Halfbakedwho-all we can do is the best we can. Listen to your dr and listen to yourself-you’ll know what the best plan of action is. I’m limited by sub par Kidney function as to what drugs I can take and how much. Say they develop a cure, I don’t want to have lost some degree of kidney health trying to save my hair with a drug that ‘’might’ help. I would take a risk on one that will cure it once and for all.

my biggest flare was caused I think by the shock and stress of my hubby being laid off from his job after 18 years. He was laid off in January and I was in a major hair loss flare in February. Life happens and does this mean every bump in the road my hair falls out? I hope not! Hang in there. :)

would you guys mind sending - maybe privately if you prefer - your headband sites, or wiglet sites? When I look at the headbands they are huge and not adapted to just hair loss in the front. Are they a pain to wear every day? I am projecting myself down the road for six months/a year when it may become a part of every day getting dressed : ( !!!

HBW, I’m sorry you are going through this now also, I sympathize so much with you- it’s so freaking frustrating! I echo illustr8tr that you have to decide what is best for you, as each of us are going through the same thing yet it’s completely different for each of us if that makes sense!

I’m also one who has stopped all medications except for the odd use of Clobetasol only as a last result, I often use tea tree oil or a blend of peppermint oil & coconut oil on my hairline/scalp instead when it gets itchy along with on my forearms which are my other itchy spots.
My face is also ‘rough’ I’ve decided after the holidays I’m going to start treating myself to a facial every month or two, luckily I’ve found someone who is just starting out so her prices are very reasonable

:-)  so I can afford to do that! I can’t use retinol A or anything like that as my skin is too sensitive, but a facial every month or two, oh I’d like that please!

I get my lashes tinted too which is my little treat to myself and just got my brows microbladed in October which was The Best Thing I’ve done for myself since I’ve started with this stupid disease! The other Best Thing I’ve done for myself was 2 days ago when I got side pieces and bangs\fringe from Lucinda Ellery’s, I’m not thrilled about the every 6-8 weeks of maintenance/adjustments, but not having to hold my hair down when walking in the wind, and have to try and ‘artfully’ powder in ‘side hair’/front hairline & style it to hide the loss every. single.morning-well so far on day 2 I’m thrilled upon waking up with my new hair and I’m sure there will be ups and downs with it but faced with the alternative of life before helper hair vs after, right now I’m thinking that (hopefully) it will be worth it-  

it is so hard to decide what to do about the hair loss, try every medication there is, go with alternative medicine, do nothing- let it run it’s course, get a wig, don’t get a wig, shave it all off, who can say, each person’s experience with FFA is so different. This time next year I might decide to get more ‘hair’ or say take it off and shave it off. 

HBW, I’m sorry you are going through this now also, I sympathize so much with you- it’s so freaking frustrating! I echo illustr8tr that you have to decide what is best for you, as each of us are going through the same thing yet it’s completely different for each of us if that makes sense!

I’m also one who has stopped all medications except for the odd use of Clobetasol only as a last result, I often use tea tree oil or a blend of peppermint oil & coconut oil on my hairline/scalp instead when it gets itchy along with on my forearms which are my other itchy spots.
My face is also ‘rough’ I’ve decided after the holidays I’m going to start treating myself to a facial every month or two, luckily I’ve found someone who is just starting out so her prices are very reasonable

:-)  so I can afford to do that! I can’t use retinol A or anything like that as my skin is too sensitive, but a facial every month or two, oh I’d like that please!

I get my lashes tinted too which is my little treat to myself and just got my brows microbladed in October which was The Best Thing I’ve done for myself since I’ve started with this stupid disease! The other Best Thing I’ve done for myself was 2 days ago when I got side pieces and bangs\fringe from Lucinda Ellery’s, I’m not thrilled about the every 6-8 weeks of maintenance/adjustments, but not having to hold my hair down when walking in the wind, and have to try and ‘artfully’ powder in ‘side hair’/front hairline & style it to hide the loss every. single.morning-well so far on day 2 I’m thrilled upon waking up with my new hair and I’m sure there will be ups and downs with it but faced with the alternative of life before helper hair vs after, right now I’m thinking that (hopefully) it will be worth it-  

it is so hard to decide what to do about the hair loss, try every medication there is, go with alternative medicine, do nothing- let it run it’s course, get a wig, don’t get a wig, shave it all off, who can say, each person’s experience with FFA is so different. This time next year I might decide to get more ‘hair’ or say take it off and shave it off. 

Hi Minter, did you get your hair done in London? I've had mine done but feel I have more hair than I need. Think just the fringe and sides would be best. Going on Monday for an alignment and can't wait as the hair is moving a bit.

that said still the best decision I have made along with stopping all medication.

