For some strange reason, it’s never occurred to me until today that some of my readers might not know whether or not they are having anaphylaxis. When I first started having anaphylaxis I had no clue that’s what it was, although I knew it was something pretty catastrophic and I genuinely thought I’d die (turns out that wasn’t an irrational fear!).
Grades of Anaphylaxis
All most of us know about anaphylaxis, if we know anything at all, is actually about anaphylactic shock, ie an acute, life-threatening allergic reaction which results in loss of consciousness and potentially death. However, anaphylaxis is a graded allergic response, which can vary in severity from mild to severe. Just to complicate matters, there is no universally agreed grading system but most anaphylaxis charts are a variant of the one below:
My experience of anaphylaxis
We are all different and in typical Jak form my anaphylactic reactions don’t conform to any of the grades in the table!
Symptom 1 is a massive head rush. It feels a bit like something has exploded in my brain with a big whoosh and my whole head gets severe pins and needles. These pins and needles then spread throughout my body and explode with pain in my feet and finger ends. I know, right there and then, that I am in trouble. My brain then feels like it’s cramping, just like when you get a charley horse in your calf.
Symptom 2 is the feeling of being thumped hard in the chest, followed by a racing, pounding heart beat. This comes on only seconds after the head rush. This of course is accompanied by a rise in blood pressure, usually with at least a 30 point increase in both systolic and diastolic pressures. Note: this does not fit the usual criteria for anaphylaxis, where there is a drop in blood pressure.
Symptom 3 is facial flushing. This comes on almost simultaneously with the increased heart rate. I also have a large, blotchy red rash all over my torso.
Symptom 4 is muscle spasms. My entire body gets the cramps, my back being particularly badly affected – it can be intensely painful.
Symptom 5 is a huge adrenalin rush. I absolutely cannot sit still, and usually have to pace up and down, up and down, up and down, virtually wearing a hole in the carpet. Depending on the severity of the reaction, this has been known to go on for several hours. It is impossible to either sit or lie quietly in my bed, no matter how utterly exhausted or ill I might be.
Symptom 6 is oesophageal spasms, which lead to me retching and retching and retching. Sometimes I feel intensely nauseous, other times not. I don’t vomit, just retch to the point where I can hardly breathe.
Other symptoms include either sweating or shivering, facial pallor in addition to the flushing, needing to pass a bowel movement (though normal in consistency and not diarrhoea), needing to pee, muscle weakness and utterly overwhelming fatigue.
My reactions have never included itching (pruritus) or hives, and I’ve only had very occasional swelling (oedema) of my eyes and/or lips. I do have itching and hives on a chronic level which I’ll talk about in another post, but never as part of an acute reaction. I’ve never thankfully been rendered unconscious, though I have fainted.
As anaphylaxis is a graded response, not every reaction is severe. Yesterday, I was at a friend’s house having a brew. He’d bought some little mini chocolate fondant cakes to eat which I’d never had before, and within 5 minutes I got the head rush and some mild pins and needles. My heart started to race and my face to flush, but I was able to control my breathing, the reaction didn’t escalate and after a short while the symptoms settled down. I carried on the conversation with my friend like nothing was happening and he had no idea I was having an allergic reaction to the cake!
Without a doubt, the trigger most likely to bring on a severe anaphylactic reaction for me is medication. Luckily I can avoid drugs most of the time but when I desperately need to take something, such as pain meds or antibiotics, I can sometimes tolerate a child’s dose, or liquids which I cope with much better than tablets or capsules. Some drugs, though, are totally off the table, including sedatives, anti-emetics (ie drugs for nausea and vomiting), anti-depressants of any variety and general anaesthesia.
Alcohol is to be avoided at all costs and is the only thing which has ever caused me scary facial swelling.
Foods high in histamine, such as cheddar cheese, tinned tomatoes (which are high in GABA, see below!) and tinned or fresh (aka days old) fish, are also off the menu as they cause instant reactions. I’ll talk about chronic reactions in my next post.
Other foods which have caused me problems seem to be fairly random, such as the iced fondants mentioned above, chamomile tea, the red jam found in cream cakes like doughnuts, paprika and cayenne pepper (but not curry or chilli powder), yoghurt (though I’m fine with other dairy, so it’s either the fermentation process or the live cultures), some chocolate (but not other chocolate). Whenever I try something knew I never have any idea how it will go and eating out is still a game of Russian Roulette.
I’ve also had anaphylactic reactions to some supplements including magnesium (including epsom salts), GABA (found naturally in tomatoes to which I also react), sublingual B12, glutamine, melatonin, valarian, lemon balm and the herbal laxative Senacot, hypromellose eye drops, massage, osteopathy, chiropracty and acupuncture.
Menstrual hormones have always caused me problems and it was starting peri-menopause in my early 40s which sent my mast cells into melt down. I am always more reactive in the week leading up to my period, and have more issues with reflux, itchy skin, insomnia, muscle cramps and migraines. Roll on the menopause is all I can say, which seems to be taking for sodding ever!
