Browsing Category

Helen’s Health

A plea for help: Get me a diagnosis

Helen Gilbert seeks diagnosis for baffling condition

Do you remember that time my tongue started to swell up on a long-haul flight? Well, it happened again. Only, this time I was on my way back from Austria. “Would you like anything to eat?” the air hostess politely asked as we departed Innsbruck for London Gatwick. Ordinarily, I’d decline but didn’t on this occasion.

I’ve previously written about the need to be prepared if you’re travelling with allergies or, in my case, suffer from bizarre reactions that cause your airway to close up. Usually, I’m well-organised but I’d been on a press trip with a jam-packed itinerary and ran out of time on the last day.

Unlike my companions, I couldn’t eat at the airport because every option contained a trigger food. And by the time I’d settled into my plane seat, I was absolutely famished. So, I did something I would never usually do while cruising thousands of feet above the ground – I bought a packet of crisps. I quickly scanned the ingredients list; potato, sunflower oil, and salt and figured I’d be safe.

Uncomfortable sensations in body

“I’ll be fine with this,” I smiled, before quickly working my way through the bag and drifting off into the land of nod. Shortly afterwards, I awoke with a start. “We’re circling because there was a bird strike involving another plane and the runway’s being cleared,” our friendly host explained.

Being an animal lover, I’d usually feel for the deceased flock in a situation like this but my mind was distracted by the uncomfortable sensations in my body. “I don’t feel right,” I blurted out as beads of sweat trickled down my forehead. “Oh no, in what way?” the PR replied. “My throat feels sticky. It’s hard to swallow.”

Now, our host was well versed in the trials and tribulations of my baffling condition. Fortunately, I’d only had one reaction on the three-day press trip; that wasn’t particularly nasty so she immediately knew what to do. “Let me see your tongue,” she demanded. Her eyes widened. “It’s enormous,” she screamed before running off to get more water from the back of the plane.

Airway affected every time

As some of you know, my peculiar tongue swelling and throat closing reactions first took hold 20 months ago and doctors remain perplexed as to why they occur. Histamine intolerance – the body’s inability to metabolise the chemical histamine found in certain foods– is one possible theory. Symptoms mimic an allergic reaction – in many people these present in the form of a rashes or itching – but my airway is affected every time, which means I must carry an emergency kit of antihistamines, steroids and adrenaline pens wherever I go.

Trigger foods include lemons, limes, oranges, mature cheese, Marmite, alcohol, anything aged or fermented. Oh, and vinegar, which is in everything – from condiments and pickles to salad dressing and makes eating out and buying lunch almost impossible.  What’s more baffling is that my symptoms also occur when I get hot (which, incidentally also happened on the flight) or do any form of cardio, so I’m constantly walking on eggshells.

Yes, I was hungry on the plane but, with hindsight, I was immensely stupid buying those crisps. Vinegar may not have been listed as an ingredient, but the production belt at the factory could easily have been contaminated. According to my immunologist, antihistamines must be taken at the onset of a reaction to halt the swelling, which can become too difficult to control once set in yet I’d unwittingly wasted valuable time in the ten minutes I’d been asleep.

Vicious circle

“Here, drink this,” the PR instructed as I scrambled for my meds. I shovelled the pills down my throat before being ushered off the plane. The reaction was pretty horrendous – my tongue remained swollen for three days, the medication wiped me out and I suffered from severe brain fog and writer’s block – not ideal for the day job.

Despite being super careful with my diet since – the reactions are now happening again almost EVERY DAY. This requires more antihistamine to control the swelling which – in itself creates a vicious circle – as it can inhibit production of the diamine oxidase (DAO) enzyme in the gut that’s responsible for breaking down the histamine in food.

Over the past year and eight months, I have deduced that certain foods, heat and exercise – even dancing – can set off a reaction but, astonishingly, nobody can explain why and my immunologist admits he has never seen anything like it in his life. He has now prescribed stronger daily antihistamine in the hope it will break the cycle of swelling, which he says is very unusual especially as it is always symmetrical.

I’m determined to try and carry on as normal but am equally desperate to raise awareness, find a reason and gain some sort of control. I’ll let you know how I get on but in the meantime, if you’re going through a similar experience or know someone who is, please do get in touch, share or comment on my post.

Someone somewhere must know the answer.

