Long Covid and MAV

Specific Illnesses & Conditions
1

Hi everyone,

It’s been a while since I last posted. Unfortunately not because I’ve been feeling super duper all the time.

This past 6 months or so I have been on the scariest rollercoaster yet. I’m going to try to explain it and I’m so interested in hearing from you all what you think, regardless of whether or not you’ve had Covid.

I got I’ll with Covid just before Christmas last year (2021) and it was the scariest thing I’ve ever experienced. I didn’t have fever (which I’m told is not great, as the body fights infection more effectively with fever), and I had the worst sensory overload, motion intolerance, fatigue, nausea, insomnia and gastrointestinal issues. At one point I was crawling to the bathroom. Amazingly it got a lot better within 3 weeks and I went back to normal (well, you know, my version of normal). I still didn’t feel good but managed. Then about 2 weeks later, bam, all the symptoms flooded back and never quite left. Everyone around me had a pretty easy time with their Covid experience.

I was bedbound for 6 weeks and barely functional for months. I had my familiar MAV symptoms, but much intensified histamine response type symptoms, horrid fatigue which ticks all CFS boxes, and the worst and scariest for my: a new type of anxiety. I basically felt like there was something literally wrong with my brain, a type of fear that sent me into uncontrollable panic and fear. I got a lot of help from my functional medicine contacts, including an endocrinologist who thinks I have MCAS and diagnosed long Covid.

I’ve been down many rabbit holes since in terms of research around all of this. My co-morbidities are endometriosis, hypothyroid, oestrogen dominance, recurrent pregnancy loss, I suspect CFS. My periods have been completely erratic since the start of the pandemic too and more so since I got Covid.

Now my fatigue is better, I still have my old MAV symptoms and the episodes of scary panic still happen every few days. I am almost back to normal activity.

My hypotheses:

  • Covid causes systemic inflammation and hits hardest where you are most vulnerable (in my case the brain via dizziness and anxiety) - so the intense panic is literally brain inflammation?

  • my hormones were already hanging in the most delicate balance and Covid firmly tipped the scales. I have read some theories about oestrogen dominance as a risk factor for both vertigo and long covid

  • my immune system was already in overdrive due to mild CFS, which I didn’t realise, again increasing likelihood of a bad acute illness and long covid

  • MCAS might account for a lot of long covid, I took cetirizine and famotidine for several months and was reacting to anything and everything (mainly visible in facial flushing). This is talked about by Dr Tina Peers

  • Long Covid IS CFS/ME! This according to Dr Sarah Myhill

What I find intriguing is that I appear to be the only one on this forum to be suffering from long Covid! Or am I wrong? If I’m right, then why is that? I definitely have/ have had all the classic MAV symptoms.

And how does MAV fit into long Covid?

Really looking forward to hearing any thoughts

2 Likes
2

Hey, so sorry to hear this. What a pain in the neck. I posted a little while ago about post covid headache and feel I’m in for a while longer. I’m day 10 and feel worse than I did yesterday- more congested and coughing more! Super duper tired. Does this ever end.

Having this more than 6 months though is awful. What is the plan moving forward?

1 Like
3

Hi Belindy, thanks for replying and equally sorry to hear you are suffering. Yes I read your Covid headache post. What a nightmare. Made me think again how Covid hits hardest where you’re most vulnerable (I don’t know if headache or dizziness are your worst or both). But headache during Covid does seem to be very common. My friends sister got ‘long Covid’ after the first wave and her symptoms were mainly neurological, including headache. She was then diagnosed with migraine and slowly improved on Ami. It sounds like for many of us there may need med readjustment. Having said that, 10 days is still super early. I would concentrate on rest, good eating and anything that helps to keep the bad thoughts at bay. Dr Myhill (the ME/CFS/post viral fatigue specialist) recommends taking quite high doses on vitamin c spread out through the day as it passes through quickly. And decent dose vit d if you’re not already taking it. Perhaps that might help?

I’ve realised it’s all a very slow waiting game and trying to support your body as best you can following the viral onslaught.

In terms of my plan, I guess slow and steady wins the race. I’m not on any of the classic migraine meds. I’ve increased my thyroid meds which seems to have helped a bit with energy. My endo told me to go paleo/keto for a while, but I’ve been lagging there. In general, nutritional ketosis has proven very helpful in the past. I considered trying beta blockers as the Covid also gave me POTS symptoms and general heart issues alongside the crazy anxiety, but those seem to be slowly improving now, so I’ll hold off.

What’s your plan? Are you able to take a decent chunk of time out from work etc to rest?

1 Like
4

Wow… POTS hey. I’m actually seeing a cardiologist soon about that very thing. And this is before covid. How did you get on with that and what helped?

CFS sounds awful. I’ve often suspected I have this but then I’d pick up again so never really investigated. Having that for months would be hell. I really hope I don’t end up with this.

