Ocular and visual migraine, retinal migraine

Does anyone else here suffer from ocular or visual migraines during PEM?

I have them with aura sometimes too. No headaches though.

Have you gotten to try any treatments, and if so did they help?

Are there any existing threads on this? I couldn't find any but maybe I'm using the wrong name for this symptom?

 

Yes and I found that my regular B12 injections have reduced this (which had gotten to the point I couldn't look at a screen for 10mins)

 

I had one once. It was terrifying and I had some degree of visual disturbance that lingered for days, and resulted in an ER visit. It never happened again and I won't be that worried if it does, since I know the cause.

 

Yes, but as I've had them since I was a kid, I doubt mine are directly connected to ME. In the UK they're usually called retinal migraines, as it seems to be the retina that goes screwy.

One of the things that reliably triggers mine is bright sunlight early in the summer, before I've acclimatised to it. However, waking up in the morning will also do it, as will hay fever, and absolutely-no-reason-at-all. (Maybe it is PEM, I hadn't really thought about it?)

I just sit them out—they're a slight annoyance, but I'm used to them. I only found out there was a name for them about 12 or 15 years ago, when I had to ask an optometrist if she'd see her next client before me because one of my eyes had gone on strike again.

 

I've gotten several migraine auras over the past two years since having the Pfizer covid vaccine. I don't think they are related to ME though. I just get the visual symptoms - never any headache.

 

I have had this a couple of times thanks to the addition of Long Covid to my ME.

It is truly terrifying as my vision gradual turned into a flickering honeycomb pattern, even when I closed my eyes.

It lasted about 20mins each time and has happened when looking at my laptop. I think previous posters might be right about it being PEM related.

I Google'd 'kaleidoscope vision' and discovered the term 'occular migraine' and stopped panicking that I was losing my vision or it was a detached retina.

I mentioned it at my online LC clinic intake appointment and was told I knew more about it than she did. Always reassuring to hear from a specialist clinic....

It seems to be another 'cyclical' symptom for me as I had about 3 or 4 and then my body moved on to something else really weird, which seems to be the way with LC.

I also have louder tinnitus since getting LC and I read somewhere that the two are related.

 

I can't distinguish between PEM/non PEM occurence. I get the full gammut of vision impacts as part of paralyzing migraines which started only after ME/CFS had kicked in some years previously. In my case the migraine cause is usually identifiable some can be dietry (dairy) but the usual precursor is an allergy response, for dust and especially mould - I now mask up for cleaning or doing anything in the garden, which does have some impact on reducing frequency.

As far as treatments, taking a vasoconstrictor (OTC decongestants) as soon as the aura/pixelation/tunnel vision starts, reduces the duration of the visual problems as well as the duration of the migraine as whole. A couple of years ago I was prescribed a calcium channel blocker (ccb) for age related familial high blood pressure - this had the concidental effect of reducing migraine frequency which at the time up to 80+ a year. For anyone with high migraine frequency ccb might be worth considering if other options are not available.

As a general point I think migraine comorbity with ME/CFS is 'interesting'.