Tag Archives: anti-histamine

MCAD look back

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.

The H1 Experiment

Since the last week in October I have been adding an H1 anti-histamine to my daily H2 anti-histamine regime (as per MCAD protocol).  My H1 of choice is the non-sedating Zirtek oral solution (Cetirizine Hydrochloride).  As usual, I started off with a teeny tiny drop on the end of my tongue, but for the past 2 weeks have been taking the full adult dose of 10ml daily (though I take it in the paediatric dose of 2 x 5ml spoonfuls at 10am and 8pm, being as though I often wake in the night sneezing my head off and thought that just one dose in a morning would have worn off by 4am the next day).

So far, it has made not one jot of difference to my symptoms.  I am still sneezing, still itching, still very tight chested and have a fresh outbreak of butt hives!    I also have raging insomnia which is making me sooooo tired (don’t know if that’s the drugs or just a coincidence, as my sleep has been rubbish since I developed M.E. in 1994).  Maybe the Zirtek just needs a bit more time to work, or maybe I need to up the dose – I’ll discuss with my Consultant when I see him.  It is, however, yet another miracle that I am tolerating it at all.  Honestly, I haven’t been able to take a drug in 6 years, yet am now on both Tagamet and Zirtek without an anaphylactic reaction.  To say I’m gobsmacked is the understatement of the year!

Another good thing to happen in the last 2 weeks is that my heartburn has reduced quite substantially, although it does creep back if I’m late taking my Tagamet even by an hour.  However, I started the Hernia massage and the gluten-free diet (see my next blog post to be published in a day or two for an update on how that’s gone) at the same time as the Zirtek, so I’ve no idea which has been the helping factor.  At the end of November I will try re-introducing gluten back into my diet, so if the heartburn comes back at least we’ll know.  But if it doesn’t, the positive change would be down to the Zirtek.  I’ve read that you can have hives in your GI tract, so that would actually make more sense than you’d think.

I’m just about over my hissy fit at not being able to get to London for my results on Tuesday.  I’ve re-booked to see Dr S next month and will just have to keep my fingers, toes and everything else crossed that I will be well enough on the day to make the trip!  If it were today I still wouldn’t be going because I feel lousy.

Changing the subject entirely, I miss baked beans, particularly at lunch-time.  Not the most nutritious of convenience foods due to their sugar content (though the haricot beans are a good source of protein), but so versatile: I had them on a baked spud; with scrambled egg; put them in casseroles; had them on toast…….  So for the past 2 weeks I’ve been perfecting a baked beans recipe.  I think it’s just about there, though you might need to tweak the ingredients to suit your particular taste (making it less sweet by reducing the sugar or treacle, or making it more sour by adding more tamarind, bearing in mind my recent discovery that UK and USA tablespoons are not the same!).  The sauce is darker than tinned baked beans, but honestly if you close your eyes the taste really isn’t bad considering they don’t contain any kind of tomatoes (let’s face it though, they’re never going to be Heinz, so don’t expect miracles!).  See the Recipe page for details.

Photo of baked beans