Hi everyone,
I need some help here.
Have any of you had vision problems and/or eyeglasses making your symptoms worse?
I saw a new opthamologist today who has referred me to a neuro opthamologist tomorrow.
I am so tired of sobbing about eyeglasses making my symptoms worse, and my fluctuating vision.
Heather
When I was at my worst, I had a lot of trouble with my vision - double, triple, blurred, plus all the migraine aura - including visual snow. and I was more comfortable without my glasses, using them felt strenuous and made my symptoms somewhat worse, but nothing as bad as you’re describing. This all went away once I started the Zoloft.
My vision was much worse as the day went on, as I would get tired. Sometimes even in the middle of the day, I would get blurry and then i would get crystal clear. It was strange.
Sometimes, when I wasn’t sleeping well, all I could see out of one of my eyes was like a white cloud.
I also had symptoms where it felt like my eyes were crossing, when I was tired.
I wish I could tell you more - I’m just glad all that went away. That’s all I needed was to have vision problems on top of all of this.
Glad things went kind of okay for you today though, yes?
Julie
Julie,
Well, I seem to be at an impasse with eye docs and their prescriptions because they have no knowledge of vestibular disorders.
For example, an online friend of mine has the exact same issue I do. The stronger the reading prescription the more we are swaying.
I feel like the back of my head has increased motion and pressure and I’m going to wipe out!
The one pair of glasses actually pushed me into the floor popping up and down 24/7 whereas before, it was only episodic.
Can you imagine having your life destroyed by glasses? WTH???
I literally have to take a Xanax to get on the computer with these arrrrrrrrrrrrrgh glasses.
Things have gotten so bad, I am panicking in grocery stores because the light is affecting my brain and how it processes what it sees in that lighting.
I swear Julie, if I didn’t have to deal with vision issues on top of everything I wouldn’t be so filled with anxiety.
It is making me into a lunatic.
The Docs try and give you an RX by getting you to read the smallest line of text.
Well that’s my problem. My brain can’t handle the strength. It wants to go weaker.
I know that’s why My brain is fighting back with the vertigo saying: no no no.
Did it ever occur to these docs that all people can’t be treated the same?
That their brain doesn’t react the same to visual imput?
I mean WTH?
This pressure and motion in the back of my head is getting worse all the time.
I practically flip out these days in office settings and now sitting in examining chairs, the damn chairs move underneath me.
I know darn well one of my DX’s should be MdDS. But I do not think that’s all that’s going on.
I am sick of new symptoms all the time. If they would stabilize I could try and deal with it, but the shock of continuously having more symps,
is wearing me down. :roll:
Heather
I know what you mean. Last summer, i was only on a very fast downhill course. I kept saying, it can’t get any worse. Soon i bit my tongue, cause it did just keep getting worse. Yea, you need something to at least stop the progression. more benzo? MDDers, I hear, are lifers on Klonopin. I know, I know, you’ve told us about you and Klonopin 
Those visual symptoms sound really bizarre, not something your local opth will know anything about. I know mine didn’t. He thought I was just “sensitive.”
I know it’s hard, I really do, and sounds like it’s getting harder, but hang in there!
(How bizarre life has turned out to be)
I just remembered something. When I told a friend of my dizziness with migraine she told me her story.
she got a pair of bifocal contacts - first time. She started getting dizzy and seeing scatoma. She was having a migraine. It went on for weeks and finally she quit wearing the contacts and it went away.
my own experience. I got a pair of bifocal contacts, first time. Walked out of the docs office, took a step down a curb and felt the earth fall beneath my feet. had nothing to do with getting used to the contacts, it was that feeling of disequilibrium that I would soon come to know on a daily basis. I quit wearing the contacts but things kept getting worse anyway.
When I was bad, a year ago, when I would put my glasses on, i felt worse because it felt like i was asking my brain to do more processing and it was already on overload, so the dizziness got worse - is that what you mean?
