Please read! Any doctors/nurses/opticians on here?

[confusedfamilymember]

Posted before but posting again for traffic- apologies, hope that’s allowed.

I have a close family member who has been unwell recently. We are worried about her and feel she needs more help than she is getting. We are trying to help as much as possible without stepping on her toes as she is an adult. If anyone can offer any advice or knowledge about what we could do as a family to help her it would be greatly appreciated. I will include all the information I’m aware of.

She would kill me if she knew I was posting on here so I will keep it as anonymous as I can!

She is in her early 20s and has been getting headaches. I’ve seen her with them and it’s awful. She throws up and is almost hitting her head off the wall with the pain. I don’t know how often exactly it happens but it is very regularly. She said it started around summer time. I don’t recall her being prone to headaches or sickness before then. She has had eye tests and she said her eyes are fine apart from finding out she has glaucoma- she had to go to the hospital straight away as the test for glaucoma was so high. She takes medicine for glaucoma now but she said the headaches and sickness are still happening. I believe she has been back to the doctor who told her it was migraine but she said last weekend that the medication she was given has not helped.

As her family we are obviously concerned and hate to see her unwell. I am by no means a healthcare professional but she seems very young to have glaucoma and headaches with sickness.

Incidentally she had a CAT scan after an unrelated injury which was fine. Is it fair to assume they would have picked up any brain problems on that scan? As I said I am not a healthcare professional but as a family we were worried about something serious. Would a CAT scan have ruled this out? Should she be asking for an MRI scan or another test?

She seems happy to involve us and tell us about it, but ultimately it’s her decision what to do going forward. She won’t admit it but I can tell she is feeling down about having no real answers or help. We wanted her to be referred for further help for her headaches but she said that the GP said it wasn’t needed. I don’t know what else they recommended as she hasn’t told me, but she did say that the GP wasn’t worried.

Has anyone any knowledge on this type of thing? Or what we could do as a family to help and support her? She said she feels like she is expected to live with it and these headaches and sickness are now part of her everyday routine. We just want to help her but don’t know the best way forward.

She hasn’t complained about it specifically but as a family we have also noticed how tired she is recently. She’s fit and sporty yet is always napping and dozing now. I know she had a blood test recently which she said was healthy, although she didn’t say what exactly was tested.

I have tried to include as much information as I can, if anyone has any knowledge or experience I would greatly appreciate it. We just want what’s best for her.

I’ll pass on all advice to her. The last half a year has been awful for her and all we want as a family is to see her get better. How a doctor can tell a 24 year old that headaches and vomiting isn't a concern I just can’t understand.

I appreciate she's an adult but she is a young adult who is unwell. What is she like personality wise? Does she have the sort of personality where she would be comfortable pushing back against a dismissal from a GP? And even if she normally would be able to, is she currently able to do that given how unwell she is feeling?

Have you/other family members offered to go with her? Often when I was a younger age I would either downplay symptoms or just accept being sent off because I didn't want to make a fuss. There was one occasion where my mum came with me to stress how seriously unwell I'd been and it got things moving.

As I say, I appreciate she's an adult and may not want/need people at her appts with her, but it was just an idea.

Could it be hormone related? Brain tumour? Pituitary tumour? Has she been checked for epilepsy?

I completely agree with you- I was exactly the same at that age.

I think she’s secretly frightened of what is happening and doing everything to tell herself that it’s fine. I’ve seen her very unwell then completely downplay how bad it was once feeling better. She has continued her working and social life around it all and seems to expect to have headaches and sickness now as the norm. It’s as if she’s lost sight that other people don’t have that.

We have offered to come but her appointments have frequently been on a same day/emergency type and she has only told us about it afterwards. I think it would be beneficial if an older and more experienced adult went with her as sadly that may be what it takes for her to be taken seriously.

I second seeing a neurologist. This is another possibility not yet mentioned.

Idiopathic Intracranial Hypertension (IIH), a rare and debilitating condition that raises pressure in the brain and can lead to people, usually women, suffering chronic headaches and even permanent sight loss.

