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Persistent nausea after glandular fever

11 replies

spiderlight · 21/03/2023 12:39

DS (just turned 16) has felt utterly dreadful since mid-February. It started very suddenly with severe nausea and general fluey/headachey symptoms (but no high temperature, weirdly). He was in bed for several days, slept most of half term, and then everything started to gradually improve apart from the nausea, which is still horrendous, especially in the mornings. He's only managed three full days of school since 13th February and I'm panicking a bit because he has his GCSEs starting in May.

We've been to the GP umpteen times and he's had several lots of blood tests, the most recent of which came back yesterday showing a recent Epstein-Barr infection and elevation in one of his liver enzymes. The GP thinks this explains the nausea, as everything else has come back normal apart from low vitamin D, which he's now taking supplements for. He's tried Buccastem (didn't work), Cyclizine (works a bit by about lunchtime but makes him very drowsy), and has been given Ondansetron today, which the GP thinks will hopefully work better and be less sedating. I'm just wondering whether anyone else has experienced similar, what helped, and how long it took to ease.

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dollypartin · 21/03/2023 12:43

He might be at risk of M.E. Make sure he rests completely or he could do himself serious damage.

spiderlight · 21/03/2023 12:48

I will, don't worry. I was diagnosed with ME myself in my 20s and I've never been the same since, so I'm not risking that for him.

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spiderlight · 28/03/2023 13:37

Shamelessly bumping to see if there are any others with experience and positive outcomes! DS has now been referred to ENT for vestibular testing because his nausea and dizziness aren't improving at all. It might be something like vestibular neuritis triggered by the glandular fever. He's also been given Metoclopramide to start later today, as the Ondansetron wasn't effective after the first day or two and gave him terrible headaches. Bit scared of the Metoclopramide though :(

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Fam23 · 28/03/2023 23:04

Your poor son, I have no personal experience but looked after a lady in her early twenties who had been admitted to hospital with glandular fever as her liver function was so deranged. She was terribly nauseated and we felt it was due to the deranged liver function. Has his liver function been rechecked? Was also going to ask about vestibular testing so hopefully he’s seen quickly by ENT.
Has he ever received treatment for labyrinthitis?

spiderlight · 29/03/2023 00:03

Yes, his liver function was checked a couple of weeks back and is ok apart from one enzyme that was 'marginally elevated', which might be contributing. He's seeing an ENT consultant on Thursday (we were basically told we could wait months or go private and we need to get him sorted) and will hopefully get some testing/answers from that. I've had vestibular problems myself for decades - vestibular migraine in my case, though - so I know how dire he must feel, although the metaclopromide has helped a bit this evening. Rotten illness, rotten timing! 😣

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Castlereagh · 29/03/2023 07:35

Wow they're prescribing some really strong meds without seeing a specialist. Has anyone suggested an MRI scan of the brain at all?

Castlereagh · 29/03/2023 07:36

I'm wondering why they are prescribing metaclopramide, is the nausea stopping them from eating or moving around?

spiderlight · 29/03/2023 09:06

He's been off school for six weeks because the nausea is so severe and he needs to get back because his exams start in May and he's desperate not to have to delay them for a year. He's still eating but only very very bland foods, and it's having a massive impact on his life - he struggled with a very short car ride to the GP yesterday. He started out with Buccastem, which made him feel worse because of the constant taste in his mouth. Cyclizine worked reasonably well for a few days and then became slowly less effective. Ondansetron worked a bit better but gave him awful headaches and gut problems. I'm hoping the Metaclopromide will be a very short-term stop-gap - he only started it yesterday and he's seeing the specialist tomorrow. They haven't suggested an MRI but it's been on my mind so I will ask tomorrow.

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spiderlight · 30/03/2023 13:45

OK, so the consultant we saw today examined him thoroughly, especially his throat, and has said that he has GERD, which is causing the nausea, and that the acid might be irritating his inner ear or the dizziness might be a side-effect of the nausea meds. He's told us to give him Gaviscon Advance after every meal and at bedtime, and to carry on with the metoclopramide for a couple more weeks to ease the nausea and slow his gastric emptying. He's organising tests for H. Pylori with our GP as well. He doesn't think the slight elevation in one of his liver enzymes is relevant and is confident that if he sticks with the Gaviscon and the advice he's given him about not lying down after meals and raising the head of his bed slightly, he'll start to feel better in a week or so and be fine within four weeks, which is great news for his exams. Not at all what we expected but he said it was obvious from looking at his throat and listening to his voice that there's a load of acid involved, even though he doesn't have the classic heartburn sensation. Fingers crossed that this is the answer - most expensive bottle of Gaviscon in the world if it is, but it will be worth every penny!

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Castlereagh · 30/03/2023 21:05

That's interesting and hopefully easily resolved then. I guess I'm just a little bit dubious as to why omeprazole hasn't been recommended instead of gaviscon advance...I guess maybe because it would interact with the metaclopramide? And not really sure why metaclopramide is being continued, metaclopramide does speed up gut motility and back in the day they used to give domperidine for reflux in children which also increases guy motility...until they realised it had effects on the heart.
I just think usually if there's suspected reflux, the first line treatment would be omeprazole, and you would stop the metaclopramide. Gps usually don't prescribe it for longer than 5 days, even children with chemo nausea are not recommended to take it for longer if they can cope without.
Did his dizziness start before any antisickness drugs?

spiderlight · 31/03/2023 07:37

You can't take omeprazole for 14 days before the H. Pylori stool test, but we'll ask about it once that's done.

It's hard to pinpoint exactly when the dizziness started because he was so generally unwell initially, but the nausea definitely came first and he thinks it was when he started cyclizine that he got really dizzy. We did try taking him off nausea meds entirely last weekend to see if the dizziness would resolve, but he was utterly miserable and begging for them back within 24 hours. I'm desperate to get rid of the metaclopromide, believe me, but I'm sticking to what the consultant says for at least a week to let the Gaviscon start working. He's got a load of literature to follow as well. Going to raise the head of his bed over the weekend.

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