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Original poster

So worried can anyone help

54 replies

Singlemum31 · 17/08/2020 17:15

I've just been to specsavers where they referred me by emergency to the neurological team has I have swelling behind my eyes.
I've done the stupid thing and looked at Google and it's not good. All I can think about is my kids my youngest isn't going to remember me worst case scerino. It's amazing how life can change just like that. Was just going specsavers 😭 anyone been thur this am I overreacting?

OP posts:
Original poster
Singlemum31 · 17/08/2020 17:42

Literally no one to talk to...

OP posts:
toomuchlikemyusername · 17/08/2020 17:44

Hello there.

Just handholding until someone comes along who might be able to offer some words of advice.

Do you know how soon you will be seen?

Sending unmumsnetty hugs in the meantime.

Tuliptulip · 17/08/2020 17:45

I don’t have any experience of this but didn’t want your post to go unanswered. Google is rarely a good idea, though too late for that no obviously. I’d focus on chasing up a speedy neurology appointment which will hopefully put your mind at rest. I imagine you’ve had no other symptoms which has to be a good sign.

Tuliptulip · 17/08/2020 17:46

Cross post @toomuchlikemyusername - happy to join you in the hand holding though...

BohemianDream · 17/08/2020 17:48

Hey OP. I couldn't read and run, I have no valuable information I can give you but I wanted to to say that you have to relax. It is likely that if you have anything going on then it will be treatable. It may be nothing. It may be something. But you will be okay. Googling things can be such an unnecessary burden of all sorts of information. I hope all is okay.
Try your best to get on with things as usual, and deal with things step by step. Flowers

Holothane · 17/08/2020 17:49

I’ll handhold too, worry can be crippling, take it one day at a time and yes I’ve had two detached retinas, two replacements for lens and aVictriopomy as well, excuse spelling. So I know all about worry.💐💐💐💐💐💐💐💐💐💐

WankmasterBastardDeLaShithead · 17/08/2020 17:54

What a shock for you for something to be flagged up out of the blue like that. Googling health stuff is a truly terrible idea (I speak as someone who has regularly scared the living daylights out of herself by doing it). Even with something as alarming sounding as this, there are bound to be a host of relatively unscary reasons for it. In the meantime, do you have some ways of distracting and/or soothing yourself? A funny movie, a cosy bath and a radio play, crafting...

ChangedNameToday · 17/08/2020 17:54

A colleague had this - he had no symptoms at all but was deemed an emergency case.

He responded well to medication to reduce the pressure build up and was back at work within days.

ChangedNameToday · 17/08/2020 18:11

Sorry. I mean no symptoms he was aware of but the optician obviously spotted them.

user1469525654 · 17/08/2020 18:15

Hi this happened to me and I too googled it and wound myself up with thoughts of pressure in the brain. I had tests checked by two consultants and it turned out that I had halo shapes on the margins of my optical nerves which I was born with. Apparently the halo on the nerves can indicate pressure and intracranial hypertension in some people but in others it is completely benign

acocadochocolate · 17/08/2020 18:25

Being sent to a neurologist is obviously concerning. You'll be in good hands and get the treatment you need.

Original poster
Singlemum31 · 17/08/2020 19:17

Thank you all for the replies I've calmed down abit now. Ive missed the phone call from hospital, tried ringing back but was just an answer phone saying they will ring again. The fact they have rang me within 3hours of my appointment is scarying me. It could be a good thing but surely they don't ring that quick unless it's bad.....
I just can't get my head round it only went to check my eyes and then this. I have had awful headaches since before Xmas they come and go tho, haven't had one for at least 6weeks. But when I get one I can't move with out being sick and my head fills like it's going to explode. I'm hoping it's nothing but there's just that worry I've never been ill let alone having to see nergeioyly team.

OP posts:
catchingzzzeds · 17/08/2020 23:29

I hope you don't have to wait long for the call back. Try not to worry, there's just no point in worrying yourself

TenShortStories · 17/08/2020 23:37

Some of the teams dealing with emergency referrals have found their workload reduced during covid because people have stopped doing things like going to the optician or the GP. So maybe calling you quickly is a sign of them being on top of their emergency list due to covid.

