Tag Archives: anaphylaxis

Mast Cell Triggers

MCAS is a very individual disease.  We will all react to different things and to differing degrees  but it’s still comforting to read about other people’s experience of mast cell disease and to know we’re not alone.

My reactions take on several forms:

  • Cutaneous: flushing, itching, hives, blisters, rashes.
  • Brain: migraines, brain fog, seizures, memory problems, altered consciousness, speech problems.
  • Gut: nausea, retching, oesophageal spasms, increased urination, constipation, diarrhea, gut pain and cramping.
  • Ocular-nasal: sneezing, stuffiness, runny nose, nasal and eye itching, eye redness & watering, eye pain and soreness, light sensitivity.
  • Cardio-vascular: palpitations, chest pain, breathing problems, blood pressure rises and falls, vertigo, dysautonomia.
  • Systemic: fatigue, weakness, widespread non-specific pain, feeling fluey, muscle spasms, pins & needles, fight/flight, pacing, anxiety, feelings of doom, insomnia.

I can either suffer from the symptoms of one these categories on their own (eg. birch pollen season gives me hayfever but little else), or in combination with other categories, for example drug reactions give me just about every mast cell symptom known to man. My reactions have also changed significantly over my life-time.  As a child I had flushing, bowel problems and fatigue but nothing so out of the ordinary that it wasn’t just put down to being normal!  As a teenager, once my hormones had kicked in, I added chronic headaches, aura migraines, skin itching and one drug reaction to the mix.  By the time I was in my mid-thirties I also had widespread pain, increased urination, oesophageal spasms, severe M.E., severe insomnia, chronic nausea and several drug reactions.  And then when I hit my early forties I became almost totally drug allergic, developed food reactions, Histamine Intolerance, hives, hayfever, my hEDS went bonkers and I peed so much I honestly thought my kidneys would pack up!

Here is a list of the things which currently cause my mast cells to behave badly:-

1. Emotions

Emotions are one of my biggest triggers, but the reaction is mild.  Being excited brings on a flush, makes my skin itchy and sometimes brings me out in a rash.  Being unhappy,   particularly if I’ve been crying, does the same but also makes me feel fluey and wiped out afterwards.  Arguments are to be avoided at all costs as they always involve not only flushing but also rashes and/or hives and make me hugely brain fogged and exhausted.  This is the rash which appeared on my tummy after someone was bitchy to me on a Schnauzer Forum!

Chronic stress, however, is a different kettle of fish.  Eventually I will break out in hives, start reacting to foods, develop insomnia, have to get up in the night to pee (sometimes several times), my already poor memory goes to hell on a hand-cart and eventually I will end up bedridden, fluey and exhausted.  This is why I need a quiet, structured life with as few surprises as possible.

2. Drugs

I am one of the most drug allergic people I know.  From herbs to supplements, painkillers to steroids, anti-histamines to anti-depressants, sedatives to anti-emetics my mast cells reject them all.  I have an ocular-gyric crisis to anti-nausea drugs like Stematil, and Grade III anaphylaxis to most of the others (there is currently no universal grading system for anaphylactic reactions but one of the most common is the Ring & Messmer scale which you can see on the Mast Attack site).  Here is my facial flushing after a drug reaction:

Photo of mast cell induced flushing

Unfortunately the reaction doesn’t stop when the drug is out of my system.  Mast cell activation can perpetuate mast cell activation and for me the whole thing goes round and round in circles until something eventually breaks the cycle.  My longest reaction has been 3 weeks until my heart was so poorly from the constant palpitations I was blue lighted to hospital with a suspected heart attack.

My drug reactions can also make me ill for months afterwards and so weak I’m bedridden.  Needless to say I don’t take any drugs, herbs or supplements unless I am so desperate that being potentially bedridden for the next six months is worth it!

3. Hormones

Entering peri-menopause is what triggered my MCAS to go from mild to life-threateningly severe.  I’m convinced I was born with MCAS just like I was born with hEDS, but apart from my increasing drug reactions and almost daily flushing it didn’t become really serious until I was 44 and my hormones started to fluctuate.  I started reacting to foods, which I’d never done before, developed hay fever, hives, started peeing during the night and my migraines went off the charts.  I also stopped tolerating any medication, even things I’d taken for years without a problem.

