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Jun 7 • 4 tweets • 6 min read
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

I was interviewed for the National Migraine Centre HeadsUp Podcast about my experiences with a spontaneous spinal CSF leak (Series 2, Ep 6) to help educate healthcare professionals & patients

Sometimes a #CSFleak is misdiagnosed as chronic #migraine

#headache #SIH #leakweek2022
When I was bedridden for 3 months in 2014, I developed several hypotheses. I decided to experiment on myself with dietary changes and nutrient supplements. The results were astounding!

#leakweek2022 #CSFleak #SIH #spinalCSFleak #headache #nutrition

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More from @LoveInYourTummy

Lisa Jamieson Profile picture
Oct 12, 2021
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 🧵 ImageImage
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.
She got back on the bike. She kept trying until she found her confidence. When she realised that she enjoyed swimming, roller-skating, ice-skating, dancing (and later, nightclubbing) more than cycling, she chose to do what made her happier. The random knee dislocations continued.
Read 20 tweets
Lisa Jamieson Profile picture
Jun 12, 2021
Nutrient deficiencies and the symptoms of malnutrition massively overlap with ‘medically unexplained symptoms’ including the symptoms of #LongCovid Image
We need to start to consider whether the underlying *cause* of these ‘medically unexplained symptoms’ relates to underlying nutritional issues. Image
Women between the ages of 15-50y are at risk of malnutrition because of periods, pregnancy and breastfeeding, when nutrients are lost via menstruation or transferred to a baby. Image
Read 6 tweets
Lisa Jamieson Profile picture
Apr 14, 2020
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
Before nutritional changes:
I regularly had musculoskeletal pain, in different muscles/joints. I would get tired easily, had weak muscles, and was often fatigued
After nutritional changes:
No longer have muscle/joint pain, have more energy, and I’m fitter than I’ve ever been /3
Read 25 tweets
Lisa Jamieson Profile picture
Mar 24, 2020
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.
2. Develop a routine. Get up, get dressed and make your bed as though you are going about your life in a ‘normal’ way. I had to lie down for most of the day due to my illness, but I never stayed in my pyjamas. This made me feel more ‘normal’.
Read 19 tweets
Lisa Jamieson Profile picture
Oct 12, 2019
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
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
I have also worked in NHS clinical commissioning in planned care service redesign, including working on specialties such as orthopaedics, dermatology, gynaecology, and service transformation. I have also worked in research. /3 linkedin.com/in/lisa-jamies…
Read 29 tweets
Lisa Jamieson Profile picture
Oct 19, 2018
@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...
@JeanneMcArdle @jenbrea @Girl_by_the_Aga @DrEReinhold @TheKyrianne @ehlersdanlosuk @GemmaSPearce @BendyBsms @DrEmBurnsEDS @drhannahshort @BluesteinLinda @GrumpyOldDoc @SunilBhanot2 @jvsimmonds01 @vikkhullar1 My hypothesis is that it’s possible for an individual to move back and forth along the spectrum, related to environmental triggers and changes in nutritional status, amongst other things:
Read 4 tweets

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