Julie
I have some visual issues too. Eyes sometimes don’t seem to want to track properly. Feels like I go cross eyed sometimes. When all this started and gave up on contact lenses and went to regular glasses. When I took the contacts out and put regular glasses on I was really dizzy. Took all my concentration to walk out of the store and drive home. I think this was a symptom of “visual reliance” - my brain using vision more than normal to maintain balance. Changing something slightly in my visual processing - glasses instead of contacts - really messed up my balance 'till my brain readjusted to the change. It did adjust, but it took several days. Good luck.
Chaz
Yes Julie that’s what I mean.
I’m screwed because I can’t wear off-the racks anymore.
Something has progressed to the point where the stronger the + prescription, the power, the more powerful the vestib symptoms!
I don’t get this at all. But I know it happened to another gal.
She was DXed with MdDS after a plane flight, but a friend of hers happens to be a doctor.
He said he questions the DX because her new eyeglass prescription was done around the same time
and that’s when all her symptoms went into high gear.
Then some other woman DX’d with MdDS told her story of wearing her husbands glasses (bad idea) and her symptoms started right away.
I mean what in the hell is going on with prescription eyeglasses and contacts?
I have read that even people with no vestib problems can get side effects of vertigo from the wrong prescription.
Well maybe these docs need to change how they do their eye tests.
Every time I put on these reading glasses I feel whacked.
You should have seen stupid me not realizing it at first and when I was in a neurologist’s office, I had the glasses on and then took them off.
They were only on for a minute. I felt pain in the back of my head, down my neck and into my shoulders.
Then I felt WHACKED and started to panic before she came in the office. I remember my hands were shaking and I kept hitting her radio to get it to shut up. LOL.
The sound of the static coming out of the radio was driving me insane (and I didn’t know why)
So the neuro walks in, asks me to walk a straight line, and I walked like a damn drunk.
Neither one of us realized the glasses set it off. Now I know the effect.
The scary thing is, the more I pop glasses on and off my face, the more the ground bounces up and down.
My brain hates it!
I’ll be interested to hear what a neuro opthamologist thinks about all this craziness.
Heather
Let me know what you learn about that. When i was real bad i was putting my glasses on only when I really couldn’t see something and then taking them off the minute i was able to. Putting them on, taking them off, all day. Yep, it felt like an overload on my brain, too much to process.
you actually have so many vivid symptoms - you’d think somebody would be able to put it all together. Do you believe it’s BAM? Did you know that you can suffer temporary blindness with BAM?
Keep us posted, and enjoy reading the forum tonight, it’s been on the ugly side,
Julie
We all are suffering in various degrees, the likes of which we all have probably never known.
I believe the power of people in a group can offer a type of healing and support that one cannot afford,
no matter how much money they have.
You have to walk in another man’s shoes they say.
Well that is why we all are here, are we not?
Do we not know what it means to suffer?
To be scared?
To wonder if we have lost the only thing we ever knew to be true?
If some do not realize the potential for this powerful group support ,
perhaps they should resort to sticking their head in a toilet, and merely flush.
As to the BAM, ya know Jules even I am getting stumped.
And I’m no dummy.
My symptoms are so intertwined and overlapping, it’s hard to know what’s real.
But I tell ya, when I first got here I called up an RN who heads up a local vestib group.
She cringed when I told her about having to deal with new glasses.
She said, “You are not going to know what’s real.”
She’s right.
I cannot believe all the wild symps, and I never thought a person could be so tortured through their vision,
or what they put on their eyes. I WILL find the life lesson in this, for I know that nothing, and I mean nothing,
has ever happened to me without a reason.
One thing is true though, once the hormones dropped-- all hell broke loose.
I feel like I am living in a Steven King novel.
But, look at it this way, I met you right?
I think there is always something we can learn from others, and especially through their suffering.
We all may be different, but in the end . . .
We all are one.
