mildlyinfuriating
2 different sized pupils and daily migraines update: a scan from 3 years ago proves i’m fine.
Finally got in to see a neurologist. They did a CT in the ER and no other imaging. When I saw the Dr, she put me on meds and said the scan from 3 years ago proves i’m fine.
Discussion
Nowhere has this entry said you are fine? I would imagine that MRI was done for the same indication and CT has not shown anything has changed. Continuing to scan after scan is felt by many to fuel a patients anxieties about their health. Discuss at your follow up appointment.
Google will let you believe anisocoria is a tumour or an aneurysm above and beyond any other possible benign cause. Your neurologist will be VERY well versed in those.
About 20% of the population has different sized pupils at any given time. Migraine pts are a higher number than that. Not every case of anisocoria (different pupil sizes) is worrisome and most actually aren’t. Everyone knows just enough to freak out about it because it can rarely be a life threatening aneurysm or some such but most aren’t anything concerning. I probably see 1-2 a week and maybe 1 a year is something scary.
Not saying it’s nothing but it’s often nothing.
/ophthalmologist
i hope this is the case! or like another said where it’s just a migraine symptom for them. i rationally know i’m not gonna drop dead at any second, but the paranoia of new symptoms and old scans gets to me
Most docs don’t mind ordering whatever the pt wants honestly. I warn people that an MRI might cost four figures and is unlikely to find anything worrisome. I might even say “I wouldn’t get one if I were sitting in your chair,” but I’ll still order it if pt wants it. It’ll rarely turn something up. Not never, but rarely.
We’re always playing the odds in medicine - is this worth the cost or the risk or whatever. The trouble with playing the odds is that you WILL be wrong sometimes even if you have a 99% chance of being right. You’ll actually be wrong often because we see thousands of pts a year. It doesn’t necessarily mean the doctor was an idiot (though they could be), it may simply mean that the d100 landed on a 1 today.
It doesn’t say you are “fine” these bullets are used to draw the conclusion of the plan listed below. It’s the medical decision making section of a clinician note. We reference previous studies / scans and how it guides MDM.
It's hot to hate doctors and nurses right now. Pretty wild how they were heroes 5 years ago but now get trashed constantly by the public.
This is actually normal, for your brain at least. 99.999% of migraine sufferers have normal brains.
It sucks but yeah… idk about your pupils.
What does the CT scan show?
it showed nothing, they also didn’t use contrast. not sure how big of a difference it makes. i reiterated to her my blurred vision and how bad it’s gotten since the start of the year, but its not a concern to her
There is zero need for contrast unless you want to see the vessels (like for a stroke) or a brain metastasis. Non con head ct is the standard. If that is ok, the neurologist was appropriate in not ordering a MR right off the bat and try the medications.
This must be incredibly frustrating to you. Im sorry. Any other doctor you might have access to?
thank you🥺 the other hospital networks i’ve checked are booked out neuro appts from december-january. i’ve got a bunch more calls to make, likely needing more referrals and other bs
A neuro ophthalmologist might be worth trying to see if the headaches are effecting your vision.
I was just ordered scans for brain aneurysms since my mom had multiple aneurysms rupture a month ago. Her neurosurgical team said without contrast is default for most concerns. Looked into it more and the vast majority of MRIs tend to be ordered without contrast, something like 85% of them.
I was ordered an MRI brain without contrast and an MRA brain without contrast.
Is the different size pupils a new thing?
definitely, i noticed it 3 or 4 weeks ago. they were constantly different sizes but now it only happens when i get migraines and headaches.
I've had chronic migraines since I was 14. I saw a new neurologist at 24 and she goes "do you know your pupils are different sizes?". No ma'am, I did not.
Now when I have a migraine I can't unsee it.
Definitely get it checked out but it can be a migraine symptom.
Also she only redid my scans to check to see if it was safe to do a lumbar puncture to test for something else. Otherwise she wouldn't have redone them.
The different neuros I saw at 18 and 20 didn't redo my scans that I had at 14
that is absolutely insane. i’m hoping it’s like your case, it just being a migraine symptom. but it’s crazy how hard you have to advocate for yourself in order for anyone to take you seriously… it’s a specialty. nobody’s there for something your primary care doctor can just throw pills at
Don't listen to your highly trained specialist that reviewed your history, images, and examined you. Reddit knows best.
