Anyone Have Vision Problems??

[mjan]

I am new to this.. so bare with me.

My vision.. clarity and focus ..seems to go in an out..sometimes blurry or double vision where letters are seen BELOW the letters not doubled as in twos..making me very dizzy and spacey. It seems to coincide with autonomic symptoms. My new neuro who is the middle of diagnosing me but does think I have an auto nomic disorder..says he thinks my pupils are constricting..affecting my vision.

Anyone have this?? Along with weakness..dizziness etc?

I am afraid as its been affecting my job.. my typing..and ability to be mentally focused as well.

Thanks...Jan

[all4family]

Hi,

I have had many problems with my vision. Most improved after getting off some medications, but my worst was this almost hazy look. It seemed to come when I was feeling my worse. I also have had double vision, depth perception problems, (I don't know if that is related to vision) Unable to see things clearly especially like large buildings just looked fuzzy and strange. My eyes feel like they are jumping, especially if I move to quick. The absolute worse vision problem I had was there was something like a black outline around my field of vision, then it got bigger and bigger (the black part) until there was only a small hole in the center I could see out of, and couldn't even tell you what I was looking at. I (hysterically) got my keys to go to the doctor, and tried to find my way out the door, until it hit me I couldn't drive! I couldn't even see! My vision ended up completly black like I was 100% blind. This lasted for about one hour, and was very scarey. When I did go to the doctor (with a well visioned driver) she said it sounds like a migrain. I have since never had that severe of problems, but do have little things that look like bugs, and the hazy thing is still there. I don't know if it is related to dysautonomia or not, but it is very frusterating. It also improved dramatically after getting off of medications that were causing many more issues than this. I hope this helps some to know you are not alone. take care.

Suzy

!

[mjan]

Hi,

I have had many problems with my vision. Most improved after getting off some medications, but my worst was this almost hazy look. It seemed to come when I was feeling my worse. I also have had double vision, depth perception problems, (I don't know if that is related to vision) Unable to see things clearly especially like large buildings just looked fuzzy and strange. My eyes feel like they are jumping, especially if I move to quick. The absolute worse vision problem I had was there was something like a black outline around my field of vision, then it got bigger and bigger (the black part) until there was only a small hole in the center I could see out of, and couldn't even tell you what I was looking at. I (hysterically) got my keys to go to the doctor, and tried to find my way out the door, until it hit me I couldn't drive! I couldn't even see! My vision ended up completly black like I was 100% blind. This lasted for about one hour, and was very scarey. When I did go to the doctor (with a well visioned driver) she said it sounds like a migrain. I have since never had that severe of problems, but do have little things that look like bugs, and the hazy thing is still there. I don't know if it is related to dysautonomia or not, but it is very frusterating. It also improved dramatically after getting off of medications that were causing many more issues than this. I hope this helps some to know you are not alone. take care.

Suzy

!

HI Suzy.. dont mean to scare you ..but have you ever seen an MS neuro?? That black hole kind of vision problem COULD be optic neuritis. Its worth it to get a work up with an EXPERIENCED MS doc. AGAIN.. I do not want to scare you.. MS is not as bad as some think...they have amazing treatments now. Where do you live? You can contact me privately..ok?

But I am looking at more fuzzy..focus related vision problems that come on suddenly..feel SPACEY..and DIZZY when it does. Is is autonomic or more in the migrain field..anyone???

I have both according to my new neuro...

Thanks Jan

[lloppyllama]

well I have migraines due to by autonomic stuff, so I feel like it is likely to be both...it is for me anyways. I get the same weird vision issues as you described. They tend to happen on days when I am feeling really sick, so I would definitely have dizziness and fainting going along with the eye issues. I had my eyes checked by an eye doctor, and he thinks that its just due to my POTS, and that my eyes arent getting enough blood flow and so they dont function properly....just like everything else in our bodies!

I dont know what to tell you on how to fix it for your job, just keep up your liquids and salt intake! Thats what makes a difference for me.

Best of luck!

-Mary

[mjan]

well I have migraines due to by autonomic stuff, so I feel like it is likely to be both...it is for me anyways. I get the same weird vision issues as you described. They tend to happen on days when I am feeling really sick, so I would definitely have dizziness and fainting going along with the eye issues. I had my eyes checked by an eye doctor, and he thinks that its just due to my POTS, and that my eyes arent getting enough blood flow and so they dont function properly....just like everything else in our bodies!

