It took me a long time to realize the severity of hairloss that was in store for me.  At first, I assumed that the shedding was due to seasonal shifts and stress and that it would stop naturally.  I had plenty of hair and the slight thinning was noticeable only to me. In this stage, I tried Nioxin products and a grow-fast conditioner.  I had to switch back to Head and Shoulders when the cold weather led to dandruff, and the conditioner made my scalp itch, so I stopped using it.  I added Biotin to my regimen on the advice of a friend, and I took cod liver oil pills and vitamin C. 

Again, the hairloss was still incipient, so I just wore my hair up and waited for it to grow out with more fullness. 

I saw a dermatologist a year ago for dry skin and mentioned my thinning hair.  She looked at my scalp and said that it didn't seem infected or inflamed, just dry.  Men's strength Rogain was her suggestion in addition to the Biotin.  I bought the Rogain and tried it for a few weeks, but I really disliked it.  I was very uncomfortable using potent chemicals anywhere on my body, but especially on my head near my face and eyes, and I disliked the way it made my hair look -- wet and slightly greasy.  I gained some fine dark hairs along the tops of my cheekbones at that time and thought it might be related to the product. Also, I realized that Rogain and pregnancy don't mix, and, though I wasn't pregnant, I was in a serious relationship that I hoped would lead to marriage and family and I read about what I could expect when I stopped applying the minoxidil: major shed.  For all of these reasons, I just wasn't comfortable using the solution, so I stopped my tentative experiments with it. 

My hair wasn't great, but I could still have really nice hair days, and I held out hope that the problem would resolve itself.  I was growing to love my boyfriend more and more, and my thoughts were on him and us.  I didn't have any kind of balding or visible problem, and it never seriously occurred to me that things would get that bad. 

But then this summer happened.  More and more hair began to fall out in the shower which distressed me, but then, somehow, I caught a glimpse of the back of my head in a double mirror....!!!!!! My new part (I had never had a part-line because my hair had always been so thick) was plunging down the back of my head like a white scar.  I was completely shocked and terrified.  The only thinning I had been aware of was at my temples; the hair on the back of my head had always been the densest section of my generally thick hair.  

I began to wake up in the morning with (this may sound strange) a hot head.  My head would be warm and the hair in the back would be sweaty. It was the summertime, so it was hot, but the rest of my body wouldn't be warm -- only my head.  My hair would be greasy and curly due to this sweaty moisture.  So, I did what any rational person would do: I completely freaked out. 

I set up appointments with a primary care doctor, a dermatologist, and my gynecologist.  Being a new patient, my appointment with the PC doctor was scheduled for about three months later.  So, I had three months of utter panic to face.  Three months of losing hair (permanently?!?!?!?!), of not knowing if I was eating/applying/breathing in something that was causing this follicular devastation, of light sleeps punctuated by searing anxiety attacks, of dreams about being bald, of feverish online research, etc. 

Anyway, it was impossible for me to just cool it and wait to see a professional, especially since my online research was suggesting that I might not be met with a helpful, considerate, informed response.  So, I made and (amazingly, incredibly, painfully) expensive appointment with a naturopathic doctor which was scheduled for 2.5 months away.  I didn't know what to do, so I basically decided to do everything.  While I waited to see these doctors, I bought a month's supply of stimulair, but when it arrived, I couldn't bring myself to ingest it.  It just didn't seem safe to take such high doses of vitamins without a doctor's approval.  I bought an air purifier.  I started eating a ton of greek yogurt and drinking Kombucha tea daily.  I bought shampoo and conditioner that were paraben and sulfate free. I did the iodine drop test on my arm, decided I was seriously iodine deficient and began taking supplements only to stop in terror when I read that iodine can negatively impact certain thyroid conditions.  I ate flax seeds, walnuts, and leafy greens. I stopped drinking coffee (I would never have believed anything could motivate me enough to make me give up coffee).  My sunscreen had parabens or something in it, so I switched it for an all-natural one and did the same for my deodorant and toothpaste.  Weeks later, I realized that my new fluoride-free toothpaste had carageen or carageeenen or some other cancer-causing property in it, and this was really the beginning of a whole new level of desperation for me because a realization finally began to sink in for me: every single new thing that I was doing to try to improve my health had the potential to be just as toxic and damaging as the old habit I was giving up.  Let me enumerate. 

That air purifier I got to help me if dust or mold was causing some unperceived physical inflammation?  Well, that was emitting EMF and RF radiation like nobody's business and I had been reading that said radiation can cause hairloss.  That's why I stopped charging my phone in my bedroom at night and removed my laptop and turned of the wifi at night, etc. 

That Kombucha tea I was guzzling to help my gut?  Full of sugar and sugar could equal hairloss. 

That sunscreen I was sedulously applying to take care of my skin?  Could that be contributing to a major vitamin D deficiency? 

