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Constant nausea and now headaches

12 replies

Throwaway454 · 03/02/2025 10:27

Different username for this as may be identifying.
Has anyone had a similar experience and could suggest possible diagnoses that we might not have thought of? Sorry it's long. Trying not to leave anything potentially relevent out.

DD (age 11) has had nausea 24/7 for 4.5 months now, and has started getting daily headaches too. The nausea is at the top of her stomach. She can eat in general, but sometimes can only face a piece of fruit, other times she can eat more normally.
She has been trialled with gaviscon, lamprezole, anti nausea meds (antihistamine), all with no benefit, and just started an anti migraine tablet but will a few weeks before we know if it's making any difference. She has experienced loss of vision several times since September for a few seconds at a time (eyesight fine, neurological exam normal) Also has developed asthma in last few years (diagnosed by prescribing inhalers and seeing if they work.) and had pneumonia a few times. Also feels she gets a pins and needles and cold hands/feet a lot. Dr wasn't particularly interested in that symptom - said neuro exam was fine? (I was thinking circulation, but I'm not a Dr!)

She currently in a gluten-free, acid-reflux friendly diet which has reduced the severity of the nausea on the most part. (Celiac ruled out by blood test before she went gf)

Initially she was getting unwell every time she visited her dad - massive flare ups of eczema all over her body, nausea, headaches, and sometimes fever and vomiting (in a disproportionate number of times Vs when not with him). I tried everything I could think of to support her being able to visit (per her wishes) but also be well - advising on food, cleaning products etc that we used at home so I knew would be ok for her. Also asked him to check for mould etc. then I started providing what was supposed to be all the food, but good chance he was sneaking in some junk- the youngest told me a few times. ("Dont tell your mum!")

By September it was a half day visit and I provided all food, picnic style (again, good chance he also fed them something else too) but she still got intensely ill - probably the worst reaction she ever had. I'm so angry with myself for not stopping contact sooner but that would have been against their wishes so I was reluctant and didn't follow my gut. He's a manipulative man and I feared it could get worse in the long run.

Initially it was put down to anxiety - transfer test for high school, stuff with her dad, but I didn't feel it was, and stated so, but did arrange counselling for both kids. She didn't feel it was anxiety either. She swanned through the test and had an incredible mark despite being very unwell during both tests so much so she just went to bed after them rather than celebrate with friends.
She's had to give up swimming, gymnastics and performing arts school. She's barely making it to school 50% of the time.

For context :
Her younger sister also developed gastro issues, not as severe but was on medication. Now they have had no contact she was quickly able to stop all medication and I feel has been quite different personality wise, in a good way.

Her older sister (not same dad) has CFS/ME and something like POTS, but not yet diagnosed. She was 12 when it started, we feel it was triggered by HPV vaccine which stressed her system. She's pretty much housebound now and I'm here carer.
Dd11s symptoms are not identical but it does give me extra concern there may be some link.

OP posts:
Spaghetticonfetti · 03/02/2025 12:00

Your poor DD. Has she had a brain scan? That would be the next thing that I would be pushing for. My DD had headaches and stomach aches, but she was coeliac - which I can see has been ruled out by tests. I would push for a scan.

Mumof1andacat · 03/02/2025 12:22

Has anyone mentioned an abdominal migraine? Can her consultant refer her to clinical psychology at the hospital? They can be very use at helping manage the psychology side of symptom management

Throwaway454 · 03/02/2025 12:27

No, no brain scan. Took 4 months to see a consultant (12 days ago), so they still deem it to be early days. They did a neuro test involving her resisting them pushing her limbs, and moving their fingers in her field of vision so seem to be saying that rules out anything with her brain. She also hinted at anxiety, but I shut that down, other than potentially stress at being so unwell all the time.

OP posts:
Throwaway454 · 03/02/2025 12:32

Stomach migraines havent been mentioned , but I had looked into it - it's typically around the belly button whereas my dds is higher and not typically sharp pains.

Initially I thought some kind of acid-reflux/ulcer but drs saying if it was the case then it would have felt better with the meds she's already had. Acidic foods cause her nausea to increase though.

OP posts:
dizzydizzydizzy · 03/02/2025 12:42

I was actually wondering about ME before i read the bit about her sister having ME.

BlackSwan · 03/02/2025 12:59

I would be pushing for an MRI as a previous poster suggested.
There are enough flags to warrant it.
Has she seen an ophthalmologist? That would be a good idea too as tumours can cause visual issues which ophthalmologists can detect. Speaking as parent of child who had a tumour diagnosed after ophthalmic & other issues.
HeadSmart - HeadSmart

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https://www.mybrainfirst.org/

Nogodsnomasters · 03/02/2025 15:18

I would be pushing for an endoscopy if it was me, younger children they can give general anesthetic to so she doesn't have to be awake for it like adults, this can then check for GERD, ulcers, gastritis, they can also take biopsies for coeliacs and H.pylori. I know the coeliacs test was negative but the blood test on those are notoriously wrong and very common to get a false negative, but she would have to eat gluten again before the endoscopy. Does she have any problems with her bowels? Has she ever been offered a stool test?

Throwaway454 · 03/02/2025 15:35

Thanks to everyone replying.

She doesn't have the severe fatigue, brain fog or muscle pain of ME (thankfully)

She's had a stool test, and bowels are normal. She lost weight initially but when we went gluten free she gained it back as nausea was less. Because she is a normal weight and height they are reluctant for anything invasive there, which is understandable, but at same time we are getting quite desperate.

Will look into opthalmologist and ask re MRI.

Was considering restarting her on gluten a little as a test over half term next week as it was suggested by dr it may be a temporary intolerance due to the extended period of antibiotics given during last bout of pneumonia. (I struggle with dairy after antibiotics, even if using probiotics - takes a month or so for me yo get back uo normal)

OP posts:
endofthelinefinally · 03/02/2025 15:47

Have you and ex both got functioning carbon monoxide alarms installed? (If you have gas boilers of course).
Has your dd had stool tests for parasites of all kinds? Any travel abroad?
Hopefully your gp will have checked all of the above.

Throwaway454 · 03/02/2025 22:18

Re carbon monoxide - fully working alarms here and she hasn't been at his since September. Plus noone else having these symptoms so can't imagine it's that anyway.

Def hadn't thought of parasites. Haven't been abroad in a few years, and not sure enough symptoms match.

OP posts:
Febbers · 04/02/2025 10:17

Your poor DD. I have some of these symptoms as a result of a covid infection. Nausea, headaches (not constant - just when overdoing it), pins and needles (started after second covid infection), POTS, random rashes, cold extremities. Lots of people have food intolerances after. If it was triggered by covid or another virus, might be worth looking at one of the long covid kids groups to see if anything has helped others. Hope you get some answers.

Avastmehearties · 04/02/2025 10:28

I think a brain scan should be your priority to rule out any lesions. A neuro exam isn't definitive. Loss of vision and sensation change as well as nausea and headaches are a good indication for this. Hopefully nothing of this kind but I'd push for it just in case. Then look at other possible causes.

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