I dont know what to tell you on how to fix it for your job, just keep up your liquids and salt intake! Thats what makes a difference for me.

Best of luck!

-Mary

Thanks Mary for you insight. I was a bit panciky about whether I could still work. I have noticed that I have trouble seeing at night too. BUt not sure about taking SALT.. not yet. I have Hypertension..and awaiting for results of my auto testing..with the specialist. BUt what you said makes sense. I am so new to all this..but have had symptoms for years.. it all seems to be getting worse of late.

Jan

[firewatcher]

I get this too. I can't focus well, especially at night. Lights and digital numbers are always in double vision. The neuro-opthamologist I saw said it was early onset presbyopia, but I think it is too coincidental that it came on with many of my worst ANS symptoms. You aren't alone, I can see two of you!

[jump]

I have terrible night-vision and cannot see very well at night at all. I want to get glasses, but I can only afford so many doctors' appointments...

I've also noticed that I often don't see well for the first few hours of every morning. I've heard your vision can change during your period due to a change in your bodily water %; in the morning I often feel dehydrated and more potsy, so I've always assumed the blurry vision had to do with a change in my fluid percentage that is rectified once I've had enough to drink.

[mjan]

I have terrible night-vision and cannot see very well at night at all. I want to get glasses, but I can only afford so many doctors' appointments...

I've also noticed that I often don't see well for the first few hours of every morning. I've heard your vision can change during your period due to a change in your bodily water %; in the morning I often feel dehydrated and more potsy, so I've always assumed the blurry vision had to do with a change in my fluid percentage that is rectified once I've had enough to drink.

So....do you still drive at night? At all?I Have had my RX for glasses changed 2 times over this.. only to get the new glasses and its not any better.It changes..and YES I remember how I could not see when I got my period (I am PAST that part of life..thank goodness). AFter my period started..my eyesight would CLEAR up...go figure.

Thanks for responding

[Rachel]

I have difficulty with focusing. My doctors believe it is another symptom of my dysautonomia. The ANS is in control of focusing your eyes, so it makes sense that having dysautonomia may cause your eyes to not focus as they should.

I seem to have more difficulty with my vision if I am going back and forth between looking at something that is close up (within 2 feet) and something that is farther away, especially if it is 10 feet away or more. I find it easier to stay with one task for a while. For example, my eyes get tired quickly if I go back and forth with typing on the computer and turing my head to talk with someone across the room. My eyes just can't keep adjusting. They get tired out.

As for the weakness and dizziness, the weakness never goes away for me. The severity of my dizziness comes and goes.

I do have times when suddenly a wave of dizziness and fuzzy vision comes over me. It seems to be because of dysautonomia and lack of blood flow to my brain.

I'm sorry you're having trouble with vision. It definitely makes reading, writing, etc. a challenge. Just to make sure that there isn't something wrong with your eyes, have you been to an eye doctor?

Rachel

[mjan]

I have difficulty with focusing. My doctors believe it is another symptom of my dysautonomia. The ANS is in control of focusing your eyes, so it makes sense that having dysautonomia may cause your eyes to not focus as they should.

I seem to have more difficulty with my vision if I am going back and forth between looking at something that is close up (within 2 feet) and something that is farther away, especially if it is 10 feet away or more. I find it easier to stay with one task for a while. For example, my eyes get tired quickly if I go back and forth with typing on the computer and turing my head to talk with someone across the room. My eyes just can't keep adjusting. They get tired out.

As for the weakness and dizziness, the weakness never goes away for me. The severity of my dizziness comes and goes.

I do have times when suddenly a wave of dizziness and fuzzy vision comes over me. It seems to be because of dysautonomia and lack of blood flow to my brain.

I'm sorry you're having trouble with vision. It definitely makes reading, writing, etc. a challenge. Just to make sure that there isn't something wrong with your eyes, have you been to an eye doctor?

Rachel

Yes I used to see a neuro ophlamolgist.. had my RX changed 2 times and still no improvement when it happens. Whe it CLEARS..man..its amazing. I also feel like my brain is LOSING o2 or changing.. I can FEEL it it seems.

I just worry if I can no longer work..its only been getting worse

Thanks for responding..thanks for your help..its nice to have someone else to relate to ya know?

