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Unstable Pupil Dialation?


k&ajsmom
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Hi everyone,

So in the beginning of this flare im in, I got up one night and had my first feeling of an "elephant" sitting on my chest, I got up and stretched to see if it was my back went and got a drink and then went to the restroom. I looked up in the mirror and my pupils were dialating rapidly from large to small. I shrugged it off as just a wierd thing Ive never noticed. However it is still happening 7 months later, not as bad but pupils "jump" when dilatating rapidly and cant seem to find the size they need to be.

Ive stumbled across that this could be a sign of adrenal insuffeincy, however Ive read adrenal insuffiency isnt real unless your adrenals are diseases. Im confused, is this a real indication of something or just a physical abnormality Ive never noticed before. Im not worried about it just trying to leave no stone unturned...

Anyone else do this or know anything about it??

Thanks {{hugs}}

I cant seem to get the link but if you google "unstable pupil reflex" on u tube theres an example of what Im talking about.

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To me this actually sounds like a neurological symptom, there is one called adie's. Are they treating your hypokalemia and lipidemia? I read your list of diagnoses and treatment and am trying to figure what is treating what. Sometimes meds can cause unexpected symptoms. Some of the things you've posted could be immune system related or autoimmune, any of which can effect your nervous system. Other then the eyes what is a general list of your daily symptoms?

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The eye things started before any meds (except zyrtec and claritan). I am treating the hypokalemia with Klor-con and very high potassium diet, the hypolipidemia I am not treating with anything except a high cholesterol diet and waiting to go back to the doc and follow up on that. List of symptoms is long lol but ill hit the highlights:

Chest pain and spasms, doctor suspects chest pain to be cardiac (elevated cpk mb)

costochondritis, fairly constant for a few years, x ray shows many many fractures some old some new to ribs

increased palitations and pvcs that feel stronger and more frequent

SYncope and blacking vision (dizzyness with that)

get cold and clammy then hot like someone set me on fire,more often cold than hot though.. always low body temp around 96 to 97

feet and hands always cold except when I sleep

cold hives when outside

increase in severity of asthma and allergy attacks everyday

tachycardia CONSTANT, I hate this one!! almost always above 130 when standing and 160 and up when just a shower

Irregular heartbeats with positional change and heavy hard beats intermittingly

A few episodes of bradycardia that Im aware in sleep

Sleep apnea is suspected

Pupil dilation

worsening of nearsightedness and night vision is gone almost completely gone

SEVERE headache and neck pain, also joints hurt hips popp out of sockets slightly as well as wrist and ribs

Headaches make me feel "dumb" ( donyt know how else to explain this lol)

crushing anxiety

tremors and feel drunk and withdrawn a lot

pre term births to both children (mild anemia during pregnancies)

Gi issues, severe d and improper digesting of foods(eek)

Insomnia is getting worse, 24 to 30 hours before I can sleep but once Im asleep I cant wake up)

ok i think thats enough...sorry lol

I have seen improvement in my tummy with immodium and vinegar with probiotics, but cant miss a day and still is quite distressing.

Florinef and zoloft help with anxiety and tremors but not much else.

and claritan and zrytec help the asthma and allergies btu not all day, also occassionally see a heart rate decrease after my zyrtec but its really not significant or consistant.

Ugh sorry about the novel, I am going to look up adies right now, any feedback is great. I know something is underlying I just dont know what direction to push my doc into....lol thx again =))

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Guest mattgreen

I have what can be described as pupillary fatigue or maybe hippus. My pupils contract and dilate invariably. A light shone directly will immediately cause contraction as normal but very soon, still under direct light they will dilate and contract wildly. This will also happen if I close my eyes briefly and then open them.

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Hi Matt, I looked into hippus and pupillary fatigue, it looks exactly the same, Im gonna ask my doc what he thinks in two weeks could just be another sign my nervous system just off I geuss, but is very wierd, I experimented with light and they are def. contracting wildly and never constricted quite enough to be normal they are always dialated too much. Just another party trick for us I guess lol

Hi Dani,

Yea its def in both eyes, i had no idea until looking it up it could be related to pots, but gonna make sure since my vision has deteriorated quite a bit since it started.......

Thank for the feedback =)))

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Guest mattgreen

Yeah, not sure what the difference is though 'pupillary fatigue' can predict AAG in patients with autonomic neuropathy (under this study's definition). Full text is available on google scholar and worth reading.

