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Hi. I'm online and happy to answer your question today.
I have been suffering with this condition for almost 30 years and personally tried all of the treatments there are....
Do I understand that you personally have this condition?
I have had it constantly for 14 years, not "1" year.
Yes. Not only do I treat patients with it but I have it too.....
What meds have you tried?
All of the migraine and anti-seizure meds, flurosinine (sp), neurontin, amitryptiline, clonazepam. Dr. just started me on verapamil.
I have problems with mine but really haven't been able to find any treatment that gets rid of it completely.
There was one time, I was in the middle of a very delicate retina operation, when an attack started. After a few moments I lost most of my central vision and the inferior part of my visual field. I, calmly, removed my surgical instruments from the patient’s eye and we all sat around in the OR for 15 minutes until my vision returned. Other than that my ocular migraines have not really caused me any significant problems :o)
I did have good luck with verapamil. Beta blockers, while they helped, had too many side effect for me
Since my large scintillating blobs are constant, this is a constant annoyance. For some reason, the problem got worse after cataract surgery. My peripheral vision is now diminished so I almost lost my driver's license and cannot see clearly at my feet. Use a cane or walker and also have very poor balance, which I guess is because of my poor vision.
Of course, the good news is that this is not a sign of anything more serious.... :)
Hmmmmm.......you shouldn't have lost visual field from ocular migraines. Was the field loss documented with formal visual field testing at the ophthalmologists office?
Yes, I know that. Also that it is not painful. I do not have headaches. Dr. Peter Goadsby at UCSF is beginning a study of this condition. Did you know that ? His assistant is going to interview me by phone next week.
Yes, opthomologists say they can't see a reason for peripheral vision loss. RP runs in my family but neither of the docs see evidence of that or any other "eye" disease.
No. I'm in Wisconsin and as a retina specialist, and since my symptoms are pretty well controlled now, I've not kept up on the very latest and greatest research on this topic.
It does, however, seem like you are plugged into the best care you can get....except, of course, from the wonderful docs at Just Answer lol!
Well, back to square one where neither of us really understands this phenomenon and no one else seems to either!
RP, if you were having field loss, would show up on clinical exam. I treat a number of RP patients with various sub types and inheritance patterns.
You've got that right :(
Yours is much worse then mine. But the field loss really doesn't make sense. Something else must be going on.
The folks at UCSF will hopefully figure it out. I rotated through there when I was in medical school....used to live in San Jose. It's a small world, eh?
I tend to think my peripheral vision loss is due to not being able to "see through" the increased scintillating activity that has occurred since cataract surgery. How would you suggest I find out what else is "going on" when highly regarded retinal specialists see nothing?
If they, and neuro-ophthalmologists, have found nothing, I think you may be stuck being what we doctors call "a very interesting case" Not a good label to have....
Yes, it's like "living in interesting times," the Chinese curse, which is also true today.
True........but this life we have is the only game in town.....
I wish I had some magical insight for you, but I think you are already getting the best care out there....
I continue to check the blogs regularly, but not obsessively, as I live as active a life as I can with this condition and my age, 74. The good things about the blogs, which reveal that almost no one has gotten help, is that it has brought the condition to the attention of neurologists/opthos. When I first saw a neuro at Mayo clinic, it didn't have a name and she had seen only one other somewhat similar case. She dubbed it "scintillating scotoma." and thought only about 500 people in the world had it. There are several hundred on the blogs alone, so docs now realize that it is prevalent enough to start trying to find out what is going on. Thank you.
You have a wonderful attitude. We could all learn something from it. It was a pleasure to chat with you and I wish you the best with the folks at UCSF. Have a good weekend.
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