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.