female alopecia
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  1. #1

    How my hair grew back. Or so I think.

    Hi ladies,

    I've been a long, long time lurker of this site-- having suffered from alopecia, on and off, for years. I've been through it all-- quarter sized patches, alopecia totalis, diffused hair loss, worn toppers, wigs, concealers, scarves, cried endlessly, you name it. Without rambling, ad nauseum, about the obvious things you can related to, I thought I'd share the most poignant lessons learned. Take it with a grain of salt. After all these years, this is what has finally worked for me, but as they say, your mileage will vary. Despite the suspicious, brand spanking new username, I didn't come here to gloat and then "peace out". If my post resonates with one person, then I'll have considered my words worth sharing.

    1. Stress. I remember a former derm saying that stress has not been clinically proven to cause alopecia. I wasn't about to research fanatically to find out the merit of her statement, but my intuition called bull sh*t. Stress wreaks havoc on the entire body and is a major contributing factor to many diseases. Looking back at all the significant episodes I had, I could pinpoint major stressful situations a few weeks/months prior to the start of hair loss. I *had* to prioritize the management of stress, not eliminate, but dedicate a lot of effort to reducing stress. Zazen medication, vipassana multi-day
    meditation retreats, yoga, connecting and maintaining personal close relationships, breathing exercises, EFT techniques, heart rate variability exercises, something. No where is it promised that once you have your hair back, that you will automatically be happy or stress free. You will always have to work on your stress levels and emotional issues. Always.

    2. Nutrition. I've been to 4 derms, 2 psychologists and 1 psychiatrist. None inquired about my eating and sleeping habits. It wasn't until I visited an ayurvedic practitioner where I proverbially got bitch-slapped up side the head with a rude awakening. Everything you put into your mouth is either fighting or fueling disease. You can have the sexiest car on the market, but without gasoline, you're going no where. The cliffnotes version? I cut out sugar, caffeine, alcohol, soy, grains and wheat. I follow mostly a paleo diet, getting most of my calories from fat and animal products: non-industrial grass fed meat and specific non-industrial oils (ghee, grass fed butter, MCT oil, coconut oil). Vegetables, tubers, bone broths, fermented products, limited sprouted nuts are a staple, but I've dumped the rest. Now does that mean I'm militant about my diet? No. This goes back to rule #1: stress. To strive for some perfectly clean diet typically produces this weird obsession and militancy that isn't going to help with the stress factor. 90/10. And that 10%, you bet I'm going to enjoy whatever it is I'm eating or drinking. Again, your mileage may vary, but I would take a long, hard look at what exactly you are putting in your mouth, why you believe in the diet you are ascribed to and the research that supports it. I was a long time vegetarian on a low fat, high carb, high grain diet. I won't get on some preachy carnivorous soap box, but I will say that by adopting my latest dietary eating habit, I have leaned down to 15% body fat without abusive exercise, without calorie restriction, gained lots more energy, blood work has never been better and have an almost full head of hair. I'd be happy to talk to anyone about my insights, point you to blogs, podcasts, peer reviewed/reputable studies and great books to read that support my beliefs. PM me.

    3. Acceptance of your disease, but conscious of the idea that you have (might have) some control over managing your alopecia. Again, I'm not trying to speak for everyone. I can't tell you the number of times I would coil up and freeze under the idea that I have no control-- that at any moment I would lose my hair and have to put my life "on hold". Again. It's a crippling feeling and it was dis-empowering to the point that it only fueled the alopecia. I remember reading the posts under this very topic, "A positive Outlook" when someone would mention the power of acceptance, or "finally coming to terms" and I would either get upset, sad and or refuse to believe that I could ever come to accept this part of me. I will always have alopecia, somewhere "lurking", waiting to be triggered. I'm certain I will always have thin and short hair. While I still struggle with this, I am slowly learning to love all the various parts of me and to quit compartmentalizing them. I tend to stay on the clinical, scientific side of things, but I've come to learn there is immense power in positive thinking, in acceptance of who you are and loving yourself in a gentle and humble way. Self hate, self pity/victimization and anger festering inside is toxic. Baby steps. I'm not saying it's easy to love yourself, but you've got to work on acceptance. It's part of the healing process.

