posted 03 June 2003 03:35
After having many problems and finally getting to the point I just can't see... and going to 2 Lyme literate eye doctors this past month.. I have learned some new information that explains some of my eye problems. I thought by sharing this information here, it might help others?
Below... way below... is a partial symptom list dealing with my eyes. I don't have all of the symptoms all of the time.. it varies... and now I know there were many things I "wrote off" and blamed on something else.... and they are not listed here on the list.
For example...
I have noticed that now I "hate" to read. I actually LOVE to read.. and I collect books... but not anymore... and it is sad to me that I lost the ability to read.
Normally when I have a "hate" sensation.. it is because I "can't" do something anymore. MY brain responses are off a bit and things like emotions don't register properly all the time...
Actually, I think I like the word "hate" a tad more than "can't" ... keeping in mind, neither word was a part of my vocabulary before Lyme. Both words in my opinion should not have a place in my world.
Anyhow... I was diagnosed with:
Severe something... darn that brain...
Oh.. severe convergence disorder.
Extremely dry eyes.. some of the worst.
Post concusion syndrome (big word for headaches)
No night vision
Bad depth perception
Blah blah blah...
Other things, can't remember them all right now .. but not important to this discussion.
OK...
Convergence disorder-
I started seeing or feeling "foggy" here and there.. and sometimes blurry... and sometimes double.. or what I called one and a half vision. IMPORTANT to note it may not be Lyme brain fog.. or neurotoxins causing the foggy stuff.. but an eye problem. I missed that and so did everyone else.
If I would try to read I would have to strain and squint... and then if I looked up I couldn't see distances.
I got so bad that now I can only read one line before I "blow out my vision" (I don't know what else to call it). So now I turn away from anything I might be tempted to read. This is VERY limiting for me... annoying... and life altering. Hard to shop for food... hard to drive.. hard to walk.. and no fun anytime else.
So... I stopped reading except on the computer.. and my screen was special made several years ago because my vision was so bad. My computer screen is the size of a small car. OK... Not really THAT big.. but close.
I made myself completely stop driving at night for the past few years because it is so bad... which really puts a damper on activities.
What I was told- my eyes are seeing two different things at one time. The right eye sees and tries to focus on one thing.. and the left eye tries to focus on something else because it isn't working WITH the other eye. They won't work together, plain and simple.. but I didn't know that.
This puts a BIG strain on my eyes.. my brain.. my energy limits, my ability to do things, my frustration levels, etc. etc.
What is happening now is... My brain shuts off the images from my left eye and won't forward them to the brain to disect and utilize. Kind of like an eyeball "sit down strike"! hehehe
While doing the tests at the doctors offices, I couldn't do them sometimes unless my left eye was closed. To me that was a normal thing to do... and it was how I was compensating all this time.. but doing it indicated problems.. cause that isn't "normal".
Also when I was testing at the offices I would see what looked like a lunar eclipse in some of the tests...
While looking at something, my right eye would focus and my left eye would get a sort of dark moving ball from the inside of my left eye moving towards the outer side of my left eye.. slowing blocking off my vision. I never saw that before.. it must have been faster or I wasn't paying attention to it?
I only knew something was wrong but no one ever caught that problem before. It was blamed on Lyme but no one ever gave a reason or explanation... or told me I could get help to fix it.
It is actually a BIG problem and explains MANY of my symptoms and inability to do things. It is often seen in folks who have ADD (Attention Deficit Disorder) and other problems.. and can be the CAUSE of those problems.. especially in children.
I have stopped driving at night... had to stop driving in the rain because of the water on the windshiled and the movement of the windshield wipers throwing my vision off.. etc.
My most recent new problem... or one that finally got me frustrated was.. I can't function well on a windy day. DUH.. that seemed stupid to me.
I felt "beat up" after being outside on a windy day... even if I wasn't IN the wind I was exhausted and headachy and icky in a short time.
I now think the moving trees and leaves and everything blowing around made my eyes ... which are focusing on two differnt things at one time, remember... well it made everything worse.
