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.

Your post is a very good example of why it's not a good idea to guess someone's health condition.
IHT causes characteristic changes at the back of the eye that are very very obvious and wouldn't be missed on an eye exam or when seeing an ophthalmologist

Oh and OP - I'm sorry, I have no idea, it could be one of an awful lot of things. She needs to go back to the gp.

OP, you need to realise that no Healthcare Professional will give advice without

a) knowing the full picture including
b) having the informed consent of this person.

Please seek help outside this forum.

Glaucoma is v rare in your 20s. Are her pressures controlled now? She can just go to an optician to have them checked rather than wait for ophthalmology appointments.

DH developed glaucoma v young, it is usually asymptomatic but when he had a spell of uncontrolled pressures he had headaches.

She needs to be absolutely religious about her eye drops as she will have glaucoma a looong time and needs to hang on to her vision.

I didn’t guess any health condition at all. I stated I seconded that the person should get a referral to a neurologist and I listed another possible health condition as of yet not mentioned.
I second seeing a neurologist. This is another possibility not yet mentioned.

In fact it is YOU who is guessing at a health condition by trying to rule out a possibility. By the way you are wrong to say this:
IHT causes characteristic changes at the back of the eye that are very very obvious and wouldn't be missed on an eye exam or when seeing an ophthalmologist

Would not be missed? A poster on this thread has IIH and was told that it is frequently misdiagnosed as glaucoma. So obviously, it is missed upon occasion: 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..

So to recap, I haven’t guessed at a health condition. I have recommended seeing a neurologist and added a possible health condition to a list of many suggested possibilities given on this thread. It is YOU who are guessing at health conditions by actively trying to rule out possibilities. 🤷‍♀️

If the CT was for an unrelated issue the perhaps wouldn’t be looking for issues related to the current issues. An MR scan gives clearer pictures. If she goes back to GP she should ask for an urgent brain MR scan

I would focus on the glaucoma; acute glaucoma can cause a rise in eye pressure / severe headache/nausea. It is a threat to the optic nerve, from the damage cause by pressure. (I'm astonished a GP with a newly diagnosed glaucoma patient, wrote off the headaches as migraine. )

Given her previous glaucoma diagnosis it's possible the previous treatment has failed and if so she needs urgent examination now. I'd call her optician and request an emergency appt to get her eye pressure and retinal scan repeated. If they tell you to go to A and E, don't delay.

Radiographer for 33 years (including CT) with 26 years of that specialising in MRI. Have performed thousands of MRI and CT scans, and looked at hundreds of thousands of images during that time.

JackiePlace said that a CT for injury only covers part of the brain. I don’t know of any centre where that would be the case, as an injury to one part of the head can lead to brain trauma at a different site. Neither should it mean that further investigations aren’t required, as MRI can show the brain (both structure and function) in much more detail - hence my suggestion to the OP to persevere.

And I couldn’t make much sense of your explanation of CT vs X-rays, which was irrelevant anyway as I don’t think anyone was suggesting X-rays should be done.

I don’t doubt your ability to write an academic essay on the subject though. Just as I’ve spent many years explaining the same thing to people in real life.

Sorry, the above post was in answer to @sashh

Well that's the difference isn't it?

You know how to operate the equipment, I know how to build it.

I would post here too if it involves health of a loved one so ignore those slating you for it.

1: If you want this dealt with asap, arrange an appointment at your local prívate hospital for her to see a consultant neurologist.Go with her if she’ll let you.

2: If money is an issue then she should ask to see a different GP for a second opinion and ask for a referral to a neurologist, stating concerns that a BT needs to be excluded.
Go with her for back-up if she’ll let you.

I would urge her to go back to the GP and insist on being referred to a neurologist and an MRI to investigate her migraines properly - they will ask questions to rule in or out risk of other factors. Ask how long the wait list is and say how severe the headaches are with vomiting.

That is the only way to be more certain about what the diagnosis is.

@sashh

Exactly. You carry on being an expert on the theoretical side of things in your workshop, I’ll carry on clarifying clinical imaging protocols to the general public (AKA Mumsnet) when confusing or inaccurate statements are made.

I’ve worked with many medical physicists. None of them would have set themselves up as pre-eminent in the practical clinical applications of medical imaging, that wasn’t their area of expertise. But then we tended to use a collaborative approach, so obviously things may be different where you are.