 

 

 

 

Health, Helen's Health

TWO STEPS FORWARD, ONE STEP BACK

Helen at Wimbledon

Don’t you just love a bank holiday weekend? Especially when the weather is fabulously warm and sunny. There was no lie-in for me on Saturday morning.  I sprung out of bed like a jack-in-the-box, stupidly excited, not wanting to waste a minute of the glorious sunshine.

Aside from the excitement I felt at the prospect of taking my first weekend off in almost two months, I’d woken up brimming with energy for the first time in yonks. This could only mean one thing. Tennis. A sport, I so dearly loved and missed.

Before my health took a turn for the worse, most of my Saturdays were spent at the tennis club so it felt incredibly reassuring and ‘normal’ to pull on my Serena-style dress.

Butterflies filled my stomach as I bent down to lace up my tennis shoes, and by the time I walked out of the door, racquet-bag over my shoulder, I was grinning like the proverbial Cheshire cat. I WAS OFF TO PLAY TENNIS.

Before I left the house I’d called my friend to let her know I was on my way. “The court’s booked for an hour,” she said excitedly. “See you soon.”

Arriving at the club, I spotted a league match in progress. It was a fixture I would, ordinarily, play but given the circumstances ‘Sick Note Gilbert’ was, of course, required to sit it out.

“Stepping out on court felt ridiculously good”

“Good to see you back,” the team captain said with a smile on her face. “Hopefully you’ll get on OK and can join us again soon.”  “I hope so,” I replied, glowing on the inside. “I’m feeling much better.”

Stepping out on court felt ridiculously good. My friend opened a new tin of balls to celebrate. Usually, we hit with used ones but this was a special occasion, after all.

We set about warming up the ground strokes before moving on to volleys and serves. My body felt fine. There were no aches and pains. And although my game was a little rusty , I was thrilled to be hitting once again. The endorphins were working their magic. I felt so HAPPY.

Moreover, the sun was still shining brightly so I was getting my Vitamin D hit at the same time.

Life. Was. Good.

And we were enjoying some hard hitting rallies.

“I became aware of an uncomfortable yet annoyingly familiar sensation”

Nonetheless, 25 minutes after the first ball had been struck, I became aware of an uncomfortable yet annoyingly familiar sensation at the back of my throat.

I’d barely had anything to drink and optimistically assumed I was dehydrated. So I quickly swigged some water before resuming my position at the back of the court.

A little thirst was not going to stop me playing after all this time. But my mouth was growing increasingly dry.

“I’m sorry,” I said to Karen three minutes later, “I need to drink again.” “Go for it,” she said. So I knocked back the water and returned to the baseline. Only it didn’t quench my thirst and swallowing was becoming troublesome.

Thoughts began spinning inside my head. “Surely, I’m not having a reaction?”  I hadn’t eaten any high-histamine food – which usually sets off a reaction – and the spontaneous tongue swelling (idiopathic angioedema) had been behaving itself for a good few weeks.

I ran to the net and stuck my tongue out. “Does it look normal?” I desperately asked my friend. “Um, I don’t know what it usually looks like but it’s rather wide and fat,” she said.

“I quickly took a selfie of my outstretched tongue”

I rummaged around for my mobile and quickly took a selfie of my outstretched tongue.

There were people on the court next to me. I didn’t care.

Over the past 18 months, the pictures on my phone have proven to be a handy a log for my immunologist, especially as each one carries the date and time. Yet again, there was another hugely unflattering image to add to the collection.

“Let’s stop,”  Karen said. “I feel bad about letting you down and cutting short the session,” I replied. “Your health is more important, come on,” she insisted. So we trundled off the clubhouse for some iced water and I dug out my medication.

“It’s bizarre,” I sighed. “I’ve not eaten anything I shouldn’t have.”

I tried to piece things together. The reaction took hold half an hour after I started playing.  I was extremely hot – sweating profusely in fact – which is most unusual for me.

“Could it be that the exercise had triggered the tongue swelling?”

I then remembered that the same thing had happened on a couple of scorching summer mornings last year. On both occasions, I hadn’t eaten. On both occasions, I was in a very hot car.

Could it be that the lack of food or exercise had triggered the tongue swelling? The heat? Or all three?

An hour later I left the club and as soon as I got home I made a note of what had happened.

I guess one way to test out the theory would be to hit the courts again in hot weather, although I obviously won’t be doing that until I’ve sought medical advice.

I’m due to see my immunologist in July so I’ll report back then.

