Constant dizziness, disorientation after wearing contacts

I've gotten every test under the sun. I've done Lymes, every infectious disease in thailand, vitamin panel, caloric test for the inner ear, got checked for BPPV, no migraine in my family or history of it, so that didn't make sense. Had a clean MRI on brain and neck...

My dizziness is light and is less during the evenings...

I was also wearing the wrong lenses...I'm 3.25 in one eye and 3.50 in the other, and I wore both in the both eyes because I ran out of my 3.25.

hi yes all of my scans mri whatever all clear but has been there since my 30s now 56. As I said Plaquenil keeps it away which is great. But if I miss it it is back pretty quickly. Not sure what else to suggest you are doing all the right things. Hope you find something which helps.

have you been to a dizzy clinic where they do caloric testing ect. and then a physical test to check your eye responses to stimuli spinning slowly. then water in your ears. its awful. however, it can rule in or out vestibular issues. if you havent, then you havent had all testing. look up dizzy clinic in the major city near you. look up otolaryngologist or nuero-ontolgy. a regular nuerologist a regular ENT is not generally equipt to diagnose properly. just because you have no family hx of migraines doesnt mean you dont have migraines yourself. you could have silent migraines too. so dont disregard this. i was misdiagnosed 2x before being properly diagnosed with vestibular migraines. for me, this came out of nowhere. i was fine one day, the next i wasnt. i am better now but only because i kept going to different doctors until i found the otolaryngologist. i am on medication now to reset my brain. the neurologist, useless. told me i might be disabled forever. no testing ordered. the ENT- very nice she was the one who got the appt for me to the otolaryngologist. saved my life. i was on the path of losing everything, including my mind.

I'd be very surprised if you managed to get away without experiencing visually induced vertigo symptoms given that you used a lens that was the wrong prescription for one of your eyes, especially when your two prescriptions are so close. Your brain would've had huge problems making sense of the altered information it was receiving, which would almost certainly have triggered some kind of vertigo. I really don't think you need to look any further for a diagnosis here.

hi there! i have gotten the caloric test done and all normal. so he was thinking vestibular migraines...i was on notriypline and it made me feel horrible so i got off of it. thats why i disagreed but maybe i do?? i dont feel like im going to fall or anything but something in my head doesnt feel right and my eyes. things look strange sometimes especially during the day. slight disorientation and spaced out feeling. makes me feel very slow. i feel this feeling 24/7, excpet at night it lessens a lot. i worry because i move to LA and medical school in two months so ive been a wreck. my life feels like everything is going wrong. focusing on peoples faces is difficult too because i start feeling weird sensations

also what symptoms did you have and did your medicafions help??

Hi Brian, i have an appt with an opthamologist today.

So you dont think that could be the case? sorry i didnt understand your answer very well.

i also have slight nystgmus on my left eye...especially with fast stimuli. my eyes feel strained when objects move closer to my face as well

Hi Stufon, I think your dizziness was almost certainly triggered initially by using the wrong contact lens in one of your eyes.

I would recommend that you have your eyes tested as soon as possible, and have new glasses made using your new prescription. Once you've got the new glasses you should give yourself time for your brain to adjust to them, and possibly expect some initial dizziness. I think you would also be well advised to steer clear of contacts for a while, but if you feel you can't do without them, make absolutely sure they are made to your current prescription, and NEVER wear them in the wrong eye.

I don't think your dizziness is due to anything more sinister than becoming intolerant to glasses or lenses that aren't exactly right for you.

Also, most importantly DON'T allow yourself to become too fixated or anxious about your dizziness, because once you do, it will be much harder to shift.

