alopecia barbae

My Invisible Enemy: Mike’s alopecia story

As I explained a few posts ago. I want to share other’s stories with you. This one comes from Mike, from the USA, who wanted to share his alopecia journey and how he found his trigger. I’m sure you will enjoy reading it as much as I did. Over to Mike.

The beginning

Life was finally going the way that I wanted it to go. After many years of dating and casual relationships, I got engaged to the love of my life on February 17th, 2018.

In late March, we closed on our first house. I can easily remember my last weekend as a “normal” person. On Friday April 13th, we saw Billy Joel at Madison Square Garden. That Saturday, we walked for miles in order to explore our new town and had brunch at a nice outdoor cafe. We then went out for dinner later that night at a Peruvian restaurant before we picked up drinks and cigars. We then went back to our home and listened to music in our living room before retiring for the night. That Sunday, we ran around a track in town before spending the rest of our quiet Sunday in our new home.

I always take a week vacation in April and I was looking forward to getting a lot done that week while my fiancee was working. That Monday, like any other Monday, I was shaving with my electric trimmer and thought I nicked myself. There was a small bald spot by the right side of my mouth/goatee area. I thought nothing of it until Tuesday night. Looking in the mirror, it was like the spot had grown bigger and there was a second spot forming around the right side of the jaw line. This was less than three weeks after moving in to the home.

I had heard of alopecia, but I didn’t know it wasn’t curable and I didn’t know that treatments were hit or miss. Everything that I read that night on the internet scared the crap out of me and my many months of constant mirror checking started that night. I felt a little better when I was able to book an appointment with the dermatologist that Thursday. In my head I was saved. I was going to go to the doctor and I was going to get the help I needed. Soon, this would all be a distant memory. I could not have been more wrong.

The dermatologist I went to see was really a Nurse practitioner. But she initially seemed like she knew her stuff. Of course she wanted to blame stress for my hair loss, gave me steroid injections in my face and told me to come back in a month. She was pretty direct and explained to me the disease could travel to my scalp and eyebrows. I asked several other questions which she couldn’t answer. For whatever condition I went to the doctor for, this was the first time I couldn’t get any answers.

Stress and anxiety

I began to think about how stress may have played a role in this and it made sense. I had recently switched schedules, so I wasn’t sleeping anywhere near as much as I used to. I was dealing with a lot of annoying micro managing at work which was pissing me off nearly every day for the past few months. My father had several medical issues and needed a lot of care. However, no matter what stresses I may have had prior, once the hair started falling out, the real anxiety began.

It was absolutely consuming me. I was scared all the time. I gave up Protein shakes because I thought that was contributing to my illness. I also stopped drinking alcohol and gave up sweets. I was gobbling down anything considered anti inflammatory. I was miserable. My personality was drastically changing. I became very withdrawn. I felt like I could no longer enjoy things in life which I had previously enjoyed my previous 32 years.

Further symptoms

I tried to maintain a routine and continued to work out. A week after my first dermatologist appointment, I started to calm down a little until one day after working out in the basement, where I had set up my home gym, my entire scalp broke out in rashes. I had also been getting other strange symptoms like twitches and burning sensations throughout my body. I broke down and cried for the first time. I had no idea what was happening to me. I went to an urgent care center that night only for them to tell me to follow-up with my dermatologist.

The next day, I took off from work and visited my dermatologist again. She pulled on the hair around my rashes and the hair stayed where it should. She gave me a prescription for a topical steroid but instructed me not to put it on where I had previously been injected. I then went to my Primary doctor and got a blood test in hope they would find something wrong with me which would be treatable. I cried at each appointment and of course my blood work came back fine. I was also advised from my primary care provider that I must be stressed and because of this I was told to give up caffeine and offered a prescription for Xanax which I refused.

I couldn’t believe this was happening to me. It felt like a nightmare that I couldn’t wake up from. I tried giving up coffee which made me even more miserable. Life as I knew it up until that point was over. After a month,

I went back to my dermatologist for my 2nd round of steroid shots. I felt a little better that day since I was told I had white hair growing in my bald spots. I then went back home and tried to continue my positive attitude. I tried using my basement gym again, I went upstairs a couple of hours later to shave and to my horror noticed a brand knew bald spot on the left side of my chin. My positive attitude lasted a whole 2 hours.

