I know someone who got it from Accutane and it did NOT go away after he stopped it. your doctor is clueless. just because you are overweight and used Retin A is NOT a reason to not seek a diagnosis when you have PAPILLEDEMA. you absolutely need the MRI ASAP and then the LP to confirm the diagnosis. Please get a second opinion ASAP. So probably you don't have a brain tumor but without an MRI you really don't know.

Yikes, just what I didn't want to hear. I had a CT scan that came out normal, so the doctor thought it would be okay to wait it out and see. But I agree, I at least need to get an MRI with contrast to absolutely rule out a tumor or blood clot! I'm going to try to get an appointment with a neurologist ASAP and see what they think. I haven't had migraines since last year, so I'm really just hoping it's going into remission.

OK, you didn't mention the CT in your initial post. that rules out anything obvious. an MRI is best though, although a mass lesion or clot causing ICP should show on the CT. you may not have "migraines" anymore, but you have papilledema, which is more concerning. different people have different symptoms, and the same person can have different symptoms at different times, but it is still all IIH. My point is that if you have papilledema, you should take it seriously and have a full workup. It's worth waiting a few weeks off Retin A to see if the papilledema will improve, but if not then you need treatment (Diamox, etc) and you need a workup before treatment is started.

Yes, I’ve been taking the papilledema very seriously considering I’ve been having grey spots/temporarily losing vision in my right eye for 2 months now - it’s actually why I went to the ER and got the CT scan and later to the ophthalmologist. Since my doctor visit, I’ve stopped *all* medications I’d been taking, stopped using all facial soaps, chemicals and lotions (except sunscreen) because several of them contain vitamin A, I now go to the gym daily and have been struggling but managing to stay on a 1,380 calories a day diet that’s low on salt and vitamin A. I’ve noticed I’ve felt better and that the constant head pain behind my eye seems to be going away, but who knows. Like you said, just because the pain is gone doesn’t mean I won’t still lose my eyesight or that the papilledema won’t go away. I’m just *really* hoping my next ophthalmologist visit shows I’m doing better. I haven’t experienced any of the gray spots lately, but if I do, I’ll call my doctor immediately or go to the ER if it’s gotten worse. Well aware of how serious papilledema is! Also well aware of how dangerous and damaging lumbar punctures can be if they aren’t done properly or if there’s just an unfortunate accident - my close friend had to get one for suspected miningitis several years ago and it resulted in a persistent leak of CSF that caused her a lot of grief. So, yeah, really only looking to get it performed if I have to, and to be honest, I almost certainly will just to confirm the diagnosis and see how high my CSF pressure is. I’m really just happy that my doctor thinks it’s safe enough to wait a little before getting the lumbar puncture but still find it odd that he didn’t want to refer me to the neurologist for the MRI. I was happy to get the MRI, even told him which neurologist I wanted to see, he just thought it would be okay to wait. I tried calling the neurologist to make the appointment myself, and they said I needed a referral, so might have to go to my general practice doctor (or a new one since I don’t like my usual one) to get the referral. My ophthalmologist isn’t in network (long story), so he tried but ultimately wasn’t able to order me the MRI (hospital said we need prior authorization from my insurance) so our next step was going to be finding me an in network neurologist, send him all my info, and have him order the MRI - but now he thinks we should just wait. I really like this ophthalmologist, so I’m trying to stay under his care. My insurance sucks, so it’s been pretty expensive thus far and is just going to get more expensive, I know, so going to need change it whenever I’m able to.
Would be nice if my papilledema would just clear up, but I know it probably won’t.
I probably should have mentioned these details in my original post but was feeling super tired yesterday.
Really would like to hear about other people’s experiences with Retin A and PTC but there doesn’t seem to be much info on it except academic papers which are great, I’m reading them, but would like to hear personal stories as well.

I would challenge your insurance about allowing the ophthalmologist to order the MRI. this is causing a delay in your treatment for a serious condition that is more in the ophthalmologist's alley than your GP. you should not have to downgrade care in order to get the testing you need.

Hey @outptc! I am wondering the same thing. I just got diagnosed with IIH (lumbar pressure of 30, mild papilledema, and this infernal whooshing sound on my right ear called pusatile tinnitus which was actually what started my whole journey). Before being diagnosed I was told by an ophthalmologist that I couldn’t have IIH because my weight is normal and haven’t experienced recent weight gain... well, she was wrong. The LP confirmed the high CSF pressure. I started using Retinol creams almost a year to the date my whooshing sounds started. A couple of months before I had also started taking vitamin supplements, I had been on oral contraceptives for over 10 years and just two weeks prior to my whooshing sound I changed my diet to plant-based (which has done wonders for my seasonal allergies). I read about the BC pills and the vitamin A once I found I had IIH and I immediately stopped it all. I feel helpless wondering what could have caused it and whether it will go away after quitting whatever caused it. I asked my neurologist and he said they simply don’t know. I’m on Acetazolamide (500 mg twice a day) for the past two weeks and symptoms persist so they’ll likely up my dose.... you’re not alone!

I was diagnosed with papilledema 4/30/18 and the cause was IIH! I have been on 1000 mg diamox and am now 97% healed with the papilledema. I hope you went for the MRI and the spinal tap to confirm your diagnosis because the main concern with IIH are the eyes. I am hoping to start weening off the meds at my next apt but am worried about the affects it has on my kidneys. Anyone else have this concern? Al my blood work was Normal but my CL level was slightly high at 109. The doctors said it was fine but I’m still concerned

Most doctors have actually though I was crazy when I would tell them the vitamin A would increase my blurred vision and headaches. I was diagnosed in 2012, and not too sure why but I was a little overweight but not obese. I was a engine mechanic and always moving, so I wasn’t lazy and I was in pretty good shape. But I thought it was just me needing glasses, and that how I found out. I got lumbar punctures every other week, even when I was on diamox. I know the risks, but I figured if it was going to cause a leak of CSF then it would help me, lol. But anyways. I started seeing a dermatologist for acne and I was put on all sorts of cream, including retin-a. After a month on it I noticed my vision got worse, headaches were unbearable, so I called my dermatologist and told them what was going on. Come to find out, they didn’t read through my current illnesses so they missed my IIH. Once they realized that I had it, they told me to stop all products and told me that vitamin A causes the increase of CSF. We came to the conclusion that using that stuff for my face caused the spike because it’s so close to the brain. I asked neurologist about that, and they knew nothing about that kind of reaction. I used other lotions and stuff with vitamin A and didn’t have an issue as long as I didn’t put it on my face or neck. I have tried to warn people about vitamin A and IIH, but when they ask their doctors they say that’s not true. I am glad that I’m not the only one that has been told that it increases CSF, I really thought I was just the odd one. After my shunt placement, I can now use vitamin A as much as I want, which has been a blessing. You never realize how much stuff you use everyday that has the one thing that hurts you.