How long ago did this start? I am 10 months in, doesn't look like go away anytime soon. I started taking 0.5mg pizotifen, a migraine drug. 3 days in, no change - only more tiredness as a side effect. I am only 28 but I feel like i can't do anything fun anymore

maybe you do have VM just like me. i am on norotryptiline and i have had great success. but not everyone responds to that med. there are several different ones that they use when one doesnt respond to noro or amitryptiline. i recently read a couple medical studies both said that VM- is the second leading cause of vertigo ect, only after BPPV. so why is this so difficult to diagnose then. doctors should be immediately looking into this. for me, i was so sick, slow mo, brain fog, visual vertigo, full vertigo that ended up in hospital 2x unbalanced, falling. afraid in grocery stores, which was bizarre. but, not one doctor had mentioned this VM- to me. it wasnt u til i started reading stories on this site that things started to click. i realized i was always looking for tylenol. i realized that in the morning, i would be semi ok. but after a few hours of reading, my eye would droop, i would get a headache. i realized when i was admitted and barely consious they kept asking me if i had a headache, yes, they put an eye mask on me. i asked the ENT -to give me a script for anything that treats VM- she did. and it worked. she then sent me to the otolaryngologist, i had the testing and i had no vestibular damage. so it was a definite VM. maybe you should listen to the doctor about this diagnosis. my doctor did tell me i have been very lucky to respond to the first med we tried. my eyes would feel like one was drooping. sometimes i could see it in the mirror. sometimes no. i too would feel spacey, have a hard time coming up with regular words. not understanding people during a conversation. i seriously recommend that you go back to that doctor and ask to try another med. i have been on noro since aug. im at 60mg. every few months i get an increase and every time another symptom goes away. its a long process. my doctor told me- these meds are necessary to reset your brain. try to pay attention to what your triggers are. light, noise, food, stress, lack of sleep ect. mine are def lights and noise. stress. my eyes felt strange all the time. wrong, like looking at something but it wasnt me looking, things would move. my eyes hurt. i did vestibular PT- i couldnt even follow simple instructions. i had difficulty getting dressed. i had difficulty reading, i would get dizzy if i just moved my eye or eyes. moved my heck, bent down. i stopped turning my head. i had so much tension in my neck because i was using it to hold my head still. i was working full time throughout this. i thought i would lose everything. i could drive in my car but couldnt be a passenger. little by little these things have gone. noise is still there. loud noises cause me trouble. i recently had to do visual vertigo exercises. purposely watch things to make myself sick so my mind fixes itself. i thank God that someone here posted something that made it all click. i also am so lucky that i found a doctor who knew immediately what was wrong. i dont know how long you were on the norotryptiline, but it can take time to kick in. thats why my doctor waits 2-3 months to increase my dosage. and i am ok with that because i am living my life. with school coming up, i really suggest you try it again. i went on webmd and couldnt believe i had every single symptom. i even had numbness in my right hand. that is my aura. do you have an aura?

Hi again,

thank you for the reply. I don't really have aura's. I looked it up and I don't have flashing lights or anything in my visuals. The only symptoms I have are occasional dizziness throughout the day and it feels like my vision is off, I don't know if one eye sees better than the other? I get spaced out about 4-5 times a day, and brain fog. I feel slow a lot. In the beginning I was a lot worst (very extreme dizzy spells, I was crying a lot, depressed, stayed in bed because I was afraid of going outside), and lately it has calmed down. I used to feel very overwhelmed in grocery stores, where I'd get extremely nauseated, because of the shelves and items, and people everywhere and it calmed down a lot as well. Now it's a subtle dizziness, where inside my head, it doesn't feel very sound or grounded if you know what I mean? It's an occasional disoriented feeling where, once I feel it I get extremely spacey and I have to stop what Im doing for a sec. Peoples faces feel off, where I can't get a whole clear picture of their face, things can look fuzzy/unclear so I struggle with that a lot and it makes me nervous so I forget what I want to say. I can drive and be a passenger, and I'm pretty functional on a daily basis, but those symptoms make me feel fairly uncomfortable so quality of life isn't at its best 😦

The only thing that makes me nervous about my doctor is he isn't sure. I didn't mention my contact lense situation until yesterday and then he was unsure and recommended I see a opthalmologist. But his stance is mild VM, some sort of inflammation in my brain. I was also perscribed topomax and I heard horrible things about it.

3 months I've been feeling off. I'd give the drug a couple weeks to kick in. I heard it takes a little while. Hang in there

Hi Brian,

I think so too, because it wasn't just a coincidence, as it happened 4-5 times during my trip of 10 days after putting them in. Only thing that's weird is even after not wearing them for two months, my vision and dizziness is still there. I wonder if it messed up one of my eyes. But I'll be checked today.