Part 2: Downward spiral and depression

From this point, it was a downward spiral. After countless hours researching web md I convinced myself that I had sleep apnea. This theory was supported one night when I constantly woke up from hypnotic jerks. That night and morning were torturous. Every time I would wake up with a hypnotic jerk, I felt like I was making my alopecia worse and would get stressed on top of it.

By June, I was the walking dead. Alopecia had completely overtaken my personality. At work, people knew I was acting different and something was wrong. They all told me not to stress and that my slowly disappearing beard wasn’t even noticeable. By this point I had no use for my electric razor and had to clean shave every morning. I talked to several other people that have had bouts of alopecia, but everyone seemed to get relief after a couple of appointments with the dermatologist.

At this point I had lost weight and muscle tone which really depressed me. My relationship was suffering, because I was depressed all the time. I wasn’t enjoying the things I used to enjoy. I no longer felt attractive to which I was constantly told I was vain. I started seeing an actual dermatologist by now and he gave me steroid shots and cream to put on twice a day. Unlike the nurse practitioner he insisted I put the cream on the injected spots. Of course he told me to try to lower my stress levels. After all, alopecia is brought on by stress right?

My nemesis…

After many dead ends, and more doctors visits I finally found something which gave me a glimmer of hope and became my new nemesis. I discovered mold in my basement ! Lots of it. I had been working out in the basement and breathing all the mold spores in directly. I had researched mold quite heavily after this and read how mold can make people lose hair through histamine or inflammation. One common word that would always come up while researching alopecia was inflammation. There didn’t seem to be any article directly linking alopecia to mold but I did come across many hypothesis about mold possibly triggering an auto immune reaction in some people if they’re genetically predisposed to it.

I immediately scheduled a mold inspection at my home. After several days the results of my inspection came back and remediation was scheduled. The air quality test informed me that the counts of penicillum aspergillus mold in my basement was 2,500. On the 1st floor it was 1,100 and on the top floor was 850. I was told by the inspector that mold count indoors should normally be less than outdoors. Although there is no set standard on the indoor levels, he did explain that the counts start to get problematic if they’re over 1000. However every person is different on how they will react. Mold spores are microscopic and cannot be seen by the naked eye. When I asked about my hair loss, he replied that it was probably stress.

I was convinced mold inhalation was the source of all my problems and finally felt like this nightmare was starting to end. I started seeing a few thin white hairs where the spots on my beard had disappeared. In July my fiancee and I took a trip to Lake George. When we arrived home, I noticed the first bald spot on the top right portion of my head. I was officially depressed again. I hated my house and felt like there was no where I could go without risking other aspects of my life. I blamed the house for everything and constantly wished that I never moved out of my previous apartment.

The rest of July, August and the first half of September were low points in my life. Most of the frontal portion of my beard was gone. I was still able to comb over the bald spot on the top of my head and found out I was very artistic with Toppik, a hair fiber filler. I also had about 6 spots on my neck and beard which were coming together. I was still going for steroid injections every 3 weeks and rubbing steroid creams on my face. I wasn’t going down without a fight. I was predicting that I would be shaving my head by November. I kept asking my fiance to assure me she would still love me. It seemed like a silly question but my confidence was completely gone by this point.

I tried to get a prescription for xeljanz , a promising new medication not yet FDA approved for alopecia, but my primary doctor refused and started yelling at me that I was doing a horrible job managing my stress and that stress was why I had alopecia. My response to him was asking him if he told his blind patient that he pleasures himself too much. I would mention to my doctors and family members that I believed mold exposure was causing this and that I also felt like there was still something in the house I was having a reaction to. I was largely brushed off and was given many suggestions to see a professional psychologist or to give in and take Xanax….Once again I refused.

Part 3 : Escape and Vindication

In early September 2018, I had spoken to my original home inspector who felt really bad that he had missed the mold the first time. I told him I still felt that there was something in the home that I was having a reaction to. He agreed to check out my house…this time for free. Upon his arrival he discovered a shit load of mold in the crawl space area which most likely was forming while the other mold behind the sheet rock was being re mediated. Within a half hour I was packed and out the door. We made arrangements to stay at my fiance’s mom’s house in Jersey City until we figured out the situation. I remember the first day of entering my future mother in laws house. I sat down on her couch and exhaled. I didn’t know what the future held but I knew at least at this point I had a chance of getting better. After a second inspection and remediation of my house, the penicillum/aspergillus mold count were as follows:

94,000 in the basement
55,000 on the 1st floor
5,800 in the bedroom.

