aaronh819 Posted August 17, 2018 Report Share Posted August 17, 2018 have been having such a terrible time for so long with eye pain and terrible visual disturbances. Been to multiple specialists neurologist many eye specialist neuro opthalmologist had an mri ct all with no avail. I definitely thank the Lord they haven’t found anything wrong in my brain or anything like that I am just beyond scared to death things just being so bad with no help whatsoever. The last few months it’s became debilitating progressing so fast I have no idea what to do. The pain is unreal like someone is taking a torch to your eyes at times. My eyes have became red also all the time. I’ll try and describe the visual problems or at least what I can think of there’s so much. Terrible visual afterimages constantly seeing everything you look at repeatedly, seeing clear outlines of everything you look at whenever it’s bright, tons of floaters, white dots everywhere whenever looking at the sky or anything bright, flashes of light all the time from white to blue or black. Even when I close my eyes I always see blue light even when I’m a dark room with my eyes closed for hours I can’t ever get rid of this. I never heard of anyone seeing blue like this all the time with eyes closed. Also have an arc of light in the side of my right eye almost all the time, extremely bad light sensitivity, if I see any glare of light or head or taillights or anything it gets burned into my eyes for minutes. I cannot find help it is progressing so fast I’m beyond terrified. I can even look at my phone or anything and look around and see a black outline of whatever I was looking at for minutes. There is so much more going on with my vision and head pressure and so much more I could never list it all. I also have been having weird pains and feelings in my head muscle twitches almost nonstop and so much more. If anyone has experienced anything like this please help me. I have lost all faith in the medical field just keep getting put off months at a time. I Pray more than anything for healing. I would do anything work for free the rest of my life just to have my health back please my Lord. Please anyone that can help it would be greatly appreciated I’m beyond desperate. Thank you so much and God bless Quote Link to comment Share on other sites More sharing options...
sleepy_lady Posted August 17, 2018 Report Share Posted August 17, 2018 Does your vision look like this? Mine does, I was diagnosed simply with astigmatism, but who knows. Glasses help me a great deal, but I get the eye burning and red eyes, too. Although, not to the extent you are describing. Sometimes washing my face thoroughly prevents the burning, I'm not sure why. I also get head pressure, mostly at the back-left of my head. It's been that way for years now (Since I was 17 or 18, I'm 25 now.), so I'm used to it, but sometimes it does make me feel unnerved. I hope my message has been helpful in some way! Quote Link to comment Share on other sites More sharing options...
aaronh819 Posted August 17, 2018 Author Report Share Posted August 17, 2018 I have astigmatism too in one eye always wore contacts until the pain set in. It never did bother me until all this started going on. Nothing really like the picture. I get a lot of head pressure especially when standing or bending. So much going on it’s unreal. Would love to wake up and this all be a bad memory please Lord. Thank you for the reply Quote Link to comment Share on other sites More sharing options...
kafie Posted August 17, 2018 Report Share Posted August 17, 2018 The first thing that comes to mind is migraine with aura. Have you told them about the pain with it? Does the pain come on with the visual symptoms, before, or after? (I think with migraines usually the visual symptoms precede the headache, but can also occur separately (and certain types of headaches can cause eye pain as well)). I'm not totally sure what causes these kinds of symptoms. I have an astigmatism too and I get floaters as well from time to time - I think generally related to a sudden blood pressure increase. Certain autoimmune diseases (which can cause dysautonomia) can cause eye symptoms including visual disturbances, redness, and pain. Sjogren's Syndrome comes to mind, but I'm not sure if that fits your symptoms and it usually involves dry eyes or mouth... and possibly a bunch of other systemic involvement. Quote Link to comment Share on other sites More sharing options...
sleepy_lady Posted August 17, 2018 Report Share Posted August 17, 2018 I get dry eyes really bad sometimes, it was the worst when I was 17 or so. It's been so bad, I've had to peel my eyelids off of my eyeballs after waking up (yes, literally peel) and then make myself yawn repeatedly in order to make the smallest amount of tears so I could blink. Quote Link to comment Share on other sites More sharing options...
