AshleyPooh Posted November 10, 2013 Report Share Posted November 10, 2013 So I've been talking to few people with NCS, and one thing I've noticed some people complaining about are visual disturbances. I mentioned it on a ncs group and someone came back describing to me the exact symptoms I am experiencing!Basically , we are getting a 'funhouse mirror' type feeling of tunnel vision, disconnect from the world around us type stuff. It makes face to face conversations extremely uncomfortable, and my eyes are constantly feeling uncomfortable for no reason. At work, it sort of makes me feel like I'm floating around on my own, and it's hard to focus.Now I am on Midodrine to keep my bp up, and so far it's doing a good job, but whatever is going on visually is NOT being fixed by this medicine. I've seen an eye doctor not long ago, and they said my eyes were fine, and that if i have issues, it's something 'affecting' my eyes, not any damage or disease of the eye itself.I am beginning to suspect this is a salt issue. I have heard that aldosterone, a hormone that regulates electrolytes and stuff, is greatly affected by salt. I also know that aldosterone affects your eyes in a strong way, especially the little muscles in them.Basically I want to hear feedback from folks who feel like they experience this, or have had this problem in the past.Also, to anyone on Florinef: Did you experience eye issues before taking Florinef? Did the Florinef help your eye problems any?Also, I want to ask my cardiologist about this, but I'm afraid she won't know what I'm talking about :/ Quote Link to comment Share on other sites More sharing options...
artluvr09 Posted November 10, 2013 Report Share Posted November 10, 2013 A lot of times I feel like my eyes are strained. If I look at the sun and look away I see spots for a while. but I think that part is for everyone. The weird thing with me is that Its really uncomfortable for me is when I am reading books and there are pages with red my eyes go weird like lightning strikes bbounce off the red. sometimes bright bold blue does too. but not as much as red. I also feel disoriented a lot and yesterday I was on the computer and my eyes were getting blurry like it felt l ike the blur was fading inward and getting more blurry but when I refocused I felt the blur go outward and gone. does that make sense? sometimes I see little blue floaters like the color of lightning. and one time during the heatwave over the summer I was at boarding school and we had lunch outside in 90 degree weather when I had a doctors note that I cant be outside when the heat index is 90 or above and they did not listen. so we were heading down to my cottage after lunch and we got insdie and I started heading upstairs andi started seeing white and gray swirls and had to sit down. and I get these weird auroras with my migraines. My migraines don't start off with headches. first my right hand goes numb then my whole arm then the right side of my face and the right side of my tongue then I start getting disoriented and my speech gets all slurred and doesn't make sense and my right hand turned all purple one time. one spell I had I was trying to check my blood sugar because at the time I had hypoglycemia my one medicine caused me to have hypoglycemia and I wnet to check my blood sugar and I couldn't get the strip in the machine or t he needle into the pen because my hand wouldn't work and my mind wasn't working. then since I couldn't do that my staff brought me juice and I didn't realize I was holding it and dropped it. then I start seeing lightning strikes and I felt like passing out then I got a really bad headache. but yes getting back on track I do get visual disturbances as well. Quote Link to comment Share on other sites More sharing options...
badhbt Posted November 11, 2013 Report Share Posted November 11, 2013 Visual disturbances has been one of my constant symptoms. Funhouse like is a good analogy. I almost feel like I see 2D instead of 3D which makes it like living in a bad movie and just a constant reminder of my illness.I have ghosting, wild patterns can look like they are moving, and bright colors are obnoxious and my contrast has been off.I went to Vision therapy for 3 months, and it really didn't help. It just made me feel like I was doing something.I went gluten free 2 weeks ago and I have noticed a big improvement in my vision. I will let you know if it helps even more. Quote Link to comment Share on other sites More sharing options...
Hope Posted November 11, 2013 Report Share Posted November 11, 2013 Yes, Yes, Yes! And it's frustrating! Sometimes it's just vertigo getting me out of wack, but that doesn't account for the floaters, and spots, and the "ghosting", and seeing things out of the corner of my eye (usually black spots, NOT like hallucinations). My depth perception is way out of wack and my glasses do not fix it. Driving, even when I feel up to it, has been out of the question because of my vision. Quote Link to comment Share on other sites More sharing options...
Hope Posted November 11, 2013 Report Share Posted November 11, 2013 I just want add to my last comment, that when I am having a really good-feel good day, my vision is great! That's one of the things I enjoy on those days. I go around telling my family "Wow, I can see so good today!" Quote Link to comment Share on other sites More sharing options...
