Hi, my dermatologist (who seems to know next to nothing about FFA and far less than our collective knowledge or my own research on the internet) has after 7 months, highly significant hair loss and 6 months of taking hydroxychloroquine and using clobestal has suggested doxycycline and steroid injections (although there is a two month waiting list) what are your thought? Has anyone had any success with either? Many thanks
I have also been reading everyones posts and hope to hear more from those going to the conference. So many ups and downs with this awful disease and today was a down day for me. I try to stay positive but my confidence is at a low point. I saw this today and my hope is that a celebrity will bring more attention to alopecia.
I know we all say this many times but just knowing you are all out there across the world sharing the same issues and thoughts that I am as we all navigate our way through this is just so huge to me. This is a condition that affects us all in so many ways. I would be lost without all of you so thank you. https://www.racked.com/2018/5/24/17386756/celebrities-jada-pinkett-...
AnnieMay, that is a most interesting website. What if all hair enhancement companies went out of business. What would TV and Movie personalities really look like.
Hi everyone long time no write, b/c honestly there are times I just want to check out and not think about my forking hair (and watch The Good Place, can you tell?)
Curly K, I am so glad you are going to the CARF conference for us. 250$ sounds normal to me too. How often do you have to get your hair taken off and put back on? When I went to learn about your bonding system, they said I would need two hair pieces. Do you have this too?
Illust8r; I am feeling more and more numbness on my sides, and the same issue with thinning on top to the midpoint of my head.
That article is very interesting on the different patterns of FFA. I am in pattern 2 very clearly, with eyebrows, without facial papules.
The numbness is so weird, so weird... what the hell *is* this creeping crud crawling along our hair follicles? No you don’t have to answer that.
I admit I am falling off of my prescribed regimen of Clobéstal and tetracycline, mostly from a sort of puttering-out fatalism, and feeling I’m being taken for a fool by the dermatologists, who though well-meaning (I hope) and apparently well-informed (well... maybe) are just throwing crap at me so I feel like *someone* is doing *something*.
Which is why I’m looking forward to some honest info from CARF. If no one knows what the hell they’re doing I’d at least prefer to hear it from people who are honestly trying to figure this out, rather than those who are covering themselves (and me) with steroids, minoxidil, and various lotions and potions.
1. Menopause. I agree there has GOT to be some connection. My hair started changing after I had my hysterectomy in 2008. I will ask about this at CARF.
2. How often I take my hairpiece off. Everyone is a little different - it depends on how dry or oily you are. Some ladies need to go in every 3 weeks. I go every 5 - and can honestly go 6-7 (I'm dry). I only have one hair piece. Never heard of having two...?
3. The place I go (Custom Hair Tampa Bay) specifically helps women with hair loss from cancer treatment or alopecia. You can google them and see their website. I found them by googling hair replacement.
4. I still have some of my natural hair on the sides and back but its thin. My hair piece pretty much is what everyone sees now. I'm excited to go be with people who know what its like to live with this - and to hear from researchers and doctors who are trying to find us answers.
Thanks curlyK, for all your insight and positivity, about to loose another cm on the front of my hairline..grrr, although I have decided not to go down the line of drugs and know it will mean a wig I am still in the fingers crossed mode it's just going to stop aka denial, enjoy the conference and thanks for your feedback.
`Hey Plf if it’s any consolation I’m in the same place right now. The little creepy red dots are inflamed on top of my head, and I want ice cream to make it go away. Because it’s 9PM and at night I obsess and ice cream helps. I apply it directly to the red dots, and I swear it works just as well as all that cortisol nastiness. Then when it melts down my face it actually tastes good.
My humour is a manic defense against depressive anxiety, BTW.
CurlyK - the thing that worries me - I tend to develop allergies - and I’m worried that I would become allergic to the glue. Another thing to worry about (can I glue it on with ice cream ... sorryyyyyy). So, please tell me that the glue they use is absolutely non-allergenic, right? Please?
Halfbakedwho, I will ask about the glue when I go in in a few weeks. I’m not sure about that one other than I can tell you that it’s never bothered me. Sometimes my scalp gets irritated and I have to pat my head sometimes. (can’t scratch it like normal) But it’s never been so bad I couldn’t stand to wear it.
And it looks really nice, CurlyK - it really helps to see your picture - it’s extremely reassuring.
I ask too b/c recently I had to have my foot wrapped in athletic tape, and after about 3 weeks, I developped an allergy and couldn’t use it anymore - an allergy to the glue in the tape.
I suppose it’s silly for me to worry about yet another thing with this problem, but it’s hard to not worry. Like not thinking about pink elephants or whatever...
I am making up for lost time I think (not having written in awhile).
The thread above on the cannabis tincture is very interesting.
I am feeling very ambivalent right now. The doctor (the famous one) I saw last February prescribed very little medicine, and I am having another flare-up - and I admittedly haven’t been consistent in following his regimen (steroid lotion and antibiotics). My impression is that he doesnt’ think it’s possible to stop the loss, and b/c he does hair grafts he doesn’t seem to care one way or another (though who knows what he thinks really...). I called about a month back telling him that my scalp was still bumpy and red, and he said it was « too soon » for the meds to have any effect. I found this a bit facile...
The dermatologist I had before threw the whole diagnostic book of potions at me... did I lose less hair? I don’t know, but maybe having a lot of stuff to put on my scalp made me *feel* like I was doing the right thing. She also had a better bedside manner, she also wanted to do a biopsy. It’s now too late in the season for a biopsy (she won’t do them in the summer b/c scarring).
I am scared again - it comes and goes. Part of it is feeling at times that the hair loss happens so fast; other times I suppose I just don’t notice. I am coming to the States in mid-June and will see my sister (who is beautiful and has all of her hair of course) and that could be why I am more upset right now.
I think I might go back to derm 1...
As long as I’m writing a novel... I will add that I can’t stand hormone therapies (I bloat up, I get irritable, my digestion is a mess), but yet I’m thinking I *should* try that again.
It’s midnight and I should stop here. There are times though where I just think « how can this be happening, this is just insane, I will make it stop now. » I suppose delusional-denial thinking is about as effective (for me) as anything else, so there’s that... : /
My mom lives in Boca though so I may get back down there at some point. I'm from Upstate NY and also grew up in Philly, went to college in NYC, then lived in Maryland, now I live in France (for 20 years now). Where are you in Florida?
