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:-
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.
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:
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!
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.
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.