The H2 experiment part3

I’ve now been on Tagamet (cimetidine) for a month for my severe GERD and I have to say……….it’s not bloody helping.  I have a constant pain in the middle of my breastbone, which goes right through to my back, between my shoulder blades and runs down the top outside of both arms.  I also constantly feel like something is stuck in my oesophagus and when I swallow it’s like I have to go past whatever this is.  I also still feel sick almost all the time and have the most disgusting taste in my mouth 24/7.  My breathing is also affected and I feel like I have a brick sitting in the middle of my chest every second of the day which at times can be a bit scary.  I also spend the whole day burping, which I never did before I started taking the Tagamet (despite everything going on in my digestive tract I’ve thankfully never suffered from wind in any direction!).

I upped the dosage of Tagamet to 4 tablets per day (800mg in total), plus I’m also still taking double strength Gavison liquid before I go to bed, and sometimes during the day as well (making sure to take it a good 90 mins after the Tagamet as they can interfere with each other).  Surely to goodness all these drugs should be doing *something*?!

I had an MRI scan and an endoscopy last April and neither showed a hernia.  But my symptoms have worsened since then, and I’m convinced I either have a hiatal hernia or my sphincter muscle is so weak from my Ehlers-Danlos that it’s not closing properly and my stomach is coming out into my gullet.  I’ve made an appointment to see my GP on 6th November and will ask to be re-referred to the Gastroenterologist at my local hospital (not that I have any faith in him, as my hospital is under Special Measures due to the fact they tend to kill people unnecessarily!).  The thought of having another endoscopy fills me with absolute dread it has to be said – surely that’s one of the most horrendous tests to ever have to go through (I’d love to ask for sedation, but am allergic to the sedatives!).  The last one I had done also resulted in my throat swelling due to my dermographism and the force they have to use to get the scope down.  Joy!

I am gutted that I am actually tolerating a medication for the first time in 8 years but it’s doing diddly squat to control my symptoms.  Mr Sod seems to live at my house!!

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7 thoughts on “The H2 experiment part3

  1. jane

    hi there – i’m sorry it’s not giving you any relief. any chance a ppi, instead of an h2 blocker, could work for you, like nexium or prilosec?

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    1. bertieandme Post author

      Thanks for the suggestion Jane 🙂 I’m a bit nervous about going on PPIs in that they reduce stomach acid by 80% – what digests your food if you’ve hardly any stomach acid left? But I’ll probably end up trying a PPI while I wait 6 months on the NHS to see the Gastroenterologist again – whether I’ll be able to tolerate it with my drug history is another question entirely. I’m so over the whole stomach thing now 😦

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      1. jane

        it’s so hard doing all the different trials of meds and diet choices, etc – grrr. just a quick thought, because i’m running out soon – since you have such pain, is there a chance that a protective barrier-type med, like sucralfate, as opposed to or in addition to, an acid reducer/blocker, might help? (i haven’t looked this up – i just saw a quick reference to it as a sort of protective barrier against ulcers.) also, does anyone ever do a ppi and an h2blocker together, as they sometimes do with antihistamines? have you been tested for h pylori (maybe even more than once, as it can be falsely negative)?

        when i had gerd, it was more respiratory in nature, with a chemical taste in my mouth, shortness of breath, and a raw feeling with a bit of pain from mouth to lungs. i used one of those medical gerd pillows for some months, which helped a lot – i think you have the head of your bed elevated? i took prilosec and did quite a bit better, and then took too much and felt worse, and ultimately stopped. possibly watching my diet helped the most – i went through so many diets til i found what foods were bad for my gerd. corn was my biggest offender. i’m now free of it, unless i eat certain foods.

        i surely hope you can work this all out – an egd sounds absolutely barbaric without anesthetics. when i had mine, they used fentanyl with something else that i can’t remember just now, and did well – phew. i’m sure you’ve seen these: (http://www.rcoa.ac.uk/system/files/PI-MASTOCYTOSIS-2011.pdf) and (http://www.tmsforacure.org/media/gouldn_anesthesia.pdf). again, i haven’t read them, but thought they might carry food for thought, since you’re a good researcher.

        i really hope you can get to the bottom of this, so you can feel better soon 🙂

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        1. bertieandme Post author

          Thanks so much for taking the time to send me this info Jane, it’s much appreciated. Are you in the USA? Only in the UK we routinely do Endoscopies without any kind of anaesthesia (in fact we never use anaesthesia, only very short acting mild sedation). All they do is spray the back of your throat with local anaesthetic and off they go – it’s truly horrendous!

          I’ve reacted to all sedatives (eg. all the ‘pams’, like diazepam) in the past, as well as a general anaesthetic, so it’s just not an option for me unless it was for life saving surgery.

          Yes I’ve been tested for h-pylori and am negative. Also negative for Coeliac.

          I can’t pinpoint any food which makes my GERD worse. I have it 24/7. It’s actually worse when I have an empty stomach or am hungry, and is often best for the 30 mins after I’ve eaten a meal. As I said in my blog post, I’m certain I have either a hernia or sphincter issue – I already have a very weak ileocecal valve lower down in my intestines which causes all sorts of havoc. Could be 6 months before I get to see the Gastroenterologist though *sigh*.

          EDS can cause just about every problem known to man within the GI tract – I at least count myself lucky I’m not on a PICC line or living off liquids like some of my friends x

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  2. jane

    woah, just a local anesthetic spray. you all have my deepest respect! yes, i’m in the u.s. – i’m one of the very, very lucky ones on medicare.

    a diet offender is really hard to suss – honestly, it took me four years just to (sort of) figure out that part, but i’m not complaining, because that’s what finally put me on the mast cell disorder trail. you could easily be right re your eds causing a problem with the esophageal sphincter. i wonder then about protecting against further damage to your esophagus til you see the gi specialist. would gastrocrom help?

    please excuse this next bit – i just looked at your very helpful grocery list, and i wonder what would happen if you eliminated each one of the following entirely, one at a time, for like a week each: vitamins (the only cereals that i can eat are oatmeal and kashi “shredded wheat,” because they have no vitamins added to them – i’ve read that esp b vitamins are made from molds/yeast), rice dream “milk,” honey, molasses, treacle?, hydrolyzed veg protein (can be soy- or corn-based), most spices/herbs, nuts, peas, pomegranates, sweet potatoes, peppermint. and quorn is a fungus – so essentially a yeast? and fruit usually is high in histamine.

    you’ve probably gone through all this rigamarole already – wish i could remember from some of your older posts. sorry to be annoying, and i definitely know that we’re all different and that, of the myriad low-histamine foods lists, many are pretty weird and working on unfounded information. i just hate to see you suffering so badly and for so long.

    i’m sending some good thoughts and luck your way 🙂

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      1. Jak Post author

        I suspected that too mary, but nothing showed up on my first endoscopy, I don’t have vomiting, lack of appetite or issues with swallowing and my skin prick allergy tests were negative, so now I’m less sure. I’m having another endoscopy in the next few weeks and am specifically asking them to test for mast cells using a blue stain so we’ll see what that shows. Jak

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