We made the decision to sell the house and start to look for an apartment. Within two weeks I noticed a lot of thin white hair in my beard. The hair continued to grow but at a slow pace. After 2 months I was able to cut off my comb over. In a long and exhausting war, this was the first major victory for me. All the hair on my scalp had returned and my beard was still progressing to the point where I was able to go a day or two without shaving. Everything was looking great until we left my mother in law’s house.

Part 4: The return and current situation

To make a long story short, I started getting some of the same symptoms in my new apartment that I was getting in my house. They were not to the same degree as before and I initially just thought I was making myself crazy. After a few weeks, the left side of my beard started getting thin again. I paid for my own inspection and of course – mold was discovered in the basement.

The spore levels were around 1000 in my apartment which is probably just enough to screw with me. I’ve had 2 new spots which filled in after a few weeks of steroid injections which I’m still going for to this day. I decided to temporarily stay with my parents but noticed I was getting some of the same symptoms while sleeping on the 2nd floor.

At this point I decided to buy my own air testing machine. My parents 1st floor level was fine but their 2nd floor was 1,200 of penicillum/Asp mold. They are currently going through their own mold remediation and hopefully will have a safe home by the end of the week. Just to prove my point even further, I tested my mother in law’s house which had a nice low mold spore count of 400.

February 2019

My landlord cut out the moldy sheet rock but did not have the building professionally remediated. They still have a 3,000 count in their basement and as of now my first floor scored a 300.

For now I’m undecided if we should stay and have been exploring other options. My belief is that the mold spores will continually travel throughout the home and will probably get worse as soon as it rains or gets humid. We are currently still trying to get them to go forward with remediation but there are currently no laws or legislation on to how mold has to be removed. If the health department can’t see it, then it’s not considered a problem.

The future

Worst case scenario, I’ll go back to my parents until we figure out a new living situation. I’m not sure what other kind of damage this mold could be doing to my body and realize I need to do my best to avoid it at all costs. I know going forward I’m going to be very limited as to the places where I can live.

I’ve come to realize that the craze of flipping houses in America is causing much of the mold problem. These amateur contractors just looking to make a quick profit, buy old leaky houses and throw sheet rock up over dirty walls which just provides a breeding ground for mold.

If you have alopecia or other auto immune diseases, consider getting your home or workplace inspected. Maybe it’s a place you frequent normally like a coffee shop or a gym. Mold might not be everybody’s trigger but it is definitely mine.

A friend of mine once told me a story of a relative of his that had alopecia totalis for four years. She eventually switched jobs and had to move out of her apartment. Shortly after moving, her hair grew back….Of course everyone told her that her current job must definitely be a lot less stressful than her previous one.

Regrowth, regrowth, regrowth

Yes you read it right from my triple title above – my hair is back – thicker and fuller that it’s been in ages. In my last post, I was heading in a downward spiral – in terms of mood and also hair loss – the dreaded patches were emerging again. Well – they’ve all gone from my head and I finally have 100% regrowth. I don’t have to avoid triple mirrors in dressing rooms anymore!

dressing room

Here’s how I maybe managed it

I’d love to say ‘it just happened’ and grew back like last time – but it never. The truth is I don’t know what’s helped the most as I’ve tried to make so many different positive steps.

I made a conscious effort not to head down the same sad, obsessive path I was on way back when this all started. Instead I took affirmative action. I may have started too many things – which is an issue as now I don’t know which (if any) are helping – so I’m carrying on with all of them – as long as my bank balance will allow.

Here’s a list of things I think may have contributed to the regrowth – in no particular order:

1. Low Dose Naltrexone (LDN)

I am still taking the LDN every night – 4.5 mg. I have never really had side effects – I talked about starting to use it here. This costs me £30 ish for every prescription.

2. A mystery potion from the Middle East

When I was in Australia in December 2016, I met someone who told me their regrowth was helped by using a lotion they bought over the internet from a Middle Eastern country. Immediately my thoughts turned to snake oil salesman and the charlatans that I was very critical of in an earlier post which focused on the treatments I’d tried.

Nevertheless I agreed to purchase said lotion – which is pretty expensive. The cost of the treatment is also the reason I’m not name-checking or linking to it here as I feel it’s not ethical to do so. I don’t really know if it honestly works and I don’t want anyone to get in debt because of me, then be upset if it doesn’t work.

