Why I’m Learning To Live One Day At A Time – My story so far

Welcome

Read about my journey and why I’m learning to live one day at a time. I write in anticipation that this helps your understanding of my conditions, mainly Idiopathic Intracranial Hypertension (IIH), and how they impact my life day to day. I share my journey to raise awareness, give reassurance or practical advice. This is a story of hope, despite facing many challenges, but it’s long, so grab a cuppa and settle down. If I can help even one person with my story, then I’ve done what I’ve set out to.

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Background

I live in a small village in West Sussex, England. I trained as a teacher and specialised in Early Years. I loved my job, which I’d wanted to do from 5 years old. I’d worked hard and had made my way up to leadership. Sadly my condition meant I was dismissed amicably on medical grounds in 2016, over 2 years after falling ill.

I loved reading, travelling, Pilates, yoga, swimming, anything vintage and I occasionally wrote poetry. I did silversmithing classes (a gift from Joel) and fell in love with making jewellery. Unfortunately, I can no longer engage in these hobbies as before, but I love making jewellery (without machines) and write poetry often.

I’m married to Joel, who’s been my best friend since we met at university 21 years ago. He’s a head of function in Lloyds Banking Group and works tirelessly championing inclusion and diversity; representing carers and giving talks about mental health. He unwinds from work with his band, where he’s a songwriter and guitarist. We have two teenage sons, Zeke and Luca, who are avid gamers and musicians. They’re both focused and determined to succeed at school and life. They’re resilient, bright and grateful for what they have. We make an amazing team!

This is the story of how my life changed from being full and exciting to being mostly bed-bound, with debilitating symptoms. However, I’ve learned that I’m loved dearly by the people that matter and that I’m resilient, strong and determined.

My Story Begins
My story starts In 2009. I had my first filling, aged 32, but the next day I was struck with severe and constant facial pain. I was told I had a tooth infection, despite no evidence on X-ray, but the antibiotics didn’t help. I went to my doctor and was diagnosed with sinusitis and given more and more (etc) antibiotics. One morning, weeks later, I woke and couldn’t lift my head off the pillow. My GP diagnosed trigeminal neuralgia and prescribed a migraine preventative, which helped.

I continued to suffer daily facial pain and headaches so was referred to a consultant. He told me that my symptoms were not neuralgia, but migraines. Confused yet? I was. One year after that day at the dentist, the neurologist officially diagnosed migraine as the cause of all the pain, without sending me for any tests. I managed the pain with this preventative medication and many complementary therapies. This meant I was able to live with constant low level pain and began to enjoy life again.

In September 2012, I took a teaching job at a small village school. It was the least stressful role I’d ever had, but sadly my migraines increased in frequency and I had a flare in January 2013 and needed an increased dose of medication. A week later I was back at work and my health continued to improve. It was my favourite job, but I wanted more responsibility and with no opportunities at the school, I applied for and got a promotion at another small school in September 2013. Sadly, there was underlying stress in my work environment and  my migraines increased. I’d have attacks every weekend, so I was referred back to the neurology team.

But, on Sunday 19th January 2014, my life changed. I had what I thought was another migraine flare, so tried to return to work after a couple of days. I was in such a state within 10 minutes; everything was spinning and I ended up in tears and was sent home again. I thought I’d soon be back, but I never returned to teaching!

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My Diagnosis

I saw a neurologist urgently who was the first specialist that took me seriously in 5 years. He was the 1st doctor to order an MRI, but this was normal. So I was sent on my way to try different migraine preventatives and explore different diets. I now had a diagnosis of chronic migraine. Chronic meaning: persistent and constant!

Every new preventative meant slowly adjusting the dosage down from one, before starting another. It was a lengthy process and I was now back under the care of the  original neurologist who, along with the neurology nurse, made me feel it was all in my head! I found out more in Facebook groups and I began raising awareness of migraine on Twitter (see bio) and Facebook. But, I was always worried of the future, unable to just take each day as it came. I just knew something wasn’t right!

I spent weeks obsessively researching my symptoms, but I quickly realised what was different! I spoke to my GP about the constant, rhythmical ‘whooshing’ in my left ear, that was a new symptom. He diagnosed pulsatile tinnitus or PT (click here) and I knew this was the first piece of the puzzle. I honed my research around this

I discovered a specialist ENT doctor in Cambridge and my GP sent a referral. Soon afterwards we made the 5-6 hour round journey to my appointment. We were amazed that just by palpating my neck and taking my medical history, he gave me an initial diagnosis of Idiopathic Intracranial Hypertension (IIH). My neurologist was furious when I told him I’d seen a ENT specialist and accused me of being deceitful. I was shocked and very upset at the time, but now I know it was a silver lining!

I already had an appointment with a local headache specialist and as I believed I still suffered with migraines, I went along. She took a full medical history; going back to my childhood and told me I’d been having migraines since puberty. I was surprised, but it explained many things for me. The time I’d had off school and awful reactions to alcohol, late nights, poor diet and any food containing MSG or Monosodium Glutamate But she also refused to treat me if I continued treatment in Cambridge.