Has anyone else noticed an increased sensitivity to sun? I recently went on a trip that included visiting Black Canyon City, AZ to see Saguaro cacti (super cool!). I was not in the sun much, but did spend about 10 minutes taking pictures in direct sunlight. That night I had what appeared to be an allergic reaction of sorts on my face: itchy, red, swollen, etc. At first, I thought my rosacea was acting up, but I started to realize it was definitely something else. I had tried some new sunscreen on the trip (Physician's Formula Translucent Powder with Titanium Dioxide and Andalou Naturals 1000 Roses Daily Shade) but the active ingredients were nothing I haven't used in other products.
My face was inflamed for almost a week, and I ended up going to the doctor. I was prescribed 5 days of oral steroids and told to take anti-allergens twice a day. All of it helped, especially the steroids, and it went away. I have not used the sunscreen since, but not long after I walked four blocks in direct sunlight and my face got irritated again. What gives?? Is the related to FFA or maybe just another autoimmune issue? I'm thinking of forgoing a trip with my sisters in August because I don't want to be out in the sun : ( On a side note, my FFA papules seem to have gotten better after taking the steroids. I wonder if it's a coincidence and how long it will last. So many mysteries...
i play golf so I am outside a lot and have not noticed this issue. I wear a facial sunscreen that is available on line and it is made for skin prone to acne, rosacea and hyperpigmentation. Elta MD Skincare. I highly recommend it and you can get it tinted or clear.
i was trying to upload an image, not working out so well.
I’m throwing everything I can at this horrendous condition and it continues to proceed at a rapid pace!! I try to be hopeful but so hard when hair is literally disappearing in front of me. I had no idea the pace would be so rapid. If it was a possibility I would embrace life as a hermit in complete contrast to my once sociable self... how can this be happening? Sorry this sounds so self absorbed....boohoo!!!!!!!!!!!!!!
I went to see the lovely Dr Wong in London today who has an interest in FFA and has attended the CARF meeting when it was held in London. She has organised a day in London in September where experts in all areas of Alopecia (medica/psychological /beauty etc) will be talking about what they do. If you go on the following website you can view the details. It's expensive but looks interesting... I'll be popping along. www.getaheadofhairloss.com
As I see more 'inroads' along my hairline this week, I am so damn frustrated and angry. What is the point of all these doctor's appointments and conferences, these unproven theories (e.g. Sunscreen), untested treatments, very little research!? Sorry folks, I am in a bad way today. Feeling ugly. The loss is slow but it marches on.
I am considering homeopathic treatment as in the past I have had some success with homeopathic medicines when traditional meds failed. Anyone know of a good homeopathic practioner in the mid-Atlantic to north-eastern area of the US?
I am going to look into the London conference. I too Beez am seeing a lot of "inroads". Loss is slow and marches on - as you say exactly. I need to be more consistent in taking my treatments, but (I repeat myself, and many of you) since they don't seem to make any difference I let it slide. That being said I should try harder with the castor oil. It's just so damn greasy - and I'll need to shampoo daily, making it a bit moot since my hair is dry and I shouldn't shampoo every day.
However, I did go ahead and schedule with my first dermatologist at the specialized clinic in Paris, moving away from Dr. Famous Man. She wanted a biopsy, she wanted to throw the whole kaboodle of diagnostic solutions both proven and unproven, but hey she was thorough, scary-thorough.
The middle of the night is hardest.
I don't know what to say that hasn't been said already. I throw up my hands, I smack my forehead (six fingers now), I pass...
Hi all, yes totally frustrated by FFA, the problem is that it is totally in your face..no irony there..you see it's stupid effects every day...as I have said before ..given up on miricle treatment s, deatologist just push their treatment s don't care re side effects..it sucks..hope there is a break through soon..but I have tried to contact people on this website with diagnosis years ago, they don't respond so I have ..so negitive I know..there is no cure.....sorry just pessimistic..me...
Don't be sorry @Plf! This disease is absolutely the most frustrating and sad and maddening and blehhhhhh, I could go on and on and we all could fill in the blanks with words to describe FFA! Plus it is made even more frustrating because it seems we have to pretty much self diagnose and treat ourselves.
I am going to get my hair cut and colored today, I used to love going to get my hair done and nowadays it is always so depressing afterwards :-(
As long as I am at home in my own mirror my hair doesn't look so bad to me ( also the sides and top are always powdered so no shiny scalp to be seen) but sitting in the salon's chair with my hair freshly washed and no powders or anything and the bright lights, ughhh, it is always 6-8 weeks huge wake up call as to how FFA is steadily creeping along, making my hair thinner and thinner and less and less.
Ladies, forget the meds and trying to understand. I cannot fully say I have all good days but since adjusting to my wig which I have had for about a month now I am moving forward better. Here is why. I am not spending time dwelling on this, taking stuff that doesn’t work, working with clip in pieces that yes, do look good and did solve the problem for awhile , but were not as comfortable and required changing, adjusting, and eventually taping, as the loss progressed and changed. I have a blend of synthetic and human. Wash and wear as it were. Put on in seconds. Sleep in it if you need to (like when grandchildren do sleep overs!). Wake up and put it on. Lightweight, fitted (I have a great hairdresser / wig, hairpiece person, who hand sews it to fit perfectly). So, my best advice after dealing with this for four years now, take your money and time and find a good person like I did to help you look and feel like you. I certainly cannot say this is the 100% solution but it is what it is. Yes, I am still sad and incredibly frustrated this happened to me. But..... in the meantime my hairdresser and derm are working to get me reimbursed through my insurance too.
Sad, I couldn’t agree with you more!! There is something to be said for the “acceptance” stage of grieving. After years of lotions, potions and powders, I finally got an official diagnosis. Once I had that, I had a major cry and then decided to invest in a bonded hair piece. Best decision ever made in regards to my FFA. I feel like my old normal self with hair, I get lots of compliments and no one knows it isn’t my hair unless I choose to share my story. Am I still bewildered as to how I “got” this thing! Yep! Do I still feel sad? Some days, yes. But I had to move past the grief and live life the best I can! I have a husband, step kids, grandchildren, and elderly mom, a great job - all who need me at my best. So I do what I need to do to take care of my health and my hair and move on. Life’s too short to dwell on what we can’t control. We have to find our peace. Sent with complete understanding and love for all who struggle with this crazy FFA.
