'Long Covid' / 'Covid Long-haulers'

Has anyone else had persistent daily headaches since getting Covid? I had covid over a year ago, had some bad fatigue over the months after which still comes up when I push too much, but the main thing is I get a headache every day. I was unvaccinated at the time I had covid so I was very ill but I am vaccinated now.

Late response but I’ve had long covid abt 2 yrs now and all that time had a persistent headache every day along with the other more reported symptoms of fatigue brain fog etc. I’ve been told it goes with the condition and can’t have my noggin scanned to check nothing more sinister, and not managed to convince anyone that it might be worth checking just in case😂
I think it’s likely to be another part of long covid and this seems to be the received wisdom, in both our cases do feel it would be worth checking like those ads on telly tell you to, should ask ur doc for scan to be on safe side, wishing you luck with that

I had headaches every day for a year pretty much, had covid again and it went away. Very frustrating for sure. Never had headaches as an adult at all really.

You could get an eye test, the extra fancy one they charge a little extra for, if intracranial hypertension is a problem then they pick that up.

It's unlikely your GP would send for a scan, however NICE offer the following guidance to clinicians...

https://cks.nice.org.uk/topics/long-term-effects-of-coronavirus-long-covid/

Granted it is likely CoVID related but there are other causes of headaches which should be excluded. To be fair most headache variants are a clinical diagnosis and don't need a scan, but they should at least have some interaction with you.

If they don't find anything ask about long CoVID clinic referral. GL

This too!

Edit... I was trying to reference the eye test and failed!!

Yes I had persistent headaches and dizziness from February to November to the point that I was prescribed Amitriptyline just over a month ago. It's helped a lot with both symptoms.

I've also had the fancy eye test and on that being clear got sent fr an MRI. All fine.
I read that it could be that the little capillaries have been damaged in the brain and that can cause the headaches. Not sure if there's any truth in that.
Anyway, the drugs seem to help. I'm on the smallest dose.

Thanks for that I am with Kings Long Covid clinic such as it is, and have been given amytriptaline which I must say initially seemed to help but not so much now, my follow up appointment with consultant who prescribed that has not been cancelled just 3 months overdue now, emails and calls ignored in relation to that so not cancelled but not happening . In case it becomes a problem as has done in my case would advise anyone to get into a long covid clinic and get a doctors note for employers or social security as to your capabilities or lack therof, but if it’s kings expect year long waits before a cancellation and disappearing contact desks/admins/physical premises for a further 6 months and boxbticking rather than treatment of any kind. Not a lot they can do but equally pretty poor all round. At this stage I think recovery is down to the individual, can recommend the amytriptaline at least for some respite though

Findings of a new major study on long covid

https://www.nature.com/articles/s41579-022-00846-2

Anyone got any pointers to a long-COVID support group?

Have chronic fatigue, on Kings' support programme.

Managing /accepting the physical exercise side OK-ish but not so much on the confusion/memory/sensory issues etc - I'm not working, and certainly can't do the kind of work I was before. Waiting for referrals in that direction, but as @JodyAR I'm not holding my breath.

I think I could do with a peer group session of some kind to chat about it. Anyone come across anything like that? Am in S London.

Sorry to hear, hope you do make the fullest recovery possible. Have you considered Body Politic? It's international and online-only, but they're also recommended by UK-based Long Covid SOS, and at this stage it sounds like you'd maybe benefit from chatting about management strategies for brainfog etc - Body Politic users should have loads of those.

Cheers for that, even prepared to use Slack to access it ;-).

Actually just looking into your HRV tracking recommendation from another thread...👍

Oh good, hope it helps you! HRV hasn't been hugely helpful for day-by-day analysis for me, but it's very good at identifying longer term trends, and even though it's unlikely to make you feel any better, being able to see the data mapped out can help to feel a bit more in control.

It's also useful because so many of the symptoms are simultaneously very persistent and very vague, so you end up second-guessing yourself, like, is this actually a real thing or am I just imagining it? Being able to see those longer term trends of HRV tanking and rising helps you contextualise subjective symptoms/experience in a more objective way. And if you've enjoyed Strava or whatever then you'll be familiar with the lure of personalised data over time, heh.

