Long Covid in Adults

Okay. I've tried, a few things, not very many. As I mentioned, the headaches can be bad, and I've just used paracetamol for those, when I need to. And quite often they, the headaches, I get bad headaches before going to bed, or when I lie down. So, sometimes taking a couple of paracetamol, you know, just before bedtime is, is useful.
 
There was a, there were some reports earlier in the year, I think, about the possible, benefits of antihistamines for both dealing with the Covid itself, and also to deal with Long Covid. I tried some, you know over the counter antihistamines that you can get for allergies, and so on. I tried some of those for a week or so, and didn’t, didn’t have, didn’t observe any benefit of those. And in fact, I didn’t, I don’t get on, personally, particularly well with antihistamines, anyway. Something else that I've tried was, CBD oil, …cannabinoid oil.
 
Again, thinking that it might, again, which is an over-the-counter sort of medicine that you can get. It, it certainly had an effect on my head [laughs]. You know, and I, I got some, I had some strange dreams, and I think I was just quite sensitive to it, and didn’t get on with it particularly well. So, I stopped taking that. So, no, no, no other remedies, nothing, really.

Now I’m not on any for any of it, but what I was on was…I was on…when I first came out of hospital I was on, a long term three month of Colchicine, which is an anti-inflammatory, and I was on a strong dose of ibuprofen which I was only to be on for two weeks, and I was on omeprazole to protect my tummy from the ibuprofen. I was on paracetamol and I was on codeine, and I’m not a tablet taker at all [laughs].
 
So that was quite an issue for me, but anyway, I got used to taking them. I stopped the ibuprofen, as I was told to do, but I was getting quite a lot of pain still, so the GP put me back on it, and the Colchicine I was on for three months, so that finished in December sometime, so, that stopped, the brufen stopped but again I was still getting a lot of the pain so she put me back on the stronger dose Ibuprofen and the omeprazole again, so I’d gone from being off them to back on them again.
 
I stopped the Ibuprofen just two weeks ago, because it was starting to…even with the omeprazole, it was starting to affect my tummy. I was getting a really sore stomach, so I stopped it.
 
And the paracetamol…the codeine, I started weaning myself off it and down, probably in Jan…it was in January I think I’d finished it, and I’ve only just been weaning myself down off paracetamol. I don’t take anything, I haven’t taken anything for, since Sunday [laughs]. That’s quite fresh, so I must admit…
 
How do you feel about it?
 
I’m glad, but through the night I thought, I’m going to have to go and get something, but it has settled again. Because I’m not a tablet taker [laughs].
 
And were you on any other treatments for any of the other symptoms that you were experiencing?
 
No, I just persevered and just got on with it.

Brilliant. And that must be quite a job in itself just to keep track of all of the medication and take it at the right times and…
 
I’ve ended up getting a pill box and I have to, yeah, I have to, I do it every week, put them all out for every day, I check it, my other half checks it, again it’s back to this confusion stuff. I have to make sure that nothing’s been doubled and thankfully none of the tablets I’m on do I take more than one tablet, so even though they might not know what the tablets are, they can look through and go, hang on a minute, why have you got two white circles or why have you got two blue pills?
 
So again that’s…it links back to that, that brain fog of can you just check that, and there’s been a few occasions I would never…I don’t think that I’m that confused I would ever take them, I would spot it when I put them in my hand to take them, there was a double codeine in one, and there was two omeprazole in one of the other ones, and we’ve caught them by that check.
 
But it’s, like you say, it’s, it’s a lot to manage. It’s a lot to, to make sure you’re doing correctly.

And then I started paying more attention to other articles in the media. And one of those led me to a medical Twitter – I don’t have a Twitter account, but a lot of medics do. And there was a lot of chat about Long Covid, on there. And I ended up signing up, and asking someone, in a, just feeling completely desperate at that point, asking if I could join the group. So, they’d set up, a small peer group, to help with, pacing and management of symptoms. And she was so lovely and so kind, and introduced me to the Facebook group, with doctors.

So, I found, [group] I found, the doctors’ group, and a larger UK wide group. And, for me, these groups were really helpful. One of the things that was, difficult for me was, feeling like I was going…wondering if symptoms were in my head, because they seemed so preposterous, not understanding things, and feeling quite alone, because I didn’t know anyone else who had Covid, at that point. So, meeting other people who had the same symptoms, in the same order, at the same time, was just, my mind was blown really. and it gave me so much reassurance, and I suppose, some validation as well, and also, support. And then, you know, as I got better, I paid more attention to…in the doctors’ group, lots of symptoms were shared, and the, you know, there was a lot of discussion around what’s going on, and what treatments might help. And that was pivotal in my recovery – getting onto a beta blocker for the tachycardia. It was life-changing, literally.

Getting on a good antihistamine, as well, for the, all of the Mast Cell symptoms, that made a massive difference. and there’d been a period when I'd had really bad hayfever, before I found any of the Facebook groups, and I took, antihistamines for a couple of weeks, and I felt better. And afterwards I thought, “Why did I feel better during that period, could it have been the antihistamines?”, not really understanding the mechanism for why that would be helpful. But then, so through one of these groups, I found out, and I got onto something regular, and it really, both of those medications have been life changing. Yeah, so most of my learning, I guess, about Long Covid, has been through these groups.