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Official Diagnosis 

Choosing Cambridge was the best decision I’ve ever made. The team were and still are changing ideas of available treatments for my condition. I felt supported and understood and was able to start living each day as it came again. IIH is a rare disease, but my symptoms present atypically and would normally be put down to migraine. Luckily, the surgeons work with me continually to improve my daily life. They made it clear that this would be a long process and that I still needed a local neurologist, just in case. I found one who agreed to have me under her care, despite not agreeing with Cambridge’s controversial methods.

Scans found that I had stenosis (abnormal narrowing) of the blood vessels inside my brain and skull. The bones at the base of my skull were constricting the jugular vein, causing restricted venous outflow. Simply put – the blood could get in, but not drain watch this video. This increases the level of cerebrospinal fluid (CSF) in my brain, causing a pressure cooker feeling inside and a vice grip outside the skull.

One evening in October 2014, I passed out for the first time ever. The next morning I began shaking and was nauseous and dizzy. I could barely move, sobbing in agony. The pain was unlike anything I’d ever experienced, so we sought medical advice. None of the off duty professionals could relieve the pain, so we headed toA&E. I arrived panicked and desperate for relief, but was given paracetamol (???). When my pain was even worse after 2 hours they agreed to give me oramorph and sent me home with enough to get me through the weekend.

On the following Monday my GP came to the house and prescribed a cocktail of strong pain relief. But, I was still struggling with the pain and had mobility, so Joel had to take a week off work to look after me. He communicated with the Cambridge team and managed to get me admitted on Friday. I had a CT scan and lumbar puncture (LP) which have me a few days relief from my symptoms. The LP drains some CSF fluid and this gives a pressure reading. Mine was borderline but it had clearly helped relieve my symptoms, so I was officially diagnosed with IIH.

Life with chronic illness

I’m still in constant daily pain and spend over 80% of my time in bed, in low light. My mobility is poor and I can’t walk unaided, as I stumble, fall and pass out. I have walkers and a stairlift to get around the house, and on the rare occasions I get out of the house; I use a wheelchair. Whilst out I have to use ear plugs and sunglasses for sound and light sensitivities. I still get very nauseous and dizzy and still have PT.

My husband is my main carer, but has a busy full time job. So my 2 boys, now 13 and 14 are young carers, helping me as needed and I also have a PA each weekday lunchtime who helps me and supports Joel with running the house. They have to ensure I eat and give me some much appreciated company. They do household jobs that I’d have done (and a bit more), such as the laundry and preparing meals.

I no longer feel as guilty about what I can’t do and am learning not to be such a perfectionist and live each day as though I’m starting afresh. I’m now much better at saving energy for my family and friends as I’m still young and want to enjoy life as much as I can, even though it takes me days to recover from any activity.

We now have our new normal and live a happy life, full of laughter. When I’m stuck in bed for weeks, it’s tough but we still try and make the most of each day. I have new hobbies such as bed yoga, meditation, writing poetry and blogging. I know I need to feel purpose each day for my mental health so I’ve also started a small jewellery business. Please do visit my Etsy shop Paprika Jewellery & Accessories

Medication and co-morbid conditions

As well as IIH and chronic migraine; I also have eczema, asthma, hypothyroidism and anxiety, which are mostly under control. I’m prone to infections and my pill box is over-spilling with medication. What I take is listed on my ‘Day in a a Life’ post (see tabs above). I have a rescue kit by my bed and in my handbag with tablets for nausea and dizziness. I still use oramorph and strong meds when I can’t sleep from the pain. My next steps are to reduce my morphine medication slowly.

I meditate and use visualisation daily and when well enough I do bed yoga and add basic Pilates exercises to my daily physio. I use alternative therapies often, using essential oils as often as possible. I invest in sessions with an amazing coach via video calls.  She’s helped me grieve for what I can no longer do and given me techniques to take each day as it comes and  keep myself in a positive headspace. My diary helps me pace myself and I record 3 positives from each day. I’ve learnt to manage my mental health, which I discuss often in my regular blog posts.

Surgery

I’ve now had brain, skull and spine surgeries. My first surgery was a right sided styloidectomy (removal of a small part of the skull behind the ear) and then I’ve had resection of the C1 vertebral mass on both sides and stenting of the left and right transverse sinus veins in the brain. This is where the venous system of the brain allows CSF to drain from the brain into the internal jugular vein. Click this link to watch a video that explains the anatomy of the venous system in the brain.

A simple explanation: I’ve had small bits of skull bone removed and stents implanted to expand the restricted veins in my brain. This allows blood and CS fluid to drain more effectively. In the words of my surgeon ‘this is a marathon’ and can’t be rushed. Each step has to be done separately so they can examine the effectiveness of each procedure and look at it in the wider context of the results from their trials.

They are now taking their findings world wide, so that this type of treatment will be more widely available one day. They’re still pioneering techniques to treat patents like me, learning from how I (and others like me) respond to each surgery. IIH is incurable, but the team hope to build a wider understanding of how to treat patients with IIH caused by restricted venous outflow and continue to share their findings.

I still have a blockage at the base of the skull, but surgery for this isn’t approved yet, so I expect to be waiting a while before anymore surgery. Now I’m focussing on reducing my morphine usage. I know that surgery always has some impact on my symptoms, enabling me to do a little more. For now, we continue to adjust our expectations and understanding as we go, but with patience and team work we hope and for a better quality of life for me and my family. For now I live one day at a time!

 

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