Bloomingdale kid - your comments about getting used to it (like braces) and getting the Brazilian hair straightening made me so crazy-happy! I will explain- 

I am an orthondontist’s daughter - I was also a braces guinea pig for years. So somehow that just clicked for me. My inner braces-kid was very comforted. 

And - I really loved my hair when I got it smoothed down with the Brazilian straightening - which I don’t do anymore as per my dermatologist’s advice to try to keep my hair on my head. When this is no longer an issue - when it’s « hopeless » (ha!) then I can at least get what’s left looking smooth and nice! 

Then of course... I am worried for the reasons CurlyK brought up... I too tend to be an itchy person. Could you be developping an allergy to the glue or to the latex? Maybe a switch is in order. 

Bloomingdalekid you look so beautiful!  Thank you for sharing and oh yes, as a braces kid too the comparison to getting them tightened is right on! Funny how that feeling from decades ago can come right back haha :-D

Just to join the choir of praise to your new fab look, Bloomingdalekid. Your hair looks stunning and you eyes looks bright, happy and a little proud (yeaaah! If that’s right, you should be!!). 

Thanks for putting yourself out here and post a picture. It’s indeed encouraging to see how natural and good it looks. Just wow.

I also agree with your statement about us being the guineapigs in the doctors(who-don’t-seem-to-have-a-clue) hands. And I like your little warning about the meds - reminding us to give it some extra thoughts before popping those pills. I don’t thing any of us take the risk lightly. It’s really a matter of pros and cons...and not knowing. Not an easy decision at all. But thanks again to show us how good we can look with this awful disease. 

Ive just written to my normal Doctor (not the dermatologist) and asked him if it’s possible for me to try LDN (Low Dose Naltrexone). Have any of you tried that? Supposedly it should be good for some auto-immune diseases (I have no idea if it will work for FFA. On this board I can see some people with other forms of Alopecia have some success with it).  I would like to try to see if it can improve this but also other health struggles I’m unfortunately dealing with these years. But yeah, I don’t know if my doctor will be willing to let me try. But if so I’ll of course let you know whether it improves something for me in regard to FFA.

I’m also debating with my self if I should try Finasteride. Have asked the dermatologist for a new appointment to discuss it and other options.

But seeing your picture, Bloomingdalekid, really makes me question again if the risk is worth it. No matter what, then it’s cool to know there’s a safe option to regain your hairline again = helper hair. :) 

As I live in the semi-dark North the heat is not something I worry about in regards to a topper (though this current summer was crazy and unusual hot). But I do worry about if a topper (like the one you have) can withstand a sauna (I do the whole winter bathing thing..swimming in the ice cold ocean and end it with sauna-sessions.bliss!). Does anyone know if it’s “safe” to do that with a topper? 

Also, the talk about the need to straighten your hair. What’s up with that? Is it difficult to find a hairpiece with curls? I love having curls so would hate to lose that as well. I know CurlyK has a gorgeous curly hairpiece (thanks for showing us) - but is it hard to come around? 

Hi Miss Mymble -

I don't know if the curls are terribly hard in and of themselves to get in a topper but I think it depends a lot on what sort of curl you have. My curls are intense and spirally in some places, loosey-goosey in others - it's not going to be an easy match with the rest. I would just as soon eliminate the whole dilemma and get me some nice smooth waves (ahh sounds so nice) - and wake up like B.Kid with just a swishy comb-thru. Oh yes, yes ; )

Hi Miss Mymble.....  the consultant had samples of curl that were available to match your natural hair.  I always straightened my curly hair with a heating iron, which in itself was damaging, so when we chose the curliness of my unit we selected “wavy” so that it had body.  Since the unit integrates with my own hair on the sides and back, I chose to have a Brazilian Blowout in order to keep the frizz away.... my hair is actually more frizzy than curly.  The “hair” that she ordered was perfect!  I can curl it, straighten it and actually, in the morning when I jump out of bed, I brush it and need to do little more with it to be presentable.  It’s pretty amazing......

