Ocular Myasthenia Gravis - Eyelids Closing?


Apr 14, 2015

I am a 62-year-old white male who works a 50-hour-a-week job in public relations, and I have Ocular Myasthenia Gravis. It was diagnosed about 5 months ago when my wife said, whats going on with your eyelids closing? I thought it was sunscreen reaction, but the neurologist did tests and said MG.

I have been taking Mestonin since, and have varied the dosage to find out what works. However, nothing works. The MG comes and goes, and moves from the left eyelid to the right eyelid at a moment's notice. And, I have an ileostomy due to Ulcerative Colitis. I received this lifesaving surgery in 1991, and have never had problems. However, Mestonin causes endless diarrhea, which is bad (really bad!) for a person who wears a pouch of poop on their tummy.

When others face a similar situation wherein Mestonin is not working, what do you do? Do you go straight to Prednisone? I cannot tell any difference in taking Mestonin or not taking it, regardless of the dosage. There are good days, but mostly bad ones.

I do not have double vision or any other weakness symptoms.

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I had something like this a couple of times in the past and the optometrist said "ocular migraine" and there was nothing to do for it but to let it pass and if I was driving just pull over.

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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.

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The only reason I went opticians was because of headaches and eyes hurting.

Im due to go back to the consultant in December. For the majority of the time I suffer with headaches, with an almost tired/drained feeling and my eyes are either tight or dry. I put the drops in just because I go to sleep, when i wake up, my eyes are so dry and blinking doesn't help, I do have some moisturizing eyes drops.

I thought there were no symptoms of ocular hypertension? Are the headaches due to the eye issues? i work in an office with a computer, spreadsheets, numbers etc and I struggle most days. My problems usually aren't as bad at home, however it can takes weeks before I have no headaches and then they are back quickly.

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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. 

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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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