Hmmm! Very interesting- I went for a consult yesterday at a hair place near where I live. She was very against medicine there, and has a lot of oil/organic treatments instead. She said that as long as I’m on the steroids I can’t do both... she also has nothing in terms of hair pieces for me (I don’t need one yet but if I do...) 

I live in France and would make the trek to London if need be, though it would be crazy expensive. Hopefully I won’t get to that point. I called Lucinda Ellery and they don’t have a place in France. Today my cortisone hair mousse thing is broken - so I’m going without, at least today...

An interesting article listing 21 reasons for hair loss.  It does not specifically mention FFA, though it does mention autoimmune alopecia.  http://www.health.com/health/gallery/0,,20727114,00.html

Hi Minter,

I am so pleased that you are happy with your eyebrows and new Lucinda Ellery hair. I have been looking into Lucinda Ellery hair for some time now as I want to have a back-up plan in place should I need it. I have been worried that I would need a whole hair system placed on my head when actually I only need the edges done but it sounds like they will just do the edges. That way, it feels like you are only having extensions put in, rather than the horrible 'wig' word (not that there is anything wrong at all with a wig). How natural does it look? How is your hairline - are you confident enough to pull your hair back? Were the staff professional and kind? 

By the way, I too had horribly rough, pitted skin but it has calmed down significantly since I started on Lymecycline antibiotic and is barely noticeable now. And good for you treating yourself to facials and eye-lash tints. We all need a little TLC now and again, FFA or no FFA!

Claire Julia, I’m glad you are happy with your hair, hopefully it will feel better after the alignment- I just had my first wash today (I got it done in London also, it is such a great place, everyone was so nice and professional-I felt like I was in very good hands and nothing was done without my ‘ok’) had the side panels tweaked a bit and my bangs trimmed a little- I did feel it was a little full on the sides at first, but it calmed down on the second day and after being washed it feels and looks better- not that it looked bad I just wasn’t used to having so much hair! At first I was like, oh you can never have too much hair haha! But it was quite full and bulky at first until it’s calmed down, It is now day 3 and I can’t stop looking in mirrors, I’m really thrilled with it- yes it is more maintenance then having ‘natural’ hair I guess, it is for me anyway! 

Yummy Mummy, I think just having the sides and bangs done was the best move for me, I needed something as my sides were very very thin and I wasn’t ready to have the full system and this is just right for me right now- I can tuck my hair behind my ears, I have a medium bob so I can do a little ponytail! I did see ladies coming in with their hair pinned up and pulled back in clips and in pony tails so it all depends on your hairstyle/length  I think.

HBW, I am in the UK now, but I’m back to the USA soon so have to make the trek into NYC which will add to the maintenance costs for me, not happy about that- but It’s either this system or try toppers and other systems or wigs and I didn’t want to go down that route. It’s taken me almost a year to decide to do this because of the journey to and from the salon, the commitment to maintaining the system, the cost and all that’s involved- I’m glad I made the step towards this though.

Very pleased you are happy with your hair, that's fantastic news.

Claire Julia, good luck with your alignment tomorrow- I washed my system/ hair for the first time myself yesterday and had re-tape the sides down, what a nightmare! That is definitely a learning curve- I had to re-do it three times on one side until I didn’t have tape sticking out and it was aligned properly ugh. I was trying to put the tape on the piece itself and finally googled a way of doing it with putting the tape on my skin first by folding the side piece down and marking with an eyeliner pencil then putting the tape inside the marks, that was a bit easier for me. Do you have to tape any parts of your system? 

Hello all-all around my eyes and my eyebrows have been itching so much lately. It has been dry here and I thought it would get better now that it's raining again but it's not. It's driving me crazy! Does anyone else have this and thoughts on what helps? As I've mentioned before I seem to have alot of skin issues with this extremely frustrating disease 

Hi AnnieMay

I've also had that particular issue recently - I find that spraying Avène thermal water calms the skin - I would imagine any other thermal water would also work. It provokes a sensation of coldness in the skin and I think it can also work with anything that cools down the area and the brows

Whenever you feel that general region has calmed down a bit you can start applying Aloe Vera gel.

Hi AnnieMay,

I have 3 go to things for itchiness and redness. Cortisone 10 first, if that doesn’t help then Sarna anti itch lotion. Finally, I have a tube of Triamcinolone Acetonide that my dr prescribed for my random itches-like the unexplainable one in the palm of my left hand. I’m using just a small dab of it now on both sides of my eyes that have turned fiery red each morning when I wake up. A new thing. I also massage castor oil on my brows when they get dry and flakey. Hope you find something that helps you! It’s akways something isn’t it?!?

