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

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:

  1. His mum suffers from Autoimmune Thyroid
  2. He has psoriasis and now Alopecia Areata
  3. 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.

 

at the blue lagoon

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.

at the blue lagoon

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…

a man with alopecia

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.

patches of alopecia

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 with phytofol

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.

A zombie face with half the mouth missing

Symptomatic/Psychopathic. Zombie features.

What happens to you when you feel a bout of something coming on? What’s your tell? The reason you start to panic or brace yourself for the ensuing episode? Mine is the start of my zombie features – a period where I swing between bouts of obsessing over my dry skin and general mania.

The reason I’m asking is because I’ve been thinking about this a lot lately (surprise surprise).

It goes like this – I see a wee red patch of dry skin on my right hand (kind of like stigmata! There is nothing holy about my reaction). Once I notice the patch, a sense of dread courses through my body as I fight my way to the mirror to examine my scalp  – looking for signs of inflammation or crustiness. I am generally not happy until I find something, anything – YES. I am turning into a zombie  – I knew it.

I Zombie?

A zombie face with half the mouth missing

This – is how I imagine I look when fully symptomatic

The reason I relate my ‘symptomatic’ state to that of a zombie is because they both share similar physical features – such as:

  • Falling hair
  • Bleeding gums
  • Bad breath
  • White coating on the tongue
  • Dark circles under eyes
  • Red, chapped flaky skin

I know all of the above can also be signs of other stuff – an allergic reaction, an intolerance to dairy, wheat or countless other things or simply some sort of infection. I have thought and thought (and thought again) about all of these things – usually on a loop once I notice that bastard patch of skin appear on my right hand.

Mania

The internal reaction to my physical appearance becoming zombie like is usually mild to manic panic. Constant worry and questioning about WHY this is happening, WHAT is causing it and HOW can I stop it?

My obsession with spots are a recurring theme – maybe they are indeed the problem and I have brought all of this on myself. The constant questions my brain asks along these lines are also a clue that I am experiencing ‘an episode’, ‘being symptomatic’ or just having a generally shit time of it.

I find it hard to concentrate at work or in conversation – probably because my brain is busy asking the same stupid effing questions over and over.  I also find it hard to make decisions – what to wear, what to eat  – total brain fog.

How does noticing this help?

I’m unsure which came first and now which feeds what, but as soon as I see that little red patch or start to feel the other symptoms, feelings or manic thoughts – I try and remember it’s just thoughts, red patches or an inability to make a decision. I don’t let one add to the other and make me feel worse.

I think naming something, realising what’s happening and being prepared is useful – eventually. It takes time but every time one of these smaller things happens – I call it out for what it is – just something that’s happening which isn’t the end of the world.

As I now know what’s coming – just my feelings, just a patch of skin & just my own thoughts – they have less power over me and are gradually becoming easier to manage.

It’s happening again

Well my hair is officially coming out again – after months of denial – I popped into H&M today and unfortunately caught the three way view of the back, front and side of my head.

It’s looking holey, threadbare and generally a bit shit. Here are some photos taken this week:

Bald patch at the front - January 2017

Patch at the front – January 2017

image2

Back of the head January 2017

The back of my head January 2017

Back of the heed January 2017

 

I’ve still got a way to go before it gets as bad as it did the first time but a small part of my brain can’t stop worrying that THIS is going to happen again:

_DSC0192

My hair when I first shaved it off back in 2012 – look those eyebrows! Strong eyebrow game.

Partial loss all over

2012 – Patchy McPatcherson

Where else am I shedding?

My chest has a few patches  – though there is a lot of white hair growing back in each patch.

Is there any regrowth?

I think so -there are the white hairs mentioned above and  my moustache seems to be filling out – but I’ve thought that for a while now. I don’t actually  know. I will need to compare old and new pics and look a little closer.

Trying to keep my shit together

Being a natural pessimist and a bit of a worrier – my inner voice keeps repeating  the following type of statements on a nasty, insidious loop:

  • It’s all coming out AGAIN

  • It’s going to happen the same as last time

  • I’m going to have to wear hats all the time again

  • I wonder if it’s because I’m stressed

  • Why am I so stressed? If I wasn’t so stressed my hair might grow back

It’s pretty annoying to say the least but I am trying to be mindful and relax. I know from past experience that worrying, freaking out and being sad does NOTHING to improve mood, regrow hair or make you a nice person to be around.

