Tag Archives: drug reactions

Weekly roundup

Sorry there has been no blog post this week – I simply didn’t have the time, and more importantly, the energy.

Tuesday I drove my Dad 90 miles to the other side of the country for his pre-op assessment.  He has spinal stenosis due to a bulging disc and needs decompression surgery.  Eighteen months ago he was still walking 6 miles up the mountains every week but now needs a wheelchair outdoors and has to use a stairlift to get up the stairs to his apartment.  His deterioration has been swift and scary and he’s desperate for surgery, for which he’s now been waiting nearly 4 months.  At the assessment we met the Surgeon who will be carrying out my Dad’s operation and he dropped a bit of a bombshell.  He said that although my Dad’s MRI scan showed the narrowing in his spinal canal it isn’t bad enough to be giving my Dad such severe symptoms and he thinks something else may be going on further up his spine.  So while we wait for the surgery to take place I’ll need to take him back to the Hospital a further two times, once for an MRI of his upper back and neck and once for some nerve conduction tests.  While it’s bloody annoying to have to do another couple of 180 mile round trips I’m glad that the Surgeon is being thorough.  My Dad has MGUS (monoclonal gammopathy of undetermined significance) which showed up unexpectedly in his bloodwork a year ago and none of the doctors I’ve spoken to so far have wanted to know.  However, MGUS can cause peripheral neuropathy and we need to know whether that is contributing to his leg weakness.  He also has cramping/spasming hands to the point where he can’t even pick a cup up and again this has been ignored by the doctors we’ve seen so far.  But it’s not normal for heaven’s sake and I’m chuffed the Surgeon agreed and has decided to take a look at his neck at long last.

The Clinic was running 2 hours late, so we ended up having quite a long day.  We set off at 9.15am and finally got home at 3.15pm.  I was knackered.  However, that night I was teaching the beginner’s photography class so had to pull my leaden body and foggy brain together.  I managed to get through it but was so exhausted it was like an outer body experience and I can’t remember a thing about the evening or what I said!

I coped really well all things considered but the next day I woke to find I was crippled with pain and could barely walk.  I blamed it on all the driving and having to push my Dad’s wheelchair…………until my period arrived out of the blue :-/  My surging hormones seem to be affecting my ligaments massively as I transition into Menopause and even though my period has now finished my back and legs are still stupidly painful.  The constant shooting nerve pain right down to my ankles is particularly wearing and I can’t get comfortable enough to sleep.  I’m so over it I can’t even tell you and I had to miss Wednesday’s Camera Club as I simply couldn’t sit upright.

Thursday night I’d agreed to go to a Club event.  It was a buffet to thank those of us who had judged a recent International Photography Salon and I’d really been looking forward to it as I have no social life and rarely get to mix with other people.  Sod’s law that it coincided with having to take my Dad to the Hospital and my unexpected period, and I woke that morning feeling like road kill.  I lay in bed and cried at the unfairness of it all before eventually pulling my sorry arse together and just getting on with it.  I rested until late afternoon, had a bath, took some ibuprofen, slapped on my TENS machine and my SI belt and off I toddled.  I’m glad I forced myself to go because I had a smashing night but I’d be lying if I said I wasn’t still suffering for it three days on.

I’ve lost my reading glasses.  The case is on my over-the-bed table as it always is but the specs are nowhere to be found.  I have no clue where they could be and have searched every inch of my little house to no avail.  £160 of spectacles seem to have disappeared into the ether just before Christmas when I’m already broke.  FFS!

Speaking of Christmas, it’s five weeks away and I haven’t given it a second’s thought.  Arrrghhhh, panic!!

Today I am going out for lunch with my bestie 🙂  I don’t know why but this week I’ve felt lonely and a bit sorry for myself so I’m looking forward to seeing her, plus there’s the added bonus of someone else making me a meal for a change which is my idea of heaven.   But first I have to get my thermals on and take the hound out.  It’s a stunning, crisp late Autumn morning here in the lake district but it’s bollock freezing cold and I’m definitely going to need a hot water bottle stuffed under my jumper to keep me warm on my scooter.  It makes me look as fat as a whale but I’ve gained so much weight in the last 12 months I actually am as fat as a huge blubbery whale, so that’s alright then 😉

 

 

 

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A novel experience: part 6

As regular readers know, I’ve been trying to write a book about my life with M.E. for several years now and sharing little bits on my blog as I go along.  As one of only a tiny few severely affected people to have recovered enough to put pen to paper I feel it’s vitally important to document my experience, but it’s a tortuous process as I can only write one short paragraph at a time on the days my battered brain feels up to the challenge.  In truth, I might be drawing my pension before I finish the sodding thing!

