges you're facing and the impact that Long COVID has posed on your life. I can imagine that living alone may be difficult at times - I am very glad to hear that your friends and family are proving you with care and support.

Thanks Karen

I hope that you have a lovely day - please reach out if you need any assistance

Warmest,

Sally

Long COVID Support Admin

SteveDM

Apr 29, 2023

Hi everyone! I've been struggling with ongoing and often extreme fatigue for a couple of months now and it's been an ongoing battle to not have it compromise my job. I'm a Business Analyst and am required to engage with business stakeholders on a regular basis. It's been a blessing being able to work from home most of the week and I find that Zoom meetings are usually followed by lying down on my bed until the next meeting. I find that I have ongoing droopy eyelids, brain fog and am often dizzy and light-headed upon standing up from a lying down position. Has anyone else been experiencing similar symptoms?

May 01, 2023

Replying to

Good morning Steve,

Thankyou for introducing yourself to your fellow community members! It certainly sounds like it would be difficult to navigate work meetings whilst managing the fatigue associated Long COVID. I am happy to hear that you're able to work from home.

Thanks Steve - please reach out if you need any assistance.

Warmest,

Sally

Long COVID Support Admin

Fran

May 01, 2023

Replying to

I have definitely had similar symptoms. I find that having to concentrate and focus is extremely exhausting and triggers severe headaches, dizziness, aches and pains, sore throat, fatigue and then the body cramps follow. The only way to easy the symptoms is lying down and snoozing....

https://potsfoundation.org.au/living-with-pots/

May 22, 2023

Replying to

Steve regarding the dizziness - it would be worth investigating Postural Orthostatic Tachycardia Syndrome (POTS). Quite a few people with Long COVID have this, and there are treatments that help. There arent many doctors who understand it unfortunately but its actually easy to test. Shop around.

Simple explanation from POTS UK:

Further info from POTS Aus, includes list of doctors:

Apr 24, 2023

Hello everyone 😀

I hope that you're all doing well!

I'm thrilled to welcome our new community members who have just recently joined - @SteveDM @Nicole @Valeria @katiekoogreenie @Gee @Anna - if you're feeling up to it and you're comfortable doing so, we would love for you to introduce yourselves here and to tell us a bit about your experience of Long COVID.

If you need any assistance with navigating the site (or any other questions or concerns!), please reach out.

Warmest,

Sally

Long COVID Support Admin

Beau

Apr 20, 2023

Thanks for the welcome Eve,

I‘ve been diagnosed with long-covid for over 2 months now. I’ve been having nightmares and the day to day is hard to leave the nightmares there where they were; from the night before. It almost feels as if who is inside is so blurred and my sense of self is severely foggy also. Can anyone else relate to this? Sensitivity to light as well as strange sensations in forehead and ears. I had vestibular neuritis (inflammation of the nerves connecting the ear to the brain, severely affecting balance and coordination) prior to the long-covid diagnosis, I’ve done some research and this along with long-covid affects how the brain processes information and the world - your outlook etc.

The standard sluggishness, fatigue, aches and pains all over body, as well as dizziness and lack of motivation too. I’ve also been diagnosed with pericarditis + myocarditis, on medication called colchicine for this daily for the next 3 months.

I’ve had to leave my job and move back home, thank God for my family. My quality of life is so diminished, this has had the absolute biggest impact on my life and ability to live freely to date…

Any feedback / people with similar feelings etc would be greatly appreciated.

You truly never know what people are going through - the invisible illnesses are real.

God bless,

Beau

Gareth

May 22, 2023

Replying to

Hi Beau

i can completely sympathise with you as I am experiencing same symptoms and diagnosis especially when it comes to pericarditis. I also get chest pain. Before being diagnosed with LC I thought I was having a heart attack but once I was diagnosed I found out chest pain was also a symptom. My employer has stood me down due to the diagnoses so currently I’m not working So I can definitely sympathise with you.

Gareth

May 22, 2023

Replying to

Beau you are definitely not alone with those symptoms. I dont have the blurred sense of self but I have heard others with LC describe just that.

I definitely have neurological impacts, but these are mainly cognitive function. I did have a brief episode of depersonalisation (I think that's what you are describing) and its no joke, its a very odd feeling.

You could try seeing whether a neurologist can make any suggestions. Sometimes this is actually a symptom of migraine, which is also a common LC symptom. Sometimes it is triggered by fatigue, so the resting you are doing is good medecine!

Otherwise, I have most of the symptoms you describe, and they are definitely common witj LC.

Fran

Apr 17, 2023

Thank you for the warm welcome message. I have been struggling through long covid symptoms since November. I have been struggling with returning to work and challenging doctors who tend to make me feel frustrated and anxious, it's almost like they think I am fabricating it all The physical challenge is one thing, but the mental side is worse.

I struggled accepting that I can't go around charging full steam ahead doing everything at once.Then accepting that my body will let me down and spiral into full on symptoms that are only relieved by lying around and resting.

I am hoping that the pressure in my head and cramps all over will subside and I can clean my house in one day again .....

Nic

Apr 16, 2023

Thankyou for inclusion and welcome. I’ve been experiencing a lot of symptoms and now it all has a name. I’m off to a Respiratory Specialist this week and I can recommend Chinese Herbs. I’m eeking back some energy I got COVID in Jan this year. I’m unable to work as I can’t hold information, concentrate, think clearly or quickly. Reading is very difficult and I crash after a minimal amount of work is done. I think I need to stop trying. I am realising again how precious good health is. I wish you well, with kindness Nicole 💕