Thank you Isabel and illustr8r- I'm off to get the Avene thermal water, aloe vera gel and cortisone 10! I've been nervous about applying anything near my eyes?? Honestly lately my whole face gets red for no apparent reason and it feels like it's on fire. Yes, so many bizarre strange annoying issues. 

AnnieMay, I was wondering if you are using any thing with retinol in it on your face. A couple years ago, all of a sudden I became allergic to a creme I was applying to my face.  ROC I was itchy all around my eyes and brows & red.   It had nothing to do with FFA as I didn’t have that then.  Since then I have not used any cremes or anything with retinol in it & I have had no problems.  Just a thought for you. 

Just a quick question - are you finding that you are losing hair while taking your medicine as directed? First I feel a sore spot on my scalp a centimeter back or so, then, if I look at the spot, notice it's losing hair. Sometimes red spots, sometimes nothing. Then the cortisone mousse/minoxidil seems to make no difference. I know I'm in flare-up mode, but other than the regular life-nonsense am not particularly stressed. I just want it to stop here, right here, right now. Like we all do I imagine. Thank you for listening. HBW

I was wondering if anyone has seen credible info on any significant correlation as to severity of hairloss loss in ffa/lpp and the amount of scalp tenderness,itchiness, general discomfort. Or do some women experience just as much hairloss without any sensory scalp symptons to those who have a lot of discomfort??

Jules Australia, I have had very little discomfort with my FFA. No redness, pustules, etc. only some minor itching. Strange disease for sure 

@Jules I had pinpoint pains on my scalp all over my scalp but strangely not where I lost hair. I had one or two pimples but no nodules during the last big flare. My biggest symptom was that I was itchy everywhere. I don't know if that was because of the FFA or my B12 deficiency that was discovered at the same time I was diagnosed with FFA.

What do those of you who don’t have access to a Lucinda Ellery and who don’t wear headbands do to cover your scalp? I have had quite the flare-up in the past month or so, right (ironically) after visiting my specialist in Paris. I’ve especially lost hair on the top of my head. My family says that it’s not visible yet, but of course I notice it, and am trying to look up solutions just to reassure myself. I’m afraid wearing a headband can seem too obvious - like obviously hiding... but if it works for you I’d like to hear more too. Hope you all had a lovely Christmas : )

Merry Christmas everyone! 

Halfbakedwho, I wore really pretty scarves right before I started wearing my semi permanent hair piece. It was a relief to wear those instead of going through all of the fuss of hiding my scalp. ☺️

Hey CurlyK, did you get your hairpiece online? Thank you. : )

I got my hair piece at Custom Hair Tampa Bay here in Florida USA. It’s custom fit to my scalp and is bonded to my scalp for five weeks at a time. I go in like any other salon appointment where Megan removes the piece, cleans it and washes my scalp and remaining hair and then re-bonds it to my head. I sleep in in, shower in it, wash and style it like a real head of hair. The hair is real human hair and the color and curl is matched to my real hair. To find a place near you, try googling “semi permanent hair” or “bonded hair piece”.  I’ve been extremely happy with this option. 

I started wearing "pieces" four years ago.  At first I had enough hair in front for the piece to be clipped in front and back and it blended in with the sides and back of my real hair.  As time progressed the loss became bigger and eventually I needed to lose the clips in the front and sides and move to tape while the back still clips in.  I have several pieces now, one of which was actually a wig, custom made to fit my loss and still clips in the back with wings on the side to cover my side loss.  My wonderful hair loss expert/hairdresser who specializes in our issues has worked with me for the last 18 months. 

So here is the thing that is so ironic.  I have never looked better in my life (I am 70 years old!), as the hairpieces are full and dyed to match my original hair color (I will never go gray!).  Everyone thinks I look so wonderful, don't really realize it is my hair that does it, and I know I am a total fraud!  I don't want to bond as I am always so happy to remove the piece in the evening before bed.  I cannot imagine taping or gluing for five weeks at a time.  On the other hand, when I am home with my husband, I am pretty ugly and embrassed too and scared what if the doorbell rings, so I keep the piece on til bedtime.  

My pieces are human hair and I take very good care of them. I know I am fortunate to be able to afford them, as I am still working.  But the whole thing is unbelievable to me that this happened.  I am really trying to handle it well, and as time goes on, sometimes it becomes more natural to deal with this, but every once in a while I start freaking out and emotionally I am back to square one.  Simply put, no right or wrong answer, but it sucks. Also, just for interesting points, I never had pustules, or anything.  Just wierd itching and sudden loss which continues to progress.  Finally, every city should have at least one place where they specialize in hair replacement; if you google, or even ask your regular hairdresser, I am sure you will find someone.  I started with one place and moved on to another after a recommendation from the lady who did my permenant eyebrows (lost those too!).

