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Yasmina Ykelenstam

MCAS: THE NIGHT IT ALL BEGAN

The night my health took a turn for the worse

I’m no saint but on the whole, I’ve always tried to adopt a relatively healthy lifestyle. Although quite partial to the odd chocolate croissant and cappuccino, I’m one of those rather annoying people who would rather spend a weekend blasting balls on a tennis court or running outside than stuck indoors watching a TV Box Set.

I think nothing of blitzing up green juices and smoothies and at the risk of sounding like a total bore, I’ve never smoked, rarely drink alcohol and have followed a meat-free diet since the age of 13. Except on December 3 2015 my life was turned upside down when I was rushed to hospital with my first ever allergic reaction. It was a particular bad boy – life-threatening in fact –  and came on entirely out of the blue.

On the night in question, an old school friend had popped over for a drink and a catch-up.  I’d warned him in advance that I might be drooling – not in that way. Earlier in the day I’d had dental work carried out on an excruciatingly painful molar tooth which, it later emerged, was dying but by the time Stephen arrived at my house my mouth felt pretty normal and I was yakking ten to the dozen as usual.

“My mouth felt pretty normal – I was yakking ten to the dozen as usual”

Only, an hour later I became aware of a strange sensation in my upper lip. It felt heavy and tingled. “My lip feels weird,” I blurted out to Stephen, who was sitting in the armchair opposite me. He peered over.  “It looks fine to me,” he replied nonplussed.

So I let it go for the rest of the evening only when I went to wave him goodbye at the front door, I caught sight of my reflection in the mirror. Either my mate was being polite or needed his eyesight testing. Staring back at me was a massively swollen top lip.

By now it was midnight. I awkwardly brushed my teeth, negotiating the horrendous trout pout as I went, before climbing into bed, and prayed that the swelling would subside by the morning.

“I awkwardly brushed my teeth, negotiating the horrendous trout pout as I went”

Except, as I tried to nod off, I became aware of an intolerable itching in my throat. A voice inside told me to call 111 for advice – something I never do – but thank goodness I did. The operator was a calm and lovely chap who explained that the situation might be serious and he’d need to send a paramedic round asap to check me over. As I lived alone, he told me to stay on the line with him.

Within minutes a first responder had arrived at my house. He quickly injected me with antihistamine injection before calling an ambulance. Moments later two paramedics arrived at my door. “Ohhh, someone’s been in a fight with Frank Bruno,” quipped one, before turning serious when I refused to go to the hospital.

“There are people far needier than me, I wouldn’t want to take up a valuable NHS bed,” I exclaimed, before being told in no uncertain terms that I was having a severe anaphylactic reaction. “But I’ve never suffered from allergies,” I meekly protested as I walked up the stairs to gather my things. Precisely two minutes later my throat started to close up.

“Precisely two minutes later my throat started to close up.”

After this moment everything is a blur. I was pumped full of adrenaline twice  – first in the ambulance and then later on in the A&E resuscitation ward – before being admitted to hospital. Doctors asked if I’d eaten or done anything different on the night of the attack. I hadn’t.

The only thing I could think of was the dental work on the massively hyper-sensitive molar tooth earlier in the day but then I’d had a number of fillings in the past and had never experienced a reaction before to the anaesthetic. I was later given steroids, referred to an allergy specialist and sent on my way.

I shrugged the episode off as a random event, especially as I’d always been relatively fit and well. Little did I know then that my health – something I’d always worked so devotedly to maintain – was about to unravel in the most spectacular fashion. Read here.

 

Helen's Health

THE TONGUE TWISTER

The tongue twister

A few months after the first hospital dash,  my sister threw a dinner party to celebrate moving into her new home. The evening had already descended into farce as her cooker had blown up before we’d arrived so she was forced to nip next door to prepare the main meal in her neighbour’s oven. Impressively, she managed to muddle through and all four of us had a good laugh about it as she served up the starter, which was a salad of green leaves, halloumi, pomegranate and balsamic vinegar.

