Vision and Muscle Tension Issues

[Abe]

Anyone experienced this severe a vision issue?  My eyes feel so heavy, painful and blurry.  It feels like they are going to fall out of the socket or go blind.  I work with computers so maybe it has to do with that but my glasses have blue light protection. I'm freaking out badly now because I don't know what I would do with my life if I go blind.  My body tension have been so bad lately to the point that its causing me some neurological symptoms.  Muscle tensions all over my head.  I can't imagine life being like this for the rest of my life.  I don't know what's causing all these.  Not sure if its POTS, anxiety or depression.  Just tired.

[MTRJ75]

I have blurred vision frequently, especially after being physically active, but I've also realized that my eyes will dilate slightly without cause. I'm now much more sensitive to light as well. I realized this when the eye doctor dilated them and I noticed it was an exaggerated version of what I'd been experiencing. 

I just finished the exercise presentation from the 2020 Dysautonomia Conference where the therapist mentions that posture and positioning in the neck can be a major cause of vision issues. Pretty mind blowing and (pardon the pun) eye opening stuff. I'm now wondering if it's something that can be rehabbed as I've never had any vision issues prior to autonomic dysfunction a few years back. 

[POTSius]

55 minutes ago, Abe said:

Anyone experienced this severe a vision issue?  My eyes feel so heavy, painful and blurry.  It feels like they are going to fall out of the socket or go blind.  I work with computers so maybe it has to do with that but my glasses have blue light protection. I'm freaking out badly now because I don't know what I would do with my life if I go blind.  My body tension have been so bad lately to the point that its causing me some neurological symptoms.  Muscle tensions all over my head.  I can't imagine life being like this for the rest of my life.  I don't know what's causing all these.  Not sure if its POTS, anxiety or depression.  Just tired.

My experiences with eye achiness and head muscle achiness is quite similar. Quite debilitating symptoms.

For the head achiness, I have found self-massaging the achey muscles has helped tremendously. Multiple times a day, but massaging each place only 10 seconds or so. In my experience this takes some time to work, days to weeks. Specifically all over the temporalis, frontalis, occipitalis, even some muscles in area right behind ears. This is just my experience though.

I find the eye achiness gets worse with allergies.

I find reading small print is particularly bad, and I have my browser, etc configured so everything is large print, which helps a fair amount.
 

[Abe]

Thank you @POTSiusand @MTRJ75.  Really appreciate your responses.  The muscle tightness and aches around the head make it difficult to breathe most days and my body compensate by sniffling constantly when it gets worse.  Its like something is pressing down on my nose.  As for the neck positioning, I have had issues with my neck now for over 4 years and I used to get weekly adjustments but since my POTS flare up, I have only been able to see my chiropractor once in like 3 months.  Scared to even get behind a steering wheel right now and drive for two blocks.

[JimL]

I have intermittent esotropia. Went to Mayo, not allowed to talk about my experiences here, but it came on in the time frame of all this stuff. 

[Pistol]

@Abe - blurred vision and other eye problems are common in dysautonomia. The ANS controls pupil dilation. I too feel my eyes get strained, and even burny, and blurred when I am on the computer or TV for too long. That is despite a good report from the eye doctor ( I wear glasses ). 

The head-muscle and neck pain in my case is also from POTS. I have HPOTS and the high adrenaline levels and low oxygen cause constant tension in my head and neck. Even to the point that I clamp my jaw so hard all of the time that I have ground and cracked my teeth over time. I have chronic tightness in my neck muscles, PT helps a bit and trigger-point massage. But mostly I have to take half of a muscle relaxer when it gets too bad.

[Abe]

Thanks @Pistol.  Really appreciate taking time to comment.  I guess it's been difficult for me to accept all these and maybe its the reason why I find it too difficult to deal with sometimes.  One minute, you feel like you are okay and the next, h*** breaks loose and not just in small doses, its a full blown breakdown.  Dancing around the extreme polar ends, makes life so miserable.  Like today, I woke up okay and thinking, today is going to be better and suddenly, around 11am, it was pain and soreness at every join all day.  I just finally got up around 7pm to get some work done.