I sent samples of my hair to England for analysis by a group called Hairgrowth UK.  I was told that I had a wheat intolerance, a dairy intolerance, an alcohol intolerance, parasites of an unspecified variety, and toxic levels of platinum, beryllium, fluoride, and mercury in my body. Aghhhhh! I did what I was instructed to do.  I started using a water filter, I bought Morrocan Methods shampoo, I took detox baths, I stopped eating wheat, yogurt, and milk-based products. I became a clean maniac. I dutifully bought the zinc and magnesium supplements I was prescribed. I began eating a TON of green vegetables and drinking a TON of water.  The only problem was that I started to feel worse not better.  I was miserable on this new diet. My family and boyfriend were very concerned about the radical change in eating habits and my terror about parasites which I could not hope to rid myself of unless the people I lived with also tried to eradicate them.  I began noticing more frequent stomach cramps and pain, and the Morrocan Methods (I think that's really the way the brand spells its name) was THE WORST thing I have ever done to my hair.  It must work for most people, because I found reviews from all over the internet about its efficacy, but, man, it did not help me.  And I stuck with it for months! I bought into the detox mentality and believed that it was going to bet better, but it didn't...at all.  I could not wash all of the mud out of my hair, no matter how long and hard I rinsed it.  My hair was coated with slime that then coated my comb and the boars head brush I bought (another product I tried unsuccessfully).  Wow, yes, it was bad. 

Meanwhile, I began to finally see the doctors. The gynecologist wanted to test my thyroid but seemed unconcerned about testing my hormone levels.  My thyroid panel came back normal. My dermatologist did some more extensive bloodwork.  My testosterone was high compared to my estrogen and progesterone levels, but, in itself, it wasn't very high. He recommended I see an endocrinologist if I was sure I didn't just want to use Rogain. The naturopathic doctor gave me a stool sample test, a saliva test, and a lyme disease test.  He also asked me to obtain more bloodwork from my other doctors drawn on the 21st day of my menstrual cycle.  He immediately endorsed the no wheat, no dairy, no sugar diet suggested by the place in the UK and strongly invited me to start taking four specific probiotics after I sent in the stool sample for testing. 

These tests were all very expensive, as were the probiotics.  My other doctor was unwilling to refer me to an endocrinologist and was wary of recommending the bloodwork asked for by the naturopath, so I ended up getting half the recommended tests, but getting them twice and my insurance won't cover the second round so I'm waiting for that bill. 

The saliva test indicated overtaxed adrenals, the stool sample showed a high fecal fat content (sorry!! TMI!), poor gut bacteria balance, but no parasites and very little candida, and the lyme test came back positive.  

So now: I'm awaiting the results of a scalp biopsy, but the dermatologist felt confident that it was AGA, CTE, or a combination of the two. I'm taking four probiotics, avoiding wheat, dairy, alcohol, coffee, green tea, and sort of sugar, taking vitamin D, candidastat, three herbal supplements for the Lyme, vitamin B, magnesium, zinc, something to help my body digest gluten and dairy in case any slip into my meals, progesterone creme, and two other things with code-like names that might be follic acid and some other kind of vitamin.  I'm drinking filtered water all day long.  I'm starting to see a Cognitive Behavioral Therapist because this is so scary and hard.  I'm joining this site for support.  And, based on recommendations I read here, I placed an order for two wigs yesterday.  Oh, and I pray constantly for relief from this anxiety and negativity, as well as physical healing if that is God's will. 

Views: 471

Comment by Feedingsparrows on December 16, 2014 at 9:24am
Oh wait! I forgot to say that I tried massage, chiropractic, meditation, hypnosis and earthing! Have I mentioned the sulfate-free shampoo, and the wheat, dairy, coffee, and alcohol free diet?
Comment by Feedingsparrows on December 16, 2014 at 2:36pm
Thank you for your comment, Aimee. I've noticed how gracious you are in your replies and feedback on this site, and I admire your attitude very much. The treatments *have* been stressful-- in part because I get my hopes up and then the results are inconclusive so it's hard to feel enthused, but also hard to stop any particular approach.

I probably sound like a broken record when I ask this because it's already been a running theme in my questions and comments, but -- how have you maintained your sense of feminity? You seem so warm and sweet and you look so lovely. I feel torn, strained, tired, bitter and clenched. When I see the sweetness of others here, I am made so conscious of my emotional deficits, but when I try to be calm and accepting of the situation, I can only last maybe a day or so because I'm needled by these images of myself looking like a balding man on my honeymoon, never feeling beautiful again, etc. How did you come to acceptance?
Comment by Jennifer Krahn on December 18, 2014 at 1:59pm

Hi Feedingsparrows.

I am doing your same diet for a Lyme diagnosis I received this October.  I am symptomatic more than my hair and making some recovery.  Your hair loss is a hard one in itself, never mind all the other diagnoses going on.  Take it one day at a time and know that your healing journey will lead to a stronger more beautiful you in the end.  It takes a lot of time, reflecting and self care but you will do it!  

Know in the end that many of us have gone through similar hair loss stories and are not only living but living life fully with happiness.  You will too.  Continue to seek the support you need and reflect on the little things that make you happy.

