Sadly Not Unique


A black heart is a person living in the dark

Since Girl in the Dark was published, I’ve had letters and emails from people all over the world.

Some are from people leading normal lives, who simply love the book – thank you.

Some are from people who’ve experienced chronic illness, who relate to the frustration, isolation, wild joy at tiny improvements, utter devastation at relapses, absurdity and guilt.

Some come from people with other light sensitivity conditions, less absolute than my own.

A few are from people who are living in the dark.

These dark contacts give me the strangest mix of sensations: an overwhelming sense of kinship and fellow feeling, the primal comfort of not having been alone; a strong desire to stick two fingers up at those who said I must be imagining it, because such extreme sensitivity could not exist; deep tearing sadness that others are having to live in my particular intimate hell.

There are different ways in, and, let us hope, different ways out. I am so lucky I finally found mine.

Send a thought to the others, now and then, as you wander through the world.

 

More about Food

pearVarious people have been asking about the low-histamine diet. Unfortunately, there’s a lot of contradictory information on the web –  I’ve seen the same foods on a “do not eat” list on one site and a “totally ok” list on others; googling can send you quietly mad.  So I thought I’d share some info, based on my own reading and experience.

NB: This blog is not a substitute for professional medical services. Consult a competent professional on health matters.

What is histamine?
     Histamine has many useful functions in the body.  It is released from mast cells as part of a normal immune system response.  When someone has an allergy, e.g. to pollen, it is released in response to a normally harmless substance, causing unpleasant symptoms – hence ‘anti-histamine’ pills.  Histamine also occurs in foods to varying degrees.  Some foods are naturally high in histamine, such as tomatoes.  Others are high because of the way they have been produced.  Ageing, preserving, smoking, fermenting, pickling and processing all increase the histamine content of food, so for example blue cheese, smoked fish, sauerkraut, alcohol and tinned food are all high.  Some foods, additives and medications aren’t high in themselves, but are “histamine liberators” (encourage the body to release histamine) and some are “enzyme blockers” – i.e. reduce the body’s normal capacity to get rid of histamine.
In most people, histamine gets rapidly broken down by enzymes: DAO (histamine in the gut) and MAO-b and HNMT (intra-cellular histamine).  But people with low activity in these enzymes can end up with an imbalance – too much accumulated histamine, and not enough capacity for metabolising it.
Too much histamine can cause various symptoms including headaches, diarrhoea, asthma, runny nose and arrhythmia, plus a whole range of skin symptoms.  Often these symptoms are attributed to food allergies or intolerances which then prove frustratingly hard to manage.  The really interesting thing in my case was that reducing histamine levels reduced my sensitivity to an entirely separate and specific trigger – i.e. light.  I’ve also become less sensitive to other things that used to make me ill, such as dust and certain foods.

Low-histamine diet
Unlike most diets, this one has two elements:
1 What foods to eat – the best list I found is on the Swiss Community of Interest for Histamine Intolerance site
2 How food should be prepared and stored – the best guide to this aspect is a little book called “What HIT me? Living with histamine intolerance” by Genny Masterman.  It’s really worth investing in.  It contains lots of accessible scientific background; plus key tips for managing the diet, including “Learn to cook” and “Your fridge/freezer is your friend!”  Because yes… when you can’t open a tin of beans, snack on a packet of crisps or get a ready meal out of the freezer, you really do have to get cooking…!
I still have flashbacks to my early months on an extremely strict version of the diet.  They seemed to consist mostly of standing amid perpetual clouds of water vapour in the gloom of a blind-screened kitchen as I boiled frozen sweetcorn and steamed frozen fish.
But it’s all been worth it.  And as I’ve got better, I’ve been able to allow myself more leeway.  I eat chocolate now and again.  I’ve even experimented with low-histamine wine, available from a company in Austria called Eller Finest Selections.  (There seems to be much more awareness of histamine intolerance in Germany, Austria and Switzerland compared to the Anglosphere.)
The wine tasted pretty much like normal wine.  I went pink in the face, waved my arms about and started talking very fast about politics.  So one concludes that the effects are pretty normal too.