Hey! I have had different sized pupils since I was around 18, and started experiencing daily migraines. I get Aura Migraines which heavily impair my vision, my hearing and also affects my limbs/hands sometimes. I also experienced lots of deja-vu's. My migraines are often triggered by lighting hitting from an upper right angle, my right eye also always has the bigger pupil. I would get multiple migraines a day on extra stressful days or days I had higher caffeīne intake. I walked around with this shit for years untill I had an "episode" while driving. No accident or anything, it just scared me when I realised I couldn't see any traffic on the other side of the road because of my blind spots caused by the eye migraine.
I had multiple scans done over the years but there was nothing out of the ordinary to see.
What helped for me was Candesartan. I started on Metoprolol but that gave me bad side effects. I had Candesartan daily for 3 years and would only get a migraine once a month or two, and after a while they got even less frequent. I now quit Candesartan 3 months ago and have only had a migraine once.
Sorry if this is naive, Have you seen an ophthalmologist? I had a similar situation for a few months and it was an inflammatory condition where my pupil was caught and could no longer dilate properly and had fused in the wrong place. I had to essentially “break” that with a few weeks of extreme dilation drops and heavy anti inflammatory drops.
Iritis. Usually presents with pain/light sensitivity/blurry vision. Not often that the pupil size difference is what brings those patients into the office, but not unheard of.
Ophtho referral is a good idea but I’m biased because I’m an ophthalmologist
That’s it! Couldn’t remember the name.
ohh okay, glad they were able to catch that! i do have an appointment with one soon, this was just the first appointment i’ve had since the ER visit in my last post
Have you seen an opthalmologist OR had a lumbar puncture?
I have increased intracranial pressure, and larged ventricals, and have migraines ( well did) and now I take 50mg of topirimate BD (twice daily) If you are a woman of childbearing age you HAVE to be on contraception that is BOMB proof.
It's just a thought because sometimes with intracranial pressure doesn't show up on CTs, mine only did because I was born with enlarged ventricles.
Also, if you do have intracranial hypertension - it's worth knowing you would more than likely have paplideoma, which is swelling on your optic nerve - this is why I mention opthalmology.
Obviously this could be a reach but it's something to keep in mind.
Hi I’m one of the people who responded to your original post (med student, not a doctor, don’t take my word as law). Glad you’re doing ok for the most part and nothing emergent was found on CT.
A few things I wanted to mention: a CT (in the words of an attending neurologist I worked with) is a “poor man’s MRI.” It’s a quick and dirty way (with emphasis on quick, which is why the ER loves it so much) to image the brain to look for acute bleeds, obvious abscesses/tumors, or swelling. It’s not very good at identifying smaller bits of inflammation. As an example, CT can often miss subtle white matter lesions in multiple sclerosis, whereas they light up on MRI. MRI is the gold standard for neuroimaging, but it’s much slower, more expensive, and typically not done in the ER setting. The ED docs did their due diligence with a quick CT scan to rule out immediate life threatening concerns followed by a neuro referral.
If your neurologist did a thorough neurological exam and wasn’t concerned, then it’s likely benign. Anisocoria that’s not associated with any major pathology is a thing in some people. I will say that to claim your MRI 3 years ago being normal “proves” you’re fine now is…a bit too much imo. It proves you were fine 3 years ago, but 3 years ago isn’t today. Ultimately though as long as there’s low concern for the symptoms being from a bleed or mass, it’s probably nothing life-threatening to worry about. Those are the main 2 things to rule out and the CT pretty much did that.
Just wanted to comment and say I am also on Toprimate and experienced a huge improvement once I began taking it daily. My headaches are often triggered by hormones, so I was trying to only take it during certain phases of my cycle. Once I just started taking it every day, I had significantly fewer headaches and also less severe.
I didn't even realize people took it only as needed, it's a daily med I take and I was warned I'll need to wean off it too (but that's at 100mg)
i wanted to add: i seriously appreciated all the concern and support i received on my last post about it. i didn’t get the chance to reply to everybody as much as i wanted to.
my dr also said after doing 3 months of medicine she’d consider botox injections, she did diagnose me with migraines. but that’s the plan for treatment for now.
Hey, I wrote to my neurologist today about huge improvements. I was set to receive anti cgrp, but that's not looking neccessary.
I cut out chocolate, I massively reduced lactose, started going to the gym, started TRT, and supplement methylene blue.
Methylene blue is worth trying for sure.
Anyway, in that combo of changes, something very positive occured.
I also have an asymptomatic brain tumor, so get a lot of MRIs etc.
