Visual Aura
Posted , 9 users are following.
I experienced something today that was so frightening, I had for the first time ever a visual aura, it was awful like a half moon zig zag with a bright light around it, I had no headache but I was really scared, it effected both eyes, but my left eye mostly, it didn't go when I shut my eyes and it lasted only for about 20 mins that seemed for ever, I started feeling sick, then it slowly went away, I read up on it and I think I experienced a visual migraine. I know that some of you have experienced these, I think you gave Kieth, can anyone tell me if it is a symptom of polycythemia, or was it just one of those things, I know you can read into everything been poly, I really don't want to experience that again! Please any advice would be appreciated x
1 like, 19 replies
richard96620 julia15874
Posted
I am a new PV patient.
I have similar eye issues about 2 months a go, at that time, I was attending a lecture, I am not able to read things written on the white board.
My Oncologist prescribed Hydrea for me, and I am taking baby Aspirin to thin my blood. I do exercise on my eye, rolling the eye 36 time clockwise and 36 time anti clock wise. I do this once or twice a day. every individual is different, It works for me.
Since then, I do not experienced this eye problem again.
Richard Law , Houston Texas
julia15874 richard96620
Posted
Thank you Richard, I've developed a bit of a headache since I had the aura, very strange, never experienced anything like it, but I'm fine and relieved to know it's not sounding serious. X
Zapamania julia15874
Posted
Hi Julia since being dx with Pv I have experienced about 4 of these visual auras. Yea it's very scary. Mine is only in one eye and it's a zigzag succession of them streaming across my eye. They are yellow almost neon. From what I've read they're called light flash mingraines with or without headache. Of the 4 I had one headache afterwards. I have to believe it's the Pv cause I never had anything like this before Pv. They can last from 20 min to an hour. Bring it up with your dr at your next visit. I am next week.
julia15874 Zapamania
Posted
I will do thank you, like you it came on suddenly, I was a little scared tbh, but reading about them afterwards it says they are not serious but that's perhaps in people with a normal flow of blood, I feel embarrassed that I'm constantly getting one symptom after another and it's something else to tell the GP about, I just want to get on with things but I've no proper diagnosis yet. I'm having another blood test Friday so we will see what those levels show. Thank you it's good to know your not alone with these strange symptoms. X
Zapamania julia15874
Posted
Hi Julia I was so scared I thought I was having a stroke. And you're right it doesn't go away by closing your eyes. I have noticed one thing it seems to happen at least to me in a dark room with light on like the tv or computer. So now I watch tv with sunglasses on. Nuts!, or I leave a lamp on. Don't be embarrassed about your symptoms they are real.
keith28441 julia15874
Posted
That’s exactly what I experienced for a number of years. Sometimes it would last a few hours with a pounding headache following the aura other times, it would last 20 minutes or so without no headache. In the early years, I would get a spate of migraines at least once a week for a one or two month period but then I could go one, sometimes two months with none. It did however get progressively worse as the months went by and just prior to me being diagnosed with PRV, I was having them so frequently and sometimes I would get the aura twice a day. I was treated by my GP for at least 5 years with migraine medication but it had no effect. My Haematologist confirmed to me that it was almost certainly to do with the Polycythaemia hence why he thought I had the start of PRV back as far as 2010. Shortly after my diagnosis and when I underwent my initial treatment of venesection, the migraines with aura actually got worse but then after a month or so they started to improve. I have not had a migraine now since the 28th May. I can absolutely empathise with you on this, the zig zag and bright lights that starts in the middle of the eye and eventually moves to your peripheral vision and vice versa. Sometimes it affects both eyes, sometimes just the one (usually with me the left eye). It’s scary when it first happens but please tell your Haematologist of this experience as although I am no Doctor, I think there’s a very good chance it’s to do with your Polycythaemia and he/she needs to check the viscosity of your blood, which I believe may be the cause of you having this migraine.
Hang in there, I know it’s hard but take comfort in that I can now refer to you as my “Migraine Twin”. You are not alone on this.
With very best wishes.
Keith
Zapamania keith28441
Posted
Hi Keith thanks for your reply to Julia. Here we are 3 people with Pv with this symptom, so it truly validates to me that it is Pv related. I also believe that's it's related to our blood viscosity. Thank you for sharing. Zap
julia15874 keith28441
Posted
Thank you Keith, I've a slight headache since it happened but nothing that needs a paracetamol for. I was sat there just after I'd had lunch with my husband and it came on so suddenly, I was like saying to him, I can hardly see, this cone shape that's bright and zig zag, wouldn't go at all, it made no difference if I were to shut my eyes, there was no escape, I was so scared, it then slowly went, I was thinking not something else surly. I am thinking something is progressing, I'm trying so hard to get on with things and I'm getting so embarrassed to keep telling the GP, even though I'm lucky they are so helpful at my surgery, but I will tell them about this it's too scary to ignore. Once again Kieth im so grateful for your help and I hope your doing okay, I hope your platelets are going down so you can travel. All my best jxx
julia15874 Zapamania
Posted
Thank you Zapamania, it's so helpful to know that we can all support each other. X
debwes julia15874
Posted
I have experienced that many times before I was diagnosed with PV. It scared me the first time too. It generally happens at the most inconvenient times, like
when I'm driving. If I can I usually lie down until it goes away, usually 20 minutes or so. I just attributed to my ocular rosecea. I asked the opthamologist at my last appointment and he wasn't too concerned about it. Not sure if this is associated with PV but will ask at my next eye appointment and let everyone know.
Deb
angela_o..o julia15874
Posted
I don't know if what I have experienced is quite rhe same thing but it is certainly very similar. The first time it happened to me Iwas walking in the countryside and it looked like The centre of my vision was blurred as if by Vaseline or something. No headache. Like you, it faded away after about twenty minutes.
I Googled it and found "ocular migraine" which summed it up for me. If you look for images of ocular migraine you might see what you have experienced too. Apparently, it is harmless.
It happened again a few weeks later, exactly as before, and again after a few months.
Then my other half had it a few times but he hasn't said anything about it lately.
I haven't had one since I began to have the venesections.
Zapamania angela_o..o
Posted
Hi Angela I got a brochure from my opthomologist and it's called light flash mingraine with or without headache. Zap
Orseblue julia15874
Posted
I got that for the first time about 10 years ago, got scared and my doctor said it was migraine. Same with me had no headache.
It happens to me on and off. I was dignosed with pv nearly 2 years ago, it have sometimes come on when I'm extremely stressed or nervous about something.
Other times it just comes on for nothing.
Zapamania Orseblue
Posted
Hi Orseblue thanks for adding to this discussion. I now am convinced it's from the Pv. There are too many of us for this to be coincidental. Is there any type of med that you have been given for this? Zap
julia15874
Posted
Thank you all for your experience on the visual aura, I'm so surprised that so many if you have experienced this strange migraine. I'm hoping I don't get another but won't be as worried if I do next time. All the very best PV friends xx
debwes julia15874
Posted
Ok. I haven't had one of the light flash migraines in quite awhile and just had one a few minutes ago...go figure. At least I wasn't driving this time so that's a plus. Mine typically originate outside when the sun is bright. Anyone else?
Deb
Zapamania debwes
Posted
Hi deb ironic that you had one a few minutes ago isn't it? Mine originate being in a dark room with the tv or computer on. So now I wear sunglasses when I watch tv or go to the movies. So somehow it has something to do with brightness filtlring into our eyes as a trigger.