Is the paplidema ?( optic nerve swelling )

[Lkakpk]

So I’m looking for opinions /insight .
im 33 normal weight and have been under neurology years for chronic migraine . I have spells that mean I’m debilitated for weeks /months at a time and they are truly awful as nothing helps until they eventually just go back to my quote normal daily headache .

Anyway for a few years I’ve wondered if I may have iih due to the severity of my condition and the fact I have whooshing in ears amongst other symptoms that match .
Mri completely normal and my suggestion has always been dismissed due to me not fitting the textbook picture ( ie overweight woman )

Anyway two years ago I was referred to ophthalmology for funny optic discs . I was seen and it was decided they were crowded and tilted but NOT paplidema .

This month I seen an eye doctor privately due to sudden onset double vision and worsening headaches . She too mentioned my discs and spoke to my neuro about it . My neuro isn’t concerned and she seems on the fence . So frustrating . Anyone got any insight or opinion on my pics ? I know this isn’t a diagnostic site but just curious why there seems to be such debate and in keen to get opinion ? I also don’t want to put myself through a lumbar puncture unless absoultley neccasary !

The only way to confirm iih is a lumbar puncture but people also have iih without pappilodema

all my scans have always come back clear.

you can ask for a second opinion.

Were you given a diagnosis/reason for the double vision ? Usually it is caused by a muscle weakness or nerve palsy ?

@KaySam i know I’ve been told it’s unlikely without paplidema and normal weight . I don’t like the idea of a lumbar puncture :( how did you get to diagnosis ?

@Holihobbies I was told a decompensation of a previous childhood squint and fact one eye is long sighted and other short exaggerated by tiredness and hormones post partum . No palsy . Normal mri

Sadly while it’s unusual it does happen. Recently neurologists aren’t keen to to diagnose iih without pappilodema but it does happen..it’s called iihwop

I was having blurred vision was told it was migraines,then went for an eye test. Resulting in clear scans and high lumbar puncture reading.

@KaySam thanks for reply . What made them do lumbar puncture ? Did you push for it or other concerns ? Are you on medication for it ?

I had the optic nerve swelling,along with severe headache. The ct scans were clear so lp was recommended. Pressure was high.
im no longer on medication now as I had to have a shunt fitted to reduce the pressure.

That's not papilloedema. The blood vessels look normal and the border between the optic disc and retina is clearly defined.

The optic discs look a little different to 'normal' but not oedematous.

I'm not saying you don't have IIHT , I can only comment on the photos you posted but I hope this helps

@princesspenny Thankyou for this ! My neuro said he would only really consider iih if I had paps he said without it’s highly unlikely and chronic migraine is something he’s adamant about . My eye doctor was a bit more open minded . I’m terms of the discs are the something that is unusual or quite common . My neuro shrugged it off and said nasal margin slightly blurred but I can see over it . Don’t know what that means but he seems confident . Although I want a definite diagnosis I don’t want to put myself through an uneccasary lumbar puncture as I know that in itself can cause a headache and at moment I’m crippled with them !

@KaySam because I seemingly have no severe swelling my neuro isn’t keen to progress further he said it would be so unlikely . I could push but worried could make my headaches worse with a lp