It’s hard to maintain a chipper outlook when you wake up and your pillow looks like a barbershop floor or you’re stood in front of a stranger and wondering if they’re staring at your hair.

What am I doing differently?

I’m not taking any anti depressants or smoking cigarettes anymore. Though that annoying inner voice keeps reminding me – Your hair came back when you started smoking again last time.

I’m taking a drug as explained in my last post – called Low Dose Naltrexone (LDN). I have been taking it since 5 November 2016 and so far – NOTHING. I am paying for a private prescription and my hair seems to be getting worse. Apparently it takes a while to kick in. I’m giving it 6 months and then knocking it on the head – pun intended.

I’ve started wolfing down vitamins like they’re haribo – I’m currently taking:

  • Vitamin D
  • Turmeric
  • Vitamin C
  • Acidophilus

I am also taking 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.

hair tonic with phytofol

Hair Tonic

This Chinese medicine was given to me as a present on my recent holiday to Australia. I met up with a fellow AA sufferer – Johannes, who has been following my blog for a few years. We met up for dinner and drinks when I was in Melbourne in December. We chatted about lots – including AA coping strategies and different things we have tried to regrow hair.

Johannes and me

Me and Johannes

Johannes advice

It was amazing for me to meet Johannes. he was a very positive person and someone who I am glad now to call my friend. He gave me this piece of sage advice -which I am trying to reflect on whenever I get down:

Remember, yes AA while not life threatening, is certainly life altering but you are not your hair, my friend – You are so much more, and hair while of course aesthetically nice does not define you.
I think we could all learn a lot from the above quote. It’s very hard to shift that awful voice that sometimes submerges your waking thoughts.
Instead of listening to the negative internal monologue – actually listen to another objective human point of view – preferably someone who knows you or someone you trust.
Actually listen to what they say.

LDN and Alopecia

No I’m not talking about the capital of the UK or quoting a Lily Allen song, I’m on about Low Dose Naltrexone (LDN) – a drug that I’ve just started taking.

Apparently naltrexone, in a low dose (the LD in the LDN), can normalise the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders. A lot to live up to.

The drugs

Naltrexone’s normal use is for treating addiction to opiate drugs such as heroin or morphine. The dose used for this purpose is usually between 50 and 300mg daily. The one I am taking is way, way lower. I am starting at 1mg and going up steadily to a max of 4.5 mg.

You need to get it on private prescription which is what I have done. For  more info on LDN – go to the LDN research trust.

The alopecia

Well – it’s back with a vengeance on my chest.

There has also been a general thinning on the top of my head and a few small patches have been threatening to make a more formal appearance for ages now.

Logging my results

I started taking it on 5 November 2016 and started on a 1mg dose of the liquid. After a few weeks I am now up to 4.5.

I am off to Australia today for 5 weeks so will try and blog while I am there and keep you up to date with my progress.

Cheers

R.

 

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.

alopecia areata patches on my chest

Patchy Chest

My scalp

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:

half moustache regrowth from alopecia

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 close up

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.

 

 

Out damn spot. . .

Howdy folks

Can I start by saying that – the reason I started this blog was to:

“post pictures and share stories of how I’m getting on with alopecia areata as I want to be a positive voice for a not-so-positive type of hair loss”.

I was sick of hearing horror stories and reading depressed people on blogs who (in my mind at the time) were obsessed with the reason for their alopecia.  I thought that their quest was an all-consuming, doomed crusade.

The above quote was my mission statement when I began the blog – but I failed to realise I actually was (and to an extent still am) one of those obsessed people – trying to work out ‘Why me’?!

What’s happened over the course of the few years I’ve been blogging is that I’ve started to dread these confessional moments – so much so that recent posts have been few and far between. I didn’t want to jinx the fact my hair was coming back by talking about it – and I didn’t want to sound like a whiny obsessive.

BUT – here I am -owning the fact that I am a whiny obsessive – at times. And that’s cool – I mean – my hair is coming out in patches across my head for f*cks sake! So I’m going to cut myself some slack, stop obsessing about obsession and get you up to speed.