Wow, Sad in Chicago,  that is quite a story, and I get the irony - I can relate a lot. I too am finding this whole thing kind of unreal, unbelievable surreal really (that’s a lot of real/unreal lol). But now that I have had the first flare-up since I’ve started paying attention to this (about last Apris), I see how fast the hair can go - and I don’t know what I’ll look like in six more months. I ask this question (yet again, b/c I think I dost repeat myself...!) b/c I went to see a hair specialist a couple of weeks ago who just told me there were NO OPTIONS that she could see for me (not enough hair loss for a wig, and I think she had no imagination to think of wig pieces!!). I’m going to turn 52 in February, and hope to work for another 15 to 20 years. Like just about everyone, appearance counts in my profession, though I don’t need to be beautiful - I need to be « normal looking ». My natural hair is a very curly, and medium brown with blond highlights. I don’t know if this exists in a wig piece but of course if need be I’d change color. So far very little grey, but God knows I wouldn’t mind being completely white  if I could have all my hair. Thank you both Curly K and Sad for your input. I am going to have to shop around in my area some more for someone a bit more helpful (I live in France - a good and bad thing, like everything ; ) ! )

OH YES I think I found something - custom hair extentsions in my town.I am so relieved. I will call after the holidays - just for the consult, just to know my options. The medicines I’m using are a jjoke - my scalp seems totally unimpressed by my efforts to slow this down - on the other hand, if I weren’t using medicine, where would I be with this? If I have the hair piece option - I may take the chance at stopping the chemical warfare. And I gave up the no-gluten no-dairy - I have really no idea if it was helping or not, and living here it was just so hard (well living anywhere I suppose). But dairy is not so great stomach-wise so I’m going to go back off it. 

http://www.markglenn.com/female-hair-loss-faq.htm

This looks amazing too... FYI

Glad you are able to find some resources.  Words of wisdom:  Ask them for references and find others who work with them to make sure they are satisfied with outcome, that the resource allows you to come back as many times as needed for "adjustment" or tweaking on fit and styling upon first receipt with payment.  As you move forward there will be additional charges, for coloring for example when it fades, just like real hair, of course.  Do they customize?, do they order out, or have everything in inventory, will they color at your discretion?  The answer to all of this is yes for the places I have worked with, but you should be sure too.

I too am off all meds.  I have been told unequivocally there are no cures, ways to lessen the loss, or anything you can do about this.  I started with rogaine, propecia, and some cortisone.  None worked and I would not take the med prescribed for malaria that some try.  Just live with it and take care of yourself and get some good pieces, or whatever, that make you feel good about yourself as best you can.  

And start the pieces now, even though you may not need them much at this point.  That way as the loss increases you are able to maintain your "look" without a noticeable change later as the pieces get larger.

@HBW I’m not advocating stopping your meds-I just wanted to let you know I’m not taking anything now. I have Clobetasol if I get a big pain or itch but otherwise-nothing. I’m using castor oil every night on my thinning areas and I’m seeing new “sprouts” coming in around hairs where there haven’t been any in a long time. My hair seems to have a wee bit more body too. I had to stop the AIP diet but I’m still cautious with the gluten and dairy. Got forbid there’s a breeze but my pixie cut is working for me. This stupid disease waxes and wanes-I’m in a good phase waiting for the tide to turn. All the best to you.

Yes I want to start the pieces now, although my family says they can’t see it, the top of my head is really showing quite a bit of scalp - all the more noticeable since the rest of my hair is thick and curly. No, I’m not stopping the meds yet, but like Sad Chicago I’m not interested in Plaquenil, and though Madame Dermatologist wants me to have a biopsy in March - I’m kinda not interested in that either (to what end exactly??? Sounds just yucky and painful).

The hair-pieces seem to not come in extra-curly : /, and there are those who say they damage your existing hair... though my God who the hell cares if it means looking okay?  

I really like the idea of a trip to London every few months for my hair (to put a positive spin on it all : ) ! ) We could organize a FFA London road trip LOL. 

As far as getting references - I know absolutely no one who has this condition like me, know no one who has any alopecia aside from my husband who, quite ironically, has complete and total alopecia since 2014. Not a hair on his body - nothing, nada - comme un bébé lapin tout nu I tell him. But he’s a guy, and he totally completely doesn’t give a sh-t. Good for him : ), but I really don’t want to join him there...!

Yes I had a biopsy, and was mis diagnosed at the time with female pattern baldness, by a very fancy, hair specialist dermatologist and so what, she was wrong!  Another derm diagnosed from just looking at me!  Pass on the biopsy.  It is painful and won't change anything.  And as far as references, I meant from the hair replacement salon you choose.....and then you will find new friends, who are going through the same thing as you!  

