Alopecia World
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What I've tried
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.
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Comment by michelle on December 19, 2014 at 9:37pm
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feedingsparrows, thank you for your kind words. That picture was a photo shoot. I had just had a henna crown by Henna Heals. The picture was taken near my home. I live in the west end of Toronto, Ontario on the lake. The stalks of grass was on the peer....a favourite spot of mine.
Grieving takes time. There is not rule book. Give yourself permission to mourn the loss of your hair. Then give yourself permission to move forward.
take good care,
Michelle
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Comment by shanjon67 on December 21, 2014 at 7:40pm
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I am not on here often, only now seeing this, so that's why my response may not be very timely. My hair loss began around the onset of puberty, as a kind of overall thinning out. The thinning continued on into my twenties, when I looked in the mirror one day and "suddenly" saw how thin my hair had become. I guess I wasn't really ready to notice if before then, I'm not sure. Once I noticed, I tried Rogaine, Nioxon, and a few other treatments, to no avail. Unless you count the baby hairs that Rogaine gave me, they haven't gone away even though I stopped using it.
Then I moved onto products such as Toppik and colored hairspray. What an ordeal they all were! At least an hour of prep time and I now cringe to look back and think of how I must have looked. But at least I still had my own hair, right?!
Then onto my first hairpiece or topper. It cost over a thousand and dollars and was truly horrid! I didn't think so at the time, of course. I was just thrilled not to feel every drop of rain and every gust of wind on my exposed scalp, not to mention the paranoia of thinking everyone is starting at the "glare" coming through the thin hair. I went through several of these hairpieces, even though they were all human hair - Asian hair, which is nothing like European hair, but again, it was real hair and it matched my hair color, if not the texture. I must have been very rough on these pieces, they were constantly shedding and needing to have hair sew back into them, something that had to be done by professionals at least an hour away from where I lived.
Next came my first foray into wigs. I didn't want to wear a wig, I think because I remembered playing dress up with my mother's wigs, which were not even convincing to a child! But I saw a really cute headband wig in a catalog and said, why not? From there I ordered several wigs from a local wig boutique, and after that began ordering online.
Of the wigs I have worn, I always start out being really happy with them, but this feeling usually fades within a few months, until I eventually come to loathe and despise them! It is usually because of some flaw, real or imagined, that I can't cover up and feel like people are always staring at - an exposed weft at the parting, the lace front hairline (which I always cover with bangs, anyway) or just the way the "hair" seems to lose movement as the wig is worn.
I am now attempting to make my own lace wig. I have been watching video after video on youtube about the ventilation process and have been practicing faithfully on a weave cap with some human hair I bought locally. I feel pretty good about this right now, who knows how I'll feel when I start making the actual wig itself.
I guess this has been my kind of long-winded way of telling you that it really is a constant journey, and things you do now might seem ridiculous later on. But I also believe that you do what you are able to do at the time, whatever you have Freaking out is probably inevitable but, as you no doubt already know, it is just the first step you have to get through until you figure out what works for you in the long run. Hope this helps!
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Comment by Feedingsparrows on December 21, 2014 at 10:24pm
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Aimee, thank you so much for your response. It's good to have this clear outline of a well-stocked closet. The scarves must be so lovely, and, honestly, the fleece hats sound very comfy (I love fleece).
Michelle, the setting sounds lovely! Also, I appreciated your point about grieving. It's helpful for me to recognize the change in my appearance as falling into that category of loss. Before reading information on this site, I hadn't thought of my distress as grief; instead I just viewed it as anxiety or self-consciousness, and those are certainly real components of the experience, but "grief" hits home -- it feels right. Seeing it that way is helping me to understand what I'm feeling and why.
