Persistent hairloss. So much for a social life.
September 27, 2014 11:03 AM   Subscribe

Hi all, I've been dealing with severe hair loss since the end of my Accutane course in 2010. It's now coming up on 2015 and I've lost probably 90% of my hair.

It was originally long, thick, and curly -- it's now wavy, crunchy, and dry to the point where I can no longer comb through it. (Yes, I slather conditioner on it and use shampoo rarely -- my hair shaft just doesn't really accept moisture anymore at this point.) I'm pretty much resigned to wearing a disgusting tangled bun all day just so I can go outside. (If I do comb through it, I'm left with huge clumps of hair in the shower, floor, etc...) My scalp is itchy, dry, and flaky all day long.

I've spoken to numerous doctors about this, none of which have offered more than a shrug. People have told me that it will grow back, that it's Telogen Effluvium -- which I believed at one point but now I think I'm at full-grown Alopecia. Fine. Whatever. I royally fucked up with the Accutane and I'm stuck with the consequences, I guess, but can anyone offer a sliver a hope? Anyone gone through this and come out the other end stronger or wiser or at least with a solution? I'm miserable, I don't hang out with friends or go outside anymore (except to work) and I'm on the verge of breaking up with my boyfriend because I look and feel hideous. I don't even want to have sex at this point. I'm jealous and bitter of my girlfriends with long, beautiful hair -- to the point where I don't even want to see them at this point.

Any help or insight you can offer, MeFites, I'd really appreciate -- I'm at my wit's end with this. I'm 26 and "supposed" to be at my most attractive. So much for that. I anticipate having little to no hair by next year and I'm not sure how to deal.

Please help if you can.
posted by themaskedwonder to Health & Fitness (25 answers total) 10 users marked this as a favorite
Response by poster: I forgot to mention -- I'm based in Los Angeles, if anyone has any location-specific recommendations...
posted by themaskedwonder at 11:15 AM on September 27, 2014

Can you be specific about the types of doctors you've gone to see? Have you seen a dermatologist (one who specializes in treating skin conditions, not a cosmetic dermatologist)? Because that's where I'd start.

I also think you might benefit from seeing a therapist. Not because I think there's anything bad or wrong about the way you're feeling. You're going through something really tough, and you understandably have feelings about it. But I think it might benefit you to have someone to talk to about it, to develop strategies for dealing with the issues you're facing without letting this suck all the joy out of your life. Or just having someplace you can go to rant and vent and yell and cry and feel however you're feeling without any obligation to try to placate anyone else.
posted by decathecting at 11:19 AM on September 27, 2014 [1 favorite]

Response by poster: decathecting -- I've seen a couple of endocrinologists, a gynecologist who did some hormone tests, and a couple of dermatologists. I'm seeing a new derm at USC that supposedly specializes in hair loss at the end of this month. Hopefully I can at least get a scalp biopsy and a definitive diagnosis, which is more than I've ever gotten from a doctor at his point.
posted by themaskedwonder at 11:25 AM on September 27, 2014

At this point, you just have to own it. So, shave that business off and rock it. Women with shaved heads are awesome. And if anyone asks about it, just tell them you have a medical condition if you want to share, and to mind their own business if you don't.
posted by The Michael The at 11:31 AM on September 27, 2014 [20 favorites]

I'm so sorry, that sucks. Long hair is symbolic of youth and sexuality, and its loss is one to grieve over.

Still, it sounds like your reaction to this loss is seriously interfering with your life. Not seeing friends, not going outside, thinking of breaking up with BF -- all that sounds like it's time to find a therapist or a support group.

The truth is that your beauty, desirability, and worth as a partner have nothing to do with your hair.

Please don't believe the mean voices in your head. Consider getting some help to counter the unkind and untrue things it sounds like they are telling you.
posted by ottereroticist at 11:48 AM on September 27, 2014 [15 favorites]

Maybe you need to give your scalp/hair a rest from all these treatments and medicines?

I'd go with wearing a wig rather than shaving your head though. Wigs nowadays are much higher quality than in the past and most barely look like wigs. But, like The Michael The said, you need to OWN it, so go have fun with it, try different colors and different styles that you might never have tried with your own real hair. Find a stylist who will work with you to find something flattering to your face and figure for everyday wear - something that you feel comfortable wearing- and then have fun with other wigs and styles on the weekends. If you get bored with blonde hair, you can change it to black, bored with curls? Go straight! Or if you are really against the wig idea, try hats even - maybe you could be the cool hat chick?