If you really want to know the details please message me privately. Though I am in no way endorsing or supporting this product. It is one of the many things I have been doing.

You can private message me via the social media pages that I have created for this blog:

Even if you don’t want to message me – you might like to follow the social media pages anyway 🙂

I paid £400 for a three month supply of this lotion which I was instructed to rub into my scalp every night and wash off the next day. I honestly don’t know if it’s this that’s helping but I’m still rubbing it in every night like a drone anyway.

I have been doing this for around 3 months.

3. Yoga & relaxation

I have tried to make time for yoga as it allows me time to relax and get in tune with my body and mind at the same time. I’ve been practising Forrest Yoga with an amazing tutor in Edinburgh for a while now and it really helps me feel better at the end of a sweaty session!

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Striking a yoga pose on my 39th birthday in Singapore – December 2016

It’s also really handy as it’s near my work. If any of you ever get the chance – swing by Leith Yoga studio for a class with Janet.

4. Therapy

I think as a result of the years of stressing about being stressed, worrying about hair loss and analysing my thoughts – I’m finally pretty in-tune with myself and tend to realise when my body and mind are stressed, manic and winding out of control.

I can usually feel tenseness in my body or hear the internal chatter building to a crescendo and either loosen up or quieten down to try and combat the feelings that used to spin me out of control.

To help with this – earlier in the year I started talking therapy. I have done this once previously – 6 sessions recommended by my doctor when my hair first started falling out. This time it’s different – I’m paying for this therapist and can talk about whatever I like.

It’s rare that we get a chance to openly talk about our lives and what has contributed to make us the people we are. From family to work and relationships – everything has an effect and impact on your current view of the world and yourself. I have found it really helpful to be able to discuss all of the above with my therapist. I am going to keep going in the future – but not as regular.

5. Vitamins

I’ve been gobbling a handful of pills every morning on top of the LDN. As I mentioned a few posts ago – the concotion I’m self-medicating with includes the following capsules:

Vitamin D
Turmeric
Vitamin C
Acidophilus

Hair Tonic

I’m still taking the Chinese medicine – in the form of a capsule with Phytofol -this herb is used to nourish the liver and replenish Kidney energy (Jing) to promote healthy hair follicle function.

So what’s next?

I’m too scared to stop using anything right now. I think I’ll wait until my ‘big birthday’ is over in December and wean myself off the LDN and mystery lotion. Am going to keep up the yoga, therapy and vitamins as they are fairly low cost compared to the other two.

I’m currently really happy – loving life and quite chilled out. As I’ve always said in this blog – I think my happiness and contentment is contributing towards my regrowth more than anything I’ve listed above – however:

my mood may not have been so happy had I not had regrowth
regrowth might not have happened had I not proactively taken all the steps above

I haven’t a clue what’s working but I stand by every decision I’ve made as at least I’m doing something and I’m so glad I don’t feel the need to obsess about falling hair at the moment.

I move house in September so we shall see if I can maintain this low stress lifestyle.

I’ll keep you posted.

Reece.

Patchy hair- don’t care

Ok – so that’s a blatant lie. I do care – but I’m adopting a much more relaxed approach to falling hair – when I see it on my laptop, desk or pillow I flick it off and try not to stress about it – most of the time.

What’s changed?

Nothing, I just know from past experience that stressing will not help me in the slightest. I am also trying out my ‘mini habits’ in an effort to curb stress and freak outs. They seem to be working.

The spots

O.K. so the hives/urticaria are still coming and going and I’m unsure if they are caused by emotional stress or intolerances but they remain a constant at the moment.

Is the hair loss following the same pattern as last time?

Nope. It is now coming away everywhere! Last time it was confined to my head – face and scalp. This time my chest hair is taking a beating. Have a gander at this:

The chest

Last time I lost hair on my scalp, I didn’t really lose any on my chest – apart from one wee dot – which as you can see has now spread and had lots of little spotty babies dotted in random places across my chest.

Patchy Chest

My scalp

Alopecia patch

Patches

I keep looking at the patch on my left side whenever I get out of the shower – but the same apocalyptic feelings just aren’t there as much anymore – I give a wee shrug and feel a bit shit but so far I can pat hair over it and carry on with my day. When the day comes – or should I say – if – it comes, I have a handy pair of shears with my head’s name on them. I’ve done it before and have no issue with shaving it all off again.