I'm also off meds except for the odd use of Clobetasol- not on my head but on my forearms/wrists when I get such intense itching that I am actually drawing blood from scratching :-( but for the most part tea tree oil helps there and on my scalp.  I am intrigued by your use of castor oil Illustrated8R, do you think it is combo of the oil and your diet that is giving you new little baby hairs?  My diet is awful right now between traveling and the holidays, this new year it will all change!  

I agree that if you are going to get "hair" it is better to do it before it has gotten really noticeable- that was my thinking when I went to Lucinda Ellery's. It  has been a little over two weeks since I got my "hair" and I LOVED it, I was in London for one more week after getting it done and constantly looking in the mirror- pinning it back, trying different styles. But, now here I am back in the USA, in the "real world" well my normal world haha, I am not so happy with it anymore.  I get overheated and it starts to itch and is super uncomfortable and I am having a lot of trouble taping the sides.  So I have come to the conclusion that it is time to cut my losses and time for it to come off. I know it is only a couple of weeks, but when you know something, you just know it is time!

Don't get me wrong, I think it is an awesome system and I have looked in the mirror every which way and asked trusted people to see if they can notice any attachments and nothing can be seen and have taken about a million photos of the top of my head (wear the bangs are attached) and it looks very natural.  Everyone (that doesn't know about the system and those that do) says that I look great, my vacation abroad must've agreed with me haha!  

But it is just not for me, which I should have known as I hate even wearing a hat or a scarf or having anything on my head for more then a few minutes, but I really wanted this to work for me, so I tried it.  Luckily, I think, it was good that I went with this smaller system and didn't put all my eggs in one basket and pin my hopes on the larger system as it would have been more then double the cost.

I wish I could make it work for me, but it has gotten to the point where I just feel it all the time and dread washing my hair because that means I have to replace the tape. It doesn't help that I am recovering from shoulder surgery either and having to reach up and do the tape on the sides is sooooo painful!!  

The system and the tape works for so many ladies, I guess I am just one of those that it is not meant for.  So it will soon be back to my regular hair.  I have been thinking that when it gets to the point, I will go short with a pixie sort of cut then if I have to, I will shave my head and wear a wig if I want or don't want, something that I am can  take off and on when I want to. It sounds weird, but not being able to take this system off makes me feel trapped and claustrophobic! 

Again, don't want to turn anyone off of LE at all, they do awesome work and you are made aware of every single step that they are doing, and you walk out of there looking fabulous but it is just not for me :-( 

Minter, I understand how you would feel claustrophobic. When I first got my hair I sobbed most of that night and the next day. Having hair was as traumatic as not having it. It felt heavy and thick and “too much”. I had my regular hair stylist cut it some more until it looked more like me. Then, over time, I have gotten so used to it a lot of days I don’t even think about it. I live in Florida which is above 70 degrees most of the year. My head does get hot on those hot summer days but since I am “dry” and not “oily” I’ve not had any trouble coming “unglued”. 

With all of the holiday eating I’ve noticed I’ve been more itchy all over. Time to get off the dairy and sugar again. I know that is what exacerbates my itching. 

Each of us goes through trials and errors until we find what works best for us and helps us feel our best. I’m proud of you Minter for trying a new system. It may not be right for you right now but maybe in the future. Until then, know you are beautiful just as you are!

Hello ladies, I haven't written in a while yet I continue to read all of the posts. But today I feel a great need to vent to the only group of gals who will get it! In October I turned 50 and I did my best to celebrate, but knowing how much I've aged in the past 5 years made it tough. I have always looked 10 years younger, but now I look at least my age if not older thanks to !@#$$%FFA.

In the past 6 weeks, I had surgery, started a new full time job (had been working part time while caring for our 3 young children), my husband lost his job and my only sister got engaged. I am a mess of stress! And yes, I have noticed more shedding, which just makes the stress worse!

Last night I went with my sister for her bridal gown fitting. I am beyond thrilled for her, as she finally met Mr. Right and is getting married for the first time at the age of 41. She looked absolutely gorgeous, her thick curls cascading under the veil. I simply couldn't look at my reflection in the mirror. Over the years we have often been asked if we are twins, which of course always brightened my day, but in recent years that hasn't happened. She is not having a bridal party, just me as her matron (how I hate that term!) of honor.

I am dreading the next few months and her wedding day of April 7th and hating myself for it. I don't want to go dress shopping and I am dreading the pictures! I do plan to ask my sister to keep me out of any outside professional pictures (that dreaded wind). But there will be so many candids plastered over Facebook (I have several cousins who love posting pics all day long)  I don't have enough loss to warrant any hair pieces just yet.

The stress of helping her plan her wedding, the bridal shower, amidst our financial uncertainty and trying to learn my new job is more than I think I can bear. And knowing that stress leads to more hair loss...well I'm sure you can all relate to that!