I was trying to focus on everything as nomally I would with this problem... but everything was always moving when the wind was blowing... and it was making it much harder to focus and respond. I even blamed the ragged feeling at the end of the windy days as being sinus related because I though maybe pollen was being blown around. Sooooo... I am pointing this out because I wonder if others are writing off these symptoms as something else also?
I was ordered to do a sleep apnea test, a bunch of blood work to rule out other things, an EEG, and an MRI of my brain. I considered it and made an attempt. My first test was the MRI.
It was a wicked disaster and set me back nearly a month. I reacted to it like some Lyme folks do.. but this was HORRID. I described the pain afterwards in another post as feeling like I was giving birth to a 40 pound bowling ball through my left ear. And I wasn't exagerating. NEVER AGAIN. The next MRI that is ordered for me will be on my corpse! I still have a slight headache and am weak... but I am improving slowly from that diaster.
I am just now getting back to my "normal crummy"... and I am not doing the other tests. BIG time insurance problems involved.. and HIGE stress trying to deal with it all....
OK.. I am sorry this is so long.. but I was able to miss all this in myself.. and all the doctors missed it in the past.. and I wonder now if others are being missed? Hopefully someone will see something they relate to here and will get help.
Good news.. there is help. They think I can do MUCH better functioning and will be much more "normal" if I get the new glasses and do "vision therapy" to retrain the eyes and brain to work together.
Soooo.. if you are diagnosed with these problems... there is hope.
Unfortunately the vision therapy won't be covered by MY insurance... and neither will the glasses. The doc said most folks have vision training for 12 weeks... about once a week... with instructions to do at home.
He said I would need a minimum of 24 weeks... due to the severity I guess? The trip would be a 2 hour drive one way.. two hours back. VERY hard on me... Soooooo... maybe someday?
But you might have a closer place to help you. So.. do look into it if you think this may be your problem. They are SURE the therapy will work.
Hope this helps someone down the road...
Here are some of my eye problems... just for reference.
By the way... they asked me why I waited so long to get help...
HA! They KNEW I couldn't even park my car between others on the street... couldn't read a book.. was really limited in many areas by the test results.. etc... and wondered how I was functioning alone by myself all this time.
I told them after having multiple tick borne diseases and getting hit by a truck it was taking a bit of time to come back up and I could only address ONE thing at a time.
They smiled.
Sensitivity to certain kinds of light, such as:
A. Flickering light by fluorescent lights- causing panic attacks, misery, violent behavior, craziness, crying, or other inappropriate responses
B. TV or computer screens sensitivity to where I can?t watch them or use them
C. Headlights of oncoming cars or shining reflective lights hurt eyes and confuse me
D. Halo?s around lights, especially headlights, and reflective street signs
Poor judging distances and depth perception
Driving and reading a map- no can do. If straining to see small writing or actually
normal writing (even for only a minute).. my vision is very blurry for about 15-30
minutes and I can?t focus on anything past close up and my eyes hurt and are very
sensitive.
Difficulty switching from near to far vision. Delayed reactions.
Swelling around eyes and eye lids
Eyes water for no reason and light makes them water more and hurt
Pain in eyeballs
Left eye watering only sometimes
Can?t focus if even a tiny spot of dirt is on the windshield or on my glasses
Blurry vision with foggy overcast.
Squinting a lot even with glasses
Double vision
Mashed vision- or distorted words and lettering. Looks like a word was written on top of a mud pile and someone sat on it... that is how it looks to me when I see it sometimes.
Floaters- triangle shaped or rectangle shapes- dark box with dots inside on clear
background- white, silver or black colors
Eyes feel like sand is in them and they ache
Glare from anywhere makes me want to bury my head in a bucket
Yellowish, greenish, or white discharge from eyes sometimes
Foggy covering over eyes
Can?t focus far to near and back again- sometimes all day long and for several days
Like looking through a light white film over everything I see.. no sharpness to images.
Left eye can?t turn to the left sometimes
Dark circles (sometimes purplish color) under eyes and swelling or puffy
Real red on the inside of lower lids
Transient blind spots in the center of my vision
Sensations that the light is fading out or getting dull
Argyll-Robertson pupil- left side
Unequal pupils.. I feel ?out of it? when it happens. Like non-responsive?
