Double Vision

[Dorothea]

:blink::blink: Has anyone had problems with double vision? I've had four episodes in the last month. It lasts between ten to twenty minutes. It feels strange, luckily it has not happened while driving! Please let me know if anyone has had this same issue. Also I started taking Methotrexate(15 mg.) on November 27. (once a week) My double vision started on November 12th.

[annekat]

I have had some double vision. If I close one eye it goes away and I see normally out of either eye alone. It seems to happen when I'm tired or have had too much coffee. It doesn't just last for 20 minutes and then stop. It feels like the eye muscles have gotten weak, the ones that allow the two eyes to work together. Sometimes if I try hard I can bring the two images back together. It happens more with distant images than up close, for example, it never happens with the computer screen. I know I'm way overdue for a eye exam and prescription change for my glasses, regardless of having Wegs. But I know I should have it checked out and just haven't gotten around to it. It's been going on for at least a year and I've gotten used to it. I have been taking methotrexate for about a year and a half but don't know whether there could be any connection.

[Dorothea]

annekat, thanks for responding so quick to my question. How much methotrexate do you take? and do you have any side affects from it?

[annekat]

I am on 15mg/wk, not a very high dose. I was on 10mg. for a few months and had a flare, so it was raised. I just have a little nausea and fatigue, not much really, I split the dose and take 4 pills at night before bed and 2 the next day. If I get up in the middle of the night, I feel a little woozy. Before the MTX I was on CTX for about 8 months. I'm now on 8-10mg. prednisone a day, trying to taper down to 5mg.

[SpaceflightAddict]

I had some episodes of double vision just before my diagnosis, and for about two weeks after.

It was caused by the damage and related swelling in the left side of my face, and as the swelling went down, my double vision went away.

Looking through your posts, it looks to me like you have sinus issues on the left side. Have you had any appointments with an ENT to take a look up your nose? Once all the funky stuff was cleared from my sinuses, and I was irrigating them regularly, my vision issues cleared up.

How are your sinuses acting now? Are you having any nosebleeds or trouble breathing through your nose?

[annekat]

Andy, I know your reply was for Dorothea, but I'm taking note of your suggestion... I get lazy about the sinus rinses and tend to do them only once a day, though multiple times in that session. Perhaps there is still stuff in there that could cause problems with my vision, which had never occurred to me. I haven't been to my ENT in a long time, but if I did, I imagine he'd be in there in a flash, pulling stuff out....

[SpaceflightAddict]

Andy, I know your reply was for Dorothea, but I'm taking note of your suggestion... I get lazy about the sinus rinses and tend to do them only once a day, though multiple times in that session. Perhaps there is still stuff in there that could cause problems with my vision, which had never occurred to me. I haven't been to my ENT in a long time, but if I did, I imagine he'd be in there in a flash, pulling stuff out....

I got negligent in my rinsing regiment for one day a few weeks ago... I went out of town for one day, and forgot my supplies. The next day I paid for that mistake in PAIN, and when I finally got home and did my rinse, some nice crusties came out the size of which I had not seen in over a month.

I think the dry air this winter is not helping any, but as long as I keep up on my nasal hygiene, the problems stay away.

[SpaceflightAddict]

One other thing came to mind while I was thinking about double vision...

When I was in the hospital and they were giving me opiate pain killers (oxycodone) double vision seemed happened to me a lot more than it did when not on them.

I stopped taking those as soon as I was discharged from the hospital, and the rate of occurrence seemed to go down overnight.

[crackers]

I had an episode of double vision 3 or 4 years ago which lasts for about 3 weeks.i saw the consultant at the eye hospital and he ran numerous tests but could not find any abnormalities.he told me he had seen a few Weggies with double vision and in his experience it would go as quickly as it came and sure enough he was right.he said it reoccur at some point but up to now it hasn't.
john.

[annekat]

I do feel that caffeine consumption may exacerbate my double vision. And I mainly mean coffee. I must have my large morning cup, but I feel that if I limit my intake later in the day, it helps the problem. I'm not sure about this, just a vague observation, could be something else entirely. Andy, interesting about the oxycodone. It shows that some drugs or other could be a cause. And caffeine is a drug.

