To be really worried-what should she do?

[confusedfamilymember]

I’m concerned about a family member. She’s not my daughter but a very close family member. She doesn’t have the best relationship with her parents and wasn’t directly brought up by them so as a family we’ve always looked out for her.

She hasn’t been very well recently. She’s had debilitating headaches and sickness with it. She’s in her early 20s. She said it started around last summer. Doctors have seen her and the diagnosis changes each time: migraine, sinusitis, glaucoma and anxiety. From the way she described it, it’s clear nobody understands what is going on. She had a blood test which was also fine.

She has asked for my advice as we’re close. I don’t want to step on her toes or get involved in her business, and it’s obviously her decision what happens, but we’re close and she’s shared her concerns with me and asking for advice. She was considering paying privately for a MRI scan and as a family we could easily get it for her but not sure if there was a point- she has had a CT scan already following an entirely unrelated bump to the head when she fell so presumably that rules out any brain problems. She told me that she was told there were no bleeds from the injury, but I am assuming on the CT they would notice any other brain problems. Would an MRI therefore be futile given that the CT scan was healthy? She is not keen to push for tests and of course it is her decision what happens, we are just trying to help her as best as we can. Are there other tests that would be more appropriate?

What about paying for a private neurology appointment? That way she will have a specialist opinion and they can advise if more tests are required.

What about offering if she is willing for you to attend appointment with her. Sometimes going on your own is overwhelming and you forget symptoms/what doc says

I had a private MRI which discovered a brain fluid leak was causing my headaches after 3 months of the doctors not knowing what it was.

Has she had an eye test? They can sometimes spot problems. My own issue was discovered following that photo thing they do of the eyeball. I then got sent straight to hospital.

Yes she has. She knows a lot more about it than I do but that’s where she was checked for glaucoma and sent to the hospital.

I was in hospital for a health issue and given both a CT scan and seperate MRI on my head. I was too unwell to ask why they did both, but that might mean that different things can be seen on the 2 different scans.

We tried but she was happier going herself. It’s tough as we feel she’s being fobbed off but she’s an adult and it’s her decision what to do. We just want her to get better! I’ll ask her next time I see her if she’d like company at her next appointment.

Bump.

Not a medic but agree with pp that a neurology appointment sounds appropriate - they will recommend suitable tests, and interpret results. But it can get expensive if paying out of pocket.

If only able to do one test then, yes, an MRI is a different test to CT and therefore it is probably worth having both. Google will explain the difference better than I can!

Could you suggest to her that while you understand she generally wants to go to appts alone, as there is so much going on it feels like it would be useful for you both to go and see her GP, so you can get an order of actions - ie where would they suggest you investigate and in what order. She can ask the questions (which you can prep together), and you will act as note taker.

Yes, I’ll do that. Good idea. I think she’ll be happy for me or someone else to come along.

Neurologist appointment sounds like a good idea. I’ll pass it on to her and see what her thoughts are. It’s been utterly miserable for her.

She said she was told that her brain was clear after the CT scan, does anyone else understand and would be able to explain the difference between the MRI? I understand they are different types of scan, and she said that the CT scan was due to an unrelated head injury. So can we be sure that her brain is clear and healthy since the CT was ok or could it have missed things?

An MRI scan will show much more detail than a head CT can. I’d pay for one privately of I was concerned.

However she will need to be under the care of a neurologist so that someone can interpret the results of any further scans or investigations she has done

Sounds like migraine.

Yes, it definitely could be migraine. I’m not a medical professional but she said she has been told it could be migraine. It was the vomiting and certain things about the headache that were worrying us and the glaucoma too. As I said, I’m no healthcare worker, and I’m not sure if these are classic migraine things, I’m just a concerned family member who wants what’s best for her.

Giving this another hopeful bump in case anyone in the know is about.

Ct scans are better for hard structures in the head (ie bones etc). MRI scans are better for the soft tissue (ie the brain), any bleeds, masses etc, as show much more detail. If the ct scan was normal I'd still want an MRI (am a vet) personally, but like others said just getting the test without somebody interpretting the results is no good, so go to a neurologist and discuss with them and ask for a private MRI scan

I will recommend that she sees a neurologist for reading the test results. I think she was going to do that anyway but I’ll speak to her about it this weekend.

I am by no means in the know about anything medical so forgive me; if a CT is useful for hard structures, can problems with the brain be ruled out? I know she was relieved after the CT; she told me it was for a once over after she had a fall however presumably they would have picked up any problems with her brain whilst checking it. Is it likely something could have been missed by the CT and picked up by the MRI?

Of course, this could all be migraine and may well be. She told me that has been mentioned to her already. We believe that she is being fobbed off but obviously that’s not our call to make.

Another hopeful bump in case anyone knowledgeable or experienced is around.

Has she kept a diary of her headaches to look for patterns or triggers? And has she been prescribed any migraine medications which have or have not helped?

It might well be worth booking an appointment with a private neurologist but they will want a lot of information so it will be wasted somewhat if she isn’t able to provide it. Also is there any link to her menstrual cycle?

Lastly neurology is a diverse specialty so ensure you see a headache/ migraine specialist. If you are anywhere near London the Queen Square private clinic is very good. If they feel further scanning is appropriate I’m sure they will recommend it. Beware a top dollar MRI with contrast dye will probably be £1000 or so plus the consultation and further follow up so do be sure that the GP has done all they could first.

I’m not sure, I’ll check with her when I see her this weekend. She was but didn’t find it helpful. I know she takes medication for glaucoma so unsure if that’s the same medication for the headaches.

That’s good to know. I’ll speak to her at the weekend about it. She mentioned that she was thinking about seeing someone else about the symptoms as she is getting nowhere with her GP. I unfortunately don’t know about any menstrual cycle problems. She hasn’t mentioned any to me about it. We just want to help her as best as we can.

Definitely worth tracking headaches to her periods as they are often hormonal. Doesn’t necessarily mean she has problem periods.

Anyway encourage her to gather as much information as possible to make any appointments as useful as possibleAlso check out The migraine trust for more advice.

Does she actually have glaucoma? It’s very unusual and n someone so young? I get it that she was investigated but actually diagnosed? To get the most benefit from any doctor she does need a clear and accurate history. Maybe you could help her with that? Include all dates, symptoms, investigations and treatments. ( but keep it brief!)

I came down with headaches before Christmas last year. They did a CT scan to rule out an aneurysm and suggested it was a sinus problem. Are the headaches particularly better or worse upon lying down or being upright? Mine disappeared upon lying down. I got a referral to a neurologist and we did an MRI of the brain which showed sagging caused by leak of CSF fluid from a condition called Spontaneous-intracranial-hypotension. Then we did an MRI of the spine to locate the leak. This was all done private though via health insurance so not sure how easy it would be to get this treatment on the NHS. These were low pressure headaches but you can also have high pressure headaches which can be more serious and need special medication or, in some cases, surgery. I would think an MRI under a neurologist could clarify.

I believe so although I’m not clear on the details. I know that she had to go to the hospital and they gave her medication for glaucoma. She said that one of the tests they did showed a very high result so she had to go to the hospital straight away to get it checked out and glaucoma was mentioned I believe. She is much more knowledgeable about it than I am! I’m just posting here as I’m concerned about her.

A ct may show some issues in brain, but definitely not all. An MRI is much more detailed and would pick up things you cannot see on a ct. So if the ct isn't showing anything and the symptoms persist an mri might be in order. Hopefully it's nothing, stressing/worrying about it is likely not helping either so if she can afford one it might be worth it just for her peace of mind.