Hi AK. I was in a similar situation where i had just enough hair to cover up the neck and above the ears. When it got too hard to hide, i had to bite the bullet and shave it off. So far I have still not gone all the way into AU, even though i have resigned myself to the fact that it may happen in due course. I have probably about 30% of hair left on my head, but have had some recent regrowth on one side. I have lost all hair on my chest, legs, arms, but have for some reason kept all of my facial hair so far, which is a blessing i know. Its also funny, i have smoooth as silk legs but my knees and feet remain hairy, and so do my fingers and netherregions!. I decided in myself to not let it bother me, and have not sought treatment for the condition that we have. The reason being that the fact is there is very little hope that treatment will bring any change of luck. I would rather carry on and hope for the best rather than be repeatedly disappointed by treatments that wont work, I believe that by carrying on with my life and keeping fit and as stress free as possible, I give my body the best chance to recover. Ive also got an amazingly supportive wife who has never ever said anything but positive things about my condition. She goes a long way to helping me through it. Feel free to keep posting on here AK, I look forward to hearing about your journey with it, and good luck!
So far I still have a lot of hair, but I can tell how thin it is becoming at the temple and how big the spot is behind my ear and new spots along my hair line. So far it is only my hair.
My husband came home yesterday and told me he told one of our friends. I was upset, but he needs someone to talk to. I understand and I want him to have someone to talk to too. I am not ready to tell people yet though. My husband is great and very supportive. He is doing everything he can but he doesn't know what to say to me, to make me feel better.
Just wondering if anyone has registered with the alopecia registry? I saw they also have clinical trials, but I don't think that is something I want to do.
Thanks for welcoming me. Lexi and Cokeman
And Lexi I agree it is comforting, even though I wish none of needed to be here
I've never written a post before, only ever read them, as I was concerned I may say the wrong thing, however, I wanted to encourage you. I'm married, with a great husband and 2 teenage daughters who have supported me from day one. However, even with all their love and encouragement, the realisation was that in fact, it was only me that could get through this, day by day. No one can do that for you. So I took it on the chin as best I could..!.... I took the approach to be very open about it. I also decided to let nature take it's course and didn't see any specialists. (Though low ferritin levels have been linked to Alopecia and mine were low, this is not the same as iron levels apparently) -- I now have thick dark hair growing daily, covering 85% of my head. I have been using natural essential oils, rosemary, lavender blended with some others,for over a year, massaged onto my scalp each night, to encourage hair growth, using aromatherpy shampoos, with rosemary and nettle extract and also having regular healing massages on my body and head, including reflexology and Reikki (Taken up yoga too, over the last 3 years). My condition, I'm pretty sure, was stress related and it was almost like a 'switch' had been turned on, which in turn started my hair loss. My stress has now subsided somewhat, which I feel has enabled my body to start healing and my hair start growing though I know I'm not out of the woods yet as my eyebrows are 'twitching' this week - But all in all I've lived with this condition for the last 6 years and I've coped - and you and your family will too --- my advice is roll with it as best you can,I found the more I talked about it the better I coped and my family coped, as it wasn't a taboo subject. We've even laughed about it on lots of occasions - I hope I haven't sounded patronising, but wanted to offer you my best wishes and let you know that many of us have walked and are walking the same path as you and there are success stories out there, together with lots of support available to you,
I think there is strong connection between stress and hairloss of any kind. I was under a lot of stress when my hair loss started. Too bad that life in general is full of stress for most of us. It doesn't cause hairloss in everyone. I had a very stressful day at work today, and all really for nothing. Big things are made out of nothing. Stress begins (again) Hudson, I am glad things are going well for you. Hopefully the hair growth continues, and the stress is relieved by whatever means works for you.
Thanks for that. My closest friends know and I know I will need to tell more, but I think I need to come to terms with it myself before I can tell people. My children are young 11, 10,5 and 2. I will have to tell them eventually too.
My ferritin levels are very low, I plan on talking to my new dr on Tuesday about it, but I know I need to get them up. Is it not through iron pills, those were pills I didn't want to mess with I read too much is bad and was afraid to take them.
Thanks everyone, just knowing I have someone to talk to who understands is priceless.
Hudson can you tell me more about the oils. That is something I wanted to look into and I need to figure out better shampoo and conditioners to use too. Both on my to figure out list.
My aromatherapist blends essential oils, Rosemary, Lavender, Cedarwood, Bio-energiser (made from seaweed), grape seed, jojba and sweet almond for the oils which I apply each night and let soak in whilst I sleep and a blend of Rosemary and Nettle for shampoo which I use daily. Good Luck and learn to relax from the inside out.....
Hi, I am new to this group. I have been struggling with ophiasis, diffuse hair loss for over a year now. At first I did not know what it was and just recently learned the grim prognosis for this pattern. I have been a little down as I hoped I would get regrowth, but even with treatments, the back wont fill in and I have lost body hair as well. I am afraid this is heading towards AU, but I still have a lot of hair on top.
