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To those who are cured

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GrandPrixNate

To those who are cured

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Apr 20 05 7:45 PM

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I'm curious to hear from people who's visual snow went away. What were the changes that caused it to go away? Did it just happen randomly, or was it tied with a reduce in stress, change in weather, stress, jobe etc...

I'm just wondering how much hope there is for it to go away if I take some time for R&R.

Nate

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anna

Re: To those who are cured

#1

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Apr 20 05 8:36 PM

I had this eight years ago and it did go away. I was out of work for 3 months (maybe taking a break helped me recover). It semed like I improved more rapidly after taking prednisone but it is possible that I would have improved on my own. I did change my work schedule when I went back (no more 12 hour days).

This time around- I took prednisone, started improving, jumped right back into work, eating whatever is convenient and not getting enough sleep. I feel like I'm getting worse- so I'm working on taking better care of myself.

My advice: exercise, do things that make you happy, drink plenty of fluids, sleep 8 hrs a night- this can go away!!!

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GrandPrixNate

Cured

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Apr 20 05 10:13 PM

When you say it went away, did it go totally away?

Or did it just go away partially and you not notice/ignore the rest.

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Julesjubie

Re: Cured

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Posts: 77

Apr 20 05 10:28 PM

Hi there,

I am one of the few on this board who have noticed a huge improvement in my vision problems since the onset about a year ago. I still have VS, however it is now so slight that it doesn't bother me as it once did. What did I change - my stress is a lot less, my eating habits (hydrated myself), started exercizing and making sure I get enough sleep.

I don't believe that I am just ignoring it. I do believe that there is something else going on with us that the doctors just don't quite understand yet how to cure.

I will say this, on a scale of 1 - 10, a year ago my symptoms were an 11. Now I would say they are about a 1 - 2. The interesting thing is that I use to exercize at night and since I've switched to mornings before work, those days I am generally not even bothered with VS.

My best advice is to try to get on with life. Don't give up looking for answers, but focus on other things in the mean time. This is something that you may have to live with for a very long time and maybe it will just vanish one day (not unheard of on this board). I worried and fretted about this for almost a year and I finally came to terms that I don't want to spend another year living in fear.

I truely have never been happier in my life. VS has made me realize that life is full of all kinds of crap and yes VS really sucks, but it can be a heck of a lot worse. I really appreciate the simple things in life.

At least there is hope.

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GrandPrixNate

Cured2

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Apr 21 05 1:01 AM

Yeah I notice day to day there is a huge difference. But its like looking through dirty glasses every day. I've always wanted to fly airplanes, but have noticed that even driving I get fatigued much much much quicker then I used to. I also really want to see how nice the blue sky can look. it used to be sooo nice and solid blue. I just don't feel with it at all. Maybe its time to change majors. All my goals have seemed to have shifted.

Anyway thanks for the input.

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anna

Re: Cured2

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Apr 21 05 10:28 AM

My constant visual snow really did go away completely for eight years!

I would occasionally see "stars" or visual snow- but not for long and sitting down for a few minutes with my head between my knees would make it go away. I work up to 13 hours a day standing on my feet, with few breaks. I think those few episodes were from a combination of blood pooling in my extremities and my tendency to have low blood pressure.

I do not think that people just "adjust" to these visual symptoms. I think that whatever caused them for me the first time improved but has now returned.

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Unregistered(d)

flying

#6

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Apr 21 05 11:28 AM

GrandPrixNate

If you want to be a pilot go for it. I have visual snow and all the sympomes but that doesnt stop me. Im working on getting my private license and can fly just as good as the day VS hit me. Don't let this crap ruin your dreams.

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GrandPrixNate

Flying

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Apr 21 05 7:03 PM

Where are you located? Just curious. I've always wanted to fly, ironically I'm an engineering student though, first thing is first right.

Nate

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SwedeP

Re: Cured

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Apr 22 05 12:23 AM

Anna and JulesJubie:

I'm curious if either or both of you had, what's called, full blown VS or just snow. That is, it seems that people with the full blown version have TV static or snow, persistent afterimages or trails, flashes and phosphenes, lava lamp paterns with their eyes closed, etc. I'm just curious to know which version of this stuff you guys had.

Thanks very much for your comments.

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Julesjubie

Re: Cured

#9

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Posts: 77

Apr 22 05 1:10 AM

Swede

I'd say I had the full blown version. Halo's, starbursts, after images, trails, vs and severe shimmering (especially with patterned objects). When it first started I couldn't go shopping, drive at night, read, watch TV or work on the computer. I no longer have halos, starburst, after images or trails. I still have slight vs and some shimmering (the shimmering bothers me more than the vs.) The improvement in symptoms was very gradual, but eventually most of them have vanished.