I may take an antidepressant to calm myself down a bit as well, so anxiety doesn't take over like it has been.

I will definitely never do that again. I learned a painfully hard lesson these past 2-3 months.

Hi Stufon, I won't take up space boring you with a potted history of my symptoms - that happens way too much on this site and isn't usually very helpful to the person who needs answers about their own health worry. But very briefly, I've developed a dizziness that seemed to begin as a result of my failing to adapt to my first pair of varifocals. Although I've had go back to single vision specs now, it's left me with dizziness that's very easily triggered by any visual input that the balance processing centre of my brain can't quite make sense of.

So attempting to wear any other glasses, including reading or computer glasses, sends my head into an almost instant spin, which doesn't subside for hours after I've taken off the glasses and rested my eyes and can lead to very uncomfortable nausea. I think you may have developed something similar, as you don't appear to be experiencing any other significant symptoms. It's not nice, but it's not life threatening in any way either.

Hope this helps.

Hi Brian,

That kind of sounds like what i have...sometimes the feeling can feel a little stronger at times but its constant subtle dizziness that hasnt left. Have you noticed your symptoms calming down and feeling any relief? How long have you had this for?

Im really worried because its hard for me to think, i feel so slow because of the symtoms. And i start medical school very soon so its just a bummer im dealing with this..

hi brian,

just saw a opthalmologist. she didnt see anything? nothing wrong with the nerves. maybe its best i just go to a regular optometrist just to get glasses contacts prescriptions?

Hi Stufon, it's encouraging that the optometrist didn't find anything organically wrong but I don't rthink we expected that they would.

I think it's imperative that you get an eye test with an good experienced optician who's results you can trust, then that you get glasses/contacts made with the new prescription. Given that you're 25 I'm guessing that you'll only need single vision lenses which is good, as varifocals present the brain's visual cortex with a far more complex problem to get used to, and would be far more likely to produce dizziness and nausea, given that you're balance system seems to be very sensitive to unexpected changes to visual input. However you do have quite a strong prescription so it's very important that you're wearing exactly the right lenses.

You'll need to allow time for your vision to settle down, and to be prepared for it to take quite a while, as in medical terms your balance system appears to have been thrown considerably out of whack, and will undoubtedly now very sensitive to change.

After around two years of specialist consultations, the diagnosis I've been given for my problem is PPPD. From my research (and I've had time to do a lot!) the diagnosis is probably accurate, and it has come after a consultation at the London College Hospital wit a Prof. Adolpho Bernstein, who's one of the leading authorities on balance problems in the UK.

I would urge you to read up on PPPD and really try to understand how and why it might occur after someone has had visual problems. I'll be happy to give you more info on it but it'll be just as easy for you to look it up, and as you're about to go to med college, I'd say you've got a very good chance of grasping the concept!

PPPD was only officially registered as an illness in 1998, so many doctors, even ENT and neuro specialists are unfamiliar with it in my experience.

I'm using nortryptiline at the moment as I find it helps with the nausea I experience, however I can get by on 10mg a day, which is a lower dose than is usually prescribed and as it raises my heart rate by around 15 bpm I'm determined not to take a higher dose.

From my research all of the drugs offered for conditions related to balance and dizziness act to suppress the action of either the vestibular system or the central balance cortex, so despite what people may tell you, there isn't a drug that'll 'rewire your brain' and make everything magically return to normal.

Hope this all helps, please let me know if you need more info.

Hi Brian. Interesting that Prof Bernstein diagnosed you with PPPD. I was also given this by someone he works with, Dr Seemungal. However, I saw a well known balance doctor called Dr Surenthiran who said I have a migraine variant balance disorder, and he also said pppd was not a proper diagnosis. So confusing and annoying that all of these experts cannot just have one, simple diagnosis!

Hi brian,

okay thank you! ill be seeing an optometrist today for new lenses. and i looked up PPPD,it does sound like me a bit. because i do have sensitivity of my brain. another thing i didnt mention is im hypersensitive to fast movement. my eyes cant track it as well as it used to. it now becomes a blur if things move quickly, my eyes dont keep up. is that related to it or maybe something else. its really weird and throws me off

what medication??🙏 I'm going through the same thing?