 Soooo... I lasted less than a week on the Finasteride. I felt foggy. My hair was shedding all over me (yes this is a side effect). The kicker though - the tinnitus. Like a low hum, a foghorn or a refrigerator motor, in my left ear. We’ll see if it gets better. 

I admit I don’t know if some of the side effects are because I read the side effects - though I didn’t read them until last night because of the motor sound in my ear. And there it  was, along with the hair shedding (I had hair all over me this week) which I hadn’t thought related to the Finasteride (though I did wonder why I was losing more hair whilst taking the cure for hair loss... n’est-ce-pas...)... but I am a depression sufferer though I am an optimistic pessimist and yes - another side effect - depression. Mood swings. Weight gain (which depresses me). Basta says I. Ça suffit. It just scares me too much. 

I eat more or less healthfully. I try to exercise as much as I can (though in winter it’s not as much, alas). I won’t go crazy with a caveman or cavewoman diet, and in France we eat bread. So back at square one, or le premier case. I would rather lose my hair than my hard-fought mental health. Besides, if I get a nice hair piece I will be in a good mood : )

@HBW I’m sorry to hear you had such negative side effects to Finasteride! I’ve read many comments on the usual hair blogs and the comments about side effects range from none to some-mostly weight gain. The shedding would have freaked me out too. What works for some and not others-so frustrating!

My family dr won’t prescribe it without consulting a dermatologist-and I am in between one right now because of insurance. I’m using oil with saw palmetto in it a few times a week in addition to Castor oil. However, she told me I might not be able to take the herb or Finasteride because of interacting with BP meds...again, so frustrating.

Sorry to hear, that the finesteride effected you like that, one step forward, two steps back..so frustrating, when I discussed side effects with my dermatologist, she said she had never heard of the hair shedding..didn't inspire confidence as I had also read it in the literature and on this site.  So now maybe we hang out in hope for the topical product to come on the market.  Yesterday was a really bad hair day for me, it was 32 degrees and this horrible hot wind..so whilst you in the northern hemisphere are cooling down, we continue to get hotter   On the upside Christmas is just around the corner which means some lovely catch ups with family and friends.  Take care all

Interesting - I am not sorry at all - I'm relieved. Especially given I am on antidepressant medicine permanently, probably until my dying days, and no doctor thought to consider interactions between the two medicines. I'm also not surprised because whatever side effects are on a label always seem to have my name in parenthesis on the side (as in, "Half-Baked-Who this is for YOU) not that I'm paranoid or anything but really. Really. 

Wow Halfbaked who, those are some awful side effects!  In a way it is good they started so quickly so you knew to stop taking it right away.  

I agree completely with you, better to be happy and healthy in body and brain!  Hair is hair and can always be replaced, mental health well- that is sometimes not so easily repaired. 

Just wanted to share that I’ve had some success with my new oil, Eterna-Grow for Men by Prairie Rain Botanicals. I have seen and have had it confirmed by my hairstylist many new hairs coming in my widows peak and my thinning temple area. What’s scarred is scarred of course but every few new hairs helps my pixie look intentional. I now use Castor Oil twice a week and this new oil the other days.

Merry Christmas everyone! 

Fantastic news illustr8r, doesn't look like we can purchase in Australia, will endeavour to see if I can get it posted, thanks for sharing, hope you have a fantastic Christmas, and a healthy 2019

I am coming to the States in February (Florida for those interested in rubbing scalps!) and will definetly get myself some of this.

On the FB page - very active - someone posted a study re: Accutane for FFA. Are you all on that page too? I occasionally post there but I am wary about the privacy problems. However if any of *YOU* would like to connect with me on FB PM me and I will give you my « handle » (which is again not a real name). 

I am still watching my hair fade into my scalp-sunset (though it’s not a fade). I still don’t want to take the Finasteride. 

In other words, all the same, all changing... comme d’habitude. 

Très bonnes fêtes !!! Bisous. 

Merry Christmas everyone.  

I’m not on Facebook site so if any relevant ‘hair stabilising loss’ miracles please let me know! I value your comments

& virtual companionship.  Thank you so much. 

