Hair Loss and Depression
April 16, 2012 6:40 AM   Subscribe

I'm a 24-year-old female with severe hair loss from Accutane, and it's only getting worse. How do I get past this, emotionally and practically?

The details:

I started on Accutane at age 21, my junior year of college. My dermatologist explained to me that I might have dry hair and some hair loss, but that it would return to normal as soon as I stopped treatment. I finished a six-month course of Accutane; a few months after that, my hair began falling out in huge clumps in the shower. Two and a half-years later, I have lost over half of my hair and it is still falling out at an alarming rate. It has dried out completely and does not hold moisture at all -- it has become limp, dull, and lifeless. My scalp is visible in some parts, and it is dry, and itchy. I see tiny bits of hair growth, but the hair is weak and breaks off at about the 2-inch mark. (It's also pretty curly, so I can somewhat hide the bald patches.)

I am afraid to comb it, and I can barely take a shower any more without crying halfway through.

I saw another dermatologist as soon as my hair began to fall out, and he told me that I have Telogen Effluvium. From what I understand of the disorder, it's supposed to be temporary and only lasts about six months until after the inciting incident (in my case, the Accutane) has been removed. But when I saw the same doctor six months later, when my hair was still falling out, he told me the condition may be permanent, and that all of the hair on my head was essentially "dead" -- so it's only a matter of time before it all falls out.

My acne was severe, and in many ways I became more confident and outgoing in the months I was on the medicine due to the fact that, for the first time since middle school, I didn't have gigantic cysts on my face anymore. I started dating, having sex, and looking people in the eye. I just didn't realize that the tradeoff would be like this, and now I'm having trouble coping with the fact that I won't ever be beautiful. I feel like a freak. (Who loses her hair at 24?)

I am embarrassed and ashamed to tell my boyfriend (my very first one) for fear that he'd leave me. I am incredibly distraught over this. Is there ANYTHING at all I can do about it?

Other notes about me that may be relevant:

- I'm bipolar II, and currently taking medication for this. (Recent.)
- I am currently on birth control. (Also recent.)
- I recently got blood tests done, and nothing is wrong (except that I have low Vitamin D3 levels - I'm now taking about 1000 IU of D3 to hopefully make up for it.) My mother does have a thyroid disease though and suffered hair loss, so I get that checked regularly, too.
- I take fish oil tablets, a hair vitamin, and b12.
- I use natural hair products without parabens, petroleum, or sulfates.
- I am willing to do almost anything to get my hair back to normal, including try Rogaine -- I've heard that it irritates the scalp, and that once you start using it you can't stop because the hair growth will stop also. Is this correct?

What would you recommend, MeFites? I want to attack this on two fronts: I want to be able to deal emotionally, and also find practical solutions to the problem. I can't hide from it any more.

(One more thing: Please let's not get into a debate about the harmful effects of Accutane, or lectures about what I should have researched or done before I decided to take the medicine. I'm obviously already beating myself up for that, so thanks.)

posted by anonymous to Clothing, Beauty, & Fashion (18 answers total) 8 users marked this as a favorite
I'm so sorry that you're going through this; please don't be ashamed. Your hair loss is not your fault and you will still be beautiful no matter what. I recently saw this and was humbled by her grace and strength. Her wigs also look amazing. Wigs are an option. Many women wear them; you can take inspiration from everybody from Beyonce to Adele to Lana Del Ray. You are not your hair.
posted by 200burritos at 6:54 AM on April 16, 2012 [1 favorite]

- I'm bipolar II, and currently taking medication for this. (Recent.)
- I am currently on birth control. (Also recent.)

These two items are also notable. Some psychiatric meds have a side effect of hairloss, as do some birth control pills. These two could be compounding the issue; when you last spoke with your dermatologist, were these brought up? Also, were hairloss concerns brought up with the doc(s) that prescribed the bipolar meds & BC pills?
posted by kellyblah at 6:54 AM on April 16, 2012 [3 favorites]

I went through stress-induced alopecea and was surprised at how unnerving it was to suddenly lose fistfuls of hair at a time. It made me confront the amount of weight placed on a woman's hair. I feel for you!

