regrowth

The ‘monochrome leopard’ look

The familiar pattern has returned.

When I say pattern, I mean the loss and regrowth – but I could just as easily mean the holes on my head where hair should be. This time I have done something slightly different to deal with the oh-so familiar cycle of hair loss.

Covering up

Since mid 2018 – I’ve been hiding (hair loss) in plain sight. I’ve been using a spray and fibres to cover patches – which help me feel more comfortable in everyday life. Times such as:

going out somewhere
heading to work
standing in a queue
sitting in front of someone on the train

Times where you just want to blend in and deal without the paranoid feelings creeping in that people may be looking at your strange hair pattern.

Why did I do it?

I always thought I wouldn’t do this and ’embracing the bald’ was the way forward for me – this was also the reason I shaved all my hair off the first time. But this time, with experience – I knew that every time I shaved it – the bald patches would be really visible due to my dark hair regrowth – so I decided not to.

I only applied to the huge patch/Friar Tuck spot in the front of my head and (very occasionally) on the larger patches at the back of my head. Here’s the huge patch which has been growing and actually changing in size over 2018/19

August 2018

The middle patch in August 2018

The spot remained the same – and covering it helped me feel more confident and able to walk around without feeling like people were staring at the spot in the middle of my head.

June 2019

Still hanging around in 2019

As you can see – it didn’t budge in 2019. And it is still here in 2020! However it is slightly different this time – more on that later…

How I did it

If I wasn’t working, going out or heading off somewhere – I didn’t bother spraying anything at all. I feel comfortable with my family and friends seeing the patches – and if I needed to go out and couldn’t be bothered spraying – I could always wear a hat if I really wanted to.

I used a spray and fibres and it looks like this (This post is not sponsored and unfortunately I have paid for every item I have bought). Though I bought the ‘black’ version, not the dark brown ones as pictured.

If I was going somewhere or wanted to cover the patch then I:

styled my hair with wax
sprayed the black ‘disguise spray’ onto the bald patch
dropped some fibres over the area
finished with a fixing spray (strong hairspray)

– et voila. It seemed to work.

Here’s a video of the daily spray – it takes under a minute

How has it worked for me?

Well nobody has ever noticed the spray – or were too polite to say.

As far how I felt using it – most of the time, I was fine with it – unless I was:

under a mega bright light
already feeling low
caught in a sudden downpour of rain

And even when I was caught in the rain – it didn’t ever ‘run’ or stream down my face.

The times I felt uncomfortable were few and far between and it just allowed me to get shit done without obsessing about my hair – which lets be honest – I (and anyone else reading this) has probably done enough of over the years.

It allowed me to give my brain a break for very little effort.

I was sceptical at first and didn’t want to use it and have constantly been asking my partner and friends – is it time to shave it all off? And they keep saying ‘No’.

Abi and the eyebrows 🙂

But these were the same people who encouraged me to use that god awful eyebrow pencil and we all know how that turned out… WHAT WAS I THINKING?!?!?!?

So what’s happening now?

I’m posting now as I’m aware I have been consistently losing and gaining hair. I have been spraying and didn’t really want to give a depressing update to anyone that follows this looking for hope.

But a number of people have asked how I am doing and wanted an update and some of you who have now become friends keep saying “your hair looks fine in your pics on social media” so I thought it was time to come out with the truth.

I HAVE BEEN SPRAYING THE BALD AWAY

I am still using it when I feel like it – not everyday – though have been reaching a point over the past 6 months where I want to shave it all off again – as I feel like a fraud and just want to be more comfortable in my own skin.

This would then mean shaving my head everyday and I don’t know if I want to do that either.

2020 update

Here’s the big ‘Friar Tuck’ spot with white regrowth – at the end of January 2020

What’s Next?

I will continue to use the spray occasionally, until either the hole finally closes up or I get too pissed off and shave my head. Either way – I will try to update you in real time.

I have noticed that some of the hairs in the spots I was spraying are actually growing back – but white. I now have an ever increasing collection of white patches all over my head. Have a look:

Left

centre

Right

Now I can’t be too sure if this is just normal ageing and I’m getting grey. Or is this the non-pigmented hair coming back before it turns black again (which is what happened last time).