@Onnabugeisha You wrote an entire post about an eye condition you clearly know nothing about that the OP cannot possibly have. Just don't post if you're not sure.

OP - It may just be the glaucoma, but everyone is guessing and she needs to be seen.

I don’t actually know much about the glaucoma as she didn’t really want to talk about it. I think she is trying to pretend it’s not happening. All I know is they tested her for it and it was too high/big - I think she said the test was supposed to be below 20 and hers was above 40? Those numbers mean nothing to me so I may have picked her up incorrectly but she said it was too high hence finding out she had glaucoma.

You don’t know that her family member can’t possibly have it. No one can know as no one can examine their eyes or do any medical tests through their screen.

I see you are conveniently ignoring the poster who has IIH but was misdiagnosed with glaucoma and was told by the hospital that IIH is often mistaken for glaucoma. The OPs relative has been diagnosed with glaucoma.

I didn’t write the part of the post about the condition of IIH, btw, I cut and paste from the NHS webpage on IIH (and linked to it as a reference), so your saying what I wrote shows “I clearly know nothing about” IIH- you’re actually saying that about the doctors that wrote the information for the NHS webpage on that condition. 🤷‍♀️ I suspect you are the one who knows nothing about IIH as you spelled it “IHT” 🤣

I have to think you have something against me personally because why object to my post at all? It is no different from any other recommendation that OP’s friend see a neurologist with a suggested possible health condition it might be.- including YOUR post suggesting it “may just be glaucoma” but “she needs to be seen”

How is she now @confusedfamilymember? Any nearer finding a cause?

Unfortunately not.

She’s still unwell but absolutely will not go back to the hospital. She said she is worried in case they become cross with her for going back so often.

She’s been complaining of a ‘dead feeling’ down one side of her body at times although I don’t know which side and for how long. She just briefly mentioned it.

She also has different sized eyes now although she said this was checked at the hospital and once again they’re not concerned about it. I don’t know very much about the exact details of this as she didn’t want to discuss it, but one of her eyes no longer becomes ‘smaller’ when there’s a light around.

I’m going to suggest this to her although she mentioned recently that she was already considering it. I’m not sure if she has booked anything yet. She absolutely needs to be seen (and taken seriously) by someone.

@Onnabugeisha Sorry I missed this, the haemorrhages seen with intercranial hypertension are similar, but in different places to those seen in glaucoma, you also don't get the dramatic increase in intra ocular pressure.
It's never a good idea to guess as it dilutes the good responses on health.

@confusedfamilymember she needs to be seen, would she be happy to go back to an optometrist? We can often refer back if symptoms persist or (for example) visual field damage to an eye is getting worse.

Having IIH myself I think it can be missed from eye exams. There is a lot of controversy over whether papilledema should be a requirement for diagnosis and many people who have all the other symptoms struggle to get more tests if it is not detected but still turn out to have high pressure

That said I think she needs to be supported and encouraged to press the doctors for more help. Headaches are caused by so many things. It's easy to assume no help is available but that is rarely the case

If she won't go how will she be seen? She needs to contact her ophthalmologist, she's been seen in the eye dept she needs to go back. If she doesn't go back noone can assess her. Shes being ridiculous

She didn’t want to go to A&E. She has been to Ophthalmology many times already.

She’s not being ridiculous. She’s been told different things by different people and she said she felt dismissed by one particular doctor (I’m unsure which appointment this was as she went alone) and it has completely put her off going back for help.

She’s young and feeling unwell so it’s not exactly rocket science to see why she would be reluctant to go back.

Just posting an update after speaking to her at the weekend.

Her optician checked her eyes again- she said that her optician has been brilliant throughout this all. She has a copy of a written referral letter now which she showed me, so she can now be seen either on the NHS or privately. She said that she wants to be seen privately.

She showed me her letter; she has a RAPID in her pupils in her eyes now. I’m not medically trained and my understanding of this is limited to information from Google but from my quick search it seems it’s a complex problem. Her glaucoma pressure behind her eyes is still high too according to the letter.

Unfortunately she seems to have it stuck in her head that she is being a time-waster and will not go back to the hospital for it via the NHS. I love her but she is bloody stubborn when she digs her heels in. Kids/young adults, eh! In fairness, I think she is genuinely frightened of coming across a dismissive doctor again.