Stay at home mom with two boys and a very loving husband. Active as a school volunteer and gym rat. Interests include travel, cooking, movies, jigsaw puzzles, learning to golf, etc. Experienced AA for the first time at age 47. Been battling with it for the past 8 months.
Hi again, we are not such anomalies, there are so many people at AW that have this burning. If you do a search, you will see that many people are just as confused. Yes, I've heard of Shou wu, actually I've used a shampoo made by Aubrey that has Shou Wu in it. Well, maybe I should try taking it. Are there any side effects? Did your hair start growing when you began taking it?
Hi Phyllis, I've been dealing with the hair loss and the burning for more than a decade. And yes, I've heard of the Substance P...I've been doing research on this for a loooooong time. I actually tried the capsaicin cream on my forehead, not a good idea. I also was taking cayenne pepper for a little while, but I didn't stick with it long enough. Honestly, I don't know if the burning is related to the hair loss, although it did start at the same. I had burning allover my body...and it was very painful. Now, it seems to flare up when I'm expecting my period. So, maybe there is a hormonal component and a food component. It is still a mystery to me. Even though the burning has subsided, the hair loss continues.
Hi Phyllis, just read your comment, I would love to know what your friend says. As I told you before, I went on all those diets before...unable to stick to them though. I drove myself crazy. Then I said screw it, because I could not pinpoint anything. For instance, I would eat tomato and then my skin would start burning, and then the next time I ate a tomato my skin wouldn't burn. So, was it the tomato or not. I restricted so much food at one point that I started losing too much weight. I was afraid to eat anything. Now, I eat everything. The burning has subsided considerably...I can tolerate it. I can't help thinking that it's connected to my hormones somehow. I've been to a neurologist a long time ago, he pat me on the head and sent me on my way. I have a question. Did your skin get red when burning happened?
Hi Phyllis, I just noticed your post about the burning and the inflammatory response after eating food. Yes, I do notice the correlation, in fact, it drove me crazy trying to pin it down. I went on all kinds of specific diets...the histamine diet, allergy diet, etc. I, too, thought it was making my hair fall out more...but still don't know. I got the burning, not only on my scalp, but my whole body including my face. I was told it may be rosacea, but I am still very skeptical, because after a good length of time the burning is finally subsiding. It was very intense when all the hair stuff started. The fact that it is nothing more than an annoyance now hasn't made the falling stop. So, even after about 11 years, it is still a mystery to me, but you are the only person that I've read about who has made the connection.
Hey Phyllis, support groups are really great!! It is great meeting people who have the same problems as you do. This is the reason that I am involved with all the brain injury groups. I have had alopecia most of my life, the brain injury wasn't that hard to deal with, I was 25, I came back from nothing, coma 2 1/2 months, my brain wasn't working that well but I dealt with it in a good way. That thing that has always been there--no hair!! I have some great wigs but I need help in an area that NO ONE understands--but you!! I am very excited to be involved with alopecia world.
Hi Phyllis, I am so happy that you are interested in starting a support group!! I have a brain injury and belong to four support groups. Lliving in the Portland area( live in Milwaukee) is really great for people who have a brain injury. I have been looking for an alopecia support group in the Portland area. Please keep me in information loop!!
Dr Janet Roberts is a dermatologist who specializes in alopecia areata and is up to date on the latest developments and treatments. She is part of the advisory committee for the National Alopecia Areata Foundation. She wrote the foreword for my book, "If Your Hair Falls Out, Keep Dancing!" She's on NW Flanders and her phone number is 503-223-1933.
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