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?
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:
- 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:
- I’m going to try to start a daily practise of mindfulness – even for just five minutes – every single day
- 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
- I’m going to keep exercising 3 or 4 times a week
- I am going to try and write more on this blog
- 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.
Hi Reece. As always I ‘enjoy’ reading your blogs. You always nail exactly how I feel and react. Alopecia seems on paper such a small thing to have to worry about especially when there are so many other illnesses, yet to me it is such a big thing. I cope much better now, but alopecia is constantly always there, even if it’s just a whisper it’s still there and I hate it.
Keep us all posted, and as always take care.
Hey Neil – thanks for this – how is yours doing? Do you still need to protect your eyes when working or have you got eyelashes now? Hope yours has come back?
Thank you for sharing your struggles. I suffer from Alopecia at the age of 51 and witness my son, who is 20 suffering the same thing. His started his Senior year in high school. Your both an encouragement to me. It’s a daily reminder that it’s not what you look like, but who you are that counts. People are impressed by your strengths but connected by one’s struggles. Sharing helps. Hang in there and do whatever it takes to keep your attitude positive. We are pulling for you.
It’s really nice to hear that and I especially like “People are impressed by your strengths but connected by one’s struggles”. That will get me through when times get tough! Hope your son is learning acceptance from you. At least he will know that family and friends don’t give a crap what your hair looks like – and that is a fear a lot of people with alopecia have.
Follow blog as was only success story of regrowth i could find on net. Sorry to hear its starting again. Ive had AA with ophiosis 3 years now with no improvement. Been through it all myself but never tried the healthy diet and no alcohol thing, though not concinved it would work for me, i do like a glass of vino. Hope things improve for you, take care and hope your destressing techniques work, try jogging/running works for me, al
I didn’t say NO alcohol 🙂 Just trying to cut down and be ‘healthier in my outlook’ = everything in moderation and all that jazz. I have never heard of ophiosis before – I googled it – that must be tough? I will let you know how I get on with the healthy diet and if it works – may not be a bad shout 🙂
I’m so glad I found this web site!
This has been happening to me, with the same exact progression — it started with two bald patches on either side of my chin, which grew and joined up with other bald patches that appeared later. Now I have only a little hair on my face left, and I’m not sure what’s next…
I was just wondering: I’m trying to figure out what caused this. It started pretty soon after I got dental implants — have you heard about dental implants causing this before? I also took some antibiotics around the same time.
Anyway, thanks for making this web site!
Hi Pete, I haven’t heard about dental implants causing this but I have spoken to my dentist as part of my initial line of questioning. He said he didn’t think it was connected. Yours may well be as Alopecia can be triggered by trauma, either physical or emotional – so it’s a possibility that maybe triggered it. Trying to find an answer is pretty much impossible. I have been trying for a long time and am now resigned to the fact I will never know. I take an “It is what it is mentality” and it works most of the time – and I am pretty sure that my laid back attitude helped it come back recently. Keep me informed of your progress. Have you been to see your doctor or a dermatologist?
Thanks again for your comment.
Yeah, I recently saw both a GP and a dermatologist. They confirmed that it’s Alopecia, and mentioned shots as a possibility, but I’ll probably hold off on that, for now at least. They also both agree that the dental implants probably didn’t cause it (but it’s possible there’s a connection no one’s discovered yet).
Anyway, thanks for the reply! And thanks again for setting up such a great web site.