Tag Archives: Reflux

Weekly Roundup

This week found me back at my GPs surgery (after a month long wait for an appointment!) for a prescription for a Proton Pump Inhibitor (PPI) called Omeprazole.  My continuing painful reflux is getting me down and I’m now desperate enough to want to try a new drug.  The good news is that if I react badly to it I have the option of increasing my H2 blocker Tagamet, so all is not lost.  I do have a reaction every time I take a Tagamet tablet (which is 3 times a day) but thankfully so far it’s calmed down after about 30 mins and it’s the price I have to pay to keep my stomach acid in check.  I just wish I didn’t have to take any drugs at all as I am now so phobic about meds it’s a daily battle not to be petrified every time I put a tablet in my mouth (for those unaware of my reactions, I can take a drug for years and then suddenly become allergic all out of the blue so taking any drug is simply a game of Russian Roulette).

I’m also facing the start of root canal treatment on a back molar on Monday, so am looking forward to that like a hole in the head.  If it goes badly I’m just going to have the tooth pulled and put up with the gap, which thankfully is right at the back so shouldn’t be visible but might impact on how well I can chew!

I’ve had a bad week for migrainy heads, currently being on day 3 of a thumper.  I’m not sure whether it’s a migraine or just a crappy headache, which feels like it’s right at the centre of my brain.  It’s making me quite nauseous though, so maybe it is a migraine.  My nose is also really stuffy and my sinuses are sore, so maybe it’s pollen related being as though the weather is nice.  Whatever the cause I’m now ready for it to jog on.

Yesterday we had a rare sunny, warm spring day here in the north of England so my Dad, my dog and I went to a local bluebell wood where the flowers are all currently in bloom.  My dad dropped me off with my camera, so that I could take some photos for an hour, while he carried on walking with Bertie.  The forest was spectacular and the few snaps I managed to get in the short space of time can’t possibly do it justice – it was worth going for the scent alone :-)  I had a fabulous time………….until I slipped, put my hand out to save myself, bent 2 fingers right back and managed to sprain them and strain my wrist joint – what a clutz!  My finger is now incredibly painful and strapped up, which is making typing this tricky.  It was still worth it though to see one of nature’s most beautiful sights :-)

Photo of bluebell wood Cumbria

Photo of Miniature schnauzer in bluebells

 

 

Oesophageal pain

As I’ve mentioned in several recent blog posts my reflux seems to’ve gotten out of hand lately for reasons I can’t put my finger on.  I have constant pain where my oesophagus meets my stomach, a bit like I have a sharp piece of toast stuck.  The pain radiates to my back and goes up either side of my spine from my lower shoulder blades right up to the base of my neck.  It’s a stinging pain which nothing seems to alleviate.  When it’s really bad I also get burning, stinging pain down the outside of both arms right down to the elbows.  Thankfully I don’t have any stomach pain, but eating is no fun.  Drinking or eating anything warm is acutely painful and I’m fairly sure my oesophagus is inflamed or ulcerated.

Unbeknown to me, I had silent reflux for several years which resulted in acid being inhaled into my lungs giving me a chronic cough which was mis-diagnosed as allergic asthma.  Then in April 2012 my stomach really started playing up.  I had an endoscopy that year which showed very little, other than a dozen benign stomach polyps and some inflammation.  It was decided I had GERD and I was placed on an H2 anti-histamine (originally Zantac which gave me awful nausea and brain fog, so I switched to Tagamet which I tolerate really well).  It reduced the heartburn and upper epi-gastric/back/arm pain but didn’t cure it.

I’ve now followed all the usual recommendations for GERD for nearly 2 years:

  • My bed head is raised on 4″ bricks.
  • I leave 3 hours after eating my dinner in an evening before lying down.
  • Most of the foods to avoid on an acid reducing diet are things I can’t eat on a low histamine diet in any event, eg. tomatoes, alcohol, most spices, citrus fruits, fizzy drinks.
  • I’ve never smoked.
  • I’m normal weight for my height and build at 8st 4lbs (117lbs/53kgs).
  • I eat 3 small meals a day, and 2 snacks inbetween.