Wishing you you lots of festive fun x 

Merry Christmas FFA sisters! Just want you to know I think of you often and hope you have a peaceful holiday.  

If any of you live in the Netherlands, please message me. Thx!

Hello Lu - I can view your question in my email I get when someone from FFA group comments on a discussion or posts on the comment wall, but I do not see your questions/post in this group!   

Anyway, I know the feeling of anxiety you are experiencing with the “news” of having this unattractive condition.   Finding this group has not changed the diagnosis but it has calmed my nerves.   It is comforting to know you are not the only one.   

I have been on hydroxychloroquine for about 7-8 months and it appears to be slowing the hair loss and drying up the red bumps.   

Last April I started a discussion called “New to FFA”.   I had so many  responses to help me understand.  Look for that and other posts and read what these strong and lovely women write about FFA.   

Hate hate hate this disorder. It's hot humid in southern hemispher Australia, & often seems to have an impact on the scalp sensitivity/discomfort/itchiness.. not to mention the sweating, espec across hairline on forehead ....these weather conditions certainly do not enhance the already degraded look of the hair & more especially, the eerie odd feeling.  Hate hate hate it !!!!!!!

Oh Jules i totally empathise it’s so much worse in certain temperatures.  That’s what scares me about how I will manage with ‘new’ hair which I will probably need this year.   It is a crazy condition and situation to be in :-((((( I only feel ‘normal’ when I’m wearing a hat.  I don’t believe since my official diagnosis the progression has stabilised for a minute..... will it just keep going until none left?  

Afraid, You take the words straight from my own thoughts & feelings, where you said in your intro home page " I used to be an incredibly happy person until this disease".....  Exactly my sentiments .... living with the ghastly symptons & slow continual (seemingly never-ending progression of loss, & discomfort), with occasional reprieve in between, month after month, year after year, .... what can I say, but it truly can wear your spirits "down" into a spiral of despair, at times. I try sooo hard to stay happy; I am grateful for what I have, a loving husband & 2 wonderful adult children, friends & family; nevertheless, day in day out, this chronic disorder, much of the time is so 'unsettling' to live with ! It just takes the natural joy out of everday living :(  

Is there anyone in this group who lives in the Netherlands or Amsterdam in particular?

Hello all and best wishes for a wonderful New Year 2019. 

I am going through too much Clobestal - I think I put too much on - but my scalp, on the top of my head, feels strange and I have gotten some very huge swollen and somewhat painful bumps. This is new - the bumps I mean. Now I think I may have LLP and not just FFA (but who knows, it seems everywhere the jury's out...)

I also have dreams where my hair is falling out, faster and faster. So the goal of those dreams seems to be I wake up relieved (lol) because I actually do still have hair!

I can't relate though to wanting to end my life over this. No, no no - after all I've been through with deep, asphyxiating depression and dark-pit anxiety - I will not let my stupid hair ruin my life. I wasn't a particularly happy person before this happened, but I was happy enough. I am still happy enough, and given where I've been I'm grateful for that. 

To me, this is also a feminist issue. If we were men, could we imagine feeling suicidal over hair? My husband is entirely bald like an egg - he has no eyelashes, eyebrows, NOTHING - and he looks like an alien embryo. Or something. But what a lust for life. 

Of course, I'm scared and miserable that the powers that be have deemed I must end my life bald or partially bald, spending money I'd rather use to go to Greece on hair pieces. No, it's not fair. I also wish I'd been better at math and taller. 

I hope I don't sound critical because that's not my intention at all. I try to find role models in women that seem to have what I would like to have in the next portion of my life... Ok Ruth Bader Ginsburg has hair, but I think if she didn't, it wouldn't slow her down... it seems to be passion and purpose that keep one happy and not hair (from my observations ; ) ! ). Of course, I am stating the obvious, but mostly for myself on this procrastination-y Sunday Morning. 

Gros bisous, my hair-challenged sisters, have a comforting day. 

Love your posts Halfbakedwho,  I want you to know it really helps me that you share about your depression as I too suffer from days when it seems like I can't claw out of the black hole.  Having this stupid hair does not help on days like that. 