Jan

[Rachel]

I should also add that in the past I have had blurry vision due to medication side effects. That may be something you need to rule out.

As for your brain losing oxygen - if too much of your blood is pooling then you may very well not be getting enough blood supply to your brain. If your brain isn't getting a good blood supply then your thinking can be impaired. Do you wear compression hose and/or take a med like Midodrine to help with vasoconstriction? These can help with the blood flow issues.

Cerefolin is also helpful for brain fog.

Rachel

[MelissaCrystal]

I am new to this.. so bare with me.

My vision.. clarity and focus ..seems to go in an out..sometimes blurry or double vision where letters are seen BELOW the letters not doubled as in twos..making me very dizzy and spacey. It seems to coincide with autonomic symptoms. My new neuro who is the middle of diagnosing me but does think I have an auto nomic disorder..says he thinks my pupils are constricting..affecting my vision.

Anyone have this?? Along with weakness..dizziness etc?

I am afraid as its been affecting my job.. my typing..and ability to be mentally focused as well.

Thanks...Jan

My pupils are dilated too much naturally, and my docs think that it's the Dysautonomia doing this. They can't find another explanation. It's causing the same exact issues as yours'. Also, when I'm not feeling well sometimes my pupils are EXTREMELY small, and it causes some other issues.

[carinara]

Hi Jan,

please have a look at :

http://dinet.ipbhost.com/index.php?showtop...mp;hl=binocular

all the best

carinara

[MelissaCrystal]

I definitely don't have the binocular vision, though it's interesting! I bet a lot of people here might have that. I have ghosting/double vision in each eye. A ghost of the object I'm looking at appears overlapping to one side, and it's different on both eyes when I have the opposite eye covered. My docs can only attribute it to my pupils---because ghosting is common with dilation.

[nunibenuni]

I just recently (like this past week) started having trouble focusing my eyes. It usually comes when I'm the most tired (about 2 in the afternoon). I also get it when I stand up to quickly. I will start to see spots. My vision clears from that fairly quickly, but I just get this weird feeling like my eyes are almost focused, but not totally. It's hard to explain. I am assuming that it is just my POTS.

[Guest brianala]

I have difficulty with focusing. My doctors believe it is another symptom of my dysautonomia. The ANS is in control of focusing your eyes, so it makes sense that having dysautonomia may cause your eyes to not focus as they should.

Huh, I never thought about it that way but it makes sense. I'm new to all of this, but I've had that same problem. I have astigmatism, but sometimes I just can't focus correctly, or I find that even with my glasses some days I feel like my eyes are straining. It comes and goes though, so I know it's not my vision getting worse.

I also have problems with visual snow and floaters, but I don't know if that's related.

[ramakentesh]

Visual symptoms can also be explained through excess of either norepinephrine or epinephrine - both of which have been found in POTS patients. Most POTS patients suffer from cerebro-vasoconstriction which means the arteries from the carotids in the throat onwards become very constricted. Since the eyes are the most oxygen hungry part of the human body, they are the most effected by both descreases in blood flow to the brain and/or excessive vasoconstriction which causes tunnel vision, blurring, increases in eye pressure and hallows around lights at night, etc.

[Radha]

i have noticed my eye problems getting much worse just in the past 2 months just getting blurry and hard focusing suddenly, flashing lights in eyes, even with eyes closed, watching t.v. and looking at computer makes it worse but its the worst at nite, and it comes and goes, i wish there was some eye drops or medicine for this! its interesting someone mentioned the blood pooling because i have bad bad pooling when i eat, but the eye problems happen later on,

Radha

[ptalaura]

I have said something about my eyes along with all my symptoms since my first doctors visit. It really concerns me. I get blurry vision. I ride down the rode and at times can't read the road signs. I can't read what is written on the tv. My eyes at times are jumpy and make it unable to read a book/magazine. I went to my eye doctor for my routine check up and mentioned these things along with floaters. She said my vision was ok, everything was ok, probably the POTS. But I can't see! I was sent out the door. Was very discouraged and going to again mention this to my POTS dr because it is really getting bothersome.

[mjan]

Well..its comforting to know that others strugglel with vision/focus problems.