My sweet sister and I have so many pictures of us together over the years, but now I hate posing for pictures, especially next to her. I guess because we do look alike, yet she is younger and prettier. We both are known for our thick curly hair.  I have lost my thick dark eyebrows completely and over an inch of my hairline. The wayward curls are hard to manage some days now that I maintain a fringe. I hate that I have lost my confidence in my appearance. I feel like I am back to that awkward age of 12 when I think everyone is staring at me. I try to focus on my inner beauty, blah blah blah, but this @#$%FFA just sucks!

Thank you for listening and I am grateful to have this forum where I can come and be understood.

Hugs to you Anne Marie, and thank you to Minter for sharing your experience with Lucinda Ellery.

if it were me in your shoes AM, and I was afraid of wind and candid shots, I would get extensions. I don't show much yet either but like a few people said further down I prefer not to wait. Just the idea that I will be able to hide this reassures me, and I see already how little meds seem to help, never mind the eventual side effects of taking even stronger meds. I take comfort in aesthetic dissimulation ; )

minter there's a place called Mark Glenn in London that offers something very different from LE

I may go check it out, no cap! No confinement!!

Anne Louise, I feel everything that you are saying- and it is awful you are going through so much stress right now.  When life is like this the last thing you need to deal with is your hair.

I went back and forth for a long time trying to decide if my hair loss was "enough" to justify getting "hair"- I am pretty much the same as you, have lost about an inch of hairline and sides and thinning on top along with almost non existent brows. 

Since the FFA started I have become an expert at sidling out of the range of a camera indoors or outdoors, but especially outdoors- if I go to a school game or something I make sure to sit on the top bleachers so no one can see the top of my head, always have sun or regular glasses on my head to hold down the sides of my hair, so many things to be be aware of, its not easy being us FFA-ers! 

One thing that has made me feel a million times better is getting my brows micro bladed, it is like I have a face again- maybe it is something to look into to get done in time for the wedding so there is time for them to heal?  

As HBW suggested, extensions might work for your another thing to consider is a topper for the photos and all that pre-wedding "stuff"!  A real or synthetic hair one can be found online or at a local wig salon for a pretty reasonable price and cut to your hair style and colored by your hairdresser and you can put it on and take it off whenever you want.  I got a good "real" hair one that is an almost match to my own colored hair on sale from Uniwigs, I haven't used it yet, but it is still there on my dresser waiting for me!  An excellent site for info on toppers is Corner of Hope and Mane, she has a Huge amount of advice and tips on how to wear them.  

Whatever you decide to do for you sister's wedding I am sure you will look beautiful and we are always here for you to vent or whatever :-) 

Halfbakedwho, I have read about Mark Glenn and I do like what he does, I think, am not for certain that he is actually Lucinda Ellery's ex and went off on his own.  I am not in London enough to go there though, if they had a place in NYC also it would be something I would consider!   

CurlyK, I'm glad to hear you were so sad at first too, I know that sounds awful doesn't it! But what I mean is I thought there was something wrong with me for being upset for having too much hair! It is a bizarre feeling to go from not so much hair to thick hair again.  

That is great that you have gotten used to your system, especially being in Florida- your hair looks fantastic in your photo also!  I think you are right that it is trial and error to find what works best for each of us- I just wish it didn't cost so much money for the trial and error part!

I am in the Northeast and it is bitter cold right now, but if I just get a little overheated here I literally want to rip the system off my head that is how much it bothers me when it gets to that point, even after washing my hair I have to use the blow dryer to dry the "system part" right away as it irritates me so much- so I don't even want to think what it would be like for me being all sweaty and hot in the  summer :-(  

Oh and the itchy skin, CurlyK, it is very much worse for me in the winter. I think the dry air doesn't help and wearing long sleeves ( I am always pushing them up when they start to bother me) , but it is only on my wrists/forearms- it is the weirdest thing and has been going on for several years now. I guess I should maybe consider giving up sugar and dairy- I could maybe think about limiting my sugar, but I love dairy! Yogurt, milk, cheese, ice cream, that would be a real tough thing to give up. I actually will be limiting sugar after the new year, time to get back on track with eating, so ice cream & most cheeses will be gone from my diet anyway ;-/ 

@Minter I think that lessening gluten/diary has made me feel better. I lost a bit of weight, don't feel bloated and uncomfortable after eating etc...and definitely less itchy. Maybe it has affected my hair because of less gut irritations which from reading says is a trigger for inflammation. (?!?!)