Symptoms of chronic intracranial hypertension (IH) can include:

a constant throbbing headache which may be worse in the morning, or when coughing or straining; it may improve when standing up
temporary loss of vision – your vision may become dark or "greyed out" for a few seconds at a time; this can be triggered by coughing, sneezing or bending down
feeling and being sick
feeling sleepy
feeling irritable
Chronic IH can sometimes result in permanent vision loss, although treatment can help to reduce the chances of this happening.

Idiopathic IH
In many cases, the cause of chronic IH is unclear. This is known as idiopathic IH, or sometimes benign IH.

It mainly affects women in their 20s and 30s, and has been associated with:

being overweight or obese – most cases happen in overweight women, although it's not clear why
hormone problems such as Cushing's syndrome, hypoparathyroidism, an underactive thyroid (hypothyroidism) or an overactive thyroid (hyperthyroidism)
certain medicines including some antibiotics, steroids and the combined contraceptive pill
a lack of red blood cells (iron deficiency anaemia) or too many red blood cells (polycythaemia)
chronic kidney disease
lupus – a problem with the immune system
But these are only linked with idiopathic IH, they're not necessarily causes.

Tests for chronic intracranial hypertension

A GP may suspect you have intracranial hypertension (IH) if you have symptoms of increased pressure on your brain, such as vision problems and headaches.

You may have several different tests to diagnose IH, such as:

an examination to check functions such as your muscle strength, reflexes and balance. Any problems could be a sign of an issue with your brain or nerves
an assessment of your eyes and vision
a CT scan or MRI scan of your brain
a lumbar puncture, where a needle is inserted into your spine to check for high pressure in the fluid that surrounds your brain and spinal cord
Idiopathic IH may be diagnosed if you have increased pressure on your brain and no other cause can be found.

www.nhs.uk/conditions/intracranial-hypertension/

If you are worried about a tumour she needs an mri
if I was her - I would find a local neurologist who also works for nhs and pay for appt. If they think she needs an mri they can refer back to nhs for treatment.
my daughter developed migraines and it was PoTS worth googling that

Also has she become a vegan lately? Low b2 found in diary can cause migraines too

I don’t believe she’s ever been tested for epilepsy, although she hasn’t had any seizures as far as I know

@confusedfamilymember I believe there is a form of epilepsy that shows as headaches and she may be unaware that seizures are happening as they are taking place deep within the brain. Am not medically trained but have read something about this in the past. May be worth looking into or mentioning to doctor. Have they done bloods to check hormone levels etc
Are the headaches every day? I would maybe keep a record of them.
i would also be seeking a referral to a specialist and pushing for a mri of head/brain. Good luck i hope she gets some answers

As far as I know she hasn’t changed her diet at all. I don’t see her everyday so it’s hard to tell, but I do know that she’s not a vegan.

It sounds very much like cluster 'headaches'
They are nothing like a headache and are off the scale to a point where you can pass out with the pain. I have two relatives who have them (gentic)
If possible she needs to be filmed while having an attack. There are only a handful of cluster headache specialists and this is the best way to rule it out.
It can be treated with oxygen.
Find a special yo as gp to refer. If they're far away they may do a federal via video and look at the footage she provides. I'm

I would trust the GP. You don’t know the full story of what she has told thecGP, the tests and the test results OP. The GP does and has medical training and experience.
Quite rightly, people can’t just insist on an intrusive investigation and get it. Radiation from scans and X-rays is harmful. Harm is done from unnecessary investigations. The NHS would be overwhelmed too. There has to be gate-keeping when it comes to referrals and investigations.

That is true. It’s hard to keep perspective when it’s your family member unwell I suppose. Where does the gate-keeping end though? She’s in her early 20s and is expected to get on with headaches and sickness every other day and now glaucoma too.

I’ll mention cluster headaches next time I see her. Can it cause glaucoma too?

As a previous poster posted above ⬆️ about the IIH, I had very similar symptoms to what your family member does (I’m so sorry to hear she is unwell!) I had throbbing headaches, nothing would take the edge off! I then started vomiting (because the pain was so bad) I had darkening of the eyes every time I bent down or stood up..