I’m unfortunately still having regular periods and in the week leading up to The Curse I can have hives, itchy skin, rashes, nausea, widespread muscle pain, am clumsy and my chronic fatigue ratches up a notch or ten.

4. Seasons, plants & animals

I had no idea until I had skin prick allergy testing that I was allergic to Birch pollen and as a result of that also have problems with apples which make my throat and lips tingly and itchy.

I also get an itchy skin rash from fir trees which I discovered when I moved into a house that had several of them in the garden.  Needless to say I chopped them all down and now have an artificial Xmas tree!

I had a strong reaction to dogs on skin prick testing but I’ve never noticed any problems being around them – no itching, eye problems, sneezing or anything else, which is brilliant considering I have Bertie!  My brother, OTOH, only has to be in the same room as a dog for two minutes and is sneezing his head off and his eyes are streaming.  He’s also allergic to horses but not to cats!

5. Insect bites

I did a self portrait photo in a lovely wildflower meadow last week and stupidly forgot to put on insect repellant beforehand.  I didn’t realize until I got home and started to itch like a son-of-a-bitch that I’d been eaten alive by tiddly little flying critters and four days on am still having to use steroid cream for the itching, swelling and redness.  I have an exaggerated reaction to insect bites, from mosquitoes to gnats, and have ended up in A&E before now just from being nipped by a midgy.  The itching is out of all proportion to the size of the bite wound and drives me absolutely bonkers – here is one of last week’s little nibbles on my thigh:6. Hot water

I know, it sounds nuts to be allergic to hot water but sadly I am!  I luuurve my baths as they’re one of the few things which help my pain levels, but they do make me itch, itch, itch and I’m zonked afterwards.

I am not, however, allergic to heat per se.  I love warm (but not hot!) sunny weather and usually feel my best when the weather is nice!

7. Viruses, Vaccinations and Trauma

Splitting my lip open and having it stitched the other week made me feel rotten for several days as did having a molar removed a couple of years ago.  Wounds and trauma, which necessitate an immune response, naturally plays havoc with my mast cells though usually any reaction is short lived and just involves increased brain fog, nausea, muscle weakness, fatigue and generally feeling a bit fluey and not well.

Viruses and bugs are much more serious and can leave me bedridden for weeks or even months.  The weird part is, though, that just before I come down with a virus I feel absolutely brilliant.  For 24-48 hours 80% of my symptoms disappear and I feel fabulous……….and then the virus hits and I am floored.   I can have a variety of reactions to viruses, from simply feeling a bit MEish, fluey and unwell to full on grade III anaphylaxis the after-effects of which can last for months.

Vaccinations, however, are the worst of all.  The last jab I had was for travel abroad and it was that which led to me becoming severely affected with M.E. and being bedridden for a decade.  One of the immunizations was against meningitis and 5 days later I got meningitis!  I also had a measles vaccine as a child and still went on to get measles, though admittedly not as severely as if I’d not had the vaccination.  My immune system just doesn’t respond in a normal way to jabs and I will never, ever have another vaccination as long as I live.

8. High histamine foods

While it’s unclear whether my food reactions are as a sole result of my Histamine Intolerance, or whether mast cell activation is also at play, I started reacting to high histamine foods when I was 44 having never had a food reaction before in my life.  Within about 20 minutes of eating I’d develop palpitations, my blood pressure would plummet, I’d flush, have oesophageal spasms, retch, pee and pass out – not necessarily in that order.  It was terrifying and I became almost phobic to eat anything as I had no idea at the time what was happening.  It took nearly a year to discover I had HIT and needed to follow a low histamine diet, which thank God has kept my food reactions at bay.  However, during times of mast cell activation my food histamine bucket over-flows much more quickly and I can have more food reactions that I would when my mast cells are calmer.  It’s a constant balancing act, especially while I’m menopausal and my mast cells are all over the shop.

9. Alcohol

Although some alcoholic drinks are high in histamine so are a no-no due to my HIT, some are not but I react to them anyway in the same way I react to high histamine foods and some drugs.

