Tag Archives: total drug allergy

Post Reaction Stress Disorder

Anyone who has MCAD will understand the title of this blog post.  I refrained from using the term ‘Post Traumatic Stress Disorder’ because it’s a very serious mental health issue and I don’t have it, but I’m close.

I am phobic about taking drugs, or even trying new foods or drinks.  Truly phobic.  I only have to think about taking a drug and I get palpitations, my whole body feels weak, I feel nauseous and my anxiety level goes through the ceiling.  You might as well ask me to put my hand in a fire.  It’s become so bad that I have a panic attack giving drugs and supplements to my dog, even though he’s never had a bad reaction to anything in his life.

I had my first drug reaction when I was 16 years old, had my first truly allergic drug reaction when I was just 17 years old – y’know, the scary kind where you can’t breathe – and I’ve been having them ever since.  I’ve now had going on two dozen drug reactions and I don’t want another one in my life.  Ever.

The thing I can’t get anyone, including Doctors (particularly Doctors) to understand is that the reaction doesn’t stop when the drug (or whatever has caused the reaction) is out of my system.  Oh, how I wish it did.  My body instead seems to get stuck in the reaction and can stay there for days, weeks, months.  It makes sense when you think about it – mast cell activation perpetuates/causes further mast cell activation – round and round it goes until something breaks the cycle, which for most people is Benedryl or steroids or other anti-histamine drugs but of course I’m allergic to all of those so breaking the cycle for me is nigh on impossible.

Just so’s my readers know, I will never try a drug, supplement, herb or treatment that you kindly recommend and which has helped you. I was bedridden for 3 months after trying osteopathy.  I had to be blue lighted to hospital via ambulance at 3am after one five minute chiropracty appointment and was so ill for the next 9 months I had to go live with my parents.  I pulled acupuncture needles out of my skin myself after the therapist left me alone for a 10 minute treatment and I could feel anaphylaxis coming on.  I spent the night (and the following 4 days) pacing the floor, puking and wanting to tear my skin off after drinking a cup of herbal tea containing hops and valarian.  And I haven’t even mentioned my drug reactions yet, which are so severe I honestly can’t bear to even write about them, or food (I’ve been trying to pluck up the courage to try a cup of camomile tea for about 2 years now and still haven’t managed it).

The blase attitude of Doctors to my drug reactions staggers me.  They write me a prescription then send me home, where I live alone miles from anywhere, to take the drug and have a potentially fatal anaphylactic reaction with no backup plan (I don’t even possess an epi pen and would be too terrified to use it in any event in case it made my reaction worse!).  It’s outrageous.  Any new drug I try should be done in hospital under medical supervision – anything else is negligent.

I am genuinely pleased when a drug, herb, supplement or treatment has helped one of my readers.  However, to tell me about it is a bit like saying to a man with a peanut allergy “peanuts cured me, you should try them”.  It’s kind’ve insensitive. If you’d been bitten by a dog 20 times you be pretty wary of dogs.  There will always be owners who come along and say “oh my dog is lovely, he’d never bite you”, so you trust them, go to stroke the dog and the little fucker bites your finger off.  The owner walks away muttering “well he’s never bitten me or anyone else I know!” like him biting you is somehow your fault and you’re the one left having to live with only 9 fingers.

I am the most drug allergic person I know probably anywhere in the world and by drugs I also mean herbs and supplements.  If I can react badly to eating an organic apple which is a totally natural product you can bet I can react badly to just about anything.

I don’t mean to sound whiney or ungrateful to the suggestions put forward by people who are only trying to be kind and helpful.  But I just wish sometimes there was a little more thought and understanding for my situation.  I want more than anything to improve my health – I’ve spent more than two decades trying to control my symptoms and everything I’ve tried (bar a low histamine diet) has made the situation ten times worse sometimes to the point of almost killing me.  I gave up stroking dogs, even those who are “friendly and wouldn’t hurt a fly” and now just keep a wary and sensible distance.

