Hi could you do an update? I'm going through something similar and am wondering how things have changed/hopefully improved for you. I'm sure everyone else would like to kno too.
Did the derm that was supposed to be an expert give you any good advice?

Has anyone heard from BrokenPorEcelain?

She was so determined to find a solution to this problem. I am really curious as to whether or not she was ever able to recover?

Holy shit. Its like I'm reading my own thoughts. Been messing with my barrier for some years in HS (starting around 12 thanks to a mother who was bothered my some pimples on my forehead) with some problems that left some scarring but nothing major, then got tretinoin around 21 I believe. 23 now and the effects are monstrous.

I can't even leave the house. My skin is so inflamed and burns. Pockmarks and acne appearing in places I never used too have it in.

Going all in on supplements and moisturizers. I hate this but its comforting to know I'm not going insane even though my family members may think I am.

Very sad to see that all the users here in this thread haven't posted in a long time and ended on sad posts. I hope they all found peace.

Posted by: @brokenporecelain

12 hours ago, deutschegrammophon said:

I'm sorry this happened to you and others. I went through a similar ordeal. I woke up one day and was very conscious of my skin, particularly open pores and a general tired appearance. If anything caused them it was probably exfoliation but at the time I wasn't really bothered as much as I was by acne, which I believed would scar me horribly and had already caused my face to collapse. I thought my mouth had folded in on itself and that my cheeks had lost all definition. I realised that that had not happened, but my obsession with my skin kept me inspecting it and feeling sick at every defect that I discovered. I think much of what I saw was cumulative, and did not appear spontaneously. I believed in my heart that I would never be the same, and that conviction seems to have rewired my brain such that I treated my skin as belonging to somebody else and incapable of returning to form, whatever that was. I really sympathise with your commitment to fixing your skin and not acquiescing to to mediocrity. I think you are brave in a way, but also foolish. You likely have researched enough to know that you are experiencing something for which medicine is not prepared, yet you insist on declaring your misery on this website as if something will happen. I assume you look in the mirror all the time, which I understand, but I would do you disservice not to tell you that you are wasting your life and reinforcing an unhealthy thought pattern. It almost seems redolent of my own psychotic episode. I don't know how much this interferes with education or work but clearly this has obliterated your social life. In any event you need to wait, either for medicine to catch up to your ailment or for your problem to correct itself. I think you are right that your life revolves around your skin - I don't doubt that. You must change your behaviour so that your brain learns a different way of being happy. I recommend that you stop looking in the mirror, look after your skin as minimalistically as possible, and channel your energy into something that isn't so fickle and which yields reward in a fair way. You don't have to worry about your skin, or be guilty that you ruined your own life. Please try and get over this , because the more you think about it the more real the problem becomes. I don't deny that something bizarre did physically happen to you, but since you are young you have time to live life differently. In the meantime your problem will resolve, I promise, either by becoming insignificant to you or by actually being fixable. You have to become capable of waiting and then wait, and obsessing over this, looking in the mirror, researching online, and the withdrawing is going to make that really hard. I know you hate this but its all I got.

 

Hey...I want to thank you, first, for your sympathy(?) and compliments(?) and I am VERY sorry for your own troubles....but at the same time, I can't really get a grasp on whether you are telling me to get over it -or rather- that any of us here have a right to feel the way we feel.

You kind of went back and forth and basically encompassed your thoughts in eloquent vocabulary...yet what you seem to really be getting at is quite the opposite..??

I'm a little confused.

(I have a bad taste in my mouth after reading your comment is what I am trying to say.)

What you describe for yourself, was it a true issue or was what you are describing strictly psychological?

Because if the latter is the case, then your feelings towards the issue and how I should handle it really don't apply.

The mental distress is but a symptom of the physical issue here, not the other way around.

So Did you ever heal physically... if it was a truly tangible problem?

Did you not even have any real problem but rather this was actually a genuine case of something like BDD?

