I searched and saw some posts where people mentioned nystagmus. It seems it might be acquired though? Made me wonder if Eagles was causing it for some people or if people with it are more prone to getting Eagles?
I was born with congenital nystagmus and strabismus. My eyes shake, but the world doesn’t for me as I was born with it and brain adapted to it. But, I have had bouts of double vision because of Eagles. Folks with my disorder tend to hold their heads in certain postures to see better; which, I suppose could cause issues that lead to Eagles?
So, is there anyone here with a form of nystagmus? Congenital or acquired? If acquired, how do you think you got it?
What an interesting problem with your eyes, @LittleBird. I’m glad your brain has adapted. Can strabismus be corrected surgically or is it one of those things that can be helped with glasses w/ special lenses? I’m completely ignorant about it.
I’ve had nystagmus but usually associated w/ severe vertigo. I also have it occasionally when I’m very tired. My eyes will quickly move back & forth a few times which does affect my vision but only for a second or two then all goes back to normal. My son can purposefully put his eyes in a state of nystagmus i.e. make his eyeballs move back & forth very quickly. It’s kind of creepy!
As far as nystagmus/strabismus being related to ES, it seemed like a stretch until you mentioned having to hold your head in a particular position/posture to see better. In that context, it makes sense there could be a relationship. Many of our members seem to have lost the lordotic curve in their cervical spines. Though we’re not sure if this causes ES because of the change in neck flexibility or if ES causes neck straightening. It’s a “Which came first, the chicken or the egg?” scenario. I lean toward poor posture creating a straight neck or forward head posture which in turn causes styloid elongation &/or stylohyoid calcification as the body tries help stabilize the neck in its new position. This idea would fit with your situation. I don’t know that any papers have been written with a view to looking at the long term effects of poor posture on the neck which could include the development of ES.
Interesting! Have you always had this movement happen or did it start at a certain point?
Strabismus is crossing. My doctors have felt my strabismus happens intermittently to dampen the shaking. People do get eye muscle surgery for strabismus but I am not a candidate due to the nystagmus. Surgery could cause it to worsen or cause double vision. I can drive and am independent unlike some folks with congenital nystagmus and my vision is decent considering.
Interestingly, my eye doctor I’ve seen since a baby has always said my case is complex and different than most of his patients, He sent me down to Bascom Palmer, the eye research hospital, and they seemed pretty tickled by my eyes too despite seeing similar cases all the time. I randomly got double vision and increased shaking that lasted 6 months and then randomly went away at one point. My doc has mentioned he has thought there is something medical going on with me underlying. My neuro says it’s my nystagmus: my eye doc says medical or neuro. No one has been able to agree.
Another interesting thing…you say you feel the straightening of the neck causes the ES. For me it has felt quite the opposite: I have always felt a tug of some sort pulling my head forward and attempts to correct it (chin tucks) has been disastrous. I met with a spine doc that worked at Mayo yesterday and he mentioned my cervical spine is fine and wouldn’t be causing any of these things. He did mention a lot of Eagles patients report the same “pulling” or “tugging” sensation.
So, I suppose my feeling is that the ligament has always been tighter or more fibrotic in some way that has pulled my head forward. I do have less of a curve now, but it wasn’t always that way but it has always been difficult gettting my upper neck to draw back. I always had this idea that if something could be “snipped” I’d be free haha.
Anyway, it is difficult to say either way which came first. I think I’ve always just been so aware of my body, head/neck positioning due to how it affects my eyes. Even now, if I stand straight against the resistance, they shake more, I get blurry vision etc. I almost have to put it in the position the ligament is tugging for it to settle. I’m not sure if the ligament has always compressed something affecting my eye? I should also mention I have quite a small/thin frame and longish neck so there’s less space between all the structures and I suppose less room for error.
I work in healthcare and with tons of doctors so all of this is really interesting as I’m learning; albeit painful and unfortunate haha.