I wrote the following blog post yesterday and I talk about my newest obsession – SPOTS. . .

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Last time I explained that the patches are peeking through again. What I failed to mention was that this time they’ve been accompanied by some other weird affliction – hives/spots/urticaria whatever you wanna call it.

Spot the difference

This started in January 2016 when I noticed a few red spots on my hand. I brushed them off as just wee spots or maybe contact dermatitis. However – over the past few months  – as my hair has been falling – the spots/hives have been coming back and spreading all over my body with an almost daily regularity.

 

This isn’t anything new – I have always had seasonal bouts of skin flare ups – as most folk do – prickly heat/heat rash and a wee bit of eczema occasionally. However – as this has coincided with my second bout of hair loss – my frantic mind overtook my sensible one and I started becoming reacquainted with the manic Google search. Worst mistake ever.

In-between protracted google searching and obsessing over the placement of dots – I kept badgering my doctor to get me referred to a dermatologist for both my alopecia and this new skin issue.

I finally got an appointment last week at the dermatologist – when I arrived I had NO spots – typical. I did have the above photos on my phone – which I showed her. She diagnosed Cholinergic Urticaria. So that’s a double whammy of alopecia areata and cholinergic urticaria.

Why is my immune system such a twat?

Cholin-er-what-now?

Sometimes referred to as heat bumps, as the rash appears as very small – surrounded by bright red flares.

What causes cholinergic urticaria?

A rise in core body temperature resulting in sweating causes the rash in cholinergic urticaria. Common triggers can include:

  • Exercise
  • Hot baths/showers
  • Emotional stress

Argh – stress rears it’s ugly head again as a potential trigger 😦

Obviously as my alopecia’s back & this is happening – I’m now stressing out more about both of the above – a vicious cycle of anxiety is occurring – and whirring. My already strung out brain is wondering if I have literally brought all of this upon myself – with the aforementioned ’emotional stress’.

So what am I going to do?

Firstly I’m going to deffo STOP obsessing and googling ‘hives‘, ‘red dots on skin‘, ‘urticaria‘ and all the rest every five frigging minutes – we all know where frantic googles lead…usually to a diagnosis of cancer or some other terminal, tropical, incurable disease.

I’m going to try to chill the f*ck out – on a daily basis – this applies both at home and work. Easier said than done but I have a few ideas:

How I’m going to chill:

  1. I’m going to try to start a daily practise of mindfulness  – even for just five minutes – every single day
  2. I’m going to start going back to Bikram Yoga – I went for a few months last year and loved it. I haven’t been for a while and am thinking it might help
  3. I’m going to keep exercising 3 or 4 times a week
  4. I am going to try and write more on this blog
  5. This is the hardest one – I’m going to try and cut down on the alcohol and processed food. I generally eat a healthy, vegetable and protein heavy diet but I do like the regular beer/wine/gin.

 

So what am I going to do if nothing works?

If, after 3 months (September 2016) none of the above help my current situation (spots and patches) – I’m tempted to go back on anti-anxiety medication – to stop the constant whirring thoughts and chatter that occupy my brain during most of my waking and worrying hours. Thoughts that are either taken up by spots or hair loss. What an exciting combo – spot and patch sound like a pair of low-rent strippers.

I’m having a daily battle with the should I – shouldn’t I. Maybe the anti anxiety medication will stop the hives and/or alopecia – or just stop me worrying about both.

Here’s hoping that in 3 months  – I’ve calmed down and either gotten used to being spotty and patchy – or they have cleared up.

I will, as ever  – keep you posted. Give me a shout if you want to chat or if you have any advice on the above.

Cheers

Reece

 

 

Hello Darkness, my old friend…The return of Alopecia and departure of hair (again).

No, this post isn’t an homage to Simon & Garfunkel, as lovely as they are. I’m merely borrowing lyrics to highlight my current mood. It’s getting darker – which is the inverse of my hair – which is getting lighter. By lighter I mean patchier. By patchier – I mean – the always lurking alopecia areata is making a comeback 😦

One year on

It’s been precisely a year since I started to grow my hair back in. I shouldn’t whine – I had a full head of regrowth for summer (no sweaty cap or burnt scalp for me) and for my sister’s wedding. In the back of my mind I always knew it would come back (or go – whichever way you look at it).

