Family experiences of Long Covid
Treatments for Long Covid
At the time of writing (October 2022) there are no approved treatments for Long Covid itself, although some of the common symptoms (for example pain, fatigue, and breathlessness) may be improved.
We asked young people with Long Covid and parents caring for young people with Long Covid about any treatments they had tried to help with symptoms. Sometimes these were treatments that they’d found out about by themselves and other times treatments were prescribed or recommended by doctors. In terms of medicine, these ranged from over-the counter painkillers such as paracetamol and non-steroidal anti-inflammatories (e.g., ibuprofen) to prescription medicines. Young people had also tried treatments like hydrotherapy, oxygen therapy, acupuncture, talking therapies, antihistamines, and a range of vitamins and supplements. Some had also made changes to their diet.
Views were mixed. Some reported that treatments like prescription steroids, melatonin (a natural hormone that helps control your sleep cycle), hydrotherapy, and talking therapies had helped, whereas others reported little improvement or were concerned about negative side effects.
Lucy A finds it very helpful to talk things through with her psychiatrist. She thinks acupuncture has also helped.
Lucy A finds it very helpful to talk things through with her psychiatrist. She thinks acupuncture has also helped.
Lucy: It’s very helpful to talk things through. I’m very comfortable with her. She’s a very good therapist. She’s really nice. She’s kind of found my way of dealing with things. So, I’m quite creative. And so, if I feel kind of down or anything, I always like play with clay and make something or paint or you know, colour or draw. I do something like that because I’m artistic and I do, I like doing stuff like that. And she’s definitely helped with so…she’d be... She constantly says, as annoying as it is because she says it every session. She always tells me to kind of look at the situation in a different way. And because she says it every kind of session, it’s annoying and stuff. But it’s slowly working and it’s definitely, I’m seeing myself look at more of a positive side of things. Yeah, it’s kind of working it into my brain or something, but she’s very helpful. Yeah.
Mum: Started doing acupuncture, haven’t you.
Lucy: Oh yeah, I started doing acupuncture. It’s weird because they just, they stick needles in places like at the top of your head, which you don’t think they could do that. No, I wasn’t expecting that.
Interviewer: Have you found that? Do you think that’s helped at all yet?
Lucy: Yeah, I think that’s helped, yeah.
Interviewer: And is that something that you’ve found out about for yourselves or did your GP suggest that?
Lucy: We found it out, yeah.
Mum: Yeah, we just got to the point where we’re just going to try and anything [laughs].
Good plan [laughs].
Mum: We’ve had two sessions in the last two weeks. I think she’s coped with more than she was doing before. But it’s hard to say.
Melatonin didn’t work for Ben as it was causing him side effects, but he thinks vitamin D and B12 have definitely helped his sleep.
Melatonin didn’t work for Ben as it was causing him side effects, but he thinks vitamin D and B12 have definitely helped his sleep.
Yeah, we went to one yesterday, we went to a meeting at the Long Covid clinic and that was...they’re going to...we tried melatonin for my sleep, and that really didn’t...that didn’t work, so we’re just trying to go...we’ll try and, kind of, build a plan really for the next few months for school-wise, just getting more out of the house in that aspect, my sleep as well, my screen time, stuff like that, just trying to do sort...a clear plan really for the next few months.
Yeah, sleep has been the main instigator of Long Covid as a whole for me; it’s been the sleep, the sleep, and the sleep. I can’t get to sleep, I can’t get up when I’ve fallen asleep in the morning, I’m just falling back to sleep when I’ve woken up. We tried the sleep medication like I said, and it didn’t work, so we’re going to see how we go.
No, because with the melatonin, it was helping me get to sleep, but in the day for...I don’t know why, but in the day it was making me...it was more frequent, it was stomach aches, it was different pains in different parts of the bodies, it was more frequent headaches, it was...I think it was instigating the other things. It did...it was helping the sleep, but it was affecting the rest negatively, so.
We’ve been trying stuff, so I’ve been taking vitamin D, B12, C, zinc just...you know, they’re—they will help you when you take those, they have been helping me especially vitamin D and B12, definitely.
Jake says that melatonin has helped him to sleep and group therapy with other teenagers his age has helped him feel that he’s not alone.
Jake says that melatonin has helped him to sleep and group therapy with other teenagers his age has helped him feel that he’s not alone.