I took one mouthful and became aware of an immediate itching – a sign of an allergic reaction – in my throat. I popped an antihistamine to be on the safe side. It seemed to do the trick. Except, a few hours’ later on the 15-minute drive home, my tongue began to expand at an alarming rate. Initially, it felt as though it were ‘in the way’, but by the time I reached my front door it had swollen to an enormous size and barely fitted inside my mouth.

I didn’t know it at the time but I was having what is known as a ‘secondary reaction’. As I opened the front door I felt dreadfully light-headed and dropped to the hallway floor; my blood pressure was plummeting. By now swallowing had become difficult; my breathing laboured.  I grabbed the phone and dialled 999 but it took forever to get my words out.

“Was I about to suffocate to death on my own? It certainly felt that way.”

Somehow the very patient operator understood what was happening and urged me to use an auto-adrenaline injector (commonly known as an Epi-Pen). Except I hadn’t been prescribed one.  “Is anyone with you?” she asked. “I – live – alone,” I replied in between gasps for air. “Open the front door now,” she instructed. “The ambulance is on its way.”  Terrified, I started to cry.  Is this what suffocation felt like? Was I about to die on my own? It certainly felt that way.

I counted every one of those ten minutes spent waiting for the medics to arrive.  They set to work immediately, administering adrenaline before rushing me to the hospital. The conclusion was anaphylaxis.

Again, steroids were prescribed and I was told I’d need to see the immunologist again at a later date.

So I waited patiently for my appointment to come through. Eventually, I returned for another set of skin prick tests for suspected food allergens as doctors tried to pinpoint the cause of my attacks. Again, the results came back negative. Why could we not find the trigger? My immunologist explained it was like searching for a “needle in a haystack” before adding that weird reactions like these can often disappear as quickly as they start. I held onto this hope. It soon faded.

“Each episode would affect my airway: either my tongue would swell or my throat would close up.”

Just when I thought things couldn’t possibly get any worse, the allergic reactions began happening EVERY DAY. Each episode affected my airway: either my tongue would swell up, my throat would close or both.  Occasionally the reactions would be accompanied by an intolerable itching all over my skin and they’d occur for no rhyme or reason; in my sleep, on an empty stomach, when I got hot, and, I eventually deduced, when I ate certain foods; namely fruit – which being a non-meat eater translated to half my diet – marmite, vinegar, mature cheese and alcohol. Yet again the skin prick tests returned negative.

A daily double dose of long-acting antihistamine was prescribed to try and calm my overactive immune system, alongside fast-acting tablets to take at the first sign of a reaction as well as an auto-injector adrenaline pen, which I was instructed to carry on me at all times. This was to be used if the other drugs failed to work and I was struggling to breathe or speak.

“I was instructed to carry an auto-injector adrenaline pen at all times.”

By now I’d become too scared to eat and operated in a state of constant drowsiness – a side effect of the medication. My GP told me to rest. I didn’t and pushed on. Being self-employed and with a mortgage to pay, I was forcing myself to work every spare minute to make up for all the time and money I’d lost through the revolving door of hospital appointments.  I became a virtual recluse and felt utterly exhausted.

Questions whizzed around my head. Why was my previous good health falling apart at such an alarming speed? Why were the specialists unable to tell me what was going on? At least if I knew what I was reacting to I could regain a sense of control. Not knowing made me anxious.

Alongside this, I was also undergoing a number of MRI scans because between the first and second allergic reaction, my right foot mysteriously stopped working… Read here. 

 

 

 

 

 

 

 

Helen's Health

WHEN YOUR FOOT DECIDES TO STOP WORKING

When your foot stops working

Yes. That’s right. Between the first and second severe allergic reaction, my right foot perplexingly started to misbehave. Just like that. On the day it happened I was working a news shift in an office. “Careful there,” my editor said as I stumbled on my way to the printer. I laughed. “I’ve got really bad pins and needles in my right foot. It must have just been the way I was sitting,” I casually responded.