Hi Starshine. Per my dermatologist, this type of alopecia is the nastiest (with early hair loss at the nape). Mine traveled upwards from there to the top, with all the hair gone within 2 years. He felt it was a losing battle from the beginning but he offered some corticosteroid cream which was tried but offered no relief. The consolation has come later in life as I see my peers losing their hair as part of the aging process (women and men). Most of my male friends laugh when I share that I'm completely bald as they too have become thin on the top, saying they're not in a position to judge anyone, male or female, because of hair loss. It's been a tremendous reminder that the "best" people don't care; in fact we may be the only ones who felt betrayed, Our hair does not define who we are. This horrible period will pass; you will become much stronger and the hair less important as life continues without it. ((Hugs)) Susan
Hi All, It's hard for me to comment on here as I feel like I don't provide the hope that everyone needs who is going through this devastating presentation of Alopecia. I was diagnosed with the Ophiasis pattern in May of 2009, about 9 months after the birth of my first child. My hair grew back with oral prednisone but right at the time I stopped the prednisone tapering, i had a miscarriage and then my hair loss came back with a vengence. Not only in the Ophiasis pattern, but my derm called it diffuse AA. It just came out everywhere. When my hairline began to recede and I couldn't hide it any longer, I begged my husband to shave my head. I was crying every time I took a shower and more hair fell out and every time I looked in the mirror. I was a psychological mess and mourned the loss of my chest length wavy blonde hair every day. My husband was balding and shaved his head from the time we met so I knew he could do it better than I. We shaved my head in Sept 2010. I stopped crying that day. By November, there was nothing left to shave and I was totally hairless and had AU by that point. I still have my moments of sadness, especially when I hear about people newly diagnosed, as it brings back all of the isolation and lonliness and "why me" that I went though with this ridiculous disorder. But I made the decision shortly after all my hair was gone that I was not going to be a slave to a wig. I go pretty much everywhere bald. All of my friends and family know I am hairless, they know if they invite me somewhere I will not be wearing a wig, and I have made some great friends since my hair fell out, something I never thought would happen as I figured who would want to be friends with this crazy bald chick? But I have become such a stronger person due to my Alopecia. I have chosen to not let it ruin me. I choose to be who I am and not what society, or my family, or anyone else expects me to be. I still have my bad days and dark moments, but I don't know a soul with hair who doesn't have those from time to time. Whenever someone comments on my hair (or lack of it) I always take it as an opportunity to spread the word about alopecia. Either people have never heard of it or they will tell you about their family member or friend who has it, too. And so many tell me that they know someone who, like me, chooses not to wear a wig. I just wish that they lived by me as I know that I'd want to be their friend. As Susan said, this horrible period will pass. Everyone deals with this loss differently, but it is my wish for everyone that the burden passes in the quickest manner possible. Surround yourself by supportive, caring people. Focus on the good things. People will not remember you for your great hair, they will remember you for what kind of person you are. All my best and hugs to all, Kristy
Kristy, just curious...are the pictures on your page with the long hair your bio hair before this happened? It was so pretty. My nape looks just like the picture of yours, and I also have diffuse AA.
Went back to the derm today to have my stitch removed from the biopsy. She wanted me to hold off on more shots. I don't know if she knows it is hopeless right that is how I feel. I am pulling on so many strands of hair during the day, that is new. I also got my bloodwork and my thyroid level is high (tsh?) I don't have it in front of me. Going to a new dr tomorrow who is into a more wholistic approach. I don't think fixing my thyroid will bring my hair back, but I guess it might fix the overwhelming tiredness I a, always feeling. I am tempted to find another dermatologist, I know there are good ones in NYC, but really won't they all lead to the same thing. Sigh. I am too tired to cry, I only slept 3 hours last night. I know it will get easier,I know it will.
Hi Lexi, All of the pics are wigs except for the one that says Pre AA. It is black and white with wavy hair. I added a new one of me pre AA today with my hair straight. The doctor I saw when my hair first started falling out was one of the women's hair loss experts in Chicago at Rush, her name is Dr. Lady C. Dy. Horrible bedside manner. But the Prednisone she gave me worked initially (I got pregnant so couldn't take another round if I wanted to). She also checked Ferritin levels. The kenalog injections did not work for me, they just left me with dents all over my head (I did those after the prednisone). I also took Allegra as there was a study that showed it promoted growth in AA. I tried all of the topical stuff but I have sensitive skin and they tortured me. And I felt like the more stuff I had to do to my hair the more paranoid I was about it falling out and the more I would think about it. When I got pregnant in 2011 I stopped everything as I didn't want any of it to harm my baby, so I can't say that it would not help if you tried it. If your body can handle the steroids you could ask your doctor about that AK13. I went to Germany to try an experimental treatment, called exosomes, as they sometimes help others with other autoimmune issues such as Rheumatoid Arthritis. Nothing happened. I also have friends that have AU that comes and goes and the Anthracin (sp?) has helped them from time to time but I have never tried it. So there are some options that have a chance of helping, And yes, if your TSH is high, it may mean that you need Thyroid replacement. I have the lovely Hashimoto's thyroiditis autoimmune thyroid disease as well. Angela Christiano, a Phd, is at Columbia and she is one of the chief researchers on AA. I would imagine that she or her office staff could recommend a derm at Columbia that would be a good option for you AK13.
Thanks for all the advice Kristy. The shots were working and I had a ton of growth and then I lost all the new growth, during the shots, she did another round but I have had no regrowth since it all fell out. I am willing to do more, but she didn't seem hopeful. That was why I was thinking about going to someone who specializes and has seen more cases. I love my dermatologist, but I don't think she has enough experience to even offer me other options. Thank you so much for all the advice, I have some phone cals and research to do tomorrow after my doctors appointment tomorrow.