10. Doing too much

The busier I am, and in particular the less rest I get, the more reactive I become.  I’ve no idea why this should be and it kind’ve sneaks up on me, so I have to be mindful when I’m busy that I can’t keep that level of activity up forever without consequences.  Not only does lack of routine, doing too much and not enough rest make my ME worse it also makes my MCAS worse and after only a few weeks I’ll have a hive outbreak, stop sleeping, stop pooping and start peeing like a racehorse.  In fact  I’m doing just that at the moment, probably as a result of my recent mouth injury, rampant hormones, eating crap (I actually had a frozen pizza last week for the first time in 5 years, just because I wanted one god dammit!) and trying to socialize more than I should due to my current feelings of isolation.  My histamine is definitely way up and I really should take more notice of that, rest more and stop eating rubbish.


That’s the bad news, but there is good news too, albeit on a small scale.  Since starting a low histamine diet my migraines are less than they were and my almost daily headaches have disappeared completely.   My horrendous, intractable, untreatable insomnia has improved dramatically after not sleeping for over twenty years and I rarely now have to get up in the night for a wee.  I used to react really badly to smells and fumes, like bleach and hairspray, but for some reason these no longer bother me and despite my exaggerated reaction to insect bites I’ve been stung by a wasp and had no reaction whatsoever.  So it’s not always the case that MCAS will continue to progress and there is at least scope for small improvements.

I’ve no idea what will happen once I’m through the other side Menopause.  If my hormones are the cause of much of my mast cell madness I’m hopeful of at least some improvement once they’ve finally jogged on which, as you all know, can’t come soon enough.  Time will tell.



A novel experience: part 5

By the time I developed M.E. I’d had a couple of regular allergic reactions to drugs.  The first to anaesthetic and the second to an anti-sickness injection.  These were well recognized reactions, if rare, and very different to the weird reactions I’d go on to develop as part of my mast cell disease.

Most Doctors only recognise full on anaphylactic shock, where your throat swells and you have problems breathing, but anaphylaxis can be graded from 1 to 5 (or I to IV depending on the Grading system used) and as my mast cell disease progressed I started having grade 3 anaphylaxis to just about every drug or supplement I put in my mouth.

My very first mast cell reaction back in 1994 was to alcohol, though I didn’t know it was an anaphylactic reaction at the time.  My second reaction was to a supplement and this time I was fully aware my body was in meltdown though of course didn’t know why.  My Mum, who we are now almost certain has both EDS and MCAD, had quite often reacted badly to drugs so to me it was fairly normal and I really didn’t think much of it.

This exert from my book describes this first serious mast cell reaction.  I’d had ME for about 12 months at this stage and was having awful problems sleeping.  My GP wouldn’t prescribe anything as she said sleeping tablets were addictive, so I thought I’d try something natural.  After all, what harm could it do?

“I swallow the little white pill I’d bought at the Health shop, wincing as it makes its way past my swollen tonsils, the result of yet another throat infection.  The tablet contains something called GABA, which is apparently made naturally by the brain and I’d read in a magazine can cure insomnia.  I’d eat rat poison if I thought it would help and as I pull my sleep mask over my eyes and push in my earplugs, shutting out all external stimulation, I offer up a silent prayer for seven hours of heavenly uninterrupted kip.

Twenty minutes later far from being in the land of nod I’m starting to feel a bit peculiar.  My whole body is tingling and I feel hot, ridiculously hot, so with an irritated sigh I sit up and turn on the bedside lamp, crawling forward on the bed so I can see myself in the dressing table mirror.  I’m shocked to find an ashen face with flaming cheeks staring back at me and I can see my chest inside my pyjama top is mottled scarlet red.  Hmmmm.    My sleepy brain is just starting to register that something’s not quite right when every nerve in my body explodes with pain, pricking my skin with a thousand razor sharp needles.

Owwwa!  What the hell?!  I’m wide awake now and more annoyed than worried, realizing my chances of some shut eye are diminishing by the second, but as I try to exhale my frustration I’m kicked in the chest by an imaginary horse, the thump of its hooves a physical blow which steals every ounce of air in my lungs.   The sensation is so real I slump over, my heart suddenly pounding ferocious beats which thud in my ears and all the while I get hotter and hotter until fire reaches my brain, a raging inferno which melts everything in its path.

