eye pain: Has anyone else experienced... - My MSAA Community

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eye pain

goatgal profile image
11 Replies

Has anyone else experienced aching eyes and headache after eye dilation for a retinal exam? I told the clinicians that this happened on my last exam and asked them if they could use a different procedure. They were skeptical/dismissive that this could cause pain and a lasting headache. I do have a damaged optic nerve due to optic neuritis as well as a prescription for Fresnel prisms in my eyeglasses because one eye now has a focal point higher than the other (which causes a vertical distortion in the visual field). I know eye exams are important. I know I have macular degeneration and should have regular eye exams. But, almost 24 hours later, I am still angry. I finally did something I have never done before. My eyes were dilated and examined shortly after I arrived for a 9:30 appointment. I walked out at 12:15 without seeing the doctor. I hate being treated as if I am a complainer or a hysteric or a dotty elder.

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goatgal profile image
goatgal
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11 Replies
greaterexp profile image
greaterexp

I can't comment on your eye pain, other than to feel sorry that you've been going through this. I wonder if your neurologist would have an answer about the pain headache.

WAshingtongirl profile image
WAshingtongirl

I'm sorry, goatgal . ☹️🌸

Iona60 profile image
Iona60

goatgal I get eye pain regularly, but haven't had any problems with eye exams. Are you seeing a neuro opthamologist? Maybe he/she would understand and have a different procedure.

kdali profile image
kdali

LOL, guess they never heard of glaucoma! 😂😂😂🙄

I have had the eye pain and headache twice, it feels like ON, it's not unheard of after being dilated, and I am always careful to wear my sunglasses afterwards. Home care for me would be alternating Tylenol and Motrin, and using cold compresses on my eyes and head, goes away in a day or so.

I would not expect the techs in the office to have a clue about advanced medical conditions and related physical complaints. I hope you are seeing an opthomologist or neuro-optho.

goatgal profile image
goatgal in reply to kdali

kdali Your posts are always so informative; I learn from reading what you and others write. Ever since optic neuritis 30 years ago, I get eye pain that can last for a day or longer. Sometimes my vision fades/dulls at these times. Before I was diagnosed seven years ago, when I tried to explain (perhaps I don't know how to describe it to be understood) none of my doctors had any explanation...and since they couldn't help, I shut up. I didn't want to be perceived as a complainer. After I was diagnosed, I found out that eye pain can be present with optic neuritis. And when I finally found an MS neurologist, she agreed that what I experience is sometimes a ON relapse and sometimes just a pseudo exacerbation. My eyes are always light sensitive now, so much so that if I go outside even just to the mailbox, I wear a hat and for anything longer than a quick in and out, I wear my dark sunglasses. This eye pain can be triggered by heat stress, by intense lights (even sometimes indoors). And when it comes on, I don't want to use my eyes for reading or intense computer work. Thank you for sharing your experiences. I appreciate it.

kdali profile image
kdali in reply to goatgal

Thank you! I'm here to learn (or vent and make jokes no one else gets) also and have quite a bit in a short time, thanks to many generous people here 😁 Sometimes it's just nice to realize that someone out there really knows what it's like or maybe even knows how to deal with it.

My eyes do something similar with the varied vision and the pain with light you are talking about. It stinks 😞 I drove 6hrs yesterday on 5hrs sleep, with a nap in the middle and today my eyes hate me.

The last time I jogged outdoors, I got too hot and couldn't see well for a while. Did you watch the "keeping an eye on MS" from Above MS? I can't rave about it enough to people with ON!

