Ocular/Retinal Migraines For 2+ Years. Please help!!!!

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Hi all,

I'm a bit of a newcomer to migraines but will give a breif outline.

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 hyperchondriac 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 there 'retinal' migraines, or can offer any support or advice? Any replies would mean so much to me. 

Thank you smile.

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  • Posted

    Ask for a referal to a neurologist - your GP does not have a right to refuse.

    Yes the aura can just be visual and in one eye only. The eye check would more than likely have picked up any sign of a brain tumour as the aura, in your case, is in the eye

    Time wise have you tried having your glasses tinted as light can trigger migraines

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    • Posted

      Thanks for the reply!

      Funny you should mention lenses, I used to have my prescription with the 'transition' lens coating for about 10 years, since 2010 I haven't had the tint. Definately something to consider!

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  • Posted

    Firstly any onset of Migraine is a Frightening Experience so dont feel like a Hypocondriac you will find on here you are not alone .. I have had Migraines most of my Adult life and still to this day on a occassion think my god what the hell is going on .... Along side which i have my other partner in crime Deppression Again a adult life time whom i live with quote not suffer with ... Each i think is linked to each other my opinion not a medical opinion , for you see it is the brain we are talking about here the most complex part but yet feared part of out anatomy . I can and will offer your support and a sense of humour . It may take some time to find your trigger but dont give up we are remember all individuals so what may well be great for one not so for another .. As with myself and my Happy Tabs as i refer to ... Now theres are few smiler tales i could tell if your ever feeling down . Kindest wishes always xx
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  • Posted

    Thanks for all the replies so far. 

    Is there anybody that experiences these migraines that can offer any advice?

     

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  • Posted

    Hi all,

    Just an update. The frequency has now increased to practically daily migraines. 

    I've seen a neurologist privately and had another eye check up. 

    Eyes perfectly fine, pressure in both eyes is fine. 

    Neurologist examined me and have had an MRI scan. It came back completely normal. 

    I'm at a loss as to what to do next. I have an appointment next week to discuss therapy/meds moving forward.

    Even if I don't drink alcohol/caffeine etc they still are coming on almost daily. Over half of my day every day is spent with one of my eyes patched and battling a headache

    I'm considering getting a private neck xray/scan to rule out anything tension/posture related. 

     

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  • Posted

    Hey! 

    I've had migraine auras since the age of 11 (now 23) They were prety standard auras then pain (often no pain. migraleve help too) 

    I've suffered with health anxiety over the past 12 years. It became extreme around 2010/11 and i started getting (What seems to be) Retinal Migraines. They began when i had derealization and i beleive stress has caused mine. They happen about 4 times a year (I know not as much as yours) And last 1-2 mins.

    I've never been diagnosed with any migraines - But with a family history we kinda knew what was happening at age 11. My retinal migraines consist of light, stars and sparkles. They are in one eye (unlike the 2 eye's auras - which i get a couple a month on average..give or take)

    It seems you've made all the right moves in getting help .You'll notice that over time migraines can increase and decrease and often for no reason. I've gone through bad and good spells.

    I've read horror stories online about Retinal migrianes (because that's me!!) But you need to know that more often than not they don't cause any severe problems. 

    "Although frightening, ocular migraines are typically harmless. Most people recover fully. They can sometimes cause damage to the retina and its blood vessels. Permanent vision loss is quite rare." 

    So yes, they can cause damage. But it's rare. And with you having a good neuro/doc/eye doc i'm sure they'd be able to monitor it. Which is great. 

    My eyes are fine after 3 years of retinal migraines. But they are a worry! Because I'm natrually prone to worry over my health. It makes me wonder, with your worries, if anxiety could be a rooy cause?

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  • Posted

    Just to add an update to this thread.

    I am still experiencing these one-sided vision problems practically every day. 

    I have noticed a few things, and done some experiments over the last month or so.

    1) If I take painkillers (ibruprofen, paracetamol) it removes some of the headache pain but the vision problems persist.

    2) The right eye affected is hard to the touch, and feels like the cornea has enlarged. More rarely there is very mild pain in the eyeball itself.

    3) The only thing that seems to provide relief is if I go to sleep. If I sleep for 2-3 hours, usually the symptoms don't return until the next day. 

    4) I have noticed on days that I exercise intensely I get a longer period without the symptoms coming back. 

    5) I have cut out alcohol/caffeine and no difference. Also avoided computer use and no difference. 

    One other biggie to mention, is I have depression and anxiety. However on days when I go out (say a night out) when there is no real stress that day, these vision issues still happen. 

    I am now wondering if this is blood pressure related, or perhaps a sign of glaucoma or maybe some sort of sinus/eye infection? I am considering getting an appointment with an opthamologist to thouroughly examine the eye before and during an attack so see if any differences can be measured. As I understand it a migraine is largely neurological, so if I do experience pressure increases in an eye or swelling, I wouldn't actually associate that with migraine. 

    Also as mentioned before I will also look into a good head/neck x-ray.

    Unfortunately for the depression side I am being offered SSRI's but I feel to see how these will magic away these very physical problems. 

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  • Posted

     So sorry to hear you have these symptoms. It is very scary to have this happen. 

    I do not blame you for not wanting to take the SSRI's. Have you looked into Holistic treatment for your issues? There are a lot of good Drs who think outside the box and offer alternative Meds and such. Maybe that would help you?

    Good luck.

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