The H2 experiment

I’ve had significant GERD (gastroesophageal reflux disorder) for about 10 years, although the first few years were ‘silent’ GERD with no wind or belching and back pain rather than breastbone pain , so it wasn’t picked up on.  The biggest problem I had was a dry, unproductive  cough which at the time was put down to all sorts of things (asthma, infection, allergy) before we realised it was acid reflux being inhaled into my lungs.  I’ve had all the usual tests, including an endoscopy, and nothing much was found other than several benign stomach polyps and a shed load of inflammation, so I was diagnosed with Gastritis.  Gastritis and GERD are common in Ehlers-Danlos as the sphincter which holds food in our stomachs becomes lax causing stomach acid to flow back up the oesophagus, and our bowels tend to be sluggish which causes our food to sit in our stomachs longer than it should causing inflammation.  The drug Domperidome is commonly used to speed up stomach emptying in EDS, but of course I’m allergic to it (it’s one of the drugs which give me Oculogyric Crisis).

To compound the problem, MCAD causes excess acid to be produced from the mast cells in our stomachs, so I’m in the middle of a perfect storm.  One of the first drugs to be given to MCAD patients are H2 antagonists (eg. Zantac, Pepcid), which target the mast cells in the stomach and stops them from producing so much acid.  I was told about 2 years ago I should be on Zantac but have just been too petrified to try it due to the way I react to medication.  Instead I’ve been sleeping with my bedhead raised off the ground to stop acid leaking back into my gullet at night, and taking Gaviscon Advance, which neutralizes the acid and creates a foam barrier across the top of the stomach to stop the contents leaking back into the oesophagus.  It helps a bit, though I do still have heartburn and the pain really gets me down.

It became so bad recently that in desperation I asked my GP for a Zantac prescription (though I always use liquids rather than tablets, as I can then take a teensy tiny dose and work my way up to a full one) and have been trialling it for the past 3 weeks.  The miraculous news is that I can tolerate the Zantac and have had no reactions to it.  The bad news is it’s made my heartburn much, much worse, so much so that I had to stop taking it 3 days ago and revert back to Gaviscon, and thankfully the heartburn is now settling back down again.

This is why I’m in no way religious.  I’m a good person.  Never done a thing wrong my whole life (oh, except to be caught going 7mph over the speed limit downhill on the motorway, and putting the wrong time on the disc on my car and incurring a parking ticket).  I’m a loyal friend.  An extremely good daughter.  I’ve taken in rescue animals my entire life.  And, despite being too ill to do full-time paid work for some time, have always done volunteer work from my bed.  Yet I get not one, not two, but three little known, under-researched and disbelieved diseases where I’m ignored by the medical profession and basically left to rot.  To add insult to injury I’m allergic to any drug which might help, and am too sick to do physical therapy.  And every time I’m given a glimmer of hope that something might help my symptoms (ie being able to tolerate the Zantac) it’s taken away again (ie the Zantac not only doesn’t help, it actually makes the situation worse).  There is no ‘higher power’ folks – we’re on our own.  p.s. please, please don’t leave me comments about God or about being positive or I might have to kick you!!!

I’m going to ask my GP for a prescription for Pepcid, another H2 antagonist which works in a slightly different way to Zantac.  Then of course I have to start the whole trial again, petrified every day I’m going to go into shock or have an awful reaction which puts me in bed for months.  There are times I seriously hate my shitty life and wished they sold new ones at Tesco (let’s face it, they sell everything else!).

Before I sign off, I’ve added yet another new recipe to the site.  We’re heading into Autumn here in the UK so I thought I do a recipe for stodgy but warming Quorn Cobbler & Dumplings.  See the Main Course section of the Recipe page and scroll down for details.

Photo of Quorn Cobbler

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8 thoughts on “The H2 experiment

  1. Patrice

    Dear Bertie..or me,

    I can certainly agree that life with a mast cell disorder is quite shitty and yet…. there are a few positive things that have happened in my life because of this shitty disorder and I actually feel happy most days so I thought I would reach across the pond and offer my hand to help you climb out of your dismal mood and maybe your bed.

    I’d like to invite you come over to the http://www.inspire.com site where many of us masto people post under the orphan disease group and some in the asthma group. I can’t say enough for how the sharing of our symptoms and advice and e-friendship has brought a greater sense of happiness and satisfaction to what was the isolated and misunderstood situation I found myself in. There is nothing worse than looking fine on the outside and having lab tests results that are normal yet being SO sick on the inside…at least if we lost our hair or turned an odd shade of green people would have a bit of pity and maybe bring us a cookie or two or let us go to the front of the line at the public loo….lol

    I would so appreciate it if you would post this info about the GERD in the forum because so many people have the coughing and don’t know what it is and are frightened and frustrated. I don’t have this particular symptom so I can’t offer any advice to anyone who does but I learned a lot from your post and I think many others would too. You have years of knowledge that could be helping the many new people who find us because they are struggling to figure out what is wrong..many people would benefit from your insights and experiences. And in turn, you might learn things from some of us..if nothing else you will make new friends who are in the same masto boat.

    My name at Inspire is RoughCollie…looking forward to seeing you there. Sending a BIG American hug your way..RC

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    1. bertieandme Post author

      Hi Patrice

      I appreciate the hug, thanks :-). I’m actually already on Inspire, but on the EDS forum. Can I be honest and say I struggle with American forums? We’re culturally very different and one of the reasons I started my blog was so that I could be myself: whinging, swearing, God-less, sarcastic, ironic and……well…..British, without offending my American forum friends. I also struggle with the differences in health care – trust me when I say yours is superior to ours in every way which makes me even more frustrated about how things are here in the UK. If you want to post a link to my blog on there though feel free – it’s already been ‘advertised’ for want of a better word on the EDS forum x

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  2. dotslady

    As a Canadian-American I appreciate the Brits. You won’t offend me; I find you refreshing, and I love your vocabulary. Anyway, I only wanted to mention that I had horrid GERD and thought it was from lack of or low stomach acid. I take HCL pills with larger meals now. I also juice green leafies w/an apple or some other low histamine fruit (alkaline) vs eating acid foods (meat, grains, legumes, dairy). If I eat more alkaline than acid, I’m fine – no drugs, no tilted bed, no GERD. Have you had your stomach acid level tested with a Heidelberg test? I haven’t. I just tried the HCL test to find the right amount. http://bit.ly/TUMSGott, http://bit.ly/Myhillhypo

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  3. Laurie

    I understand your frustration, I used to get fequent lung infections due to acid in my lungs. I had a Nissen fundiplication and it helped me so much to keep the acid out, I now have discovered why I needed surgery in the first place, EDS. My Mom suffered for 10 years with an undiagnosed illness, which I know know that it was partly EDS, she died unexspectedly the day after Christmas. Do not give up, there is always a way, miserable at times but we have to fight.

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    1. bertieandme Post author

      Thanks for taking the time to comment Laurie. Glad you finally got to the bottom of your issues. I have to try all available drugs before going back to the consultant re my GERD – no way they’d consider surgery unless the drug route is exhausted. But you’re right, severe reflux is miserable! x

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