I have given up on Clobetasol and use a CBD salve (made from hemp not marijuana) for my itchy/irritated spots, luckily I don't really have it on my scalp, only sometimes on my hairline, but definitely have intense/crazy itching on my forearms/hands that drives me mad when it happens and one day I tried the salve on it instead of Clobetasol (which relieved the itching but also dried out my skin sooooo not so great) it works very well and keeps it somewhat moisturized too with it being an salve.  I originally got it to help with my achy hands as I am a crafter and some days my poor hands feel like they will fall off.  It is amazing the difference it has made!   

Having one of those days. For whatever reason my eyebrows and forehead feel really tight and tingly. No explanation as to why-I’ve not changed anything. My hair in the front the past few days has been exceedingly dry, like straw, until I put my hair gel/conditioner in it. I’m still getting baby hairs growing in but I’ve been seeing more hairs in the sink than usual. Guess I’m inching toward a flare or something?!? I hate this stupid disease!!!

For everyone in Victoria, Australia ( or even interstate), I have just had an appointment at Sinclair Dermatology & it was so encouraging! They’re starting me on a combination of  dutasteride/Spironolactone/ minoxidil & will consider hair transplant after 6 months of treatment  ... glimmer of hope!!

Oh illustr8r. .I'm feeling the same things right now and it's awful. My forehead feels sooo tight, my eyebrows itch and my scalp is tingly. My hair is dry and straw like, but then really fine and "fluffy" on the ends? and now that I have a lot of overall thinning my part is growing.

Jules. . I have that strange scalp sensation too and it's terrible. It's a struggle everyday to try and forget about this awful disease. It's so much more than losing some hair and I hate it.

Minter. .I think I might try a CBD salve. I have to try something.

AnneMay - definitely use CBD. It has been very helpful for me.

Dianna- do you use oil or a salve? do you have a specific one I should try?

Lu,

I'm in NSW and am on the exact same medications, having just come off Plaquenil and swapped finasteride for dutasteride. It must be the Australian way!

Have noticed more hair dropping since Plaquenil, however, so not sure about this yet.

This is the brand I am using,  Ananda Spectrum Salve 125 for $23.99.  I got it about 6 weeks ago and still have a bit under half left in the tin as a little goes a long way!  I used it on my hands the first day and very soon I noticed a difference in the pain level- yes, it is still there, but in no way as intense and much more bearable.  

The difference in my itchy skin on my forearms is really noticeable, I would literally scratch and scratch drawing blood at times as it was that bad and now, as soon as I feel the itchy/tingly feeling I apply the salve and poof, no more itchiness. Though the word 'itchy' makes it sound so mild, it is a deep down feeling of something almost gnawing at my skin from the inside, an awful feeling that I never really could get relief from and the more I scratched the worse it gets, why this is- have no idea, but I'm guessing it has something to do with this stupid FFA. 

Anyway, I will get the oil as well to use topically one of these days- mainly at night.  I really like the salve as it is not "messy"  and I can use it throughout the day as needed when out and about or whatever- but the oil I could use at home and overnight and it will help moisturize too.  

Hi Lu, glad you have had success with Sinclair dermatology, obviously they are on the fore front of treatment, for FFA, i did not realize it was possible to have a scalp transplant.  When is went to a melb dermatology clinic, i felt that they glossed over the condition and although willing to give me a cocktail of drugs, did not give me any info regarding them.  Hope you don't mind asking did it take long to get an appointment, and did you think they were thorough?  Good luck with your treatment plan, always good to hear some positive news.

Hi everyone,

Thank you Minter for loving my posts ; ), helpful in my continuous need for narcissistic re-affirmation! Kid you not. 

When I go back to the States I'll be looking into the products you all mention. There doesn't seem to be any CBD oil available here - surprising considering how much wine is on the shelves in my corner market, but apparently, these two things don't cognitively fit together here. 

