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Hi there, this is my first post. I have EDS type 3, I also have medications for high resting heart rate and high blood pressure. When I first began with the heart rate and blood pressure problems I noticed that my left pupil would be larger in lower lighting sometimes and other times is was normal. I had my eyes checked by a neurologist a while back who said that even though one pupil does dilate more than the other they both react at the same timing. I also saw an opthalmologist who said that it was Adie’s Pupil. However, in May of this year I went to see an osteopath, perhaps not one of the wisest of things I could have done because I came away from a neck and back cracking session feeling worse, it kicked off my tachycardia despite being on beta blockers and put me in a permanently anxious state for a number of days, not to mention giving me tinnitus on my right side. But what I also noticed was that my pupil on the RIGHT side this time was larger and the left was smaller. Over time I noticed (usually when brushing my teeth in the morning and noticing in the mirror) that some days the left would be big and some days it would be the right.
I wondered if this often happens with people with EDS? If this is related to dysautonomia which is what I think I do have; I have problems also with the digestive system and wild temperature fluctuations, not to mention my blood pressure going up and down dramatically, again despite beta blockers. Or if this is a vascular issue? I have asked a few Drs, often both pupils have looked normal when I’ve been in the Dr’s office, usually if they don’t dim the lights. But the neurologist and an opthalmologist did notice it.
Fluctuating pupil sizes? Anyone else?
Me too. My left is always bigger, sometimes much. Am on beta blockers for POTS. During any dysautonomic flare, both get bigger, but the left is always my big one. I get cluster migraines on the left (always left), and those make the left pupil look nearly blown out it’s so big. The clusters also give me a speech impediment I don’t usually have, and make left eye tear up-I don’t usually have enough tears to cry, despite punctal plugs. Nose gets stuffy, also left eye gets puffy just above the lid, like a shiner. With the weird speech, it appears very much that I’m having a stroke or TIA (ruled out). No true aura, just an early warning when normal lamplight turns into uncomfortable glare. Pupils diff sizes long as I can remember, the cluster migraines are a new thing. I also can’t tolerate fast flashing lights at night, like police light strobes. Triptan meds help.
When they’re really fluctuating, take a close in ‘selfie’ of your eyes to show your doctors if your pupils seem pretty normal sometimes. I take pics of dislocated joints, keep data on sleep and BP readings. Any evidence that will back up our bizarre symptoms goes a long way – especially when you have to see a new MD and you look fine. We have some fantastical stories for these skeptical people, and objective data helps them move past the ‘drug-seeker? malingerer? hypochondriac?’ thing they do, to be able really LISTEN and BELIEVE with EMPATHY. Any MD not truly understanding your personal EDS experience, will never be sufficiently motivated to really help.
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