Hi AK13. Have you heard anything about squaric acid treatments? My derm suggested it, especially for the back area, but it sounds so nasty. I have been on Methotrexate for several months now which seems to have stopped the hair fron falling out, but the back is really stubborn for regrowth.
I have read about it but it just sounds scary!! And when you stop will it all just fall out again or somewhere else :-( I stopped going to the dermatologist for now. I just don't know what she can do for me at this point.
Hi all, I just wanted to comment here as well...I am much like Kristy, I started losing my hair after the birth of my second child. That was back in Nov 2011 and it has slowly been falling out since. It started in this pattern, but more recently I started losing it at my hairline.
I went from having long, thick hair my whole life, to cutting it chin length (to reduce the amount of hair I was finding everywhere!), to last week shaving it all off. HOnestly, it was the best decision of could have made. I have never really gotten upset about my hairloss, bummed out for sure, but never really upset about it, until the night I decided to have it. But, once I made the decision and did it (after a couple tequila shots!), I felt instantly better...and back in control :)
I bought a great wig, that looks like my old, long thick hair and wear that most of the time when I am out around town. But, around the house or if I am working out I just wear a hat or go bald.
I feel truly blessed, because I have so many supportive friends and a very supportive husband. I do live in a small town though, so I have been answering a lot of questions this week about my sudden long hair! The weird thing is that I don't feel uncomfortable or awkward telling people about it. It feels good :)
I definitely have days where I feel like it is unfair that this has happened, but most days I just don't care. I know that in a couple months all the hair on my head will be gone and I have already lost all the hair on my arms, legs, my eyebrows....so, I have a feeling where this is heading! But, after a year of naturopaths, acupuncturists and special diets (I'm a nutritionist), I have finally just accepted that it is what it is.
Just wanted to share my story :)
Wendy thanks for sharing, my mom wonders if my last pregnancy (4th) triggered something. He is 2 so it seems to make sense. I chopped my hair too, super long and curly, to help with the shedding. Now I am losing triple that in the shower and throughout the day. It seemed to slow down a little bit for a few days, and I tricked myself into thinking maybe that was a good sign. You are extremely brave and I just hope I can get to that place.
AK, I was honestly scared shitless when I started to do it, but my hairline was so bizarre (although you could tell AT ALL when I wore a headband), that my husband even agrees that I look better bald then I did with such weird looking hair! And I though that wearing a wig would be super uncomfortable, but I've been wearing hats and headbands for so long, that it doesn't really feel any different than that. And my kids (2 & 4) love rubbing my bald head :)
Yep, I had crazy long think wavy curly hair as well...when I cut it to chin length I wanted to puke. I am so much happier hairless than I was with it all going. It sucks at times, but sometimes I wonder what I would do if it all came back. My girls see pics of me and are surprised that I had hair as they only remember me as bald. It took me a few years but I, too, have accepted it for what it is. I have so many other issues that hair is now on the bottom of the list. I would have paid anything to have it back when it was going. Now I'm not so sure. I really learned who my friends were when I went through this ordeal and it was life changing for me. I'd like to think that I'm a better person because of it. But when there is a cure I will be standing in line.
Wendy, I love the comment about the control issue. While the hair is coming in and falling out, we have good and disastrous days but once we decide to shave our heads, our hair is no longer controlling our emotional state; the chains are gone and we can proceed with our lives!
So a few years back I was diagnosed with diffused AA - lost 90% of the hair on my head and body in just 6 months. Then, it all grew back. Was good for 3 years!
Its been back for almost 2 years now. This time, spots instead of diffuse. My right arm is covered in spots, one on my left leg, and spots on the top of each ear and the bottom of my hairline. As long as I keep my hair down, no one is any wiser. Seems to be getting worse though, not sure how much longer I'll be able to hide it.
Hi Sunflower. I remember your battle with diffuse AA. So sorry to hear it has reared its ugly head again. I hope it does not get too bad this time. At least it is not diffuse this time. I am having my own battle with diffuse ophiasis but methotrexate and injections have kept it at bay for now. I am also trying onion juice on the back area.
I am just cutting the onions and squeezing out the juice but really need to get a juicer. You can buy bottled onion juice on amazon but it has vinegar and salt in it and I dont know if that makes a difference. I have just started it so I dont know yet if it works. If anyone else has tried it we would all love to hear from you.
Hi Starshine, you asked about Squaric Acid about a month ago. We tried it for about 6 months on my daughter and the only noticeable result was a pretty bad rash...the stuff is very caustic. I wish you better luck with the onion juice!
My daughter is 13, and she developed AA in Feb, 2011. The initial hairloss was rapid...she was wearing a bandana for the last month or so of 5th grade. The school asked my wife and I to come in and talk to her classmates about the condition...Luckily, the kids were very supportive. Unfortunately, she was completely bald by August, and entered middle school wearing a wig. It was a pretty good wig... I'm pretty sure that most of her classmates had no idea.
