Papilledema

[BokehBabe]

If you have/have had this - how was it diagnosed, what were your symptoms and treatment?

Headaches, feeling of pressure behind the eyes. Went to the doctor who looked in my eyes and could see the swelling on or by the optic nerve / disc. Sent me with a letter to A and E. Treatment included diaretics and lumbar punctures. I also had to come off the contraceptive pill. This was circa twenty years ago so things may have changed now.

Thank-you for replying.

I have no symptoms except tinitus - awaiting mri scan which I need to book in.

I went specsavers for a regular test and was sent to a-e has I had pressure behind my eyes, I felt fine in myself. I had the odd really really bad headache but was months apart. I've had mri Ct scan all the tests etc, my blood pressure was 250/110. I'm still doing tests now to find out why it's so high etc. Got another mri soon too.

Good luck Jojo

Its taken me since September to get hospital nhs appointment

It's the waiting that has played on my mind - will book my mri scan as soon as I get the go ahead from my insurance.

Anyone else with similar experience?

I had it about 5 years ago. I'd been to GP umpteen times, seen a neurologist who did an MRI and both told me there was nothing wrong. By chance went for an eye test shortly after, where camera showed swollen optical discs and within 24 hours was in A and E having a lumbar puncture. I had a feeling of pressure in my face, like someone had blown it up with a balloon pump. I'd also had vertigo, dizziness but no headaches weirdly.

Hey all, sorry to jump on, bit did anyone have intense scalp/facial tingling as a symptom?

I don't think so Myname. The medication they gave me for it gave me weird buzzing and tingling, Diamox.

Thanks @Cipot (I only ask as I have symptoms of pressure behind eyes, headaches, tinitus, but plus tingling - I'm awaiting an MRI and always keen to hear of options of anything other than brain tumors, though I know brain tumors are rare, it's easy to jump to worst case scenario).

If you go for an eye test and they see paps, they used to send you straight for a CT scan and lumbar puncture. Not sure if it's still the protocol, but it can be much quicker.

If you are over 30 and overweight, intracranial hypertension is more likely i think.

Paps is as a result of something amusing pressure around your brain. If they see this they send you straight to Eye casualty or to the hospital for scans to rule out anything sinister.

Are you in the UK?

That's interesting @Cipot! I am in my 40's and newly overweight (was healthy weight prior to lockdown 1), but I only maintain a healthy weight with serious effort and exercise (my body wants to be a size 16/85kg - I have to coerce it into being a size 12/70kg with calorie control and Spinning).

The GP looked in my eyes to check for optic nerve pressure and saw nothing, which I would find slightly more reassuring if it were an optician (they know eyes like nobody's business).

Just going to google if intercranial hypertension is related to standard blood pressure (my BP is pretty normal/low side of normal).

Thank you!

Papliadima is a true medical emergency as you can lose your vision. An optician will pick it up straight away (can also do a check on eye pressure to confirm increased pressure) and will call the neurology department in the local hospital and they will be expecting you! Often blurred vision is the first symptom often just in one eye. Headache is not always present.

If in doubt go and see an optician asap. From what you have said it doesn't sound like Papliadima.

No, it's not related to blood pressure. It's spinal fluid pressure.

@Crewtshirt - unless it is spotted during a pandemic and you don't have any side effects - in which case they make an urgent referral that takes 7 months waiting time!

I'd go back to the opticians and see if it's worsened. They can refer to eye casualty. Even without symptoms this could be indicative of something going on that may need to be looked at urgently.
If it is "just" pressure causing the paps then your sight is at risk too.
Please go back to the opticians, they can send you straight to eye casualty.

Looking for updates please. I've had my mri and have an appt this week to discuss. Worried beyond belief - still get awful ringing in my ears but no other apparent symptoms.

I doubt If there was something obvious or urgent they wouldn’t wait for an appointment. Radiographers would flag images urgently for attention.

My opthalmic consultant has now referred me to neurology on the back of my mri scan. More waiting and more worrying.

Hi @bokehbabe what was the outcome? I’m awaiting CT scan test results. Hope everything is ok.

Hi guys, @Tayegete how did your results go? I went for an eye test yesterday because I’ve been having pressure in ears and vision problems. Found to have swollen optic discs and referred to hospital urgently - but hospital have said it could be a week or two before I’m seen! I’m not happy to be honest as everything seems to suggest it’s urgent, and I’m extremely worried and anxious.

Hello just coming on to share our papillodema or papillodaema experience (spelling it both ways for future people) as others on mumsnet may learn from our experience.

Our optician saw it in my son on 20th April and sent him to the emergency eye clinic where the consultant ophthalmologist thought it was "just" post-virus optic neuritis. Main symptom was blurry vision. His headaches were actually getting better he said.

A week later he reported double vision and attended the emergency eye clinic his uni town. They only had the optician's records (thankfully) and referred him for urgent MRI.

He had the MRI on the 4th where they immediately saw that he had banged his head (probably when drunk as he didn't remember doing so) and had a collection of blood under his skull, outside the brain but squashing his brain and eyes. They drained the blood on the evening of the 6th May. Apparently the procedure is so straightforward it's the first operation they teach a trainee. He should make a full recovery but:

1. This was a life-threatening emergency
2. This was a sight-threatening emergency (and we still don't know if his vision will be 20/20 again though it is recovering well)
3. Looking back I now realise we downplayed the headaches/dizziness he had reported as it seemed so vague but also because subconsciously we were scared of a brain tumour diagnosis.
4. even if it had been a brain tumour it could have been a non-cancerous one that was operable and therefore STILL a medical emergency
5. not all head injuries are bad - or even memorable if you live a normal student life.
6. Your optician is almost certainly right but has no authority to override doctors.
7. medical friends are not experts in this area (GPs, etc).

I am obviously pretty shaken up by all this and want others to get their child to the right doctor (neurologist) if optician suggests it. If roadblocked, consider alternative optician who is near a centre of excellence for neurology that has a different protocol - suspect mumsnet opticians could help with this.

Crewshirt has we had this as you describe

“ is a true medical emergency as you can lose your vision. An optician will pick it up straight away (can also do a check on eye pressure to confirm increased pressure) and will call the neurology department in the local hospital and they will be expecting you! Often blurred vision is the first symptom often just in one eye. Headache is not always present.”