Could Vision Distortions Be Pots Related? Anxious.

[lynnie22]

For the past couple of days, following problems with my stomach for weeks and on the heels of a laxative, I've developed problems seeing clearly -- I'm dizzy but with everything sort of moving or wobbling. I feel tired, anxious and weird. I'll tell you, I've been having vision problems for months, and I think some are POTS related, there are so many things that happen I don't understand, but this is different and has me concerned about having a stroke or something. I've also had headaches on and off for weeks. Anyway would love some feedback if this is something familiar to any of you. I know this is not a diagnosis forum, I'm just anxious about all of this, and wonder if maybe it could even be anxiety.

If it gets worse I will take myself to an ER. In the meantime, thanks for any feedback.

[Katybug]

http://www.nlm.nih.gov/medlineplus/ency/article/003037.htm

Lynnie,

I have something called nystagmus (both side to side and rotary). An explanation is in the link above. Mine is believed to be from the structural issues in my neck (hopefully another thing that may go away with surgery). Nystagmus can be from several underlying causes. I can feel my eyes moving during side to side nystagmus but when I have rotary nystagmus it just looks like the world around me is wobbling. I don't know if this is what you're experiencing but it could be one possibility.

[galatea]

Maybe it’s Migraine Associated Vertigo (MAV). I’ve had it ever since I’ve had POTS. It causes continuous dizziness or vertigo made worse with head and eye movements, but without the actual migraines or headaches.

If you have blurred vision, I think that's listed as a POTS symptom.

[lejones1]

I second what Galatea said - since you mentioned headaches as well, maybe look into migraines. They're quite common in people with POTS. I never had one until I had POTS, then went through a period of getting them almost daily. Sometimes there would be minimal pain and my only symptoms would be weird visual stuff, sensitivities, and I couldn't think straight. Definitely book an appointment with a neurologist!

[lynnie22]

Hi,

Well I went to the ER only to leave before examination! Is that not crazy! I have no patience in those places which is what you need. Thanks for the feedback -- I've heard of nystagmus, Katie. It is something to keep in mind. And I do have ocular migraines, meaning I become blind periodically. I've had these weird headaches for several weeks, but my vision is all distorted for the last couple of days. Anyway, my visit to the ER left me no wiser. I will try to get an appt with a neurologist, Galatea with MAV and a good catscan or MRI in mind. It does feel a bit like vertigo, which I had several years ago for almost a year. Well with POTS, who knows?

With this I feel exhausted -- especially my eyes. And everything is really bright.

[Katybug]

http://vestibular.org/vestibular-hyperacusis

I found this website to be very helpful on the subject of MAV and several other vestibular related matters.

[blueskies]

Hi lynnie,

Everyone has covered my experiences and more so I have nothing to offer except that there is a list of pots symptoms on this site somewhere that is pretty comprehensive. Visual disturbances are noted, I believe. I'm glad to hear you are going to see a doctor.

Just wondering what is considered a long wait in ER in the US? In Australia I've waited over 6 hours for migraine help for example (I no longer bother with Emergency for that) but for a pretty wild allergic reaction I was seen straight away.

blue

[lejones1]

Hey blue,

I'm an American who has lived in Australia too, so I have ER comparisons!

The longest I've waited at the ER is about 4 hours - actually also for a migraine. I live in a small city though and our ER is rarely that busy. I went to college in a large city and the ER was always packed but I never experienced much of a wait (nor did friends). Not sure how to put this nicely...we were near an area with a lot of patients with lifestyle or self-inflicted wounds/illnesses, and I'm fairly sure they favored people who had "normal" bad-luck issues. A nurse actually admitted that to me once.

I was actually living in Syndey when I got POTS (although didn't get the diagnosis til I moved back) so had some experiences in the ER there too! One thing I noticed there that I liked was that they started treatment in the waiting room - once I got a saline IV and the other time I had a piece of oyster shell in my foot and I got a antibacterial soak. I waited for a few hours each time but thought it was cool they started treatment so early. I don't know if that was a hospital-specific thing or if it's standard in Australian but I've never seen or heard of it here.

A few other differences between the systems: American doctors seem to rely much more heavily on nurses just in standard everyday appointments. Vitals are taken at every single American appointment, even when irrelevant to the issue. I almost never saw that in Australia - when I had bronchitis one doctor actually forgot to take my temp til I was walking out! Appointments here are longer - though we definitely pay for it! Very interesting to compare.

