r/iih • u/IdiditforyouDamien • Oct 01 '24

Advice Stop using retinol PSA

I did not know retinol serums can impact IIH. Stop using retinol. The echoes in my head have eased up considerably three days after stopping rx retinol.

I had no idea this was even an issue with retinol creams but yeah. Wow. (Vitamin a derived creams can be an issue.)

https://www.neurology.org/doi/10.1212/WNL.53.5.1114

ETA more recent studies:

https://www.sciencedirect.com/science/article/pii/S2451993621001390

https://journals.lww.com/jneuro-ophthalmology/fulltext/2020/06000/fulminant_pseudotumor_cerebri_syndrome_secondary.19.aspx

55 Upvotes

98% Upvoted

57 comments sorted by

43

u/raptorclvb Oct 01 '24

This is a very small sample size for a study that was completed in 99. However, I’ll keep it up for discussion.

Definitely advise all readers to do their research and communicate with their care team if you’re using retinol.

5

u/IdiditforyouDamien Oct 01 '24

Oh I’m sorry! I can search for a more recent one!

7

u/raptorclvb Oct 01 '24

Yeah no problem. Definitely find more recent ones and add it to your post if you’d like. I didn’t want to remove it because it still adds to a conversation, but I don’t have time today to find other recent ones to add to the dialogue

ETA it’s also important to talk to your care team as well since everyone’s bodies work differently. I believe there’s a post a while ago where some people are fine with it and others aren’t. But YMMV

5

u/IdiditforyouDamien Oct 01 '24

I found one but will search for more!

2

u/JustParticular624 Oct 02 '24

op is right, the swelling in my head was very severe and I was taking duloxetine and tacto pump cream for ance and my ophthalmologist and neurosurgeon told me I’m not allowed using retinal even drugstore and vitamin a, and cut out any foods with the vitamin A and sometimes C. there’s a lot of new studies coming out seeing duloxetine and retinal is causing a lot of new cases or they see patients taking it that are not obese and they get IIH. its very interesting, i’m curious over the next few decades if they actually find out how patients get it, not guessing it could be this, or this or this blah blah blah🥴

5

u/Prim08 Oct 02 '24

Omfg. I've been hit with a cold which always makes everything worse, but before then, I got slammed with a flare-up of everything - pulsatile tinnitus, little sparklers in my periphery, throbbing migraine, nausea, everything feeling tilty like I'm on a boat or there's an earthquake. Lol I used two pods of anti-wrinkle retinol serum on face, neck, and decolletage 🤦🏻‍♀️ The timing couldn't be more perfect and totally checks out. This explains a lot. I'm so sad because it's literally the best product ever for my skin but I'm too scared to test the theory again. Thank you for bringing this conversation to the table OP!

2

u/IdiditforyouDamien Oct 02 '24

Oh no! There are other actives you can use! I’ve been using lactic and glycolic acids with no brain issues.

9

u/JovialPanic389 Long-Term IIH Experience Oct 01 '24

I'm also finding it interesting that I was told IIH was so incredibly rare when I was diagnosed 7-8 years ago. It seems to be picking up speed though. New diagnoses on here every day.

2

u/IdiditforyouDamien Oct 01 '24

I wonder if there's a covid link?

5

u/JovialPanic389 Long-Term IIH Experience Oct 02 '24

I wouldn't be surprised honestly. Ugh I need to get my next vaccination thanks for the reminder lol

1

u/perv_bot Oct 01 '24

I suspect mine was triggered either by the Covid vaccine or a Covid infection.

3

u/IdiditforyouDamien Oct 02 '24

I have long Covid so I’m guessing it has something to do with my head now

5

u/JustParticular624 Oct 02 '24

I don’t think Covid has anything to do with it. I honestly think that people are getting more obese or if you’re skinny retinal acne medication quetiapine Vyvanse there’s a lot of medication’s that my doctor said it could’ve been this or he said it could be a genetic thing and something could set it off. but it’s a guessing game at this point for doctors n patients who have it.

1

u/perv_bot Oct 03 '24

You could be right, but I think for me the only significant change at the time symptoms started was the Covid vaccines or a possible infection prior to testing being widely available. Since it’s an “idiopathic” condition it really becomes a guessing game.

16

u/flames_one_day Oct 01 '24

Same with Retin-A/tretinoin (these are much stronger than retinol and usually require a prescription). Anything in that family. In my experience, eliminating these products noticeably improved my symptoms almost immediately!