I look forward to meeting up at the CARF Conference CurlyK. I can't imagine my scalp would tolerate bonding as it reacts to the little clips when trying on a topper. Will you be at the Show & Share after lunch on Sunday to share info. My taped on Mini Hair Pieces in the front get me though life without thinking about "it". But I realize that is not the final solution as "it" progresses.
I have a mobile hairdresser, who comes to the house to do my hair - so I am no longer subjected to the ordeal of others seeing my lack of hair at the front of my head.
@ Sad in Chicago & @ CurlyK, I love, love, love your attitudes!
I try my best to be the same, but sometimes this stupid FFA can get me down- but I totally agree, no point in dwelling on and wasting time and energy and money on something that cannot be changed, it is time to move on, make the best of a bad situation and live life, there is only the one we are given and it is not like we can come back and do it again better next time around.
@Airam, that would be so cool to have a hairdresser come to my house! But I am in a rural area and there is no such thing round here :-(
Actually, my hairdresser and I decided yesterday to try making my roots a shade or two darker then is normally done and she did more "strategic cutting" for the front of my ears to make it look like my hair is "really" there and it looks very good. Having the darker roots makes my hair look thicker and cutting "sideburn-ish" sides in front of the ears hides the loss- the powder on the sides and my part helps tremendously too!
This is all new to her also, so there is some trial and error, but each time in the chair we both are learning a little more on the smoke and mirrors effect of trying to disguise this hair loss as long as we can.
Me - I got bangs cut into my curly long hair which seems to hide the scrappy-holey forehead thing a bit better. I moved last September and haven't yet found that complicit-intimate hair person who can accompany through this freakish journey. So my bangs were cut by old hair person who is next to my office (where I commute to work three days a week, two hours from home. Yes, yuck)
Hey ya all. I'm (unfortunately) a new member of this sisterhood of the mystery frontal hair loss. I've had frontal hair loss for about 5 years, but just newly diagnosed by a dermatologist in Germany (I'm from Denmark). He only wanted to take a biopsy if I insisted, as he had no doubt by just looking at my scalp that I indeed belongs to this dreaded FFA-club.
The doctor gave me some steroid ointment to use on the follicle twice a day and then come back for another consultation in about three months and then maybe look into the stronger drugs. I've used the cream but it makes my follicle all red and itchy so I've stopped again.
Like many of you, I'm really hesitant to use the stronger medication for this. Especially because it doesn't cure it and there's no guarantee it will even slow the progress down. And somehow it just doesn't seem logical to me to fill my body with chemical when clearly something in my system is already off. - But I may change my perspective on this over time.. I've tried Minoxidil about a year ago. It gave me a rapid heartbeat and headache so I stopped. It actually didn't do that much for my progressive hairline and I also hated the concept that this would be for life. So it felt more than ok to stop that treatment.
The dermatologist told me that FFA is not an auto-immune disorder. Which really confused me as I thought it was?? I didn't have the time to ask him more in depth about this. However I still believe there's something in ones immune system that is off and for some reason attacks the follicle.
So I'm trying to eat healthy and thinking about not to add inflammation in my body with the food (without being fanatic..life is tough already so no reason to make it tougher by denying yourself the pleasure and joy from chocolate and icecream;).
I've just started to take Moducare three times a day. Hopefully it will help my immune system to be in balance (if it is off - I don't know if it is and it seems like nobody does..oh well). I've also just started to use CBD/CBA-oil to my hairline (thanks for the tip, Robin). And for a long time I've used castor oil on my brows. They are still almost intact. I've just bought a dermaroller and I'm debating with myself if I should give it a go on my hairline. I've also just purchase a Virulite for cold sores and I'll probably try to use it on my hairline just out of curiosity. As it says the light will help the immune system.. I rebound on a Bellicon as a daily activity to help with lymph-drainage and to get the blood flowing.. Well, that's my adult excuse, really I do it because it makes me giggle. I also take turmeric daily for its supposedly anti-inflammatory benefit.
I recently read an article about using Low Dose Naltrexone to Lichen Planoparis. As LP is thought to be related to FFA I'm really curious if some of you have tried LDN and how it worked for you?? I'm thinking about asking my doctor if I can try it as an alternative to the stronger drugs he suggested.
I really hate this FFA as its so much more than just hair you're losing. This is really not the scenario I had seen for myself and my beloved red curly locks (ouch!). I've done my fair share of grief and is still in the process of taking this new reality in and to just accept what is. Some days I manage pretty well and have fun with scarfs and headbands, other days I have a big knot in my stomach when I think about it and feel so so sad and unreal about it (what the heck is happening in my body?!) and well other times I reach a state of denial. Which I think is actually ok as a coping strategy for as long as it's possible.. It's been so comforting to read all your posts. To know I'm not alone and know other women (and some men) are going through this mystery and are willing to share their journey has been really helpful to me. So thank you for being here!
Hi @Miss Mymble, I am so sorry you are here- but you've found a great group for helping to deal with this horrible FFA, these ladies are awesome and I totally agree, life is too short to deny yourself chocolate and ice cream!
@CurlyK, thank you again for sharing with us what happens at CARF :-)
@Halfbakedwho, I hope you can find a good hairdresser closer to home and ugh, yes- your commute sounds awful :-(
I just got off the phone with my sister who lives in Vegas, who refused to look for cannabis tincture for me (legal there). I can understand that, but it was the mockery and sarcasm that weren’t so great. You know.
Happy CARF weekend, CurlyK! I will be thinking of you and Wyobalance, you lucky hairless ducks. Said with all respect and affection ; )
We had a reception tonight at the CARF conference where I met some wonderful ladies! It has already filled my heart up to meet people who are part of this crazy bizarre thing called cicatricial alopecia. It’s like meeting your long lost best friend and instantly diving right in like no time has passed. Tomorrow will be a long, full day of information. I look forward to sharing what I learn with all of you beautiful ladies!
Thanks for welcoming me into your group. It sounds indeed like this is a warm and supportive place.
@Halfbakedwho, I'm so sorry you received such an insensitive response from your sister, when you reached out for help. I guess some people don't really understand how tough this situation is and that it actually takes courage to ask for help. I'm sure some people also get confronted with their own vulnerability, shame and lack of self-worth when being confronted with this issue (even when they are not the one dealing with it firsthand) and to protect themselves from these feelings response in a harsh way. Well, maybe that's not the case with your sister. I'm just rambling.. Nevertheless, a response like that is not what's needed.
Cannabis oil with THC is not legal in Denmark (yet..), so I just try an oil with CBD and CBA. It still should have anti-inflammatory benefits. Is an oil like that legal in France? If so it may be worth a try.