 

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Keep taking the pills…

….. or in my case, and many other people’s cases, maybe not.  My friend Elizabeth Milo has had a thread on her Facebook page about drug allergies alongside a photo of the legion of pills she’s tried and had a bad reaction to, and she’s not alone.  I myself have had two dozen drug reactions that have scared me to such an extend that I’m now completely phobic about trying a new tablet, supplement, topical lotion or even herb.  While I’ve thankfully never had full on anaphylaxis, I have had a Grade 3 anaphylactic reaction which lasted for every second of three entire weeks, and took me another six months to get over.  When I react to drugs it isn’t just a case of feeling rough for a couple of hours and then getting back to normal.

When I first began my journey of looking into my reactions I could find virtually nothing online about total drug allergy.  Even within the Mastocytosis population there is a list of drugs you’re supposed to react to and a list which is supposed to be safe.  I couldn’t relate, because I react to everything.  Even things I’ve been told it’s impossible to react to, like B12 supplements, hops in a herbal teabag and all the drugs used to treat anaphylaxis like steroids and antihistamines.

For me, it’s been the worst aspect of having MCAD.  The look of utter disbelief on every doctor’s face I’ve ever encountered and the, sometimes not even veiled, suggestion that it’s impossible to be allergic to all drugs therefore my symptoms are psychosomatic and I probably should be in the therapist’s office rather than the allergic clinic has been a common experience.  Even Doctor Seneviratne, the leading MCAD Consultant in the UK, told me at my appointment that Sodium Chromoglycate is one of the safest drugs around and he was certain I wouldn’t react to it, yet I knew that many of my friends had tried it and it had made them horrendously ill.

Once I finally found the MCAD population online I discovered hundreds of people like me whose bodies have a particular love of reacting badly to drugs and supplements, and it was incredibly validating to know I wasn’t alone or bonkers which is how I’d felt for the previous 15 odd years.

I don’t know why Consultants find it so hard to get their heads around multiple drug allergies.  They accept you can react to just about every food or environmental stimulant known to man, but drugs………..ah, don’t be daft!  Sitting in a doctor’s office, telling them about your last horrendous drug reaction and being offered, you guessed it, yet another drug to try is soul destroying.  I know doctors can’t ‘fix’ me, but it would be nice to simply have my reactions recognized and taken seriously – after all, one day they could kill me.

They also can’t get their heads around the reactions not being dose dependent.  It’s widely known that people with, for example, a peanut allergy don’t need to eat an entire peanut to have anaphylaxis – just the mere trace of peanut oil will do the trick.  But doctors don’t seem to understand that this applies to drug allergies too.  I can have the same reaction to putting a tiny bit of paracetomol on the end of my tongue as I do to swallowing a whole pill, but will doctors accept this?  That would be a big fat no.  The reason they don’t accept it is that they don’t accept I’m having an allergic reaction, and my multiple drug allergies are down on my file as “multiple drug sensitivities“.  I am not sensitive, I am allergic and while I accept my MCAD reactions aren’t caused by an IgE reaction my anaphylaxis is nonetheless real – my allergies are allergies, they’re just triggered differently.

The lack of care for people with multiple drug allergies is scandalous.  If you are known to have anaphylaxis and are offered a new drug to try it should be done in hospital, under medical supervision – you absolutely should not be sent home, alone, to just get on with it.

How do we get the problem with total drug allergy through to Doctors?  I wish I knew.  And are any of our reactions being reported to drug companies or the authorities?  Hell no!  There are no figures being kept of our reactions to all these medications, which is another scandal.

I accept that MCAD is a newly emerging disease, however it’s been recognized for a decade now but it’s still not accepted by the World Health Organization or our Health Department.  When is this going to change?  When is the full extent of MCAD going to be realized and treated?  I’m sick and I’m impatient and my life may just depend on some recognition.

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.

