Occular Migraines-I can see the light but nothing else.
Posted , 8 users are following.
I starting to feel a little like the latest version of the Merck Medical Dictionary. Doctors are now attaching labels to every symptom after so many years of "It's just ideopathic". My most recent experience this week was losing my vision in one eye for an hour or so. I had white spots of frosted glass covering the central and peripheral vision. I have been told I now am having Occular Migraines. Anyone else have Sjogrens related Migraines or vision problems?
1 like, 18 replies
margaret22116 Cowgirl918
Posted
I did have with Behcet's not Sjrogren's but they are very similar disorders. Pretty awful isn't it. X
Cowgirl918 margaret22116
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Yes it was. And now I worry about the next one especially should I be driving. I was told just to pull over and wait until it passes. That sounds like fun
I guess I thought I was aware of most of the symptoms with this diease but suprise, suprise.
tj268 Cowgirl918
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Hello, that mustve been beyond frightening! I had my whole hand go numb for a day and I have constant migraines and have eye floaters but do not know if it is SS related. Last night though I couldn't sleep because of pain in my eye that felt like gravel rolling all inside my eye. Horrible pain! Never had ss in my eyes before so I don't know if this is a symptom or not but guessing it is.
How are you curing your headaches if you are able?
Cowgirl918 tj268
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mariaw Cowgirl918
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Hi Cowgirl918, I've been having ocular migraines for many years. When
I was in my 20s they were like yours, now I have them 4-5 times a year and
they are more like 'light shows' with flashing black and white in my
peripheral vision. They are sometimes accompanied by a slight headache,
last between 20-40minutes and leave me feeling washed out. However I
was diagnosed with SS only a year ago and didn't realise they might be
linked. I will mention at my next appointment. Hope days are few and far
between.
mariaw
Posted
Cowgirl918 mariaw
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Thanks for sharing. Your story is very helpful. I won't be as scared when mine progress. The doctor told me that they probably would. I am like you and only had a slight headache. I am glad not to have the pain to go with it. I did feel washed out and was told that the prodrome or early phases can start days ahead so I am trying to pay attention. Any idea what your triggers might be?
mariaw Cowgirl918
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Well, I think I tend to get one when I've been really busy and, thinking about it , following a few busy days. So trying not to get over-the-counter should help and some early nights!
mariaw
Posted
Cowgirl918 mariaw
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Sounds like a plan. I am always told to avoid stress and this happened one week after my younger Sister dies. Can't avoid everything. I don't know of any other triggers at this point but I will definitely be on the watch in the future.
Kathy123 Cowgirl918
Posted
I don't believe your occular migraines are connected to Sjogren's. They are common, but can be very upsetting. Mine have come and gone, over the years.
I know what you mean, feeling like the Merc Manual myself. I went to a new rheumatologist, whom I quite like, but he has referred me to a surgeon for my parotid glands, an orthopedic surgeon for my bunion, another orthopedist for my shoulder pain, and an ophthalmologist who specializes in dry eyes. I plan to take one thing at a time and try not to take any of it too seriously.
Cowgirl, I hope everything works out well for you!
Cowgirl918 Kathy123
Posted
Kathy123 Cowgirl918
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Hi Cowgirl.
I know that autonomic issues can mess up everything, but in my case, the migraines predated the Sjogrens by over 30 years. Also, stress plays a big role with migraines, so it's not easy to untagle the causes of something like migraine.
My new rheumatologist thought I should definitely have my parotid glands biopsied, since they have been enlarged for a couple of years, and he sent me to an ENT surgeon. The surgeon said that since my glands get bigger and smaller (and cancer only gets bigger and bigger), he is not inclined to do biopsies at this point. He has ordered an ultrasound, and once I get approval, we will see what the radiologist says.
As to their size, one gland is where my jawline meets my neck, on the right size, and it is big enough to be seen as a bulge, so my jaws look asymmetrical. It feels about the size of a very large grape. The two on the other side are smaller, The one at the left jawline just beginning to show, and the one in front of my left ear feels like a thick button. Sometimes they hurt, sometimes they don't.
Over the years, I have calmed down about new developements. My problems seem to be progressing pretty slowly, and are much milder than some of the people who post on this website. Of course, it's upsetting when something new emerges, especially when it hurts. But what can you do?
Hang in there, Cowgirl!
Cowgirl918 Kathy123
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maureen05275 Cowgirl918
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Hi Cowgirl918. I have had Sjogren's for 47 years; the ocular migraines started 19 years later and I didn't ever link the two. When the ocular symptoms first started (mine are like mariaw's and I don't get a headache after) I thought they were linked to hormonal changes but menopause came and went, they stopped for some years then came back and I would now have anywhere from 6 to 16 a year. They last 20 to 30 minutes and are just an annoyance. I now think they are probably stress related - I am always stressed - though I can never link them to particular events. My eye doctor was never concerned and Internet sites also suggest they are nothing to worry about.
Cowgirl918 maureen05275
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Thanks. I have reached the same conclusion. Just another inconvenience. But I don't like them.