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

Posted , 20 users are following.

paul1985
paul1985

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.

2 likes, 24 replies

24 Replies

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  • lynsie69348
    lynsie69348 paul1985

    Posted

    Hi Paul!

    Are you still getting the migrants after the ten days you mentioned during exercise? ?

    I now have them a lot and concern, nobody seems to know how to handle it,the doctors I mean I love to hear from you!

  • jonathan88269
    jonathan88269 paul1985

    Posted

    Hi Paul,

    I know it's been a long time since you posted. I was curious if you found a cure for your ocular migraines. When I read your post it matched exactly what I was going through for ten years and a steep rise in occurrences in the last year. Constant ocular migraines 4-5 a day and terrible headaches . I've seen so many experts and have had so many test and no one could help. This was until my doctor told me 6 months ago that I have high blood pressure. I've know for years that I had high blood pressure and I've ignored it. This time my Doc insisted that I go in the waiting room and take a pill called Azor, or a generic which I take now called Linsinopril. I guess my pressure was so high, that he insisted. About a week later I noticed that I've had no migraines, ocular distortion, or even the slightest headache. It's been 6-7 months now and not a single event. Seriously it cured me. I hope this helps you, it was a mirical for me. I was starting to get very worried that I'm having neurological problems. Turns out it was the pressure in my vains and my body was trying to tell me something. I'm still blown away at the fact that I've had not a single even small headache on six months. I used to have them daily.

    Take care,

    Jonathan

    From Fallbrook California

  • ktyler44
    ktyler44 paul1985

    Posted

    I know it's been a while since you wrote your post, so I hope you get this reply. I have had classic migraine with aura for over 30 years. Those are the ones where I get the zigzag flashing arcs for about 30 minutes before the headache. Over the past 10 years, I have quit getting the severe headache but still get the aura. With the aura, I could close or open my eyes or close one or the other eye and still see it. HOWEVER, a few years ago I started getting a different type of aura. It would suddenly start to cloud over dark as if I were going to black out or something, but I wasn't passing out. Then it would turn into an after image like you get after a camera flash. These only last a few minutes, but they are different in that it is only my left eye. If I close that eye, I can see clearly. Just like you described. I had all kinds of tests run only to be told that this is a retinal migraine. The difference is that the ocular migraine aura begins in the brain and the retinal migraine is in the eye/retina. I don't know what triggers mine other than stress. Certain foods seem to trigger my ocular auras. I think my neck may also contribute as I have had a lot of problems with my neck. If I put my head down when one begins and massage it with upward strokes, it will often go away quicker.

    • kim27383
      kim27383 ktyler44

      Posted

      That is interesting what you said. I started getting the flashing lights in my eyes after bouts of high anxiety with other health problems and tons of stress. I don't have e high blood pressure and I've seen an optometrist and a neurologist but I have an MRI scheduled next week. I still worry tho.

  • DavidSL
    DavidSL paul1985

    Posted

    Hi

    I've recently started getting Ocular migraines and for the past 2 months have been getting between 3-4 a week at various times of the day.  I have had a thorough eye examination which has shown nothing to worry about and seen several different GP's at my practice who after examining me all state that it is an Ocular migraine and nothing to worry about, but this doesn't help me each time I get one.  I have suffered with normal migraines all of my life and know the triggers to avoid and I am now wondering if they have mutated into the Ocular migraines.  Mine start with what I describe as the Kapow! zigzag pattern (when somebody gets hit in like a Batman and Robin comic book) in the middle of my eye, this follows wherever I look.  This lasts for about 30 minutes and is usually followed by a headache.  I tend to get them if I catch a flash of sunlight bouncing of a car or if i open curtains into bright sunlight etc so I may be sensitive to light. Also, I work on a computer all day and if I am working from a list and entering onto the computer I get one then.  Strange though, when you've had one and go back to the list, it's like, OK, you've had your migraine for today, it's out of the way, you can carry on now and won't get another one.  I do get stressed from time to time and the doctor said this was a possible cause, but then again I'm getting stressed at not knowing what's causing my migraines.  I have looked at stress busting methods including finding Yoga at the desk video's on Youtube but haven't tried them yet.  The doctor has suggested keeping a diary of when the attacks happen and what I was doing prior to them, to see if any patterns can be spotted.  Although at first I was scared and worried, now I'm not overly concerned when I get an attack, I know that it's going to last 20 - 30 minutes, sometimes I get a headache which usually goes with paracetamol. I feel reassured that having been to the opticians and the doctors that there is nothing seriously wrong, but I just want to get to the bottom of whats happening so I can prevent further attacks.

    David

    • ktyler44
      ktyler44 DavidSL

      Posted

      It is not unusual for migraines to change over time. I used to get the full-blown headache and vomiting after the aura, but over the years, it has been reduced to mostly the ocular migraine aura without headache or with mild headache. I have also added having retinal migraines now, though. I know stress aggravates mine. I hope you find your triggers.
    • laurie01
      laurie01 DavidSL

      Posted

      Do you by chance have neck issues, I get them when I come looking down for a while or up. I have a lot of degeneration in my neck.

      Laurie

  • sarah40370
    sarah40370 paul1985

    Posted

    Hi Paul- I know this is 3 years old but I wondered how you are now. I too get visual disturbance on lot in one eye.
  • steve03900
    steve03900 paul1985

    Posted

    Hi Paul it’s been a long time since you wrote this but I have the solution. I have this problem and I stopped eating grains. Go fully paleo for a few months and they should stop all the best
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