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Energy for researching treatment? When does it fade?
I am in year 6 of Alopecia with no head hair at the moment but fortunately all eyebrows and lashes. I am on my second bout of immune suppressant drugs ( the first set worked then it all fell out) BUT after reading the discussion boards I realised I have lost all passion for trying alternative treatments and even reading about them - maybe that is a good point to be at? Seeing as we have no known certified medical cure for Alopecia.
Interested to hear:
Do you still have the energy and passion for researching and trying alternative treatments?
Replies to This Discussion
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Permalink Reply by Jules on
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A very severe bout of shingles was a side effect the first time round - was warned it might happen and ended up in a&e. Since that, no. Some fatigue but I work out daily and am very into sports so it is hard to tell whether it is all down to the meds. Thanks for your response. I agree with you about tying all the diet stuff etc but i just like to eat healthy and treat myself too.. therefore can't be bothered with a strict restrictive diet!
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Permalink Reply by willow on
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Jules, I have had alopecia universalis for 43 yrs, and the only remedy or suggestion of cure I haven't tried is Voodoo. I'd walk through chickens for even a few months of regrowth. I think trying to stay positive, and follow thy heart is number one, and the rest is suggestion and nothing else. You'll know when to give up, and when to not. The medical , alternative and herbal world is constantly changing, and progress is always possible. Had I know 40 yrs ago, what I know today, I may not have suffered to the degree that I did, and that being on both ...it is said, give in...maybe,,,give up...never! Blessings to you :)
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Permalink Reply by michelle on
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Hi Jules,
I think this is a really good question. I started losing my hair a little over 2 years ago. It progressed to Alopecia Universalis over the last 4 months. Right now I am taking it one day at a time. So, today I'm doing the DPCP treatment. Its once a week for who knows how long. I'm not looking into the future of this disease. I accept the unpredictability that AU brings.....I am being quite mindful and concentrating my energy on today only. I'll decide what to do when tomorrow comes.
Michelle
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Permalink Reply by SamirK on
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I had a two year relapse of losing almost all my hair, most of my eyebrows, some of my eyelashes, and patches on my body. I tried every kind of alternative treatment: chinese herbs, accupuncture, homeopathy, gluten-free diet.... Nothing really worked. But mid-last year I began meditating (using an online-service called www.getsomeheadspace.com). I found that a certain sense of anxiety I had - the very same one that was often a trigger for hair loss began to get under control. Lo-and behold: six months later I have a mostly full head of hair.
So that's just a sample of one. But I think it makes sense.. many of us are kind of intense people and dialing that down a bit (whether it helps grow hair back or not) can only make us feel better. Then: who knows?
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Permalink Reply by Lauren on
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I've had this for 30 years. Sometimes I care about research, sometimes I don't. It comes in waves every few years. However, I think it is wonderful when people try.
We don't have a single known cure, but we don't have a single known cause either. I have had two remissions in 30 years. The first was after discovering a b12 deficiency due to another illness. When that was treated, my hair came back after 4 weeks and it stayed for 5 years.
I am in month 2 of my second remission. Again accidental, after discovering wheat and dairy intolerance and removing them from my diet, my smooth head was covered in little black hairs after 3 weeks. After 6 weeks, my eyelashes sprouted. I even have to shave my legs. It probably won't stick forever, but for now, it's neat. Except for the legs part.
I've never had any success with "alopecia cures" and I've tried them ALL! However, both remissions were immediately following treatment of something bigger. In my opinion, we all have a cure. It's a matter of finding that one needle in a continent of haystacks, and the cure may (or may not) last until something else goes wrong. We are a sensitive bunch, and we have an unfortunate situation. If research makes you feel better, do it! If accepting works better, do that! Whatever causes you less grief is what is best for you. And for the record, I think I look like a troll when I'm bald, but aside from myself, I've never seen an alopecian whom I preferred with hair. I can't see your picture on my little phone, but I'm positive you look beautiful. Everyone here is.
