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.