I was in two minds whether to write this, because I normally like non moany posts about frivolous topics like dieting and exercise and naughty pets and baking. Occasionally, I *might* touch on some Science. Occasionally. But having spent about 3 hours trawling the net readings people’s stories, and being enormously helped by them, I thought I ought to share mine.
I was a sort of allergic-response kid. Many things would bring me out in an itchy rash: pine needles, sun, sand, fake whipped cream, grass, blah blah blah. It required nothing more than an occasional piriton (chlorphenamine maleate) – rarely even that. It didn’t stop me doing anything, except occasionally, and rather conveniently high school sports lessons (me? Roll around in the grass to get out of it? Scratch my arms for no reason so they came up in a rash that would last exactly 2 sports periods? Why yes. Yes I would).
Then, one day in my early-20s I was up a mountain in Romania and got some sort of sting. It blew up, itched like mad, but I ignored it. I had kids to teach dammit! Over the next 12-24 hours, it all got worse and worse: the welt got bigger, spread to other welts and my breathing got harder and harder and I coughed more and more. Until I blacked out. I got to the Dr, she infused me with liquid anti-histamines and steroids (shots and IVs), replacement IV fluids and told me to take it easy. It was terrifying. We were a long way from a hospital and the facilities were limited. My tourniquet was a broken hair band… my IV stand a scared pupil. But, it was 100% clean, new needles and all, and I was better… for about 24 hours, when it came back, so she repeated the process. And repeated it again. Until she was worried my veins would collapse and sent out for medications that arrived up the mountain the next day. Kudos for good care in a remote part of a challenged country: This did keep a lid on it. And eventually my fear about it dissipated, and by the time I got home to the UK all tanned and jolly and full of Romanian Pizza, I had all but forgotten about it. I never followed it up, and wasn’t bothered by it for about 5 years.
Then I was in my mid- 20s when I was in the shower one morning and noticed few red, itchy welts on my forearm. “Odd”, I thought. I meant to take an anti-histamine but forgot. However, it was gone by lunch (maybe sooner) and I forgot about it until the next day when it arrived a few mins earlier, covered a larger area and stayed about an hour later. But again, it disappeared completely. This happened repeatedly over 10 days, starting earlier and earlier and staying longer and longer, and getting bigger and bigger welts, until it was really quite debilitating, as I couldn’t sleep. I should have seen a Dr, true, but I have seen them for allergies before and not had much joy.
Eventually, when it was full body, and the welts were getting bigger and bigger, I made a routine Drs appointment for 3 days time. 2 days later… things did not go so well.
I was at a friend’s house for dinner, and the rash was all over my face, neck, everything. Everything was swollen and I felt RUBBISH. His mother offered me a sleeping pill + anti histamine pill, but she couldn’t find them and I didn’t want to make her drive all the way to a 24h pharmacy. You will soon see why this was the Best. Move. Of. My. Life. When we got home, I looked like this:
and can felt what I have only (very accurately) heard of as an ‘impending sense of doom’. I didn’t care that is was after midnight and we didn’t have a car. All I know was that night bus or not, we had to get to ER now. In fact, the night bus would be too slow. We had to get a taxi.
By the time I arrived at hospital I was fading fast. They took my blood pressure and my oedema had gotten so bad, I had lost enough fluid to be dropping my blood pressure and in a serious danger zone. Luckily, one IV steroid shot, 2 bags of IV fluid (phew, talk about wanting to HURL) and 1 piriton shot later I was OK. I was sent home with steroids (on a schedule), lots of piriton (to take ‘like tic-tacs’) and the knowledge that had a taken a sleeping pill, given my slow descent into unconsciousness I probably would not have woken up. Lovely.
And all was sort of OK. The allergy bubbled under all summer.. I was on and off steroids and in and out of ER. Eventually I tried a low histamine diet, emoving all the allergens from my house (dust, flees everything) and fexofendadine (recently re-released in the UK. Allegra to US peeps) and that combo + regualr low level steroids kept me out of hospital. No allergy panel could fix it… everyone was at a loss. Then one day (while on holiday in Greece actually) I realised that it has just cleared up. Gone. And I didn’t see it again.
Until my 30s (ouch). Actually, I realise now that is only a couple of years later. I moved to Alabama and was fine for over 2 years. I got one bite (one in a long line)… and it blew up. I got a Benadryl shot, felt like rubbish, but thought no more of it, until I realised that breathing was not quite the ‘given’ it had been that morning. Yup, off to hospital and back on the anti histamine / steroid rounds. Tough break. And that has been my summer of 2011… get bitten, watch it swell up to bigger than my hand span, watch the swelling spread to legs… back… face (ick!)… sometimes have trouble breathing, sometimes watch my blood pressure fall. Take lots of steroids, take lots of anti histamines… get better, for about 2-3 weeks.
So… I thought I would share my story. I don’t know why. Because, I guess, googling other people going through this helped me in a Benadryl induced haze. Because sometimes when modern medicine has no answer it is nice to know you are not alone, and not making it up (I still half think I am being a drama queen, and hence am not very good at acting upon the problem and getting to hospital).
And the good news? My awesome PCP Dr. Kynerd came up with a plan to get off this steroid cycle: as soon as I am bitten, I use my epipen. No question. I thought it was dramatic, but he pointed out that 5/6 bites have landed me in hospital and the other one still had to be remedied with steroids. He said the time had come to go preventative, not curative and epipen when I am bitten. I said that I thought epipens were just for anapylaxis, but he said that I was getting closer and closer to that, and soon it would be too late (!) It would stop any reaction in its tracks, even hives and odema so must be done. So – if it helps anyone out there take to your PCP / GP about trying it. It might work.
In other good news, it also doesn’t really affect my life. I still hike, bike, run, work, chill have fun, love life 🙂 I lose a day or two of work here and there (but I also getting more and more up to date with Gossip Girl) because I feel so lousy on the drugs, and man… am I swelling up on the steroids. But, if you are going through this, or your child is, and you are scared: don’t be 🙂 And don’t think you are making a fuss about nothing, just react and deal with it and you’ll be fine 🙂
Stay well 🙂