Oddly, when I mentioned it to the autonomic neuro he seemed to know..saying its probably my pupils contricting..BUT...what is scary is that I get dizzy..and my focus goes IN and OUT..like being in a tunnel...I feel weak..funny..its THAT mixture that screws up my day..and makes me wonder if I can work...do my paperwork...computer..driving.

Jan

[ramakentesh]

When I took butchers broom and my POTS symptoms were much reduced my vision returned to normal so for me at least my visual symptoms are a result of POTS or migraine auras

[kkrylee]

My daughter's problems started at 13 with vision blackouts. The 1st one lasted 10 mins. Since then 15-20 x's a day she has a total loss of vision for 30 seconds. She does have mitral valve prolapse & orthostatic hypotension. Her vision problems are worsening weekly, she is now 17, with frequent loss of peripheral vision for as much as 30 mins at a time, frequent spots or lights in vision, and the total vision loss is still 15-20 x's a day but the episodes are lasting longer. The opthamologist said that she has no eye probems except for being near sighted. She wears glasses for that.

No one has yet to give her an "official" dysautonomia diagnosis as no one in Louisiana is knowledgable in this field. We are now trying to get her to Dallas to an autonomic testing center. Her doctors here are stating that they believe it is an autonomic disorder but they don't know what to do.

Her symptoms, like most of you, fill pages. She has 96% of the symptoms listed for dysautonomia. With the worst being a headache pressure at the base of her skull 24/7 for 1 1/2 yrs now, constant nausea, serious vision problems, fatigue, gastro problems, possible migraines, balance issues, etc. She cannot get through a full day without a nap. This is a 17 yr old who was born extremely hyperactive. She is not on medication because we have not yet been able to find a doctor knowlegable enough to treat her. Other neurologists have tried anti depressants and migraine medication. Neither have had any affect on her symptoms.

[mjan]

My daughter's problems started at 13 with vision blackouts. The 1st one lasted 10 mins. Since then 15-20 x's a day she has a total loss of vision for 30 seconds. She does have mitral valve prolapse & orthostatic hypotension. Her vision problems are worsening weekly, she is now 17, with frequent loss of peripheral vision for as much as 30 mins at a time, frequent spots or lights in vision, and the total vision loss is still 15-20 x's a day but the episodes are lasting longer. The opthamologist said that she has no eye probems except for being near sighted. She wears glasses for that.

No one has yet to give her an "official" dysautonomia diagnosis as no one in Louisiana is knowledgable in this field. We are now trying to get her to Dallas to an autonomic testing center. Her doctors here are stating that they believe it is an autonomic disorder but they don't know what to do.

Her symptoms, like most of you, fill pages. She has 96% of the symptoms listed for dysautonomia. With the worst being a headache pressure at the base of her skull 24/7 for 1 1/2 yrs now, constant nausea, serious vision problems, fatigue, gastro problems, possible migraines, balance issues, etc. She cannot get through a full day without a nap. This is a 17 yr old who was born extremely hyperactive. She is not on medication because we have not yet been able to find a doctor knowlegable enough to treat her. Other neurologists have tried anti depressants and migraine medication. Neither have had any affect on her symptoms.

And I thought MY problems were bad. What a great mom to advocate for her. What a lousy vision problem. Has she see a Neuro ophlomalogist?? I hope she gets answers ...and REAL soon..poor dear. How on earth does she do school work?

WHen you put her symptoms in google..what diseases show up? She probably has several I bet.

I will pray for her..and for you. Please let us know that we care about her ok?

Warmly, Jan

[kkrylee]

When her symptoms are put it, the first possibilities are MS, Lupus, Chiari Malformation. The doctors ruled out MS because she has no brain lesions. Some doctors think that it is autoimmune, due to heavy family history with autoimmune disease, but her ANA was negative so they say cannot be autoimmune. AS far as lupus, they say no, but I think that is still a possibilty.

As far as Chiari, one Chiari specialist thinks that it could be borderline Chiari (however he only viewed her MRI's, did not see her in person). She also has an enlarged globular shaped pituitary gland but there is no sign of a tumor on the MRI and she does not have hormone imbalances. One Pituitary specialist said that we cannot completely rule that out yet. We would have to wait a couple of yrs to see if there is growth.

She also has breast fibroadenomas that were biopsied and show no signs of cancer. She has mild spina bifida occulta that does not seem to cause any symptoms. And she has hyper flexible joints, probably Ehlers Danlos. She also has the flushing on exactly 1/2 of her face, Harlequin Syndrome.