Her hair started coming back in the spring of 2012, to the point we couldn't get the wig to stay on, so we went with natural hair last summer and it grew in pretty well. She went back to school with this new short 'do', and she got tons of complements...life was good! But as we all know, this diagnosis is predictably unpredictable, and of course, hair started flying off her head again a few months ago...this time, the derm told us she had the Ophiasis pattern. Thankfully we made it through the school year without needing the wig (a drastically different style)...my wife has become an artist with the spray paint and hair particle powder that she found at a beauty supply shop.
We are nervous about what the future has in store, but we are certain that my daughter will take it in stride. She has been a rock through this whole process. She has not skipped a beat in her life, and has taken on more activity while going through it...we've actually tried pulling her back on some activity because we don't want to her to get stressed, but she'll have nothing of it. Don't get me wrong, she hasn't totally embraced her Alopecia, and she actually may still be in denial about the prognosis, but if this is the wrong way for her to deal with it, for once, I'm glad that she's not right!
Thank you so much for providing a forum for me to share and learn!
How did your ophiasis pattern begin? I have previously had random spots all over my head that have come and gone. But I hadn't had any new spots crop up for months. In fact they were all growing in. But I noticed a new spot, right on the nape of my neck. Just a chunk missing and it's all stubbly which is how my loss always begins.
No, my ophiasis just started on the nape of my neck. I think when I started to shed heavily, mostly it was the nape area that probably was shedding, until I lost it all. The back of my neck is totally absent of hair, and it is rising higher and higher also going up above my ears. Nice, huh? But the rest of my hair is just plain overall thinning in general. Every day it seems, more and more lately. Only a matter of time when wigs are going to be a requirement. Every day. Read what Sunflower said. Same thing.
I had been trying not to obsess about my hair for a while so I stopped checking. But I was quite discouraged to see a chunk of my hairline missing when I put my hair up a few days ago. I hate that there's no rhyme or reason. I am shedding a ton of hair when I bathe but it seems to be coming from all over. Shrugs, who knows what's brewing up there...! Lol!
Now I may be wrong but it seems that my scalp doesn't like grey hairs. I have become convinced that when a hair goes grey its days are numbered. Has anyone else noticed that grey hairs fall out while healthy hair stays put. Most people don't want to go grey but I'd sure rather that than bald, which is where I seem to be going. I'm 66 and I'm entitled to go grey, or so I thought.
Hello fellow ophies! Hope no one is offended, but i'm trying to keep a sense of humor through this. I'm still in my introduction to the world of alopecia, something I didn't even know existed until last October when the hair above my ears and back of my head began falling out. A couple of the higher up bald patches have since filled in while one patch in the back top of my head stubbornly persists. The rest of the lower part of my head remains smoothly bald with no peach fuzz. I recently read all about the anagen and telogen phases and was hopeful that my hair may return when a new anagen phase begin, which for me could be in the next few weeks. However, I have also read a few places online where Ophiasis "prognosis is poor." So, in about one hour of reading I went from feeling very optimistic to being extremely depressed. Then I found this site, and it has lifted my spirits. For many years I have been in the habit of eating very healthy, and I am fortunate to have enough spare time to spend exercising quite a bit. I mention this only to say I am not convinced a change in diet or supplements would do much for me. Currently, I do still hold out hope that I can get these hair follicles working again through positive thinking and visualization. Specifically, Jose Silva's mind control method and general meditation are two things i hope may help. Have any of you had any luck with your Ophiasis reversing, or do you know anyone who has ever had a severe Ophiasis pattern become full of hair again for any lasting time? Finally, is hair transplant by using someone else's hair even a realistic option for us? Thank you for any help you can give me. I feel the love from you guys already. :)
Hey Ross, if it helps, I've found my alopecia has gotten significantly better. It's never gone away fully, but I used to not be able to hide it very well and now I don't even think about it. So you can see, here's some links to pics. June 2013Today (Feb 2017). I was getting steroid shots for a couple months in 2013 and I was getting brutally sick because of it, so I stopped doing that. Now I just focus on eating right, taking my vitamins, and keeping my scalp healthy. Good luck!
Thanks bananarama! I needed to know it's possible. I'm gonna make an effort at this visualiztion stuff but for it to work apparently i must truly believe. So if i dont have all my hair back by say, tomorrow morning, then i'll assume it's bullshit. Hehe jk I guess i better give it more time than that. Thx again for real.
I have had Alopecia Ophiasis now for about a year and it has really gone down hill. I have had little to no regrowth and I keep hearing that I will go completely bald. I'm so discouraged. I'm 15 and at the height of my insecurities. I'm currently using 3 methods of treatment with only more hairloss. I would recommend ACCUPUNCTURE to anyone who is also struggling because I have noticed that it is reducing the hairloss. I'm also on a topical application and a pill. The wind is my enemy and I'm scared to take my hat off. Any suggestions or anything that would help? I NEED ADVICE PLEASE HELP
First of all, i hear you on the "discouraged." As much as we want and need to stay positive, sometimes the freakin mirror or some bad communication can wreck us! We have to constantly remind ourselves we are not our hair (or lack thereof). Our character and personality are not made of hair. Any other person who doesnt see this is not very wise. Unfortunately, most kids your age arent exactly brimming with wisdom, are they? I guess this is why you want a solution asap. I totally wish i could report that my daily visualization and meditation have restored mine--but the best i can say is that the bald spots above my ophiasis line have mostly filled in. However, below the line is still shiny and bald. What i'm TRYING to do is to focus on the positive (the spots filling in) and not dwell on the bad part (no regrowth in bottom half of head). So try to stay locked in on how the loss seems to be slowing down bc that is relatively awesome! Accupuncture, huh? I have been wanting to try that and you have officially inspired me to go for it! Anything specific i should know for when i set it up?
hello TG! your msg popped up on my email. i think ppl typically get on here when this disease first hits, but eventually it becomes much less of a focus of our lives & they drop off. So, alopecia...