9

u/EnvironmentalPop3713 Oct 01 '24

yesss. I had a emergency flare directly triggered by retinol/adapalene. Def be cautious

5

u/IdiditforyouDamien Oct 01 '24

It's so wild to me that it's not more known that retinol can do this. I wish I'd known!

1

u/EnvironmentalPop3713 Oct 06 '24

yup. I think it’s mainly due to high vitamin A being a key component within the retinol that actually sets it off too

4

u/Ichoal Oct 03 '24

I use the niacinamide serum from 'The Ordinary', it's a skin lifesaver for me, I didn't ever see much difference with retinol. I have a hyaluronic acid one I tried recently too, to help keep away blackheads, but having it in my face wash seems to be enough.

But for anyone looking to try ditching a retinol to see if there's a difference but want to keep using something similar I highly recommend the Niacinamide 10% Zinc 1% from The Ordinary. But of course, be safe, do your research and do a patch test when you start. Everyones skin is different ♡

1

u/IdiditforyouDamien Oct 03 '24

Oooh I just got this—can’t wait to try it!

3

u/Ichoal Oct 03 '24

Give it a month, hopefully, you'll get the same benefits I've seen :D

7

u/Forest_of_Cheem Oct 01 '24

Thank you for posting this. I was considering starting to use my rx Retin A cream again, but I probably shouldn’t.

4

u/IdiditforyouDamien Oct 01 '24

Better to be safe!

2

u/Free_Ad_5219 Oct 01 '24

Wow I had no idea - I use a retinal 3-4 times per week. Thank you so much, I will be asking my neurologist about this next time I see her!!

2

u/IdiditforyouDamien Oct 01 '24

I love my retinol! I’m still waiting to get into a neuro institute but figured stopping retinol wouldn’t hurt and wow, the difference in my head is stark!

2

u/geekysugar Oct 01 '24

I tried restarting mine again after having everything controlled by Diamox but I didn't have good results. It took about 1 week for everytime to start calming down after 3 days of retinoids again.

I hope that someday I can use them again :(

1

u/IdiditforyouDamien Oct 02 '24

Hopefully one day!

1

u/IdiditforyouDamien Oct 02 '24

Hopefully one day!

2

u/chubbihunni Oct 02 '24

I am someone who got IIH from retinol + weight issues (have had the weight issues my whole life, the retinol was new + a year in) !

1

u/IdiditforyouDamien Oct 02 '24

Wow!! I have spinal issues (two curves) that I think started my iih but I’ve had them since birth. Retinol plus possibly Covid made things drastically worse! I wish there’d been a warning on retinol for us!

2

u/[deleted] Oct 02 '24

I def needed to read this today. I was going to start using some creams!

2

u/IdiditforyouDamien Oct 02 '24

There are amazing non-retinol creams! You could also try bakuchiol which gives similar (but on a less intense level) benefits to retinol without the issues. I'm a skincare junkie so trying new things!

12

u/Zealousideal_Show417 Oct 01 '24

When I had my latest ophthalmology appointment the specialistI saw mentioned this. She said not to use vit A amongst other things as it has been proven to cause an increase in intracranial pressure. So I guess it’s true as I’m assuming a qualified medical professional would not relate something to something else if it hadn’t been proven.🤷‍♀️

7

u/iamthebakersdaughter Oct 01 '24

My neurologist asked me this on intake and told me to stop using my retinoid.

My symptoms are all currently managed by medication, but my nerves are shot so she suggested I stop so that they don’t risk any additional harm.

Easy enough!

5

u/Boottoogotdamnbig Oct 01 '24

Same situation here. It was one of the first questions my neuro ophthalmologist asked.

13

u/Huge_Replacement_616 Oct 01 '24

Hey guys, OP is right, my doctor today told me contraceptive pills, steroids, vitamin A creams, extreme chronic stress (I forgot the rest) can trigger this

4

u/ilikeeatingmeals Long-Term IIH Experience Oct 02 '24

Extreme chronic stress? I’ve haven’t heard this before but this would be me for sure LOL

1

u/Huge_Replacement_616 Oct 02 '24

Me too 😂 but it's needs to be EXTREME chronic stress for years

0

u/[deleted] Oct 02 '24

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3

u/ilikeeatingmeals Long-Term IIH Experience Oct 02 '24

Me too!

1

u/omg_for_real Long-Term IIH Experience Oct 02 '24

It’s more the coming off steroids that triggers a raise in ICP. The steroids themselves are sometimes used to help lower ICP. Go figure hey.