During the early years of the illness when I was at my most severe I tried every treatment known to man and some that man had never even heard of!  I spent 2 months one summer living in a caravan with my Mum and having experimental treatment at a private Clinic in Lancashire, during which time I tried various supplements to try to alleviate my myriad of symptoms.  My body has been unimpressed by chemicals from the start, though, and the following excerpt describes my experience with the supplement Melatonin:

“Two weeks later and I’m starting to see tiny signs of improvement.  My speech is now almost back to normal and I’ve taken my first few gazelle like steps on stick thin spindly legs.  I’m also able to chew more solid food without becoming exhausted and can watch a whole thirty minute episode of Emmerdale Farm without having a fit.  Who knew Jack Sugden and a cow’s udder could make a girl quite so happy.

I still can’t sleep, though, no matter what I do and am still only managing about three broken hours each night.  Jan swears by something called melatonin which is produced naturally by the brain and is one of the hormones which is disrupted when you have jet lag, and this evening has been kind enough to let me borrow one of her little white pills to try.  I swallow the tablet with high hopes, then switch off the fluorescent strip light stuck onto the wall below the window and snuggle down in to the surprisingly comfortable foam mattress, the muscles in my legs twitching and jerking as I relax.  Mum is pottering around getting ready for bed and after a few minutes I hear the sheet rustle as she climbs onto her bunk at the other end of the caravan followed by the flick of pages as she opens a book to read, her wheezy breathing from years of heavy smoking rhythmically breaking the sultry air.

I dread the night.  The second I close my eyes and retreat into the darkness my brain treats me to an exploding light show and the pain I’ve managed to keep quiet all day finally demands to be heard like a petulant child.  Pins and needles stab my hands and feet while the rest of my body hums with pulsing, jolting electricity, the nocturnal silence spoiled by the sound of piercing tinnitus ringing in my ears.  I am way beyond tired, my blood so weak it can barely pump itself round my veins, yet sleep eludes me and I lie in the gloom overwhelmed with sickness so all-encompassing the outside world ceases to exist. Please God, I pray, let me just rest because I don’t know how much longer I can go on feeling this ill without a break.

God’s answer is swift and unsympathetic.   My brain suddenly lurches in my skull and then I’m falling through space, hitting solid ground with such force that every bone in my body feels broken.  What the hell?!  My eyes spring open and a tidal wave of nausea washes over me, metallic vomit rising in the back of my throat.  The sensation of falling hits me again, and again, and I bolt upright, yanking on the strip light in the hopes that if I’m no longer in the dark the feelings would stop.  They don’t.

‘Everything alright Sweetie?’ asks Mum, laying her book face down on her lap.

I try not to sound panicky as I reply ‘I think I’m having a bad reaction to the melatonin.’

Mum comes to perch on the edge of my bunk, rubbing my back with her hand.  ‘What’s happening?’ she asks anxiously.

‘I dunno.  It feels like I’m falling off a very tall building in my brain’ an explanation I know sounds bonkers but I don’t know how else to describe it.

‘Is there anything I can do?’

I shake my head and force myself to breathe slowly in and out trying to calm the reaction down but it only serves to make me dizzily light headed from lack of oxygen.  To feel like I’ve just jumped out of a plane while sitting motionless on my bed is bad enough but the thud as I hit the ground is excruciating as my nervous system is unaware the whole thing isn’t real so fires off pain signals like I’ve been shattered into a thousand pieces.

Mum continues to stroke my back for several minutes trying in vain to comfort me before getting up to fill the kettle, busying herself so that she at least feels useful.  I ask for Camomile, which tastes like sweaty socks but is nevertheless soothing, and we sit side by side on the little bed sipping tea and waiting impotently for my immune system’s meltdown to end.