Now I’m not a hypochondriac and figured there must be some reasonable explanation. Being quite a sporty person, I’m used to injuries, pulled muscles and have quite a high pain threshold.  I simply assumed my legs had been crossed or held in an uncomfortable position for too long and figured the numbness would subside. I was wrong. Five hours later my lower leg was still dead, I had no feeling in my toes. I thought things would improve by the next morning but my foot began to slap uncontrollably when I walked. So I booked an appointment to see a private physio.

My foot began to slap uncontrollably when I walked

“I don’t want to alarm you but think you need to book a GP appointment if things don’t improve,” she said after much poking, prodding, massaging and ultra-sounding. One week after the symptoms flared up, I was lying on the couch in front of my doctor who was unusually quiet as he examined me. I squirmed as my left foot and ankle were pushed, pulled and scored with a weird tool that resembled a knitting needle. Being hugely ticklish, the sensations weren’t that pleasant. He repeated the process on my right foot and ankle. “How does that feel?” he enquired. “I’ve no idea,” I replied, unable to feel a thing.

My left foot and ankle were pushed, pulled and scored with a weird tool that resembled a knitting needle

He immediately called a neurologist (brain specialist). The consultant on the end of the phone agreed to see me. My mum drove me to the hospital, but the A&E receptionist refused to accept the letter from my GP and I was told I’d have to wait in the emergency department. Many hours later I saw a doctor who then went to find the neurologist. He’d since gone home. Hours later I was x-rayed for a broken ankle – it wasn’t – before being told that I’d need to book another appointment with the GP who would refer me to the neurologist. Back to square one. I felt utterly deflated.

Not only was my foot playing up, I’d also begun to experience numbness on the left side of my face and my fingers felt as though they weren’t working properly. Alarmingly, I’d also begun dropping things without realising when distracted or in conversation. Things were really beginning to get me down. I’d always been an optimistic, glass half full person but was struggling to see the silver lining in all of this. My mind went into overdrive. My beloved aunt and cousin had both died from brain tumours at a young age. Was this the fate that awaited me?

I experienced numbness on the left side of my face and my fingers felt as though they weren’t working properly

Despite knowing better,  I turned to Google for clues. I shouldn’t have. I scared myself silly. At the same time, my tongue swelling episodes had ramped up phenomenally. Eventually, I saw a neurologist and a diagnosis of Foot Drop – paralysis/weakness in the foot –  came. Again there was no concrete explanation for it.  MRI scans of my brain were – thankfully clear – but I’d still need to be monitored.

Over on the allergy side of things my immunologist had ruled out anaphylaxis and ruled in idiopathic angioedema – unexplained deep tissue swelling. This occurs when the body mistakenly detects a harmless substance, such as a certain food, for something dangerous triggering the release of histamine to fight the threat. The protocol was to manage the symptoms in the same way one would for anaphylaxis because every reaction affected my airway.

I was also in the process of selling my house – one of the most stressful things you can do

On top of this, I was dealing with repeated bouts of episcleritis which caused excruciating pain and light sensitivity in my left eye. Having developed an allergy to ibuprofen – a painkiller I’d always been able to tolerate – I was back and forth to the eye specialist who prescribed steroids.  Oh,  and I was also in the process of selling my house – one of the most stressful things you can do.

Ironically, exercise – the one thing I’d always rely on to clear my head during stressful periods – was no longer an option. I was forced to suspend my gym and tennis memberships. I stopped socialising. And because I wasn’t well enough to do first-person fitness-based newspaper commissions, I missed out on work. I felt lost, frightened and trapped in a downward spiral. I didn’t know who I was anymore.

So what happened next? Read here. 

Helen's Health

WHEN YOUR TONGUE SWELLS UP ON A LONG HAUL FLIGHT

It’s now the summer of 2016 and I have a follow-up appointment with a different neurologist about my unexplained Foot Drop.  Although there’s still a degree of weakness in my left toes – I can’t wiggle them – I have movement in my foot and can lift it. Improvement. Yey.