But I wasn’t fatigued because I wasn’t actually feeling tired. I just wasn’t sleeping. But that really happened to me and I got melatonin now, which helps a lot with my sleep. It’s so nice to be able to sleep again.
So, yeah that kind of all happened kind of up to speed and now I’m in group therapy with some other sixteen, seventeen-year-olds, which was helpful I have to say. It’s been… I don’t know at the moment, we’ve only gone over stuff went over with sleep therapists. But it’s still really helpful to see that I’m not alone and there’s other people with it as well.
As a GP, Richard was able to access a powerful anti-inflammatory called colchicine, usually prescribed for gout, which he thinks may have helped with his son’s stabbing chest pains.
Parents like Lindsey and Beth talked about their concerns around drug side effects, while Richard said he felt that psychological therapy made his son worse.
Lindsey talks about the nightmares her son suffered after being prescribed topiramate, a prescription drug.
Lindsey talks about the nightmares her son suffered after being prescribed topiramate, a prescription drug.
She prescribed him a drug topiramate quite recently and it’s another thing that has come from Covid, so Michelle has, has allergic reactions now that she didn’t have before to things and we’re also not sure if Vinnie is having allergic reactions. We tried to push that with the paediatrician to get a test but he was prescribed topiramate which was actually a drug that Michelle had been prescribed as well which was to do with your brain and things like that but Vinnie had such an adverse reaction to it with one dose, he literally slept through the night and was calling, like literally living his day through the night out loud, like vividly in his dream shouting, calling, talking and Vinnie doesn’t sleep anyway at the best of times so I was like I’m not giving that, I’m not giving that again and I just, I said no way, this is evidently not agreeing with him.
And when we looked at the…because the doctor didn’t go through side effects with us at all, when we looked through the side effects it did state that 0.03% of people have this reaction where they vividly live their dreams and can sleepwalk and sleep talk and things like that and I was just like, no I’m not, I’m not prepared to put him through that.
Beth has seen some improvements in her daughter, who uses Ventolin and montelukast, but is keeping an eye on her for potential side effects including behaviour changes.
Beth has seen some improvements in her daughter, who uses Ventolin and montelukast, but is keeping an eye on her for potential side effects including behaviour changes.
At the moment she is on Ventolin inhaler and she takes a tablet every night, montelukast. But there is some concern around that medication, the montelukast, just because it can cause behaviour changes, changes in mental health, so we’ve kind of got a behaviour chart that just...I’ve found myself online, just to kind of monitor any differences, any changes, and there have been a few, but not significant, so we’re just kind of...we’re just keeping an eye on things at the moment and just trying to bring it all together. Since starting on the montelukast and the Ventolin inhaler, we have seen some improvements, it’s still there, there’s still difficulties, so she does still struggle with activities, but she can participate more than she was before.
Many felt frustrated that there weren’t more treatments to help young people with Long Covid. Amira’s GP only suggested multivitamins and she felt they could have offered more in the way of treatment. Her mum managed to get her a referral for some counselling from CAMHS (Child and Adolescent Mental health Services). Catherine and also Jana talked about going to Germany to access a private experimental treatment for their children that is not available in the UK. This would be expensive and very hard to arrange the logistics of travelling, but in the absence of any proven effective treatments in the UK, they were willing to try to get help abroad.
Amira’s GP suggested multivitamins and she felt they could have offered more in the way of treatment. Her mum organised for her to get some counselling.
Amira’s GP suggested multivitamins and she felt they could have offered more in the way of treatment. Her mum organised for her to get some counselling.
Have you spoken with any doctors or any other health professionals about it?
Yeah, the GP.
Can you tell me a little bit about that?
They said that like they're going to...like, it gets better by itself.
That it gets better by itself?
Yeah.
Did they tell you what was wrong?
No.
Did they mention the words ‘Long Covid’ at all?
Yeah.
Who was that who said that to you?
The GP.
Okay, did they offer anything that you could do to manage it or anything like that?
They said I could have multivitamins.
Some vitamins?
Yeah.
What sort of vitamins did they recommend?
Like, multivitamins.
Okay, what did you think about that?
I thought it was a good idea, and like I've been having vitamins, but like it’s not really making a difference.
Yeah, and are you eating normally as well, I'm just thinking like with the vitamins?
Yeah, I am.
Yeah. Did they offer...did you get referred anywhere else?