 

 

Holiday!

I’ve just been on holiday. In our caravan.  In the part of Hampshire where the South Downs is just beginning to roll.  In a week of crazy totally unseasonal September heat (30° on some of the days). Under glorious blue skies and strong sun.

We saw the majestic pines on Lepe beach, the arboretum and herbaceous borders at Exbury,  strolled round the property-lust-inducing village of Chawton and visited the museum in Jane Austen’s house.  We went on a steam train on the Watercress line from Alton to Alresford, had fish and chips in a pub, watched ducks float serenely on the beautifully clear chalk stream.

I wore a long-sleeved jacket and a below-the-knee skirt and a large-brimmed hat and put my UV-protective but nonetheless excitingly lace-trimmed parasol up when the sun was strong and direct.  But I had sandals on my feet, and no additional layers.

2010 was the last year I went on holiday.  During one of my better periods, we visited the same caravan site, a small square field bordered by tall trees.  I knew the sunrise and sunset times by heart; we had a run of early starts and evening strolls, and for the rest of the time I stayed in the van and Pete went off on his own.

This time we dozed luxuriously through the dawn, watched dusk from the caravan windows and went on day trips like normal people.

At last I’m seeing the world in its true colours.  Someone has taken away my box of subtle pastels and given me a primary school paint set.
Red orange yellow green blue purple
Rowan dahlia sunflower grass sky blackberry
Wham!  Kapow!  I’m still reeling.
Hooray for low-histamine diets, histamine-reducing probiotics, and dna-test-targeted supplements.
Hooray for my wonderful J, who gave me back every last leaf.

The Pain of Incredulity

number-4I am on the phone, talking to one of my telephone friends (this one has fibromyalgia and an autoimmune disorder and she lives in South West London). She is describing how badly she is affected when aircraft fly low over the house; it is getting so bad she may have to move, with all the disruption that entails.

And I feel it starting.  Deep down in the centre of my brain: the embryonic stirring of a question mark, a tiny curl of doubt.

Aircraft? Really? Surely things can’t be that bad….  It’s a natural human reaction.  Then I remember my own experience. I am ashamed, and I immediately suppress the thought.

For so many years, my situation was so rare, extreme and unusual that when I described it to people, often in an attempt to seek help, the response was usually incredulity.  Somebody once said that three of the most powerful words in the language are “I believe you.”  Their implied opposite is no less powerful.  Repeated over and over again, the incredulity became a sort of psychic flaying, a periodic acid bath on top of the agonising burning of my skin.

I learnt all sorts of things during my years in the dark.  I learnt how to locate and identify clothes and talking books by touch; how to find ecstatic joy in being well enough to clean the loo; how to sift, from a day of crushing boredom, a tiny nugget that might make my husband laugh.

The biggest lesson of all has been the importance of listening – really listening – to what people are telling me; keeping my mind open, no matter how what they are saying differs from my own experience of life; resisting the temptation to pull up the shutters of scepticism and think “this cannot be”; remembering that we understand only one small part of this wonderful, terrible world.

I needed this so much.  And I’m just immeasurably, immeasurably grateful that the people closest to me gave it, absolutely, freely and without question.

I know many others are not so lucky.

Getting Better – The Science Part (2)