I was diagnosed with what the above poster has stated about IIH.. I suggest your family member going to the opticians to have a scan of the back of her eyes/a pressure test.. they found this straight away with me and I was literally seen in the eye hospital within the next two days! It was classed as emergency.

they say high pressure (which is why it was urgent referral) can be signs of a blood clot etc which can cause the pressure on the nerves in the back of the eye.. obviously this isn’t always the case but always best to be checked.

I was sent straight to hospital for an MRI scan and a lumbar puncture to test the pressure from the fluid in my spine..

obviously I’m not saying this is definitely the case, this is the only knowledge I have other then being a migraine sufferer to! (They are horrible to and can cause pounding headaches/vomiting)

also make sure she pushes for a referral for an MRI scan! I really hope she gets better soon/manages to find something to help her!

with you mentioning glaucoma, the medication they give me also is given to patients who suffer with glaucoma, I was told when attending the hospital that with IIH quite often it can be misdiagnosed and sometimes mistaken for glaucoma due to the pressure build up..

i’m not a medical professional, just giving information in regards to the condition incase it’s any help! Xx

My first instinct is she needs to be rechecked urgently by an ophthalmologist to make sure the glaucoma meds have reduced the pressure in her eyes to an acceptable level. You haven’t mentioned whether she’s had much follow up with that but that’s the first thing I’d do.

Then she does need to go back to the GP, if that’s not the problem. A different GP perhaps as any doctor worth their salt would not be advising anyone that they should just be living with that sort of life limiting pain. I don’t think putting differential diagnoses on here is helpful - she needs to be seen in person by a doctor and get it sorted. Difficult to be assertive I know (and very difficult for you to get her there) but it’s not right and it’s not normal and she has a right to get it sorted out.

I would trust the GP. I wouldn't trust one as far as I could throw him! My friend was finally diagnosed with a brain tumour after being fobbed off for over a year by her GP. The stupid woman even said it was just depression and issued a Prozac prescription! TRUST YOUR INSTINCTS

Could possibly be a carvernoma.

haemorrhages
seizures
headaches
neurological deficits such as dizziness, slurred speech, double vision and tremors
weakness, numbness, tiredness, memory and concentration difficulties.

Ask the optician about toxic optic neuropathy - it needs a further test (scratch test) to distinguish this from glaucoma.
Mine was due to an inability to absorb B12 (pernicious anaemia) but my optician reckons there will be an upturn in cases due to vegan diet sometimes not being supplemented.

where on her head are the headaches located?

Unfortunately the wait times for neurology (as with most things now) can be so long, but definitely worth pushing to get on the list anyway.

I say this as a neurosurgery patient with a brain chiari malformation - also a possible cause of headaches and sickness!

@sashh , @JackiePlace and anyone else who thinks they know more about medical imaging than they actually do - please don’t make inaccurate statements about what CT scans do and don’t show.

OP - her symptoms are worrying and need to be followed up. Obviously difficult if she herself is in denial.

Don't be so rude. <Checks medical physics qualifications - yep still got them>

I could have written an essay about helical computed tomography v projectional but I doubt that would have been any use to the OP.

The whole point of CT is that it looks in detail at the structure that is being scanned by taking slices of projectional AKA conventional radiography.

@JackiePlace gave her experience of having one. She didn't say she was an expert.

What exactly do you know about the subject?

She needs to contact her eye dept where her glaucoma was diagnosed, repeated angle closure glaucoma causes vomiting, horrendous headaches etc and follow up tends to be every 6 months if asymptomatic but if having symptoms they will be best placed to investigate and can do optic nerve scans and refer for MRI if concerned it's neurological

I've also had IIH. I remember sitting in my lounge on the floor absolutely howling with pain and because nobody including my GP would believe there was anything wrong. I'd recently had a miscarriage and they said I was depressed . . ..

So it's worth getting a referral to a neurologist.

Look up intercranial hypertension. From memory it affects young women the most. I've a friend who has it, she eventually had to have a shunt fitted to drain the excess CSF and hasn't had problems in over 15years now.