Shanjon, your comment is very timely. My post is quite recent so I'm still taking it all in and contemplating ways to move forward both practically and emotionally. I'm sorry that your hair loss began at such a young age, but I appreciate the perspective that long-term process has given you. You can step back and see the development of your techniques and your changing attitude towards yourself and this condition. What you describe makes a lot of sense to me. The idea that one's approach becomes more sophisticated over time seems natural. I wonder if it's too much to hope that I'll be able to find a long-term solution that I'm really quite comfortable with and that I'll be able to spend my energy coming to greater emotional peace with the situation. In fact, I guess it seems like every response to alopecia is multi-faceted in that it must take into account: decisions about how to appear in public and dress your hair/scalp, decisions about attempted treatments (supplements, injections, diet), and choices about how to communicate with others about your experience i.e. to tell people that you're wearing a wig, to say nothing, to deliberately speak about it in a lighthearted tone so as not to invite pity, to confide your fears and hopes about the future with a few select people, etc. Thank you again for your message. It gives me a lot to think about.
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You are welcome. As for whether or not you choose to tell people you wear a wig, that is entirely up to you. I don't tell everyone, of course, but I also don't deny it should someone ask - though that hardly ever happens. I'm more matter of fact about it now, you will get there someday. After all, it's nothing to be ashamed of, and not telling people kind of gives it the air of a "dirty little secret". Hope this helps.
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Here is my thought on 'should you tell'. And this coming from the woman who goes out bald. I think there is a difference between keeping something private and keeping something a secret. Keeping (anything) a secret implies shame. So is Alopecia a disease to be ashamed about??? Does it change how we look..yes...to be ashamed of how we look is concerning. Keeping alopecia private is very different. This implies choice. I choose to tell what I want to tell about my personal business. This doesn't mean you need to present 'bald'. This was my choice (I don't like wigs for many reasons). The idea is to accept yourself, period! Mourn the loss of your hair (as I shared) yes but please move through feeling shameful. This will keep you in that negative space more then anything.
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Comment by Lauren@CornerofHopeandMane on December 22, 2014 at 9:25pm
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Oh boy - that sounds like a full-time job! I wish you strength through it!
After so many years of trying to figure out the "why?" about my hair loss (I'm convinced it's AA, anyways), I've accepted wearing hair. It's been so much fun! I'm glad to see that you know that's at least an option. What wigs did you get?
Best of luck!
Lauren
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Michelle, I agree about the line between privacy and concealment, at least in theory. For me, the benefit of announcing my alopecia more generally would be to let people know what I've been going through; it could help a lot to explain my recent diffidence/asocial behavior. Lauren, thank you so much for your kind wishes. I was surprised to hear your conclusion about your hair. Based on some of your posts here as well as what I gleaned from your blog, I thought you had AGA rather than AA. May I ask if your new understanding of your condition has changed the way you feel about your alopecia? I have wondered myself how I would operate and communicate if my diagnosis was of a different kind. Thank you and Merry Christmas!
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Comment by wclawvs on January 25, 2015 at 8:24pm
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Hi. I'm really curious about the probiotics. Can you share which ones were recommended? My five year old lost her hair in August. Thanks.
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Hi, yes, I can share. The naturopathic doctor put me on a regimen of 1/2 a packet of VSL, 2 scoops of L-Glutamine powder, and one capsule of Orthobiotic in the morning. You take the probiotics without food at least one hour before eating or before taking any antibiotics. At night, I was told to take the other half of the VSL packet, another 2 scoops of the L-Glutamine powder, another Orthobiotic capsule, and an Enterogenic Intensive capsule. This routine is quite expensive and is somewhat of a hassle when added to other health regimens. I do not have alopecia areata; my alopecia is AGA and TE. This probiotic treatment in conjunction with vitamin D, liquid vitamin B12, folate, and other vitamins when taken over a 5 month period did not help my hair. It did, however, alleviate some of my digestive problems. I wish your daughter the very best. She's so fortunate to have a parent who is exploring all the options. I am not recommending this product, but I've heard some positive things about it in case you want to take a look: http://www.nisim.com/?gclid=CLKb1rTMsMMCFYdj7AodCD4AEw
Best wishes!
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Thank you so much!
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