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Permalink Reply by Late K8 on
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When I had AA I tried a few treatments but found that the pain/discomfort was ridiculous. I progressed to AU and stopped even considering them. That was about 12 years ago. For me I am thankful that I have Alopecia. I know this might sound crazy but let me explain. I am thankful that if my body is going to subject me to autoimmune it has chosen to attack my hair. I don't have diabetes, ALS, Lupus or some of the other horrific autoimmune disorders that I have known others who have. So from my point of view, why would I undergo sometimes painful treatment for something that causes me no physical pain. Since getting AU I have become a mother and have done everything I can to get in great shape, eat right, and be healthy. That is my way of treating it, and it is mainly for a healthy mind towards myself not for a cure.
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Permalink Reply by Bonnie on
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I know exactly how you feel. I have often said the same thing. I am a translocation carrier (my DNA is scrambled). Of all the alleles those chromosomes could have broken, I am so blessed that alopecia and a few other minor problems have been all I have had to deal with. When people ask me how my chemo treatments are going, I am grateful to tell them I don't have cancer. It is amazing the power our society has over us and we don't even know it. I didn't even realize my society had so much influence over every day choices such as hair style, clothing, even the color of my socks. Now that I have stepped away from that, and inadvertently rebelled, if you will, by being a bald woman, I feel so free. The funny thing is, if you are confident about what you do, you can get by with anything and society can't say a word about it. Well, if it does, you just don't hear it. I wish I had known about Alopecia World when I first realized I have it. The support here is amazing.
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Did you know that some vaccines, like the swine flu vaccine plays with our DNA. When I read that I was shocked, but not surprised!
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I imagine all the additives, preservatives, and plastics that are in our food haven't helped our DNA either. Scary, but I'm with you, Willow, and not surprised.
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Permalink Reply by Dena on
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I often wonder at what point do people just focus on learning to live with Alopecia. My 6 year old was diagnosed 1 1/2 years ago. We tried several treatments, but I wasn't willing to just leave it up to the Dr. Many of the things she suggested just seemed scary to me. The start of Nov. 2012 she had a full head of hair down to her waist. Not on single spot. Unfortunately two weeks later it all started falling out. She started 2013 with no hair, no eyelashes, no eyebrows. I felt totally helpless. I was on a mission to do whatever it takes. When her dr. appointment came around in Jan she said she didn't want to try anything else and to just get her a wig if it bothered me. I assumed she was bothered, but she was fine bald. I wasn't so sure she really meant what she was saying so we went to see the dr. While there she started pressuring me to start Prednisone. This sounded absolutely crazy to me for a 6 year old. She also said she thought my daughter was depressed because normally she seemed happier when she came in for her visits. I then explained that it wasn't the hair loss but she was sick of the doctor visits. I had to force her to come. Her advice was if I wasn't going to try the Prednisone then I should go get her psychiatric help because she was going to need it and she would resent me for not doing everything I could. I went home and told my daughter if she wanted to stop, we would stop. Since then she has been so happy. Her scalp isn't irritated from creams or injections and she is getting along with life. She has also started to grow back some eyelashes. Something the Dr. couldn't do for her. She has a wig, but prefers to be comfortable so she never wears it. I still wonder sometimes if I gave up to early. I hear of people who have spent their whole lives fighting. For so long our focus was researching Alopecia. It seemed to consume our lives. When we finally stepped back, it felt really good. I just couldn't justify the experiments anymore. She was a young girl and it was all to risky. Who knows, somewhere down the road when she is older she might decide to go back, but that will be her choice and for now we are just trying to be the healthiest we can.
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Permalink Reply by amym on
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I love that you listened to your daughter. I have dealt with AA for 32 years. Spots come and go, but now in my 40's I am bald. I will say usually when I start losing my hair again is when I start looking at ways to stop it, but very quickly throw up my hands and say, "oh well". I love the spirit of your daughter, Dena. I'm glad she is happy and comfortable.
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