No.
Did you...did they sort of say you know, ‘Come back and we’ll refer you somewhere,’ or anything like that?
No.
Did they give you a reason—well firstly I guess, did you ask for a referral or did you know that there was somewhere you could be referred?
No, I didn't.
Okay, and so did they give any reason like why they weren't going to refer on anywhere?
No.
Just that it got better by itself?
Yeah.
Okay, how do you think how do you think your mum felt about that?
She was upset.
And how often are you seeing the GP about it?
I just saw the GP once about it.
Okay, yeah. Was there anything helpful, unhelpful about the way that the GP talked to you about it?
I think the vitamins helped a bit, but like I think they could have done more.
Yeah. What would an ideal GP visit have been like?
Like, if they would have gave a blood test or something.
Yeah, why a blood test?
Because maybe like something else was wrong.
And why do you think a blood test would show that?
Because like it would show like everything that’s like in my blood and like if anything was wrong they could have like fixed it.
Catherine is taking her son to Germany for apheresis, a private treatment that’s not available in the UK – she says she may even need to re-mortgage her house to fund it.
Catherine is taking her son to Germany for apheresis, a private treatment that’s not available in the UK – she says she may even need to re-mortgage her house to fund it.
So we’re actually about to go to Germany for some treatment which is not available in the UK called apheresis, so I’m hoping that he will improve with that to the point where actually I can go back to my normal work pattern and hopefully he will be able to do a bit more and even go to sixth form college, which would be really nice, but we don’t know what the outcome of that will be. I think we’ll just need to wait and see.
Yes, has that been like privately funded as well?
Yes, so I’ll have to pay for that and it’s not cheap. So, you know, flights, accommodation, and then each apheresis treatment is £1,100. I don’t know how many he’ll need. So, you know, my options are to, I’ve had to save money for him for university, so I’m using that right now. I may need to re-mortgage the house in order to pay for it. So, I’ll just see.
But there’s still really no treatment available. Although you know, sometimes I’ve felt with them treating the PoTS and he’s taking a different tablet now, which helps a little bit. He’s having something to help with his sleep and that’s better, he’s found it a little bit better. And there’s various vitamin supplements as well. But almost no treatment for the actual underlying disease process because they’re not entirely sure what’s causing it. Although there is a lot of new evidence for microscopic blood clots and inflammation of the blood vessels, endotheliosis. And some new treatments being tried, which is what we’re going to Germany for. We’ll have to go and see what happens. But I’m quite hopeful that they have pretty much 100% of their patients have improved some degree or other. Some of them not very much and others very, very much so. We will see what happens.
Jana is considering going to Germany with her son for treatment. She doesn’t understand why she can’t get it in the UK and is worried about the logistics of travelling.
Jana is considering going to Germany with her son for treatment. She doesn’t understand why she can’t get it in the UK and is worried about the logistics of travelling.
Maybe, there is one thing that we are looking into...well, all this research about micro clots. You probably have—you must be aware of it, what’s happening [sighs]. That is really something that… I don’t know how to say, you know we are looking into that option of course, you know you would do anything to make things better, I just can’t understand how people have to go to Germany to get something and we can’t get it here, you know not even privately. People are willing to pay, if you are willing to travel, to pay, it’s not just the pay...to pay, it’s the worst is the travelling, and that’s the biggest issue for us, if we ever have to make the decision that we have to go somewhere, the biggest obstacle is the travelling. You know the money, you might find the money somewhere, and you know as one-off thing or whatever, but to do the travelling is the biggest obstacle for us; we can’t get into the garden, how we going to get to Germany or somewhere else?
So, if we could get it done in UK, I just don’t understand how we cannot get it done in the UK. You know there are quite a few different places in Germany of what I hear, I just...you know we just...I just don’t understand. My friends and family are looking for places in Slovakia where there are some other treatments and tests being done, but I'm asking myself, ‘Really, is Slovakia better than here?’ UK should be a lot more developed in terms of healthcare and you know you've got...I just don’t know even if there is somewhere we can you know go privately, would we be able, from the travelling point of view, to get to that place, to go abroad with his noise sensitivity and vibration? Aeroplane would be out of question. But the journey by car is, you know...so I don’t know what is your opinion, why it’s not happening that much in the UK, what is stopping it getting to that point in UK?
Copyright © 2024 University of Oxford. All rights reserved.