Ocular and visual migraine, retinal migraine

mango

mango

Senior Member (Voting Rights)
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, 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 occasionally get lateralised visual disturbances, usually accompanied by a mild lateralised headache, that have been diagnosed by a neurologist as a form of migraine (I though I was having micro-strokes, or some low level form of brain hypoxia). Been happening for decades.

It is usually not of much practical significance, besides avoiding reading or driving with the worse ones, just for visual reasons. The longest has been about two hours, with most being much shorter than that, sometimes just a few minutes.

The neurologist did say that mild, short duration migraines are much more common than is generally understood, even by doctors, and most people probably experience them occasionally. No idea how correct that is.

The visual stuff can be very colourful and dynamic. Hundreds of tiny sparkly dancing rainbows. Can fill up half my field of vision.

I have known people who get very strong migraines and they are in bed in a dark quiet room on strong painkillers for a day or two. So I can't complain about my very mild form.
 
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'.
 
Recently, I was reading in the bathtub, and shimmering white diamonds slowly moved across my visual field. It lasted about 15 minutes, and I had no headache or any other symptoms, during or after.

My eye doctor ruled out any kind of visual problem that could have caused it and told me that although it could have been a silent migraine (migraine without headache), it was unlikely that I'd get a 1st-time migraine at age 68. She said I needed to rule out vascular or neurological causes.

Next week I'll get checked out by a cardiologist and go from there. I'm hoping that it was caused by a silent migraine. I have 2 friends who have have these occasionally and lead normal lives. One is triggered by bright lights, so she wears blue-light reducing glasses.

I have fibro, not ME, so PEM couldn't have been a cause. I've had covid twice since 2020, but haven't experienced any long covid symptoms. I had been especially fatigued in the weeks before I had the visual disturbance, and my neck muscles are always tight. I read that both these things can bring on a silent migraine, but I'll have to see what these specialists say. There's a childish part of me that wishes I had just kept my big mouth shut at the eye appointment.
 
perchance dreamer said:
Recently, I was reading in the bathtub, and shimmering white diamonds slowly moved across my visual field. It lasted about 15 minutes, and I had no headache or any other symptoms, during or after.

My eye doctor ruled out any kind of visual problem that could have caused it and told me that although it could have been a silent migraine (migraine without headache), it was unlikely that I'd get a 1st-time migraine at age 68. She said I needed to rule out vascular or neurological causes.

Next week I'll get checked out by a cardiologist and go from there. I'm hoping that it was caused by a silent migraine. I have 2 friends who have have these occasionally and lead normal lives. One is triggered by bright lights, so she wears blue-light reducing glasses.

I have fibro, not ME, so PEM couldn't have been a cause. I've had covid twice since 2020, but haven't experienced any long covid symptoms. I had been especially fatigued in the weeks before I had the visual disturbance, and my neck muscles are always tight. I read that both these things can bring on a silent migraine, but I'll have to see what these specialists say. There's a childish part of me that wishes I had just kept my big mouth shut at the eye appointment.
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It sounds like scintillating scotoma, which commonly lasts 15 minutes. I've had it several times, although the last time it lasted one and a half days! I think that time was coronavirus-triggered.

I've described scintillating scotoma several times here and on Phoenix Rising. Here is one link:

MeSci

Post in thread 'Study finds potential causality between blood clot factors and migraine with aura'

I wonder how scintillating scotoma, which is a migraine-like aura I get for about 15 minutes once a month or less, usually without headache, fits in?
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Did you check whether you could speak properly? I usually lost the ability to make sense when speaking or writing, until the visual effects stopped. It was most frustrating, as there was no way to record what was happening!

I haven't had it for several years. I wonder whether it was due to high blood pressure, or polyuria, both of which stopped last year, and I was able to stop the medication for them.
 
I get migraines, sometimes with the visual effects before the headache and sometimes one or the other. The first time I had the visual effect I was only 15 and terrified I was going blind. My mother just said, oh, yes, that's a migraine aura.

@perchance dreamer, it's good you are getting your visual experience checked out by your doctors. I hope it turns out to be nothing serious.
 
MeSci said:
Did you check whether you could speak properly? I usually lost the ability to make sense when speaking or writing, until the visual effects stopped. It was most frustrating, as there was no way to record what was happening!

I haven't had it for several years. I wonder whether it was due to high blood pressure, or polyuria, both of which stopped last year, and I was able to stop the medication for them.
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Interesting - for me, migraines of this type usually proceed in more or less discreet stages, beginning with an intense pressure and pulsing in my head and ears (not really pulsatile tinnitus, but the volume of all sound increases and decreases with my heart beat), then the visual effects (first negative - an area of my vision just disappears - and then positive - the scintillating scotoma), which usually last 30-40 minutes. After that, if it's a bad spell, the aphasia will kick in, and might last 20-60 minutes. If I'm really unlucky, the entire process starts over again within minutes of the aphasia fading.

I had a few episodes of this in grad school, but it did not become a regular occurrence until around a decade later, coinciding with the onset of what I now recognize as the start of my serious ME/CFS deterioration.

I never thought to connect it to polyuria, though I've suffered from that for decades.

Both my mother and my maternal uncle have the scintillating scotoma, but no aphasia (and no ME/CFS).

I've had some success with CRGP inhibitors, though they're certainly not perfect.

Oddly, after the initial rapid decline, I have had fewer migraines as my overall conditioned has worsened. This might be connected to disease progression, or might be connected to lack of activity or postural changes.
 
MeSci said:
It sounds like scintillating scotoma
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Yes, it doesn't really sound like retinal migraine. That's most commonly in one eye only, whereas classical migraine auras seem to involve both.

I feel lucky in that I've never had any sort of migraine other than retinal, and while some folk get pain and other symptoms with it, I've only ever had vision loss. My GP insisted it always happens in the same eye, but it affects both of mine; it seems to stay on one side for a period of time, then switch to the other.
 
MeSci said:
Did you check whether you could speak properly? I usually lost the ability to make sense when speaking or writing, until the visual effects stopped. It was most frustrating, as there was no way to record what was happening!
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I was alone when the white diamonds appeared in my vision. I don't remember this specifically, but I'm certain I would have cussed out loud while it was happening, so would have noticed any speech difficulty. My husband got home about an hour after this incident, and I talked to him with no problem. Thanks for the link you provided.
 
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