Three indescribable hours later in the small hours of the morning the torture finally recedes and I am left in peace albeit invisibly battered, bruised and broken.  I slump down onto the mattress and Mum tucks a thin sheet around me, stifling a yawn as she kisses my hair before climbing back into her own bed and switching out the light.  Exhaustion washes over me in crashing, urgent waves yet despite every molecule in my body crying out for sleep it once again abandons me, leaving me to endure yet another night of poisoned pain and sickness.  For the first time I’m not scared I’ll die, I’m scared I won’t and will have to live like this forever.”

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.

 

Some days it’s all just too much

My day began at 7am, which is a lie-in for me as I’m usually awake at 6am.  I slept in because I’d tossed and turned all night, which I usually do if faced with something to do the following day.

I had breakfast, then started printing off information for my Anaesthetic/pre-op assessment appointment this afternoon.  I should probably have done it over the weekend, but to be honest I needed some time off from thinking about my health.  Or doing paperwork.  In fact, from doing much of anything because after the events of last week I’m exhausted.

It took an hour to sort through all my notes, medical and drug history, get it in order and print it all off.  As I was reading it I thought “you’re mental if you think they’re going to operate on you.  Every single drug you’ve tried in the last 15 years you’ve had anaphylaxis to, so the chance of a massive operation going well is a billion:1.  You must be crazy to even be contemplating it – you do know the risk is that you end up bedridden again for the next 10 years because of how it will affect your (very stable) M.E. don’t you?”  I felt weepy before the day had really begun.

At 9am while the dog walker was out with Bertie I got my food together.  I’d decided to eat dinner at lunchtime (at my Parents when I dropped Bert off) and take lunch with me to eat in the car this evening.  I’d cooked the day before, so my dinner was just to reheat at Mums.  I packed a sandwich, cold drink (it was 22C when I set off and the air con still isn’t fixed), flask of tea (it was going to be 12C and raining in Newcastle!) and some sweets for energy.

I got my food, Bertie’s food, paperwork, a pillow, my TENS machine, my iPod and my handbag ready in the hall to pack into the car.  I then put a load of washing in the washing machine and emptied my airing cupboard as I’m having the gas boiler serviced at the crack of dawn tomorrow.

I then rang the Garage as my car was booked in tomorrow afternoon to have the new compressor fitted but I’m having to take Bertie for his MRI scan instead so I needed to reschedule (which I could tell pissed the secretary off no end), then rang the groomer and booked Bert in for a clip this Thursday.

I then got myself dressed, braced and put my TENS pads on and at 10.30am bundled all my gear and the dog into the car.  I then realized someone had parked in my private driveway for the hundreth time to visit the Upholstery business nearby and was blocking me in, despite a 2ft NO PARKING sign.  I stuck my head round the door of the workshop and said “I need my car out please” to be met by a member who staff who literally barked at me “can’t you bloody wait a few minutes?!”.  At which case I barked back “I’m going to the hospital, so no I can’t.  Move the car!”.  I wanted to burst into tears then and there.

I drove the 7 miles to town, filled up with fuel and went to the Deli to collect my yeast free bread order.  I then went to Mums to drop off Bertie and found her upset as my Uncle had been taken into hospital last night with suspected Septicemia (she’s still grieving over suddenly and unexpectedly losing my other Uncle only 2 weeks ago).  I tried to eat something but it was hard getting food past the knot in my stomach.

I set off from Mums at 12.30pm, even though my appointment wasn’t til 3pm.  Afternoons are visiting time at hospitals and the car parks are always full to overflowing so I needed plenty of time to find a space.

I nearly had an accident 10 minutes into my journey, when I was in the middle lane of the motorway overtaking a man in a vintage car, who then simply tried to pull over into my lane with no warning.  I couldn’t go anywhere as there was a BMW zooming up in the 3rd lane doing about 90mph.  So I blared on my horn and the vintage car man swerved back into his own lane.  It didn’t do much for my already frazzled nerves and I wanted to cry even more.