[Pistol]

@Abe - I am so sorry! Yes, the unreliability of our abilities is the worst part of POTS - but unfortunately a real symptoms that is difficult to treat. I always tell people that it is like balancing on a silk thread: one unexpected breeze or startle and down you go ... My sister has POTS and suffers from eye problems. she was put on Mestinon by her autonomic specialist and the problem got much better. Mestinon is a commonly used treatment for HPOTS. Maybe something to look into? 

[Abe]

Thanks@Pistol.  Sorry I couldn't respond earlier.  Its been a very miserable few months and each day seems to be worse than the next. Some days, I really don't know how to handle it than just lay down and pray that I make it through.  No medication has worked for me and I am so tired of trying.  Not sure what to do anymore and I can't drive right now to take myself to go see another specialist.  Just tired.  How others go through these daily, is still a mystery to me.  No one should be suffering like this.

[Jyoti]

@Abe--yes, yes, yes.   The weariness is sometimes the worst.  Not just the fatigue, but the utter exhaustion with the whole situation, the unpredictability, the limitation and the relatively unrewarding exercises we go through to get help.  I am so sorry that the last few months have been so bad.  I get it, I know it. 

On 3/21/2021 at 4:43 PM, MTRJ75 said:

I just finished the exercise presentation from the 2020 Dysautonomia Conference where the therapist mentions that posture and positioning in the neck can be a major cause of vision issues.

I know that blurry vision and muscle tension are just a segment of what you deal with, but I get a lot of relief for both using cervical traction.  It is pretty amazing--I can go around all day not really aware of how blurry everything is--it just is the way it is--and then I traction my neck and things spring into focus.  It is like the vaseline coating my corneas just disappears.  And it helps with neck and head and upper back pain as well.  I know that so often what works for one of us is not the answer for anyone else, but I share this as it has been a life-saver for me.  Traction just tamps down the worst of the symptoms for a while and that enables me not to crash or flare further. 

[Abe]

Thanks@JyotiIs there a device you use or specific exercise that was recommended?

[Jyoti]

T

2 hours ago, Abe said:

Thanks@JyotiIs there a device you use or specific exercise that was recommended?

@Abe-- I use comfort trak cervical traction device , it is a huge expense, though well worth it for me. I pump it up to about 20 lbs (no more!!) and sit for about 3-5 minutes, let it down and rest a couple of minutes, then back up for a few, down again and rest all for about 10-15 minutes.   Sometimes twice a day.

I got to try this out (there are a few brands but this is the cheapest, I think, of this particular mechanism) at my PT's.  It worked well at the office so she lent it to me for a couple of weeks, which helped me decide to invest. I don't know if you could find a place to try it out, or order it from somewhere you could return it in a week or two if it doesn't help.  Also useful to me in identifying my neck as a place of both suffering and relief was having someone do gentle traction while I was lying down--just very gently pulling my head away from my body.  I immediately had good feelings from that movement which was part of what encouraged me to keep looking at what I could do with my cervical area and to take the leap into something more expensive than a caring friend to pull on my neck!

Another thing I found of dramatic but fleeting help was a kind of chiropractic called Atlas Orthogonal.  The adjustment is only to the uppermost vertebra, and done with sound waves.  Again--$$$ to get started.  But my first adjustment was a revelation.  I felt like myself--totally--but better.  Colors popped, sounds were sweet, my head felt weightless and I was gliding while I walked. Unfortunately the payoffs lessened with each adjustment, so I stopped.  But still--information!

[Abe]

Thanks@JyotiI am going to try one out.  Will talk to my chiropractor too if she has any recommendation.  My neck is almost causing me to have a blackout.