When Fears Come True

As anyone who’s read my blog will know, my biggest mast cell reaction is to drugs.  There is barely a single drug I can tolerate: from aspirin to valium, anti-emetics to steroids I’ve had anaphylactoid reactions to them all (if you want to know what my reactions are like read this post).

Due to my mast cell disease, and a hiatal hernia due to my Ehlers-Danlos, I have rampant GERD.  And I mean rampant.  To the point where the acid burns my oesophagus and causes ulcers, and I inhale it into my lungs and give myself walking pneumonia.  The pain of severe GERD is like nothing on earth.  To be burned with acid from the inside is not fun.  The pain in my back gets so bad I can’t sit upright and it radiates down both arms to my elbows.  My throat and mouth also become burned and the taste is so vile I can barely stand it.  I feel like my entire upper torso is on fire.  And before anyone tells me to stop eating gluten or dairy because it cured their reflux PLEASE don’t – I’m liable to tell you to shut the fuck up, you have been warned.  Not eating wheat will not cure my hernia, which is due to shitty collagen rendering my oesophageal sphincter defunct.

To control my reflux I have been able to take Cimetidine, an H2 antihistamine which blocks stomach acid.  I tried Zantac, the first drug of choice, but it didn’t agree with me and gave me awful brain fog (worse than usual, and it’s already bad enough).  But I’ve been taking 4 tablets of Cimetidine daily for the past 18 months and it’s kep the GERD at bay.  Until this week.

I knew that, eventually, I’d become allergic to the Cimetidine.  It’s been my biggest fear.  I become allergic to any drug I take over the long term.

I’ve been having small reactions after taking the Cimetidine for about a month now (pins & needles in my bum, crampy stomach) and just ignoring them, hoping they’d go away.  They didn’t.  They escalated on Monday to an all out anaphylactic reaction, with a heart rate of 125 and a bp of 145/75 (my usual bp is 118/55).  I gave it a miss for a couple of days, hoping things would calm down but no such luck.  I can no longer take the Cimetidine.

Ages ago, my GP had given me a Proton Pump Inhibitor to try – Omeprazole.  I still had it, and it was still in date, so this morning I gave it a try.  Just a teeny tiny bit on the end of my tongue – what harm could that do?  Anaphylactic reaction is the harm that could do, with sky high bp and heart rate, and cheeks so red I could light up my entire village (I took it 4 hours ago and am still flushed).  Fuck.

As I’ve had no drugs all week, my GERD has had a field day.  The pain is worse than anything I’ve ever had to endure.  I can’t live with it.  Suicidal thoughts plague my every waking moment.

I’m speaking to my GP in the morning, but realistically what can she do if I can’t take any acid reducing medication?  I swill Gaviscon like it’s water and it does not help one iota.

I’m super depressed as you can imagine.  I’ve lived with this shit for over 20 years and I’m just exhausted from it all.  I live every day with the fear of what I’ll react to next and it’s just so tiring.  I’m always allergic to anything which might help me.

Needless to say I won’t be writing much on here until I can get things under control.  I tend to just go into myself when I’m going through a bad patch and don’t want to to be online and ‘chatty’.  And it’s not in my nature to come online and whinge – it doesn’t help me and you all have your own woes.  So this is me saying you might not hear from me for a bit.  I’ll be back when I no longer feel like slitting my wrists in the bath (a thought which enters my head on an hourly basis).

Jak x

p.s. before I go, I’d planned on sharing a book with you in my next post, so I’ll share it in this one instead.  ‘Girl in the Dark’ by Anna Lyndsey is the true story of a woman who suddenly becomes allergic to light.  Not just sunlight, all light, and lives in a completely dark room.  No laptop, no TV, no sunlight, no moonlight, no fresh air from an open window………..just total blackness.  It’s recently been serialized on BBC radio for those who can listen online http://www.bbc.co.uk/programmes/b0540b3h but is also available to buy in hardback or Kindle download from Amazon.  There’s always someone worse off than you……