It was just a headache and vomiting for 90hours this time - if it was dizziness too I would be so much worse! Yes 10 days is early but don’t feel much better. I’m a teacher and whilst I could take more time off, there is a teacher shortage and crisis So feel the pressure to return.

Your hypotheses sound interesting. Hormones always on the list with trying to lay blame for this horrendous condition, and I whole heartedly agree.

I’m sure lots and lots of people on this board have and will experienced similar symptoms to you. And for this long. Let’s wait to hear from them. I would love to hear from people who had long covid and then got reinfected. Hope it wasn’t a repeat.

1 Like
5

I’m not sure MAV really does ‘fit into long Covid’ though, law of averages, wouldn’t anybody with other similar (neurological in this case) conditions but more prone to experiencing any extended exacerbation of any relevant condition.

According to statistics I’ve read only 17-30% of Covid sufferers experience long Covid so I suspect the absence of long Covid reports is just a question of Percentages. How many MAVers have reported catching Covid in here. Not that many I suspect.

If there’s a link between MAV and long Covid I’d hazard on the systemic inflammation theory as the best fit. Same neural pathways and all that and besides wouldn’t all illnesses tend to take advantage of the weakness link.

I too have heard that long covid is CFS/ME. Sounds logical. I recall ME originally being called ‘yuppie flu’ because it occurred post influenza attack.

Interesting topic of discussion. Often course I’ve no idea of the answers but could easily pose another question. How would one establish that one had long Covid?

That sounds to me just like one of my full on, pre-medication Vestibular Migraine attacks and they could last for weeks.

1 Like
6

It’s not just about the brain and nerves, surely?

Wood for trees?

COVID attacks the mucous membranes directly and your middle ear is covered in one!

(This is why it is implicated in stomach problems too).

I agree, it could be inflammatory, but it could be the surface of your middle ear (or some point in the physiology of your ear & nose) has become inflamed or which is compromising the normal (learned) pressure management of your middle ear.

If COVID has attacked one side more than another (feasible) or caused an uneven inflammatory reaction that could be a problem. We know that alterbaric pressure in the middle ear (one ear experiencing a significantly different pressure to the other) may cause hallucinations in the brain in the form of interpreted vertigo, spinning, and dizziness. (This may also be the cause of people’s temporary dulled hearing during attacks … just saying …)

(as I’ve pointed out before migraine could be an escalation of the brains irritation in the face of these hallucinations which defy normal sensory correlation and therefore frustrate the learning process to the point of potential breach of healthy thresholds of the biochemical algorithm it uses to tune itself).

Furthermore, the inner ear itself is thought to be ‘immune active’. The normal pressure inside the inner ear is thought to increase in response to infection when the body is confronted with one. This might cause temporary changes in response to movement stimuli and have similar impacts to those described above …

It’s not just all ‘nerve pathways’, ‘brain’, and ‘migraine’ … too abstract! The issue here could be very much more physical and ‘straightforward’?

1 Like
7

Oh no, so sorry you’re having the heart troubles! My cardiologist said you need to have POTS symptoms for 6 months before you can officially be diagnosed, so fingers crossed it passes for you as it did for me. I upped my salt intake (1tsp Himalayan salt in water in the morning with half squeezed lemon). Maybe that helped. Gentle movement also good. Someone I know got onset of vertigo from taking salt tablets, so something to be aware of! But in general I think, as things slowly improve so will the POTS.

Regarding CFS, I’m like you. It would sort of wax and wane, but I think just having these struggles in the first place could be an indicator. It’s just helpful in terms of continuing to improve my understanding of my needs. Exercise intolerance/ sensitivity is the biggest indicator for me (post exertional malaise).

I researched a lot about getting reinfection while having long Covid and it seems for most it’s not as bad second time round but I also read about a child with long Covid, for whom it got a lot worse. But we’re talking reinfection following initial infection with the first stronger strain. It might be different/ better with the more recent strains.

It’s hard you being in such a high octane job. Self care in one of the hardest things to learn, especially when your health needs don’t quite match up with the demands of your environment. I hope you can get the maximum downtime you can to give your body the best chance you can to recover from this

8

I go on NHS definition of long Covid. As a syndrome it’s just a cluster of symptoms. I get your point about averages. Someone I know with an extremely compromised immune system (type 1 diabetes, addisons) recently got Covid and is just having a mild cold type illness! And so I am confused about mine. What I forgot to add is the heart stuff and the POTS to my initial illness, as well as cough. But the most debilitating symptoms were the ones I describe, which I get just sound like terrible VM. But it felt very different, I can’t quite explain.

I do think now the estimates for long Covid are higher than initially thought. Not everyone is bed bound with it, but a lot of people experience some sort of lingering symptoms.

9

Interesting, I hadn’t thought of this.

1 Like
10

And that would really have me saying “Good Morning Migraine”. Two huge triggers. Not sure which would prove worse.

Absolutely. And there much documented evidence on how lemon juice affects around too aside from personal experience.

Good luck to those that can tolerate such dietary additions.

2 Likes