Conscious thought is lost to the blaze and I hug my head protectively with my pyjama clad arms, rocking back and forwards to soothe the onslaught.  I’m obviously having a bad reaction to the GABA but it’s nothing like the allergic reactions I’ve had to anti-sickness drugs, which made my eyes roll in my head, or the reaction I had after my spinal surgery as a kid which caused my muscles to spasm so violently my back arched inches off the bed.  No, this is something new and I have no idea what’s happening.

I’m weirdly calm yet antsy with a sudden unstoppable urge to move, despite the fact my body is heavy with fatigue, so I start pacing the length of my bedroom, my heart battering against my ribcage, pain tunnelling along every nerve with each thudding step.  I’m not liking this God I tell my invisible Mentor, not liking it one little bit.  In fact, I’m freaking out so if you feel like a bit of Divine Intervention now would be a really good time.  God’s answer is to make me abruptly nauseous and I only just reach the bathroom before vomiting so violently I’m worried my stomach will rupture.

Three hours later I’m still pacing, a rhythmic voyage round the bed and back keeping my adrenalin fuelled body occupied while my heart does the equivalent of a sprint hurdle, my trudge broken only by the need to retch stringy bile into the toilet bowl.  Please make it go away God I beg.  I’m so tired, so very very tired and my tummy hurts.  My knees buckle and I stumble but despite overwhelming exhaustion I keep moving because when I stop the fire in my veins is so intense I don’t know if I can bear it.  It doesn’t cross my mind to dial 999 because it’s the middle of the night and anyway I hate hospitals and would only want to go to one if I were dying.  Which I’m not.  At least, I don’t think I am.  Corpses have to lie down and be dead and I’m far too wired to be that still.

I shiver uncontrollably, fat goose bumps lifting the hairs on my arms, but when I catch a glimpse of myself in the mirror my face is still alight with burning heat.  I wrap my arms round my ribcage, hugging myself for both warmth and comfort, then try some of the breathing the hypnotist taught me, in through my nose and out through my mouth, in a vain attempt to quieten my thudding heart.  It doesn’t work and I become so out of breath I see stars.

‘For crying out fucking loud!’ I stamp my foot hard on the laminate floor, angry that everything I try only seems to make things worse, then instantly regret my strop as searing pains shoot up my leg, sending shock waves rippling up my spine.  ‘And you can piss off as well!’ I tell the pain petulantly.

Indeterminable hours of pacing and puking later, as the streetlights are replaced by weak winter sunshine, the fire in my brain finally dies to glowing embers and my heart, after one final thumping finale, settles into its usual quiet, steady rhythm like nothing has ever happened.  Not quite trusting that the reaction might finally be over I sit tentatively on the edge of the bed waiting for my nervous system to complain, but although every inch of my skin is tingling like it’s plugged into the electric the sensation is just uncomfortable rather than agonizing.  Relief and crushing exhaustion suck the last ounce of strength from my muscles and I crawl gratefully between the sheets, my brain singed, my stomach raw, blissfully unaware I’d just had the first skirmish in a twenty year war with my immune system which would ultimately try its best to kill me.”


MCAD look back

I started this blog in April 2013, just over two years ago, so I thought it was a good time to have a look back at how my mast cell disease and HIT has fared.

I was diagnosed with HEDS in 2010 and my mast cell disease exploded in spring 2012 (although I’d had increasing symptoms for over a decade before that), with acute anaphylactic events after every meal, sometimes even after drinking water.  After much research I was convinced I had MCAD as a resut of my Ehlers-Danlos, and began a low histamine diet.  After four months the anaphylaxis stopped and the relief was enormous.  I also began to sleep better and stopped getting up every single night to pee which I’d been doing for several years, sometimes multiple times a night.

I had horrendous reflux, however, and in August of that year plucked up the courage to try H2 antihistamines.  I initially tried Zantac but it actually made my reflux worse and gave me awful brain fog to boot, so I switched to Tagamet (Cemetidine) which I was amazed to find I tolerated well and which greatly improved the reflux.  It also helped my chronic daily nausea and my upper back pain, which we think was due to acid burning the back of my oesophagus.

I saw Dr Seneviratne in December 2013 and received my official HIT and MCAD diagnoses.  He advised adding in an H1 antihistamine and again I was delighted to find I could tolerate Zyrtec liquid (Ceterizine).  I thought it would help my sore eyes, daily sneezing and hives but sadly it had no effect.  What it did do, however, was help my period pain which has been excrutiating my  whole life.  It also helped my stomach cramps and pain, helped with brain fog and improved my nausea even further.