I also can’t be sure that the huge spot isn’t just a part of male pattern baldness at the age of 42 – but it is a very alopecia sized spot and there is grey hair growing back in there. so who bloody knows?!

Anyway – that is my very overdue update for 2020. I’m happy to carry on looking like a monochrome leopard – for now.

Photo by Adriaan Greyling from Pexels

Yusuf’s story

As I explained at the end of my last post. I want to share other’s stories with you. This one comes from Yusuf, a business owner from London who wanted to share his alopecia journey. I’m sure you will enjoy reading it as much as I did.

A man sat at a desk with slight alopecia on left eyebrow

Yusuf at work – can you spot the alopecia?

When I was 34….

It all started in 2015 well, June 23rd 2015 to be precise, a date imprinted in my memory and my iCal (more on that in a bit).

I woke up one morning with a semi-circle missing on my left eyebrow, at the time I didn’t think much of it, I just went about my day, telling myself nobody would notice and indeed, nobody did.

About a week later, semi-circle still there I found myself on google (they say the devil makes work for idle hands!)

Googlemania

“over night bald patch”, “eyebrow suddenly fell out”, “why is my eyebrow falling out?” were some of the searches I typed in.   While many reasons came back there was one that kept on appearing: Alopecia Areata. “What?!”, ok more specifically: “What on earth is that?!”

So that was the next fateful search.

Imagine a Hollywood film, the slow motion typing, the dubbed clicking sound and then the inevitable search results.   With it my heart sank….   The first results came from sites like NAAF…. “An Autoimmune condition, Some people lose some hair, others lose all their hair including body hair”   “Some”?? “Others”?? I’m a computer scientist! I need statistics, I need figures, and I desperately was not getting these from NAAF.

Forums

My next port of call was Alopecia World Forums and that was when it really began to sink in, and with it depression and anxiety.   I tried to bargain with myself, I have no other patches, nothing on my scalp, it can’t be alopecia areata, I don’t want to lose all my hair.

I mentioned my iCal earlier, because as well as inputting the day I first noticed the eyebrow, I started more inputs: Predicting the day more patches would fall out in line with what I read from stories in Alopecia World.

I entered what could only be described as grieving, didn’t want to know anything from my wife, my young son, my business, my krav maga group – basically anything that gave me any fulfilment in life.

Instead I found myself shut away, constantly google searching people’s alopecia stories, and they all seemed have a version of “It started off as a patch and quickly turned into AU (Alopecia Universalis …. where you have zero hair anywhere on your body)

Doctoring the facts

I was scared to go to the doctor as I didn’t want my self-diagnosis confirmed, but I was dragged along by my wife….

He looked at my eyebrow and examined my patch free scalp and look puzzled, his exact words were “It could be fungal, it could be alopecia areata, my working diagnoses is alopecia areata…”

My first thought “Why is he so calm about this?! I’m about to lose ALL my hair” I vocalised this immediately to him. He looked at me with a puzzled expression

“This maybe as bad as it gets”

I wasn’t listening….   I persisted: “I go online and all I see is that isn’t going to be as bad as it gets, this is the start of AU!!”   (I should add he’s a very good doctor in the ‘twilight of his career’)

He very calmly said to me “I’m yet to treat anyone with alopecia areata who’s gone on to lose all their hair”. I wasn’t listening, I left his office in a bit of a depressed daze.

More diagnosis

Three months passed and slowly, my eyebrow continued to shed, in a diffuse type fashion. Leaving me with a patch missing in the middle of my left eyebrow (As much as I love scarface, I didn’t love the look one bit!)

Having had no other patches fall out anywhere else I desperately was still looking for a ‘get out’

‘It has to be fungal!’ I kept telling myself, I was in Indonesia a few weeks before this all started I must have some sort of exotic fungus! Back to the doctor I went…

I think more worried about my panicked state than my hairless patch he prescribed my anti fungal pills. I dutifully took them and began to see slight regrowth!

REGROWTH

The regrowth was very fine and slow… and it kept my anxiety down for a few weeks, until it came back with a vengeance!

It was now December and I finally decided to visit a dermatologist (looking back now, it was more of a bargaining to myself, regrowth had started so I was hoping it still wasn’t alopecia).

FUN-GUY

£250 for a consultation, She looked at my eyebrow and said: “There’s regrowth, no exclamation mark hairs, 50/50 fungal or Alopecia Areata” She took fungal swabs which will be back first week of new year.