I do have a few patches on my head but they seem to be minimal compared to the fast spreading ones on my chest. And like I said – I’m really not that bothered at the moment

The good news

My facial hair seems to be returning! Amidst all the shedding, my moustache is making a bit of a comeback. I am not going to rival Tom Selleck anytime soon but it’s coming back very, very slowly.

So I can now have a moustache! Ok it’s patchwork kind of moustache but it’s mine, I grew it and my face feels ‘normal’ again. It’s like I’m 14 again and trying to prove I NEED to shave. I forget it’s there but every time I see it, I have a wee smile.

So I was off work for a full week and didn’t shave. This is the result:

14 year old flashback

Those wee white hairs on my chin have been there since September 2012, when I hoped they would gradually turn black and grow like they used to. They haven’t so far – so I may rock a badger beard in the future – who knows.

Eyebrows

I’m pretty unsure what’s happening with these former caterpillars. I keep thinking that my left eyebrow is filling in a bit and then i notice wee spots of bald across both eyebrows and the panic sets in again. I can deal with no hair but would rather keep my eyebrows and eyelashes this time if possible.

Eyebrows August 2016

The Future

God knows what’s to come with the hair anywhere on my body. I’m heading to Australia, Singapore and Thailand in December so who knows if I am going to be getting my bald head burnt or crossing continents with a decent head of black hair. I’ll keep you posted.

Practice what I preach?

It’s time to take heed of my own advice – as some of you who follow this blog may know – I recently started growing my hair in as it has started to come back all of a sudden.

Not yet ‘full circle’ – damn it!

A strange thing is happening – some people who got to know me P.A. (Post Alopecia) now imagine me as always having a bald head or a fair complexion. Which is crazy to me as I have always had really dark black hair.

When the hair started to come back I thought “Ah this process is like a circle (cue ham fisted analogy…) I am coming back to a full head of hair – full circle – onwards and upwards. The circle analogy also worked when analysing my actual hair or lack thereof – the ever increasing/decreasing circles.

Here is where my circle analogy works – no really:

I conveniently forgot that a circle is the same shape on both sides – to get from one to the other you follow the same shape and in my case – to go from no hair – to growing more – I am experiencing the same feelings. This isn’t great news.

Jesus that was laboured! Apologies – maybe my wee doodle will help explain what I’m not articulating that well…

Circles! That appear as ‘missing patches’ and the trajectory of feelings you go through. From bad to better and back again

I now seem to have regressed to a state of embarrassment and acute paranoia as the remaining holes (or circles if I am to flog this damn ‘circle‘ related analogy) seem much more visible thanks to the abundance of reappearing black hair – highlighting the fleshy pink islands of baldy skin.

top of a head recpvering from alopecia areata

March 2015

Some recent comments from colleagues and folk I have met since having a shaved head:

“I can’t get over how dark your hair is”
“I could have sworn you were blonde”
“Ooh I am going to have to get used to the new you”

A couple of people haven’t actually recognised me or done the dreaded double take. Which happened ALL the time when I was losing my hair – especially when I had just shaved it off and had zero eyebrows.

My AA meetings

Some people I see regularly didn’t even know I had alopecia and (I hate to admit this) but I have started to revert to my old stock ritual of blurting out “I HAVE ALOPECIA” added as a tag on to any conversation with a person I suspect is wondering what the f*ck is going on with my hair.

My justification is that I am making people feel more comfortable but I know it is really down to low self esteem and panic that they may think I have mange! 🙂

How am I dealing with this?

I have gone back to my old faithful wardrobe of hats – detailed here and seem to freak out when I have to walk around sans hat! Which is every day at work 09.00 -17.30.

I walk to the shops at lunchtime with beanie pulled firmly over my head – not usually an issue with the bleak Scottish weather – though today was sunny, I had a wooly hat on – a sweaty head and decided -TAKE YOUR OWN EFFIN ADVICE!!!

As a result, I have been thinking about the advice I have given over this blog and to many people who have emailed me. I have just read through all of my correspondence from you amazing blog watchers and re-read all blog posts, to try and take heed of some of my own advice.

My advice – which I need to tackle ‘head’ on:

Walk tall and let people look – They can look and think what they like, their stares or opinions will not impact the growth of my hair BUT letting potential stares worry me COULD.
Stop worrying about the hair – Worrying is not a valuable past time – especially when worrying about an auto-immune condition that may or may not be triggered by stressful situations.
Stop running my hands through my ever increasing head fluff (and waiting to see hair come off in my hand) My hair is not falling out like it was so I need to STOP looking for something to be sad/worried about.
Stop staring in the mirror – My reflection isn’t going to change in an instant and staring at something for long periods of time leads to obsession and distortion. Try staring at your nose in the mirror for a long time and you will see what I mean!