I have been using Castor Oil for over a month now. I had an outline of flaking skin at my hairline and about 2 inches back. Never have had that before. My scalp felt tight too-so I started using the Castor Oil I had bought as a miracle cure for my missing eyebrows some time ago-as a lark-to see if it would help my scalp. My dr. told me to only use Clobetasol if I absolutely had to now. Anyway, after about a week the flakes/peeling eased up and now it's gone. A week ago I noticed my hair had some body to it and laid better. This week I see the little sprouts popping up in my widows peak and along the sides in places too. My dr. saw no indication of new hair growth when I saw her November-which I took to mean when that hair came out nothing was going to replace it. What's coming in now is gray- which is absolutely fine with me as long as it keeps coming!

@AnneLouise I totally agree with Minter- get your eyebrows micro bladed. Go online and do research and find a good technician (with plenty of good reviews and client pics of their work). It will make you feel so much better-one less thing to do when you get ready. Mine have faded a bit but they are a good base for the powder and pencil. Also- get Latisse from your eye doctor or derm. My once thick eyelashes are affected by this crap too and started to fall out-leaving gaps along the lash line. I've been using Latisse and they have filled back in nicely. I brush the excess over my brows and I have a few more hairs growing there too which help with the illusion.

So much time,effort and money to make ourselves look and feel normal. It's exhausting!!! Stupid friggin disease!!!! 

I am so sorry I messed up your name, Anne Louise. I was in the car and fiddling with my phone, please excuse me. The sentiment remains the same - do what makes you feel best. My hair on the top of my head is eroding like the ice caps - gradually but continuously, every damn day. The hardest part for me is feeling powerless. So, just the idea (like Minter said) of hair « waiting » for me someplace (in some salon, somewhere) makes me feel better - like I can do *something*.

I definetly have days when I feel terrible ; my younger sister lives in Vegas and her job requires always looking amazing, which she does. I really believe in spending a bit to improve my confidence - I can do without new clothes, for example, and spend the money on my hair or face which for me is more important, and what I will see in the mirror more than my shoes. 

I too have been eating waaaayyy too much sugar, and dairy, and am totally itchy. Hard to know what’s what - dry air, food orgies, family get-together stress : (. 

Yes Mark Glenn is London and it seems that his « system » doesn’t exist anywhere else at all! Go figure. For now am considering going there for the hair extensions which are just for every three months. From here it’s doable. But am going to find out about what’s in my town first. Why wouldn’t a wonderful cap-free system ONLY exist in London??? 

I too worry about looking too obviously pouf-y on top - I have seen women after chemo with that « topper » look. But if I’m going to change I’d like to do it over a break when people tend to come back to work with different hair anyway ; ). 

Hi Ladies

I don't write on here much but I do read the posts. I've belonged to this group for about 5 years now. I have a Lucinda Ellery System which I have done in London. I also have my eyebrows tattooed. I'm happy to show pictures to anyone who is interested in the system. Just message me and let me know xx

Haha HalfbakedWho, food orgies! Yes, that is what's been going on here for me too, huge great food orgies!! :-D  

I've gotten to the point where I will spend $$$ to make myself feel better, like getting my brows done, getting lashes tinted, Lucinda Ellery (even though it didn't work for me) and facials, it does make a difference for sure.  It is not money that is easily spent for me, but I have decided that this is the only life I have and I can either go through it miserable about this stupid hair or make some budget changes to spend more money on ME and be a little happier about myself! 

It is frustrating that all the good hair places seem to be where you aren't!  I wish we could just head down to the local hairdresser and they would wave a magic wand and make our hair look fab, sigh. But traveling every 3 months is better then every 6 weeks or so I think.  

Illustrated8R, that is fantastic how the castor oil is helping you!  Amazing how something as simple as that will give results, however small, when all this powerful drugs are doing much of nothing at all it seems.  I am going to my doctor in march and will ask about Latisse for my lashes, & also to use on my brows, they are looking so great, even with my sparse brow hair- but like you said a little powder and pencil and they are good to go, nothing like the artistic work I had to do pre-microblading! 

Thanks everyone for listening to my rant. I got my period the next day, which helped explain my mood! I have tattooed my eyebrows and was thrilled the first year or two, but I've had 2 touch ups this year alone and they simply don't look as good as they once did...sort of faded, not the crisp "hairs" I once had.  Plus the week of healing has me self conscious.  I work with elementary aged children, who often have no filter! "Your eyebrows are red" (while healing) "Why do you draw on your eyebrows with a marker?"  Make me wonder what adults are thinking but not saying!! Every adult I know say they look fabulous, and often are surprised when I mention they are not real.

I've been considering eyebrow wigs. Has anyone had any success with them? I've watched a few You Tube videos and I'm intrigued. They seem more cost effective too.  I'm paying $200 every 5-6 months, and it's a full day off work, which is difficult to do, especially now that I'm in a permanent position.