In short, you get used to it. You soldier on. The bruised ego and pain heal. And you gain a new perspective on life. Easier for some than others, but probably hard at times for all of us. As for my update... Spoiler: not encouraging. All my hair abandoned me for the most part. BUT if i’ve learned one thing, it’s that everyone’s journey is different. Dont waste your money on vitamins or pills (unless you have the money, desire, and ability to get one of the hardcore inhibitors like xeljanz. these work for many, apparently, but only while you consistently take them and sometimes you have to change to a similar but different chemical for it to continue working). And i havent seen strong evidence that fasting or accupuncture or the like works either. The disease calls the shots. It may go away and your hair comes back or it may take all the hair on your body, then randomly decide to give you just your eyebrows back (my journey). Note to self: dont get too attached to those eyebrows; they could verrrrry easily be gone next month.
there’s no cause and no cure. and it pretty much sucks. keeping it real. but again, you may not need a “cure,” bc it may just go away. if it doesnt, you will not only survive, you’ll thrive. you will gain wisdom you wouldnt have otherwise and you will exude more love.
imho, it’s actually caused by a buildup of stressors that you may not have even felt much at the time(s).
friend me and msg me if you want encouragement, or want practical advice on things like microblading, or just to hear from a member of your new family. : )
Hey TG - Alopecia World was never that active generally and this subgroup was basically never active, so that’s probably why. I do wish there was a more active forum for folks.
My life basically changed after getting AA in 2006, developing into ophiasis pattern around 2009-10, I think my life got so stressful I lost critical mass of hair and shaved my head. Strategic combing no longer worked, and the topical application of a JAK inhibitor drug trial I was on failed, so there was no alternative and no hope. Shaved it all off Dec 2018 and not a moment too soon as over the next year I lost all of the hair in my scale (no roots, less to shave). That was honestly ideal for me since I didn’t have roots showing and I no longer have to shave every day. My only fear now is that my hair will start growing back in patches. Stay gone!!
Cokeman
Hi AK. I was in a similar situation where i had just enough hair to cover up the neck and above the ears. When it got too hard to hide, i had to bite the bullet and shave it off. So far I have still not gone all the way into AU, even though i have resigned myself to the fact that it may happen in due course. I have probably about 30% of hair left on my head, but have had some recent regrowth on one side. I have lost all hair on my chest, legs, arms, but have for some reason kept all of my facial hair so far, which is a blessing i know. Its also funny, i have smoooth as silk legs but my knees and feet remain hairy, and so do my fingers and netherregions!. I decided in myself to not let it bother me, and have not sought treatment for the condition that we have. The reason being that the fact is there is very little hope that treatment will bring any change of luck. I would rather carry on and hope for the best rather than be repeatedly disappointed by treatments that wont work, I believe that by carrying on with my life and keeping fit and as stress free as possible, I give my body the best chance to recover. Ive also got an amazingly supportive wife who has never ever said anything but positive things about my condition. She goes a long way to helping me through it. Feel free to keep posting on here AK, I look forward to hearing about your journey with it, and good luck!
May 15, 2013
AK13
My husband came home yesterday and told me he told one of our friends. I was upset, but he needs someone to talk to. I understand and I want him to have someone to talk to too. I am not ready to tell people yet though. My husband is great and very supportive. He is doing everything he can but he doesn't know what to say to me, to make me feel better.
Just wondering if anyone has registered with the alopecia registry? I saw they also have clinical trials, but I don't think that is something I want to do.
Thanks for welcoming me. Lexi and Cokeman
And Lexi I agree it is comforting, even though I wish none of needed to be here
May 15, 2013
Hudson
I've never written a post before, only ever read them, as I was concerned I may say the wrong thing, however, I wanted to encourage you. I'm married, with a great husband and 2 teenage daughters who have supported me from day one. However, even with all their love and encouragement, the realisation was that in fact, it was only me that could get through this, day by day. No one can do that for you. So I took it on the chin as best I could..!.... I took the approach to be very open about it. I also decided to let nature take it's course and didn't see any specialists. (Though low ferritin levels have been linked to Alopecia and mine were low, this is not the same as iron levels apparently) -- I now have thick dark hair growing daily, covering 85% of my head. I have been using natural essential oils, rosemary, lavender blended with some others,for over a year, massaged onto my scalp each night, to encourage hair growth, using aromatherpy shampoos, with rosemary and nettle extract and also having regular healing massages on my body and head, including reflexology and Reikki (Taken up yoga too, over the last 3 years). My condition, I'm pretty sure, was stress related and it was almost like a 'switch' had been turned on, which in turn started my hair loss. My stress has now subsided somewhat, which I feel has enabled my body to start healing and my hair start growing though I know I'm not out of the woods yet as my eyebrows are 'twitching' this week - But all in all I've lived with this condition for the last 6 years and I've coped - and you and your family will too --- my advice is roll with it as best you can,I found the more I talked about it the better I coped and my family coped, as it wasn't a taboo subject. We've even laughed about it on lots of occasions - I hope I haven't sounded patronising, but wanted to offer you my best wishes and let you know that many of us have walked and are walking the same path as you and there are success stories out there, together with lots of support available to you,
May 15, 2013
Cokeman
Well said Hudson.