Or did you, in fact, have a real issue going on but someone (maybe yourself) convinced you that you were crazy or that you had BDD? And now you have gotten by this whole time by ignoring the reality and expect others to do the same?

(I'm honestly curious because you didn't exactly make it clear, by the end).

I actually don't look in the mirror much...I mainly do avoid it, but that's not going to make it go away. Ignorance cannot be bliss in this situation.

And everything I see exists, I'm not seeing things. I know my face, and it's obvious that my reaction to this cream has caused a drastic change in the skin and that-I am guessing-the dehydration and prolonged inflammation have caused other changes to my physical features, that cause me not to be able to recognize myself. I won't even post the worst of the photos on here because it is too debilitating to even look at on my own. The pics I posted are bad enough, but the full face ones I have now show a completely different person than what I looked like before this happened. In the worst way possible.

One of the PA's I went to early on whom I showed a 'before picture' to even asked, "that's you???"

And another asked me if I was seriously ill, as in I looked physically sick and under the weather to her.

There's nothing fickle about my feelings OR this ordeal either....I have been absolutely steadfast in my stance and I will absolutely never get over it.

Unless it physically removes itself from my face.

That isn't even up for discussion any longer as far as I'm concerned.

I've made it abundantly clear.

If others can adapt to this nightmarish change....that's their prerogative, not mine.

I've already lost one of my most precious aspects of my physical appearance, and I'm not going to adapt and alter my personality to match this loss.

I refuse.

And there's nothing wrong with that.

Nothing foolish either.

The only truly foolish thing that I have done is use this cream in the first place.

Declaring my misery?

Damn right I am declaring my misery.

What else is there for me to do right now?

And I believe it's important to state EXACTLY how I'm feeling, and not sugar coat it, so that others who are having similar feelings, will realize that they are not alone, that it is normal, that they don't have to snuff out their own lament just because others dismiss and trivialize their concerns.

My friend, whom I mentioned above, actually thanked me for making this thread...that was her last post....she believed it was necessary and important for others to see the risks and as I read the tail end of your post, I feel a push to go contact her...for an understanding ear....but she is not here any longer.

And her feelings were not fickle, and she was certainly no fool.

Nor am I.

Perhaps we are just different people than You.

I know in my last post, I said that I hope people find something that resonates with them here, no matter their issue, but I didn't mean that as an invitation to project your opinions and feelings onto my own situation, which, seems to differ quite greatly from yours.

I think your comment started off well-meaning, and even drew similarities to my own situation, but then you kind of flip flopped a bit and by the end of it, I was thoroughly offended.

(Sorry if I am misunderstanding....)

If this issue never resolves, and swallows me up past the point of no return, then I will have the inevitable decision to make.

And I can tell you, it won't be the one you suggest.

I actually do care about myself and who I am and I will not allow myself to go through life this miserable, and without the skin I knew and loved.

And actually worked damn hard to sustain and protect.

I think it would shock people, the problems I would trade for this one.

But that's just me, that's just who I am,

And I'm not going to change.

I'm not wasting my life by hiding away, I'm protecting myself, and besides...I have no authentic, confident life to live unless my skin goes back to normal, otherwise I will have to become a Robot, a Zombie, an inhuman being who just "exists" but does not "live".

I am already unrecognizable on the outside, I do not wish the same to be said for the inside. I would rather put myself "on hold" than grow a new identity to cope with this Hell. So that's what I am doing right now.

My life doesn't revolve solely around my skin, it's just that it is too big a piece of the puzzle that is me, to go on living without. Nothing can replace it. Not now, not ever.

Plenty of people have things they love in life, many things (some of which mean nothing to others), and life does not revolve around them, but rather they are significant cogs in the wheels of the machine that keeps us moving, and we don't notice their importance until they are gone, or until they are damaged, and our whole range of motion ceases without their fully functioning parts.

So only when THIS happens, do I have to focus all my attention on the damaged 'cog', otherwise I would be pushing along a broken vehicle, until more and more parts fell off and stopped working.

So I've got to stop. Got to pause.

