Please help me to understand the sensory sensitivity

[Elizaangelica]

I’ve had POTS and struggled with sensory sensitivity for a long time. I’m trying to find information about how POTS/Dysautonomia causes the sensory issues, but all that’s ever said is that it can be a common symptom. But why/how?

I see light sensitivity mentioned here and elsewhere quite often. Lately mine is much worse than it’s ever been (which was already pretty bad). My POTS has also been worse this year, so I figure the two are related.

I’ve just been to a Neurological Ophthalmologist who checked my eyes and said that they’re fine, what I’m experiencing must be a neurological issue. I know the pupils can be affected by POTS, and I assumed this must be what was happening for me, but he said mine were reacting entirely normally. So then how else does POTS cause light sensitivity?

I also get very disoriented and overloaded in busy places, especially if there’s movement like in cars. It’s not a dizziness at all, more just too much info at once. Same with noise. For a while it was thought I might have autism (before my POTS diagnosis), but it never really fit. Now I see sensory issues on POTS symptom lists, and from other’s experiences I can see I’m definitely not alone in this. Now I know it is probably linked to my POTS I just want to be able to understand it more. Like, what are the mechanisms in play? Or is it just a case of me accepting that our autonomic system is broken, and it’s not worthwhile or necessary to understand the science of why any of the particular symptoms occur. It feels like a lot of our issues beyond our heart are just brushed to the side, like “oh yeah, that (totally random) symptom can happen in POTS too”… “Why?”… “It just does”………… 

 

 

[MomtoGiuliana]

Here is discussion that may be of interest

https://www.dinet.org/forums/topic/9412-light-sensitivity-and-dysautonomia

 

https://www.dinet.org/forums/topic/730-light-sensitivity-and-dizziness

 

[MTRJ75]

I have strange light sensitivity issues too. It took the eye doctor dilating my eyes to realize that this is similar to what I'd been experiencing frequently. I can't exactly explain what the light does to me, but sometimes, during the day I feel like I have a concussion and at night, I can't have any lights on in front of me where I can see them. I get a lot of what the eye doctor calls "after image" when I look at something that's lit up, even a screen. That means I focus on something and then try to focus on something else but still have the image of what I was last looking at in my eyes. If I close my eyes, it appears as a purple blur in the shape of what I was just looking at. No answers except for what you've gotten as well. 

[MikeO]

I went to the eye doctor not to long ago. My complaints were blurry vision and on a off day, what seems to me as dimming of my vision (normal lighting that for whatever reason becomes less bright) Only thing that my exam showed was my left pupil was a bit larger than the right and a bit of dryness in the same eye.

Vision wise there was no need for glasses.

[Rexie]

Elizaangelica, just covering over-sensitivity to light (I’m over-stimulated by many things and this all manifests like chronic regional pain syndrome for which I meet the definition), I’ll mention some eye stuff for you I found interesting in my research of this topic. Think circulation. 

From what I understand, Transient visual loss (TVL) is an ophthalmological symptom referring to mild blurring of vision to complete blackness; it can be monocular (one eye, TMVL) or binocular (both eyes). TVL may alternate from eye to eye and it is hard to tell sometimes whether or not one or two eyes are involved. Many conditions, from serious to not-so-serious, can cause TVL. Precipitating factors for transient monocular visual loss (TMVL) include posture, light, eating, exercise, hypotension, arrhythmia, and heat. 

For those of us with dysautonomia involving changes with blood pressure, etc., hypoperfusion (reduced amount of blood flow) of the optic disc or retina, either directly or indirectly, may be common, from what I understand. Visual loss is usually of short duration (2 to 4 minutes), and may be postural, may recur many times a day, and may be associated with photopsia (eye floaters or flashes). There may be associated features like headaches, jaw claudication (pain and tiredness of face and jaws after chewing), scalp tenderness, fever, polymyalgia rheumatic (an inflammatory disorder causing muscle pain and stiffness around the shoulders and hips), etc. Some common causes for hypoperfusion include but are not limited to low blood pressure (hypotension), loss of blood volume, retinal vasospasm, reduced cardiac output, low oxygen levels in the blood, low hemoglobin levels in the blood (oxygen is carried by hemoglobin), dry eye disease, hyperviscosity states, and migraine/retinal migraine. 

