Anyone had ocular migraines lasting longer than an hour?

[headbored]

Ds has been in hospital after having sudden tunnel vision, I get migraine with aura but that affects both eyes so we wanted to get him checked. Had loads of tests everything came back clear, blood's, ophthalmology, brain mri.

It fits the description of ocular migraine (we have now been discharged ) but I can not find anything About anyone ever having an ocular migraine (vision disturbance in one eye) that lasted more than a very short time.

Ds lasted about 12 hours until normal vision was back

To add he wasn't dx with anything they just said it sounds like some kind of migraine especially with it running in the family. They were happy to rule out stroke/tumour/clot etc
I'd just like to know if anyone else has experienced similar

Yes, mine can last a good few hours, longest was around a full day. They average 4-6 hours. I don't get them as often now I'm older but had one Easter Day that lasted around 3 hours until I finally gave up & went to bed.

Does he have any idea what triggered it?

Yes, absolutely. I have umpteen migraine types, and visual effects (blindness usually in my right eye or tunnel vision in one or both eyes like I'm wearing horse blinkers) plus a pile of other symptoms can last literally days. I lost the sight in my right eye for 5 days once.

Frightening, but benign.

Yes, I get it usually in my right eye. Either 'blind' in it, fuzzy or feeling like I'm looking down a narrow tunnel. Can last a few hours.

Wow thank you this is so comforting to read (although horrible for you)

I understand how horrible it is to lose vision as I get them but mine are typical in how they present.

He's only 9 so it was a huge worrying few days. He was playing minecraft at the time 🙄

Consultant advised him to cut down his screen time a bit as that can cause migraine, much to his disgust! 🤣

He also suffers tummy pains which the dr and I have considered could be abdominal migraine so he's obviously prone to it

I had what was diagnosed as Status Migranosis for the first time when I was in my twenties after starting the Pill.I basically had one migrane attack after the other for a full 10 days .All investigations were done MRI, EEG etc and nothing was found .Of course I was very very ill with all the usual symptoms , blindness , flashing lights vomiting and excruitiating headache and ear pain and barely able to stand up .It resolved itself without any consequences until I had it again in my first pregnancy . Since then which is over 20 years I only get Occular Migrane occasionally without the pounding headache .
Status Migranosis is any migrane lasting longer than 72 hours .

Thanks for that.
My migraines I have aura (both eyes) for around 1-2 hours and the headache and nausea usually hits about 45 minutes in and then lasts a good few hours, feel poorly for the rest of the day or so

Ds vision just went to tunnel vision, stated that way for around 10 hours then gradually improved for about 3-4 hours until it was completely back to normal

No other symptom, no headache, nausea etc it was so strange

My DS also gets Ocular Migrane since he was in his teens.The poor things ,it is so hard to see them suffer when we know ourselves how debilitating it is .I remember the first time I got migrane .I was about 14 years old and watching horse racing on the television but nobody took any notice of me .I was terrified . We can do our best to support them and take away that fear.Medication is much improved and there are Doctors who specialise in treating recurrent migrane so if it persists it may be a least some support to seek them out.

I didn't realise they could last that long. I have aural migraines with zigzag lines going across my vision, missing letters if I'm reading but they never last more than about 25 minutes.

Must be frightening if they last for hours or days.

Yes, mine last hours anyway, some don't go until i go to sleep. They are usually caused by overtiredness over several days and trying to power through.

When they start I avoid books, phones, tablets, computer and watch TV - its a bigger screen, but its mainly because its further away so the eyes can " relax" more, its less intense.

If that doesn't work then no screen anything. Go do chores, walk, actually talk to others (much to kids dismay 😅) and if that fails its go to bed in a darkened room and/or sleep.

I have found that its all about resting and relaxing the eye muscles . And getting it early enough stops hav8ng to do the progression to sleep.

Thank you. Does your ds vision disturbance last less or more than an hour? They sound common in general but it's heard trying to find any anecdotes of people having specifically ocular migraines that last more than an hour

@BernardsarenotalwaysSaints is it your vision disturbance that lasts hours? And Is it only in one eye?

He seems fine in himself now

Ok so we are a week after the episode and this morning at school it happened again but not as bad and not for as long. Spoke to gp who said just to monitor for now as he's had lots of tests
He said it has gone a bit blurry again this evening

I'm trying not to worry as all the scans were clear, and eye tests fine. But I just can't find anywhere else online, everywhere says ocular migraines last 5-20 minutes sometimes Up to an hour

I once had one that lasted several days. It was like I had vaseline smeared in one eye. Only a mild headache though.

Thanks for your reply. Have you had them more than once? And it was just one eye?

OP all this googling online doesn't sound helpful, it will never answer your question, only make you have more.

He's been fully assessed, which means he's fine, but if you're genuinely not reassured could you afford to see a private ophthalmologist for a second opinion? Just to lay it to bed so you can focus on reassuring your son and avoiding triggers/relieving symptoms?

(It will do your son no good to see you panicking and second guessing. He needs you to reassure him and act confident even if you are not. If you need a second opinion to get that then I think it's worth it).

Thank you, I know you're right. I can't afford to see an ophthalmologist privately, though my gp did say he would refer him again if they carry on.

I don't let my son see the worry, it's just me in my brain, I tell my son it's all good now the tests have been done. I just need to try to believe that myself! It's just hard because they didn't really know either at the hospital, couldn't only say what it wasn't rather than what it was

His eyes still blurred today so got a phone consult on Thursday to refer him, not sure where to, ophthalmology again I assume, although he did have a thorough ophthalmology exam last week which was fine

If it's a migraine, nothing will show up on examinations, in which case ask to see a neurologist with a specialism in headache and migraine.

Thank you yes I will do. I worry in case there's something in his brain and it didn't show up on the mri but I know that's my anxiety talking so I'm trying to not think like that. So hard when it's your child.

It fits the description of ocular/retinal migraine perfectly except for the amount of time it lasts

Take the amount of time you're told it "should" last with a pinch of salt. The timeline for a migraine is so individual, and the classic descriptors are usually nonsense.

I have had migraines last for weeks - the expectation by doctors is that it should last no more than a few hours or days. Honestly, the science of migraine is so poor and so badly described.

Thank you :) I do suffer from classic migraine so I know that the aura and other effects can last hours. I had just never heard of ocular migraines before and everywhere says they last between 5-20 minutes.

But even just from this thread it's apparent that people gave them lasting longer

Hi, yes I do get migraines now and again, only rarely with eye disturbance and then its usually a sparkly thing that lasts about 20 mins. My son started getting migraines too when he was about 10, his sometimes cause him to vomit. He's 27 now and his are triggered by not eating.