Emotionally, I had to own the facts. It took facing myself in the mirror more than once with bright lights. I would generally do it either right after a shower or putting makeup on. Sometimes it was emotional, sometimes I mugged and grinned and tried to see a "whole self" through the haze of my worry about the hair loss. This worked quite well, because I was able to see that my face was what really expressed "me" to the world, not my hair. It helped minimise the shock a LOT.

Practically, I tried a few things and ultimately found that I enjoyed headgear (including wigs) for social occasions and appreciated going without around trusted friends and even at work.

I think the most freeing thing I ever did regarding the alopecea was when it came back a few years later. Instead of headgear and half-measures, I flat out shaved my head, played up my jewelry and makeup, and implemeneted headgear when it made sense (hats for sun were the most common). If it ever happens again, that'll be my M.O.

One thing that I'm not sure is a good suggestion or not: I tried Nioxin early on, and it did seem to bring new little hairs into the blank spots, but I wasn't observant enough throughout to see if it had really made a difference.

OH! And consider head massages - soothing and increases blood flow, which certainly can't hurt and may help normalise having others in contact.
posted by batmonkey at 7:11 AM on April 16, 2012

Have you checked your serum ferritin levels? There is some evidence of a link between hair loss in women and low ferritin, although it's not uncontested.

I found it to be true for me. It's not checked in the standard battery of tests and my doctor did not mention it, I learnt of it from my own research. The test cost maybe $75 out of pocket as my insurance didn't cover it.

It took me several months of daily Slow FE before my hair stopped falling out, but ferritin takes a long time to build back up so I'm still taking it over a year later.
posted by Dragonness at 7:15 AM on April 16, 2012 [4 favorites]

Oh my, what an awful thing to go through. I don't think anybody would "get into a debate about the harmful effects of Accutane" here -- as is clear from previous threads, lots on MeFi, myself included, have taken it and loudly sung its praises. Everybody knows it's a big deal with big potential side effects; everybody feels the gamble is worth it. Nobody expects permanent hair loss, though... This isn't your fault.

You should tell the boyfriend -- the whole point of having a partner is having a partner, and on the very off chance he can't deal with it, what a terrific thing to find out as soon as possible so you can be free of him. But it is hard to imagine a decent adult doing anything but saying "I'm so sorry, tell me what I can do to help."

I would be looking for second opinions, both from another dermatologist, and a GP who can assess all the medications you're taking.

Sometimes these 'Who [has X happen] at [young age]?!' do happen to young people. My coping strategy for mine is to be extremely grateful that I am not dealing with anything lethal or potentially lethal. I have hassles, not things that must be terrifying to a degree I can't imagine. People will feel sympathy for your hair loss, but they will not be awake at night crying for you. This is good.
posted by kmennie at 7:25 AM on April 16, 2012 [2 favorites]

First of all, I'm very sorry to hear that you've been hit so hard with the side effects of Accutane. You have my deepest sympathies. I did two six-month bouts myself in high school. In addition to not curing my acne, the medication left me with permanent problems with dry eyes and skin. I can't wear contacts, have to use eye drops multiple times a day, and have to plan showers so that my skin has time to dry out again so that I can apply lotion before going out. (Otherwise it'll be a flakey mess).

But enough about Accutane. What did your dermatologist say about the other medication you've been taking? Is it possible that the hair loss is some sort of adverse reaction to the bipolar medication or your birth control (or both)?

I'm sure there will be better suggestions and advice down thread, but here is what I can offer:

1. If this does turn out to be permanent, I would give a wig serious consideration. (I see on preview that this was suggested also by 200burritos. As noted, you are not your hair.) As a late-20s guy still in the dating game, I would totally not mind being with a girl with a wig. Frankly, I think it's pretty cool, as you'd be able to completely chance your hairstyle in seconds.