Did you ever try coffee when your eyes hurt? Once it got to the beginning of a headache, I would trot down to Starbucks and get an espresso and sip it with my eyes closed to rest them.

goatgal profile image
goatgal

Iona60 I was seeing a neuro opthamologist until she left Los Angeles for San Diego. I am seen in the Roski Eye Institute at USC by a retinal specialist (when he is keeping his appointments). Since all my charts and MRIs are in the system at USC, and I don't hide my MS diagnosis or symptoms, I mistakenly assumed that those who treat me at least are aware of how something might affect me. I was ranting here this morning because I was still angry (and there was no other place to vent) but I am learning that I cannot make assumptions, and that I must more strongly advocate for myself. Walking out (hahaha! stumbling out/groping my way out) yesterday was a first, but I know it was the right course of action. If I had waited longer, traffic would have been heavier and more stressful. With a 25 mile freeway commute, I needed to be as alert as possible. I am so grateful for this site. Someone always responds, so I feel heard...and that's all I really desire. Listening, and saying, "uh huh, I hear you" is all the acknowledgement I need. Thank you!

Raingrrl profile image
Raingrrl in reply to goatgal

HI @goatgal. I'm sorry you went through all of that ! It is crazy that your eyes were dilated around 9:30 and you still hadn't been taken in to see the doctor by 12:15!! I just had my eye exam and only waited 10 minutes between the time the tech was finished with her part and the time the doctor came in to do the exam.

I don't have ON but do have M.S. caused nystagmus and a rare form of that. (Lucky me!) I've learned that the techs aren't familiar with nystagmus like they are with macular degeneration. So...if I need to mention it or M.S. I assume they know little to nothing about both conditions.

I'm very light and glare sensitive and wear my sun glasses most of the time I'm driving during the day. The new glasses I just got have lenses that darken in response to light and glare. Not as good as sunglasses but better than regular lenses. Never had these before so this is an experiment.