Meanwhile, a nerve conduction study had identified some mild nerve damage in my right hand. Again, there is no explanation as to why. Nevertheless, I’m delighted to be given permission to try light exercise.

The reactions affecting my airway are still ongoing but the allergy management plan prescribed by my immunologist is helping and has afforded a sense of control. The dark cloud that has been hanging over me is beginning to shift, so I decide to accept a travel commission to Barbados – one of my favourite Caribbean islands. The trip is FANTASTIC. And it makes a refreshing change to the merry-go-round of hospital appointments I’ve grown accustomed to.

“My lizard-esque antics attract some quizzical looks from other tourists”

I’m with a great bunch of people including blogger Nadia El Ferdoussi who acts as my Official Tongue Checker. Now, as a rule, I know when I’m reacting because it becomes difficult to swallow or because my tongue no longer fits within my teeth. But it’s always good to have a second pair of eyes monitoring the size of your tongue.  Speed is of the essence in these situations as the antihistamines must be taken at the onset of a reaction otherwise they’re unlikely to work. Nadia checks the size of my tongue morning, noon and night. It’s such a relief to have that support, although my lizard-esque antics attract some quizzical looks from other tourists.

Meanwhile, my troublesome left foot is greatly responding to the gentle swimming and paddling. I even dabble with paddle boarding. Dramatic as it sounds, I remember what it’s like to laugh again and by the end of the trip, I feel in a much better place physically, emotionally and mentally.

Only, as we taxi across the runway preparing for our eight-hour night flight home, I become aware of a familiar sticky feeling in my throat. “Please tell me I’m not having a reaction,” I quietly whisper to myself. Then boom. It happens. I can feel my tongue swelling. Not only that my right hand is starting to grow in size. This has never happened before.

“I’ve stupidly left my medication in a bag in the overhead locker.”

Panic consumes me. Our group is scattered about the plane. The cabin crew are strapped into their seats. And I’ve STUPIDLY left my medication in a bag in the overhead locker. I have no water. The seatbelt sign is on. So I just sit. Petrified. I need to take my meds fast but can’t get up. I hit the call button as soon as we are permitted to move. My tongue is huge.

A crew member grabs my emergency drugs and shuffles me off to the back galley, collecting Nadia along the way. The FSM (flight service manager) then calls a doctor on the ground who advises I up my antihistamine dosage. Thankfully, the plan of action works. My tongue stops swelling and Nadia stays with me for two hours. I vow to make a checklist on how to travel with allergies as soon as I get home and made a mental note to always have my medication within easy reach and carry water on me at all times. How could I have been so stupid?

Back on dry land, I pay to see a different dentist about my hypersensitive tooth – the one I’d originally been treated for on the day of my first severe allergic reaction.  It had been prepared for a root canal and had a temporary dressing inside but the new dentist examines me and regrettably explains the tooth cannot be saved and needs extracting. It’s a huge chunky one in my top set so now I’m going to be left with a GAPING HOLE in my smile on top of everything else. My heart sinks.

My Worzel Gummidge appearance is going to take a while to grow used to.”

The procedure is made all the more worrying because we still do not know the cause of my reactions. My dear mum accompanies me to the surgery. I’ve taken a long and fast-acting antihistamine as a precaution and we have two Epi-Pens on standby. Fortunately, the extraction goes well although my new Worzel Gummidge appearance is going to take a while to grow used to.

Only by the Autumn, my health begins to deteriorate again. Another appointment has come through the post.  Back to the hospital again, this time for a less than glamorous investigation involving my rear end and a camera. The diagnosis? Irritable Bowel Syndrome.  I’m also dealing with intermittent horrendous stabbing pains in the muscles and joints all over my body. The episcleritis is back. I feel exhausted. And each day I wake up feeling as though I’m  fighting the flu.