    4. As for drugs and treatments? I've done the spiro, rogain, horse hair shampoo, countless supplements and shots. I will still get kennalog shots if there are small patches that come up and it works at stopping the size of the patch. As for vitamins, I try to get most of my nutrients from nutrient dense foods, but will supplement with Vitamin D, magnesium and fermented cod liver oil for non-alopecia related reasons. I still use Indian herbs suggested by my ayurvedic doctor, switching between Amla oil, a Nirgundi/Mahakshirbala mix and another herbal complex mixed with yogurt once a week. I incorporated his recommendations the same time I made a huge dietary ovehaul, seriously began to incorporate meditation into my life and adopted way better sleep hygiene. In my self-experimentation and body/mind hacking, I held no variables constant, so who knows why my hair grew back with such fervor. But again, it's a holistic approach: nutrition, stress management, incorporate some western injections with some eastern herbs and acupuncture and wa-la, the turnaround this past time shocked not only me, but my family and hairdresser.

    Sorry for the horrific grammar. I just really wanted to spend the afternoon getting this out there to share. There is hope. You have to believe that there is and believe in yourself. Pre-alopecia, I lived somewhat of a superficial, less appreciative life. After repetitive hair loss, I was forced to look inward toward reflection, and after everything I've learned after this last bout of pretty bad shedding (1/2 head), I now truly believe that our deepest pains are a gift, but only once I was smart enough to appreciate that this pain could actually be my greatest teacher. I wasn't willing to learn this lesson in prior episodes, but I'm glad that although it took many years to finally get it in my head, I've learned these lessons. I hope you, too, can learn and save yourself some heartache, if possible. The framework in which I'll handle myself if I lose hair down the road will be different, but I am choosing to believe that because of the lessons I've learned I will have taken it upon myself to drastically reduce the chances of severe hair loss down the road.

    Again, I hope this helps someone, somewhere in that off chance that you're neglecting the fundamentals to what it means to be healthy: sleep, mental health and food based nutrition. And although it feels like it more often than not, you are NOT alone. Feel free to contact, criticize, ask questions and reach out via PM for support.
    Last edited by sanfrancisco29; December 16th, 2012 at 07:50 PM.

  2. #2
    Junior Member
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    Im a new member, and only starting to realise that i may have AGA. I have the typical pattern of widened parting and balding crown, and am only 19
    so far Ive been to a gp and a gyn, and neither seem to really care, and shrug it off saying that its just stress.
    I just have a few questions to ask, 1. Would going on Spiro help me decrease hairloss/regrow, even if my Testosterone level came back as normal?
    2. As i'm still young, and only mildly thinning, would a hair transplant be beneficial for me?
    3. I am thinking of starting rogaine 5%, just wondering what your experience was like?

    Sorry to bother you will all these questions, but i feel so lost at the moment, as it doesnt seem like anyone is taking this seriously.

  3. #3
    Hi tenfingers,

    I had my first bout of Telegen Effluvium right around your age. Again, for me at the time, it was major un-managed anxiety and stress. Alopecia further exacerbated the stress. On top of that, I wasn't getting much sleep in college and my diet was refined carb heavy and in general, crap.

    Did your gp or gyn run a full panel of blood work? How did you come to your conclusion about your testosterone levels?
    Hair transplants should not be a considered option at this stage. That's just my opinion. Perhaps someone else can chime in.
    Rogaine works for a lot of people, but the idea that I would have to use it for the rest of my life put me off from continuing use. I didn't see the initial "Rogaine shed" that some see. I found that the points I listed above were more effective than the need to include Rogaine as part of the permanent regimene.

    Is your blood work normal? Are you getting 7 - 8 hours of sleep a night? What are you eating and drinking? How are you managing stress? These are the questions you need to ask yourself. Jumping the medication wagon is the typical response, but there are cheaper and more effective ways to go about the management of hair loss.