In addition I’ve increased to the maximum dose of Tagamet (4 x tablets per day) and inbetween doses I take Gaviscon Advance which means I take acid suppressing drugs every 2 hours.  Yet the pain just gets worse and my chest tightness and chronic cough are back.

The next step would be to take a proton pump inhibitor (PPI) like Omeprazole, but I’m reluctant for 3 reasons:

  1. I probably won’t be able to tolerate it.
  2. The Tagamet I’m on currently is one of the drugs recommended for Mast Cell Disease being an anti-histamine, so is preferable to a PPI which has no action on stomach mast cells.
  3. I’m only 46 years old and PPIs are the last drug left for me to try.  If the pain gets worse in 10 years time I’ve no drug options left.

Nothing I eat makes it worse or better and the pain is so acute when I lie down (even sleeping on a slope!) that it’s kept me awake at night for weeks.  Consequently I’m getting more and more tired and miserable, leaving aside the fact that long-term reflux puts me at risk for Barrett’s Oesophagus and ultimately cancer.

I can’t get an appointment to see my GP until 14th May, when I’ll ask for a referral back to see the hospital Gastroenterologist.  I will then have to wait about 4 months just for an appointment.  I’m dreading having to have another endoscopy if I’m honest, as my last one had to be done without sedation (I’m allergic) and the force used to get the camera down set off my dermographism and later that night my throat was so swollen I had to ring the out of hours doctor.  However, if I do end up having another scope at least I now know about my mast cell issues and can ask for some samples to be taken for staining.  In the meantime I guess I’ll have to at least try a PPI because at times I don’t feel like I can live with the pain for another second.  I wish sometimes The Powers That Be, and my body, would just cut me some slack and give me a break and some time off.

Keep your eye on it!

I haven’t felt very well the past few days.  Correction, I’ve felt crappier than usual the past few days ;-) .  The Birch pollen season has begun, so I’ve been sneezing my head off and my eyes are dry and sore, although this year I know to keep all my windows shut, run the air purifier in my bedroom, always wear my glasses when outside and put some Hay Max organic balm around the inside of my nostrils before I venture outside which seems to work quite well.

But I’ve also been really muzzy headed, have had a sore throat and just felt generally drained and ‘not right’.  My chest is also worryingly tight (although I bought a peak flow metre and my readings are excellent at 550) and I’m coughing my head off.  It could be related to the pollen, but at the same time I’ve had reflux pain so it could also be a bad bout of GERD.  I’m already on the maximum dose of Tagamet (H2 blocker), plus extra Gaviscon Advance especially before bed, but it’s obviously not keeping the acid at bay.  I tolerate the H2 so well that I’m extremely reluctant to try a PPI instead, although if it gets much worse I might have to.  So I’m wondering if the sore throat is from the reflux and coughing, or whether I do have some kind of mild throat infection particularly as I don’t feel ‘well’ (although my temperature is normal).  My step-brother gets bad hayfever though, and he doesn’t feel well at the moment either, so it could also be the pollen!

That’s the problem when you have M.E. – every day you feel like you have the Plague, so how can you tell when you actually do have a virus?  Or whether your increased symptoms are down to something else entirely, like hayfever or an MCAD flare?  Or whether you’re just having a crap M.E. patch?  Answers on a postcard please.

I gave up going to see my GP about anything about 10 years ago.  She would either hand me a prescription that I couldn’t take, or refer me for tests which always came back normal.  All the visits ever did was make me feel like a hypochondriac which wasn’t good for my psyche.  But there are some symptoms I really worry about, like my lower stomach/pelvic pain which has been particularly bad in recent months.  I am 110% convinced the pain is down to endometriosis, but what if it’s something more sinister?  I have regular smear tests but that wouldn’t pick up ovarian cysts or internal tumours.  About 5 years ago I actually think I had a burst ovarian cyst (I’ve never had pain like that in my life) but I still didn’t call an ambulance – by morning it had settled down a bit and I’m still here so whatever it was it didn’t kill me!  There’s a saying in my family to “just keep your eye on it” – with everything that’s wrong with me it’s a wonder I can see straight ;-) .