I thought for a sec that was a job offer requirement lol
Have they checked your inner ear? That can contribute to migraines if it’s a nerve issue. Kind of makes me wonder because nausea and blurred vision is a symptom of inner ear problems.
Have you been investigated for Idiopathic Intracranial Hypertension (IIH) usually diagnosed with lumbar puncture? Swollen optic nerves are a big symptom of this and would show on a routine eye exam by an optician or opthalmologist. Causes extreme headaches. Maybe worth looking into. X
Hey OP, been in nearly the exact situation you are currently in. I can’t and won’t offer medical advice but I can talk about what I went through!
I was diagnosed with “atypical migraines” and had nearly the same suggestions/care as you have had. Topiramate was not a good drug for me— I forgot to eat most of the time and lost about twenty lbs. The side effects were not worth it either. I ended up getting switched to a monthly injectable called Aimovig which was much nicer to my body. The neurologist gave me a coupon card that allowed me to get the drug for free at the time. However my insurance stopped covering it after a year so I stopped. I also ended up getting surgery for my deviated septum after they discovered one of my nostrils was doing about 80% of the work.
Years later due to other bodily symptoms I discovered I had a hormonal imbalance. I ended up getting prescribed spironolactone, and I have felt much more alert and non-migrainey since.
oof… topiramate. that’s a hell of a drug. good luck & godspeed
Oh crap. Why do you say that?
Hi, been on Topiramate.. it changes the way carbohydrates taste. Beer.. bread, noodles… carbonation… nothing. I wasn’t told this when I was on it for Menieres Disease during Covid. I kept testing thinking I had Covid when really my taste was altered.
Also BRAIN ZAPS/Fog! I’d be in the middle of sentences and Poof there goes my intelligence.
Interesting. I have been on it for a little over a year and all I've noticed is I can't taste carbonation. Everything is flat. Doesn't bother me much because I really don't drink soda or beer anyway. As far as brain fog...is that a known side effect? This happens to me, but figured it was just where I'm at in life.
In that case the payment you made 3 years ago should be fine too. 🤣
FOR REAL LMAO
yeahhhh modern medicine.. thanks doc, i could have told myself that in the mirror.
Stuff like this is why I dont even bother getting seen for my migraines, let alone get with neurology. What, wait 2 years and $$$$ to be told I am fine? No thanks.
It WaS fInE tHeN, tHoUgH
It's crazy seeing this.. I've had a headache/migraine 24/7 for about 4 years, like from the moment I wake until I sleep. I took so much paracetamol/ibuprofen to try and ease it I found out I've damaged my kidneys. I haven't had a scan for a couple of years but when I did they didn't find anything at all and said they think it's long covid.
Either way, I've given up going back. I'm convinced that if it was something more sinister, I've had it so long the damage has probably been done now. I might look into botox now just to try and take the edge off.
I have this issue from a brain aneurysm causing third nerve cranial palsy. Please message me if you have any questions about imaging and what questions to ask for answers. Could be nothint of course but it takes a lot of advocating to find out. I had a 16mm brain aneurysm it took two surgeries with coils/stents but I'm finally "okay" for now.
Here for whatever you need to know!
I hope this isn’t the case but you most likely have a Cyst building up in your Brain, I commented on your last post but I don’t think you read it
The doctor said your fine but also put you on meds? Hm somethings off
They have migraines. What is the dr supposed to do, pay them on the head and say “there there”?
she did diagnose me with migraines. but ordered no imaging of any sorts… idk. i commented her treatment plan and im just too paranoid to agree with it.
Referencing a previous MRI is normal as a comparison against present ones, but that's not what they're doing. If you have new symptoms that could be neurologically triggered your Dr needs to order a brain MRI with and without contrast and maybe an MRA. I went through this with symptoms later deemed idiopathic but you have to rule out nefarious possibilities with imaging. If there are no new symptoms then I'm guessing they're treating your condition as status quo and thus no new imaging.
that’s what i was thinking… definitely gonna try to make a bunch of calls to get some peace of mind
Sending good vibes. Maybe this will make you feel better, maybe not; but it's almost certainly idiopathic or just variation on your existing migraines. Either way you 100% need to get the imaging if only for peace of mind .
thank you 🫶🥺 i’m slowly learning how to advocate for myself. seems this will be good practice haha
Sadly self advocating for medicine takes a certain amount of experience in medicine itself. Very useful if you have relatives in the field to bounce thoughts off of .
In my experience, advocating for myself gets worse treatment. They treat me suspiciously. Heaven forbid you know anything medical, must be a drug seeker.