“Don’t spend time beating on a wall, hoping to turn it into a door”

Coco Chanel

Everyone has their setbacks and I feel I am now in a similar process (looks wise) as I was when I took the decision to shave my head. There are patches of missing hair and I am in two minds whether to shave it all of again or carry on growing it and seeing what happens.

My hair after I first clippered in 2012

March 2015

What I am planning to do:

Having a shaved head is easier in a way as people just assumed – as above – that I was balding, blonde or they knew I had Alopecia.

Growing back the hair and the visual effects I see (or imagine others are seeing) are dredging up the same feelings I had pre head shave but as stated earlier – I am going to keep on trucking and see this through.

Last time the circles were expanding – this time they are slowly decreasing – so I figure that in a few weeks, the remaining patches will fill themselves in slowly over time.

Whatever happens I will keep you all posted! And accept my apologies for the circle analogy I tried to foist on all of you!

Thanks everyone for sharing your similar stories, words of encouragement, your images and best wishes.

Cheers

Reece

Addendum:

I am thinking of adding a forum to this blog so other people can share their stories and speak to whoever else they want to. It has been cathartic, extremely helpful and so unbelievably positive chatting to you all so far and I would like the many people who have emailed me to have an easy to use, open network of communication from which they can reach out to other people in a similar situation for advice or support.

Let me know what you think and I will get a WordPress plugin for forum functionality.

Hair update

So, I decided a week or so ago to ditch the razors and let my hair grow back….

Here’s a video about ME…

I had to create a 2 minute intro video a while ago (for a Digital Marketing course I am doing with Google). I gave this blog a shout in the video but didn’t actually share here. Sorry folks.

Anyway – here it is…

As you can see – I am still ‘rocking the bald’ despite getting almost full regrowth – I am still shaving my head everyday until it all grows back – then I will attempt to regrow my receding hairline into an actual hairstyle!

It’s been a while – will be a novelty buying hair styling products again!

As usual – feel free to ask any questions or send me a private message if you prefer.

Cheers

Reece

Me. November 2014

Well here I sit on the beach in Edinburgh with Kitty – my puppy. Almost a full head of hair (apart from a slow growing patch at the back and a few tiny wee holes dotted around).

Oh yeah and pretty much one and a half eyebrows and full set of eyelashes!

Photo update – my Alopecia and regrowth – 2.5 years on.

Howdy Blog watchers

I am so sorry for the delay in posting pictures. I have been pretty busy with the birth of our wee girls 7 Boston Terrier puppies. Check the cuties out here.

Back to the hair – enough puppy chat/excuses!

Here I am attempting to show you (in pictures) the spread, loss then regrowth of my hair over a 2.5 year period. My Alopecia started as little spots on my chin back in November 2011. I thought it was just Alopecia Barbae and was still distressed- then it gradually spread and I shaved my head in 2012- detailed here.

Where it all began – first ‘spotted’ in November 2011 and by the time it got this big – I was officially scared, depressed and stressed!! (March 2012):

Two spots of nothing.

Comic Hitler ‘tache

Chunk missing

The first image was taken in June 2012.

Once my facial hair began to disappear – so did my hair: The first spots appeared/ hair dissapeared in July 2012.

The big shave

So I shaved it all off on holiday in Spain in August 2012

Baldy Bald

And here is an above head shot from when I first shaved:

The solar system at the start

Is there any hope?

I started to notice thin white hairs growing back into my facial hair loss in September 2012

regrowth on my chin

September 2012 regrowth – Egypt

I was hoping that the blonde would go black straight away – it didn’t.

My hair kept disappearing, too: here is a peek from the front and top (both taken in October 2012).

From the front

From the top

October 2012

My right side

In the middle of my long alopecia episode

November 2012

Right side

Left side

My eyelashes and eyebrows started to disappear in November 2012.

Eyebrows up close

Disappearing caterpillar

The eyebrows were a low ebb – but the loss of my eyelashes are what made me feel more alien – literally. It is a strange sensation not having eyelashes. People gave me a second look as they couldn’t quite put their finger on ‘what wasn’t right’.