TVL can also be light induced apparently. People like me with light-induced TVL suffer from poor to blurry vision or prolonged after image when exposed to bright lights or sunshine. In theory, when the retina is exposed to light, there is an increase in retinal metabolic demand that is unmet by ocular circulation. This can be common in those with choroidal vascular insufficiency from significant carotid stenosis (narrowing of the large arteries on either side of the neck) as in atherosclerosis/high cholesterol. The mechanism behind the more serious hypoperfusion retinopathy results from an overall ischemic cascade and starts with comorbid cardiovascular conditions, such as hypertension, hypercholesterolemia, diabetes, heart disease, and history of smoking. Or for me, less serious ocular ischemic syndrome triggered by low blood pressure causes me visual issues, especially when coupled with light sensitivity. Or maybe it’s vasospasms or all three plus a neuro glitch. 

I've read that retinal vasospasm with decreased arterial perfusion can be precipitated by emotional stress, cold, or exercising. Vasospasm can occur in the cervical portion of the left internal carotid artery, which diminishes blood flow to the ophthalmic artery. Once an episode of delayed central retinal artery circulation ends, all abnormalities resolve.

Ocular ischemic syndrome is the term used when TMVL lasts longer than a few minutes (30 minutes plus). Apparently it is often precipitated by orthostasis (postural hypotension/orthostatic hypotension), general hypotension, postprandial hypotension (drop in blood pressure after a meal), abnormal vasomotor control, hyperviscosity, exercise, sexual intercourse (I do remember seeing stars from time-to-time), and exposure to bright light. Phosphenes and impaired dark adaptation are common. (Phosphenes are the luminous floating stars, zigzags, swirls, spirals, and squiggles that occur when the cells of the retina are stimulated). 

By definition, people with transient visual loss (TVL) almost always present at the doctors’ offices after episodes have resolved and neurologic and ophthalmologic examinations are usually normal. Nothing was ever picked up during routine eye exams for me. The pupillometry portion of my autonomic function testing at UTSW-Dallas did reveal “large baseline pupils and impaired constriction responses to standard light stimulus.” Maybe I’ll learn some new things with my first interventional cardiologist, I go back soon for stress testing with exercise myocardial perfusion imaging and also an echocardiogram.  

My vision is off with eyes seeming out-of-sync when my blood pressure is low or I’ve skipped a meal or had a long day or flare of my deal. I wear transition lenses (photochromic lenses) in my glasses when out which is helpful since they change according to light levels, even in stores. At home, I like my LED light bulbs best, followed by halogen lights or the old fashioned bulbs as opposed to fluorescents. After a stimulating outing or day I like low light levels and quieter activities. After calming herbs to help balance the sympathetic/parasympathetic nervous system, when I can read again, I love to read. If I must read or insist on reading when the novel gets good and my vision gets bad, I’ll close one eye to continue. Often I’ll just listen to news or a TV show instead of actually watching it if my eyes hurt or are not focusing right. I find that improved nutrition which gives my body the raw material to make the neurotransmitter it needs helps me a lot. My latest addition is powdered collagen in my morning smoothie. Regular exercise as tolerated is also helpful. When over-stimulated I’ll pause and not move for 20 minutes to an hour while playing simple phone games so I can regroup and let everything come back into homeostasis, eyes included. Sometimes a short 5-20 minute nap helps. I hate the down time, but such is my life which is better than no life. 

Elizaangelica, learning new things is always nice and it’s perfectly normal to want to know how things work, as well as being often useful. I think we should all be proactive in our health care, going as far as we want and can with education. It amazes me that I never knew much about my body and all its systems much less how it works before my own health downturns. It has given me a new appreciation for life. We are indeed “fearfully and wonderfully made”. 

[Elizaangelica]

@Rexie Thank you for your incredibly detailed response. It’s the first time I’ve ever seen an in-depth explanation of some of the mechanisms in play. I hope that eventually there is more info available for those that want to better understand the whole-body nature of our condition. 

[MTRJ75]

On 11/18/2021 at 4:26 PM, Rexie said:

Elizaangelica, just covering over-sensitivity to light (I’m over-stimulated by many things and this all manifests like chronic regional pain syndrome for which I meet the definition), I’ll mention some eye stuff for you I found interesting. Think circulation. 

Transient visual loss (TVL) is an ophthalmological symptom referring to mild blurring of vision to complete blackness; it can be monocular (one eye, TMVL) or binocular (both eyes). TVL may alternate from eye to eye and it is hard to tell sometimes whether or not one or two eyes are involved. Many conditions, from serious to not-so-serious, can cause TVL. Precipitating factors for transient monocular visual loss (TMVL) include posture, light, eating, exercise, hypotension, arrhythmia, and heat. 

