Ocular Migraines

[pezza]

Hi,
Does anyone else on here get Ocular Migraines (flashing lights with headache) and also get really bad photosensitivity?

If I look at a bright light I get really bad after image and certain patterns causes my eyes to see lots of flashes/distorted images.

Ive had ocular migraines for 4 years now but noticed the photosensitvity to be getting worse!

Any advice or people with similar symptoms would be greatly appreciated.

Many Thanks

[loonerj]

I don't know if mine are the same, but my migraines start off with distorted vision, where I can see a flashing, fuzzy blob and tends to blank out parts of things I look at. after 20 minutes it goes then I get a banging headache, I find I have to lie in a dark room for at least 4 hrs to feel better.

also I have constant tv snow vision, all the my eyesight is apparently better than 20/20 I see fuzzy dots all the time, it drives me mad!! I have had this checked at eye hospital and all is well but I can still see them. its worse in the dark!! I feel I am very aware of my vision and freak myself out a lot like when I am talking to someone I am very aware of the background and my periphial vision I almost feel I can't focus properly.

I hope this helps and I haven't waffled on too much.

[mollyfin]

Yes - just started last year. I had normal migraines throughout childhood and now I have ocular migraines that seem to be triggered by light in some way, not 100% sure on what in particular sets them off. They're equal parts scary and ANNOYING! I also have palinopsia, giant floaters, visual snow...but after seeing a million eye doctors, my peepers are fine. *shrug*

Anyway, I can usually cut a visual migraine off by being in pitch blackness for a few minutes. Even just sitting down and covering my face if I'm outside and can't turn out the lights. I don't usually get headaches with them; I just feel freaking exhausted afterwards.

[Kelley]

I get these too!!!! I just bloody had one yesterday, three weeks exactly after the last one! I've had it. I'm ready to just jump off this earth because of them!

Mine started in January last year. I was 33 years old. They have continued regularly ever since. I have never been a migraine sufferer so as you can imagine, they have really destroyed my life. I can't cope with drs saying they're harmless cause they don't feel safe at all! My eye distortion progresses over approx 40 mins and is then followed with a weird pain on the right side of my head and down my neck which can last anywhere from an hour or two to a few days! The one i had yesterday cleared a bit quicker then usual BUT two hours after the aura started, i had this god awful numbness, tingling, tightness go all through my left hand and up my wrist and then i started feeling tingling in the left side of my lip! I absolutely FREAKED OUT! I remember this happening this bad with my very first one last year which is why i called an ambulance, but i haven't had it this severe since!!! Anyone else get this????

I too have been told that my eyes are perfect. Honestly, i'd much rather they find something wrong with them so it can actually be investigated and perhaps cured. Instead, i am left with some uncommon scary mother of a disease that cant be cured or clearly diagnosed!!!! That noone around me understands because they don't get them! Although, my mum has had a few in the past which i discovered is where the gene came from but a few in 20 years compared to my 15 in just over 1 year!!!!

I also get left over images all the time, especially if ive been starring at something for a bit. And if i go outside and the sun hits the side of my eye, i am sometimes left with this weird coloured blob there for half hour or so!! Is that what you mean? I hate it, but everyone looks at me like im a weirdo when i describe it!

Anyways, thanks for your post. I really needed some reassurance right now.
How frequent are yours?

Kel x

[pezza]

I used to get them about once a week but now it is just once every couple of months. Had one last week and my eyes have felt strange since. When looking at my decking in my garden the lines tend to duplicate and phase off to the left, I have never noticed it before. I had my mum round earlier and she described the same thing which reassured me somewhat as she also has had visual migraines.

I also get a small black dot in my vision when I blink which tends to come and go. In a dark room at night if I blink or look to the right /left I see two flashing lights, circular repeatable every time and started in conjunction with my migraines.

Also when I first start running I see several lightening streaks in my field of vision but this tends to stop once I get going.

Suspect it is related to the migraines and stress but I tend to worry about PCA Dementia which is the same condition that Terry Prachet had although I am probably too young for this at 36 and all literature I have read suggest late 40's early 50's as the youngest which it tends to start.

I used to worry about MS and then it was Parkinsons .

Oh well that is health aniexty for you haha

[Kelley]

Does your mum get themas frequent as you do? How old were you when yours started Pezza?
If it makes you feel better, i also get those weird eye things your describing. Sometimes when i look at the road while im driving, it looks like its moving in waves! And if ive been on my iphone in bed at night, when i look up, i can't see things properly straight on....instead, i have to look away and i then i can see objects from my perephial vision only! Also, if i stare at the airconditioning grids and look away, then i can see the grids still wherever i look!!! If i look at a blank wall (usually a light coloured one), i can see this line that looks like its a line of light about 20cm wide that goes right across the wall!

Kel x

[pezza]

I must have been 30 maybe 31. 36 now and still alive so I am guessing they are not serious. My mum only had like 2 or 3 in her life although she is very relaxed about her health so is the sort of person that probably wouldnt notice. I get one small floater and start thinking I have a brain tumour haha

I am pretty sure it is related to the optic nerve being overly excited by all the adreliene being produced by our bodies. With HA I am certain we are constantely over producing adreneline which causes these symptoms.

Oh well I only just found this site but it is good to talk to likeminded people as it makes you realise that we are not the only ones:)

Perry x

[Kelley]

Your story sounds so much like mine Perry. I'm so glad i got to hear it. The thing with them that upsets me the most is that they just randomly started at 33 whereas most people i speak to on here have had them since adolescent age.
I am linking mine to over stimulation on the optic nerve through too much computer / iphone usage......can you relate to this?

Thanks for sharing. Feel free to PM me anytime if you need a chat :)

Kel x

[Dan51]

I've had visual snow for 30 plus years. Mild, but yet very noticable. Last year in february, I started testosterone therapy. Within 3 months after I started having more visual issues than ever before. Started seeing colors that would actually block my vision in spots for up to an hour. My visual snow also got really bad. So bad, I would panic on a daily basis. Finally I had no other choice but to go see a doctor. I never wanted to leave the house, thinking that a normal life as I "knew" it was not coming back. I saw numerous doctors. From neurosurgans to gastro specialists. Eye doctors, all seemed well according to them. I was getting weekly injection of testosterone. The therapist never followed up with a blood test for over 3 months. My blood had thickened, causing all types of issues. But my main concern was my vision. After 4 months of being off the testosterone treatments, my vision started getting better. Today, my vision has almost turned back to the way I was, but still a little worse than it was before treatments. Its really sad that science is so advanced but yet they cant find how to cure this. My quality of life had diminished considerably. I sit home when I'm not working. I don't go anywhere. I check regularly for any updates on cures for this. I would do anything to just be "normal" again. So if anyone here hears of anything that will help, please let me know. I need my life back. Thank you for listening.

[Speranza]

Kelly, is your condition related to your cycle? I think migraines can be tied in to hormones. 3 weeks just set my alarm bell ringing!