My wonderful GP is as bewildered as I. Sat in front of him is a patient who desperately wants to return to her active, healthy lifestyle but whose body appeared to be falling apart. He orders more blood tests, takes one look at the results and immediately refers me to an endocrinologist (hormone specialist). Six months later the appointment comes through.

So what does he find? Read here. 

 

 

 

 

Helen's Health

THE VALENTINE’S GIFT LIKE NO OTHER

Valentine's gift

It’s Valentine’s Day 2017. Another afternoon, another specialist. This time I’m sitting in front of a very jolly endocrinologist (hormone specialist) armed with my A4 lever arch file of hospital letters.  It’s been more than 14 months since my health started to horribly misbehave. The unexplained and spontaneous allergic reactions, the foot drop, the bizarre sensations in my face and fingers, the stabbing pains all over my body and the extreme heaviness in my legs. Although I’ve seen a raft of specialists, there’s been no explanation for the cause of my ill health and, in some ways, not knowing has been the hardest part.

“What’s been going on?” the consultant softly asked. “I don’t know where to begin,” I sighed, before handing over a couple of sheets of well-thumbed A4 paper. Keeping track of everything had become a full-time job in itself so I had compiled a succinct list of every clinical episode and every blood result in chronological order in the hope he would be able to glance at it and arrive at a concrete diagnosis. “Interesting,” he said. After five minutes he looked up. “Your latest blood tests have come back abnormal.” I could tell from the look on his face that he was about to give me some news.

“I could tell by his face that he was about to give me some news.”

Do you know what’s wrong with me?” I replied, heart pounding before blurting out that I just wanted the reactions to stop and to feel even 80 per cent again. “It looks like an auto-immune problem that’s attacking your thyroid,” he replied before explaining that I’d need to have another scan –  this time an ultrasound of my neck to double check that there were no suspicious lumps and bumps there.

“You’ll need to go on medication right away, have your bloods rechecked and come back in see me in a month or so,” he continued. “If you respond to the thyroxine we can discharge you and you’ll then need to be monitored by your GP  every six months.”

Now,  I’m not sure how many people would be delighted with a Hashimoto’s diagnosis but I was pleased purely because something had been identified at long last. I could have kissed him.  Hope flooded through my veins, especially as the thyroid gland is part of the endocrine system, which produces hormones that coordinate many of the body’s functions. Could this be the reason why my body was acting up? Was I finally on the road to recovery?

“Could this be the reason why my body was acting up?”

A few week later I had another appointment, this time with my wonderfully patient immunologist. My tongue was still spontaneously swelling although I’d noticed a pattern – whenever I ate citrus fruit, mature cheese, marmite, baked beans, and vinegar I’d have a reaction.

During the course of my research, I’d stumbled across something called Histamine Intolerance – a condition which causes allergic-type reactions in people who do not have sufficient levels of a gut enzyme called diamine oxidase (DAO) to break down the histamine found in foods that contain high levels.

“I’d previously had skin prick allergy tests for all sorts of things including oranges, lemons, limes, and pineapple.”

Yet all had returned negative. But in those with histamine intolerance, the results always return negative because they’re allergic to the histamine in the food, not the protein. And guess what? High-histamine foods include mature cheese, wine, beer and cider, yeast, shellfish, sauerkraut, fermented soya products, and most fish. Certain fruits also release histamine including citrus varieties, grapes and strawberries!

I enthusiastically explained my findings to the immunologist who explained that there was very limited high-quality peer-reviewed research in this area. However, he also pointed out that it was not to say that the condition did not exist and supported me in my quest to try a low-histamine diet for three months, before attempting to reintroduce the food.

So far, so good. I’m having fewer reactions although I did have one recently after eating a packet of plain crisps. The intermittent stabbing pains which occur all over my body also seem to be improving so I’m keeping everything crossed.

I have a follow-up appointment with my immunologist next month and will be sure to report back on my progress.

 

 

 

Helen's Health