For those of us with dysautonomia involving changes with blood pressure, etc., hypoperfusion (reduced amount of blood flow) of the optic disc or retina, either directly or indirectly, may be common. Visual loss is usually of short duration (2 to 4 minutes), and may be postural, may recur many times a day, and may be associated with photopsia (eye floaters or flashes). There may be associated features like headaches, jaw claudication (pain and tiredness of face and jaws after chewing), scalp tenderness, fever, polymyalgia rheumatic (an inflammatory disorder causing muscle pain and stiffness around the shoulders and hips), etc. Some common causes for hypoperfusion include but are not limited to low blood pressure (hypotension), loss of blood volume, retinal vasospasm, reduced cardiac output, low oxygen levels in the blood, low hemoglobin levels in the blood (oxygen is carried by hemoglobin), dry eye disease, hyperviscosity states, and migraine/retinal migraine. 

TVL can also be light induced. People like me with light-induced TVL suffer from poor to blurry vision or prolonged after image when exposed to bright lights or sunshine. In theory, when the retina is exposed to light, there is an increase in retinal metabolic demand that is unmet by ocular circulation. This can be common in those with choroidal vascular insufficiency from significant carotid stenosis (narrowing of the large arteries on either side of the neck) as in atherosclerosis/high cholesterol. The mechanism behind the more serious hypoperfusion retinopathy results from an overall ischemic cascade and starts with comorbid cardiovascular conditions, such as hypertension, hypercholesterolemia, diabetes, heart disease, and history of smoking. Or for me, less serious ocular ischemic syndrome triggered by low blood pressure causes me visual issues, especially when coupled with light sensitivity. Or maybe it’s vasospasms or all three plus a neuro glitch. 

Retinal vasospasm with decreased arterial perfusion can be precipitated by emotional stress, cold, or exercising. Vasospasm can occur in the cervical portion of the left internal carotid artery, which diminishes blood flow to the ophthalmic artery. Once an episode of delayed central retinal artery circulation ends, all abnormalities resolve.

Ocular ischemic syndrome is the term used when TMVL lasts longer than a few minutes (30 minutes plus). It is often precipitated by orthostasis (postural hypotension/orthostatic hypotension), general hypotension, postprandial hypotension (drop in blood pressure after a meal), abnormal vasomotor control, hyperviscosity, exercise, sexual intercourse (I do remember seeing stars from time-to-time), and exposure to bright light. Phosphenes and impaired dark adaptation are common. (Phosphenes are the luminous floating stars, zigzags, swirls, spirals, and squiggles that occur when the cells of the retina are stimulated). 

By definition, people with transient visual loss (TVL) almost always present at the doctors’ offices after episodes have resolved and neurologic and ophthalmologic examinations are usually normal. Nothing was ever picked up during routine eye exams for me. The pupillometry portion of my autonomic function testing at UTSW-Dallas did reveal “large baseline pupils and impaired constriction responses to standard light stimulus.” Maybe I’ll learn some new things with my first interventional cardiologist, I go back soon for stress testing with exercise myocardial perfusion imaging and also an echocardiogram.  

My vision is off with eyes seeming out-of-sync when my blood pressure is low or I’ve skipped a meal or had a long day or flare of my deal. I wear transition lenses (photochromic lenses) in my glasses when out which is helpful since they change according to light levels, even in stores. At home, I like my LED light bulbs best, followed by halogen lights or the old fashioned bulbs as opposed to fluorescents. After a stimulating outing or day I like low light levels and quieter activities. After calming herbs to help balance the sympathetic/parasympathetic nervous system, when I can read again, I love to read. If I must read or insist on reading when the novel gets good and my vision gets bad, I’ll close one eye to continue. Often I’ll just listen to news or a TV show instead of actually watching it if my eyes hurt or are not focusing right. I find that improved nutrition which gives my body the raw material to make the neurotransmitter it needs helps me a lot. My latest addition is powdered collagen in my morning smoothie. Regular exercise as tolerated is also helpful. When over-stimulated I’ll pause and not move for 20 minutes to an hour while playing simple phone games so I can regroup and let everything come back into homeostasis, eyes included. Sometimes a short 5-20 minute nap helps. I hate the down time, but such is my life which is better than no life. 

Elizaangelica, learning new things is always nice and it’s perfectly normal to want to know how things work, as well as being often useful. I think we should all be proactive in our health care, going as far as we want and can with education. It amazes me that I never knew much about my body and all its systems much less how it works before my own health downturns. It has given me a new appreciation for life. We are indeed “fearfully and wonderfully made”. 

Printed and will be taking to eye doctor with me next month. Makes a lot of sense with my vision and light issues last few years.