The A69 between Carlisle and Newcastle is 50 miles of mostly single lane road, notorious for accidents as it’s the main link between the north West and the north East of England and always heaving with slow moving lorries who struggle to climb the mountain range.  However, today seemed more congested than usual and we crawled along at between 25 and 30mph, on a road which I usually cruise at 50-60mph, with me getting more and more frustrated and worried that I wouldn’t reach my long awaited appointment on time.  Turned out a man towing a caravan was tootling along at 25mph causing a 10 mile tailback of irate drivers.  We all wanted to fucking strangle him.

As expected, when I finally reached the Hospital the multi-story car park was full.  I’d never used the main car park which is further up the busy main road and had no clue where I was going.  I did get there, only to find it too was full.  And my appt time was getting closer and closer.  Eventually I saw a man jangling his keys and chatting on his mobile phone, so I wound down the window and said “excuse me, are you leaving?”  His reply: “I’m on the goddamn phone you rude bitch!” and he turned his back on me.  “Sorry” I shouted, “it’s just that I’m getting desperate”.  I was that tiny bit nearer to bursting into tears.

I continued to stalk cellphone man and after some faffing he left the car park and I nabbed his space.  After a pit stop at the loo I made it to the rabbit warren that is Main Outpatients on time, then sat for nearly 30 minutes twiddling my thumbs.  I was then sent for an ECG, had my bloods done, my BP taken and my weight recorded.  I then had to go through a very in depth questionnaire with the nurse who looked shell-shocked at all my medical conditions and the 2 page drug reaction sheet I gave her.

I was then sent back to Outpatients where I waited for another 30 minutes to see the Anaesthetist, who was lovely and greeted me with “this will be the shortest consultation in medical history because I’ve just spoken to the Gynaecologist who says you’re having the Mirena Coil and don’t need surgery”.  Am I?  News to me.  I didn’t even see the Gynaecologist when I was there last week.  I saw a bloody trainee who proceeded to tell me that if I could hold out the Menopause would cure my endo and adeno, and failing that a hysterectomy definitely would cure me.  Both of which is complete bollocks.  He needs to go and read the message boards because there are many, many women out there who’ve had total hysterectomies and gone through the menopause and who still have endo pain as it’s oestrogen driven and we continue to produce oestrogen even with no ovaries.

Anyhow, back to today.  I told the Anaesthetist that I wanted a hysterectomy because the Mirena would do nothing for my adhesions which are what feel to me like they cause the most pain, particularly on my right ovary and my bowel.  So bless her she said “well try the coil for 6 months as the Gynae suggests, but in the meantime I’ll contact Dr Seneviratne at St Marys and ask him about surgical and drug options, plus I’ll contact Rheumy regarding your EDS and surgery and your Immunologist about M.E. and surgery.  Oh, and I’ll hand your case over to my colleague who runs a surgical allergy Clinic and who is better equipped to be your Anaesthetist than I am.”

I left hospital at 4.50pm and hit rush hour traffic, which were I live consists of 2 tractors and a bike but is slightly more stressful in the middle of the north’s largest city.  I did make it onto the A69 before the tears started and I cried most of the way home, salty snot mingling with my egg buttie which I ate with one hand while steering with the other (hurrah for automatic cars and cruise control).  It’s now 7.15pm and I’ve just got home.

I’ve had enough now.  Enough with the explaining my diseases.  Enough with the medical appointments.  Enough with the planning every day with military precision.  Enough with explaining that, yes, I know the Mirena coil only emits a tiny amount of hormones but you wouldn’t say to someone with a peanut allergy “oh, it’s only a very tiny piece of peanut and shouldn’t affect you” would you?  There’s a reason I’ve not taken hormones for the past 20 years, not withstanding the fact the last time I tried them I was so depressed after only 3 weeks I literally could not get out of bed.

I can’t do anything about the pain of my EDS.  I can’t do anything about my faulty immune system or my faulty nervous system.  But I can have a hysterectomy and do something about my godawful pelvic pain which I’ve lived with since I was 11 years old.  OK, it might not cure it entirely but anything would be an improvement on living like this.

So, I now have to decide if I’m even going to try the Mirena coil and if I don’t if that will count against me.  Then in 6 months I have to do the whole gynae appt thing all over again.  I don’t know if I’ve got it in me.  I’m too tired.  And despondent.  And fed up of the whole being ill thing.  Some days it’s all just too much.