I ticked along for the next 12 months.  I still had occasional mild reactions to random foods for no apparent reason, and sometimes felt weird after taking my H2 antihistamine, but all in all things were fairly stable.  Until Christmas 2014 when I realized the reactions after taking the Tagamet were getting worse and I had a full on anaphylactic event at the beginning of March this year.  I had to stop taking it and, despite trying other brands, couldn’t find another I could tolerate.  I also tried three different PPIs, eg omeprazole, and couldn’t tolerate those either.

For the first few weeks without the H2 my reflux was dreadful and the pain was hard to live with.  Thankfully, though, it’s settled down now and is at least bearable most days.  My nausea, on the other hand, is horrendous and as I type this I just want to puke.  In fact, I probably will as soon as I’ve eaten my breakfast because eating anything makes me sick as all hell.  I’m allergic to any of the drugs that might help this, so it’s pointless even discussing it with my GP.  I’m also not sleeping as well as I did, and my upper back pain is really troublesome.

I’m also back to reacting to foods.  The food doesn’t seem to matter, it can be any random thing.  One day I’ll react to shepherd’s pie, the next day I won’t.  One day I’ll react to risotto, the next day I won’t.  The hour after I’ve eaten anything is pretty miserable, with severe nausea, stomach cramps, blood pressure fluctuations, and just feeling ‘weird’ and not well.  It’s really starting to get me down, as I don’t know what to do about it.  I’m still on my diet and I can’t tolerate drugs of any description so I’m not sure where to go from here (if anywhere).

Then last month I had a reaction after my H1 antihistamine, so I’ve had to stop that as well.  I now feel more fatigued, brain fogged and more MEish/fluey than usual.  As you all know, I also had the worst period I’ve had in forever this month which I’m sure is related.

Dr S did give me a prescription for Sodium Chromoglycate but I haven’t tried it for two reasons: the first is that several of my friends have tried it and it’s made them feel dreadful; the second is that, even if I tolerate it now, you can guarantee that at some stage in the future I’ll become allergic.  It’s been that way with every drug I’ve tried in the past twenty years – I tolerate it for so long then, bam!, my body rejects it.  Bearing that in mind I really can’t see much point in even starting it.

So, things are pretty miserable at the mo and quite scary if I’m honest.  I wish I had better news for you all.  I have no idea why I’ve gone downhill again and don’t know if things are going to settle down, get worse or stay the same – I guess only time will tell.

Weekly roundup

Geez this week has gone quickly – I can’t believe it’s Sunday again already!

I’m starting with some good news for a change.  After 9 months of problems my hips finally seem to have settled down.  I am now able to walk without pain and even bending and twisting in the garden every day this week hasn’t bothered them – I am one happy chick 🙂 .  They are, and probably always will be, stiff and I’m resigned to never again being able to sit cross-legged or sleep in my usual comfortable position, but the nagging, shooting, stinging, aching pain has gone and for that I am truly thankful.

The other good news is that I’m still managing without any H2 anti-histamines for my GERD after I became allergic to the tablets I’ve been taking for the past 2 years.  The first couple of weeks were really tough, with incredibly painful rebound acid production, but this seems to have settled down to a mild/moderate pain which I’m hoping to just be able to live with.  It’s not pleasant, but it beats the anxiety of popping a pill every day and wondering if all hell is going to break loose.  The biggest downside of having reflux is the godawful taste in my mouth, which makes me self-conscious that I have bad breath when I’m talking to people :-/ .

The bad news (you knew there’d be some 😉 ) is that since my drug reaction my mast cells have been super twitchy and I’m having some mild reactions every time I eat.  Mild tachycardia, anxiety, sudden low mood and mild stomach cramps, plus pins & needles in my bum and persistent nausea.  Luckily they only last about 10 minutes (well, apart from the nausea which I sometimes have all day) so I’m coping, but it’s not fun and I hope it all settles down again soon.  I’ve found in the past that once I’ve had an anaphylactic episode my mast cells can become super alert for months, so the reactions aren’t unexpected.  I’m not reacting to any food in particular, so I’m thinking the culprit is the act of digestion itself which produces histamine and being as though my histamine bucket is obviously already full the digestive histamine is causing problems.