Pupils don?t always close together at the same time
Sunlight hurting eyes to the point of pain, tears, dizziness, and nausea
Left 1/2 of vision in left eye gone sometimes
If the room goes dark I fall to the floor. Can?t stay upright. Can?t walk thru a dimly lit room without swaying and tipping over or bouncing off walls. Must lean on walls or
hold on to things.
Red or pink in the white part of my eyes.. sometimes real bright and noticeable.
Eyeballs hemorrhage and fill with blood and it lasts weeks till it clears up.
Most recent... just before a herx and most recent brain swelling my eyes started seeing
things as mashed ...and in general I only had about 1/4 the vision power I normally have.
This continued for about 10 days then cleared up like someone turned on a light switch.
Lines of words on a page curved in the middle... like looking at a straight line but it is in the form of a smile.
Examples of eye problems:
I need at least 3 pairs of glasses for different distances and then 3 more for light/dark use.
My eye sight was 20/10 prior to all this. I can?t focus if even a tiny spot of dirt is on the car windshield or on my glasses. I keep window cleaner and towels in vehicle to
constantly clean windshield. My eyes will focus on the spot of dirt on the windshield
rather than what I am looking at while driving... and then my eyes go back and forth.. like a camera while trying to focus on a close up flower and the background scene at the same time..zoom in and out and in and out... fuzzy close or fuzzy far away.. constantly moving.
I try to ignore spots but it seems I am drawn to them or can?t focus on anything but them?
The Bridge cross bars overhead.. or traffic cones.. I get a weird feeling, hard to describe.. like I am sinking and low to the ground. As if the bottom of the car is
at road level and there are no tires on the car and my feet will start dragging the ground if I don?t lift them up.
Mirrored walls make me fall flat out on the floor or loose my balance. Clear glass
windows in a wall make me loose balance/orientation. I am the life of the party without a drink!
In a shower the balance is lost if printed designs are on a curtain. Can?t stay in shower without getting panicky feeling. Had to change to opening the curtain.. then to solid white walls and curtain. Can?t close my eyes in the shower without falling into the wall.
Sometimes I have to look at my arm to make it move where I want it to go.
Upsetting for some reason to look at small patterned designs or stripes. I get a ?hyper?
feeling or dizzy or both?
If the sun suddenly goes behind a cloud.. sort of dodododo dodododo freaky feeling. I
get spacy or something?
Venetian blinds and sunlight coming through them make me nauseated and/or
disoriented. I feel as if I will fall over out of a chair.
Barrettes hurt my head after a few minutes (bruised and mushy feeling, severe pain) and
make my muscles spasm and neck pull and messes me up for days. A nickel in my back
pocket feels as if I had a poker sticking me in that spot and then that leg cramps, then
back hurts, feet hurt, and muscles spasm all around that area. Same with a belt, bra,
anything touching my body. Princess and the pea to the extreme.
Earrings and the ear pieces on my glasses make my ears feel as if they are on fire and are
lopsided sometimes.
When the brain swells I can?t stand to have anything touching my head or face. I feel as
if I am cross eyed sometimes but never bothered to look to see. I have to close my eyes a lot to keep the pain down.
Can drive a vehicle with shift knob.. holding onto it all the time to keep more level or
balanced. It is difficult trying to drive an ?automatic? vehicle because I don?t have the
stick shift for balance.
I use an ear plug in my left ear when driving and don?t remember to down shift gears
when needed. I don?t know to shift gears or where they are if I couldn?t hear the engine.
In other words, I must use ?hearing? as an ?automatic? guide as to when and WHERE to
shift?
I LISTEN to TV instead of watch it.. and mostly I listen to old reruns of familiar shows or listen to movies over and over because I can?t follow the new shows by just seeing them. I hear TV... and know the characters that way.
When tested they found out I don?t recognize peoples faces. I notice it because I must
hear or see someone walk or move to know who they are.