When I was a very small child, I used to get “chapped lips” in winter. Almost all my winter primary school photos show me with a huge red welt under my mouth which sometimes reached down to my chin. Then, when I was around 14, my lips started to swell if I went outside when it was cold and wet. I know that sounds completely bonkers, but the weather caused my first allergic reaction. My lips swelled to such an extent that even my GP could see the oedema, but simply couldn’t get her head around the fact it was rain that set it off. It lasted about 2 years then the swelling just stopped. I do, though, still get tingly chapped lips when it rains. As I type this we are having a storm outside and I have done nothing but cover my lips in Chapstick since the minute I got up! I never mention this to anyone……can you imagine their reaction? 😉
I had my very first acute allergic reaction at the age of 16, following spinal surgery. I suspect it was the general anaesthetic, but it could actually have been any of the other drugs used in the operation or one of the post op drugs given for pain relief. It wasn’t a full on anaphylactic reaction and was confined to my muscles, which spasmed so badly for 3 days following the op I had to be given muscle relaxant injections.
The next reaction was an ocular-gyric crisis to the drug Stemetil, which I’d been given because of a severe vomiting bug when I was 17. I was unwittingly given this drug again when I was 24 and had another severe reaction – it was this which led to me developing M.E.!
My next reaction at the age of 25 was to alcohol, which caused my whole face to swell and me to pass out. I’d always flushed after drinking alcohol but the allergic reaction came out of the blue and I have no idea what set it off. I haven’t been able to drink from that day to this – I’d kill for half a cider 😉
The next reaction was to melatonin aged 26, and is one of the scariest reactions I’ve ever had.
During the next 10 years I reacted to one thing after another, including various drugs like paracetomol that I’d used without problems since I was an infant, and innocuous things like chamomile tea and laxatives, plus any kind of bodily manipulation such as massage or osteopathy.
By the time I was 40, almost all drugs were out of the question.
At the age of 44 I started having anaphylaxis to food after having no food reactions before in my life. At the time it seemed random and anything would set the reaction off, though of course I later discovered it was to foods high in histamine.
As my biggest trigger is drugs, on the whole it’s easy to avoid them. Things, however, become more tricky when I absolutely need to take meds, such as having an infection requiring antibiotics or anaesthetic for dental or other procedures. In these situations I avoid drugs I’ve reacted to in the past, and just keep my fingers crossed when trying anything new.
Going on a low histamine diet was an absolute game-changer for me. It took several months for my food reactions to calm down, but now it’s rare I react to something and if I do it tends to be mild and manageable.
I am now very careful not to get bitten by insects, so use a non-chemical insect repellant spray during spring, summer and autumn whenever I’m outdoors, even in the garden.
I know stress and strong emotions (both positive and negative) cause my mast cells to have a hissy fit, so keeping my life calm, avoiding conflict, and having a strict routine where I eat well and get plenty of rest is massively important.
Due to past reactions with supplements I have never had the courage to try Quercetin, Vitamin C or any of the other things recommended for MCAD. I do, however, take a Vitamin D supplement as I’m largely housebound and live in the north of England where sun isn’t exactly at a premium, and iron as my ferritin stores were low. You’ll notice both are in liquid form – I avoid tablets and capsules like the plague.
There are 2 types of antihistamines used in HIT and MCAD:
- H1 blockers like cetirizine (Zyrtec), diphenhydramine (Benedryl), Chlorphenamine (Piriton) and loratadine (Claritin) used to treat hayfever-type symptoms, or in the case of Benedryl more acute allergic reactions;
- and H2 blockers like Ranitidine (Zantac), Cimetidine (Tagamet) & Famotidine (Pepcid) used to treat reflux, which occurs from an abundance of overly-zealous mast cells in the stomach.
I have had reactions to various H1 antihistamines so am very careful with them. Luckily I have found one liquid brand of H1 antihistamine I can tolerate, but will only take it if I have really troublesome hayfever issues (usually in the spring).
I’ve also had problems with H2 antihistamines. I frequently react to ranitidine, so am currently on famotidine. I have reacted to famotidine in the past too, but after a break have started to tolerate it again – weird, but then that’s my life 😉
Many people with MCAD and/or HIT have a big problem with stomach acid/GERD and in addition to H2 antihistamines I also use Gaviscon liquid which creates a barrier to stop the acid from entering my oesophagus which, trust me when I say, is pure torture.
I have chronic hives and neither H1 nor H2 antihistamines have any effect on them whatsoever. If they become really itchy and bothersome I have to resort to topical steroid cream, which is the only thing that will clear them up.
All the above keep my symptoms at a manageable level and I thankfully have never had to resort to more potent mast cell stabilizing drugs such as sodium cromoglycate, montelukast, ketotifen or similar. I would be petrified to even try them, having had a reaction to both steroid tablets and inhalers, both of which are used to treat acute allergic reactions
MCAD doesn’t conform to what most doctors are taught about allergic reactions. We don’t even have ordinary anaphylaxis, which is driven by an IgE immune reaction, and little is currently understood about the mechanisms which lead to symptoms in mast cell activation disorder.
We are all, also, individual and your reactions and triggers will differ to mine, as will your response and reaction to treatments.
I think the best any of us can hope for is to identify, and avoid, triggers and to work out a treatment plan which keeps the illness manageable, which is no easy feat and can take a long time. I feel lucky that my MCAD has been stable now for a good 5 years which isn’t to say I don’t have symptoms and no longer react to anything, but my reactions are milder and I’ve been able to identify and avoid the things which launch my mast cells into orbit. Long may that continue!