I used my brother as a control. I am certainly abnormal

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Thx Matt,

I am printing this out to take to the doctor with me, I used my mom as a control and it was a dramatic difference. I noticed outside they dont constrict properly and this could explain the sensitivity to light, I just didnt put 2 and 2 together...lol thx again!!!

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  • 3 weeks later...

I posted this a little while back....but since I have noticed that when I feel my worst my pupils act up worse. I felt pretty good last night for the first time in a while and I looked in the mirror as I washed my hands and My pupils were constricted properly and not jumpy. Also for the first time in a while. Obviously this reaction accompanys my other symptoms but I just thought it was interesting to note that its not a constant but flucuates with severity of everything else...wierd lol

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I have the same thing, this is one of the first symptoms I noticed. It is wild to watch it in the mirror. I mentioned it to my neurologist. She said it was totally normal and even wrote on my discharge papers - Hippus tonic pupil, normal activity. I disagree with her because it only happens when I am in a flare.

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Hi B and welcome to the forum =))

Its hard to believe a doctor can say this normal??!! lol baffles me what they consider normal, maybe benign but def not normal lol anyways my doc didnt pay much attention to it either and said its your autonaumic dysfunction just having fun...woo hoo <eye roll> I have been sick my whole life but honestly I dont know if it happened when I was a kid, I wouldnt have noticed and am still waiting for records....its so wierd though, I can predict how I am feeling by my eye function hour to hour...just another fun potsy party trick I guess.

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Ha ha potsy party trick. Has to be something behind it. I see you have cervicocranial syndrome? I have it also. I read about pupil dilation and it starts in the superior cervical ganglia which is in the upper portion of the neck. I think my POTS is from my cervical stenosis....so maybe it is all related. I don't know wish I had some more brain cells to figure it out though.

Thanks for the welcome!

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I agree, I have wondered if there was a relation to with my neck problems and Pots. My head/neck pain started very young and over the years with injury and car accidents has gotten quite debilitating. (My autonaumic dysfunction started when i was a toddler, chicken or the egg dilema?) I am waiting to get to a specialist (in June 13' <sighhh>) but I am curious about Chiari malformation. I have read the symptoms can be brought out by injury, I also think I may have some mcas issues, so I really am a little lost?? All my pain is generated at the base of the skull and neck but radiates...everywhere ugh. Ive tried everythng for the pain to no avail. Treating my tmj helps moderatly. Im am curious, did your issues with your neck start after injury?? and has any treatment helped manage pain?? haha I wish I had more brain cells. to figure this out..its a wonder I find my way home some days =0)

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Funny thing is I am in a neck brace right now. I had a cervical fusion for a birth defect in October. I started having all my symptoms in August and Doctors thought the symptoms could be related to my instability.....so I wasn't functioning at work very well and I thought I have to do something....so I had surgery. After surgery....I made all my symptoms worse.

I started noticing my heart rate and did some online research. I found this website and ran it by my neurologist and he sent me for a tilt table and was dx with POTS. Now that I look back I had symptoms as a child and teen. My last episode was 10 years ago and it lasted for 4 weeks. I am going on 4 months of this posy party....and I want off this ride :)

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eek...so sorry your in a brace, I am glad your past your surgery but I know it must have been so dissappointing to have the symptoms worsen after the surgery.

I fractured my neck at age 9 and was in a brace, thats when mine started. 2 car accidents later, docs say surgery or suck it up..I am phobic of surgery so...lol ugh

I think I was born with some underlying factor , have always had an overproduction of histamine ( looking at mcas) and I feel maybe the neck issues have contributed to the worsening of auto. dysf. as well as some other contributing factors. I feel like a cocktail of contributing issues that seemed to make Pots inevitable. Now, atleast its a cocktail party...haha

anyways, its all very interesting to see how we are all so different but the same...I hope you dont have to wear your brace much longer and feel better soon. This is my first full fledged "flare" ( although I was ridiculously ill as a child) as an adult and its lasted since June and Im with ya, OVER IT and ready to move on.

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i have seen my pupils constrict only sometimes esp. when i am tired but one time my bf commented on how big they were. hey, please believe I am talking abojt my pupils, not my chest! c'mon now! i broke my sternum in a car accident over 10 years ago, not my clavical, just under my throat but above my chest is constantly red, for over a year now. my cardiologist noted,,, but i was referred to an epcd. neither him or my current neuro seem to think it's anything, not to do with pots. at my worst, i felt like someone punched me really hard just above my chest yet underneath my throat, and then put a super heavy stone on the same place while I slept. when I woke up, i was sore to the touch and couldn't even move my head without hurting. is this the sensation you are describing?

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