But her symptoms most closely match Chiari or Autonomic disorder.

Last yr in school she missed lots of school. This yr as a senior, she only goes half a day so she can come home and nap keeping her GPA at 3.8. She plans on becoming a Pediatric Neurologist. One Neurologist said that she could make it through college but not medical school unless we get her fixed.

She has seen a total of about 15 specialists in the last yr and a half. She has about 30 pages of testing that has been done on her. None of the doctors have been able to treat her or know anything about dysautonomia.

When her symptoms are extreme, she can do nothing. But when not, she is constantly on the go with her Church and her dance. She has been dancing since she was 2 yrs old. Dance is what gives her purpose and the will to push on.

Just like most with these not well-known diseases, it has been frustrating and painful, often feeling like we know more than the doctors. I have studied everything possible in the last yr and a half and should be almost ready for med school (ha).

[mjan]

When her symptoms are put it, the first possibilities are MS, Lupus, Chiari Malformation. The doctors ruled out MS because she has no brain lesions. Some doctors think that it is autoimmune, due to heavy family history with autoimmune disease, but her ANA was negative so they say cannot be autoimmune. AS far as lupus, they say no, but I think that is still a possibilty.

As far as Chiari, one Chiari specialist thinks that it could be borderline Chiari (however he only viewed her MRI's, did not see her in person). She also has an enlarged globular shaped pituitary gland but there is no sign of a tumor on the MRI and she does not have hormone imbalances. One Pituitary specialist said that we cannot completely rule that out yet. We would have to wait a couple of yrs to see if there is growth.

She also has breast fibroadenomas that were biopsied and show no signs of cancer. She has mild spina bifida occulta that does not seem to cause any symptoms. And she has hyper flexible joints, probably Ehlers Danlos. She also has the flushing on exactly 1/2 of her face, Harlequin Syndrome.

But her symptoms most closely match Chiari or Autonomic disorder.

Last yr in school she missed lots of school. This yr as a senior, she only goes half a day so she can come home and nap keeping her GPA at 3.8. She plans on becoming a Pediatric Neurologist. One Neurologist said that she could make it through college but not medical school unless we get her fixed.

She has seen a total of about 15 specialists in the last yr and a half. She has about 30 pages of testing that has been done on her. None of the doctors have been able to treat her or know anything about dysautonomia.

Oh my.. I do FEEL for you and for your dtr..what is her name? Has she had an MRI of her spine? When I first read your post I too thought Chiari..vut how could Chiari be borderline?? And how do you have MILD Spina bifida? Or is it the oculata..whatever that is.

I too have a suspected autoimmune disorder..4 years thinking it looked like MS..then finally having it ruled out. So you can have a differential of a autoimmune disase even tho the tests DONT back it up. A good doc looks at the WHOLE picture.. not just if you fit into the lab results as a certainty.

Know this..(you already do I am afraid). Doctors are limited. Most do not have the time to think OUTSIDE THE BOX Of what they have been trained for. They know how to test.. RX..retest...or evaluate..often good at this..they do surgery..RX..did I say that enough? BUt they do not have ALL the tools in their toolbox. So whenever WE are out of their box..they either make up what they THINK it may be.. or..blame the patient..giving the patient to think its all in their head.. mental. Ironically it probably DOES originate IN the head...the BRAIN..so they may be inadvertantly right.

Phamaceuticals make drugs. DRUGS are the answer. Pharmaceuticals do the RESEARCH...they use THEIR drugs. Its not a bad thing.. drugs work for many. But..when it doesnt... its hard to take. Did you EVER hear of an MD who could tell you the SOURCE of your symptoms?? NOT usually.

ANyway.. I use both tradtitional docs..and holistic ones..or in other words..ones who have MORE training or outside training in evaluating and treating outside of the drug industry. Now thats MY take. But I do have my own experience of those who have helped me outside of WEstern meds. IN fact. my last 2 neuros would SEE the difference and sent me back.

I just feel so badly for your dtr. I wonder why she was chosen for this kind of journey-nightmare. But you are amazing .. hence your dtr is as well. 3.8 and she's sick?? Please dont let ANYONE take her dreams away.. ok?

Hang in there mom,

Warmly, Jan