The only time I’ve been to hospital was after I’d had a mast cell reaction to having chiropracty for my back.  Within 5 minutes of the treatment I knew I was going to be really ill.  And I was, including having tachycardia for 3 entire weeks and horrendous vomiting/retching.  After 21 days of continuous symptoms (including losing 9lbs puking) and absolutely zero sleep, I had chest pain so bad it felt like I was being skewered by a bread knife.  So at 3am one night I called 111 (the non-emergency number) and was told I had to call an ambulance.  I said I didn’t want to, I’d be fine, but the Doctor on the other end disagreed and called one anyway!  I ended up being blue-lighted to hospital, only for my ECG to be considered ‘normal’ (I knew I was having an allergic reaction and that there would be nothing wrong with my heart) and discharged 5 hours later in the snow, in my pyjamas and with no way of making the 30 mile journey home (a taxi would have cost me £80!).  It’s not going to happen again in a hurry.

I might try some Claritin (H1 blocker) alongside my Tagamet to see if that will settle any hayfever symptoms down (although it gives me insomnia!) but other than that I’ll just put up with the tight chest.  It does get me down though, as breathing is exhausting when it feels like there’s an elephant sitting on your breastbone!

I am, however, going to finish on a high note.  I’ve had the biopsy results for the lump on my little dog’s leg and it’s just a benign cyst and nothing at all to worry about, yayyy :-) .  And my Mum is definitely brighter now we’ve altered her medication – like her GP says, it’s a balance between quality of life and quantity of life.  If I had a choice, I’d rather be well and die at 60 than feel like this every day and live til I’m 100!

The Gluten-free Experiment

I’ve now been gluten-free (yes, I’ve been strict!) for over a month.  It hasn’t been difficult at all and certainly nowhere near as challenging as going low histamine.   I’ve substituted Doves gluten-free flour mix for normal flour in recipes and it’s worked really well.  You can buy gluten-free pasta and cereal in all supermarkets now, and I’ve been baking my own yeast-free gluten-free bread.  Many of the commercial products containing gluten, eg. sauces, biscuits, cakes, I’ve been avoiding in any event as they have ingredients not allowed on the low histamine diet.

Despite my best efforts I’m sad to report I don’t feel any different whatsoever (with the exception of one symptom – see below).  This may come as a shock to all those who tell me gluten is ruining my life, but it comes as no shock to me being as though I’ve tried a gluten-free diet twice before and it didn’t help then either.

I’m sleeping appallingly, consequently I’m so exhausted I can barely function.  I have hives, I am itching, I am sneezing my head off.  I have stomach pain, and back pain, and really bad brain fog.  My bowels are unchanged.  I have nausea, I have throat weakness and I have had 3 migraines this month (which is more than normal).  Honestly guys, I feel just the same.

The exception being that my heartburn is much reduced!  However, before we all get too exited I started on Zirtek (H1 anti-histamine) at the same time as I started the gluten-free diet.  I’m also doing hiatal hernia massage daily.  So out of the three, I’ve no idea which it is that’s helping (yes, I know I should only do one thing at a time, but I needed a good trial of the Zirtek before I go back to see the Consultant next month).

My gluten-free experiment is up at the end of November, so I will switch back to eating gluten.  If the reflux gets worse, I know it’s the gluten.  If it doesn’t, then gluten isn’t a problem.  And before you all say that 6 weeks isn’t long enough to see a change, I’ve done gluten-free before: 6 months the first time and 3 months the second time.  I didn’t see any change then either.  When I started the low histamine diet, however, I noticed a change within the first week.

My good friend K has had M.E. for over 12 years now.  She found out by accident she was Coeliac following a routine blood test about 8 years ago (followed by the usual biopsies), so consequently she has to follow a very strict gluten-free diet.  I asked her if she had noticed any improvement in the symptoms of her M.E. and she said no.  None whatsoever.  I know gluten is an issue for some people, but it’s not at the root of every disease known to man and I wish the gluten zealots would accept this.

For me, the jury is still out as to whether avoiding gluten is helping my reflux, but as for anything else it’s a dud I’m afraid.  In fact, I’ve felt absolutely rubbish during November and have had the least energy I’ve had all year :-(  Trust me when I say I was hoping with all my heart that avoiding gluten would make me feel like a new woman, and I’m more bummed than anyone that it hasn’t turned out that way.  Onwards and upwards.