I have detailed in another post my experiences trying to hide my missing eyebrows.

In case you can’t be bothered reading that post and want to see what my pencilled-in efforts looked like:

Pencilled-in eyebrow as of November 2012

I tried a number of different ways to regrow my hair or at least hide the fact I had Alopecia, but found that a close shave (in the end) was best. At this point I was shaving my head daily and ignoring the ever-decreasing eyebrows and lashes.

My facial hair was also fast disappearing – again taken in November 2012.

My chin

From the side

December 2012

The patches started to spread quicker – which made my Christmas elf hat less itchy as there wasn’t as much stubble to aggravate it.

As you can see from the images below most of the holes started to join up with each other especially the two big ones at the left hand side! I hate those two bad boys.

My head from the back

The left hand side of my head

Happy New Year 2013

In 2013 it seemed to progress quicker. Here is the top of my head taken in January 2013.

February 2013

At this point I was still wearing beanie hats and pencilling in my missing chunks of eyebrow.

March 2013

This was when I started realising that my eyebrows were more or less drawn on and I saw a picture and realised it was time to get rid of them.

Abi and the eyebrows 🙂

As you can see, they looked fake and I hadn’t realised until I saw the image above. So in March 2013 I shaved them off in the shower whilst shaving my head.

The middle image above makes me look strange and if you look closely you can see that it is because my right eye has hardly any top eyelashes and the left eye does. Not a great look but now I looked bald and possibly blonde?! Just another balding fair haired guy? That is what I told myself and started to walk about without hats – in certain places anyway.

May 2013

Then the hair loss started to snowball and this was when I thought “F*ck it!”
My alopecia was getting worse and worse.
I had become resigned to it and pretty much everyone had seen it and knew what it was.
I still got the odd comment but brushed it off because (finally) I was in a stronger place and didn’t actually care as much as I did at the start.

Now that’s progress!

The images below are from July 2013. As you can see there is hardly any hair left at all.

These images represent the worst my Alopecia got (It seems strange saying that but I don’t want to jinx anything). Then I stopped taking photos as much of my head as I actually forgot about it!

Forgetting about it

Here I am forgetting about it at a wedding in Valencia in September 2013.

Guests at a Valencian wedding

I decided to forget and what happened a month later??? The bastard started coming back!!! Exactly two years since I noticed it going!!!!! My previous post was correct! And there is hope for all you people out there who got this late and are hoping yours may come back in this famed two year period!!!

November 2013 THE RETURN OF MY HAIR!

Whaddya know – it kept on growing through December. Merry Effing Christmas!!!!

2014 – The year of regrowth

The year started well for me.

Here I am in January…. More progress on my regrowth in my next post………

Kisses from Coco

Haaaaaappy Christmas

The treatments and coping mechanisms I tried and how they worked for me…

Well I am sure many of you reading this blog are here to find out what I am currently doing to encourage my hair to grow back!

If you haven’t already read my last post – aptly titled – My hair is coming back. Then you can read that first or after this one – it opens in a new window.

So – what have I tried?

Lots and I will tell you now that NONE really worked for me (in the sense of sprouting back lost hair I mean). Sorry if anyone read this and got their hopes up. However – what didn’t work for me – may work for you.

Hats

abfabfestival

As discussed in my lengthy post which details my hair shaving. I quickly became a fan of hats – all kind of hats.
They were good at hiding it initially – though the wind quickly became my enemy.
Not great for a posh dinner or a fancy restaurant. A cheeky old man even told me to take my hat off in one restaurant. I was tempted to play the “I have cancer card” but decided just to skulk away mumbling.

I digress, hats are OK at first but when your patches become too large and appear under the hat – or if it’s too hot outside and you are continually sweaty – I found it best to get rid. Once I had shaved however I do continue to wear hats in winter.

Professionals

Doctors: My local GP was useless – told me I had male pattern baldness and after much pleading referred me to a dermatologist and gave me anti-depressants (keep reading – that bit is further down).
Dermatologist: Confirmed I had Alopecia Areata (I already knew this) and said:

50% of my clients with Alopecia have had a trauma, stress, death of a loved one – the other 50% have had no such occurrence. It may all come back, some might, or it might never come back and progress to Alopecia Universalis.

