I thought following a low histamine diet would help my rampant heartburn – how wrong can you be? It’s absolutely horrendous and feels like there is a man with a blowtorch living in my gullet. I am on fire from the tip of my tongue to the pit of my stomach and everywhere in-between. My mouth feels like I’m living on a diet of chillies and the constant taste of acid in the back of my throat is truly disgusting. Nothing I do calms the heat.
I settled down to go to sleep last night at about 11pm but the pain was just so intrusive I couldn’t nod off. I was tearful and exhausted and had no way of alleviating it. The bed head is already elevated 6″ off the ground which in theory should help stop acid from running back into my mouth at night (it clearly isn’t working), and I’m taking extra doses of Gaviscon Advance which should be helping neutralize the acid (I might as well be drinking water for all the good it’s doing). I know I need to try some H2 antihistamines, like ranitidine, to actually reduce the amount of acid my stomach is producing but am so petrified I’ll react to them I’ve been putting it off for about 12 months Not just because of a potentially negative reaction (which is bad enough and can make me ill for weeks, sometimes months), but for the mental torture that if I do react I’ll just be stuck with reflux for the rest of my days, the thought of which spins me into quite a deep depression (mind you, I’m already quite depressed with the pain ).
I also don’t want to take any drugs at all before I hear back from the Immunologist. He mentioned a 24 hour N-methyhistamine test, and if he requests that in his letter to my GP I want to do it while my stomach (and therefore mast cells?) are playing up. It will be 2 weeks on Wednesday since I had my appointment, so I’ll chase my GP up then if she doesn’t contact me first. Not only will I get to hear what my actual diagnosis is (which will be wrong in any event and I’ve already requested a second opinion from a mast cell specialist in Manchester) but I’ll also get to know the results of my tryptase blood test (the test for Mastocytosis). Not that I think I have Mastocytosis, as people with Ehlers-Danlos Syndrome are prone to Mast Cell Activation Disorder not Mastocytosis, but it will still be interesting to see how abundant my mast cells actually are.
I feel like I spend half my life waiting. Waiting to see my GP. Waiting for my GP to refer me to a consultant. Waiting for my appointment to see the consultant. Waiting for tests, scans, X-rays, blood work. Waiting to see my GP for the results of said tests. Waiting for diagnosis. And then starting the process all over again because either the diagnosis is a pile of crap, or I’ve started with another symptom which needs to be investigated! They say life is a journey, not a destination. I’d prefer just to hurry up and get there so I can jump in the pool 😉 .