On the plus side my butt hive outbreak has cleared up, my sleep isn’t as disrupted and my constantly runny nose has calmed down a bit, so I’m hopeful this latest flare is on the wane (famous last words!).

I have a very exciting week ahead as Wednesday is our Camera Club’s Annual Dinner and presentation night.  I’m receiving a trophy for winning the Millennium Cup Competition, and also found out this week I won Beginner’s Digital Image of the Year with the same picture 🙂 .  It’s the first time I’ve been out for dinner in the evening for………actually I can’t remember the last time, maybe my 40th birthday seven years ago.  I just hope adrenalin keeps me going and I don’t react  too badly to my meal!  I’ll let you all know how it went.



When Fears Come True

As anyone who’s read my blog will know, my biggest mast cell reaction is to drugs.  There is barely a single drug I can tolerate: from aspirin to valium, anti-emetics to steroids I’ve had anaphylactoid reactions to them all (if you want to know what my reactions are like read this post).

Due to my mast cell disease, and a hiatal hernia due to my Ehlers-Danlos, I have rampant GERD.  And I mean rampant.  To the point where the acid burns my oesophagus and causes ulcers, and I inhale it into my lungs and give myself walking pneumonia.  The pain of severe GERD is like nothing on earth.  To be burned with acid from the inside is not fun.  The pain in my back gets so bad I can’t sit upright and it radiates down both arms to my elbows.  My throat and mouth also become burned and the taste is so vile I can barely stand it.  I feel like my entire upper torso is on fire.  And before anyone tells me to stop eating gluten or dairy because it cured their reflux PLEASE don’t – I’m liable to tell you to shut the fuck up, you have been warned.  Not eating wheat will not cure my hernia, which is due to shitty collagen rendering my oesophageal sphincter defunct.

To control my reflux I have been able to take Cimetidine, an H2 antihistamine which blocks stomach acid.  I tried Zantac, the first drug of choice, but it didn’t agree with me and gave me awful brain fog (worse than usual, and it’s already bad enough).  But I’ve been taking 4 tablets of Cimetidine daily for the past 18 months and it’s kep the GERD at bay.  Until this week.

I knew that, eventually, I’d become allergic to the Cimetidine.  It’s been my biggest fear.  I become allergic to any drug I take over the long term.

I’ve been having small reactions after taking the Cimetidine for about a month now (pins & needles in my bum, crampy stomach) and just ignoring them, hoping they’d go away.  They didn’t.  They escalated on Monday to an all out anaphylactic reaction, with a heart rate of 125 and a bp of 145/75 (my usual bp is 118/55).  I gave it a miss for a couple of days, hoping things would calm down but no such luck.  I can no longer take the Cimetidine.

Ages ago, my GP had given me a Proton Pump Inhibitor to try – Omeprazole.  I still had it, and it was still in date, so this morning I gave it a try.  Just a teeny tiny bit on the end of my tongue – what harm could that do?  Anaphylactic reaction is the harm that could do, with sky high bp and heart rate, and cheeks so red I could light up my entire village (I took it 4 hours ago and am still flushed).  Fuck.

As I’ve had no drugs all week, my GERD has had a field day.  The pain is worse than anything I’ve ever had to endure.  I can’t live with it.  Suicidal thoughts plague my every waking moment.

I’m speaking to my GP in the morning, but realistically what can she do if I can’t take any acid reducing medication?  I swill Gaviscon like it’s water and it does not help one iota.

I’m super depressed as you can imagine.  I’ve lived with this shit for over 20 years and I’m just exhausted from it all.  I live every day with the fear of what I’ll react to next and it’s just so tiring.  I’m always allergic to anything which might help me.

Needless to say I won’t be writing much on here until I can get things under control.  I tend to just go into myself when I’m going through a bad patch and don’t want to to be online and ‘chatty’.  And it’s not in my nature to come online and whinge – it doesn’t help me and you all have your own woes.  So this is me saying you might not hear from me for a bit.  I’ll be back when I no longer feel like slitting my wrists in the bath (a thought which enters my head on an hourly basis).