I'm sorry you are going through this, you are a young person and you will have to deal with your hair loss for the rest of your life, so taking it in stride, owning it, and having fun with it might be a good strategy to employ. Yes, you are so much more than your hair, but I get it, everyone wants to have nice hair, and really, a wig may be the best solution for now. Who knows? With a break from all the chemicals and medicines, maybe your own hair will grow back in time. Best of luck to you.
posted by NoraCharles at 12:07 PM on September 27, 2014 [1 favorite]

Do you have anything going on with your scalp? I ask because I've had sebborhic dematitis, which blocked my hair follicles and cause me to lose a lot of hair. After many years of dealing with this, I discovered that the ONLY thing that worked was to scrub my scalp and wash my hair with DEAD SEA SALT. (I wrote in AskMe previously about Tea Tree Oil, but that was only a band-aid solution).

Currently my hair has grown back, I'd say about 80% and the scalp issues are also reduced by about the same percentage.

If you have any of these issues, I'd suggest trying it! I order it in bulk online and it's pretty cheap.
posted by bearette at 12:16 PM on September 27, 2014 [6 favorites]

Yeah when I go out with friends I rarely spend more than a couple of seconds thinking about their hair, even if it is a rainbow mohawk. Whether you shave it off, wear hats, or wear wigs, please don't let this prevent you from doing fun things with people.
posted by steinwald at 12:18 PM on September 27, 2014 [1 favorite]

okay, so I took a quick look at your previous questions and you mentioned you'd had the Mirena IUD. do you still have it in? I just took mine out after 9 months of it because my hair was falling out like crazy. a month after taking it out, now I have tons of 1/2-inch to inch-long baby hair sticking out of my head. just a thought, in case it's not a reaction to the Accutane.

otherwise, I'd definitely check out the wig route! splurge and get something really natural looking - I hear wigs cut with bangs are harder to identify as wigs. good luck!!
posted by dynamiiiite at 12:34 PM on September 27, 2014 [8 favorites]

i am very sorry you're dealing with this. In the first floor of the Norris Cancer Hospital on USC's medical campus (I work on campus, but not there), they have a shop (this or this) containing various devices/clothes/accessories, including wigs, to help patients recreate their desired physical presentation while undergoing treatments. The people who work there are kind, compassionate, and know how to talk to people. If you decide to try a wig, or scarf, or hat, or new styling technique, as you work on getting the medical issues discovered, I'd recommend checking it out, especially because it sounds like you'll be here soon. My boss got a wig from them when she was going through chemo, and it looked precisely like her real hair-- exact same color, cut, texture (she has curly hair that she flatirons daily-- the wig was straight but had that surface wavy texture I associate with flatironed hair). Not even her kids n)oticed when she started wearing it. If you do come to USC's medical campus during the week and want to get together for a lunch or have a companion at the store, memail me.
posted by holyrood at 12:39 PM on September 27, 2014 [8 favorites]

An upside of wearing natural hair wigs is that you can style the hair and then put it on. Much better control over the final effect :)
posted by lizbunny at 1:13 PM on September 27, 2014

+1 to the suggestion to change up your birth control situation. If you're on hormonal birth control now, try stopping or switching; if you're not, consider starting. I took accutane as a teen and starting birth control pills in my early twenties reset both my skin and a couple of the lingering side effects. Pregnancy is another potential life event that you may find changes your hair - not that I'm saying get pregnant now or anything, of course, just that there's no guarantee this is lifelong. For better or for worse, women have a lot of big hormonal events in our lives and there's a chance that each of these will change our hair.
posted by town of cats at 1:42 PM on September 27, 2014

seconding dynamiiiite that it may not be the accutane. while it has a ton of awful side effects, hair loss is a very uncommon and almost always an impermanent one.

i am a couple years older than you and have hair loss as well, mostly at the crown. a product that has helped me immensely is Toppik, a sort of keratin fiber colored to match your hair. it does a remarkable job of covering the bald spots and, while not a cure-all, definitely gave me more hair style options. i've seen it at ulta here in LA.

this might lend you some self-esteem as you try to get to the source of this problem. i wish you the best, hair loss is awful for us gals.
posted by lesalvo at 1:44 PM on September 27, 2014

Yeah, I think at this point talking to a mental health person would be a good idea. This is such a shitty and stressful thing to deal with, and on top of that, you have been on / are on a number of meds that can cause depression. It would really help you to have someone to talk to about this really difficult thing you are going through.

I feel you on not wanting to have sex when you feel unsexy. It makes it surprisingly hard. I honestly don't know what to say except please get support so you don't feel like you have to be alone or like you don't have anyone to talk to who really "gets" it.

Good luck.
posted by the young rope-rider at 2:02 PM on September 27, 2014

As a drag queen I can tell you, it's possible to feel sexy as hell when you're wearing a good wig. Plus, you can 100% change your look depending on your mood. You're at a good age to go clubbing while you're rocking a pink bob.