Convinced it was fungal, I felt happy and left.

The New year came and my results came back: no sign of fungus! By now my eyebrow regrowth was starting to come in, so I put this whole ordeal to the back of my head (not forgotten, just not thought about every moment of the day)  .

My eyebrow grew back, no other patches appeared so still not entirely convinced I have Alopecia Areata I just put it down to “one of those things” and moved on with my life.

Alopecia II – the revenge

When I was 36….   September 8th 2017 to be precise, again a date I really should never forget (unless I want to be homeless! It’s my wedding anniversary, and this one was my 5th)

I was in the bath, with my longish locks lathered in shampoo, when my wife walks into the bathroom (I assure you after 5 years of marriage and together for 8 years at this point, this is not going to turn into literotica!)

“Leave me alone! I’m trying to relax” I said “I’ll be quick, just need to get some…… hold on! you have bald patches?!” she exclaimed.

Resting heart rate suddenly went tachycardic…  She dutifully took some photos with my phone, I could already see in the preview what was to come…  Two bald patches, separated by a CM of hair. One was the size of my thumb print and it’s tiny neighbour (or garden extension as I later referred to it as) about the size of my index fingerprint.

Panic

I got out of the bath, and all the feelings that I had two years prior came flooding back….   This isn’t fungal, who was I kidding? this IS ALOPECIA! and this time it’s on my head, last time I got ‘lucky’ this time I’m going to get AU, those were my thoughts. I began to shake.

I had to goto NYC on business the next day, which was by far the worst trip of my life. I love NYC, I Love the USA, I hate having something that follows me.

My bald spots were on the top right side of my head, very easy to hide, I didn’t even need to change my hair style.

That wasn’t the point however, I ‘knew’ I was going to get more, that I was going to be one of those stories I read on alopecia world “I woke up one morning, all my hair was on my pillow….” , “One day I blinked and all my eyelashes came out….”

Dermatology – AGAIN

From NYC I called my dermatologist back in the UK and arranged an appointment for the day I flew back in, no more burying my head in the sand, this is real now.

On the day I visited her, I was a total wreck! she looked at my patches and her words:

“It’s alopecia areata, it will grow back, but it is likely to reoccur in future”

She was so calm about it! I’d heard of “Keep calm and carry on” but this was ridiculous!

So I opened up to her about what I read on alopecia world and various groups.   In her perfect Oxford Educated english she looked at me and said “Stay away from patient support groups, if you really want to know about the ‘average’ case then speak to medical professionals”

She gave me a topical steroid cream and told me to apply it twice a day for two months and return.   After two months I returned and she was pleased, “You have regrowth and no signs of any other patches!”

The future

It’s been 7 months since that day and while the patches are not completely gone, they have a good amount of regrowth.

A Bit of Background about Yusuf:

Alopecia is his second Autoimmune disease. His first is psoriasis which he has had on and off for over 15 years. It was his psoriasis that let him start thinking more rationally:

Psoriasis is a ‘mild disease’ for 80% of people (official stat!) for me to date it has never been more than a few bits of dry skin here and there. I know two other people with psoriasis, both of which unless you knew they had it, you also wouldn’t know that they did.

I’m also a member of Facebook group called the Psoriasis Association, and if I was a ‘newbie’ to psoriasis I would be petrified. I noticed a pattern most of the posts seem to come from about 2-8% of the same people…. Severe Psoriasis affects 2-8% of patients (coincidence?)

Since the ‘confirmed’ alopecia areata date in 2017 Yusuf decided to delve a bit more into his family history:

His mum suffers from Autoimmune Thyroid
He has psoriasis and now Alopecia Areata
His aunt (mum’s sister) also had Alopecia about 4 times in her life, she developed 2-3 small patches, that grew back. Years passed it would repeat in same pattern

Yusuf’s statistics and hypothesis

Alopecia Areata affects about 2% of the global population at some point in their life, assuming the male to female ratio is 1:1 (ie. equal) this would mean:

In London (population: 8,788,000) – 175,760 have alopecia areata (either active or in remission)
If half of them are women: 87,880 women have alopecia areata

This didn’t ring true,

I haven’t seen nearly 90,000 bald women in London, or nearly 90,000 with painted eyebrows, or nearly 90,000 without even the finest of hairs on their ears, arms etc.