My "new thing" symptom-wise seems to be swollen red bumps on the top of my head, a bit like a pimple, but not. If I push on them they hurt. It's not that troublesome, just another weird thing. I still put the Clobetasol on and it feels like it calms things down a bit, but I'm curious about other options. I should also be taking a mild antibiotic every day but I forget to do it - and when I do it makes me nauseous.  

If people are actually taking Finasteride - does it seem to help you? Have you noticed side effects? Do the injections help, and how often do you get them - these weren't even offered to me as an option! Not that I'm pining for injections, but local injections seem less malicious than the Finasteride which - who the hell knows what it's doing to your organs... yes I'm paranoid too... and I'm sure Finasteride won't help me with that...

Bon dimanche everyone, I love Sundays. 

Hi Plf,

I thought the doc at Sinclair Dermatology was excellent. She was thorough, empathetic & explained the diagnosis & treatment &, without me asking, said a transplant is possible but they wait for a minimum 6 months of treatment before considering it (so much better than the doc I saw in Camberwell 18 months ago who gave me an incorrect diagnosis, prescribed rogaine & told me to wear a wig). I told her I was trying to follow an autoimmune diet - she said there’s no research to support its helping but to not apply SPF face creams near my hairline. 

I only had to wait 3 weeks for an appointment (better than 3 months to get into the Sydney Skin Hospital) which was fabulous as I just wanted to start any treatment ASAP. 

You’re so right about Sinclair being at the fore front .. Prof does so much research into alopecia that if anyone’s going to know the latest theories about this horrible condition it’ll be him & his staff. 

I’ve only had 1 appointment but I’d highly recommend them. 

Halfbakedwho, good luck with your CBD search when you arrive back here - I only picked this brand as it is sold in my local pharmacy, so it was easier for me to do that then actually having to make a decision and choose one of the hundreds of brands of  different CBD's available online!  I'm surprised CBD isn't available over there even on Amazon as this is made from hemp not marijuana.  & yes, your post's are the best! :-D

A half day of hot flaming red ears! Most times it’s just one ear but today it’s both. I looked up red ears and it’s a syndrome and can be caused by many things...most of it rare and autoimmune related except if you get it from a sunburn. Great.

https://www.medicalnewstoday.com/articles/320344.php

I know I'm feeling a bit more touchy about my appearance because I'm leaving for the States soon. I have been shedding a lot of hair recently, and who knows why? But I noticed that there's overall thinning on the top of my head. And my eyebrows are starting to get thinner at the outside. 

So I would like to know - when in Florida, given we are now supposed to avoid sunscreen, what to do? Obviously a hat, but if you have other ideas, please share. 

CurlyK - you had mentioned once that you were itchy and your scalp felt irritated - was this resolved? I know you live in Florida, and I hope I feel okay there. I have the impression that the heat isn't helpful.

However in other news, I got my highlights done, and the girl reassured me that my fluffy hair still is covering the obvious loss. 

So keep on truckin' - like it's 1975. ; )

Halfbakedwho - as you know, I live in Flor-ee-dahhhh and I still wear a foundation that has sunscreen in it. I just have to. However, the only time I slather sunscreen on liberally is when I go to the beach or am out by the pool. I use the safe sunscreen that doesn't have all the bad junk in it and fare just fine in the sun. I also have a big hat to cover my head/face/neck as well. 

I was itchy for a while a month or so ago but it's gone now. I chalk that up to stress. The heat of Florida doesn't bother me so much or irritate the FFA, but then I never had a lot of itching or other symptoms other than the hair loss. Could news is, HBW, February is GORGEOUS in Florida. IF it gets up to 80F that would be a miracle!

I avoid sunscreen and found a company called Sun Precautions which markets a really useful clothing line, including swimwear, made with high SPF fabric.  It was developed by a physician for people who are extra sun-sensitive due to either medical conditions or who must avoid sun exposure because of certain medications, e.g. amiodarone (a cardiac drug).

thank you both!! 

I am so excited to go into the sun! I am feeling a bit blobby - so much work and no time (excuses) for exercise. I am looking forward to a break already (after two weeks vacation X-mass/NewYears...) 

If there are any other products or things that you use that I could find more easily in the States, please share! Thank you again. 