[Dirty Don]

If you're drinking that much of the brown elixir, then you may need rehab!!!!!!!!!! Drugs are good, especially caffeine! Reaching for my..................................

[annekat]

If you're drinking that much of the brown elixir, then you may need rehab!!!!!!!!!! Drugs are good, especially caffeine! Reaching for my.................................. Don, I seriously doubt I drink anywhere near as much coffee as you do, though I do consider it an elixir, especially just after waking up. But we are all different, and if it doesn't affect you negatively, you should drink it to your heart's content! I can sometimes handle a cup later in the day and sometimes not. Sometimes I will drink one and wish I hadn't. So, no, I don't need rehab.... nor do you. There are some members of my family who probably drink as much of it as you do, and having one of them visit would be a time I might drink too much and regret it. BTW, the "large cup" I drink in the AM is 24oz.! That should hold me for the day. Sometimes I revise it down to 16oz., but then am more likely to have a little more later. Hail the Brown Elixir!

[SpaceflightAddict]

My day does not start until i've downed at least four cups of coffee. It also makes all the pills taste better.

[annekat]

My day does not start until i've downed at least four cups of coffee. It also makes all the pills taste better. So for some of us, coffee is needed to get our day started, and for others, it is an all day pleasure with no ill effects. I thoroughly enjoy my large cup in the morning; it may be the highlight of my day! And Don, I never meant to imply that drugs weren't good; we Weggies know as well as anyone that they are. They do have side effects, more for some than others. Even coffee.

[SpaceflightAddict]

So for some of us, coffee is needed to get our day started, and for others, it is an all day pleasure with no ill effects. I thoroughly enjoy my large cup in the morning; it may be the highlight of my day! And Don, I never meant to imply that drugs weren't good; we Weggies know as well as anyone that they are. They do have side effects, more for some than others. Even coffee.

For some reason this thread reminds me of when I was getting a pulse dose of methylprednisolone in the hospital (1000 mg/day for three days). The doc wanted me to cut back on the coffee for a few days because he "was worried that I would start seeing things crawling under my skin."

LOL. I had way too much fun in the hospital than I should have.

The cocktail of drugs I was on had me high as a kite. The first day of the pulse dose, I got my first deep sinus cleaning from the ENT. I practically had an orgasm when he pulled out the first huge chunk of snot. I ended up begging him for an hour to keep digging until there was nothing left. He was laughing the whole time, he had never seen anyone enjoy a sinus cleaning quite that much. Oh man that was such a fun day.

[annekat]

LOL, Andy!

[Wegetarian]

I developed double vision, it hasn't bothered me though - I only notice it when I try to read a bedtime story for my kids and read in a bit of an uncomfortable position or during eye-exams. My vision also got worse, and I got cataracts and bought my first pair of glasses. The assumption was that my eyesight would keep deteriorating and I'd need new glasses or an operation. To my surprise my eyesight has gotten better. The opthamologist thought that the changes to my eyesight could be due to the eyeballs getting swollen by the pred, dunno. Anyway I hope he is right and that my sight will keep improving when/if I'm off the pred.

Currently on 25mg MTX / week, 15mg pred / day.

[carriej22]

I had a lot of eye issues caused from prednisone. Prednisone causes the pressure in your eyes to go up; which makes you have double vision, halos around lights and all kinds of fun stuff. Luckily now that I'm almost off pred, mine has improved.. Still not perfect though.

[annekat]

Thanks, Wedgie and Carrie, for getting us back on topic. I was about to Putin us! Interesting about the pred.... now why couldn't my doc, who I'm sure prescribes pred to many patients, just have told me that when I asked about the double vision? He just told me to get an eye exam, which I know I need, but c'mon.... how about a little more responsiveness when you only see someone for 10 minutes every 2 months and they have to live with it 24/7? Sheesh, I couldn't even get him to give me the name of a good ophthalmologist.