Depends on the individual dr and your relationship with them, I’ve gone into my family doctor multiple times with prescription requests for specific medications. Each and every time though I also explain the reasoning for wanting it, how I think it would help me like mechanism of action and then list off a few side effects that I say I’ll make sure to look out for.
Approach it in a very friendly way being sure to pose it as a question like “I’ve looked into xxx drug for my (condition or issue) and it seems in my opinion to be something that could really help me what would you think about that” and your likely to have success.
Of course this isn’t going to work if your asking for like morphine for your neck ache but if it’s something that could help you a good doctor will at least discuss with you why it’s not something they’d recommend.
I never even request drugs and actually specifically ask for no opiates if they are going to as I don't like feeling high as balls with a migraine
Migraines are my issue too! Look into Ajovy in combination with Botox it took me from 15+ migraine days a month chronic migraine to like 4 or 5 it’s been a life saver! Insurance was a lil difficult though
Also intranasal lidocaine flushes! Weird but my neurologist prescribed it and it worked!
Had that happen a few times.
Went in with a list of stuff that felt "off" or "wrong" and what I think could be going on.
Got told I was "being coached" or that I should "stop googling stuff" or they would pull bloodwork and check for drug abuse first before testing anything else or my favorite response from them..."It's anxiety take your meds!".
I've only had one ER doc who saw my chart and didn't immediately write me off AND then actually ordered a CT to check for stuff like masses/tumors etc without me even suggesting that.
Funny enough apparently a bunch of patients kept staring INTO the CT emitter/laser thing, so folks were required to put on these BIG sun glasses things, and the nurse got a chuckle out of my response to those being to rattle off various MIB quotes whenever someone asked me a question.
I agree. I had complicated migraines that started after a car accident many years ago and presented with one pupil dilated & leg weakness. There were other neurologic symptoms also. There are no changes for about 20 years. After menopause, the migraines resolved.
About five years ago, I had an MRI that showed a small brain aneurysm had developed. It was stable, but after a few years I started having pulsatile tinnitus on the side of the aneurysm. As a result of updated technology and worsening symptoms, it was recommended I have an aneurysm flow diverter placed…did that & it solved the pulsating “woosh” sounds. I developed other problems as a result of being on blood thinners. (I had a skiing accident and brain hemorrhage. I am still recovering but quite well. )
That was a long way of saying another MRI sounds reasonable. It’s better to know than to keep guessing. Certain migraine types have recently been shown to cause some small amount of brain damage with each occurrence.
I wish you well!
My daughter at 3 had aneurysms clipped and coiled. They bled twice but we were lucky she had a shunt that diverted the blood away for the first one and an EVD on the second one when she coded.
The aneurysms were caused by a sub arachnoid cyst from birth which lead into a stroke during the surgery and 9 years before two more strokes got her. I wish I had pushed for an MRI at birth and hate myself for not doing it.
Such a heartbreaking experience to go through. So sorry to hear this. I am an RN with a specialty certification in brain and spinal cord injuries, just retired this year at the age of 70. When I hear about the little ones like your daughter, I swear it feels as though they are my own, but I know nothing compares to what the parent goes through. 😢. You sound like a wonderful parent…I hope your heart heals. You take care.💕
I have to have a full brain MRI every few years to monitor things as well. Fun times.
I have those types of migraines. I have to have scans every year or so to make sure the damage doesn’t progress too much. Luckily my new meds have stalled the evil brain demons so figures crossed they continue. It’s already caused mild aphasia and balance issues, I don’t need anything worse lol.
I hope you continue to do well. It’s really tough having neurologic symptoms. A tiny thing can put the simplest body function at risk. You take care of yourself.💕
Quick question since you seem to know what you're talking about.
If you had a TBI quite a while ago, well over 10 years, would that show up on an MRI or would the brain have healed over any kind of damage, making the scan appear normal...despite certain effects from said TBI still being present?
Not a Dr and you should consult with one, but it depends on timing and severity. Generally the adult brain isn't big on healing and more works to rewire itself with surviving structure. If your TBI is severe enough it'll show up forever. If it was minor or from a long time ago it might not show up.
In which case a doctor would consider the damaged brain structures to be "baseline" and might not even think that anything was wrong, despite symptoms saying otherwise.
sighs
Thank you for the response.
It's not as naive as that, there's an understanding of normalcy. It's true that if your TBI didn't alter your MRI much vs a "normal" brain a neuro-radiologist might not be able to tell, but it's also true that the resulting structure might differ from expectation.