Vertical Double Vision anyone?

[tflynnhk]

Was diagnosed with PA in 2013. A year before diagnosis was suffering bouts of what I now know as Vertical Double Vision. At first did not know how to describe it. I can see but can't make anything out and no balance. Took a couple of years to realize I just needed to close one eye.

Just wondering if anyone else is suffering from this? Been seeing a doctor for 3 years and still no diagnosis. Incidents occur once or twice a week and can last from a few seconds to 20 minutes. Can happen walking down the street or sitting at my desk.

During one bout (sitting on couch watching TV) my son asked me if I was having a stroke. My left eyebrow had fallen. This is the whole eyebrow, not just the eyelid. Blood test for Myasthenia Gravis came back negative and all other tests are inconclusive for various reasons; electric shocks too painful to endure, can't maintain upward eye direction for long enough, etc.

Like my tinnitus that no one can explain, is this another neurological symptom of PA I need to just put up with?

[clivealive Forum Support]

Hi tflynnhk the tinnitus may well be caused by the P.A. as it is one of the symptoms.

When I was diagnosed with P.A. 45 years ago I was "warned" by my then doctor that my eyes would need to be checked regularly. They never were until two years ago when I was diagnosed with Type 2 diabetes and was sent to have my retina checked as part of the "routine" (now done annually) and it was found that I had damage to my left eye.

When I asked my (now) doctor whether this damage had been caused by the P.A. or the diabetes she said she couldn't tell.

Have you had your Folate level checked lately?

I am not a medically qualified person but hopefully there are some on here who will be able to give you good advice.

[tflynnhk in reply to clivealive]

Hi clivealive, My first blood test, a couple months after I started injections, showed folate levels at the very bottom of the range. Doctor ignored this until I pointed it out to her (was not highlighted in the report) and she now prescribes it at every visit.

Have fasting blood tests every 3 or 4 months and clear for diabetes, so far.

Been going to the eye hospital for the last couple of months for tests. Just got the results, and they say my eyes are ok, no neurological or muscular issues found.

[helvella]

Some years ago I suffered a few bouts of monocular diplopia (double vision in one eye only).

I first had it happen when looking at birds in the sky. Suddenly, instead of maybe a dozen red kites, there were two dozen. The "second" bird was at about an 11 o'clock position - up and to the left just a bit from the "first" bird.

My bouts lasted from seconds, to - at worst - hours. But not very often, probably only twenty times in all.

I was also suffering extremely painful shocks up from my jaw across my face. And I have always (since about age 8) suffered tinnitus - but it has got worse over the years. That still goes on...

Unlike you, have never even had a B12 test. I did start taking oral 1000 microgram methylcobalamin quite frequently, sometimes several in a day. I am convinced it helped, but I seem able to do without now. However, I was also diagnosed and treated for hypothyroidism. Very difficult to be sure what really helped in the end.

Don't want to overclaim, or mislead, but there were enough points of similarity to think a response might be of some marginal use.

[tflynnhk in reply to helvella]

helvella thanks for the reply. Did not pay enough attention to the position of the "second" bird. It's really disconcerting when everything is doubled vertically. Will try to pay attention next time. Unlike you, I can stop the double vision by closing one eye but still feel unbalanced and do not trust myself walking.

I do IM injections, once a week, of 1ml B12 (cyanocobalamin). Had thyroid checked, all clear.

Got woken up the other night, thought someone's car alarm had gone off. Was waiting a long time for it to stop. Rolled onto other side, it stopped, realized it was tinnitus. First time it woke me up

[Gambit62 Administrator]

I can't say that it is something that I have experienced or something that I have seen mentioned on this forum in the last 4 years since I've been using the forum - though that doesn't mean that it couldn't be related to B12 deficiency.

This article talks about the different types of double vision and what causes them

medicalnewstoday.com/articl...

what you describe actually sounds as if it is the binocular version rather than the monocular version as covering one eye seems to resolve the problem. And given how you describe the episodes it sounds like it is the result of temporary muscle weaknesses - which would fit with the problem with your eye-brow.

Have you mentioned it to your optician and/or GP

[tflynnhk in reply to Gambit62]

Gambit62, been checked for Myasthenia Gravis. The blood test was negative and all other tests inconclusive: electric shocks to painful, can't hold eyes in up position long enough, etc. Tried the MG drugs for a while and no change.

Just finished a round of tests with ophthalmologist and she said all ok.

Had a brain MRI about 6 months ago. Showed I had a stroke at some time and doctor said, because of the area of the brain the stroke occurred, it's not the cause.

[Gambit62 Administrator in reply to tflynnhk]

from reading the article what you describe sounds like a temporary and intermittent muscle weakness - which could be related to B12 - which I know isn't listed as a potential cause but has some very similar affects to MS (which is a potential misdiagnosis of B12). Does sound, unfortunately, that you are going to live with it as sounds rather unlikely that you would be able to get to see optician in the time window for the attacks.

Are the attacks constant or do they get more frequent as you get nearer to a maintenance shot?

[tflynnhk in reply to Gambit62]

I inject myself weekly, so more routine than maintenance Incidents occur anytime (lucky I don't drive anymore).

To tell the truth, I don't really expect a solution to this. Had all the tests modern medicine have to offer, with no conclusive answers.

I started this thread to see how common VDV was for people with PA and anything my doctor may have missed. I have my answer. Thanks.

[mjccouch]

I have B12 related binocular diplopia. My recently found Pernicious Anemia showed on MRI to have caused "flares" in my central nervous system in the area controlling eye movements. Could have been seen as MS but I had macrocytic anemia so neurologist correctly surmised it was B12 related. After a year of high B12 supplementation, the eye problem has improved but not gone away. The problem is not debilitating but can make driving and hand/eye coordination a challenge. I am still pursuing possible remedy. My current opinion is that daily eye exercise therapy is likely my best solution.