Replies to This Discussion

Permalink Reply by Hope on February 14, 2013 at 12:32pm

Hugs. I am getting a second scalp biopsy this afternoon. I started with thinning hair about two years ago, which has progressed into lots of hairloss. I only have one completely bald patch, but have lost over 50% of my hair and my scalp is visible and I can't hide the patches anymore. I ordered a wig online too, but I hate the way it looks. I am going broke fighting hair loss. Currently I go to a Chinese doctor and she started with accupuncture and was trying to balance my Qi and detoxify my liver and kidneys. I got fustrated with her after a month and said that is not doing anything, so now she is treating it as a bacterial infection. Two days ago, I had my first treatment of ginger and moxibustion (burning of a special root that is used to warm the infected areas) and this morning all of the sores have healed. She told me to rub ginger root, the juice in my scalp every day. I also take herbs. I don't know if this will regrow my hair, but so far it seems to have slowed down the loss and the itchy pimples are a lot easier to tolerate. I tried the red pimento oil and it did nothing for me, and it is very thick and greasy. Don't get caught up in marketing hype and spend lots of money. Try essential oils: cedarwood atlas, rosemary and thyme mixed into carrier oils grapeseed and jojoba. I have heard good results from that combination, and I do massage my scalp with it when I am not using ginger or aloe. The internet will be your source of much discomfort as there is so much information out there and what works for one person may not work for you. Also, I am learning the art of patience, I try something new expecting results the next morning. Hair growth can take weeks, not hours or days. You are not alone, there are lots of alopecians around. I joined this site last week, you will meet some great strong people here. Keep smiling and allow yourself a good cry now and then. This will be a hard journey for you, as it is for all of us. I have many down days but I am slowing getting to the stage of acceptance.

Permalink Reply by Stephanie on February 14, 2013 at 1:59pm

I agree with everything you've just said! The internet has definitely scared me, and patience is going to be hard for me. And as far as crying.. sometimes I feel like I cant even control my tears, as soon as I think about it, or feel the bareness of my skin in spots of my head, it just instantly puts my mood right back into the depressed feeling. Not to mention, I work at a car dealership, and the department is full of young men, the salesmen type. Very arrogant, and selfish. I am worried as soon as this gets noticed at my work place, it will be everyone's topic of discussion behind my back, and I'm not sure how I am going to deal with that. I've already noticed some staring the other day when I was walking to my car, I felt the wind lift my hair, and then the bitterness on my bare skin, I could feel that it was standing out. I know trying to hide it prob. wont help, but for right now, so early in this discovery, I'm trying my hardest to style my hair (whats left) over top of the patches. And I hear ya about the money part, Ive already spent a fortune just at the derm. with all the supplements he suggested, and the rogain, i purchased but havent used. But right now, I just am willing to try everything and anything that may work, so far ive been using Biotin, lavender oil, aloe, and this hormone stuff for women called MACA.. all in which I have been told can work well, without the negative side affects. And as far as getting frustrated with the derm, I hear that as well. I have cancelled my appointment for the injections, and have set up an appointment else where just for a second opinion, but that appointment isnt until the 25th, so I guess this will be where patience can come in handy. Im just worried that so much has fallen out in such little time, that I cant imagine what a months time will bring :/

Thank you for responding, and anything you think may help, please don't hesitate to share!

Permalink Reply by I miss my eyebrows most !!! on February 14, 2013 at 12:49pm

Hello Stephanie, My name is Brenda. I lost my hair very fast as well. I went from alopecia areata to Everywhere on my body in just months....I wear wigs and got my eyebrows tatooed on . I still prefer to just wear a bandana or just bald head. Like my Alopecia name states I miss MY Eyebrows the most !!!! I came to realize that there is not much you can do...I did try the shots of Cortizone and it did nothing....I have just learned to live with it and change hairstyles whenever I want...Good Luck!!!!

Permalink Reply by Stephanie on February 14, 2013 at 1:49pm

I am sorry to hear that you lost it everywhere :( Ive messed with some photo editing, and let me just say I would look SCARY without eye brows, and Im not sure I would be talented enough to be able to fake them either, haha I have a hard enough time just applying the basics of make-up. And why didnt the wigs work out for you? You just didnt like the way it looked? I would love to hear more about your experience, and appreciate your input (:

Permalink Reply by Annette on February 14, 2013 at 4:00pm

Hi Stephanie I am also new to all of this I started loosing my hair in October last year I felt the same way you do it's so scarey. Mine was due to a new medication I was given by the Doctor so just checking you haven't been put on any new meds. I lost all my hair within 11 weeks till I only had about 10% left I ended up shaving the rest off. I was told to take Silica Compound Tablets from the health food store Now I am taking the Silica Gell I have 90% of my hair growing back but everyone has a different story as to why they have Alapecia. I know it's easier said than done but try not to stress you are not alone even though you feel that way at the moment. I had the injections in my head and it did not work for me actually it made it worse. Chin up and do as much research as you can.
Annette