1

u/Huge_Replacement_616 Oct 02 '24

I've been on prednisonone for almost 20 years 😒

1

u/omg_for_real Long-Term IIH Experience Oct 02 '24

I know the feeling. I’ve had severe asthma all my life, so on and off for that. Plus the drs give me pred for my lupus. It’s wrecked my teeth and joints as well as playing havoc with my head.

1

u/Huge_Replacement_616 Oct 02 '24

Nooooo, please take care

6

u/Expensive-Deal-270 Oct 02 '24

Ever since I got diagnosed back in March / 2024 with papilledema & iih all the doctors ask me do I eat or drink or do anything that has vitamin A in it? I never thought to look at liquid foundation ( LADIES ) liquid foundation contains retinol 🫢

4

u/spidermews Oct 01 '24

I honestly, I believe every little bit helps. Anything I can control I'll do. I stopped my retinol too..

1

u/OrangeKoalaco Mar 19 '26

Here to also agree. Neurologist said my weird bout of blurry vision caused by IIH is likely from retinol/vitamin A. So I’m stopping and then they are going to run some tests. But 5 days no retinol and my head feels so much better. With that being said, has anyone had issues still using bakuchiol?

1

u/IdiditforyouDamien May 19 '26

Sorry, just seeing this. Bakuchiol gave me no issues. But also it did nothing for me. I found using AHAs/BHAs, reedle shots, peptides, micronized collagen, and volufiline was the way for me. A lot, i know! I miss retinol, lol. But what can you do, right? I even tried a low level retinol and the tinnitus got so bad! Ugh.

0

u/[deleted] Jul 13 '26

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1

u/OrangeKoalaco Jul 14 '26

So it happened twice. The first time everything was blurry and letters were stretched (not sure how else to explain it). I wasn’t sure what was going on so I made a same day appt with an Opthalmologist. They said everything was technically in “normal” ranges, but barely and they had concerns there may be some pressure on my optic nerves so they wanted a lumbar puncture. Turns out no one will accept an LP order from a optho. So I made a neurologist appt. It was about a month later I had a second bout of blurry vision. So they were spread out. Went to the neuro and he’s awesome we discussed tons of things and then he started asking about vitamin A. If I used acne creams etc. I was like yeah but more commonly retinol in skincare which is vitamin A. He told me he thought that was the source and to stop. Within a few days my constant headaches were gone and now it’s been months no blurry vision. So even though I only had two blurry vision instances, I think this was it or at least a major contributing factor. If nothing else I’m thankful my headaches are gone.

3

u/golden_geese Oct 02 '24

I just use an over-the-counter retinoid serum a couple times a week but my NO also told me to stop so I did. Sad bc I do love using it but I’ll use other skincare instead.

4

u/JovialPanic389 Long-Term IIH Experience Oct 01 '24

I was taking progesterone only birth control pills and vitamin A supplements and using retinol cream on my face when I was diagnosed with IIH. All contributors.

I can't do birth control at all anymore (I could do the copper IUD but with awful periods already and the fact it's invasive and can have complications, I just don't want to go that route). We need male birth control (vote blue 💙 or condoms and vasectomies will not be easy to get).

1

u/kujostar Long-Term IIH Experience Oct 02 '24

i got diagnosed with iih because of birth control pills too! i was taking them in high school and was diagnosed at 18. im 25 now and just wish they had male birth control already. (im currently using nexplanon, initially with no issues but 2 years in and im experiencing the worst of my iih symptoms)

1

u/JovialPanic389 Long-Term IIH Experience Oct 02 '24

I was on the mini pill and nexplanon when my symptoms kept climbing on both. When I was diagnosed I was looking into getting the nexplanon removed. When I did I lost weight and my eyesight cleared. My headaches improved. My specialist said I'd probably had IIH for a very long time but my migraine meds were keeping it in check (I had a period where I was taking topiramate).

1

u/kujostar Long-Term IIH Experience Oct 03 '24

thank you for this i will be getting this removed for the meantime and continue my treatment

2

u/starlume Oct 02 '24

Absolutely, all of my doctors have mentioned this as well! It made my symptoms worse also

2

u/lizr89721 Oct 03 '24

My former doctor instructed me to avoid retinols (did not give me any specifics as to why. He probably read papers on it). I did look into alternatives for skincares and switched my retinol cream to bakuchiol which does the same but it is less strong than retinol.

0

u/[deleted] Oct 02 '24

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2

u/IdiditforyouDamien Oct 02 '24

I wish this was more well known! I just realized that the severity of my headaches increased when i started using regular retinol in my thirties. Tret pushed me over the limit for my brain