Back to you, Dorothea, it seems that double vision is common among us and may be just part of the deal, but it could also be caused by something serious, so if you are truly worried and bothered by it a lot, you should get it checked out by someone who knows Wegs and eyes. I know there are forum members who have had serious eye issues, and it would be good to hear from some of them. You could also do some searches of the archives regarding eyes.

[windchime]

I had a lot of eye issues caused from prednisone. Prednisone causes the pressure in your eyes to go up; which makes you have double vision, halos around lights and all kinds of fun stuff. Luckily now that I'm almost off pred, mine has improved.. Still not perfect though.

Carrie thanks for this information. I was driving the other night and the halos were really bad and I was wondering why. Now I have an answer. I had just been to the eye doc last week also. So I was perplexed.

[annekat]

My worst thing with driving is when the white or yellow line down the middle of the road splits in two. Sometimes I close one eye and that takes care of it. This doesn't happen all the time; more common when eyes are tired or I've had too much coffee. But definitely more of a problem at night, and then I guess I get halos from lights, too.

[Wegetarian]

now why couldn't my doc, who I'm sure prescribes pred to many patients, just have told me that when I asked about the double vision? He just told me to get an eye exam

My guess would be that he just didn't know. Its not really something I stumbled upon when I was reading a ton about Weg's. The articles often refer to some eye issues, like the protruding eye thing - but they don't say that a ton of people get eye issues from pred. Come to think of it, I need to link an interesting article about Pred and the mind - another issue the docs don't really talk about a lot (again I think the doc's just don't know that much about it, just that it can cause some issues).

Back to the eyes again, I too had more issues seeing in the dark. Especially driving in the dark (was difficult to read the signs) and for instance to see buss numbers which are done with LED-lights (seemed blurry to me). Both things are not much of an issue to me anymore, and I haven't used the glasses I bought almost at all.

[Dorothea]

thank you very much for your input annekat! (and everyone else too!):thumbup: I'am so glad to have found you guys! It's nice to know I have somewhere to go (support) and talk to people that understand wegs. Sometimes I feel alone.and then I come here and feel comfort!!! Thanks again everybody!!!!:hug3:

[mishb]

My worst thing with driving is when the white or yellow line down the middle of the road splits in two. Sometimes I close one eye and that takes care of it.

As long as you don't close both eyes Anne. :flapper:
I'm pretty sure that would cause a little more trouble than double vision.

[annekat]

As long as you don't close both eyes Anne. :flapper:
I'm pretty sure that would cause a little more trouble than double vision.LOL, Michelle! I even got ahold of an eye patch to try out. But it's too much trouble under my glasses, and uncomfortable. I think I will try drinking less coffee today and see if that helps. And will try to eat less chocolate, which also contributes to the problem, somehow, I think... although it may be the sugar more than the chocolate itself. Anything that causes a boost in energy followed by a drop seems to do it. These are just theories, though. And it is so hard to avoid these things at this time of year when people are constantly pushing them at me! Takes a lot of will power.

[1mzorro]

I've also experienced double vision and now have it in control. Turns out is was a flare up in the making. It started out with eyes being very tired all the time and continued for two months. I figured it would go away but didn't. Eventually I started developing a lump below my eye (didn't hurt but you could see it puffy), figured it was sinus related as all my Wegeners's symptoms are with my sinus. Then I had headaches that came very frequent along with double vision. I could hard drive and eventually stopped driving, I could not focus either. I felt it was serious enough and my rheumatologist also felt I needed to see my eye specialist. Turns out my optic nerves were very swollen. That was causing the headaches. The bump I developed is a psuedotumor, I guess not many people get this but it comes with guess who go tit ;). I was put on prednisone. After 3 days the headaches went away and the optic nerves are normal after 2 weeks. I have been on high dosages (60mg) of prednisone for about 2 months now and the swelling also started to go down in my eye. I am currently on MTX and Humira the the last 5 months. I will be switching to Rituxin in January, can't wait.
Hopefully you don't go through the same things I went through but I felt I should post my experience just in case and no one waits as long as I did to see an eye specialist.

[mishb]

Thanks for sharing, 1mzorro, and welcome to the forum.

I hope Dorothea's double vision is not caused by this.