Heather
Hi all, Heather I don’t where Glasses but should.
I went to an ophthalmologist the other day due to always seeing a circle on straining or coughing, they thought it might have been a retina problem, thankfully it wasn’t.
He said it’s something that I will have for the rest of my life.
Kind of like a stigmatism. Possibly coming from my brain.
My eyes have steadily become worse over this year, my left eye is always blurred, and I have reoccurring double vision, most of my vision problems come from my persistent aura (without infraction)
Meaning I have aura that never leaves and I haven’t had any brain bleeds or lesions.
Also when I scroll down on the computer, my eyes will jump uncontrollably bouncing upwards… Very unnerving.
I also hear the mddsers talk about their problems with glasses,but havent heard of any eways to make things better.
I sit at the computer with one eye shut sometimes. Hehe.
I’m sorry you having this happen.
jen
i never knew it was possible to suffer this much and live through it. Maybe that was naive, but it’s true.
And this group has been such an important part of my healing. Over the last few weeks I felt like I was being robbed of a major source of stability, and with this illness, stability is a scarce commodity. Good news is - he’s been flushed, permanently. So we had a couple of rocky weeks, and got through it, with a headache or two and at the very least, what those two weeks taught me is just how important you people are to me - the thought of losing this forum to felt devastating.
I hope we haven’t scared off any new members, or old ones. I’m not proud of some of my counter-attacks, but I was at wits end.
*“We are all different, but in the end, we are all one” * Does that include Rich?!
:shock:
— Begin quote from “Julie”
*“We are all different, but in the end, we are all one” * Does that include Rich?!
:shock:
— End quote
LOL actually, yeah.
He’s just a little more different than others.
Suffering can bring people together in subtle, yet powerful ways.
But I have no patience for those who purposely try and make those who are suffering, suffer more.
If I see someone like that, well, I get out the hatchet. :x
I dunno, it’s a shame he couldn’t see the value in the people here.
Especially as scared as he really was, on the inside.
Heather
Group Hug !!! 
Here’s to us - its all good!!! We’re gonna make it. I just know it. :lol:
oooh! Dizzy I felt that all the way here in oz.
I love people that give big hugs like that.
thanks.
jen
Sorry i wasn’t here for the hug - we’ll have to do it again sometime
Rich will not do well with this illness and he needed support at least as much as anybody else. but there’s something seriously wrong with the way he’s wired and he wouldn’t accept it.
I’m a compassionate person, but, in the words of Paul Simon, I’m no “human trampoline”
Heather,
I know I am joining this thread late, but I do have vision problems agrevated by my glasses. On my bad days, my nystagmus, (bouncing of the eyes) is better if I take my glasses off. The medication I take also effects my vision: I have to take them off to see things up close, and things at a distance are slightly fuzzy.
Brian,
How do you know you have nystagmus?
What does it feel like?
Heather
— Begin quote from “Julie”
Rich will not do well with this illness and he needed support at least as much as anybody else.
— End quote
Yeah well I thought I could handle anything alone. WRONG.
Not this.
I totally wasted my time seeing the Neuro opth, Julie.
Heather
that’s a good song for all of us , “human trampoline”
jen
— Begin quote from “Heather”
Brian,
How do you know you have nystagmus?
What does it feel like?
Heather
— End quote
Nystagmus, a fluttering of the eyes. Normally the eyes use the vestibular system to help them adjust to the normal head movements associated with things such as nodding, shaking, or even the bouncing that occurs when you walk. When your vestibular system starts to send faulty info to your eyes they adjust incorrectly, then relizing they adjusted wrong, they try to pop back to where they think they are supposed to be, only to start the cylcle over again. You end up with what looks like the world bouncing up and down or left and right with everything blurred.
If you have ever experienced this you would know. I have been able to make my eyes do this since I was a kid and now I know why my eyes do it. As a result though, I am able to deal with it much bettter than most people, at least I tell myself that I can. 8)