I am also a believer that the more you can talk about it, the easier it becomes to deal with.
May 15, 2013
Lexi
I think there is strong connection between stress and hairloss of any kind. I was under a lot of stress when my hair loss started. Too bad that life in general is full of stress for most of us. It doesn't cause hairloss in everyone. I had a very stressful day at work today, and all really for nothing. Big things are made out of nothing. Stress begins (again) Hudson, I am glad things are going well for you. Hopefully the hair growth continues, and the stress is relieved by whatever means works for you.
May 15, 2013
AK13
My ferritin levels are very low, I plan on talking to my new dr on Tuesday about it, but I know I need to get them up. Is it not through iron pills, those were pills I didn't want to mess with I read too much is bad and was afraid to take them.
Thanks everyone, just knowing I have someone to talk to who understands is priceless.
Hudson can you tell me more about the oils. That is something I wanted to look into and I need to figure out better shampoo and conditioners to use too. Both on my to figure out list.
Thanks again :-)
May 15, 2013
Hudson
My aromatherapist blends essential oils, Rosemary, Lavender, Cedarwood, Bio-energiser (made from seaweed), grape seed, jojba and sweet almond for the oils which I apply each night and let soak in whilst I sleep and a blend of Rosemary and Nettle for shampoo which I use daily. Good Luck and learn to relax from the inside out.....
May 16, 2013
Starshine
May 18, 2013
Susan Innes
May 18, 2013
Kristy
Hi All, It's hard for me to comment on here as I feel like I don't provide the hope that everyone needs who is going through this devastating presentation of Alopecia. I was diagnosed with the Ophiasis pattern in May of 2009, about 9 months after the birth of my first child. My hair grew back with oral prednisone but right at the time I stopped the prednisone tapering, i had a miscarriage and then my hair loss came back with a vengence. Not only in the Ophiasis pattern, but my derm called it diffuse AA. It just came out everywhere. When my hairline began to recede and I couldn't hide it any longer, I begged my husband to shave my head. I was crying every time I took a shower and more hair fell out and every time I looked in the mirror. I was a psychological mess and mourned the loss of my chest length wavy blonde hair every day. My husband was balding and shaved his head from the time we met so I knew he could do it better than I. We shaved my head in Sept 2010. I stopped crying that day. By November, there was nothing left to shave and I was totally hairless and had AU by that point. I still have my moments of sadness, especially when I hear about people newly diagnosed, as it brings back all of the isolation and lonliness and "why me" that I went though with this ridiculous disorder. But I made the decision shortly after all my hair was gone that I was not going to be a slave to a wig. I go pretty much everywhere bald. All of my friends and family know I am hairless, they know if they invite me somewhere I will not be wearing a wig, and I have made some great friends since my hair fell out, something I never thought would happen as I figured who would want to be friends with this crazy bald chick? But I have become such a stronger person due to my Alopecia. I have chosen to not let it ruin me. I choose to be who I am and not what society, or my family, or anyone else expects me to be. I still have my bad days and dark moments, but I don't know a soul with hair who doesn't have those from time to time. Whenever someone comments on my hair (or lack of it) I always take it as an opportunity to spread the word about alopecia. Either people have never heard of it or they will tell you about their family member or friend who has it, too. And so many tell me that they know someone who, like me, chooses not to wear a wig. I just wish that they lived by me as I know that I'd want to be their friend. As Susan said, this horrible period will pass. Everyone deals with this loss differently, but it is my wish for everyone that the burden passes in the quickest manner possible. Surround yourself by supportive, caring people. Focus on the good things. People will not remember you for your great hair, they will remember you for what kind of person you are. All my best and hugs to all, Kristy
May 20, 2013
Lexi
Kristy, just curious...are the pictures on your page with the long hair your bio hair before this happened? It was so pretty. My nape looks just like the picture of yours, and I also have diffuse AA.
May 20, 2013
Starshine
May 20, 2013
AK13
May 20, 2013
Kristy
Hi Lexi, All of the pics are wigs except for the one that says Pre AA. It is black and white with wavy hair. I added a new one of me pre AA today with my hair straight. The doctor I saw when my hair first started falling out was one of the women's hair loss experts in Chicago at Rush, her name is Dr. Lady C. Dy. Horrible bedside manner. But the Prednisone she gave me worked initially (I got pregnant so couldn't take another round if I wanted to). She also checked Ferritin levels. The kenalog injections did not work for me, they just left me with dents all over my head (I did those after the prednisone). I also took Allegra as there was a study that showed it promoted growth in AA. I tried all of the topical stuff but I have sensitive skin and they tortured me. And I felt like the more stuff I had to do to my hair the more paranoid I was about it falling out and the more I would think about it. When I got pregnant in 2011 I stopped everything as I didn't want any of it to harm my baby, so I can't say that it would not help if you tried it. If your body can handle the steroids you could ask your doctor about that AK13. I went to Germany to try an experimental treatment, called exosomes, as they sometimes help others with other autoimmune issues such as Rheumatoid Arthritis. Nothing happened. I also have friends that have AU that comes and goes and the Anthracin (sp?) has helped them from time to time but I have never tried it. So there are some options that have a chance of helping, And yes, if your TSH is high, it may mean that you need Thyroid replacement. I have the lovely Hashimoto's thyroiditis autoimmune thyroid disease as well. Angela Christiano, a Phd, is at Columbia and she is one of the chief researchers on AA. I would imagine that she or her office staff could recommend a derm at Columbia that would be a good option for you AK13.