Even if not, you have fulfilled the criteria for being seen very quickly, but many of the people within that group will turn out to be fine. It's an intentionally wide net to make sure it does catch the serious cases, but doesn't mean that you are one. Hope you hear back soon.

Original poster
Singlemum31 · 18/08/2020 00:02

Why can't I stop goggling 😒I'm going from ill be fine take it has it comes to looking at brain tumors ffs. Just can't stop myself. Hoping they call again tomorrow I missed it by seconds 😭

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Broomfondle · 18/08/2020 00:23

What a shock for you. I hope you've come across idiopathic intracranial hypertension through your googling, as it's a much less worrying cause. It's still too many steps ahead though, wait for your hospital assessment and take it from there.

AllTheWhoresOfMalta · 18/08/2020 00:27

Hi OP. I’m sorry you’re going through this. My Mum had something similar- she was referred urgently and there was talk of glaucoma after the initial tests ..... turned out to just be a weird genetic thing (my Grandad also had it) and nothing to worry about. Touch wood, she’s fine. Me and my siblings always have extra pressure testing etc at the opticians now. Chances are that yours is similarly not serious, but I understand the worry. Keeping everything crossed for you.

imissthesouth · 18/08/2020 00:30

Hopefully it's nothing and tests will confirm this. Definitely never google anything medical it's a disaster for anxiety😅Try to do things that distract you, eg playing with the kids, going out with friends etc

Original poster
Singlemum31 · 18/08/2020 13:13

I'm off out with a friend today so hopefully will take my mind of it.
The hospital called me back this morning and I'm being seen on Thursday so least I don't have to wait weeks,
Does anyone know if they will tell me there and then if anything is wrong or will it be a case of waiting for tests etc to come back?

OP posts:
imissthesouth · 18/08/2020 13:39

i'm not medical expert but i'd assume they'll have to wait for tests unless they're in no doubt about it. Wishing you all the bestThanks

Borntobeamum · 18/08/2020 14:58

This happened to my daughter. She had inter cranial hypertension. Basically too much fluid around her brain. This was picked up at an eye test.
She was referred and seen within 72 hours and admitted to hospital for a lumbar puncture. This reduced the pressure in her head, however she had a reaction to the LP and was very ill because of that.
Her intercranial hypertension came back about 3 years later and again she was admitted for a LP. Again this made her extremely ill.
They did a ‘blood patch’ which helped a little and she was home after 4 days.
She’s not had any reoccurrence since then.
I’m not saying this is what you have but whatever it is has been picked up and will be dealt with. Good luck x

Original poster
Singlemum31 · 18/08/2020 21:16

Borntobeamum sorry this happened to your daughter hope she's OK now. Did she have any symptoms before her eye test?
They said yesterday looks like papilledema and hypertension is one of the causes I think? the rest are abit bleak 😑

OP posts:
pasteldechocolateconchispa · 18/08/2020 21:31

I had IIh, mine was discovered because of the absolute bastard migraines I had and the constant runny nose, Enoch turned out to be the extra fluid leaking.

My migraines were awful, 6/7 days at a time 3 times a month. My eye exams showed swelling etc around my eyes. I had a lumbar puncture and The fluid removed, I have the most lovely consultant who before my lumbar puncture said loose weight or go blind, he scared the shit out of me. I changed my life instantly I pretty much ignored doctors advice up until that point. I had papilledema, he put me topirimate and sumitriptan when I need it. I lost 6 and half stone and still going, I’m his best patient, I’m now in remission, I now longer have IIH, I have reversed the effects it was having on me, once I got just under 12 and half stone I stopped getting headaches, my eyes have returned to normal, I have a slight scarring on my left eye from when the swelling was bad however does not effect my vision, I have regular eye tests at the hospital, I have drusen which is something you can have in your eyes which present on eye tests. I no longer have a build up of pressure.

IIH translates as benign brain tumour or something, it has symptoms of a tumour but no tumour is there.

My tablets make my brain a bit hazy so hope this makes sense

Original poster
Singlemum31 · 20/08/2020 14:36

Well I'm at the hospital wish me luck 🤞

OP posts:
Amber0685 · 20/08/2020 14:40

Best of luck OP. Do let us know how you got on.