What I did discover in my gluten-free quest was a really good pizza base flour mix.  It’s made by Isabels and is also yeast-free.  You buy it as a packet flour mix ( sorry, it does contain milk powder for those who avoid dairy) and you mix it with egg, oil and water, knead it, roll it thinly, pre-bake it for 10 mins, add your pizza topping, and then bake for another 10 minutes.  It makes a thin crust pizza and you get about four 9″ pizzas out of one box (containing 2 packet mixes).  I used one box, ate one pizza fresh, rolled out the other 3 and froze them.  You can then just bake straight from the freezer.  The only mistake I made was rolling out the bases too thinly and next time I’ll do them slightly thicker.  For the topping I used my red pepper sauce, fresh mozzarella cheese and veg.  I’ll put the details up on the recipe page when I have time – it’s available to buy from select ASDA and Booths stores or online at Amazon.

Photo of gluten-free yeast-free pizza

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

Hernia

I saw my GP a couple of days ago to discuss my continuing reflux, breathing issues and cough.  When I described my symptoms, in particular the feeling that I have a piece of sharp toast constantly lodged at the bottom of my oesophagus, she said I’ve almost certainly developed a hiatal hernia due to my faulty collagen making the sphincter to my stomach weak, which is what I’d already concluded myself (hernias of all descriptions are very common in EDS).  Part of my stomach is pushing up through my diaphragm and into my gullet allowing my stomach contents, including acid, to reach places it wasn’t intended to.

She said I could go for an endoscopy to confirm, but the thought of having another tube down to my stomach without any kind of sedation, as the drugs set off my mast cells, isn’t appealing.  There’s also the fact that, due to my pressure dermographism and the force used to get the scope down, the last one caused my throat to swell to scary levels.  I asked her if the treatment would be any different if I had a confirmed hernia diagnosis and she said no.  Suffice to say I declined the scope.

She wants to switch me from my current H2 blocker to a PPI (proton-pump inhibitor).  I resisted for several reasons:

  • Due to my horrendous drug reactions it’s nothing short of a miracle I’m tolerating the H2 anti-histamine.  I really feel I’d be pushing my luck trying a PPI.
  • PPIs cut stomach acid by 80%.  There is, therefore, hardly any acid with which to digest food.  This can lead to nutrient deficiencies, and in extreme cases malnutrition.  Due to my EDS I already have slow GI transit – taking something which would probably make that worse doesn’t seem wise.
  • Even if tolerated, PPIs can have some wicked side effects.  I should know, as both my parents are on them (my Mum having had GI issues for years probably due to undiagnosed EDS).
  • I’m only 46 years old.  The thought of living on PPIs for the next 40 years isn’t appealing.

However, we both agreed that having stomach acid leaking into my lungs can’t be doing a whole lot of good.  I’m already on 4 Tagamet tablets a day, so can’t really increase those.  I also take Gavison before bed, and have my bed-head raised 6″ off the floor.  The only thing she could suggest is giving me co-magaldrox which coats the stomach and gullet to stop acid from burning so much.  It’s a bit of a sticking plaster over a gaping wound but I’m not sure what my other options are.

You can have surgery to correct a hernia, but it’s not always successful.  It’s also a big operation and considering I react very badly to anaesthetic, and can’t tolerate any kind of pain-killers, isn’t something I’m desperate enough to consider just yet.  I may, however, end up on the PPIs as living with this kind of constant pain, cough and the feeling that Nelly the Elephant has taken up permanent residence on my chest is very wearing, not only physically but emotionally.

I’m not well enough to work, but volunteer from my bed when I can (which I treasure as it’s not something I’ve always been well enough to do).  I produce my Church newsletter each month (which goes out to 7 parishes) despite not being religious myself; am a volunteer board member of the 25% ME Group, a UK charity which solely supports people with severe M.E. (as against the wider disease Chronic Fatigue Syndrome); and crochet blanket squares and garments for AIDS orphans in Africa through Knit-a-square when my hands will let me.  Having not had much help and support throughout my own life, and particularly while I’ve been ill, it’s doubly important to me that other people not feel abandoned, alone or isolated and this is my chance to help in a teensy tiny way.  As Oprah would say: pass it on x

Photo of crocheted children's vests

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!!