[lynnie22]

Hi blue and lejones,

Interesting comparision. My experience has varied wildly by hospital. If you are having a heart attack or have those symptoms, they take you immediately and set you up on a monitor, take bloods, etc. But I don't know if you see a doctor so fast. Other things it really depends. What I meant by a long wait is two hours and I hadn't seen a doctor yet but was told that I would be there all night before they would give me a catscan. I figured it made more sense to go home and go to the doctor. I have an appointment with a neurologist tomorrow.

I was just talking to a friend who had passed out, taken to the ER and was in the middle of the floor for 17 hours before she got moved into a cubicle, and was hardly treated by then. I know people who have been in the ER for two days before being moved into a room. But then, there are exceptions where you are seen within an hour and treated and discharged within about three hours. Doctors examine you and order tests, mainly are not available, nurses are more available but depending upon the hospital, hardly available either. You often lie there hooked up to something that no one is watching. Last night was impossible and two hours without being seen seemed too long to me. I left and was told that I wasn't really admitted yet, but they had put an IV in, which they removed, although they had no record of it. I got two calls when I got home asking me if I still had the IV in my arm....

[yogini]

Visual disturbances can be a symptom of POTS, even without any vestibular issues. A lot of people post about them on the forum. They could also be a symptom of migraines, medication you are taking or something not related to POTS at all. I would try to schedule an appointment with your dr rather than going to the ER.

[lynnie22]

Thanks, Yogini. Yes, I went to a neuro who has ordered an MRI for tomorrow and vestibular testing next week. We'll see what they show. I'm extremely dizzy -- got worse as the week wore on. I had an ocular migraine on Wednesday after dizzy for several hours, it could be part of migraines, I'm not sure. Hopefully after the MRI and testing, I will know something further, or at least feel a little better.

[blueskies]

Hi linnie and lejones,

I think the last time I was in ER was when I had an non-immune anaphylasis episode. I was seen straight away and this was some 5 years ago. I haven't seen them commence treatment in ER. Maybe it's something relatively new. or maybe a hospital was running a trial on how best to treat patients.

It's always been my experience that once you made it from the waiting room into the actual emergency rooms you get treated straight away. Treatment might come in dribs and drabs, see a doc, then see a nurse then wait then see a doc etc. That's been my experience anyway.

You are so right lejones about docs in their rooms not taking vitals. I'm 58 and when I was younger that was the first thing that a doc did. Temp. blood pressure. heart rate. ears and reflexes and eyes. But something strange has happened with our gps over the years and sometimes you have to ask with some just to get a bp reading -- forget the rest. I now have a gp who takes my bp and pulse without me having to request it. But I wonder how they can really judge how you are doing if they don't do the whole routine they used to do . That's how a lot of stuff gets picked up. My now deceased dog had a vet that used to do all the vitals and observations on her. Every time I took her to the vet she was thoroughly checked. LOL. I have a number of specialists and only ONE does the vitals and reflex test every time. He's the doc who diagnosed me with pots and erythromelalgia.

Emergency is 'free' -- covered by the medicare levy Australians pay each week from their wages in the form of a 'levy.'

I think the health care system is a lot cheaper in countries like England and France and Italy. My sister lives in Italy and she not only does not pay for health care, her meds come free too.

Lynnie , glad to hear you have an appt. with a doc about your vision.

blue

[yogini]

There is a good chance that all of your symptoms are related. What is your HR and BP when you are having these symptoms? Dizziness was my worst symptom with POTS.

Edited May 10, 2014 by yogini

[lynnie22]

You know, Yogini, there may be a correlation. Although I haven't noticed much change in HR or BP perse since the visual changes have been fairly constant (although today a little better -- why? no idea), when my bp is low or my HR is very high my vision also changes, not exactly like this but close. So it may be POTS related. I'm generally sitting -- period -- and that's when my vision is so difficult, gets worse with the day as my eyes get more tired, and when it's really bad, I can hardly keep my eyes open. I guess I'll see what the MRI shows and pay more attention to my HR and BP. Today my HR was through the roof, even sitting.

[gertie]

I have a lot of visual disturbance sometimes from Meniere's, other times from Dysautonomia & migraines. It's impossible to drive when the road seems to be undulating & swaying or your vision is fuzzy. Nothing has ever been found wrong during vision checkups.