When people asked me or saw an old photo of me and were puzzled – I’d explain that I have Alopecia – not had. I would never trust them when they said “Really, I would never know”. Such is my paranoia when it comes my hair.

IMG_5670

Paris, March 2016

Never really went away

I never had full regrowth, below is a list of the stuff that didn’t properly grow back when my luscious mane did:

  • My eyebrows never fully grew back to the Brooke Shields/Cara Delevigne caterpillars that they were  – but at least I had some – even if it did look like I’d over-plucked
  • A patch on my chest and trunk – which started when my head hair came back.
  • I had one patch of (no) hair – above a newly returned grey spot which never came back in (see below)

grey bit

 

What am I going to do this time?

You may remember last time I tried a few things? This time I don’t want to radically overhaul my diet (as I’ve been steadily eating healthier foods and upping my fitness levels for the past few months). I gave up smoking – in January and am drinking less alcohol than I ever have.

I seriously believe that my alopecia is either:

  • a cyclical thing  – that I have no control over
  • it’s triggered by stress – which I do have control over
  • both

Point is, if I remove or react to stress better, it’s a win-win. I know how mini stressful episodes affect me – I get a racing mind, laboured breath and a tightness of  muscle. Whether these mini episodes have contributed to my alopecia or not – I don’t want them. So…

This time, the only things I’m going to do are:

  • Try (and I do mean try really hard) to calm the f*ck down
  • Try not to stare at the ever increasing patches of pink skin
  • Remember to breathe – seriously, I’m making a conscious effort to take big long lung-bucket-fulls of breath – it’s not only good for the soul – focussing on my breath will stop my mind racing about impending baldness

I just need to remember that I’ve been through all this shit before. The ‘worst’ that can happen is actually more of an inconvenience – having to shave my head, facial hair and patchy eyebrows off on a daily basis. It isn’t life threatening and lots of people are going through much worse than me.

I’m away to snort some oxygen and (not) look at my hair in the mirror!

 

 

 

2016 #Alopecia Update

I’m starting this post with an apology – sorry for not posting to all those people asking for an update. The reason I started this blog was to give people regular information and to keep track real time of what was happening with my alopecia. I didn’t keep my end of the bargain but here’s an update  – with a possible explanation.

The reason I haven’t blogged as much as I promised

Aside from being lazy, I haven’t updated as much because – my hair’s been growing back really well during 2015 and I didn’t want to go back to my obsessive state by talking – or even thinking about it.

This may sound like an excuse (and it is) but every time I thought “shit I need to write a blog post” – another wee voice in the back of my (now hairy) head said – “nah – just enjoy the full head of hair you have – stop fretting”.

As I said at the start of this post – sorry for that. Here’s the back of my head taken today (January 4th) – pretty much covered – apart from the usual thinning a 38 year old can expect.

DSC_0093

Back of my head January 2016

The hair on my head has almost all returned (you can see where it is thinner) – apart from one spot above my right ear, which is covered in grey/white hair :

grey bit

The shot above showing the grey patch above my right ear is light years away from the photo below – taken almost 3 years ago in February 2013.

Alopecia hair February 2013

Feb 2013

Facial Hair

This has remained pretty static and hasn’t fully returned – here’s a face shot from today -as you can see most of my eyebrows and eyelashes are back but my moustache hasn’t fully returned (no Movember for me) and you can see that my cheeks and chin STILL have the white hairs – which haven’t as yet gone ‘back to black’.

DSC_0090

Again – though there isn’t full regrowth – it is hugely improved from July 2013 (below) when I had to razor my head, face and eyebrows everyday.

Alopecia hair July 2013

July 2013

What have I been doing differently?

Nothing – as I’ve said a few times – and to people who comment on various posts or ask me questions – I haven’t done anything drastic or different. I have stopped:

  • obsessing
  • staring at the patches
  • worrying

I’m unsure if this is the reason for regrowth or just the end of this cycle of hair loss – but learning to shift focus from worry and obsession of alopecia has worked for me physically and emotionally.

Unfortunately the flip side of this approach means I have neglected the duties of this blog. 

I will try my best to update much more frequently and please let me know if you have any questions, comments or anything you want me to blog about.

Cheers and Happy 2016!

august 2015

 

Reece