Interesting theory, it makes sense that maybe holding your head awkwardly has affected the neck curve & potentially contributed to ES… interesting too that you feel that tension/ pulling in your neck, that also makes sense as the styloids attach to the hyoid through the stylo-hyoid ligaments, then back up the other side like a chain; any tension because of calcification in one area will stop the hyoid & whole chain moving freely. But the only connection structurally that we usually see between the styloids & the eyes is:
if the IJV is compressed it increases head pressure, which can compress the optic nerve & affects the eyes,
if the styloids compress the ICA it can cause eye pain, or
it could be that compression on the Trigeminal nerve could affect the lacrimal nerve, which makes moisture for the eye…
I have looked before & can’t see any nerves which have motor function to the eyes which could be affected by ES, but maybe there are other neurological effects which we don’t understand through vascular ES
I agree. I don’t think it causes the shaking. However, blurred vision does increase the shaking because the eye is trying to “fill in the gap” caused by nystagmus which is typically retina related (for some, there is sixth cranial nerve palsy but that is not my case. They never found a reason for mine). Kind of like a camera shutter. For example, LED lights or any light that has an undetectable flicker/strobe, I can see clearly. So LED lights are always strobing to me (Christmas is super fun). Additionally, there is typically a “null point” for nystagmus where the shaking decreases (this is the spot where most eye dancers turn their head towards).
If blurred vision occurs (this seems typical with some folks with ES as there is compression you mentioned that can cause it) it then makes the eye shake more trying to find that sweet spot or fill in more blanks. This is also why folks with nystagmus struggle with taking any meds that cause dry eyes or blurry vision (so, almost all of them) as it can lead to double vision or increased shaking. Note about dry eyes: I did get a very random and intense onset of mebomium gland dysfunction (extreme dry eyes) when the double vision and bluriness started. All of this occurred after doing chin tucks. My hypothesis would be that the change in posture and chin tucks compressed something that caused the dry eye, leading to blurred vision which lead to double vision. It felt like so much pressure in head and stabbing pain in my face and eyes.
According to my eye doc, I either do not have a null point or mine is dead straight ahead (could be why my head goes forward?? But I also tilt my head to the side to steady mine usually so not sure if that’s true).
I do feel like Ive always had the pulling sensation even with a neck curve. Something has restricted the top part of my neck for as long as I can remember. I’ve always been told I have great posture and try not to use forward head or slouching. However, regardless of how much yoga, strength training, PT etc, my head wants to tug forward. My PT has mentioned that in some positions I have a cervical curve and in others I don’t. I wonder how it would be if I got the ES surgery. I wonder if I would free up that top half of my neck.
I also wonder, how many people with ES might also have a tongue tie. Tongue tie limits hyoid movement and causes a natural predisposition to bring the head forward to open the airway. Not saying that any of this is true, it’s just interesting to see how some of these things might be related or one can complicate another in some way. Other than EDS, I wonder what other comorbidities can lend itself to causing ES or if ES can cause. Like you mention, chicken or egg.
I love the way you think, @LittleBird, and also appreciate your sense of humor. I’m also a speculator (as you could possibly tell) regarding what can possibly lead to what when it comes to problems in our bodies (w/in certain limits). The human body is so intricate & complex no one short of God will ever understand it completely even with the progress being made now.
This is a good question. The theories as to causes of ES that have been put forth on our forum have been heredity (we have examples here), hormone imbalance (parathyroid issues), neck/head injury, hEDS or vEDS, CCI/AAI, braces on the teeth changing the position of the jaw - things that would cause the brain to sense the neck is unstable & needs added stability or things like scar tissue from a tonsillectomy & neck muscle imbalance that put pressure on the styloids/stylohyoid ligaments directly, causing them to elongate or bulk up.
I’ve had it as long as I can remember though maybe not when I was a child. It may have started during my teen years. I’m 68 now so that was along time ago.
I’ve had problems with fluorescent lights since I was in school. Sitting in a windowless room with only fluorescents puts me to sleep. My mom had the same problem. She said it was because of the mesmerizing flickering of those lights detectable by the brain even if not by the eyes.
I’m also a speculator (as you could possibly tell) regarding what can possibly lead to what when it comes to problems in our bodies (w/in certain limits). The human body is so intricate & complex no one short of God will ever understand it completely even with the progress being made now.