What is a spontaneous spinal CSF leak?

It’s so much more than a headache. It’s extremely debilitating.

When I experienced a CSF leak in 2014, I had to lie down all day every day for several months.

#leakweek2022 #csfleak #spinalCSFleak #SIH #headache

csfleak.uk/living-with-th… Sometimes people are wrongly diagnosed with postural orthostatic tachycardia syndrome #POTS when it’s actually a spinal CSF leak.

I gave a short talk at the PoTS UK London Masterclass in December 2019

#leakweek2022 #CSFleak #spinalCSFleak #SIH #headache

This little girl had an accident. Whilst riding a rusty old hand-me-down bicycle, she wasn’t strong enough or coordinated enough when going down a hill too fast. She fell off and landed on her face.

#WomenInSTEM
#AdaLovelaceDay
#AdaLovelaceDay21 🧵 She knew she lacked coordination. She couldn’t throw or catch a ball very well. She was a slow runner and rubbish at sports. Her muscles were weak and often ached. She was always the last to be picked during PE lessons. She had to stop gymnastics due to random knee dislocations.

Nutrient deficiencies and the symptoms of malnutrition massively overlap with ‘medically unexplained symptoms’ including the symptoms of #LongCovid We need to start to consider whether the underlying *cause* of these ‘medically unexplained symptoms’ relates to underlying nutritional issues.

Today is the 6-year anniversary of the start of my spontaneous spinal CSF leak. It resulted in me being bedridden/housebound for 3 months. It also led to the realisation that I have hypermobile Ehlers-Danlos syndrome. I experimented with nutrition and it changed my health/life /1 Before my CSF leak and nutritional changes, I had daily symptoms associated with my hypermobile Ehlers-Danlos syndrome (hEDS) and associated co-morbidities. So here is an explanation of the difference that a nutritional approach to managing my symptoms has had on my life /2

I spent several months bedridden and housebound in 2014 with a spontaneous spinal CSF leak, so I thought I’d share 7 things about what I learnt from the experience of being at home all day every day for several months. And 7 things about how it changed me for the better
#COVID19 1. Prioritise meals. Focus on feeding yourself in the best possible way you can afford. If you can’t already, learn to cook. Good physical and mental health start with good nutrition. I can’t stress strongly enough how important this is.

So, I’ve watched the House of Commons debate on hypermobility syndromes featuring @CWhittakerMP @JimShannonMP @HollyLynch5 and @Jochurchill4 and read the transcript. I’d like to offer some thoughts based on my background knowledge and experiences THREAD /1

https://twitter.com/hwcalderdale/status/1181498894104039425?s=20

I believe I am in a fairly unique position in my ability to comment on this topic. I’ve been a pharmacist for over 20 yrs working in or with the NHS. I have worked in community pharmacy, general practice, and as a lead primary care pharmacist, managing NHS prescribing budgets /2

@JeanneMcArdle @jenbrea @Girl_by_the_Aga @DrEReinhold @TheKyrianne @ehlersdanlosuk @GemmaSPearce @BendyBsms @DrEmBurnsEDS @drhannahshort @BluesteinLinda @GrumpyOldDoc @SunilBhanot2 @jvsimmonds01 @vikkhullar1 This is well worth a watch by Prof Rodney Grahame: Prevalence of Hypermobility vimeo.com/79844268 @JeanneMcArdle @jenbrea @Girl_by_the_Aga @DrEReinhold @TheKyrianne @ehlersdanlosuk @GemmaSPearce @BendyBsms @DrEmBurnsEDS @drhannahshort @BluesteinLinda @GrumpyOldDoc @SunilBhanot2 @jvsimmonds01 @vikkhullar1 Prof Grahame tells of the caution that should be exercised in using Beighton score as a clinical tool as it was never meant for that purpose. Hypermobility exists on a spectrum, with fit and healthy at one end and very unwell at the other...