This is not strictly a "psychotic episode" as you suggested you experienced...this is a physical dilemma that simply frustrates the human mind until it breaks down.

Which is pretty understandable, from my point of view.

So I've got a broken down vehicle right now..it can't move until the damaged part is fixed.

Simple as that.

No other way around it.

...also you said...the more I think about this the more "real" it becomes?????!!!

It is REAL.

Wth.

That's like suggesting to the human race to ignore the Sun,

"don't think about the sun guys, that will only make it feel more real! That light that's emanating from the sky? That's just your imagination silly~~~!!"

I mean....Seriously?

And 'Since I am young I have time to live life differently???'

No I don't!

Since I am young, I am losing precious time, I have no time, I am constantly trying to get this fixed so that I don't lose anymore of my youth!

I wish this would have happened in my much later years, so that I could look back and at least know I lived my life, looking like myself, and being myself in return.

This problem will NEVER become insignificant to me,

It's my FACE.

So no amount of time will change that.

And if time does actually heal my skin, physically, then withdrawing and researching and all that is all I can do.

It seems you don't understand.

Going out and ACTING like nothing is wrong and trying to ignore this issue is HARDER than "obsessing" over it. That would cause me way more undue stress than I could handle and if there is a chance at physical healing, I don't want to jeopardize that by pushing my mental limits and ending up having a panic attack or a more extreme mental breakdown that lands me in a position where, the physical resolution to my problem becomes even more out of reach.

I'm keeping myself as safe as I can right now, I know myself, and I know how I have to go about things.

This might legitimately be the worst comment to be preserved on the internet. Our faces are on fire, and scarring yet you're saying to get over it.

Gonna use this thread as a place to post what I'm doing since I became cognizant of how much damage has come from tretinoin + "professional" microneedling, and all around bad dermatology advice for years. A lot of similar symptoms as OP here.

I'm a 23 yo White male, 5'7", 130~ lbs. Fair skinned (that means pale, right?), and green eyes (just adding that as my eyes were already prone to sun sensitivity).

Pretty much in a nightmare situation with all the damage done to my face by derms. Eczema + Crepe-y skin + Atopic hair loss + Numbness + Dry eyes + Sun sensitivity + inflammation + easily scar atrophically + numb forehead/temples. Oh boy, the nightmare never ends.

Supplements: Fish oil pills, MCT Oil, Probiotic coconut water, Zinc, HA pills, collagen powder (2x a week), pharma gaba (for stress/anxiety) and CBD Oil/Asgwagandha (for stress as well). Probiotics. Just added ivermectin 6 mg (likely for short term), and looking to get topical soolantra soon. Also just added activated charcoal and Boron. Probably some other stuff I'm forgetting.

Lifestyle: Cutting out sugar/dairy/maybe carbs soon. Eating healthy fats and whatnot. Humidifier at night. Trying to sleep well but its tough. Gonna try to figure out a workout that won't burn my skin. Hats and soon prescription sunglasses all the time if I'm outside. Sardines everyday, avocados, sweet potatoes with coconut oil... eye drops in morning and eye gel at night. Silk pillows sheets. Sleeping on back.

Skincare: HA and Cerave Baby Cream. Trying out Hada Lobo plumping cream. SPF in the morning. Coal Tar shampoo once a week. Some seb derm safe conditioner occasionally. Lightly oil beard/hair/face with MCT oil, 30 minutes before showering 2/3 times a week. Lotrimin Ultra on some acne under beard (actually works pretty well I think, but not 100% certain). Only using microfiber cloths to LIGHTLY exfoliate flakes.

Never drink or smoke so not a problem for me.

Gonna try to see a dry eye specialist soon. Should also get some blood work done and whatnot.

Tested for allergies not long ago and was negative for everything.

Seeing an acupuncturist bi-weekly.

Who knows how much longer I'll be able live with this, but f it, not gonna throw in the towel yet. F Albert Kligman.