 

 

 

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.

Odds n Sods

There was no weekly roundup on Sunday because I had a 2 day ovulation-induced migraine. The kind where my entire head felt like it was being excavated from the inside and I didn’t dare move in case I passed out with the pain. I am soooo thankful I only really get them twice a month now (ovulation and menstruation), rather than the twice a week of old, but would be even happier if they’d bugger off altogether.

My mast cells are absolutely bonkers at the mo and I have no idea why.  I was (just about) coping with my reflux by swigging Gaviscon every 2 hours, then my body decided it would ratch up my misery a notch or two and started reacting to that as well.  I am now totally med free and it’s not fun.  I don’t know what’s worse – the pain and inevitable cough, or taking drugs and being anxious every day of my life that today will be the day all hell breaks loose and I’ll have anaphylaxis to them.  At the moment I’m living with the pain and enjoying the mental peace.

Not only are my mast cells very drug twitchy, they are also very digestion twitchy and I’m having some small reactions after I eat.  It’s nothing to do with what I’m eating, as I had freshly cooked Shepherd’s Pie on Monday night and reacted, and had leftover Shepherd’s Pie (technically more histamine loaded than the fresh dish) last night and didn’t react, I think it’s just the mere act of eating and the histamine produced during the digestive process.  It’s been a very long time since I’ve had to put up with reactions after food and I’m unimpressed.com.  I also still have rampant butt hives.

I apologise it’s been so long since I added any new recipes to my blog – I’ve just not been well enough this year to faff on for hours in the kitchen.  But I am hoping to add a couple of quick dishes in the next week or so.

We all cope differently with our really bad patches and I thought I’d list the few things which have always helped me cope with mine:

  • Hot water bottle
  • Warm baths
  • My electric blanket
  • Ice packs
  • TENS machine
  • My pets
  • My parents, my Mum in particular
  • Tea (which I technically shouldn’t be drinking but couldn’t get through the days without – I am British after all 😉 ).
  • Warm milk.  I’m often unable to eat during bad patches, but often find I can keep down a mug of warm milk and the odd Rich Tea biscuit, both of which have saved me from starvation on a number of occasions!

Mind set is also important, and while I can’t say I don’t have times where I fall apart (like, last week!) I do try not to linger there for fear I’ll become clinically depressed.  For the most part I have mantras and thought processes which I return to in times of crisis, including:

  • Acceptance.
    “Jak, you can’t change the situation, so accept it.  The worst that can happen is that you die and the way you feel at the moment that would be OK.”
  • Relax into the symptoms.
    The more I fight the pain, or the spasms, the nausea, or the restlessness the worse they get.  I repeat the mantra above and try to just relax and let the sensations wash over me.
  • Remind yourself how strong you are.
    “Jak, you have lived through this before, many times, and you have survived.”
  • Remind yourself you only have to get through today.
    Don’t worry about how you’ll cope with tomorrow, or next week, or next month.  Today is all that matters – get through minute by minute if that’s what it takes.
  • Distraction.
    I do anything and everything I can to take my mind off my situation.  I watch TV if I’m well enough, I go online if I’m well enough, I crochet if I’m well enough, and if I’m not well enough I listen to a talking book or just lie and focus on the birds singing outside my window and try to identify their different calls.
  • Hope.
    None of us would get through life without hope.  Hope that tomorrow, or next week, or next month, or next year, will be better and it often is.

While I’m wittering on about nothing much in particular, I thought I’d share this recent research on the benefits of milk with you.  As you know, I don’t adhere to the current trend that gluten, grains and dairy are inflammatory and bad for us – just the opposite.  This research paper has demonstrated that people who regularly consume milk have high levels of glutathione in their brains.  Glutathione is often called the “mother of all antioxidants” and is found in every cell in the body.  It protects mitochondria (our energy producing cells) from bacteria and viruses as well as toxins, and being as though our mitochondria are affected in mast cell disease (and possibly M.E.) this can only be a good thing.  I know, however, many of you react to dairy – I’m just lucky that it’s one of my ‘safest’ foods.  In saying all that, the milk I drink is always organic from grass fed cows and this is very important.  As with all research this needs to be replicated and further studies need to be carried out.