The only concrete thing I know is that I’ll have to count myself out of a return to tennis matches for the time being.

Helen's Health, Tennis

WHAT THEY DON’T TELL YOU ABOUT LAUNCHING A BLOG

So much to SEA in the blogging world

It’s been one week since the launch of Relax Ya Self To Health.  So what have I learned? That I am, perhaps, the biggest idiot that ever lived.

The plan had been to use the blog as a way of charting my quest to relax. But the stark reality in the run-up to the big reveal was that I worked myself into the ground, and my stress levels went through the roof. Oh, the irony.

Every spare minute was spent working on the site. The posts. The images. The social media. The technical bits and bobs. I refused to rest.

“I resembled the hunchback of Notra Dame”

And on the day of the launch I was still tapping away at my keyboard at 2.30am – having turned the computer on at 5.30am the previous day.

Even a fool knows that a 21 hour stint is not sustainable – by the end I resembled the hunchback of Notra Dame complete with square eyes and a fried brain.

This madcap way of working is something I’ve grown accustomed to during my 17-year career as a freelance journalist, which is famed for its ‘feast or famine periods’.

Whereas once I used to thrive on juggling news shifts and five commissions landing on the same day, my recent health troubles have forced me to re-evaluate. The whole point of setting up this site was to learn how to relax.

Evidently, old habits die hard.

Yes, the toil was worth it because the blog achieved a little mention in the Daily Mail here – *yay* as well as from Oxford University’s Mindfulness Centre.

What’s more, I received some quite lovely messages from a number of people – including a couple based overseas – thanking me for my posts.

I felt privileged to hear your stories. Some of you are in a similar situation health-wise, others are going through different but equally stressful experiences. Firstly, I’d like to thank you for getting in touch. Secondly, I’m here to let you know that you are not alone.

If it helps, I’m going to share two messages I received from a couple of friends at the end of last week.

“Your work is really important, but not as important as you. You need a break.”

“Can you do one thing for me, please?,” the first started off. “At some point today book yourself proper downtime over the next few days to relax. No computers, phones or anything else. Your work is really important, but not as important as you. You need a break x”

The second one stated: “Can you listen to your own bloody blog and get yourself some rest?”

I heeded the advice. On Friday afternoon I gave myself permission to have an afternoon away from my desk, which is unheard of for me. I arranged a meeting with a PR by the sea. Technically, I was still working but I was away from my computer. The sun was shining. It felt GLORIOUS.

“It takes 66 days to change a habit.”

Of course, I’m not perfect. The next day I immediately slipped back into my old ways – putting in another eight hour performance. According to a 2009 University College London study, it takes 66 days to change a habit.

As  I’m determined to build relaxation into my life, I plan to post a picture on Instagram every Sunday with the hashtag #chilltimesunday in a bid to stay on track.

I’d love for you to join me and hear how you relax!

Please feel free to tag me in your posts or leave a comment below.

 

Helen's Health

WELCOME TO MY BLOG

Journalist Helen Gilbert launches health and travel blog about ways to relax

Hello. Thanks for stopping by. My name is Helen Gilbert, known to my friends as Hels.

For the past 17 years, I’ve worked as a UK-based freelance writer and editor specialising in health, fitness, travel, tennis as well as celebrity interviews for national newspapers in the UK including The Telegraph, Daily Mail, Mail on Sunday, Mail Online, and The Sun.  Click here to check out my freelance newspaper articles.

I’m a rubbish but enthusiastic surfer, slightly better paddle boarder (only just) and keen tennis player.  I ran the London Marathon once (let’s gloss over the time), am a massive fan of sunny destinations, especially Barbados (who isn’t?), beaches and love the great outdoors.

Oh, and I’m also a house bunny mummy to this little guy.

WHY NOW?

For as long as I can remember my friends have always said to me ‘you’re the busiest and healthiest person I know’. And they’re right about the first part anyway. It sounds cliched but I’ve always been a ‘glass half full’ kind of girl who thrives on being ridiculously busy. The tennis. The fitness. The clean living. The travelling. The socialising. The work. Especially the work. Oh, I’m also known as ‘Chief Agony Aunt’ among my friends and family. This is the way I operate. And I love it.

Except on the night of December 3 2015 my health took an unexpected and very frightening turn for the worst quite out of the blue. Read The Night It All Began here. The world I knew and loved was turned upside down and to this day I still remain a medical conundrum with doctors baffled by the goings on inside my body.