Permalink Reply by Stephanie on February 14, 2013 at 4:11pm

The only new meds in my life is a birth control pill I started about 6 months ago, but I ran that by my doctor, and he had told me it had nothing to do with it. But as I said, I did not like that derm, and have an appt. on the 25th of this month for a second opinion, I will also run it by that derm and see what she thinks. 11 weeks, thats it? ): I wish I had some sort of warning symptoms to this, but instead I feel it is all happening so fast, way faster than I can keep up with. Silica gel tablets? Is there a specific brand you use? I, so far have been using biotin, lavender oil, aloe vera gel, and this hormone stuff for women called MACA- all which h ave been referred to me. I think I have spent enough money this week, and will try and give it a month or so and see if any of that helps.. hoping for the best! Really not sure I'd pull off the whole wig thing, nor can I pull off hats/scarves- :(

Permalink Reply by Hope on February 14, 2013 at 6:11pm

Steph, I hear you on the wig thing. I haven't built up the courage to go wig shopping, I'm not sure what looks worse, my choppy patchy hair or a bad wig. Also, I feel like I am admitting defeat, there is still lots of fight and denial in me. But pride before a fall, so I will make the time to get a proper wig soon. I had a biopsy today, and it was sad to see the little kids, especially the girls with complete or partial hair loss. They were no more than six years old. I pray that my daughter doesn't get this. She is so young and impressionable. For the boys they reminded me of that cartoon Caliou, one mom said she goes weekly with her son for treatment. It grows back and then all falls out, she's about to give up. One little girl has long hair with considerable hair loss. I think for me being 37, its all about perspective, I am otherwise healthy..I need to stay positive.

Permalink Reply by Annette on February 14, 2013 at 10:04pm

The Only reason I liked the sound of the silica compound was because it is specificaly for hair and nails it's not expensive so I have gone from completely bald to a great amount of hair on my head but as I said mine I am sure it was 99.9% because of my meds even though I only took it for 3 weeks the damage was done by the medication already. And it was one of the side effects as well. I also bought a wig but it is to uncomfortable and damn hot so I wear a bandana with hair extentions pinned inside it thats works for me as my head can breath in the bandanna. Yes my hair was gone in just 11 weeks and started to grow back after I shaved it in about 7 days.

Permalink Reply by Sarah on February 17, 2013 at 7:10pm

Hi Stephanie, i'm 29 and noticed my first patch of hair missing about 5 years ago (can't actually remember exactely) and it remained as a small patch for a couple of months and then grew back, over the next few years afew more patches developed which i just tryed to hide as best as i could. It was the end of 2010 when i noticed it was getting really bad quite quickly ( i was working a stressful job and trying to sell our house at the time so not sure if that triggered it or not). I purchased my first wig as i was getting to the point on a windy day it was too hard to hide. I would hate walking down the street with someone walking behind thinking they would notice when the wind blew. I remember the day i brought the wig and the lady suggested she shave my remaining hair off, it was hard looking at myself and then touching it the first time. For afew months it remained more or less the same and then i got pregnant and a month or so into my pregnancy i started losing hair all over my body, whether pregancy triggered it or whether it was going to happen anyway i don't know. It happened so quickly and coming up 2 years later i still havn't had any regrowth, i am completely bald and dont have any hair anywhere. When it first happened i did get quite down about it, i remember crying and not coping well. When i brought my first wig i didn't really think of it as being a long term thing and i guess assumed my hair would grow back. I now am in a place where i can accept the fact that it may not and am happy enough with that.
Everyone is different and i think some people will find the whole hair loss thing much harder than others and thats okay. For me it was really hard when it started all over as it made the whole thing seem more permanent, from what i've read the type i have now is the most rare and therefore the least likely for it to grow back and if it does more chance that it will fall out again. Looking back at where i was i dont think i could have imagined myself where i am now in the fact that i am truly okay about it, i dont love it but i dont hate it and i'm still happy as a person, it doesn't get me down like it used to. I hope my post wasn't too doom and gloom, every person with Alopecia is different, try to remain positive and in the meantime have some fun with some wigs, they are scary at first but i now get lots of compliments on my "hair" which i never got before! lol. Its always funny when i tell the person its actually a wig and the look on their face! :-)

I'm happy to chat, feel free to ask anything if i can help i will. :-)

Permalink Reply by I miss my eyebrows most !!! on February 19, 2013 at 12:11pm

No doubt about the wigs....I never got compliments when I had hair, but I get alot of I love that color on you or that style looks great on you !!!!! I learned that " What cha going to do " attitude really early on....I am still me . I REALLY miss my eyelashes though ......

Permalink Reply by Sarah on February 20, 2013 at 12:25am

i really miss my eyelashes and eyebrows too!!

Permalink Reply by michelle on February 22, 2013 at 9:09pm

Hi All,

I'm reading all of your posts and having some 'aha' moments. I am 50 years old and started losing my hair two years ago. I had a long thick mane of hair. Two years later the only hair left on my body are a couple of eyelashes. I started with steroid creams then moved to the shots (very painful!)...I tried 'natural' remedies...don't bother it is a waste. Purchasing my first wig was one of the most painful experience. Like the post above it felt like failure. I don't love wigs. They irritate my scalp. I have started a new treatment, DCPC...Its done here in Toronto...one of the only hospitals in Canada. Its a topical treatment that works similar to chemo...tries to trick the immune system in attacking the poison instead of the hair follicles. Once a week for at least 4 months.

Whether this treatment works or not my goal is to live well with AU...whether I wear a wig, hat, or go bald....I'm still me.

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