Jak x

p.s. before I go, I’d planned on sharing a book with you in my next post, so I’ll share it in this one instead.  ‘Girl in the Dark’ by Anna Lyndsey is the true story of a woman who suddenly becomes allergic to light.  Not just sunlight, all light, and lives in a completely dark room.  No laptop, no TV, no sunlight, no moonlight, no fresh air from an open window………..just total blackness.  It’s recently been serialized on BBC radio for those who can listen online http://www.bbc.co.uk/programmes/b0540b3h but is also available to buy in hardback or Kindle download from Amazon.  There’s always someone worse off than you……


Reactions & Anaphylaxis

I’ve been asked what kinds of mast cell reactions I have and in truth it’s hard to answer.  Many of my symptoms, particularly my Gastro-intestinal symptoms such as poor transit, reflux & nausea, could be down to mast cells, Ehlers-Danlos, M.E. or Dysautonomia so it’s difficult to say what is causing what.  The same goes for symptoms like fatigue, brain fog, pain, bruising, insomnia and a wide range of other issues.  I did a Blog Post on the similarities between these diseases which explains the problem more fully.  There are some symptoms though which, to me, are obviously mast cell related.  These are:

  • Itchy skin, ears and scalp.  I have no idea why my scalp itches, as I don’t use any products on it like hair gel or hairspray, although I do colour my hair every 8 weeks.  My itchy scalp has been helped by The Green People’s Itch Away shampoo, but it hasn’t gone entirely.  My skin can itch for absolutely no reason too, though I can do things to trigger an attack: getting into a hot bath (it’s the change in temperature apparently and the itching does settle after 5 or 10 minutes); wearing certain fibres like pure wool next to my skin; wearing anything too tight for example a watch strap or ring; using moisturizers (though I use basic moisturizers anyway, as having skin that’s too dry causes it to itch too!).  The outside edge of my ears constantly itch like mad and I’m clueless as to why.
  • Dry, gritty, sore (often red) eyes. I also have very severe floaters for my age which I’m almost certain is down to inflammation caused by MCAD.
  • Hives (ie urticaria).  These are confined to my backside and can appear for no obvious reason.  However I do also have triggers such as the Birch pollen season (to which I’m allergic) and stress.  They last 2-6 weeks, which I’ve discovered is quite a long time compared to many people whose hives come and go in a couple of days.
  • Dermographism (a different type of urticaria).  I’ve had this all my life and had no idea until 2 years ago that other people’s skin didn’t welt up!  My dermographism is caused by pressure, so wearing anything too tight, scratching my skin, labels in clothing (particularly at the back of the neck), or leaning for prolonged periods against a hard object can set it off.  It’s itchy but the welt usually only lasts about 10-30 minutes after the stimulus has been removed.
  • Sneezing.  For the most part I have absolutely no idea what sets my sneezing off.  There again, I had no idea that other people didn’t sneeze as much as me (my Mum sneezes for England so I’ve always thought it was normal – we think my Mum also has MCAD!).  I have different kinds of sneezing: I can sneeze but have no blocked, itchy or runny nose; I can have a very blocked nose which again doesn’t itch; or I can sneeze and my nose swells, streams and itches like crazy.  Whatever the scenario it’s not very lady-like.  When I sneeze I nearly blow my head off and it’s a wonder the entire village can’t hear me!  The very first thing I do most mornings the second I wake up is have a sneezing session.
  • Sudden and inexplicable anxiety or feelings of impending doom.  I can be sitting, relaxed, watching TV and all of a sudden my stomach sinks and I get a sudden feeling like I want to sob, or that something horrendous has just happened.  I’ve had these symptoms for about 15 years now, and trust me when I say you never get used to them.  I can’t work out what sets them off, other than being over-tired (hard to avoid when you have M.E.!).  To be so out of control of your emotions is really quite scary.
  • Reactions to being over-tired, particularly mental over-exertion.  For example if I’m on the computer for too long, knowing I’m getting tired but pushing on regardless, I start to get very, very hot.  My ears turn red and itch, my face flushes and I get a sore, swollen throat.  It took me ages to twig that this was a mast cell reaction, as it seemed so bizarre!
  • Reactions to treatments, eg. I’ve reacted to acupuncture, reflexology, osteopathy, massage and a reaction to chiropracty was so severe I was taken via ambulance to A&E (I ended up losing 9lbs in weight vomiting for 3 weeks and had to move in with my parents for a month as I was totally bedridden and horrendously ill – took me a whole year to get over that event!).  The reactions to treatments are identical to my drug reactions – I immediately know if I’ve reacted to something as my blood pressure plummets, I go ashen, feel dreadfully ill and on the verge of collapse and develop instant tachycardia (the vomiting, muscle spasms and various other symptoms appear later).
  • Environmental reactions.  By this I mean getting too hot or cold, or reacting to changes in the seasons or barometric pressure.  I haven’t been to the seaside for donkeys years.  Being near the British sea, with the salty air and almost constant wind, makes me feel like I’ve been hit by a truck.  I ache all over, feel fluey and ill, my brain function virtually disappears, and I’m so fatigued I literally can’t sit upright.  Many people dream of living near the seaside but me, I can’t think of anything I’d hate more.
  • Drug reactions (see below).
  • Food reactions (see below).

