Ocular/Retinal Migraines For Years

Sep 9, 2014

I have never really suffered from headaches during my life until now (i'm 29). There is no family history of migraines.

Out of the blue, after a family function 2 years ago, we got home and I noticed the image out of my right eye was 'cloudy'. I wear glasses so immediately thought my glasses were dirty. I got a shock when taking them off to find it was my eye! I was a bit concerned, then 30mins later I had the worst headache in my life. I had to go to bed early. At some points even the sounds of the TV from downstairs were making me feel sick. It was as if every sound and sense in my body had been amplified. I think there might have been a tiny bit of twitching but can't confirm now as memory of it is a little hazy.

I woke up the next day feeling normal again, and put it down to hangover or just a 'bad headache'. I went back to my daily job (work in IT) and didn't think anything of it. The same thing happened again about a month later, this time not a headache as much, more visual symptoms. After 3-4 hours it passed and I was back to normal again. 

The frequency of them started changing from one every month, then around Jan 2013 one every two weeks, and since around June 2013 one every 7-10 days. 

At this moment in time I am off work due to depression/anxiety (Since Feb 2014) and currently can get them every 2-4 days. Last week I had four in the space of 7 days. 

What I experience now: The 'trigger' feeling that I know one is coming is slightly worrying; I can visibly see my pulse (vein shape) pulsing in my right eye's vision to my heartbeat. This goes on for about 15/30mins, then I start to get spots/lines/an 'arc' shape which will sometimes be there and sometimes now. I will also get moments of no vision in that eye 'black spots appearing over the central vision'.

When I read of people with 'ocular' migraines they note these symptoms usually leave after approx 1 hour followed by a blinding headache. My concern is the aura stays with me the entire course of the migraine - approx 6-9 hours. I believe I have 'retinal' migraines. Difference being I ONLY get the aura in my right eye. If I patch the right eye my vision is normal out of my left for the entire 9 hours. Also my head feels incredibly tight and sometimes will get a throbbing pain just above the tear duct on the right side of my noise. 

I have had my eyes checked and been told the pressure is fine (no risk of glaucoma). Also my blood pressure is normal/high (bearing in mind I do suffer with anxiety/depression).

I am at my wits end trying to work out what triggers them. I have spent months cutting out caffeine/alcohol. It made no difference. I have also tried limiting my use on computers/phones whilst I am off work. No difference. 

The only relief I have found is through exercise. I typically don't do any sort of intense daily exercise, maybe a 20min walk a day and household chores. 

2 Weeks ago, I decided to start an exercise regimen. Did jogging/walking for about 45mins-1hr each day. I went approx 10 days without a migraine (usually it's every 2-3 days at the moment). I am wondering what in the exercise is causing this relief? Could it be hormonal or just a stress reliever?

I don't smoke and don't drink much alcohol any more. I do have a bit of a weak neck - maybe this has something to do with it? My main concern above all else is it's not your typical aura, I only get it in one eye. 

I have also noted that I have never had a migraine before 1PM and after 10PM (apart from one rare occasion at 4AM when I was having a panic attack in bed). Something is happening between approx 2PM-10PM to trigger it, but I don't know what. 

I'm a bit of a hypochondriac at the moment, thinking it's a brain tumour or i'm at risk of stroke. I wanted to get a scan but GP said "if you would have had a brain tumour since 2012 you would know by now" and suggested meds.

Does anybody else here suffer from their 'retinal' migraines, or can offer any support or advice?

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A little history on me: I'm 21/F. I have generalized anxiety, panic disorder,  depression, PCOS, TMJ, and IBSD. These are all issues I have been dealing with. Medication list: Prozac (20 mg). Vitamin D (5,000 IU). Vitamin B12 injection (once a month). Iron (324 mg). Birth control. Ativan (.05 as needed).

My vision has changed since the beginning of this year. I now see small, clear halos when looking at bright, solid surfaces (such as the sky, walls, etc). I also see an odd wave, jelly-like substance when looking at similar surfaces. When I squint my eyes, I see a line of 20 small dots. All of the floaters I have mentioned move in an odd way, like they're falling. When I try to focus on them, my eyes make the floaters "jump" back to the top of my vision, only to begin falling again. These always look different (never the same spots or lines) and occur in both eyes. When I am focusing on something, such as the TV, I see random dots in my peripheral vision, but when I look in that direction there is nothing there. Went to the eye doctor, said everything looked fine, I am nearsighted, and any disturbances were ocular migraines. I have had three ocular migraines, where I can very clearly see rainbow lines in my vision. These occur when I have gotten very worked up/anxious and only last a few seconds. The floaters I have previously mentioned occur ALL the time. I can look at the sky at any time during daylight, and see them. Brought these issues up to my general practitioner and said this was nothing to worry about, but keep an eye on it. 

When looking down or look around quickly, I feel a visual dizziness and off-balance. 

PLEASE, if you have any information on what the possible causes of these disturbances/floaters could be, let me know. My doctors aren't worried, but I 100% am. I'm young, why am I having eye issues? I don't wear contacts and only wear glasses when driving. 

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I have talked to a few doctors, had various tests done including a CAT scan but none of the tests ever gave any results. I was diagnosed with migraines (even though its not plural, it's just one that has never gone away) and given multiple migraine medications. Sumatriptan does not work and actually makes my head hurt significantly worse. No pain medications have any effect on the pain, I have tried many OTC and prescription meds, from aspirin and ibuprofen to stronger stuff like norcos and percocet, but nothing has had any positive effect. I have been prescribed two different antidepressants but they have the unfortunate side effect of making me tired and drowsy, which when added onto my already fatigued state makes it nearly impossible to get out of bed in the morning.

I am writing this because in the past few months my head has been hurting me significantly more and to be honest it is scaring me pretty bad. I have not had much luck with any of the doctors I have seen, they have no idea what is wrong with me and just give me scripts that don't work. I am not too familiar with migraines but I don't seem to fit the symptoms, except that my head hurts. A doctor at UCSF told me that migraines come in cycles but I could not find on the internet someone who had cycles with constant pain lasting many years at a time.

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It may help to know I am female and in my 60's. Have suffered all types of migraine since I was about 13. I don't drink much either. Maybe a glass of wine now and again.

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2 days ago a notice a big dark area (2/5 of the vision field) on the upper center of my vision field. Sometime it was so dark i couldn't see my finger when i move it up to this area. But with outside day light i am able to see through a little bit (but still darker than other area).

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But i haven't check with ultrasound yet.

I am still worry sick. Is it possible for the retinal to re-detach again with silicon oil still inside?

It is possible for the retinal to re-detach but Ophthalmoscopy doesn't pick it up?

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I can't get in to see a doctor for 5 weeks and my ophthalmologist is not available either. My only choice is the ER to hope they have an eye doctor on call. A general doctor won't even touch this here.

Please, I'm getting desperate and scared. What do you think it could be? By the way I forgot to mention , the lights I see are in both eyes, not just one.

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