Xhale1991 Posted November 11, 2013 Report Share Posted November 11, 2013 Big time.My eyes have been horribly lately. My vision is has degraded greatly over the last few months, and they are constantly bloodshot. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted November 12, 2013 Author Report Share Posted November 12, 2013 how interesting that so many of us seem to have problems that are so similar! I really think I will ask my cardiologist about this and see what she thinks, b/c like some of you said, driving is a serious issue with this problem. Can't see a car coming at you well when you are zoned out like crazy...I will definitely let you all know what my doc thinks Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted November 12, 2013 Report Share Posted November 12, 2013 Ashley, I didn't realize that aldosterone affects your eyes...interesting! Visual disturbance Is one of the things that I had documented that Florinef helped me with. {I don't fully trust my memory, so I looked back } I stopped driving for the first 9 mos when I got sick as it just wasn't safe (partly due to vision; partly due to an inability to process info/react quickly; and partly because I was just too ill to be out). After 4 full weeks of Florinef, I felt comfortable driving. The visual disturbances were greatly reduced. I had other visual issues as well, but the biggest issue for me was the floaters. I would constantly think I saw bugs crawling or flying, especially peripherally. Badhbt, I'm so tempted to try gluten free, but still haven't made the leap. Glad you are seeing some benefits - please keep us posted on how it's going for you Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted November 13, 2013 Author Report Share Posted November 13, 2013 you know what's weird? is that ever since this nonsense developed, i swear i see crap out of the corners of my eyes. like seeing stuff move then realizing that there is nothing there. it's freaky! I have seen some folks speculate that vision problems could be cluster headaches , so between that and the salt issue, I know what to talk to my doc about. I really want to try florinef. i'm going to ask her about it! Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted November 14, 2013 Report Share Posted November 14, 2013 Ashley,I also think I see shadowy things moving in my periphery but when I turn to look nothing is there. It's very startling. There are all those other oddities as well. So frustrating I know and problematic especially when trying to drive. I hope you find something that helps. Maybe it will be florinef as AllAbout Peace has had such success with.Badhbt,That's great that going gluten free has helped improve your visual problems. I went gluten free about 5-6 months ago and have not realized any visual benefit from it but have realized significant GI benefits. I think it's definitely well worth trying gluten free for whatever benefits may be possibly achieved. Maybe someone else will have the same visual improvement as did you.Hope,My vision is also better on the generally less symptomatic dysautonomia days and I am so thankful for those days.AllAboutPeace,Thanks for sharing about how florinef has helped reduce your visual disturbances. It's something I hope to be able to try soon. I wonder if it helps because it results in fluid retention and potential improvement in cerebral perfusion which can be impacted in both a sitting and standing position. How wonderful that you have regained the ability to drive. I drive locally but not on freeways anymore as I no longer feel safe to myself or others. I'm hoping florinef may change that.Janet Quote Link to comment Share on other sites More sharing options...
Searching4answers Posted December 28, 2013 Report Share Posted December 28, 2013 I thought I was the only one who had weird visual disturbances so I never mentioned it to anyone! I see things move quickly in my periperial vision and I tiurn around and nothing is there! So strange. Glad to know I'm not alone but it does scare me to drive. I am extremely cautious. I have been taking a salt tablet daily for the past 5 months but after reading the comments, I may discontinue them.I am considering the Primal Diet but it seems so extreme. Has anyone tried it successfully?Searching4answers Quote Link to comment Share on other sites More sharing options...
Relax86 Posted December 29, 2013 Report Share Posted December 29, 2013 During the worst flare in 2012 I had significantly blurred vision as well as a 60% reduction in my left eye. Eye Dr said his worry was that it was uncorrectable (assuming with glasses or contacts). Since then, my flare has improved and my vision as well. Also to note, I had low Aldosterone during my flare. My recent eye exam found a hole in my retina. I believe - not my Dr - that the significance of near sightedness I experienced during the flare was enough to tug on the retina. I also have B/L retinal thinning. I had to see a retinal specialist. He said my hole was in the wait and see phase. Fixing it is fairly easy with laser. He had no interest in discussing the dysautonomia link and found the two to be unremarkable. While he's probably fine to monitor the hole (I go back in 3 months); I doubt I'll let him treat it, if necessary. I have to use Drs that at least pretend to listen to me.Anyway, the point to my post is: for me visual disruption is real with dysaut...my pupil dilation and constriction suffers. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted December 29, 2013 Report Share Posted December 29, 2013 Dx in nov with pots, appt mon with eye doc. Blurry vision comes and goes. Hope to get answers Quote Link to comment Share on other sites More sharing options...
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