Also, I have had great success with Lash Boost. by Rodan and Fields. My lashes are thick and gorgeous! I had used Latisse for a while but my eyelids would get red and I found the countless brushes annoying. Lash Boost is much easier to apply and gave me better results.

Yesterday I went for a second hair consultation. The first one was a couple of weeks ago, and the lady said she coudn’t do anything for me, and that my medicines were « bad » and that her natural oils would « get the bad out » rather than keeping them in (cortisone). Not helpful. 

Yesterday’s consult - helpful - and I found out I’m lucky and not-so-lucky. Lucky b/c my hair is so thick and curly it covers up the missing areas. Not-so-lucky b/c my hair is so thick and curly she’s going to have to see if she can special-order hair extensions for me, b/c few people apparently carry European curly hair. 

On the other hand I think I can wait and see another six months. She says it’s really not noticeable (on the top of my head), and it’s freaking expensive (abour 360 euros, go back every three months). 

I’m just relieved to have found someone who’s taking me seriously and is giving me a future solution.

illustrated8r, I've googled castor oil- because even though I've known about it all my life, I've never used it for anything- apparently it is a magic oil that can be used for all sorts of things!  I think I will get myself a bottle as even if it doesn't work to make my hair grow, it can be used as a conditioner, a moisturizer, or for arthritis/joint pain so it will be good to have it in the house irregardless :-)

Anne Louise, nothing wrong with being in a crummy mood because of FFA, period or no!  

The healing time after getting brows done is the worse, I pretty much told everyone that I came across that I got my brows done- I didn't do my make up in the dark (my brows were almost black while healing)!  I've read about brow "wigs", but don't think they would work very well for me- but it will be interesting how they do look/last.  

I will look into Lash Boost, thanks for mentioning it- I have sensitive eyes also yay so reading that Latisse made your eyes red, I don't need that happening!

Halfbakedwho, glad to hear you have found someone that might be able to help, I'm hoping for the best for you!

@Minter I’ll look forward to hearing your castor oil success! Think positive! I got my hair cut today and my stylist said my hair thickness and body is much improved from when I saw her 7 weeks ago. She didn’t have to cut down the “good” hair so much as to blend it with the bad hair in front. She’d do that so my head wouldn’t look like a football. The sides have some weight to them and aren’t so flyaway and same goes with my bangs. Knock wood of course-I don’t want to jinx myself! The gairloss areas are still the same but the thinning areas look better. I use castor oil every night. Keep us posted! :)

illustr8r, monday is my grocery shopping day- so it is on my list to be gotten.  I'm hoping it will also help with my bouts of horrible, intense itching on my wrists/forearms too (I use tea tree oil and clobetasol when it gets bad, but if I can avoid it getting bad in the first place that would be a godsend for me)! and will give it a go on my poor arthritic joints and tendons-  If nothing else, I will have nice soft skin and hair from using it and if I have tummy trouble, it is there to make me better!  

I am getting my hair system removed this week, so I will start using the castor oil on my scalp/hair after that.  It is great news that your hairdresser has noticed a difference- though I don't want to jinx you either, knock on wood! ;-) 

Just a question on how to use it on your hair- Do you massage the oil all over your entire scalp? Do you have to wash it out every morning so it doesn't look oily and heavy? I am really happy for you that you have found something that is helping you and especially something that is so simple and not a prescription med with all sorts of nasty side effects! 

@Minter I put castor oil on at night. I bought an organic brand online from Amazon. I put a drop of oil each on my left fingertips then transfer some to my right (it’s pretty thick) then just lightly massage it from the top/sides of my hairline and further back. If I have a pinpoint itch I will drop a small amount on it and massage it around. I put a towel on my pillowcase too. I wake up looking god awful! LOL and it washes out just fine in the shower. 

Right now I’m not on any meds except Latisse for my eyelashes. I’m aware of my gluten/dairy/sugar intake but I still eat them occasionally. Things have calmed down for whatever reason-just thankful for it and crossing my fingers (and toes).

I'm going to check out my local health food store and get some organic castor oil from there I think- thanks for the info on how you use it, a bit of trial and error is involved with the amounts I suppose for each person and my hair always looks god awful in the morning anyway, so having a bit of oil on it as well isn't going to make much of a difference haha :-D  Thanks again for sharing, much appreciated!

Another thing my dermatologist mentioned is something called Thuya essential oil. I too have started using a bit of Castor oil based on your experience - but if I have too many things, I'm going to forget them (forgot this New Year's morning to put on the cortisone!). Oh BTW HAPPY NEW YEAR to all, with burn-out of FFA, with health, with hope, but especially with knowing what's important and essential and being okay in the face of whatever comes. Maybe it sounds corny, but I want to be a role model for myself in how I deal with this, and other things that come at me in my life. The art of living is all there is. Take good care.