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shaunlevett

Re: Cured

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Apr 22 05 3:22 PM

Its quite encouraging to know that some peoples vs has gone. Unfortunately mine seems to go wose every few weeks. The snow is now more like a fine mist because there is so much of it. Its been about a year and a half now, and I have become so miserable. I used to be happy and annoying to most people but now even speaking feels really odd so I dont speak to much now. The snow never used to be very visible in the day, but now looking up to the sky shows hundreds of 'starbursts'. The worst thing is the ever increasing odd feeling which comes with the snow. I'll basically be driving somewhere in my car, and when I get to my destination I just seem to 'be there' and it seems like hours ago or even a dream that I even drove there. This has recently started to get even worse. The days go by, and I can still remember everything, but it feels like a lot longer ago. Its as though I'm living in the exact moment I'm doing anything, but as soon as I have done it, it will feel like a distant memory or dream. Anyway thats the main concern for me. It feels like I'm actually going insane. Even looking down at my arms or legs as I walk, it feels like they are not my limbs, obviously this becomes very odd when driving. I can still drive fine, but its like I'm just along for the ride as opposed to actually driving..........

But still if some people are better then that helps, but at the moment it just keeps increasing every few weeks / month.

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anna

Re: Cured

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Apr 22 05 11:17 PM

SwedeP

My vision seems to change according to the lighting, how tired I am and what I'm looking at. Sometimes everything is shimmery as if I am looking over a fire. Sometimes everything that has a straight edge vibrates. I often see "shadows" dancing over everything. Occasionally I'll look at a blank wall and there will be diagonal shadows that look like a giant venetian blind is creating them. And I have the "snow and static" that is worse in low light. I had after images initially (mainly from the back and white tile in my bathroom- a quick glance would project that image over top of everything) but they went away after taking the prednisone. I don't remember having after-images the first time I had this.

Shaunlevett

Sorry to hear your symptoms are getting worse. The first time I experienced this I can remember looking down at my legs and wondering if I could get them to carry me from the car to the house- they did not seem to be mine. While my vision has not cleared completely yet (this time around), the detached and "time warp" feelings disappeared pretty quickly after taking prednisone. I still think this may be an autoimmune problem that prednisone could help. I'll let everyone know what the rheumatologist says when I go in May. Hang in there.

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GrandPrixNate

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#12

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Apr 23 05 2:23 AM

Yeah I know exactly what the feeling is, its like being a 3rd person watching yourself. Everything feels in slow motion. My mind used to think ahead many steps in a day and sometimes a week, but now I'm just amazed at how the time flys I'm trapped in the moment.

It kind of reminds me of the movie Office Space or American Beauty. I just don't really seem to worry or care much about anything except returning to normal. Its not way to go through life. but thats how things are for now. So make the best of it, thats what I'm trying to do.

Nate

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LarryC0000

Re: Reply

#13

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Posts: 460

Apr 27 05 4:09 PM

Another person who's symptoms have gone on this board:

p210.ezboard.com/fthosewi...1030.topic

Also,
Shaunlevett and Nate,
I have posted an article that talks about the disassociated feelings/derealization as a symptom related to migraine.

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Unregistered(d)

Re: Reply

#14

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Apr 27 05 6:31 PM

I can relate very much to the feeling of not being there. Obviously VS either directly or indirectly affects memory and perception of self.

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jabrams8

Re: Reply

#15

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Posts: 22

Apr 27 05 6:46 PM

thanks to everything i've read and experienced personally over the last three years i no longer think we're going crazy. supposedly depersonalization is associated with a lot of mental/emotional processes (like migraine) that aren't on par with schizophrenia or psychosis. it seems like most of the posts here are more rational than a lot of the things i run across on any given day (maybe we are all going crazy in the same way?). feeling like i was going crazy was terrifying, and i'm sure didn't help. anyway, thats my 2 cents.

larry, what was that post called?

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LarryC0000

Re: Reply

#16

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Apr 27 05 7:18 PM

jabrams,

I have posted that article in a few places including the one regarding medications and their affects. I originally posted it in the thread depersonalization/derealization. It talks about migraines causing the problem in many cases

Lysergium,

The VS probably does not cause the derealization. Whatever is causing the vs may also be causing the derealization. Take a look at the article I mentioned and have been pointing out to people with that particular symptom.

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zenumasu

dream time

#17

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Posts: 2

Mar 13 13 12:59 AM

shaunlevett wrote:
Its quite encouraging to know that some peoples vs has gone. Unfortunately mine seems to go wose every few weeks. The snow is now more like a fine mist because there is so much of it. Its been about a year and a half now, and I have become so miserable. I used to be happy and annoying to most people but now even speaking feels really odd so I dont speak to much now. The snow never used to be very visible in the day, but now looking up to the sky shows hundreds of 'starbursts'. The worst thing is the ever increasing odd feeling which comes with the snow. I'll basically be driving somewhere in my car, and when I get to my destination I just seem to 'be there' and it seems like hours ago or even a dream that I even drove there. This has recently started to get even worse. The days go by, and I can still remember everything, but it feels like a lot longer ago. Its as though I'm living in the exact moment I'm doing anything, but as soon as I have done it, it will feel like a distant memory or dream. Anyway thats the main concern for me. It feels like I'm actually going insane. Even looking down at my arms or legs as I walk, it feels like they are not my limbs, obviously this becomes very odd when driving. I can still drive fine, but its like I'm just along for the ride as opposed to actually driving..........

But still if some people are better then that helps, but at the moment it just keeps increasing every few weeks / month.

Sounds like depersonalization. Join the club buddy! lol

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