Halfbakedwho,

I have tried finasteride and did not have good success with it.  After 12 days I started to have a horrible burning sensation in my scalp.  It would come and go all day and even woke me up in the middle of the night. (I don't sleep well anyway because of the anxiety and depression that I have with this condition so I need all the sleep I can get.)  I stopped taking it and it took 4 more days for the burning sensation to go away.  I was terrified that all of my hair would fall out but that's been 6 days ago and I still have what's left. thank goodness.  I must have had an allergic reaction to it because my lips, face and gums felt numb for a few hours on Saturday.  Everything I have read say that there should not be any side effects and that it is something that stops FFA progression.  It just wasn't going to work for me.  Reading through the comments and discussions on this site it looks like there are several gals who are trying it and have been on it for a while with no problems.

Best of luck in making the right decision for you.

Hugs! 

Thank you Kandy

These days my scalp is really a mess - worse than it’s ever been since I first noticed my hair loss, or since my diagnosis in 2017. I have many little inflamed red spots around my follicles, and now I get the occasional big cyst that hurts - second one in as many weeks. 

Tonight I’m in a hotel, where the bathroom light is different and stronger and I can see the extent of the inflammation. 

I am pretty much resigned to getting helper hair in a year or two, but it doesn’t make my scalp feel any better tonight. What a strange icky problem this is... But no I still don’t want to take Finasteride. I started up my low-dose antibiotics again instead. Like that will make any difference. : / ! 

Halfbakedwho,

Yes, this is the most weird and upsetting condition ever.  I wish there was a pill we could take that would make us better.  This trying a bunch of different medications just hoping for the end of the progression of it is so exhausting and causes so much anxiety and depression.  I know I am heading for helper hair before too long as well and am trying desperately to get to the acceptance stage of it.  What else can we do?  I started Plaquenil a few weeks ago which is a new medication for me.  They say it suppresses the immune system but takes 6 months to start working.  In the mean time my hairline just keeps going back and I feel so helpless. 

Hugs  

Halfbakedwho, Have you given any thought to maybe “trying” helper hair now while waiting for your immune system to kick in?  I suspect you will feel a lot better about yourself and maybe help you accept this AWFUL condition.... your hair isn’t going to grow back - so what you have lost is gone.....  Just a thought.  I know my self esteem took off in a positive direction after I got helper hair - I can’t even imagine NOT having it now..... I will NOT let this disease define me and make me want to crawl into a corner.  

Hi you guys and thank you for the support. I am still not at helper-hair-level yet. Had I a different hair type, I would be, but my big fluffy curly hair is a big distraction from seeing how thin it is in front and on top, and how it's gone on the sides. 

It's just in the mirror up close that I see the extent of the damage and where the hair will be gone in the next few months I suppose. Little red bumps around all my hair follicles on top, thinning, and the past couple of weeks - big cysts that are just bumps - nothing in them - they aren't zits or pimples, just painful bumps. 

I feel like I'm watching all of this go down with a more clinical, distant eye these days - almost like I care/don't care. Yes, probably denial. But I have so much on my plate - two cities, many different gigs going on, coming to the States (hi CurlyK) in February - my scalp is just not high on my list of priorities. 

Distraction and Denial - very helpful! Thumbs up, recommend. You don't have to credit me, even - I give you this method for FREE. You're welcome. 

I can no longer access the cannabis product I have been using on my hairline. Does anyone have any recommendations for products that are working for them? Any recommendations appreciated. I have found that the topical application has been very helpful.

I was doing so well...but.

Two days ago,I got a tell tale red dot in my left temple. Lately, when I get out of the shower the hair in the front is a dry knotted mess and I’ve noticed a lot more hair by the shower drain. Hubby is so supporting when I feel so low. :( I get my hair cut tomorrow and I hope a trim and highlights gives this mess a bit of a boost. 

Some days I think a wig would solve everything but it won’t since my chin and cheeks are pitted with dents and I miss my eyebrows. Tomorrow I might feel better-today I’m angry and sad that I have this stupid disease. 

*sigh*

as always, thank you for listening. 

