[sdavis87]

hello everyone, i am new here and i am having some problems with my vision and headaches. it's like a small circle that i can't see through that grows out the entire vision area until it is no lnoger visible and when it happens i get a horible pain in my head. my doctor had thought i had an anyurism but a ct showed nothing. it is happening almost everyday now and it is quite bothersome let alone scary, i am nervous to drive sometimes. it happened twicw in one day and i couldn't see at all when it happened twice like the second one was stronger maybe. i don't know. i am hoping someone else knows what this is since i have lost hope in my doctor. i have been going to her for 5 years and the other day she told me she felt like a failure since my sle has been continuously active since i have been diagnosed. any help is appreciated, thank you.
-lost and out of place

 

[rwb200]

Hello Sorry to hear about your problems.
I can not say what it is but would suggest you have a good eye doctor take a look at you right away.

When you go take a list of all medications you are on and write down as much information between now and when it happens as you can.

What time of day did it happen, what were you doing, what were the conditions like at the time. ( Inside with normal light, outside strong sun, dark low light)
Write down times you take your medications and what ones you took.
If you have a regular schedule of certain drugs in morning and certain ones at another time you can probably list moring dose once and any others once and then just refer to morning dose and so on.

With vision problems it is hard to say. Some medications can effect vision.
Reactions to some medications can effect vision.
And the eyes can develop conditions of there own.

Only a good eye doctor can check and find many of these. A complete list of as much information as possible maybe of a help.
You may have more then they need and they may skip over or disregaurd some but since we are not medical professionals we can not determine what piece of information is going to help them help us.

I have never had a doctor tell me I had way to much information I have had them hunt and search for the key piece many times.
I'm not able to determine what the key will be so I give them as much as possible.

 

[tbunny1]

No need to feel lost or out of place here - welcome to lupieland! :hehe:

I am not really sure what you are trying to describe when you refer to your vision loss -

"it's like a small circle that i can't see through that grows out the entire vision area until it is no lnoger visible and when it happens i get a horible pain in my head"

Are you experiencing central vision loss? Are saying you are developing a blind spot in your sight that grows bigger? Do you completly lose all vision in either one of your eyes? How long does it last when it does happen, and does your vision come back?

You said your doctor did not feel comfortable trying to diagnose this. Have you tried going to an eye doctor? An opthomologist is a medical doctor that specializes in diseases of the eye. Make sure you don't go to an optician, who is just trained to fit you with glasses.

I developed a "blindspot" several years ago that turned out to be optic nueritis. Your eyesight is not anything to mess around with. It may be time for you to go elsewhere to get this diagnosed and treated as soon as possible.

Be well .... Tracy

 

[SharonMV]

I've had very similar experiences - it was an ocular migraine. Sometimes I just get the visual disturbances without the headache. I got the whole in the center of my field of vision at first , but then also had some zig-zag lines around it. I realized it wasn't a vision problem because when I closed my eyes, the patterns remained. Best to go to an eye doctor & have it checked out.

Sharon

 

[Katharine]

Hello there and welcome!

Please don't feel out of place. There is room for everyone here

I can understand why you find that particular symptom worrying. I'm afraid I don't have a clue what it might be but definitely agree that you should make an appointment with an eye doctor as soon as you can. And, of course, take along those lists of meds and anything else relevant.

When you mention your doctor, is that your rheumatologist? It sounds like it is definitely time to look for a second opinion. 5 years is a long time to be having no let up in symptoms. There is a section here on the boards where you can ask for any recommendations for a good doc in your area. Hopefully if your doc feels she has failed you, she can also support you in seeking help elsewhere.

How does your lupus affect you other than the eye problems?

sending lots of hugs,
:hug:
Katharine

 

[Meryl2]

Hi
I also have this, it started long before my SLE, I would be ok one minute and then I would get one sudden sharp pain at the side of my head and the vision disturbances would start, if I looked at the clock I would not be able to see the time as the numbers would be blocked out, also the only way I could describe the vision disturbance is if you look down the road on a very hot day and everything seems to be shimmering off the road, my eyes are just like that. It usually takes half an hour to an hour to subside.
When I asked my GP about it he said it was a Flash Migraine. I only get the one sharp pain, no headache.


Good Luck

Meryl

 

[Clare.T]

Welcome to the forum !

I agree that you need to see an eye specialist. Why didn't she refer you.

I have had ocular migraines before - they were like the shimmery effect, northern lights sort of thing, already mentioned. Never any headache, just a rather sick feeling.

Maybe you need another doctor too if at all possible since it is not emotionally healthy to have a doctor talking that way about failure and all, in fact as I write that, I suddenly feel mad with her. It's not about her, it's about you. The best doctors make you feel better about your situation even when nothing further can be done. They are comforting all the same.

If you would like to talk about it, how lupus affects you and what medicines you are on and have tried, you are most welcome.


There's no reason to feel out of place - I hope you'll find the forum very helpful

Hugs
Clare
​

 

[BigSis]

I've had this too.
It was like my vision was broken if you know what I mean. Or like looking through an area of distorted glass. They come on for no reason, the shimmery area moves slowly to the peripheral vision and lasts no more than 15 minutes.
Was diagnosed as ocular migraine though I had no headache then. ( I have real humdingers now:worried: )
I would get checked though if its happening frequently. I think they are associated more with cerebral bloodflow than the actual eye.
First time it happened to me I was freaked by it.

 

[sdavis87]

i thank everyone so much for there postings. i truly have no idea what to do about anything anymore. i know there are more people with worse situations then myself but it is really frustrating when your own doctor tells you she feels like a failure because she can't get my lupus under control. it really makes me feel like a lost cause. i am trying hard to stay positive but it seems like a am losing the war. maybe this website will help. thank you all again for listening.

 

[Katharine]

Hi again,

Let me just say that I am sure you are not a lost cause!! We can easily feel that way when we see no end to feeling bad and that's bad enough when your doctor is being confident and is reassuring you that it is just a case of time before getting the meds right.

I am sure that there are other treatment options out there for you and I think it sounds like it's high time you went to see another doctor.

Please keep cheerful,
Katharine

 

[halfpintfl]

Hi sdavis, just wanted to say that it could also be "macular degeneration"
So that is just another reason to get,to the eye dr. as soon as possible.
You don't want an eye dr. that checkes your vision, you need an eye dr. that checks for diseases of the eye. If you are on Plaquinel, we are supposed to get checked every 1-2 yrs. make an appt, and let us know.

 

[Raglet]

It does sound like migraine - have you been tested for APS ? I have APS, and my migraines are much better controlled now my APS is being adequately treated. Ask your rheumie if you should be tested for APS (they tend to respond better to being asked then told).

hope you get this resolved soon. The other thing you could do is ask to be referred to a neurologist as they can be really helpful with headache.

raglet

 

[rwb200]

Hello SDAVIS
It can be very frustrating trying to get the medical care that is needed.
For years my wife went to first one doctor and then the other, her medication list grew and grew and she had little or no improvment.

We were very frustrated with the system and had about given up.
Then a odd twist of fate showed us a ne wdoctor in our area that has now been treating her for about seven years.
We have had small ups and downs in that time but no real big problems like we were seeing before.

We wish now that we had looked more and found this doctor a long time before we did.
If we had maybe we would not have had as many problems as we did before.

If you are not getting the care you deserve and are getting frustrated with what is going on look for a new source of care.