anna-lyndsey_steps2One morning in June 2016, we get in the car in Hampshire and Pete drives up the motorway towards central London. The journey takes 2 ½ hours – most of that time spent crawling in traffic from the Hammersmith flyover.  We drive slowly along the river in intermittent rain and I squeak with excitement as I spot landmarks from my previous life – the Tate Gallery, Millbank Tower, the Palace of Westminster, Hungerford Bridge – and marvel at the cranes and new apartment blocks now canyoning the Thames.  It is a significant day in many respects: 23 June.  We spot the Labour Remain Battle Bus, and ‘Independence Day’ posters.
Finally, I’m in the hospital and I’m talking to the consultant I haven’t seen for 10 years.
He is most interested in the histamine approach that has led to me being well enough to come back to the hospital.  In his view my extreme skin burning in response to light with no visible sign would be classified as a type of cutaneous dysesthesia, a group of conditions characterised by very severe neuropathic pain sensations (including intense burning, itching and pain) – i.e. nerves responding inappropriately in a variety of ways.  In some people this happens without particular triggers, in others there are triggers such as light, heat or touch.  This is a developing area and this group of disorders is not yet fully understood; the current conventional treatment for such cases would be a drug such as Gabapentin, which is prescribed for neuropathic pain, and referral to a Pain Clinic.  Given the success I’ve had, and the continuing upward trend, we agree it makes sense for me to continue doing what I have been doing, but bear the alternative approach in mind if things should become worse again.
Now I know, however, that I’m not the only burning person out there; that, actually, we are acknowledged by orthodox medicine, if not yet fully understood; that we have a name.

The Difference that Day Makes

20160618-_09_poppyIn a corner of our garden, just where the conservatory joins the brick wall of the house, a mysterious plant has taken root. It has elongated, slightly furry leaves that lie flat close to the ground, and tall slender stems, about 12 inches high, producing multiple branching flower heads.  Despite its elegant, aspirational appearance, it is probably a weed.  But nothing else seems to want to grow in that corner, even the lawn, so we let the plant take over.  It pops up every summer, in greater and greater profusion.

For many years, if I was in one of my better periods, I saw the garden only at dusk.  I would look at the mysterious plant and think vaguely, “Those flowers will be interesting to see, when they finally come out.”  But they never seemed to, or I never noticed, and they turned into fluffy spherical seed heads without revealing any more.

This year, my first proper summer, the mystery has been solved.  I went out into the garden on a morning in June, and there were the flowers – bright orange and hairy, like multiple miniature dandelions.  And, like dandelions, of course, they close up, neatly and efficiently, as the sun begins to set.  As do the daisies that speckle the grass.  And the big silky poppies Pete planted in the border for photographic purposes.  And the small wild yellow poppies that have seeded themselves about the place.  And the gazanias.  Suddenly, going out in the daytime, I’m seeing all these discreet and bashful blooms splayed out shamelessly in the sun, being visited by pinstriped hoverflies and big fat bees.

Then, in July and August, at the high point of summer, I start seeing butterflies.  I’m utterly entranced, trying to follow with my eyes their crazy, non-rigorous, scatterbrained flight, picking out their colours and details as they tantalise among the flowers.

I’ve come across moths, of course, during my crepuscular phases, half seen and mysterious movements in the dim half-light.  But butterflies, supremely, are creatures of sunshine and the warmth of the day; I haven’t laid eyes on one for ten years.

They become my private symbol for this summer of renewal, for lightness and freedom after close and dark confinement, for the recovery of those thousands of pointless and trivial everyday choices which are none the less such a joy.

Café, with People

20131122-25nforgladeWe pick a dull morning in November 2015 for my first go at a café. Pete and I drive to the New Forest, to a wildlife park set among tall trees.  We arrive early, at 12pm, so there won’t be many people about, and we choose a table out of the direct glare of the fluorescent lights.

Pete goes to the counter to order our food. I have a baked potato with salad, and peppermint tea.  (Some things, I find, don’t change – those small metal flip-top teapots STILL pour water all over the table whenever you fill your cup).

The place fills up, and I stare and stare as I eat. I’m fascinated by people’s faces and smiles, their different sizes and shapes, their gestures and clothes.  I eagerly listen in on conversations in person and on phones. I even spot my first hipster beard, a phenomenon that, up til now, I have only read about in magazines.  It’s a fine example, black, silky and luxuriant, worn beneath large-framed spectacles in cherry red.