[Jyoti]

More and more I am impressed by how much vital stuff is lodged in such a narrow channel and thus, how easy it is for something to go wrong....  Have you seen anything written by Jeff Woods on this subject?  Might be of interest.

[Jyoti]

@Abe--also, because of the above--BE CAREFUL!  I would --if I were you--ask my chiro to trial some gentle upward traction and see what it does for you before you do anything on your own.  Necks can go pear shaped in many different directions!  

[Abe]

Thanks @JyotiI was able to see a new chiropractor last week and x-rays showed my neck and spine are in bad shape.  I asked her about the device and she told me to hold off for now and see how I respond to few treatments before we come back to it,  Really appreciate you following up.

[Ashc]

Hi there. It's really hard to adjust to the changes in our bodies. I haven't had any issue with my eyesight. I have a friend who had what you described. Hers is different though. Been going to the ophthalmologist for some time but getting worse only to find out that she has brain tumor.

[sitcedar]

Self‐diagnosing is not good. When you have a condition that should have been easily treated if diagnosed early.

[yogini]

On 3/21/2021 at 4:18 PM, Abe said:

Anyone experienced this severe a vision issue?  My eyes feel so heavy, painful and blurry.  It feels like they are going to fall out of the socket or go blind.  I work with computers so maybe it has to do with that but my glasses have blue light protection. I'm freaking out badly now because I don't know what I would do with my life if I go blind.  My body tension have been so bad lately to the point that its causing me some neurological symptoms.  Muscle tensions all over my head.  I can't imagine life being like this for the rest of my life.  I don't know what's causing all these.  Not sure if its POTS, anxiety or depression.  Just tired.

Eye pain can also be a migraine.  I would definitely go to a doctor and get this checked out.  It could be dysautonomia related or not.  I would not assume it necessarily has to do with your eyes or will end in blindness.  Sometimes chiropractors can be helpful and sometimes they can make things worse, so that is also something to consider.

[Jyoti]

@Abe--you are getting lots of advice and opinion, so I kind of hate to pile on, but I am trusting that you will pick and choose like someone at a banquet, taking what appeals and leaving the rest.  I did want to say that I am glad to hear that you saw your chiro and got the X-rays, guidance.   That is really good even though the information was --I am sure--not all that welcome.

I wanted to mention one other thing that helps me sometimes and while it may be totally obvious, I often forget it.  Ice.  On my neck.  I am pretty certain that whenever I get the tiniest bit of inflammation there, things all over go haywire, so icing it tends to calm things down a bit.

Good luck.

[Abe]

Thank you so much @Jyoti.  I actually only had one session with the chiropractor before I ended up in the ER with what now seemed to be a POTS flare but I will try the ice pack idea.  Just got back home on Monday after a three days hospital stay.

[Jyoti]

Oh, man....you are having a really rough time of it @Abe.  All good wishes that this spate of terrible health resolves very soon!

[Nin]

My eyes are just a nightmare for me. I already feel trapped and because of my eyes I can't read, sew or look on my phone. Seen a eye doctor and they think its my ears causing it. If I strain them too much they get really sore under my eyelids. I can't focus, can't look up, can't look down or turn them to the side without getting dizzy.

[Ashc]

15 hours ago, Nin said:

My eyes are just a nightmare for me. I already feel trapped and because of my eyes I can't read, sew or look on my phone. Seen a eye doctor and they think its my ears causing it. If I strain them too much they get really sore under my eyelids. I can't focus, can't look up, can't look down or turn them to the side without getting dizzy.

Have you had this checked?

[Nin]

8 hours ago, Ashc said:

Have you had this checked?

My ears have been a problem for me. I've had 2 major operations on both ears, but wouldn't have thought my eyes are a problem because of my ears. I had a benign tumour in my ear and it ate through the bone that separates the brain and the ear. Im sure I still have a hole or something there as I'm still off balance and I had it repaired 1 yr ago now.