@CurlyK, it's so cool you attend the conference and are so generous with what you want to share from it. It's greatly appreciated! It sounds absolutely wonderful the way you describe the way you ladies relate to each other at the conference.
I'm also now getting curious about this cannabis oil tincture after reading @Robin's post-
I guess I should take a look on google and see what the story is, I'm in upstate NY and I am pretty sure I might be able to get it with a prescription here, well maybe, I dunno? Anyway, it is supposed to be a bit like a wonder drug from what I've been hearing about on the news and such.
Though I was down in NYC not so long ago and could've just stood on a street corner breathing in the smoke from the weed being smoked all around me now that it is not being prosecuted down there, ugh it stunk so badly- hate that smell!!
& @Halfbakedwho, I'm also sorry about your sister too, a little support goes a long way, especially when siblings are halfway across the world from each other :-(
@ Miss Mymble, interesting about low dose naltrexone, have to google that one too! Seriously, how was I ever able get through one single day without google?
Hi Robin, I am looking at CBD oils on line. It looks as though they are taken by drops on the tongue. Is that how your CBD oil is normally used? And you are trying the drops on your hairline? Do you take by mouth, as well? I'm looking at 100 mg./the lowest available. Thank you!
I’m sooo glad I went to the CARF conference! Full of helpful, empowering information and I made so many new friends! I’m working on my discussion post now. I have a two hour flight home so I hope to get it mostly done for you. Hugs to all!!!
So pleased curlyk that you enjoyed and benefitted from the conference. Thank you for thinking of us. I look forward to any info that you can share when your feet touch the ground!
Welcome to the group Miss Mymble. I’ve not tried naltrexone. I too scout the internet for journal articles and have found Donovan to share relevant information. When I asked my dermatologist her thoughts on some recent research on FFA she was unaware of it and asked me to forward the information....i think it’s highly unprofessional that she is not up to date or at least tries to be...I have visited her at least 4 times in 6 months and she must at least know by now I will ask pertinent questions. I had to ask to be prescribed hydroxychloroquine etc etc I despair!!!!!!
Minter & Halfbaked I will look forward to hopefully meeting you in London at the event you mentioned.
I wish for a symptom free week (lifetime!!) for everyone and well deserved respite from FFA/LPP. Xxx
yes well, my sister is not known for her sensitivity and kindness. She thought it was a joke. Thank you for your support. The patch on the top of my head is growing, but again others are so nice and say they really don't notice it. I will be in D.C. this coming Saturday! My sister is meeting me there.
Hey Minter where are you in NY State? I grew up in Binghamton. I actually really like the smell of weed, though I am too old-fogey and paranoid to smoke it anymore ; ). The castor oil I have on my head right now smells pretty smokey too...
thank you so much for the naltrexone info Miss Mymble! I am not sure I want to take it but I'll look into it.
So glad you had a good time CARF-ing, CurlyK, and Afraid, maybe yes I will see you in London!
Curly K, I just want to thank you for the detailed report and info you posted from Carf Conference. There is quite a lot of info there and I will have a better read after printing off.... It must have been so good to talk& mingle with others who are/have been going through all the similar challenges this disorder creates in our lives....thanks again!
Wow @CurlyK! Thank you so much for taking the time to share all this info! I took a quick look as I'm heading out the door soon, but shall read it carefully tonight. One thing I did catch was not to use tea tree or peppermint oil on the scalp, ugh I use both :-( no more, will switch to witch hazel/apple cider vinegar! Looking forward to reading all the notes tonight :-)
@Halfbakedwho, it is nice you will be able to meet your sister in DC, seeing your hair in person will allow her to see what is happening for real to you! I am near Albany and haha I think I have always been too old-fogey and paranoid to go anywhere near weed! But still will look into the tinctures ;-) Enjoy DC, have never been, but will get there someday, hopefully during cherry blossom time!
@Liverette I saw your message but I couldn’t figure out how to reply back to you. Hopefully, you’ll see this. I had really bad hot flashes and night sweats. They got under control with HRT even though my dr isn’t fond of HRT. My quality of life needed hormones!
To the ladies who live in a warm climate-you have my sympathies. I’ve been in the Midwest/east coast for 3 weeks. It’s been a long time since I’ve been in a hot and humid climate. Since I’ve been traveling I’ve been in different cities with different water and have wondered if in combo with the heat-is this why my head feels on fire again? I missed 2 days of Castor Oil and developed a spot on the right side of my head that hurt so much it gave me a headache. After 3 days of Clobetasol and back on Castor Oil it feels better. In this heat my hair looks thinner, flatter ugh...I’ll be home soon. Yay!
Afraid
Hi, my dermatologist (who seems to know next to nothing about FFA and far less than our collective knowledge or my own research on the internet) has after 7 months, highly significant hair loss and 6 months of taking hydroxychloroquine and using clobestal has suggested doxycycline and steroid injections (although there is a two month waiting list) what are your thought? Has anyone had any success with either? Many thanks
May 23, 2018
AnnieMay
Hello lovely and courageous ladies,
I have also been reading everyones posts and hope to hear more from those going to the conference. So many ups and downs with this awful disease and today was a down day for me. I try to stay positive but my confidence is at a low point. I saw this today and my hope is that a celebrity will bring more attention to alopecia.
I know we all say this many times but just knowing you are all out there across the world sharing the same issues and thoughts that I am as we all navigate our way through this is just so huge to me. This is a condition that affects us all in so many ways. I would be lost without all of you so thank you. https://www.racked.com/2018/5/24/17386756/celebrities-jada-pinkett-...
May 24, 2018
Wyobalance
AnnieMay, that is a most interesting website. What if all hair enhancement companies went out of business. What would TV and Movie personalities really look like.
For those bloggers that are not currently CARF members, here is a short pre-conference video they made: https://www.youtube.com/watch?v=TtpN0jHKECI&feature=youtu.be&am...
May 27, 2018
Halfbakedwho
Hi everyone long time no write, b/c honestly there are times I just want to check out and not think about my forking hair (and watch The Good Place, can you tell?)
Curly K, I am so glad you are going to the CARF conference for us. 250$ sounds normal to me too. How often do you have to get your hair taken off and put back on? When I went to learn about your bonding system, they said I would need two hair pieces. Do you have this too?
Illust8r; I am feeling more and more numbness on my sides, and the same issue with thinning on top to the midpoint of my head.