May 20, 2013
AK13
May 20, 2013
AK13
May 29, 2013
Starshine
May 30, 2013
AK13
May 30, 2013
Wendy
Hi all,
I just wanted to comment here as well...I am much like Kristy, I started losing my hair after the birth of my second child. That was back in Nov 2011 and it has slowly been falling out since. It started in this pattern, but more recently I started losing it at my hairline.
I went from having long, thick hair my whole life, to cutting it chin length (to reduce the amount of hair I was finding everywhere!), to last week shaving it all off. HOnestly, it was the best decision of could have made. I have never really gotten upset about my hairloss, bummed out for sure, but never really upset about it, until the night I decided to have it. But, once I made the decision and did it (after a couple tequila shots!), I felt instantly better...and back in control :)
I bought a great wig, that looks like my old, long thick hair and wear that most of the time when I am out around town. But, around the house or if I am working out I just wear a hat or go bald.
I feel truly blessed, because I have so many supportive friends and a very supportive husband. I do live in a small town though, so I have been answering a lot of questions this week about my sudden long hair! The weird thing is that I don't feel uncomfortable or awkward telling people about it. It feels good :)
I definitely have days where I feel like it is unfair that this has happened, but most days I just don't care. I know that in a couple months all the hair on my head will be gone and I have already lost all the hair on my arms, legs, my eyebrows....so, I have a feeling where this is heading! But, after a year of naturopaths, acupuncturists and special diets (I'm a nutritionist), I have finally just accepted that it is what it is.
Just wanted to share my story :)
May 30, 2013
AK13
May 30, 2013
Wendy
AK, I was honestly scared shitless when I started to do it, but my hairline was so bizarre (although you could tell AT ALL when I wore a headband), that my husband even agrees that I look better bald then I did with such weird looking hair!
And I though that wearing a wig would be super uncomfortable, but I've been wearing hats and headbands for so long, that it doesn't really feel any different than that. And my kids (2 & 4) love rubbing my bald head :)
May 30, 2013
Kristy
May 30, 2013
Susan Innes
May 30, 2013
Sunflower25
Hello everyone. :)
So a few years back I was diagnosed with diffused AA - lost 90% of the hair on my head and body in just 6 months. Then, it all grew back. Was good for 3 years!
Its been back for almost 2 years now. This time, spots instead of diffuse. My right arm is covered in spots, one on my left leg, and spots on the top of each ear and the bottom of my hairline. As long as I keep my hair down, no one is any wiser. Seems to be getting worse though, not sure how much longer I'll be able to hide it.
Jun 23, 2013
JeffreySF
Alopecia can be a Bitch can't it? Grrrrr
Hugz,
Jeff
Jun 24, 2013
Starshine
Jun 24, 2013
Sunflower25
You juicing your own? I looked in the store the other day, but was unable to find the bottles of it. :-/
Jun 24, 2013
laurenmaitland89
Hi Starshine, does the onion juice work.
Jun 24, 2013
Starshine
Jun 24, 2013
Kevin
My daughter is 13, and she developed AA in Feb, 2011. The initial hairloss was rapid...she was wearing a bandana for the last month or so of 5th grade. The school asked my wife and I to come in and talk to her classmates about the condition...Luckily, the kids were very supportive. Unfortunately, she was completely bald by August, and entered middle school wearing a wig. It was a pretty good wig... I'm pretty sure that most of her classmates had no idea.
Her hair started coming back in the spring of 2012, to the point we couldn't get the wig to stay on, so we went with natural hair last summer and it grew in pretty well. She went back to school with this new short 'do', and she got tons of complements...life was good! But as we all know, this diagnosis is predictably unpredictable, and of course, hair started flying off her head again a few months ago...this time, the derm told us she had the Ophiasis pattern. Thankfully we made it through the school year without needing the wig (a drastically different style)...my wife has become an artist with the spray paint and hair particle powder that she found at a beauty supply shop.
We are nervous about what the future has in store, but we are certain that my daughter will take it in stride. She has been a rock through this whole process. She has not skipped a beat in her life, and has taken on more activity while going through it...we've actually tried pulling her back on some activity because we don't want to her to get stressed, but she'll have nothing of it. Don't get me wrong, she hasn't totally embraced her Alopecia, and she actually may still be in denial about the prognosis, but if this is the wrong way for her to deal with it, for once, I'm glad that she's not right!
Thank you so much for providing a forum for me to share and learn!
Jul 12, 2013
Lexi
Welcome to all the new members of my group. Comforting to realize that you are not alone in this journey.