2. I don't know how long you've been with your BF, but I would also reconsider your decision not to tell him. I suspect that you will only get overwhelming support from him if you do. (If you don't: well, let's just say it's better to find out what type of person he is sooner than later.)

3. (An anecdote) I work with a woman my age (28) who has extremely thin hair. She keeps it shoulder length, but it is so thin that I can see the outline of her scalp from pretty much any angle. When we first met, I probably noticed it for about a day or two and that was it. It took almost no time to completely forgot about it. She is by no means a knock-out by most standards, but she has such a natural and honest beauty to her that it completely overpowers any tendency one would have to think about her unfortunate hair loss. In all honesty, I've been quite smitten with her since the first time we met. She owns her look, and the courage that I know it takes her to do that is so beautiful, so sexy, that I find her absolutely irresistible. (Heh heh, I was just thinking about asking a MeFi about how to ask her out when I read your post.)

I know this must be extremely difficult for you, Anon. I hope that you find this is only temporary, but if it isn't, please know that it's only a minor hurdle in the "big picture" sense. You are not and never will be a "freak": You are still beautiful and you are still lovable.
posted by Kevtaro at 7:31 AM on April 16, 2012 [2 favorites]

I used to know a woman with genetic alopecia - she had no hair on her head (no eyebrows or eyelashes either), and she chose not to wear wigs or head coverings, and just totally owned it. She was stunning and I had a really big crush on her for a long time. It also took me a little while to realize that her lack of hair was not by choice - at first I though she just had a shaved head.

I am not suggesting that you shave your head or refrain from wearing wigs - you should do whatever makes you feel the most comfortable and gives you the most confident. I just want to share that women without hair can be gorgeous and conventionally attractive.
posted by insectosaurus at 8:09 AM on April 16, 2012 [1 favorite]

I had a similar experience to you with Accutane use. My hair stopped growing while I was on it, and came out by at the root and thinned substantially over the course of my treatment - which lasted over a year - and for about a year after. My hair was long, thick, and curly. At the time, I went to a salon and asked them what to do about it, and a very compassionate stylist said to me, "The weight of your hair is contributing to the problem." We chopped it off into a close pixie. To fill in some of the sparser patches, I used a powder recommended by the stylist which sort of acted as a thickener. (I wish I could remember what it was, but ask a stylist, they can help you.) For the dry itchy scalp, I used an RX wash from my dermatologist that helped with the scaly patches of dryness, and slept with moisturizer actually slathered on my scalp through my hair, with a showercap on. I washed it out in the mornings.

Accutane changed my life for the better, but while it was doing its thing, it was hard. Hang in there. Feel free to message me if you need someone to talk to or more support.
posted by juniperesque at 9:54 AM on April 16, 2012 [1 favorite]

I worked at a salon owned by my friend for about a year. The salon carried a product line with hair regrowth products by Phytologie that I did not use, but saw the results of on several clients. My friend went through a course of Accutane, and only had minor hair loss (but major dry skin and eyes for some time after) and used this stuff afterward and was happy with it; but more, a client who'd experienced a dramatic and significant hair loss after a traumatic childbirth experience had particularly great results with it. She was so happy she'd cry when looking at the regrowth. It's just something to try, I guess. I wish you the best with this.
posted by peagood at 11:03 AM on April 16, 2012 [1 favorite]

a client who'd experienced a dramatic and significant hair loss after a traumatic childbirth experience had particularly great results with it

Substantial postpartum hair loss is common and expected, but not normally because of trauma. Having stopped falling out altogether in the course of pregnancy, hair sheds (often in clumps) a few months after childbirth and then gradually starts growing back naturally as it resumes its normal lifecycle.