So it's been over a week since that last post and I've modified it a bit as I've done a lot of research since then and learned what can help my situation, and what's likely not.

For stress, I no longer use CBD oil and Ashwagandha. The Pharma Gaba tablets work great for anxiety by themselves.

For other supplements, I've added Theracurmin, and will be adding MSM powder. I have been using Vit D3. I don't plan on continuing Boron and Activated Charcoal. Also, I started drinking Chamomile tea, nightly.

In two days, I'll be specifically starting an AIP diet. This diet is a lot more specific than just cutting out dairy/sugar/gluten.

Coal tar shampoo Ill be doing every 3rd day as my hair needs it. I plan on also spraying my scalp with a very diluted ACV concoction before hopping in the shower, on the days I use the coal tar shampoo. I'm also using Pantene Conditioner Daily Moisture Renewal on these days after the coal tar shampoo. MCT oil might be causing me flare-ups but I'm not 100% certain, so I'll be dropping it temporarily to see.

Ivermectin 6 mg pills Ill be taking once a week for the next 2 months, and I'm also using a very, VERY light amount of ivermectin topical on my face every other day.

For moisturizing, I dropped the cerave baby cream and the HA tonic for now, and am only using Hada Lobo plumping cream. I lightly pat it on my face while it's damp immediately after a shower.

I weighed myself and I'm a healthy weight for my height, but I do plan on losing a little bit of weight as I feel bloated. I also need to get back into doing light workouts and doing walks. I used to be a machine but I just can't in the state my skin is in.

Silk pillow sheets are a lot better than cotton. A lot less abrasive on my very sensitive skin.

For the eyes, eye gel and eye drops weren't really helpful. Feel like they just irritated me more. I've been doing cold compresses daily, not sure if it helps. Will be seeing an Opthamatologist in two weeks.

Still thinking about who to see for the other damage. I'm done with dermatologists, they've caused me enough pain with their apathy, and ignorance.

A lot of changes but thats what happens when I research and find out what works, and what probably doesn't. I'm fortunate to have a good support system and a little bit of cash. Can't afford to do any procedures but I've heard good things about hyperbaric chambers (I think they're called?). Acupuncturist I won't be seeing much longer. 1st session was great, 2nd eh, going to do one more to see if it's worth continuing for the foreseeable future.

Only thing I'm guaranteed to be sticking with so far is the Pharma Gaba tablets, and the nightly warm mist humidifier.

More research led to some changes.

Skincare routine: Rotating ivermectin with a anti fungal cream every other night. Taking Doxy 100mg once a day. Added squalane oil into my routine with the Cerave baby cream. I think I was sensitive to the urea in the Hada Lobo.

Supplements: Added Sea Buckthorn Oil, Chlorella, and Quercetin. If I add anything else, it would be CoQ10, debating it. Don't plan on continuing theracurmin once I finish the bottle.

Diet: Doing an AIP elimination/Low histamine diet. Gonna fast at least one day a week, and only eat from 12-9. Also drinking Tumeric tea as well as chamomile daily.

Seeing a opthamologist next week. Already know I'm dealing with MGD, maybe Ocular rosacea. Also, dropped the acupuncturist.

Lowering inflammation, boosting my immune system, and repairing my skin barrier are my goals atm.

Only things I'm guaranteed to be sticking with for the future is Pharma Gaba, the humidifier, and Vit D3.

Extremely hard to get my mind off things. My mental state isn't great. I think its reasonable to understand why. This is also a mental battle so I'll try my best.

Also, I've been trying to compare my situation to Broken Porcelain/Trazadont (her username on reddit). I'm guessing her Tazorac was a lot harsher than my .025 tretinoin but I was on it longer than just her two uses.

She also went on Accutane, and I didn't. I assume this is why her skin produced no oil at all, while mine does. Thank God. One positive in my situation I guess.

Afaik she never fasted, and she admittedly was a little overweight. I'm a healthy weight, and will be fasting routinely. She seemed extremely adverse on taking a holistic approach to this, and kept seeing derms/doctors. Derms have just caused more damage so I'm done with them.

