hair loss

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.
20180905_210144
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.
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!

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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 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.

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. . .

_________________________________________________________________

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!