I’ve thankfully never had classic anaphylaxis, with shock, swelling of the throat, fainting and loss of consciousness.  I’ve outlined what happens in my drug reactions in this Blog Post.  My food reactions are similar, just not as severe thank heaven.  They are nervous system reactions rather than immune reactions, though have some symptoms in common with acute anaphylaxis such as tachycardia or palpitations, changes in blood pressure, flushing and vomiting.  However, anaphylaxis isn’t as cut and dried a diagnosis as many doctors make out.  Yes there is classic, acute anaphylaxis – the kind people with peanut allergies have if they eat a nut.  But there are also more subtle anaphylactoid reactions which don’t result in total collapse but can be equally as scary and serious.  There is an excellent article on anaphylaxis on the IA Information Centre website which grades anaphylaxis into 4 stages – I would appear to be between stages 2 and 3 depending how severe my reaction is.

So why do my reactions affect my nervous system and not my immune system?  I have a theory, but I stress it is only my theory.  There are currently 4 known histamine receptors in the body:

  • H1: when stimulated create hives, skin symptoms, hay fever symptoms, inflammation and are the receptors involved in traditional anaphylaxis.
  • H2: present in the stomach and when stimulated create excess stomach acid, inflammation, reflux/GERD, constiptation/diahorrea, Irritable Bowel Syndrome, nausea, vomiting.
  • H3: which live in the brain and nervous system and when stimulated affect heart rate, blood pressure, smooth muscle contractions and the release of neurotransmitters.
  •  H4: not much is know yet about this receptor but it lives in  white blood cells, the spleen, colon, thymus and bone marrow, and is thought regulate the immune system.

I’m convinced that instead of H1 receptors being stimulated in my reactions it’s H3, and as H3 receptors live in the brain and at the ends of nerves they are causing all the central and autonomic nervous systems I encounter.  I must try and remember to ask Dr Seneviratne about this at my follow-up appointment next month, though very little is known about both H3 and H4 receptors so he may simply not have the answers.  Unfortunately there are no drugs which target H3 or H4 receptors, which is why I think giving me H1 or H2 anti-histamines (such as Benadryl or Tagamet) for my reactions would prove futile, though I haven’t tested this out, having not had a serious reaction since learning I have MCAD as I avoid all my trigger drugs and situations.  I’ve actually had a reaction to both oral and inhaled steroids, so something like prednisone would be out of the question too.  It’s really quite frightening to think I could have a very serious, potentially life threatening reaction, and realistically no drugs could help.

The best advice is to avoid your triggers, which is impossible when you don’t know what some of your triggers are or you react to hot water or changes in the weather and seasons.  I’m fairly sure I’ve recently started reacting to my dog (I tested mildly positive for dog on skin prick testing, but true allergies can become more severe the longer you have contact with the allergen), but I have no intention of getting rid of him and it’s impossible to avoid contact with an animal you share a home with.  I also don’t think starting peri-menopause has helped my reactions one iota as changes in hormones can cause new or increased allergies even in ‘normal’ people, let alone someone who already has wildly misbehaving mast cells.  MCAD is a tricky and complex condition to get to grips with and you can guarantee the second you finally feel you’re on top of the situation the goal posts change and you suddenly start reacting to something new that previously gave you no problems.  It’s tiring and emotionally draining to have to be constantly on the alert and difficult not to feel anxious about what any given day may hold.