aaronh819 Posted August 26, 2018 Author Report Share Posted August 26, 2018 The pain and visual disturbances are always there neverending. From what I’ve been told the migraines with aura wouldn’t stay all the time. It has gotten progressively worse to where life is pretty much at a stand still. I just Pray from the bottom of my heart for relief for things to get back to normal please Lord. This has all but taken life from me. I have been clinically diagnosed with Lyme and a coinfection babesia but it wasn’t a strong positive. I’ve been on iv treatment for several weeks with things only getting worse. I did go back to my lyme doctor Thursday and he added a bunch of medicine I am just Praying with everything in me that this will be the answer to healing. Whenever things just continue to get worse it’s hard to stay positive that it’s gonna get better I am just Praying so so hard this medicine he added will be my key to healing back to normal. I have been through so much without any help it is unreal. I’m just keeping all my faith in God that things will work out and be restored back to normal. So many problems like this it’s so hard not to fear there’s something else going on I would just like to think with all the head scans and things I’ve had there’s no way they could have missed anything at all. Please anyone that has experienced anything like this please continue to help if you can. Thank you so much and God bless all Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 26, 2018 Report Share Posted August 26, 2018 @aaronh819 - I know of 3 people that have had a very bad and incapacitating reaction to Lyme's disease. One girl was bedridden for over a year and could not even graduate high school. She is now the working mother of 3 children and has no longer any issues. Another person - my vet - was out for a vey long time as well from Lymes and now runs her practice again. A friend of mine had Lymes and was severely ill for several months. He is still not completely well but is back to work. Do not loose hope - keep going strong, try every day to be positive and I will pray for you as well. Quote Link to comment Share on other sites More sharing options...
Weary Posted August 26, 2018 Report Share Posted August 26, 2018 Try closing each eye seperately and look at an Amsler grid. Are the visual disturbances you are experiencing present in each eye? just one? also look in mirror and make sure your pupils aren't too dilated, so look in fairly bright light when they should be small. ever try GABA to try to downregulate the neural signals? I get a bunch of peculiar eye syptoms too. they also have things in common with migranous aura but not compltely. so lasts all night long every night, starts up a soon as I start to drift off to sleep. I see a black circle; i think its a negative scotoma, and its surrounded by some scintilliationg lines. Then by am the circle gone but there's like a chekcerboard of scintillating lines. Lately i've gotten visual snow. NOt sure if mine are blood flow related, You might find this of interest https://www.reviewofoptometry.com/article/visual-aura--and-scotomas-what-do-they-indicate I think I may have a bartonella infection by the way (based on DNA testing on my skin, nose, mouth and gut), though all the cranial nerve stuff started with a rash that I could swear was either zoster (shingles) or simplex 1 (cold sore virus) given the nerve pain that preceded it. But perhaps i had some other infection that goes after nerves. Quote Link to comment Share on other sites More sharing options...
Weary Posted August 27, 2018 Report Share Posted August 27, 2018 Ps. Forgot to say - also look yourself at the MRI report if u havent already. theres something whose name i fofgot that can produce weird visual symptoms even tho docs will say "normal". Cant remtmber if neural auto antibidies have been raised. Quote Link to comment Share on other sites More sharing options...
statesof Posted August 30, 2018 Report Share Posted August 30, 2018 Hi @aaronh819 when I first got sick (this is way before POTS or anything autonomic was even considered) most my symptoms were cognitive and visual. My eyes were fine but the parts of my brain that deal with visual perception had the problem. I had terrible brainfog, it was extreme; it would be hard to remember what I was going to say next in a sentence, I would drop words randomly, I would just feel like I was never all the way there. Visually I had that 'shutter' effect at times like when you move your head from left to right you feel like your seeing frames rather than a normal smooth visual, sensitivity to light, trails after moving objects, afterimages from everything, visual snow, camera flashes and certain lights get that 'burned in' afterimage effect you mentioned, tons of small visual trails when looking at the sky they kind look like little strings moving around all over, it takes my vision a longer time to adjust when going from light to dark. I can completely related to a lot of what you experience. - most of the visual stuff was more related to depersonalization disorder in my case, and same with the brain fog, though I'll get a different type of cognitive disfunction/ brain fog that is more directly related to POTS and the blood flow to my head. Quote Link to comment Share on other sites More sharing options...
Steph2397 Posted September 13, 2018 Report Share Posted September 13, 2018 @aaronh819 My eyes were really bothering me for the first few weeks of my diagnosis and one day I feared that I would lose vision in my left eye as it felt so weak, slow and blurry. My left eye would hurt badly and my eyes would suddenly become sensitive to light. I would feel like I had just studied for 10 hours when all I did was watch tv for a few. I also had TERRIBLE head pressure, I thought I had brain tumors. My eye symptoms went away for a few weeks, but my other symptoms persisted and got worse. I forgot about my eyes and thought they were all fine. Then, I went to a brain center and they did testing on me saying that my vestibular system was so off, that my eyes were affected even if I didn't notice it at times. My brain thought upright was my head tilted 45 degrees, and my eyes did not work together at all to help orient my whole body. He said it can be a common thing with dysautonomia, so maybe you should go see a vestibular specialist or ENT doctor? Your eyes could be a symptom of something else wrong in your body. He ended up relieving most of my POTS symptoms by a large margin in five days! Quote Link to comment Share on other sites More sharing options...
CuriousThinker Posted October 3, 2018 Report Share Posted October 3, 2018 When I look at things close up my vision shakes. No idea what it is. Maybe dancing eye syndrome. When I was young my vision would look bright and dark at the same time like high contrast. I developed dry eyes in recent years too. Quote Link to comment Share on other sites More sharing options...
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