Jul 16, 2013
OnlyChild1213
Just saying hey, guys! Took me long enough to realize this is the group I'm supposed to belong to, and here I is :)
Mar 13, 2015
Lexi
curly1982 Welcome. Saw your pics...hey, the back of your head looks just like mine. Maybe mine is even smoother. Sucks, right?
Mar 13, 2015
Katniss
How did your ophiasis pattern begin? I have previously had random spots all over my head that have come and gone. But I hadn't had any new spots crop up for months. In fact they were all growing in. But I noticed a new spot, right on the nape of my neck. Just a chunk missing and it's all stubbly which is how my loss always begins.
Apr 20, 2015
Lexi
No, my ophiasis just started on the nape of my neck. I think when I started to shed heavily, mostly it was the nape area that probably was shedding, until I lost it all. The back of my neck is totally absent of hair, and it is rising higher and higher also going up above my ears. Nice, huh? But the rest of my hair is just plain overall thinning in general. Every day it seems, more and more lately. Only a matter of time when wigs are going to be a requirement. Every day. Read what Sunflower said. Same thing.
Apr 20, 2015
Katniss
I had been trying not to obsess about my hair for a while so I stopped checking. But I was quite discouraged to see a chunk of my hairline missing when I put my hair up a few days ago. I hate that there's no rhyme or reason. I am shedding a ton of hair when I bathe but it seems to be coming from all over. Shrugs, who knows what's brewing up there...! Lol!
Apr 20, 2015
Maz
Now I may be wrong but it seems that my scalp doesn't like grey hairs. I have become convinced that when a hair goes grey its days are numbered. Has anyone else noticed that grey hairs fall out while healthy hair stays put. Most people don't want to go grey but I'd sure rather that than bald, which is where I seem to be going. I'm 66 and I'm entitled to go grey, or so I thought.
Oct 10, 2015
Dolly
Anyone tried LDN? I read good things about it.
Apr 4, 2016
Lexi
what is it????
Apr 4, 2016
Dolly
Low Dose Naltrexone
Apr 5, 2016
RossG
Feb 26, 2017
Bananarama
Hey Ross, if it helps, I've found my alopecia has gotten significantly better. It's never gone away fully, but I used to not be able to hide it very well and now I don't even think about it. So you can see, here's some links to pics. June 2013 Today (Feb 2017). I was getting steroid shots for a couple months in 2013 and I was getting brutally sick because of it, so I stopped doing that. Now I just focus on eating right, taking my vitamins, and keeping my scalp healthy. Good luck!
Feb 26, 2017
Bananarama
By the way, today's pic is not how I wear my hair normally. I sloppilly put it up in an attempt to deliberately show all the bald patches!
Feb 26, 2017
Lexi
Bananarama, your TODAY picture looks much improved. Congrats on that. Almost normal by far. Wish I could say the same, but sadly not.
Feb 26, 2017
RossG
Feb 26, 2017
Ragan Toppan
Mar 13, 2017
RossG
Mar 13, 2017
TG
Hi anyone still out here? Looks like the last post was in 2017. :)
Wonder if any of you could update what is going on with your ohiasis now? Cheers.
(My introduction and photos are on my profile FYR)
Jun 24, 2020
RossG
hello TG! your msg popped up on my email. i think ppl typically get on here when this disease first hits, but eventually it becomes much less of a focus of our lives & they drop off. So, alopecia...
In short, you get used to it. You soldier on. The bruised ego and pain heal. And you gain a new perspective on life. Easier for some than others, but probably hard at times for all of us. As for my update... Spoiler: not encouraging. All my hair abandoned me for the most part. BUT if i’ve learned one thing, it’s that everyone’s journey is different. Dont waste your money on vitamins or pills (unless you have the money, desire, and ability to get one of the hardcore inhibitors like xeljanz. these work for many, apparently, but only while you consistently take them and sometimes you have to change to a similar but different chemical for it to continue working). And i havent seen strong evidence that fasting or accupuncture or the like works either. The disease calls the shots. It may go away and your hair comes back or it may take all the hair on your body, then randomly decide to give you just your eyebrows back (my journey). Note to self: dont get too attached to those eyebrows; they could verrrrry easily be gone next month.
there’s no cause and no cure. and it pretty much sucks. keeping it real. but again, you may not need a “cure,” bc it may just go away. if it doesnt, you will not only survive, you’ll thrive. you will gain wisdom you wouldnt have otherwise and you will exude more love.
imho, it’s actually caused by a buildup of stressors that you may not have even felt much at the time(s).
friend me and msg me if you want encouragement, or want practical advice on things like microblading, or just to hear from a member of your new family. : )
Jun 24, 2020
5DH
Hey TG - Alopecia World was never that active generally and this subgroup was basically never active, so that’s probably why. I do wish there was a more active forum for folks.
My life basically changed after getting AA in 2006, developing into ophiasis pattern around 2009-10, I think my life got so stressful I lost critical mass of hair and shaved my head. Strategic combing no longer worked, and the topical application of a JAK inhibitor drug trial I was on failed, so there was no alternative and no hope. Shaved it all off Dec 2018 and not a moment too soon as over the next year I lost all of the hair in my scale (no roots, less to shave). That was honestly ideal for me since I didn’t have roots showing and I no longer have to shave every day. My only fear now is that my hair will start growing back in patches. Stay gone!!
Jun 25, 2020