My story so far: Migraine, IIH and more. Learning to live one day at a time……

Welcome

Read about my journey and get the latest updates below. I write in anticipation that this helps understanding of my conditions, mainly Idiopathic Intracranial Hypertension (IIH), and how they impact my daily life. 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.

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, vintage style and occasionally wrote poetry. I’d been taking silversmithing classes and fell in love with making jewellery. Unfortunately, I can no longer engage in these hobbies as I’d done before, but I love making jewellery (without machines) and write poetry more seriously.

I’ve been 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. It’s a demanding role but he unwinds with his band, as 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 in life. They’re resilient, bright and grateful for the life 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
My story starts In 2009. The day after I had my first filling, aged 32, I was struck with severe and constant facial pain. I was told it was a tooth infection, despite no evidence on X-ray. When the antibiotics didn’t help I was diagnosed with sinusitis but weeks later, I was still in intense pain. I managed to return to my job, until one morning when I couldn’t lift my head off of the pillow. My GP diagnosed trigeminal neuralgia and prescribed a migraine preventative and a few weeks later I returned to teaching

I continued to suffer daily facial pain and headaches so was referred back to a consultant. At my appointment, months later, I was told that my symptoms were caused by migraines. Confused yet? I was. Nearly a year after that day at the dentist, I saw a neurologist who officially diagnosed migraine as the cause of all the pain, despite having no tests. Thankfully, I’d been well supported by my family doctor (GP) who managed my preventative medication. I also invested in complementary therapies and learnt to live with constant low level pain and enjoy life again.

In September 2012, I began teaching at a small village school with a wonderful community. It was the least stressful and job I’d ever had, but my migraines increased in frequency and I had a week long flare in January 2013. Thankfully, my body responded quickly to the increased dose of preventative medication and I was back loving life. However, I realised I wanted more job responsibility and got a promotion at my first choice of school in September 2013. Sadly, my migraines increased to weekly attacks and it was so bad, that I was referred back to the neurology team.

On Sunday 19th January 2014, I had a severe migrainous attack, but despite pushing myself to return to work, I was sent home within 30 minutes. Thinking it was just another flare and that I’d soon be on top of it, I had no idea that my life had changed.

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Diagnosis

I saw a neurologist urgently who first specialist that I took me seriously. After 5 years of pain and suffering, he was the only doctor to order an MRI, but it didn’t show anything unexpected. So I continued treating chronic migraine with different diets, pain relief, alternative therapies. and every migraine drug out there.

Every new preventative meant slowly adjust the dosage down from one, before starting another. It was a lengthy process and I was back under the care of my original consultant who, along with the neurology nurse, made me feel it was all in my head! I was frustrated by the lack of support. So, I began raising awareness of migraine on Twitter (see bio) and persevering in trying to find answers in Facebook groups.

A few weeks later, I’d researched enough to speak to my GP about the constant, rhythmical ‘whooshing’ in my left ear, that I’d not had before. He diagnosed subjective pulsatile tinnitus or PT (click here) and I knew instantly this was the first piece of the puzzle. My GP referred to a specialist ENT doctor I’d found in Cambridge.  When we made the 5-6 hour round journey to the appointment, we were surprised that just by palpating my neck and taking my medical history, he was quite sure I had Idiopathic Intracranial Hypertension (IIH). My local neurologist washed his hands of me when I told him who I’d seen this ENT specialist and accused me of being deceitful. I was shocked and very upset by this continued disregard. Now I think it was a silver lining!

I already had an appointment with a local headache specialist, so I decided to go ahead with the consultation, as I believed I still suffered with migraines. She took a full medical history; going back to my childhood and told me I’d been having migraines since puberty, which was a shock, but explained why I’d had so much time off school. In my late teens alcohol, late nights, poor eating habits and awful reactions to food containing Monosodium Glutamate/MSG all led to atypical migraines. But this neurologist also politely refused to treat me if I continued treatment in Cambridge.

Official Diagnosis 

I chose Cambridge, of course, and was so relieved to be under the care of a team, who truly understood my condition. They’re the world’s only team treating those who present with IIH symptoms the way I do. It’s a rare disease, so I knew there weren’t many of us. I still needed a local neurologist and found one who lets me be under her care, despite not agreeing with my Cambridge team’s, often controversial, methods.

The 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-spinal fluid (CSF) in my brain, causing a pressure cooker feeling inside and a vice grip outside the skull.

Then on a day in Autumn 2014, I passed out for the first time ever. The next morning I felt awful and was shaking, nauseous and very dizzy. I could barely move and was sobbing in agony. The pain was like nothing I’d experienced, so we sought medical advice. Both a GP and paramedic came out, but neither couldn’t help relieve my pain. In the end we went to A&E and I arrived panicked and desperate for relief. After 2 hours waiting to see if paracetamol helped (???), they sent me home with oramorph to get me through the weekend. When my GP came out to me, he was amazing and prescribed a cocktail of strong pain relief.

I was still struggling with the pain and mobility and Joel had to take the week off of work to look after me. He was in constant contact with Cambridge and managed to get me admitted that Friday. It was a tortuous drive, but the tests were vital for moving forwards. I had a lumbar puncture and a CT scan and had a few days relief from all my symptoms. Due to the impact of draining some CSF fluid, even though it was a borderline reading, it was obvious it had helped, 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. I also have professional care from a PA each weekday lunchtime to help me and support Joel with the running of the house. They ensure that 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, tidying up and preparing meals. We also employ a cleaner, to take as much strain off Joel as possible.

I no longer feel as guilty about what I can’t do and am learning not to be such a perfectionist. I’m now much better at saving my energy for my family and friends. It still takes me days to recover from a trip out or from having visitors, but I’m determined to live life to the fullest I can. We’ve learnt to live our new normal and have a happy life, full of laughter. But it’s still tough when I’ve been stuck in bed for weeks. I can’t do the hobbies I used to, so now I practice meditation, write poetry and blog for my mental health. I’ve also turned making jewellery and accessories. into a small 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, anxiety, and vitamin D deficiency 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). I have a rescue kit by my bed and in my handbag with tablets for nausea and dizziness.. I still use oramorph and a strong meds when I can’t sleep from high 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 and also have reiki sessions when I can afford to. I invest in sessions with a coach via video calls and she has helped me grieve for what I can no longer do and given me techniques to use daily to keep myself in a positive headspace. This and using a diary to pace my time and record daily positives help me to maintain good mental health. I talk a lot about this 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 is that I’ve had small bits of skull bone removed and stents implanted in my brain to expand the restricted veins. This allows blood and 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 understand how effective each procedure has been and then look at it in the wider context of the results from their trials. This is an atypical presentation in IIH patients, which is already a rare disease.

They are now taking their findings world wide, so that this type of treatment will be more widely available one day. The team are still pioneering techniques to treat patents like me, so although IIH is incurable, my experiences help them build a wider understanding of how to treat patients with IIH caused by restricted venous outflow.

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, so I’ll be focussing on reducing morphine dosage. Each surgery has had some impact on my symptoms, enabling me to do a little more each time. For now, we continue to adjust our expectations and understanding as we go. There are no quick fixes, but we do know each procedure and operation moves us a step closer to a better quality of life for me and my family.

 

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