  4. #4
    Experienced Member
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    Hi Sanfrancisco29,

    I am really happy for your hair growing back!!!

    I am glad that sleeping well, eating healthy, less stress and all helped for you, but i don't believe we are all that lucky....

    I am 33 years old and from age 22 till age 28 i was under a lot of stress. Because of that i got really bad habits like: eating a lot of junk food, not a lot of vitamins and my sleep was crap, but my hair was sooo thick, healthy, shiny and beautifull....

    More than two years ago, i started losing my hair.... a lot of it... CTE with AGA, or just CTE (i don't know), but i started eating very healthy!! All vitamins checked and everything is fine, beside the hair loss... i don't have that much stress as i had from age 22 till 28, and i sleep at least 8 hours a day.... My hair is worse than it had ever been....

    I am really happy this regime worked for you, but i don't think it will be a cause for many people.... But then again, maybe it will help some...

  5. #5
    Hi Fleur,

    Yes, I tried my best to articulate that there are a multitude of factors that contribute to hair loss in women and there is not and will never be a one size fits all story or solution. We're all different which makes things incredibly frustrating and beautiful at the same time, in that Taoistic sense. Hair loss is traumatic and that stress exacerbates a disease that might fundamentally be the trigger of the disease (for some, not all).

    It's important that we're sensitive and supportive to the various ways which brought us to a forum like this, but I just wanted to remind anyone who was willing to read my post that you are more than just your disease. Be gentle with yourself. Dogmatism about your treatment or obsession with counting the number of hairs that fall out only makes our predicament worse. Everyone should be heavily evaluating their mental health, sleeping and eating habits because it's easier to focus on other solutions and pills instead of dialing back to the fundamentals. That said, you're right- hair might and for many will still fall out. But as a wise person has told me time and time again: as long as you walk with good intentions, do not be concerned with or stressed out by the outcome of your actions.

    I wish you continued great health from the looks of it, and as far as the hair-- hang in. Seriously, we're all rooting for each other from behind our keyboards. You can't say that about a lot of forums.

  6. #6
    Experienced Member
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    Quote Originally Posted by sanfrancisco29 View Post
    Hi Fleur,

    Yes, I tried my best to articulate that there are a multitude of factors that contribute to hair loss in women and there is not and will never be a one size fits all story or solution. We're all different which makes things incredibly frustrating and beautiful at the same time, in that Taoistic sense. Hair loss is traumatic and that stress exacerbates a disease that might fundamentally be the trigger of the disease (for some, not all).

    It's important that we're sensitive and supportive to the various ways which brought us to a forum like this, but I just wanted to remind anyone who was willing to read my post that you are more than just your disease. Be gentle with yourself. Dogmatism about your treatment or obsession with counting the number of hairs that fall out only makes our predicament worse. Everyone should be heavily evaluating their mental health, sleeping and eating habits because it's easier to focus on other solutions and pills instead of dialing back to the fundamentals. That said, you're right- hair might and for many will still fall out. But as a wise person has told me time and time again: as long as you walk with good intentions, do not be concerned with or stressed out by the outcome of your actions.

    I wish you continued great health from the looks of it, and as far as the hair-- hang in. Seriously, we're all rooting for each other from behind our keyboards. You can't say that about a lot of forums.
    Good attitude!!

  7. #7
    Experienced Member
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    Hi Sanfrancisco29. It is encouraging to know that your hair did regrow. I am currently suffering with diffuse alopecia areata which began about a year ago. I have tried many treatment including Prednisone and Methotrexate which at this point, has not done much. I am very worried that I will lose all my hair as it is now severely thin. I have tried changing my diet, eating only lean meat, fruit and vegetables and cutting sugar, carbs and caffeine. I take hair supplements and Vit D. It is hard to de-stress when I constantly witness the slow agonizing death of my hair each day, but I know that crying and being depressed it not going to help. Is there anything elso you can think of that might help?