That article is very interesting on the different patterns of FFA. I am in pattern 2 very clearly, with eyebrows, without facial papules.
The numbness is so weird, so weird... what the hell *is* this creeping crud crawling along our hair follicles? No you don’t have to answer that.
I admit I am falling off of my prescribed regimen of Clobéstal and tetracycline, mostly from a sort of puttering-out fatalism, and feeling I’m being taken for a fool by the dermatologists, who though well-meaning (I hope) and apparently well-informed (well... maybe) are just throwing crap at me so I feel like *someone* is doing *something*.
Which is why I’m looking forward to some honest info from CARF. If no one knows what the hell they’re doing I’d at least prefer to hear it from people who are honestly trying to figure this out, rather than those who are covering themselves (and me) with steroids, minoxidil, and various lotions and potions.
Cheers my friends : )
May 27, 2018
CurlyK
Hey gals! Here's some answers to your questions.
1. Menopause. I agree there has GOT to be some connection. My hair started changing after I had my hysterectomy in 2008. I will ask about this at CARF.
2. How often I take my hairpiece off. Everyone is a little different - it depends on how dry or oily you are. Some ladies need to go in every 3 weeks. I go every 5 - and can honestly go 6-7 (I'm dry). I only have one hair piece. Never heard of having two...?
3. The place I go (Custom Hair Tampa Bay) specifically helps women with hair loss from cancer treatment or alopecia. You can google them and see their website. I found them by googling hair replacement.
4. I still have some of my natural hair on the sides and back but its thin. My hair piece pretty much is what everyone sees now. I'm excited to go be with people who know what its like to live with this - and to hear from researchers and doctors who are trying to find us answers.
May 27, 2018
Plf
Thanks curlyK, for all your insight and positivity, about to loose another cm on the front of my hairline..grrr, although I have decided not to go down the line of drugs and know it will mean a wig I am still in the fingers crossed mode it's just going to stop aka denial, enjoy the conference and thanks for your feedback.
May 28, 2018
Halfbakedwho
`Hey Plf if it’s any consolation I’m in the same place right now. The little creepy red dots are inflamed on top of my head, and I want ice cream to make it go away. Because it’s 9PM and at night I obsess and ice cream helps. I apply it directly to the red dots, and I swear it works just as well as all that cortisol nastiness. Then when it melts down my face it actually tastes good.
My humour is a manic defense against depressive anxiety, BTW.
CurlyK - the thing that worries me - I tend to develop allergies - and I’m worried that I would become allergic to the glue. Another thing to worry about (can I glue it on with ice cream ... sorryyyyyy). So, please tell me that the glue they use is absolutely non-allergenic, right? Please?
Thank you for your excellent information : )
May 28, 2018
CurlyK
Halfbakedwho, I will ask about the glue when I go in in a few weeks. I’m not sure about that one other than I can tell you that it’s never bothered me. Sometimes my scalp gets irritated and I have to pat my head sometimes. (can’t scratch it like normal) But it’s never been so bad I couldn’t stand to wear it.
May 28, 2018
Halfbakedwho
And it looks really nice, CurlyK - it really helps to see your picture - it’s extremely reassuring.
I ask too b/c recently I had to have my foot wrapped in athletic tape, and after about 3 weeks, I developped an allergy and couldn’t use it anymore - an allergy to the glue in the tape.
I suppose it’s silly for me to worry about yet another thing with this problem, but it’s hard to not worry. Like not thinking about pink elephants or whatever...
May 28, 2018
Halfbakedwho
I am making up for lost time I think (not having written in awhile).
The thread above on the cannabis tincture is very interesting.
I am feeling very ambivalent right now. The doctor (the famous one) I saw last February prescribed very little medicine, and I am having another flare-up - and I admittedly haven’t been consistent in following his regimen (steroid lotion and antibiotics). My impression is that he doesnt’ think it’s possible to stop the loss, and b/c he does hair grafts he doesn’t seem to care one way or another (though who knows what he thinks really...). I called about a month back telling him that my scalp was still bumpy and red, and he said it was « too soon » for the meds to have any effect. I found this a bit facile...
The dermatologist I had before threw the whole diagnostic book of potions at me... did I lose less hair? I don’t know, but maybe having a lot of stuff to put on my scalp made me *feel* like I was doing the right thing. She also had a better bedside manner, she also wanted to do a biopsy. It’s now too late in the season for a biopsy (she won’t do them in the summer b/c scarring).
I am scared again - it comes and goes. Part of it is feeling at times that the hair loss happens so fast; other times I suppose I just don’t notice. I am coming to the States in mid-June and will see my sister (who is beautiful and has all of her hair of course) and that could be why I am more upset right now.
I think I might go back to derm 1...
As long as I’m writing a novel... I will add that I can’t stand hormone therapies (I bloat up, I get irritable, my digestion is a mess), but yet I’m thinking I *should* try that again.
It’s midnight and I should stop here. There are times though where I just think « how can this be happening, this is just insane, I will make it stop now. » I suppose delusional-denial thinking is about as effective (for me) as anything else, so there’s that... : /
May 29, 2018
CurlyK
Halfbakedwho, are you coming anywhere near Florida?
May 29, 2018
Halfbakedwho
CurlyK I will be in D.C.
My mom lives in Boca though so I may get back down there at some point. I'm from Upstate NY and also grew up in Philly, went to college in NYC, then lived in Maryland, now I live in France (for 20 years now). Where are you in Florida?
May 30, 2018
CurlyK
I’m right in between Tampa and Orlando. If you are ever this way, let me know!
May 30, 2018
Jess
Hi All,
Has anyone else noticed an increased sensitivity to sun? I recently went on a trip that included visiting Black Canyon City, AZ to see Saguaro cacti (super cool!). I was not in the sun much, but did spend about 10 minutes taking pictures in direct sunlight. That night I had what appeared to be an allergic reaction of sorts on my face: itchy, red, swollen, etc. At first, I thought my rosacea was acting up, but I started to realize it was definitely something else. I had tried some new sunscreen on the trip (Physician's Formula Translucent Powder with Titanium Dioxide and Andalou Naturals 1000 Roses Daily Shade) but the active ingredients were nothing I haven't used in other products.