Sending you warm wishes,

Jenn

Comment by Feedingsparrows on December 18, 2014 at 4:38pm
Jenn, thank you for your response. I read through your blog entries the other day and was so glad to see the upward spiral of your reactions to alopecia. I appreciated that you shared the depths of your initial terror and dismay (I can relate!) as well as some intermediate steps towards peace and emotional recovery. It looks like you have gone on to become a Follea rep! What an incredible journey! It's hard for me to be going through this loss "gradually"; as I recently expressed to another member, my loss is dramatic and ongoing which means I just stay perpetually in the lank, shedding, greasy, hair-on-my-coat, bag, seat, desk, pants, sheets, rug, blanket, bathroom floor, fiancé's sleeve, etc. I don't know how to let go when I'm stuck in the unfolding stage. Anyway, your example, your upward trajectory, was so helpful and encouraging. Thank you for reaching out to me.
Comment by Feedingsparrows on December 18, 2014 at 4:39pm
*etc. stage.
Comment by Feedingsparrows on December 18, 2014 at 4:50pm
Aimee, I really admire your attitude. I feel ridiculously grateful for the comments and messages from members so far as well as for the examples I've found here of resilience. It's nice that, though you seem to take alopecia in stride, you don't belittle the struggles of those of us who are having a harder time. I hope that my marriage and family create the kind of environment that would allow me to feel as unselfconscious and feminine as you describe. A big part of it is just trying to adjust to the thought of myself looking so very different. Over the years, I've learned what kinds of makeup, clothes, and jewelry are most becoming for me. My hair has been part of that basic canvas, part of what I started with and worked with. It seems like going with a scarf, a cap, or a different colored wig would require a lot of changes to the accumulated knowledge I have about how to best complement my features.

I'm sure you've answered this question a billion times, but what are the basic things I should have on hand in case I either cut my hair super short, or shave it? How many wigs/caps/scarves and what are your favorite vendors?

Thank you again for your help and support.
Comment by Jennifer Krahn on December 18, 2014 at 5:50pm

Feedingsparrows it was a long journey to get to this point. I will admit though that I never thought possible that I would recover from my hair loss at one point.  And I will also admit that my work as a Freedom Rep has also helped me further with my self confidence as I regularly get to meet fellow alopecian women who are all beautiful. It is a chance to share our stories of recovery and help validate the others feelings.  It has been liberating and humbling all at once.

You too will recover…I have no doubt.  Aimee is a fantastic resource for hair. 

Hugs to you

Jenn

Comment by Feedingsparrows on December 18, 2014 at 6:28pm
Thank you!
Comment by michelle on December 18, 2014 at 9:58pm

Hi Feelingsparrows,  I echo some of the thoughts shared.  3 1/2 years ago at the age of 49 I began losing my hair.  I now have Alopecia Universalis...no hair.  I used to have long dark thick wavy hair....dark eye lashes, eye brows etc.  It has been a journey of grieving the loss of my hair...trying many treatments...to acceptance.   I choose to go bald with the exception of the weather where I wear hats and scarves.  Femininity, I believe is a state of being.  When I walk down the street when I am feeling lovely on the inside it shows on the outside...with or without hair!!!  Don't misunderstand me I miss my hair every day!  I simply have decided to live my life and not let my 'lack of hair' define it.   I also choose to be informed about AU...I am very careful of what I read on the net.  I am not out chasing a cause or a cure.  I keep on top of the research.  I also stay connected with this site.  Connecting with others really decreased my isolation.

Oh...and did I mention I live my life.....its soo important.

I wish you well on your journey...it gets better if you let it :-)

Michelle

Comment by Feedingsparrows on December 19, 2014 at 2:53am
Hi Michelle, thank you for your response! I remember seeing your profile pic and thinking a.) what a beautiful smile you have and b.) that the stalks of grass in the shot made it look like you were on safari in Africa. "What an exciting life she must lead!" I thought. Upon closer inspection, my initial assumption about the local of the pic seems silly. Anyway, I think you raise a really good point about confining my online research to reputable medical sources. I have had a hard time with this because holistic medicine presents a compelling alternative/complementary to trad. Western medicine, and it's hard for an amateur sleuth like me to decide what holistic tips, sites, and hypotheses are potentially legitimate and which are more dubious fringe sites. Thank you for your honesty about your struggles with alopecia. It must have been a traumatic time, and the fact that the path to acceptance wasn't quick or easy seems only natural to me. Your comment about femininity as a "state of being" seems true. Maybe I'm blaming the hair loss for this too much and am failing to take sufficient personal responsibility, but I feel like an uglier person inside since this began happening to me. I don't at all mean to imply that a superficial loss makes a person less beautiful inwardly! All I mean is that the anxiety, uncertainty, and (thus far) futile attempts at treatment have made me so tired and raw, not gentle, sweet, confident, or gracious. Again, maybe instead of seeing this as something caused by my loss, I should think of it as something revealed to me through my alopecia. Maybe this side of myself needed to be brought to my attention. The femininity you and Aimee allude to, the kind that you radiate when you feel beautiful, seems much deeper and more real than a mere image of assembled womanly features. I want to work on developing that kind of inner beauty, but it's hard when I can't seem to reign in the panicky, self-focused thoughts. Thank you again for your example.

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