  8. #8
    Starshine,

    Despite years of experience enduring and recovering from several forms of hair loss, my ability to dish advice is still severely limited. What I will say is that I wished the "experts" I was consulting addressed the topics I mentioned above, which is looks like you're already doing yourself. You're way more ahead than I ever was when I was lost in a sea of confusion on what do to. Doesn't make you feel any better since you're still in a sea of confusion, right? I know, and I'm sorry that I have little to offer than my deepest empathy.

    Diffuse alopecia is harder to treat with injections. I don't have experience with taking Prednisone, but I'm certain you can get feedback from other users on here. The last time I had diffuse hair loss, my derm prescribed spiro. I took it for several months, but for logistical reasons, stopped talking it, and the hair loss didn't get better or worse. Again, as with most things talked about on here, it works for some, not for all, and who really knows since most of us can't hold all things but one controlling variable constant [insert obviously frustrated emoticon here]

    Since I don't much to go on, I'm going to pick on the most important line in your response: It is hard to de-stress when I constantly witness the slow agonizing death of my hair each day, but I know that crying and being depressed it not going to help.

    Above all else, you must manage your stress. Manage manage manage. You will never eliminate stress, but if you let your hair loss worries consume the majority of your thoughts day in and day out and let them drive your emotions, you are only empowering the disease, fueling the fire that thrives on stress. never forget- your thoughts are metabolized into biology, on a cellular level.

    It's okay to feel sad. It's definitely okay to cry, but when you gut check yourself every day, on a scale of 1 - 10, you must work to stay in that 1 - 3 range of stress. It'll never be zero (see hormesis), but staying in the > 7 stress level range will exacerbate the hair loss. Stress wreaks havoc on the entire body.

    Also, you are not witnessing the death of your hair (most likely). You have to think glass half full, woman! More than 70% of your cells are replaced every year. Every year! When one of your hairs "dies", believe that it's the beginning, not the end. The sooner that hair decided to jump ship, learn to reframe the situation and realize the sooner the new one has the opportunity to grow in.

    Nothing about hair loss is easy, nor will I ever claim it to be. But I can't, um, "stress" how important it is to CTFO. When in the face of such an emotionally devastating thing like losing your hair, empowerment is gained by
    your attitude and non-reaction toward it. Don't fall into the victim trap. Despite all the haters out there, hope and positive thinking and a constructive attitude are powerful tools toward healing. I'd go so far as to say even more powerful than the current drugs on the market.

    Chin up. Stay strong and keep up the good work on sticking to a low inflammatory diet. Yanking out grains, wheat, soy, sugar and industrial seed oils is the biggest step in eliminating/reducing a lot of the modern autoimmune diseases we're seeing, and many forms of hair loss are autoimmune diseases.

    I look forward to reading *your* personal post under positive outlook in the near future.


  9. #9
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    Thanks for the encouraging reply Sanfrancisco29. I, too, hope one day to post in the positive outlook forum. Until then, I will take your advice and try to stay calm. I am truly glad you did grow your hair back, it gives us all some hope.

  10. #10
    You know what's hard? Despite all the things I learned, that initial "F***" moment never goes away when you wake up and see a few hairs on your pillow. Now, I remember the day when I had, literally, hundreds strewn across the bed, the floor and shower drain. But still, even with a few hairs, that trauma is deeply embedded. So what I'm saying is that there's not this clearly demarcated "grass is always greener". I'm not standing on the other side. I'm standing on your side. Together we must concentrate and have gratitude to the hair we *currently* have and have no expectations with what's to come. The diet and sleep part is a cake walk relative to the mental stuff. It's the mental stuff that will get us. This expands to all parts of your life, so you might as well learn to apply this type of mentality with everything. And I *promise* you, if you do, you will prevail in life.

    This has nothing to do with hair loss, nor do I have any ties with the authors/publishers, but I highly recommend reading the books: When you are falling, dive and When things fall apart by Pema Chodron. Both are easy and excellent reads.

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