In the summer of 2020, I started to experience new and debilitating symptoms. My head has always been where my MPN has manifest itself through years of migraine with aura, which stopped when I was diagnosed with ET and started taking Clopidogrel. But three unexpected migraine attacks in quick succession in the pandemic set off a chain reaction of nauseating burning sensations that turned into indescribable shooting pains through my scalp and back of my head. Symptoms which lasted for weeks and persisted through the day and night.
Amitriptyline, prescribed for a diagnosis of neuropathic pain, was a miracle, turning off the pain like a light switch. However, slowly increasing the number of tablets to find the correct dosage was difficult as I’d go 2 months or so pain free, before falling off a cliff again and needing to up the dose.
By the following spring, I had just about reached the sweet spot, but still experienced persistent tingling in my temple and strange crawling sensations over my scalp.
In the midst of climbing this dosage ladder, my family and I had been trying to read up on MPNs and neurology – anything that might help explain and relieve the symptoms. During this time, we’d come across a number of videos and articles about ‘self-help’ measures to reduce MPN symptoms more broadly.
One of which was diet.
Having attended a number of MPN Voice patient forums, I knew that diet was often a hot topic of discussion within the community.
Patients, whether newly diagnosed or many years down the line, frequently asked whether there was any recommended diet they should follow.
Although always interested in these Q&As and curious as to what different patients were trying, I’d never really given diet much thought. Particularly because after suffering with migraines from a young age, I’d already cut out common ‘trigger’ foods and continued to follow a healthy, balanced diet in an effort to prevent them returning. As a result, I didn’t think a change of diet was really necessary, and after the life-changing benefits brought by Clopidogrel, I had no reason to try anything different.
That all changed in 2020 with the onset of neuropathic pain and so we looked anew at ‘non-pharmacological’ approaches to MPN and guidance suggesting an anti-inflammatory, Mediterranean-diet may be beneficial.
The key author we came across in this area was Dr Angela Fleischman who is based at the University of California Irvine and has been researching the relationship between nutrition and MPNs.
In numerous videos and online articles, Dr Fleischman explained how MPNs are chronic inflammatory diseases with inflammatory cytokines likely driving symptoms and disease progression. Her thinking around dietary intervention in MPNs builds on research that explores the positive impact of a Mediterranean diet in patients with cardiovascular diseases which are similarly characterised by chronic inflammation. Her hypothesis is that similarly following a Mediterranean diet might reduce inflammatory cytokines in MPN patients, relieving symptom burdens and potentially halting disease trajectories.
Particularly interesting was a lecture I found on YouTube in which Dr Fleischman talked through the results of her preliminary feasibility study. This assessed adherence among 30 MPN patients to a Mediterranean diet, and after just 9 weeks, she identified a 42% reduction in their baseline symptoms; comparable, she argued, to research that measures the impact of cytoreductive therapies on reducing patients’ symptom burdens.
Still experiencing tingling and occasional burning, I therefore decided to give the Mediterranean diet a try. I had nothing to lose and if it didn’t have any effect, then I reasoned I’d continue on the path towards potentially trialing a treatment for my ET.
And so, overnight, my family and I switched to an anti-inflammatory diet.
We continued to eat fish but cut out all other meat. I said a fond farewell to my all-time favourite, spaghetti bolognese, and wondered, 6 months early, whether a Christmas dinner could ever be complete without a tray of pigs in blankets.
Gone were the days of a sausage, mash and peas dinner. Or a tomato, pasta, and bacon lunch. And in was a whole new regime of vegetables, lentils, beans, and pulses.
I’d read about the importance of B vitamins and particularly, vitamin B12, for the nervous system and nerve health and repair. A quick Google suggested I try Marmite, so I decided to add it to my breakfast slice of toast. My friends now joke I am living proof you can defy the science of either ‘loving Marmite or hating it’ as I went from finding the spread borderline inedible to genuinely looking forward to it!
Nuts also came up high on the list for B vitamins. So I added a handful of cashews to my breakfast bowl of Special K (which I couldn’t bear to part with) and banana.
We had risottos, fish pies, and homemade soups. Everything from artichoke and courgette pasta dishes to salmon and asparagus dinners.
The impact – within just a couple of weeks – was incredible.
For the first time in almost a year, I went from having daily background neurology symptoms to virtually no symptoms at all; and the longer we continued with the Mediterranean diet, the better my head became.
I liked to think of the diet in terms of helping my Amitriptyline along. A partnership that aided its work, rather than making it push water uphill.
The results confirmed to me the value of Dr Fleischman’s work on chronic inflammation in MPNs. The past few months were living proof that even though I had previously followed a healthy well-balanced diet, it wasn’t enough to prevent my head symptoms from one day tipping over the edge.
But that isn’t to say a change of diet is for everyone. Following the advice of your haematologist, GP, and nurse is paramount. And even though diet is framed as a low-cost, low-risk intervention, there’s no denying that it takes time and energy.
It also isn’t straightforward or realistic for everyone to cut out all inflammatory foods and ingredients. You might have school dinners and be limited to the meal choices on offer. The same story if you’re at university and living in student halls. Daily fry-ups and a side order of chips don’t exactly fit the bill! It’s also challenging if you go out for dinner with friends or work colleagues. The frantic menu scan to see something – anything – that isn’t meat-based or inflammatory.
But things are changing and plant-based, meat alternatives are becoming more and more popular. Especially as consumers are increasingly environmentally-conscious and planet-friendly. I’ve lost count of the number of plant substitutes we’ve now tried which have all been delicious. Burgers don’t have to be a thing of the past and we’ve found that in many cases, you can hardly taste the difference!
Even though we completely overhauled our diet in a desperate attempt to get my head symptoms on a more even keel, I’m sure many dieticians would advocate everything in moderation and even a small transition towards a more Mediterranean-style diet could be beneficial.
I wonder if I’d adopted this diet when I was first diagnosed with ET six years ago whether I could have prevented the neuropathic pain from ever occurring.
Either way, I know now if there’s even the slightest chance that chopping out red meat and introducing a few more vegetarian meals could reduce inflammation in the body, improve symptoms and potentially alter the course of an MPN, then it’s certainly worth a try.
Having an MPN can sometimes feel overwhelming, like you have no control or power over what’s happening inside. This is especially true on ‘watch and wait’ which can feel like you’re a ticking time bomb, doing little to address your diagnosis or change the course of action ahead.
Following an anti-inflammatory diet could be a small, positive step towards taking charge of an MPN. Yoga, meditation, and gentle exercise are often discussed in this context too.
And it’s not all quinoa salads.
Walnut and lentil bolognese is now giving ‘spag bol’ a run for its money in our house.
And after a salmon Christmas dinner, I didn’t miss pigs in blankets after all.
In a new fundraising initiative, MPN Voice is producing a recipe book made up of MPN patients’ favourite anti-inflammatory, Mediterranean-style recipes. The charity hopes that this will be a fantastic resource for patients already following this diet, as well as for those thinking about trying it but aren’t sure where to begin. Keep your eyes peeled for updates over the coming weeks and for an official call out when you’ll be able to send in your special recipe…
Alice will be along next month with another blog post about young MPN patient experiences. You can contact Alice by email – firstname.lastname@example.org .