Not sure if she ever treated it from an autoimmune disease point of view. Don't believe she did.

Very glad she journaled all she did. Her doing that is why I'm writing out everything I'm doing.

Posted by: @Mazo

Wasn't planning on coming back for a bit but going to write a quick update.

So I'm coming around to learn that the facial burning could be MCAS from a Covid infection I had in December. Absolutely insane. The user Sara Rey might've been onto something. Fortunately (unfortunate to have it) because of Covid, there are a lot of people dealing with this issue (minus the scarring and horrific skin texture).

Scarring continues, I've been getting a decent chunk of pockmarks and texture issues from just small pimples. Sucks. My diet is basically chicken and broccoli. I'm avoiding histamine essentially.

So my current goals are to find my (presumably) MCAS triggers, and stop my acne. I think this all comes from the gut. Haven't taken any tests but wouldn't be shocked if SIBO is the root of most, if not, all my issues.

Also, for the dry eyes, Optimel Manuka Honey Gel has become a helpful staple for me.

I've toyed around with my regime a lot and I'll post my thoughts at the end of the month.

This was just me coping. I was really hoping that MCAS would be the reason. Got some bloodwork done, and outside of my cholesterol, everything is in range, or barely out of it. Ugh...

I should mention that a derm had me on epiduo forte in my teens. Which I have since learned is in the retinoid family, and probably contributed to the severity of the damage as well.

My life is over because of some damn skin creams that were never necessary.

Figured it's time I post another update. Shit has me really down ngl, but I feel it behooves me to stay alive, and at least fight for a success story. This is the hardest thing I've ever gone through by far. If it wasn't for the easy scarring I'd be a hell of a lot less anxious about this, that adds a horrifying layer to this nightmare.

Supplements: Sea buckthorn oil, Vit D3 + K2, Magnesium, collagen, proline, lysine, iron, zinc, pumpkin seed oil, omega 3, MSM, Vit C, Silica, and Chlorella. I dropped pharma gaba as my anxiety has been alright, and now I just take melatonin 1mg to help sleep through this shit. Probably adding choline and white mushroom jelly.

Diet: I'll be honest I haven't been consistent with this. I get depressed so I eat like crap. Going to get on the wagon again and eat good. Looking at a low Vitamin A diet. Rice, beans, and protein might be the way to go. Debating on doing a multi-day water fast for autophagy.

Skincare: Briotech HoCl spray is the only thing I used in the morning outside of rinsing my face. Kinda wondering if rinsing my face with distilled water will help idk. At night, immediately after a cold shower, I layer on CosRx Snail 96 essence, and Squalane Oil on top of that. I have rosehip oil that I will add, and I'm going to trial La Roche Posay Cicaplast Baume. Also, I have Psoria Gold (the sensitive skin product) coming in that I will use at night as well as the morning if it isn't too bad.

Not really skincare related but my eyes have gotten a lot better since I started using the Optimel manuka Honey at night, and some HoCl eye spray in the morning (and blinking exercises :)). Might end up doing Manuka Honey masks for my face with how much better my eyes have been.

For hair, pre-shower I've been massaging in a mixture of castor oil and rosemary oil twice a week. I also use shampoo + conditioner soap bars rather than a liquid. I do use a tea tree shampoo once a week.

Humidifier I use nightly.

Haven't been doing much exercise, nor has my sleeping routine been good. Gotta get on that. At least the sleeping portion lol.

I have a red light panel coming in. Not some cheap mystery garbage from Amazon. I've heard some microneedling-damage success stories with it. I gotta try whatever I can. I don't think anyone on this forum post ever tried it.

It's surreal to read forum posts from almost a decade ago of people dealing with what I'm dealing with now. Some people were talking on forums about this bs when I wasn't even a teen yet! And here I am. I also see brokenporcelain was posting on other forums as well about this situation. Horrifying. I'm literally retracing their footsteps. When I think I've discovered something, I see they were already discussing it.

