I want to tap into the collective wisdom of the group. Let me try to explain.
First background for those who might not have read that part…
41 years of battling this AVM. Started in left neck and shoulder. Has expanded to very near my spinal cord and up into the brain. Treatments were in 1978, 1986, 2009 and 2018. Most of them were of the type I could recover and go on and live a relatively normal (you’d need to know my family to fully understand the irony of that statement) life. This 2018 procedure solved a big potential problem (major brain bleed potential) and left me with a whole bunch of after effects.
One of those after effects is that my vision has been impacted. I had a major case of double vision that occupational therapy was able to clear up a lot of it but not all. However, it’s no longer a quality of life issue and we are grateful for that. Maybe a more accurate statement would be that it has diminished its impact on my quality of life.
I have also had a significant problem with changing focus. If I’m doing something close up, then I look up and away from where I am, my eyes have a hard time making that switch. Eventually, they do adjust but it can be anywhere from 10 seconds to several hours until it adjusts.
After a long period of waiting along with appts with a Neuro-optometrist, I finally got in to see a Neuro optho doc on Monday. He said basically two things:
- All of the major risks to losing my vision in part or all of it seem basically fine. There are some irregularities but at this point, they are not things he is concerned about beyond watching them. He said there is a very good chance those things have been that way since I was just a wee little youngster. In addition, if it were one of those, the blurred vision would be constant and it is frequent - more than once or twice a day but not all day every day. That’s the good news and the not so good news.
- The not so good news is that since all of that checks out, it is highly likely that the vision problems are tied to my headaches. The way I see it that means a couple of possible things:
- There isn’t a “take a pill and cure it” type of possibility.
- We need to try to figure out which came first - do the headaches cause the blurry vision or does the blurry vision cause the headaches. And there is no easy way to figure that out.
- We need to figure out what sort of lifestyle adjustments might impact either the headaches or the blurry vision and how those changes can be put into play in my real world - and what that means.
That’s where the detective not the doctor comes in.
So, we can add my eyes to my right leg, my left arm and hand, my left diaphragm, my left lung, my left vocal cord and the left side of my esophagus and trachea, the left half of my tongue, my hearing in my left ear, and numbness on the left side of my face and an often mind numbing noise in my ears that literally drowns out regular voices. These are all part of the “we know what’s wrong, or we think we know what’s wrong but there is really nothing we can do about it.”
I’m overwhelmed with excitement at the good news.
But I’m also not going to give up and settle for where it is at unless this is truly the best we can do. That’s where I’m hoping you all can help me.
- Know of any studies or anyone who has navigated the headache/blurry vision connection? I’m thinking that while it is probably not the whole thing, there is a connection. The way I look at it, if I can find and address a connection between headaches and blurry vision and it reduces one or the other by even 10%, that would be a big win in my book.
- Know anyone who has this headache/blurry condition that addressed it by altering the prescription of their glasses. Let me explain. Let’s say that my current prescription requires a setting of 5 for me to see clearly when my eyes are not in the blurry mode. If I got my glasses at a setting of 6 or 7, would it “rest” my eyes a bit and require less effort and therefore less blurry?
- Prior to this, I was a “multi screen” computer guy. I would often have two or three monitors plus my iPad open at once. I got rid of most of it early on because my brain couldn’t handle more than one screen. Shoot, for the first three months, I got nauseated just looking at my ipad sitting on the coffee table. I’m wondering, now though, if that’s changed. I wonder if my brain has a harder time with screens moving around and would actually do better if I went back to multiple screens where I had one or two that were basically stable - e-mail, calendar, to do list and the other was the one where there I might be moving from one web page or program to another.
In other words, I think that a way to describe it would be to say that my head has a harder time processing a new screen on one device - the kind of bouncing around from this to that to the next thing and would maybe do better if it was a matter of - e-mail is over here, writing is here, blogging is here and such.
Am I smoking something or is it worth trying? (And believe it or not, I wrote this before reading the post about Cannabis).