Hubby is very supportive. I reread what I just wrote and it might have been misread as sarcasm. I don’t know how I’d handle this without him. We’ve both had our share of random medical issues at too young of an age. Makes you stronger I guess “We’ll get through it.”

Somehow.

Hi illustr8r,

You are so right, this is a stupid, horrible, awful disease and you are very lucky to have a supportive husband to be in your corner and cheer you on!  I hope you have a lovely day at the salon getting your hair done- it is a great feeling to walk out with a new cut and color after being a little pampered and it will boost you up a bit :-)  

Erika B that is exciting news about the laser therapy.  I too have been to Dr. Donovan when he used to see patients at Women’s College Hospital in Toronto in 2015.  This sounds like a new break through since I saw him.  I recently have ordered an integrated hair system at a clinic that’s been in business in Toronto  for 40 years.  While I was there I noticed a poster on the wall of a device called a LaserBand 82 (by Hairmax).  The owner said they’ve had some success with our condition and laser treatment.  He mentioned Dr. Donovan had referred some people to him for laser treatment.  How long did you have the treatment before results were noticed?  Is this something you do at home?  Do you purchase the laser cap? Is it costly?  This is exciting!  Thanks.

Hi - yes there is a place downtown here where they are offering this light/laser therapy - I am wary about the cost though. Erika does this require you to actually go into his office for the treatments every day? 

Did any of you see on the FB group page that there is a new FFA article published online that's very recent? It defines more clearly who has LLP and who has FFA as in they're two separate-related entities. I used to think I was more the straight FFA, but with my current scalp-state, I may be wrong. However, I still have my eyebrows which are thinner but not red-bumped. 

It seems to me that the top/front of my scalp is just filled with those red dots these days - illust8r- and the skin doesn't feel so good either. 

But I'm in good spirits. I may have asked you this before but if you could provide me with a list of American products that have seemed to help you - CBD oil, Aloe Vera stuff, whatever, I would appreciate it. Leaving in two weeks. Probably will lose more hair, because I'm visiting family. There's a reason I live on the other side of the pond, though it obviously didn't save my hair, alas. 

Hi everyone,

Having a really down day today.  I went to do the grocery shopping and noticed all of these women - some much older than me - and they all have their beautiful hair.  I couldn't get home fast enough to hide away in my house.  I live alone. Today I feel like I have a huge boulder tied to my heart.  I miss my happy self.  Now it's hard to find joy in anything or anyone.  I live in northwest Florida  along the beautiful beaches.  Several family members are wanting to make their visits to my house like they do every year but I don't want anyone to come.  I don't know what my hair is going to be doing this summer or if I will be trying to find helper hair and getting used to it.  I look at pictures of myself from just last summer and I have my hair and look so happy.  Now I'm so extremely sad.

I would like to get a bonded hairpiece but there are no locations close to me.  The only one I can find is the one that CurlyK uses in Tampa - 8 hours away.  I still work so it's not an option due to the required monthly maintenance.  There is only one wig store in my area and the ladies there seem less than helpful.  I think they are trained to just plop a wig on someone's head - no muss, no fuss.  Plus they all still have their own lovely hair so how can they even understand my plight and my fright?

I can't for the life of me understand why I got this disease.  Don't drink, don't smoke, don't do drugs.  The harshest thing I've put in my system are birth control pills way back in the day and blood pressure medicine.  I have seen posts about the flu vaccine maybe being the culprit.  I got my first one about 4 years ago and shortly after that is when the rash that would take away the hair from my temples to my ears appeared.  I didn't get another one until this October and lo and behold my front hairline starts with a rash in November.  I've lost about 1/2 inch there over the past two months and it makes my temple area and no-sideburn area look worse.  Hairloss there is about 1-2 inches. 

I am so so so thankful for this site and for all of you. I read comments even from way back when it first started and wonder how those ladies are faring and how they have moved on.  Thanks for listening.  It makes me feel a tad better being able to put some thoughts down in words, knowing that you won't judge me or tell me " it's only hair!" 

Hugs to all of you incredible ladies.