Alopecia World
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Hey Guys... I heard of this website through a girl I met through my hairdresser. I have no idea what to do or how to reach people, So I suppose a blog would be the best way... I am 21. turning 22 in February. I will tell my story and hope I can find some of you to help me understand, googling this stuff doesnt help because different sites I find all say different things so i'm not sure what to believe...
In 2009 I notice in december my eyebrow was starting to thin in the middle of one... i mentioned it to my doctor but she never really said anything, related it to my thyroid problem... it got worse until i had one full eyebrow and one half eyebrow, and then the other one started to go in the middle as well.. In march, I will never forget it, I woke up and went to the bathroom, and brushing my hair, i seen on the top in my part there was a quarter sized hole. I went downstairs to my mom crying i didnt know what was going on. My doctor mentioned alopecia, she called a dermatologist and she got me an appointment with an endocronologist. The dermatologist I couldnt see for 6 months so the endocronologist was the only option at that point. I seen him and he told me to stop shampooing my hair and to put on a cream on my head on the spots only, one steroid and one fungal cream. Now for me that seemed ridiculous to be applying cream 3 times daily and to not shampoo my hair, so i did the cream for 2 weeks, tried not using shampoo for a couple and i stopped that right away because it hurt and felt like it was falling out worse. When I went back to see him 6 weeks later, he looked at me and told me it didnt look to be bothering me... now i dont know if any of you can relate but that hurt me sooo much. I am trying to not let what i look like bother me but hearing someone say that to me, the tone of the voice and everything, i walked out and cried.
I had decided in the summer I couldnt stand looking like i did and feeling like i did, with no eyebrows, so i found a girl who did them for a living and got them tattooed on. I think it was the best decision i made for myself n that fact and they look excellent, anytime i tell someone, they are very surprised.
In may it started growing back. I had plans to go to school in september in Toronto, and i live in the maritimes so Myself and my parents figured since i wouldnt be around for a follow up appointment with the dermatologist, i should just see someone in Toronto. (my appointment for her was in August anyway) So I cancelled it and everything grew back except for one unnoticeable spot. I forgot about it. This past may.. 2011 I noticed in the shower i was getting a little extra hair in my hands... and i thought i was just being paranoid... but then i also noticed that i was no longer plucking the little bit of eyebrow hair that had grown back... so i knew that something was wrong, i now lived in a difference province in the maritimes so i went to a walk in clinic, explained what was going on and asked for a referral to the same dermatologist, and i called my family doctor at home and asked her to do it as well... that was in May.. my appointment isnt until january 2012... So if this is Alopecia 100%... then my hair will probably start growing back in soon and who knows what she can do...
Feels like no one can do anything, Right now i have basically no body hair. I have like a little tiny bit in my armpits but that is it and on the top of my head i have about 10% of what I usually had before..
Lately i have just been feeling so much anxiety and I try to be strong but its just getting really hard, I miss the feel of hair, the smell of it, the going out with friends and doing your hair, coloring your hair, everything!
My boyfriend is working out west so he really doesnt even realize what I am going through, he doesnt even know how bad its gotten since he left either so he really isnt a good support for me at all.. he tries sometimes but with him being away its really tough for the both of us.
In August I bought a partial wig for the top of my head but now its gotten so bad that it doesnt help at all, and then two weeks ago I bought a full synthetic wig, and its ok... It is very long and i find it tangles so easily, I dont want it to fry up or anything so i try to be as careful as I can with what I put by it but i just sometimes sit and think about all this and maybe it would be better to just be completely bald... but then again, ever since this started happening, I have become so self conscious of myself it makes my strength so much harder to hold on to. Alopecia is not the only part of my life that is hard right now so it just adds to everything and makes it ten times more stressful :(
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Comment by lovelyjan on November 8, 2011 at 10:17pm
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Welcome To AW where everyone cares.
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Comment by Calipso on November 9, 2011 at 5:50am
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So hard to hear your story...I understand how you fell...I fell hopeless to this disease and just waiting, sometimes it feels like life is on hold, just waiting to change for the better. Hold on girl! Have faith, and just move on:) We are here to support you and seek help of our own:)
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Comment by Alliegator on November 10, 2011 at 10:01am
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Welcome Erika! Thank you for joining the "Wigaholics" group. It is a hard and difficult thing to experience. We are all here for you. Just remember that you are not alone. For your next synthetic wig, maybe try a shorter one. I can get my chin length wigs to last about 6 months. I'm not trying to talk you into anything but... you can still wear full wigs and be bald. I shave my head. It was very liberating for me when I first did it. And each time it is like I'm taking control of my hair loss. Since I don't have hair to look at, I don't think about my AGA all the time like I used to do.
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Comment by emmettbrown on November 13, 2011 at 9:53pm
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Hi Erika,
One thing you'll learn as you research this disorder is that it's caused by an "autoimmune" reaction. This basically means that your body's immune system is attacking itself. In alopecia areata or totalis, it's attacking the hair follicles. I had a similar experience, although not as dramatic. I last about 20% of the hair on my head, all my facial hair, and the middle of my right eyebrow. I also experienced a lot of anxiety (and it wasn't just because of the hair loss).
One autoimmune disorder that can cause both hair loss and anxiety is celiac disease or gluten intolerance. In my case, it turned out that both wheat gluten and dairy products caused my hair loss. Since removing them from my diet, I haven't had anymore hair loss. In fact, if I slip up and eat something I shouldn't, I immediately feel itching in my scalp and eyebrow in those areas and lose a few strands of hair. I'm not sure if this is your situation, but many people on this site have tried this diet and have had good success with it.
One other thing to understand about autoimmune disorders - since your immune system is cranked up too high, you should be careful not to crank it up even more. So be careful with vitamins and supplements. Some are good to take (biotin and folic acid are great for the hair and encourage hair growth) and some will just add fuel to the immune fire (zinc, vitamin A and green tea, for instance).
You'll also find a bunch of different advice on this site about treatments that people have tried with varying degrees of success to regrow their hair. For me, I took an enzyme complex called Wobenzym (it's supposed to neutralize the immune complexes that attack your cells). Then I added in some bovine colostrum to the routine. I was able to find both at a healthfood store. The only reason I went this route is because I didn't tolerate the topical corticosteroids my dermatologist prescribed. They really affected my sleep badly. So I did some research and tried this approach - my doctor was amazed at how quickly my large bald spots filled in (this was before I connected the dots and figured out the gluten/dairy situation).
Anyway, just wanted to share my situation in case any of this info might help you.
Best of luck! Things will get better...
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Comment by Erika on November 13, 2011 at 10:00pm
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I thought about wondering if there was any other kind of thing that could be causing it, that i cuold be tested for bloodwork with, i have heard of celiac and gluten intolerances but i dont know if i have been tested or not, I know when it first happen i did get some bloodwork but i dont even know what... I still havent even seen a dermatologist, but i despise needles, so i dont know how i would do with injections... i got this perscription before from another doctor with a certain kind of rogain but its stronger, but i dont want to use it until i shave my head as its hard to spread it on my head with hair still there, but i will be doing that in the next few weeks...
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