My face was inflamed for almost a week, and I ended up going to the doctor. I was prescribed 5 days of oral steroids and told to take anti-allergens twice a day. All of it helped, especially the steroids, and it went away. I have not used the sunscreen since, but not long after I walked four blocks in direct sunlight and my face got irritated again. What gives?? Is the related to FFA or maybe just another autoimmune issue? I'm thinking of forgoing a trip with my sisters in August because I don't want to be out in the sun : ( On a side note, my FFA papules seem to have gotten better after taking the steroids. I wonder if it's a coincidence and how long it will last. So many mysteries...
Jun 4, 2018
BubbaLu
Jess,
i play golf so I am outside a lot and have not noticed this issue. I wear a facial sunscreen that is available on line and it is made for skin prone to acne, rosacea and hyperpigmentation. Elta MD Skincare. I highly recommend it and you can get it tinted or clear.
i was trying to upload an image, not working out so well.
Jun 4, 2018
Afraid
I’m throwing everything I can at this horrendous condition and it continues to proceed at a rapid pace!! I try to be hopeful but so hard when hair is literally disappearing in front of me. I had no idea the pace would be so rapid. If it was a possibility I would embrace life as a hermit in complete contrast to my once sociable self... how can this be happening? Sorry this sounds so self absorbed....boohoo!!!!!!!!!!!!!!
Jun 5, 2018
Liz
I went to see the lovely Dr Wong in London today who has an interest in FFA and has attended the CARF meeting when it was held in London. She has organised a day in London in September where experts in all areas of Alopecia (medica/psychological /beauty etc) will be talking about what they do. If you go on the following website you can view the details. It's expensive but looks interesting... I'll be popping along. www.getaheadofhairloss.com
Jun 5, 2018
Afraid
Thanks Liz. It looks interesting, although I’ll be wearing a wig by then!!! It would be great to meet up.
Jun 5, 2018
Beez
As I see more 'inroads' along my hairline this week, I am so damn frustrated and angry. What is the point of all these doctor's appointments and conferences, these unproven theories (e.g. Sunscreen), untested treatments, very little research!? Sorry folks, I am in a bad way today. Feeling ugly. The loss is slow but it marches on.
I am considering homeopathic treatment as in the past I have had some success with homeopathic medicines when traditional meds failed. Anyone know of a good homeopathic practioner in the mid-Atlantic to north-eastern area of the US?
Jun 5, 2018
Jess
Thanks, BubbaLu! I'll check it out.
Jun 6, 2018
Halfbakedwho
I am going to look into the London conference. I too Beez am seeing a lot of "inroads". Loss is slow and marches on - as you say exactly. I need to be more consistent in taking my treatments, but (I repeat myself, and many of you) since they don't seem to make any difference I let it slide. That being said I should try harder with the castor oil. It's just so damn greasy - and I'll need to shampoo daily, making it a bit moot since my hair is dry and I shouldn't shampoo every day.
However, I did go ahead and schedule with my first dermatologist at the specialized clinic in Paris, moving away from Dr. Famous Man. She wanted a biopsy, she wanted to throw the whole kaboodle of diagnostic solutions both proven and unproven, but hey she was thorough, scary-thorough.
The middle of the night is hardest.
I don't know what to say that hasn't been said already. I throw up my hands, I smack my forehead (six fingers now), I pass...
Jun 6, 2018
Plf
Hi all, yes totally frustrated by FFA, the problem is that it is totally in your face..no irony there..you see it's stupid effects every day...as I have said before ..given up on miricle treatment s, deatologist just push their treatment s don't care re side effects..it sucks..hope there is a break through soon..but I have tried to contact people on this website with diagnosis years ago, they don't respond so I have ..so negitive I know..there is no cure.....sorry just pessimistic..me...
Jun 6, 2018
Minter
Don't be sorry @Plf! This disease is absolutely the most frustrating and sad and maddening and blehhhhhh, I could go on and on and we all could fill in the blanks with words to describe FFA! Plus it is made even more frustrating because it seems we have to pretty much self diagnose and treat ourselves.
I am going to get my hair cut and colored today, I used to love going to get my hair done and nowadays it is always so depressing afterwards :-(
As long as I am at home in my own mirror my hair doesn't look so bad to me ( also the sides and top are always powdered so no shiny scalp to be seen) but sitting in the salon's chair with my hair freshly washed and no powders or anything and the bright lights, ughhh, it is always 6-8 weeks huge wake up call as to how FFA is steadily creeping along, making my hair thinner and thinner and less and less.
Jun 6, 2018
Sad in chicago
Ladies, forget the meds and trying to understand. I cannot fully say I have all good days but since adjusting to my wig which I have had for about a month now I am moving forward better. Here is why. I am not spending time dwelling on this, taking stuff that doesn’t work, working with clip in pieces that yes, do look good and did solve the problem for awhile , but were not as comfortable and required changing, adjusting, and eventually taping, as the loss progressed and changed. I have a blend of synthetic and human. Wash and wear as it were. Put on in seconds. Sleep in it if you need to (like when grandchildren do sleep overs!). Wake up and put it on. Lightweight, fitted (I have a great hairdresser / wig, hairpiece person, who hand sews it to fit perfectly). So, my best advice after dealing with this for four years now, take your money and time and find a good person like I did to help you look and feel like you. I certainly cannot say this is the 100% solution but it is what it is. Yes, I am still sad and incredibly frustrated this happened to me. But..... in the meantime my hairdresser and derm are working to get me reimbursed through my insurance too.
Jun 6, 2018
CurlyK
Sad, I couldn’t agree with you more!! There is something to be said for the “acceptance” stage of grieving. After years of lotions, potions and powders, I finally got an official diagnosis. Once I had that, I had a major cry and then decided to invest in a bonded hair piece. Best decision ever made in regards to my FFA. I feel like my old normal self with hair, I get lots of compliments and no one knows it isn’t my hair unless I choose to share my story. Am I still bewildered as to how I “got” this thing! Yep! Do I still feel sad? Some days, yes. But I had to move past the grief and live life the best I can! I have a husband, step kids, grandchildren, and elderly mom, a great job - all who need me at my best. So I do what I need to do to take care of my health and my hair and move on. Life’s too short to dwell on what we can’t control. We have to find our peace. Sent with complete understanding and love for all who struggle with this crazy FFA.
Jun 6, 2018
Wyobalance
I look forward to meeting up at the CARF Conference CurlyK. I can't imagine my scalp would tolerate bonding as it reacts to the little clips when trying on a topper. Will you be at the Show & Share after lunch on Sunday to share info. My taped on Mini Hair Pieces in the front get me though life without thinking about "it". But I realize that is not the final solution as "it" progresses.