So now I’ve decided to blog about it. The ups. The downs. And everything in between. As well a platform for sharing my personal health story, Relax Ya Self to Health will be dedicated to all things new in the world of relaxation because, quite frankly, I’m rubbish at this. I even delay toilet breaks because I’ve too much on my plate. I know! *eye roll*.

WHAT YOU CAN EXPECT

As well as charting my quest to unwind, there’ll be interviews with well-known faces on how they cope with stress, tips on how to relax, reviews of wellbeing retreats, spas, healing holidays and the latest body-calming workouts.  Oh, and because tennis is a major source of relaxation for me (when I’m well enough to play) – there’ll be bits and bobs on this too. The plan is to help others who find it impossible to switch off, as well as those who are in the same boat health-wise.

I do hope you’ll join me for the journey.

x

P.S) I’d love to hear your stories and experiences too! If you’d like to subscribe to my blog, there’s a link here and you can also follow me on Instagram, Twitter and Facebook by clicking on the icons below. Let’s chill together!

 

 

 

 

freelance, Helen's Health

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 could barely fit 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

HOW TO TRAVEL WITH ALLERGIES: 7 MUST-READ TIPS

Ocean view Bathsheba, Barbados

I’ve always enjoyed travelling. ‘You’re always on holiday,” my friends used to quip, not realising that I’d been working 15 hour days and weekends to justify my, often very short, jaunts abroad every six weeks or so.

But when my health started playing up in December 2015, travelling was the last thing on my mind. I just wanted to get well. Then, seven months after the first allergic reaction, a travel commission came in for Barbados – a country I love and know like the back of my hand – and I couldn’t pass it up. Incidentally, Relax Ya Self is a phrase often used by locals on the island and where I got the idea for the name of this blog!

I wrote a post here on how my tongue started to swell on the eight-hour flight home. One epic fail was not to having my emergency drugs within easy reach. I know, I’m an idiot. So, I decided to make a checklist for future trips, which may help others too.

DON’T BE SHY
Tell your friends, family and fellow travellers about your allergies. Knowledge is power. They’ll need to know what you’re allergic to, the signs and symptoms to look out for, where your emergency drugs are and how to use an auto-adrenaline injector (commonly known as an Epi-Pen) if you are unable to inject yourself.

ALERT THE CABIN CREW
In my experience, the crew bend over backwards to help those with allergies. I recently flew to Tenerife with Monarch. I explained the unpredictability of my reactions, that I wouldn’t be eating on the flight because of this and reassured them that I had my emergency drugs on me and knew what to do if my tongue started to swell. The aircraft was quite empty. Guess what? They ended up moving me to an extra legroom seat at the front of the plane. It was such a kind gesture and I certainly didn’t expect it!

PREPARE YOUR OWN FOOD
Because I react to all sorts of ingredients, I now prepare my own food (in plastic containers) and forgo the meals served up by the airline. This way I know I’ll never go hungry. And I make use of the tubs again during my holiday. Not only are they super-handy if I’m out and about during the day,  it’s good to know that I can tuck into home-made food if there are no options for me on a restaurant menu (which has happened in the past!)  I just make the food in the morning. (Remember to walk with an ice pack)

CHECK THE EXPIRY DATES
Ensure your antihistamines, steroids and your auto adrenaline injector pens are in date. Often, the latter has a short shelf-life of six months.

DOUBLE UP
To be on the safe side,  I walk with two lots of medication including adrenaline pens just in case my bag goes missing or one of the pens fails to work.   Ensure they’re within easy reach and walk with a bottle of water. And if you’re in tropical climes, you’ll need to protect your adrenaline pens from the heat so remember to pack an insulated wallet or bag. I use a pretty and practical cooling pouch made by Frio.

LEARN THE LINGO
Eating out in Tenerife was particularly troublesome because I had to avoid so many foods…mature cheese, citrus fruit,  alcohol and vinegar, the latter of which popped up in everything! Fortunately, the lovely receptionist at our hotel compiled a note listing all the ingredients in Spanish together with an explanation. I carried that piece of paper everywhere I went and it gave me the confidence to eat out in restaurants.

UPDATE YOUR DETAILS
Many phones, such as the Iphone 6, have a medical ID option. Here you can list your medical conditions, allergies and reactions and any medication you take, as well as your name and date of birth. Anyone can access this information, even if your phone is locked.

 

Helen's Health, Travel

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 sat 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