So why are there so many AU people?!

he then found this stat:

“Not everyone loses all of the hair on the scalp or body. This happens to about 5 percent of people.”

Yusuf’s conclusion

I started to think, when things are good? do you think about anything else? no! you’re too busy enjoying yourself. It’s only when things are bad that people really need support, (and rightfully so).

It’s the echoes of those times, that you see online.

I hope I haven’t jinxed myself by writing this, I’m just trying to help, especially those newly diagnosed who are likely to find themselves on google like I was.

This condition is entirely unpredictable and I realise that one day I may lose all my hair too. If you’re a newbie and reading this first of all Welcome to the party! (it’s probably a guest list you never wanted to be on!) but also please remember that should I join those who lose all their hair I have become a statistical deviation and not the norm.

Here we go AGAIN! :(

I’ve been reading through posts on this blog. This is my twentieth post since I started in February 2013. You couldn’t exactly call me prolific. Apologies my posts have been few and far between.

There seems to be a pattern to my subject matter (aside from patchy hair loss). One time I post about how bad my hair is falling out – then my next is about regrowth – then I talk about loss and the following focuses on regrowth. This endless cycle of growth and loss with an upbeat message hammered in at the end has been my signature.

You can view them all in order here.

So is this one about loss or growth?

In my last post – I was yakking on and on about regrowth. I am still having regrowth – especially my chin and facial hair BUT – I also have lots and lots of new patches which I’m not too pleased about. So I guess this actually fits the pattern.

My facial hair regrowth

I grew out my beard (or what there is) over Xmas 2017 when I visited Iceland. As you can see from the picture (taken in the Blue Lagoon) my ‘beard’ is multicoloured and I only have regrowth in certain parts. The white hairs on my chin have been white for 4 years.

White Beard at the Blue Lagoon!

The patches on my head continue to piss me off

I have been panicking since August 2017 that ‘my hair was going’ and I was convinced I would be bald again by the time I turned 40. Well I turned 40 in December 2017 but I still had hair – the Iceland picture was taken just after my birthday in December.

My hair has thinned out considerably and there are patches creeping around all over the place. I keep asking my partner – “Do I need to shave again??” and I’m reassured by him – “Not yet”. I asked my hairdresser recently, who told me to “relax”. This was two weeks ago – since then – the holes have increased and started to join up. Have a look at my current hairline and tell me not to worry…

my ever disappearing hairline – April 2nd 2018

Think positive or think real?

My previous train of thought was – if you think and expect something -(and then obsess over it) you invite it. This belief is stronger when your hair has regrown and isn’t falling out. It gets harder and harder when your hair does start falling out again. As mine is now.

I don’t want to be negative or get lost in a depression like I did when my hair first fell out as I know it grew back and it might again. It doesn’t help when I see hair everywhere – on my desk, pillow, the bath, my car seat – everywhere! I can hide the spots by styling but again – the wind, rain and freak weather is once again my enemy and part of me wants to just own this shit and shave my head.

I am trying to latch onto the fact that new holes appeared (then disappeared/my hair grew back) in January 2017 – as I detailed here. This current period of loss may magically grow in like it did then. BUT my brain keeps saying “No it won’t – look at yourself” and the negative feelings continue to rise.

Even my bloody eyebrow – as you can see in the first image – also has a patch missing. FFS!!!

Why now?

I’m in a really stressful moment in my life – I have gone part time at work – headed back to do a full time masters degree and am generally always really busy and stressed. This may be having an effect on my hair – or it may not – WHO EVEN KNOWS ANYMORE!

I am still taking the LDN, hair goop, vitamins and all the rest but at the moment at least – none of them seem to be working. Maybe it’s just my time to shed and this is always going to happen. It may just be that I am SHITE at managing stress and this is the result. I graduate in October and work is ramping down soon – so – as ever – I will keep you updated and let you know whether this is pure stress or the result of something else!

When am I going to blog next?

I will shortly be posting blog updates which have been written by a couple of people I have met through writing this blog. They are going to tell their story so you can see how they coped and what they went through.

And if I do ‘the big shave’ again – I will record it and upload to the site.

Speak soon

Reece

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!

15253635_10155560724244778_834846904936723561_n

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.