Jun 6, 2018
Airam-FFA
Hi Minter
I have a mobile hairdresser, who comes to the house to do my hair - so I am no longer subjected to the ordeal of others seeing my lack of hair at the front of my head.
xOx
Jun 6, 2018
Minter
@ Sad in Chicago & @ CurlyK, I love, love, love your attitudes!
I try my best to be the same, but sometimes this stupid FFA can get me down- but I totally agree, no point in dwelling on and wasting time and energy and money on something that cannot be changed, it is time to move on, make the best of a bad situation and live life, there is only the one we are given and it is not like we can come back and do it again better next time around.
Jun 7, 2018
Minter
@Airam, that would be so cool to have a hairdresser come to my house! But I am in a rural area and there is no such thing round here :-(
Actually, my hairdresser and I decided yesterday to try making my roots a shade or two darker then is normally done and she did more "strategic cutting" for the front of my ears to make it look like my hair is "really" there and it looks very good. Having the darker roots makes my hair look thicker and cutting "sideburn-ish" sides in front of the ears hides the loss- the powder on the sides and my part helps tremendously too!
This is all new to her also, so there is some trial and error, but each time in the chair we both are learning a little more on the smoke and mirrors effect of trying to disguise this hair loss as long as we can.
Jun 7, 2018
Halfbakedwho
Me - I got bangs cut into my curly long hair which seems to hide the scrappy-holey forehead thing a bit better. I moved last September and haven't yet found that complicit-intimate hair person who can accompany through this freakish journey. So my bangs were cut by old hair person who is next to my office (where I commute to work three days a week, two hours from home. Yes, yuck)
Jun 7, 2018
Miss Mymble
Hey ya all. I'm (unfortunately) a new member of this sisterhood of the mystery frontal hair loss.
I've had frontal hair loss for about 5 years, but just newly diagnosed by a dermatologist in Germany (I'm from Denmark). He only wanted to take a biopsy if I insisted, as he had no doubt by just looking at my scalp that I indeed belongs to this dreaded FFA-club.
The doctor gave me some steroid ointment to use on the follicle twice a day and then come back for another consultation in about three months and then maybe look into the stronger drugs.
I've used the cream but it makes my follicle all red and itchy so I've stopped again.
Like many of you, I'm really hesitant to use the stronger medication for this. Especially because it doesn't cure it and there's no guarantee it will even slow the progress down. And somehow it just doesn't seem logical to me to fill my body with chemical when clearly something in my system is already off. - But I may change my perspective on this over time..
I've tried Minoxidil about a year ago. It gave me a rapid heartbeat and headache so I stopped. It actually didn't do that much for my progressive hairline and I also hated the concept that this would be for life. So it felt more than ok to stop that treatment.
The dermatologist told me that FFA is not an auto-immune disorder. Which really confused me as I thought it was?? I didn't have the time to ask him more in depth about this.
However I still believe there's something in ones immune system that is off and for some reason attacks the follicle.
So I'm trying to eat healthy and thinking about not to add inflammation in my body with the food (without being fanatic..life is tough already so no reason to make it tougher by denying yourself the pleasure and joy from chocolate and icecream;).
I've just started to take Moducare three times a day. Hopefully it will help my immune system to be in balance (if it is off - I don't know if it is and it seems like nobody does..oh well).
I've also just started to use CBD/CBA-oil to my hairline (thanks for the tip, Robin).
And for a long time I've used castor oil on my brows. They are still almost intact.
I've just bought a dermaroller and I'm debating with myself if I should give it a go on my hairline.
I've also just purchase a Virulite for cold sores and I'll probably try to use it on my hairline just out of curiosity. As it says the light will help the immune system..
I rebound on a Bellicon as a daily activity to help with lymph-drainage and to get the blood flowing.. Well, that's my adult excuse, really I do it because it makes me giggle.
I also take turmeric daily for its supposedly anti-inflammatory benefit.
I recently read an article about using Low Dose Naltrexone to Lichen Planoparis. As LP is thought to be related to FFA I'm really curious if some of you have tried LDN and how it worked for you?? I'm thinking about asking my doctor if I can try it as an alternative to the stronger drugs he suggested.
I really hate this FFA as its so much more than just hair you're losing.
This is really not the scenario I had seen for myself and my beloved red curly locks (ouch!). I've done my fair share of grief and is still in the process of taking this new reality in and to just accept what is. Some days I manage pretty well and have fun with scarfs and headbands, other days I have a big knot in my stomach when I think about it and feel so so sad and unreal about it (what the heck is happening in my body?!) and well other times I reach a state of denial. Which I think is actually ok as a coping strategy for as long as it's possible..
It's been so comforting to read all your posts. To know I'm not alone and know other women (and some men) are going through this mystery and are willing to share their journey has been really helpful to me. So thank you for being here!
Jun 7, 2018
CurlyK
Good morning ladies! Today starts my adventure to the CARF conference! I am beyond excited to learn and meet new friends!!!
I have everyone’s questions typed up and I intend to post a daily update in the discussion forum section of our board.
Hugs to all and I’ll post something later tonight!
Jun 8, 2018
Plf
Thankyou so much curly K, hope there is something new but also enjoy the warmth & friendship of the conference, your positivity is amazing
Jun 8, 2018
Minter
Hi @Miss Mymble, I am so sorry you are here- but you've found a great group for helping to deal with this horrible FFA, these ladies are awesome and I totally agree, life is too short to deny yourself chocolate and ice cream!
@CurlyK, thank you again for sharing with us what happens at CARF :-)
@Halfbakedwho, I hope you can find a good hairdresser closer to home and ugh, yes- your commute sounds awful :-(
Jun 8, 2018
Halfbakedwho
Welcome to Miss Myble!
I just got off the phone with my sister who lives in Vegas, who refused to look for cannabis tincture for me (legal there). I can understand that, but it was the mockery and sarcasm that weren’t so great. You know.
Happy CARF weekend, CurlyK! I will be thinking of you and Wyobalance, you lucky hairless ducks. Said with all respect and affection ; )
Jun 8, 2018
CurlyK
We had a reception tonight at the CARF conference where I met some wonderful ladies! It has already filled my heart up to meet people who are part of this crazy bizarre thing called cicatricial alopecia. It’s like meeting your long lost best friend and instantly diving right in like no time has passed. Tomorrow will be a long, full day of information. I look forward to sharing what I learn with all of you beautiful ladies!