So, I went on a little run round my block basically and, that was quite tiring [laughs]. It was, it was barely a run as far as I was concerned, but. So, I left it another week and thought right, I’ll just see how I feel. Went on another run and that one was terrible, and my heart rate was over two hundred and I thought I was going to pass out and, I was just like oh this isn’t right. So, I was in bed the next day, I had like a definite relapse, felt awful.
 
And then on the Monday I, that was the weekend, and on the Monday I felt well enough to take my dog a little walk, but when I was out I felt dreadful and I felt really odd, just can’t even describe it, just dizzy and odd. So, I went home and I said to my husband, “I don’t feel right, I feel this, I feel my heart was going and I just felt really strange.” So, he has a blood pressure monitor so he took my blood pressure and it was high, my heart was high, so we phoned the doctor and she went through a few things with me about, it’s not a heart attack basically, but this isn’t right so, you know, rest up.”
 
And she called the cardio department and they suggested putting me on beta-blockers, they said that’s what they’ve been doing with people post-Covid. So, they gave me then, and at this point I hadn’t seen a doctor, I hadn’t seen anybody, you weren’t to see anybody. And they flattened my blood pressure and heart rate so I could barely stand up [laughs]. So, called the doctor and she said, “Come off them right now. They’re not for you.”
 
So, at that point I said to her, “Do you not think I should be seen by someone? Because I don’t know what’s going on.”

It’s interesting that you had a different experience with the more private doctors.
 
I think they’re much more willing to listen and take a chance on medication. Nearly every medication I’ve got is prescribed off licence. All from private doctors.
 
I have, I’ve seen improvements with them like I’m not I’ve not fainted since I’ve been on the tablets. I’ve not, my legs aren’t blue anymore. I can move them again.
 
Yeah. Was your family supportive of you kind of trying those more, I guess, experimental treatments?
 
Yeah. I think because my mum had MS and went on a clinical trial and it was amazing for her, my parents were always, you know, of the opinion try things. You know, try it. I felt like I couldn't get much worse. What did I have to lose? To be honest, I just want to try anything to get better.

I think that things like, things that perhaps aren’t, many doctors aren’t really totally aware of. So, for an example mast cell activation syndrome and it’s one of these kind of newish things that’s kind of not great, not very understood and the diagnostics aren’t really there and they’re very difficult to do. So, I think that people kind of spreading awareness of things that people can try because that’s all there really is with Long Covid. You can try some things that you hope might alleviate certain symptoms and just hope that they work.
 
Things like LDN which is low dose naltrexone and that’s helped a number of people. That’s also got a history of kind of helping patients with myalgic encephalomyelitis yeah, so I think this sharing things that people can try and then they can ask their own doctor, oh here’s this study, can I try, that indicates antihistamines are helpful, can I try it? And I think it’s kind of people help each other they help advocate for each other, basically without actually being there.
 
And has anything ever been suggested to you and then you’ve gone to your doctor to say, could you try that?
 
Yeah, I’ve tried a number of things and I think that because it’s probably private, it’s kind of easier to try things. Certain things are very expensive, and you wouldn't be, I wouldn't be able to you know, get privately. But it is just like a quick trial of for an example a calcium channel blocker which helped me for a time then that’s helpful to just kind of have the opportunity to try it, particularly with POTS. Many GPs I think don’t feel comfortable prescribing things like midodrine and things like that. It needs a specialist input. So, yeah.

I’d like to see so step one is, is like I’d like to see the, the what the origin of what the actual mechanism is behind the illness or mechanisms behind the illness are and I think that’ll take a while. There’s a lot of competing evidence and competing hypotheses about that. But even if and therefore, the next step is, what treatment works. What treatment helps. And sometimes you need to know what the underlying mech, mechanisms are, but sometimes you don’t. Sometimes you are able to try out medicines that have kind of been found to work on an informal basis and test that out.
 
I would love even if they said, you know, there was, there was, you know, like, like for example there’s like these particular antihistamines which potentially could improve Long Covid outcomes that, you know, there’s, there’s, there’s evidence that, you know, is then put through SIGN and NICE that prescribing these antihistamines can make life better for Long Covid, you know.
 
Like something like that just like just treatment that can take the edge off or something like that like that is a bare minimum of what might be possible. And, and yeah, like, I’m very interested in pharmaceutical treatments, and I’m very interested in what things will make people better and what can move these things along. And, like, you know, that’s two of the basic kind of medical side of things.

I presume you you’ve seen maybe some of the research about the micro clotting as a cause of Long Covid? Yeah.
 
Great so I’d, there’s been loads of chat about that on the doctors with the Long Covid group as I’m sure you can imagine. And Germany are recommending triple therapy. So they’re recommending aspirin, clopidogrel and apixaban, which like my geriatrician heart is going like ‘oh my god how can anyone prescribe that, that’s terrifying’. But my patient heart is going ‘oh please give me anything that’s going to make me better, I’m so bloody sick of this’.
 
So I was, so like I can 100% see both sides of this like incredibly frustrating issue for everyone. Like I get as a doctor there’s no way I’d prescribe all three, especially not backed up by NICE. Especially when we’ve only got like beginning, the beginnings of the research.
 
But there’s also the geriatrician part of me that’s like, yeah but do you know what, at the moment there isn’t a lot of evidence because we need to make some evidence. And actually, the only way we’re going to be able to do anything is by taking at least some trials like trying some stuff out. And then the patient part of me that’s like, ‘oh I don’t really want to take triple therapy, but I’d really like to be a bit better than I currently am.’