Morllyn profile image
Morllyn in reply to goatgal

You are heard goatgal . Vent away!😕🙁☹️😣😖😫😩😤

agapepilgrim profile image
agapepilgrim in reply to goatgal

@goalgal and all those talking about optic Neuritis, light sensitive, etc., etc.,, here's a funny (@jimeka and those others who like funnys can't remember your code names. lol) I am very sensitive to light also, especially fluoroscent (bad spelling but don't care). I had to go to GYN to check status of cervical cells that are suspicious (I do hope they catch them and put them in jail since they are on the watch list), you know, the kind that mut be removed for fear of the BIG C. Anway, you also know how you wait in the waiting room for an hour, then go to another room for BP, update on meds, etc., etc., from a nurse, then you go to another room for the real person you came to see, and wait another hour or so. Well, here I am lying on the stirrup bed hald undressed, on a "bed" not long enough for a 10 yr old, and this huge fluorscent light right over table shining as bright as the morning sun. First I put my arm over my eyes, until my shoulder is aching, (bursitis i shoulder), so I got up and laid my glasses on chair with my clothes, and used two hands to put pressure on eyes, started having my well known companion back spasms visit me, still no doc (about 2 hours has passed), so I just got up and turned the light off! Total darkness! Whopps, doesn't work with claustrophobia, so I opened the door a half inch, curled up in my fetal position. Then, I hear this timid knock, Miss Julia, Miss Julia, are you okay??? I wanted to say, no, I died, but knew that wouldn't work and started to say, NO, I have been waiting for you for 2 hours, I have MS and the light flared up my OP, and sitting so long flared up my cervical stenoisis and neck spurs and spondylosis, and I will have to go to therapist or acupuncure to get my neck back in shape, AND lying on this hard table has brought on back spasms even though my TENS unit is on high ------BUT being the sweet nice thing I am to the public and everyone else but my husband who is my venting station, I said, oh I am fine, I just have MS and the light was bothering me a bit! But, I am fine! (you know, how we all do to everyone who doesn't have a clue what the real symptoms of MS are). So, she said, we will just use the flood lamp here and not turn the light on." Oh, how nice, while she proceded to do what the OB/GYNs do while hangin my feet in the stirrups! And, by the way, she said the results will be back in a week. I did ask her why I have so many "viruses" in my system, and she said a few people are born with an immunosuppressied system, while others become immunosuppresed from too much life long stress! (I decided to take the latter since I have had 3 bouts of diagnosed PTSD, and cervical MRI showed my neck was broken as a tiny tot which defines as a life of pain, etc etc etc (and thi all took place without my anti-depressant that my pcp took away due to severely low sodium and has no idea about the hidden symptoms of MS! And my neurilogist took away my xanax which helped so much in stressful situations and gave me Valium for my back spasms instead and I want to say to the neurologist - do you have a clue what PTSD does to my emotions in stressful, fearful situations (like am I gonna have cervical cancer or not!). The valium to be taken at night only to help me sleep is NOT what I need to cope during the day, but since he is not a shrink he doesn't "get it!" Which one of you that said you assume doctors look at those charts and forms you fill out of your life history problems hit it on the head with a 3 penny nail!! They just say with your comordities, we aren't sure how this medicine will affect your system and I want to say, then why are you charging my insurance an astromical amount to tell me you don't know what will happen when you take this!!!! Well, gee, docs, why don't you just go get a guiena pig to try it on instead of using me for a pin cushion and popping pills, so the pharmacist doesn't tell me I an overmedicated!!! What do you think, sir, that I just go out and buy these meds on a lark and see what happens!!! Nope, I shall lie here in the dark, sooo aggravated because I didn't get to go to the MS Walk appreciation dinner with dear @Fancy1959 tonight because I was throwing up all yesterday and having chills for 24 hours and my daughter saying to my hubby, take her to ER, she is dehydrated and I say of course I am dehydrated because the pcp took away my 3 quarts of water a day due to excessive thirst for 20 years and said only 1 pint a day, but hubby went to town (20 miles) and bought electrolyte (gag!) water, 7-up, and ice cream to calm the nausea, undehydrate me (I think I just invented a new word), but still had chills all day today, and couldn't walk from weakness and no MS dinner tonight with friends. Oh, this was supposed to be a funny story about the GYN wondering if I had got mad and left the room, and thinking I was sleeping, or whatever. Which reminds me of the time I was in mental health clinic (fancy name for where crazy people are locked up and boy, could I tell some great stories from that experience). Anway I told the counselor I wasn't sleeping at night and needed something for sleep, not 4 pyschotic meds, and she said no, someone checks on you every night and you are always aleep (which, you gotta be kidding, and I snoring or something that makes you so sure), so that night, when the nurse "peeped" in door to check on me and roommate, and the room was dark, I set straight up and loudly said, hi, how you doing? and she was so startled she actually screamed! I still laugh over that one! I wrote the tinme down so I could tell the shrink the next day! WHY don't they ever believe the patient?? Same reason you don't disagree with professors - they want to believe they are little gods who know everything! And my doctors say I am a diffecult patient because I ask "why" every time they say I have this virus or that disease or some syndrome, so they can make my list of comorbidities longer? Isn't that a horrible word? First time I saw it in a report sent from one doc to another doc I thought it meant I was in a morbid codition and was headed for the morgue! lol then my Respiratory Therapist daughter explkained what it meant (I have so many health issues, the docs aren't sure what to do with me!). At my age (70), and all those comorbidities, if it would be all the same if I wasn't treated with any meds, and just let those bidities and old age and MS run their due course, and he actually said, that decision was mine, because he couldn't promise me any improvement or shortened progression of lesions. Can you believe that?? So, I came home and narrowed my meds from 12 to 4 for 20 days now, and feel no worse or better (except for the nasty nausea and chills yesterday and today, which made me realize instantly why so many of you say it is useless to make plans! Hey, with all my comorbidities, it's a flip of the coin! But, as always, I end my comedy of erros, with verification of my faith in God, trusting Him to give me peace through it all, remembering that He cares more for my soul than my body, and the flesh is but grass that in the noon day sun (and no rain here in KY) soon dieth and withereth away. THEN, I can go Home where there is no sorrow or pain, and ask Jesus how He ever endured the pain of being nailed to that cross! Guess that'd why there are so many hilarious looking animals - God likes a sense of humor in the midst of it all. Love you guys!

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I don't have eye pain. Feeling bad for what those of you that feel the pain go through. I sometimes when over tired or stressed have what appears to be a fly or bird zip through the sides of my field of vision. Nothing is there. I had MS optical tests in April & regular check up in May. All clear.

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