Jun 8, 2018
Miss Mymble
Thanks for welcoming me into your group. It sounds indeed like this is a warm and supportive place.
@Halfbakedwho, I'm so sorry you received such an insensitive response from your sister, when you reached out for help. I guess some people don't really understand how tough this situation is and that it actually takes courage to ask for help. I'm sure some people also get confronted with their own vulnerability, shame and lack of self-worth when being confronted with this issue (even when they are not the one dealing with it firsthand) and to protect themselves from these feelings response in a harsh way. Well, maybe that's not the case with your sister. I'm just rambling.. Nevertheless, a response like that is not what's needed.
Cannabis oil with THC is not legal in Denmark (yet..), so I just try an oil with CBD and CBA. It still should have anti-inflammatory benefits. Is an oil like that legal in France? If so it may be worth a try.
@CurlyK, it's so cool you attend the conference and are so generous with what you want to share from it. It's greatly appreciated! It sounds absolutely wonderful the way you describe the way you ladies relate to each other at the conference.
Jun 9, 2018
Miss Mymble
Jun 9, 2018
Miss Mymble
I've just downloaded a screenshot from donovanmedical.com about Low Dose Naltrexone.
Am I the only one who is curious and interested in LDN for FFA? Or do some of you have already tried it?
Jun 9, 2018
Minter
I'm also now getting curious about this cannabis oil tincture after reading @Robin's post-
I guess I should take a look on google and see what the story is, I'm in upstate NY and I am pretty sure I might be able to get it with a prescription here, well maybe, I dunno? Anyway, it is supposed to be a bit like a wonder drug from what I've been hearing about on the news and such.
Though I was down in NYC not so long ago and could've just stood on a street corner breathing in the smoke from the weed being smoked all around me now that it is not being prosecuted down there, ugh it stunk so badly- hate that smell!!
& @Halfbakedwho, I'm also sorry about your sister too, a little support goes a long way, especially when siblings are halfway across the world from each other :-(
@ Miss Mymble, interesting about low dose naltrexone, have to google that one too! Seriously, how was I ever able get through one single day without google?
Jun 9, 2018
Anonymous
Hi Robin, I am looking at CBD oils on line. It looks as though they are taken by drops on the tongue. Is that how your CBD oil is normally used? And you are trying the drops on your hairline? Do you take by mouth, as well? I'm looking at 100 mg./the lowest available. Thank you!
Jun 10, 2018
CurlyK
I’m sooo glad I went to the CARF conference! Full of helpful, empowering information and I made so many new friends! I’m working on my discussion post now. I have a two hour flight home so I hope to get it mostly done for you. Hugs to all!!!
Jun 10, 2018
PBsunshine1
Curly K can't wait to hear from you
Jun 10, 2018
Afraid
So pleased curlyk that you enjoyed and benefitted from the conference. Thank you for thinking of us. I look forward to any info that you can share when your feet touch the ground!
Welcome to the group Miss Mymble. I’ve not tried naltrexone. I too scout the internet for journal articles and have found Donovan to share relevant information. When I asked my dermatologist her thoughts on some recent research on FFA she was unaware of it and asked me to forward the information....i think it’s highly unprofessional that she is not up to date or at least tries to be...I have visited her at least 4 times in 6 months and she must at least know by now I will ask pertinent questions. I had to ask to be prescribed hydroxychloroquine etc etc I despair!!!!!!
Minter & Halfbaked I will look forward to hopefully meeting you in London at the event you mentioned.
I wish for a symptom free week (lifetime!!) for everyone and well deserved respite from FFA/LPP. Xxx
Jun 11, 2018
Halfbakedwho
yes well, my sister is not known for her sensitivity and kindness. She thought it was a joke. Thank you for your support. The patch on the top of my head is growing, but again others are so nice and say they really don't notice it. I will be in D.C. this coming Saturday! My sister is meeting me there.
Hey Minter where are you in NY State? I grew up in Binghamton. I actually really like the smell of weed, though I am too old-fogey and paranoid to smoke it anymore ; ). The castor oil I have on my head right now smells pretty smokey too...
thank you so much for the naltrexone info Miss Mymble! I am not sure I want to take it but I'll look into it.
So glad you had a good time CARF-ing, CurlyK, and Afraid, maybe yes I will see you in London!
Bonne nuit et bises,
Jun 11, 2018
CurlyK
I posted my notes on the CARF conference in the discussion board section. I guess someone has to approve it first before it shows up.
Jun 11, 2018
Jules Australia
Curly K, I just want to thank you for the detailed report and info you posted from Carf Conference. There is quite a lot of info there and I will have a better read after printing off.... It must have been so good to talk& mingle with others who are/have been going through all the similar challenges this disorder creates in our lives....thanks again!
Jun 12, 2018
Minter
Wow @CurlyK! Thank you so much for taking the time to share all this info! I took a quick look as I'm heading out the door soon, but shall read it carefully tonight. One thing I did catch was not to use tea tree or peppermint oil on the scalp, ugh I use both :-( no more, will switch to witch hazel/apple cider vinegar! Looking forward to reading all the notes tonight :-)
@Halfbakedwho, it is nice you will be able to meet your sister in DC, seeing your hair in person will allow her to see what is happening for real to you! I am near Albany and haha I think I have always been too old-fogey and paranoid to go anywhere near weed! But still will look into the tinctures ;-) Enjoy DC, have never been, but will get there someday, hopefully during cherry blossom time!
Jun 12, 2018
Afraid
Thank you so much CurlyK such diligence and generosity. V much appreciated :-)
Jun 12, 2018
illustr8r
@Liverette I saw your message but I couldn’t figure out how to reply back to you. Hopefully, you’ll see this. I had really bad hot flashes and night sweats. They got under control with HRT even though my dr isn’t fond of HRT. My quality of life needed hormones!
To the ladies who live in a warm climate-you have my sympathies. I’ve been in the Midwest/east coast for 3 weeks. It’s been a long time since I’ve been in a hot and humid climate. Since I’ve been traveling I’ve been in different cities with different water and have wondered if in combo with the heat-is this why my head feels on fire again? I missed 2 days of Castor Oil and developed a spot on the right side of my head that hurt so much it gave me a headache. After 3 days of Clobetasol and back on Castor Oil it feels better. In this heat my hair looks thinner, flatter ugh...I’ll be home soon. Yay!
Jun 17, 2018