You probably aren't bald for life. I've known people who lost a shit ton of hair because of illness or drugs they were on, and it did grow back.

Consider a punky buzzcut. Mix up your look. You're young enough that you can get away with anything. Please don't stay home feeling ugly. You are beautiful, hair or no hair.
posted by Ursula Hitler at 2:47 PM on September 27, 2014 [9 favorites]

Join a ton of celebrities and shave or crop it!
posted by DarlingBri at 4:18 PM on September 27, 2014

There's growing evidence that Platelet Rich Plasma therapy has a beneficial/rejuvenative effect on hair follicles. This woman has blogged about her experience getting the treatment. I'm not sure where in LA might offer it, but here's a clinic in Orange County.
posted by Gamel at 4:36 PM on September 27, 2014 [4 favorites]

Also, just related to what you said about hormone tests etc -- since presumably you took Accutate for hormonal acne, the underlying causes of that will also do a number on your hair. So it's definitely worth making sure that your hormones are completely balanced. Spironolactone, prescribed for PCOS, will arrest both acne and hair loss that's due to screwed up hormone levels.
posted by Gamel at 4:41 PM on September 27, 2014

I would also like to chime in to add that the Mirena made my hair fall out by the handfuls.

If you can switch birth control methods it might be really worthwhile to try going without the IUD and see if the situation improves.

But regardless, please talk to a professional about your feelings and frustrations while you tackle the potential physical causes. You don't have to handle this alone.
posted by lydhre at 5:30 PM on September 27, 2014

Why not get a wig? Then you can have exactly whatever hair you want.
posted by Jacqueline at 5:47 PM on September 27, 2014

Shave it or get a pixie cut AND get a bunch of wigs and some cute hats. By the time you get your medical situation sorted, you'll be known for your awesome hair and hats.
posted by mibo at 6:33 PM on September 27, 2014

Go get a really nice wig. Seriously, just pull the bandaid off and do it. I really don't want to minimize what is happening to you. I would be devastated also, but you have been dealing with this for years. It's time to take the bull by the horns and deal with it, not hide in your house and give up on life. This happens to women with cancer everyday. They get a scarf, they get a wig, they keep going. Keep going to doctors, but in the meantime go and buy a really expensive wig. No, it's not going to be exactly like your hair and you are going to look at yourself and go this looks fake, but that's just because you are used to seeing yourself with your hair. Any stranger on the street will have no idea that it isn't your hair.

I guarantee that within a week of getting a wig and wearing it out you will be kicking yourself that you waited this long.
posted by whoaali at 7:32 PM on September 27, 2014

A friend was treated for cancer recently and lost her hair. She wore the most wonderful wig while she was bald; you really could not tell it was a wig (she did not tell me about her treatment for a while, and I could not tell she was wearing a wig). I am definitely nthing people who say that if your hair loss is making you this despondent, that you should go out and get yourself a great wig or two.

I will add though that a dear relative lost all her hair at about your age due to medical issues. She did wear a wig for a few years, but for a long time now she has not, and wears various hats instead. She is a great person and no one thinks anything of her lack of hair; she is who she is.
posted by gudrun at 8:38 PM on September 27, 2014

Oh man, I know *exactly* what you're talking about. i started losing my hair - not as severely, but definitely noticeably - about five years ago, a combination of side effects from Implanon and genetics (my dad's side of the family all start losing their hair in their mid to late 20s, women included).

After seeing my share of shruggy, handwavey doctors I decided fuck it, I'm just going to try minoxidil (Rogaine), since it seems to be the only FDA approved treatment for hair loss and what' the worst that can happen? I tried the type that comes in a dropper, and it made my hair horribly oily, so I switched and started using the 5% foam (usually marketed to men). Oh man, it was like NIGHT AND DAY. I used to lose handfuls in the shower, and within a week of starting the 5% foam that went down to just a few strands. I've been using minoxidil for about a year now and I've got a fuzzy halo of regrowth. I just squirt a pump into my hand at night, flip my head upside down, and work the foam into my scalp. It's really no big deal and has made a huge difference to my hair.

I mention this only because people seem to dismiss minoxidil as a treatment, which seems sad to me. I'm not saying it *will* work for you (your mention of itchy, flakey, uncomfortable scalp makes me think there's something else going on - hopefully a biopsy will tell you what's up), but it did for me, and it's worth a shot. They say it takes about 16 weeks of continuous use before you start to notice a difference, so if you do decide to try minoxidil be sure to commit for a while.

Good luck with getting the help and care you need!
posted by nerdfish at 8:02 AM on September 28, 2014 [1 favorite]

Shave your head. Get some wigs, too, if you want.
posted by J. Wilson at 6:08 PM on September 28, 2014

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