Good luck!

Would anyone mind sharing any experiences of the long Covid clinic? Hopefully got a referral coming up.

And any suggestions on podcasts? I was hoping along the lines of health/lifestyle/science ones like the Huberman lab that would have some self recovery tips.

Haven’t checked this thread (or been on LFGSS) for a hot minute - lots of good advice in this thread! Also nice to know that I’m not the only one with daily headaches. Got a GP appointment coming up and I’m hoping to be referred to a long covid specific clinic. Sorry to hear about your experience with the Kings clinic. Seems like a lot of Long Covid people are having to manage it on their own a lot.

Good luck on referral. Be prepared to push and chase hard.

Obviously this is my experience and may vary with severity, symptoms, over time and with different providers, but...

I think it's 3 months before the GP can consider it long. So it took me 3 months after first GP appointment before they'd consider it. Then I chased GP. Then GP sent me for bloods and x-rays, required by COVID assessment clinic. Then I chased GP for results - turned out I'd been sent for the wrong blood tests, so had to go through another cycle.

I think I got to visit the Kings COVID assessment centre after another 3 months or so. In retrospect I significantly understated my symptoms there as I had what turned out to be a very temporary false recovery just before. Had follow up calls every few months since where I was able to redress this.

I finally have dates for appointments with different specialist clinics, for about 12-15 months since I first went to GP. But one of the clinics I was promised still hasn't actually been set up... also these appointments are video-only, which I dread.

Along the way, also had to make an informal complaint about my GP in order for them to progress one of the COVID clinic's recommendations.

It's really hard work and frankly really confusing as I have lost brain function and memory, not helped by letters being sent by mail which have taken sometimes months to reach me.

On the positive side, while not COVID-specific, I have found the local self-referred IAPT/'talking therapies' service really good for dealing with the more acute aspects of coping with it. Pretty short waiting list for me at least.

Some resources I’ve found really helpful:

1. Nice overall positive recovery journey https://www.bencoomber.com/blog/longcovidrecovery

2. Decode Your Fatigue - Alex Howard. Essential reading.

3. Gez Medinger…in particular this video. Watch no more than one a day of his others, otherwise it’s equivalent to doom scrolling https://m.youtube.com/watch?v=g-un3TK4caA&t=943s

4. Cold showers/baths are incredible for that heavy lethargic feeling

5. Headspace/mindfulness in the daytime, yoga nidra meditation before bed helps calm the mind

6. I saw a nutritionist in a health food store for supplementation. But a whole food diet with high quality meat and minimal sugar has been very helpful personally.

7. Wim Hof / richie bostock breathwork basically eliminated my breathlessness

8. I was also recommended emotional journaling, which whilst I was very sceptical initially, has been a nice way to vent.

9. Rest, rest and rest. Don’t exercise other than light stretching/yoga/short walks until you’ve done some good research.

10. Do something immersive and fun away from your screen. I bought a model kit, which was very pleasant and rewarding when it feels like you cant achieve much else!

Thanks - I ended up not being referred and was instead asked if I was depressed/anxious. Will be going back and chasing a referral. However, I do wonder how much of our recovery is going to have to be self directed. Glad you're finally getting some appointments and sorry to hear you had to jump through so many hoops with GP's.

The Ben Coomber blog linked by @recycled has some good information in it. Specifically the bits about relaxing your nervous system. I'm finding that pretty helpful too.

Anyone tried Nattokinase?

I have not personally, but I’ve heard some positive things on the r/covidlonghaulers subreddit about it.

did people see the article launched about the correlation of long-covid symptoms, and that lactic acid build-up was a primary observed aspect of long-covid?

No. Link pls?

https://www.frontiersin.org/articles/10.3389/fimmu.2023.1150105/full

Overview by the authors here: https://mastodon.nl/@vickyvdtogt/110196805189572082