Neuro ophthalmology for POTS

[brainchild]

**edit: she does neuro optometry (not ophthalmology). 
 

I heard about this elsewhere recently and wanted to check in with you all about it. There is a doctor in the Chicago area who is using neuro-ophthalmology to treat POTS. I did a few searches of these forums and didn’t come up with anything. 
 

here is a link to her paper

https://condor.depaul.edu/~elliott/ZelisnskyElliottPOTS-H.pdf

Her name is Deborah Zelinsky and she’s in Northbrook, IL. I’ve spoke with someone in the office and they see POTS patients regularly. I asked if they had any patients whom I could talk with regarding their treatment. They didn’t have a list of willing patients but said they would try to find one for me. 
 

It’s pretty pricey for the appointment as it’s out of network for my insurance, plus travel etc. Worth it if effective. 

For context, I’ve had POTS as long as I can remember.  My suspicion has been that it came about because I almost died under anesthesia at age three.  That surgery was to correct a lazy eye.  I’ve also had a concussion and blacked out in a car accident.  They also deal with TBI and lazy eye issues. So my POTS is likely caused by neurological trauma and not secondary to a viral infection and their treatment may encompass a few health issues for me. 

Any input? 
 

thank you! 

[Pistol]

@brainchild - I am not sure of this applies to you but my sister has autonomic neuropathy ( essentially HPOTS without tachycardia ) and they did a special eye exam on her. One of her eyes is cross-eyed, but only slightly. All of her life this caused her brain to be overly stressed trying to make sense of the different images. This was said to potentially contribute to the high adrenaline levels and the brain fog. She now is wearing special glasses and ( not sure if it is new meds, becoming disabled or the glasses - or a combination of all three factors ) has found some improvement of her symptoms and high BP, as well as her stress levels. 

There is a name for this condition but I cannot remember it. It is close to homophobia ( but of course not THAT, lol ). 

[Chiara]

Yes it names heterophoria and I have a foil on my glasses. It helps me when I have to concentrate me. It's supports me well in handling my symptoms. Now I take it 4 month. When I was the first time by thjs special ophthalmologist, she told me my brain was so exhausted, she couldn't make the nessecay examinations. But after 3 month my brain was better. So I am hopeful! 

[MTRJ75]

This is interesting. I know that blurred vision is one of my symptoms, so it makes sense that this might be one of the paths through which the condition might be improved. 

[Chiara]

I get it. The correct name is heterophoria ventricularis and I take a prism foil for it. I have small fibre neuropathy, so I have blurred vision everytime when I read more than 20 min. or have to  concentrate for longer than 20 min. So I take dark glasses when I have to work at the pc. We have in Germany special glasses against migraine too. To spend much time outside in the nature, in the forrest is the best medicine in my case against blurred vision.I put special water drops 3x daily in my eyes, because they are very dry and make a lot of resttimes, all 20 min. when I have to work at the pc... 

[Pistol]

Thank you @Chiara for responding! 🥰

[Chiara]

MTRJ75 I think all things we do to improve our condition or healthproblems makes our habit more stabil, so our ANS can stay better in balance. To develop a good feeling for our body and soul and the feeling of health, seems  to be "the loophole in the eye of the needle" for every form of dysautonomia. I can't change my underlying dysautonomic condition, but I can learn to balance all my other issues, and my dysautonomic symptoms have the chance to improve. That a strong way and just I am a student, but I think that´s it in my case!

[p8d]

@brainchild can you please post or PM me the cost? Thanks.

[GasconAlex]

Not sure if related to the dysautonomia but because of damage to the nerves on the left side of my face I have problems looking to the left. This was first picked up by a physio who said it was important to get it checked out. When to the local orthoptist who realised that part of my troubles come from fighting to correct for double vision. Once she'd run a few training sessions she said that it wasn't improving and to try prisms ground into glasses. This did and does help prevent me from getting double vision except when I am really tired.

As for costs these vary hugely but can be quite cheap. With my last pairs (distance and close were covered by the government insurance - varifocal didn't work for me) I also bought distance vision tinted (as bright light is an issue) with the prism ground in for €29 with no contribution from anyone else. Look around because some prisms can be ground into standard glass blanks and some opticians pass this on to you.

 

 

[MarcoS108]

This doesn’t surprise me as my healthcare practitioner who’s a functional neurologist says the treatment he does for POTS is focusing on brain health (improving circulation, stabilizing blood sugar, addressing causes of inflammation, etc.) and gaze stability work.

[MikeO]

Well had to look this up ophthalmology and see that @brainchildedited this to  optometry. Most Doc's will advise to get an eye examine. They are a window into other health issues. I did pass to some degree my recent one (i had issues with one eye being a bit more dilated) Best i can do for now is to keep any eye on it (pun intended)