For so long I’ve had real people only in controlled doses, people I know, in ones or twos, very rarely more, and in my house. New companions joined me in the dark, as I listened endlessly to talking books, and for several intense hours I would follow their trials and tribulations, look on at significant moments of their lives.  But these were phantasmal beings, formed from the ectoplasm of words, edited, pruned, consistent, their very idiosyncrasies designed to facilitate the plot.

Real people are wild and weird and wonderful. They are hairy and bulging and scrawny and toned.  They discuss obscure matters with ferocious intensity but a maddening lack of specifics.  I feast on them as I eat my potato – I’ve been starved too long.

I still need to be prudent about the light, so we don’t hang around. After 20 minutes we get up to go – and I have the exquisite pleasure of discovering that not only did I not have to cook this meal, but I can leave the remains on the table, for somebody else to clear up.

 

Getting Better: The Science Part (1)

Here’s hstairs_santorin_portow the miracle happened. It’s such a totally cool miracle, it’s got scientific references…(see end of post)
1. J, wife of friend and newly trained nutritional therapist, persuades sceptical, grumpy Anna (who is pretty ill at this point) to write out a detailed medical history, describe all the treatments she’s tried, muster the results of all the tests she’s paid for over the years, list all the pills she’s taking, and keep a food diary.
2. Anna does all this, thinking: “Well, you can have a go, my dear, but I’ll eat my hat if you get anywhere.”
3. J reviews case and researches in medical and scientific journals. Comes up with hypothesis: massive build-up of histamine plus rampant histamine intolerance. She sends Anna some interesting papers including:Joneja and Carmona-Silva, Outcome of a Histamine-restricted Diet Based on Chart Audit, Journal of Nutritional and Environmental Medicine (2001) ll, 249-262. (People with various skin conditions whose symptoms had resisted previous treatment improved on low histamine-diet).

Oksarharju et al, Probiotic Lactobacillus rhamnosus downregulates FCERS and HRH4 expression in human mast cells, World Journal of Gastroenterology 2011, Feb 14; 17(6); 750-759. (Certain probiotic bacteria might diminish mast cell allergy-related activation.)

Histamine potential of foods and additives, Schweitzerische Interessengemeinschaft Histamin-Intoleranz (SIGHI),http://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

4. Anna, who’s already noticed that foods like sauerkraut and smoked salmon make her worse, goes on a strict low histamine diet, avoiding aged, preserved, canned and processed foods, plus specific foods like tomatoes which are naturally high in histamine and/or provoke the release of histamine by the body.Light sensitivity improves slightly.
5.Anna swaps standard probiotic for probiotics which actively increase DAO – histamine-reducing enzyme – in the gut(1)(2). Starts with Lactobacillus rhamnosus – light sensitivity improves. Adds in Bifidobacterium infantis – light sensitivity improves more.  Adds in Lactobacillus salivarius – light sensitivity improves further (probiotic powders from http://www.metabolics.com).
6.Essential Fatty Acid blood test shows deficiency in delta-6-desaturase(3), the enzyme needed to convert linoleic acid to gamma-linoleic acid (GLA). Anna takes borage oil which supplements GLA directly. Skin improves more.
7.DNA profile shows gene mutations(4)  suggesting Anna has problems making a compound called SAMe (5) (part of the methylation cycle), necessary to degrade intracellular histamine(6). Anna eats more choline-rich foods(7) , takes hydroxy B12(8)  and phosphatidyl choline supplements which all support SAMe production(9).  Light sensitivity improves further.
8.Second, more comprehensive DNA profile (from https://www.23andme.com) shows mutations on yet more genes involved in extracellular histamine degradation(10), confirming importance of assisting key parts of the methylation cycle to compensate. Anna also has mutations (on MAO A genes) that may interfere with degradation of biogenic amines, histamine being one of these. Anna starts B2 supplements to support MAO mutations.Light sensitivity improves further.

In June 2016, Anna, wearing a large hat and under a tree, sits in the garden on a sunny afternoon, FOR THE FIRST TIME IN TEN YEARS.