I came across a reddit user named nikgurl64. I see they were associated with rosacea topics not even a year ago, but they have since deleted their account. I'm trying to come into contact with them as it could be the same one that posted in this thread.

Some ideas/topics/theories I've been researching are TEWL, Apoptosis/ph-Kinase (cell death), Vit A Toxicity (been lurking on the ggenereux forum), peptides, and gut health.

I've been trying to find internal reasons as to why I'm having a bad time with this, but I'm not coping. I'm certain this situation was brought on by the retinoid usage + microneedling damage.

@harleez84 messaged you

@mazo hello! I am here experiencing the same symptoms as you and OP for the past 2.5 years. Just wanted to discuss it. ESP if the ivermectin helped you.

@mazo Yes, after doing research all over it seems this reaction has SOMETHING to do with Rosacea and I have Rosacea. I think Retinol & Rosacae skin is a no no. But of course, instead of doctors and scientists researching anything of value they spend their time researching silly mess. So we are all sitting around here on forums basically unable to connect the dots, but I do see some similarities.

yes I easily scar. I got a cystic acne pimple from using tret less than even 10 times over the course of like a month. That 1 cycstic acne pimple is now the site of my scarring, on my nose. It was 2.5 years ago and it keeps getting worse. I didnt know much about rosacea before but now I know I have it, my nose flairs pretty badly. After all this time, I have no clue whats the trigger and nothing consistently helps. The scars do continue to scar more and spread. I refer to them at this point as collapsed pores, and yes they do make lines that join together. Since its on my nose, its a tricky part of the skin and cant be handled like regular skin. Like for example, if it was a cheek it could be filled with filler for a solution. But instead its just some weird rolling scars that just get worse. 2.5 years later its much worse than even the initial aftermath of the cystic acne! Sometimes the pores get clogged and I think washing it makes it worse, trying to use products to clear the pores make the scars worse- tbh It seems that the pore clogs are the only thing holding the pores up at this point, because if the clog is removed; the whole pore sinks in and boom another scar. Its spread, its grown, they are just big open scarred pores. Im back on here because I dont even know what I did - like I said anything will make it worse and its just looks extra henious now. With these collapsed pores, Id hate to run into an ex or even ex friend.

@bluebubbles Sorry to hear you're in this nightmare. I wish I could tell you I'm cured but I'm not :/. Sucks we have to go on obscure internet forums to find anyone else talking about this.

Rosacea is such a weird thing because derms seem to use that diagnosis to explain any inflammation on the face. I didn't get diagnosed with it but I did have a seb derm diagnosis which could explain some things.

I've been able to reduce the overall redness of my face, but the pore issue is still there. And yes, if the pimple is big enough, there seems to be a rolling look to it if you look at it from the right angle. This side effect is literally just reserved for my forehead/temples which were the only places I used retinoids. My forehead has a raised/scaly/fungal acne look to it (if you look at it close enough), and I'm wondering that if I can get that to go away, will the texture fix itself?

I've been on a strict anti-inflammatory ketovore diet for about 3 weeks now (I've been trying for months to kick my sugar addiction, and I've finally done it). I also do intermittent fasting daily (16:8), and occassionally a 24-72 hr (sometimes more) fast.

I do 20 mins of red light every other day. And I use urea cream + Cosrx snail essence + sulfur cream (once a week) + mct oil (an hr before every shower). I also take lukewarm - cold showers.

I have a bunch of supplements that I've stopped using but I still use a quality fish oil, Injuv, Vitamin C, and Magnesium.

Now that its getting cold, I'm going to start using my humidifier nightly again.

My scars have become softer. My overall texture has gotten better (as long as you don't look up close and see all the fine lines). And face less red, and puffy. My skin has become thicker I think (in a good way). Also my acne heals a hell of a lot faster than it did a year ago.

My nose does become very red though in the cold. And I think my face is sensitive to the sun as well.

As for the ivermectin - I dropped it. Didn't use it long.