However, stress is known to exacerbate or cause hair loss, so it could have been a combination of the two in your client's case.
posted by Dragonness at 12:54 PM on April 16, 2012 [2 favorites]

If it makes you feel better, my best friend went through literally the exact same thing with Accutane, and now -- four years later -- her hair is basically back to normal. It took more than six months -- the cycle of hair growth alone is 9 months or so, so I'm thinking if I were you, I would maybe get a second opinion from another dermatologist. There are derms who specialize in this very subject and can help you A LOT.
posted by Countess Sandwich at 1:14 PM on April 16, 2012 [2 favorites]

A friend of mine was also losing a lot of hair due to a medical condition. She decided to just cut it really short — a buzz cut, more or less — so that she wouldn't have to continually agonize about it falling out gradually. It actually looked really good on her, and the reduced stress helped with her condition. I think it also helped that it was her decision that caused the hair to leave her head, and not that it just left on its own.
posted by emeiji at 1:48 PM on April 16, 2012

Perhaps Biotin supplements and Nioxin treatment could help? (The former was recommended to me after hair loss as a result of taking an immunosuppressant; the latter was recommended to my hair-thinning friend by a hairstylist who'd lost her hair due to chemotherapy.)
posted by parilous at 2:10 PM on April 16, 2012

I think seeing fistfuls of hair in my shower drain would really traumatize me! I don't blame you for feeling bad- that sounds really painful, and going through painful experiences very slowly can make them feel even worse. Maybe owning a shaved head or shortie cut would be a good interim solution and minimize the emotional pain. Super-short hair is really sexy and looks brave and attention-grabbing; it's a big step but if you commit to it I bet you could rock it.

If I were to shave my head I'd probably couple that choice with a selection of big earrings, well-groomed, darkened brows for facial definition, and I'd probably make a point of wearing mascara + blush + lipgloss. Also, wearing cool shades in public might help you feel more confident and less "noticeable" while you get used to the change. Good luck!
posted by pseudostrabismus at 3:50 PM on April 16, 2012

From what I understand, having undergone a bout of (admittedly less severe) hairloss a few years ago (as a 22 year old woman), it's not so much that the hair is dead but that the hair follicles are scarred/dead. Another thing to consider is the pattern of your hairloss, but from what you've said, it doesn't sound hormonal.

Accutane hairloss is not often permanent, but it can be, and I would recommend seeing a dermatologist who specializes in female hairloss, or just hairloss in general. Or at least see another dermatologist, because they information they gave you doesn't sound very helpful or accurate.

Losing your hair as a young woman is hard. My episode of TE was relatively brief, but losing clumps of hair in the shower was a uniquely horrifying experience. And, although female hairloss surprisingly common, I felt so, so alone. You are not alone, you are not a freak, and you are not your hair.
posted by ablazingsaddle at 6:16 PM on April 16, 2012 [2 favorites]

Sorry that you are going through this. I too went through a period of significant hair loss at a young age. My hair is mostly, though not completely, back to normal.

No one has mentioned this, but do you shampoo often? I have curly hair too, and found shampoo to make my hair much more dry and brittle and suseptable to falling out. Within the past several months I've given up shampoo entirely- I just use conditioner in my hair, and I only do that maybe once a week (use the conditioner as if it were shampoo). Curly hair does not really need to be shampooed and I don't think it needs to be "rinsed" with conditioner that often either. I've noticed my hair is thicker and less dry since I have started doing this. To keep my scalp clean I use tea tree oil which is also really good for dandruff.

So, if you are shampooing often I suggested stopping. I think you'll notice a difference.
posted by bearette at 6:36 PM on April 16, 2012

A hair blog I read (yes, there are hair blogs), Hairdresser on Fire (post on thinning hair), recommends this Bumble and Bumble hair powder for filling in bald spots. If you have short hair, it could help.
posted by bluefly at 9:18 AM on April 18, 2012

I found this thread through a Google search and I thought I would let you know that I am going through the exact same thing. You are not alone.
posted by whereismyrobot at 7:14 AM on April 20, 2012

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