His comments helped immensely as I thought – fine – there is no point getting false hope.

half an eyebrow with alopecia

This was my first kick up the arse. He also handed me a leaflet (usually reserved for burn victims and people who have been disfigured through injury). He informed me that “Your image is changing and you need to come to terms with it”.
My metaphorical kick up this arse smarted even more when he delivered that blow.
But now – on reflection – I am so thankful he said it. Alopecia does change you and it’s how you deal with your constantly changing face that helps you overcome your fears!

3. Trichologist: This woman was awful – in my desperate state at the start of my journey I paid her £90 a session to ‘analyse my hairs’ and give me ‘special lotion’ to rub into my scalp.

She then upped the ante and gave me Reflexology – which was lovely – but not worth the extra £50 a session.
She was a charlatan and when I became wise to the fact I was paying this money and had zero results – she had no argument apart from stating that “Your hair won’t come back anyway” – Screw you love!!!

Pills – Anti-depressants – I have discussed that at my lowest ebb – they really helped me from dipping so low.

If you are in a very dark place and they are an option available to you – then from my personal experience I would encourage it.
I am not trying to push my views and again they may not be agreeable to you but they did help me out of a dark hole.
However you should always discuss in detail with your doctor and partner/loved ones before making this choice.

Hair regrowth tablets: My doctor gave me a prescription for Propecia (which I had to pay for). I felt this worked at first but after a year – no change.

Lotions and potions: I tried the lotion that the ‘trichologist’ gave me which as I stated – didn’t work. I toyed with minoxidil but after my propecia failure – decided not to.

Garlic and Onions! I tried this after reading that in India that rubbing one or the other on the head on the patches encourages hair growth.

This theory was solidified when my Indian neighbour noticed my patches and offered to bring me garlic into the house as it “really worked for me”.
I thanked him and said I was fine – then ran into the house and began rubbing it on my head. It didn’t work but did make me and my pillows STINK.

Mindfulness: This didn’t help my hair growth but it did really help my mental health and encourage me to deal with my feelings.

Diet and lifestyle: I cut out sugars, caffeine, carbs and alcohol – all at different times – some for over 6 months – again no change – apart from the fact I obviously felt a little healthier (and deprived).

Exercise: I tried to keep fit – which boosted my mood and energy levels but did nothing for my hair. I had read that endorphins and hanging upside down helped so I did a reverse bungee jump and an actual bungee jump. Nothing.

Cosmetics and stuff

I tried spray on hair – for two minutes to cover my patches and realised I looked like David Gest so immediately washed it off.
Glasses to hide the eyebrows
I successfully used eyebrow pencil for my eyebrows for a good few months – detailed here.
I enquired about a hair transplant then realised all of that would also fall out
I used a sun-bed when I first shaved my head to make my newly bald napper look less milky white – served a purpose at the time but would rather be pale than have skin cancer!
Glasses – used to hide the fact I had no eyebrows – I kind of liked the hipster look but wasn’t ‘kewl’ enough to pull it off.

So what DOES work?

I haven’t a clue – nobody does. And all these people telling you they have a cure – are full of crap.
In my experience it all comes down to coming to terms with how you look, may look and accepting how people perceive you.
Don’t compare yourself to your past self as you wont look anything like that image. I had dark black hair and bushy eyebrows. Now I have no eyebrows and a patchy head.

Cookie – crumbled. Sometimes a dose of tough love to yourself and a reality check is all you need.

Cheese

Acceptance is key – as are a supportive network of people around you – cheers to mine! And go seek out yours.

My hair is coming back.

My hair has slowly started growing back.

And I mean painfully. Slowly.

Creeping back into existence…

regrowth on my chin

I first noticed it coming back and blogged about it way back in May 2012.
The image to the right shows my face squished against a black bag under a bright light so you can see (if you look really really hard) that there are some hairs there!
But that was all it was – wee whitey/blonde hairs that needed to be shaved off my face everyday.

I just carried on and forgot about this.

THEN – all of a sudden. . . .

January 2014 – my partner (who takes all the pictures I share with you) said to me:

“Put your head down a second!”

After looking puzzled then twigging it was about my Alopecia (and therefore my vanity) I whipped my head down.

Arghhhh “It’s coming back! It’s coming back”!

Photographs

Naturally I wanted proof of this – here is an image from March 8 2013.

slowly slowly

And here is an image from January 2014

My head in January 2014

Woohoo – still a long way to go but I am getting there.

I hope that my regrowth has given some of you a glimmer of hope.

Speak to you all soon and please get in touch with any comments, queries and concerns.

Reece.