References

  1. Kukkonen K, Savilahti E, Haahtela T, Juntunen-Backman K, Korpela R, Poussa T,Tuure T, Kuitunen M (2007) Probiotics and prebiotic galacto-oligosaccharides in the prevention of allergic diseases: a randomised double-blind placebo-controlled trial. Journal of Allergy and Clinical Immunology 119:192-8
  2. Mizuguchi D, Das H, Matsushita AK, Maeyama C, Umehara K, Ohtoshi T, Kojima J, Nishida K,Takahashi K,Fukui, H (2008). Suppression of histamine signaling by probiotic Lac-B: a possiblemechanism of its anti-allergic effect. Journal of Pharmacological Sciences, 107:159-166.
  3. Tollesson A, Frithz A, Berg A, Karlman G (1993) Essential fatty acids in infantile seborrheic dermatitis. Journal of the American Academy of Dermatology, 28: 957-961.
  4. Preuss CV, Wood TC, Szumlanski CL, Raftogianis RB, Otterness DM, Girard B, Scott MC,Weinshilboum RM (1998) Human histamine n-methyltransferase pharmacogenetics: common genetic polymorphisms that alter activity. Molecular Pharmacology, 53:708-17.
  5. Barbosa PR, Stabler SP, Machado ALK, Braga RC, Hirata RDC, Hirata MH, Sampaio-Neto LF, Allen RH, Guerra-Shinohara EM (2007) Association between decreased vitamin levels and MTHFR, MTR and MTRR gene polymorphisms as determinants for elevated total homocysteine concentrations in pregnant women. European Journal of Clinical Nutrition, 62:1010–1021.
  6. Lewis CA (2015) Enteroimmunology: a guide to the prevention and treatment of chronic inflammatory disease. Carrabelle, Florida: Psy Press.
  7. McGuire M, Beerman KA (2015) 3rd Edn. Nutritional sciences:from fundamentals to food. Belmont, California: Wadsworth, Cengage Learning.
  8. Bolander-Gouaille C (2002) 2nd Edn. Focus on homocysteine and the vitamins involved in its metabolism: France:Springer.
  9. Zeisel SH (2006) Choline: Critical role during fetal development and dietary requirements in adults. Annual Review of Nutrition, 26: 229-250.
  10. Mitchell ES, Conus N, Kaput J (2014) B vitamin polymorphisms and behavior: Evidence of associations with neurodevelopment, depression, schizophrenia, bipolar disorder and cognitive decline. Neuroscience & Biobehavioral Reviews, 47: 307–320.

Back to the light

I was pretty normal until my early thirties. Then my skin gradually became excruciatingly sensitive to light.  The condition grew so extreme that I had to spend most of my time in a totally blacked-out room.

Over the years I’ve tried everything to get out of the dark: acupuncture, meditation, hypnotherapy; spiritual healing, strange diets, internet pills; private doctors who could be persuaded to offer a telephone consultation or paid to come to the house.  Sometimes I did manage periods of improvement when I went for walks, Dracula-fashion, at dawn and dusk.  But these patches of hope were fragile and never sustained.  Lying in the dark with my skin on fire I often planned my suicide.

I survived because of the love of my partner and my family.  Because of talking books – I’ve listened to hundreds – that took me to different worlds.  Because of unexpected telephone friendships with other people living with chronic illness.  And because at my absolute lowest ebb, desperate to find something to do in the dark, I started to write about my experience [Girl in the Dark, published by Bloomsbury 2015]. [In USA, published by Penguin Random House]

Then something amazing happened.

The wife of a friend trained as a nutritional therapist.

She persuaded me to be her client number 2.

She looked at my whole case from first principles.

And she found the answer!

It’s not an overnight cure – I’m still very far from normal – but a steady, sustained, continuing improvement, going far beyond anything I’d dared to hope.

I’m coming back to light, to life and to the world, after so long alone in the dark.  Each new step is intense and surprising and crazy and beautiful.  That’s what I want to share in this blog.

 

 

Sticked