Karina Wagenpfeil

Scientist turned ME/CFS, MCAS, POTS, and EDS patient. Interested in patient advocacy. Strong supporter of biomedical research. Blog when my health allows.

[Karina Wagenpfeil @ChronicKarina]

@allylovespono I love homemade flaxseed gel. 1/4 cup flax seeds boiled for 10min in 2cups of water. Pour through a strainer while still piping hot. Store in fridge up to 2 weeks. 20min hair mask before washing hair. It has made a big difference in just a few uses.

[Karina Wagenpfeil @ChronicKarina]

@amaranthjimin Apparently satellites launched by SpaceX

[Karina Wagenpfeil @ChronicKarina]

@ahriion Yes! Apparently it is a string of satellites that SpaceX recently launched

[Karina Wagenpfeil @ChronicKarina]

@jsimms32 SpaceX launched 60 satellites 4 days ago. Maybe it’s them

[#MEAction Network UK @MEActNetUK]

A please and thank you tweet...

Please RT and

Thank you for your stories -
keep them coming so we can
#StopGET for #pwME

[Greta Thunberg @GretaThunberg]

When haters go after your looks and differences, it means they have nowhere left to go. And then you know you’re winning!
I have Aspergers and that means I’m sometimes a bit different from the norm. And - given the right circumstances- being different is a superpower.
#aspiepower

[#MEAction Network UK @MEActNetUK]

Update. Gigi's family are launching an urgent appeal to find lawyers to help. She's 17 and on the Children's Ward in Lewisham Hospital with ME. Her family are fighting to get her home but her pain medication has been withdrawn and she's in extreme pain.

https://t.co/uHZWMqLUAz

[Karina Wagenpfeil @ChronicKarina]

@SimonoffBob @JenMichelleCrow Taking it regularly, and being really really good about always taking it 4 times a day, has definitely helped me. I eat twice a day and take cromolyn 4 times a day. I think our GI mast cells can be misbehaving all day, food or no food

[Karina Wagenpfeil @ChronicKarina]

@PKhakpour Yay!!! So glad you found s place! I hope it turns out to be a healing location for you

[Karina Wagenpfeil @ChronicKarina]

@Julia47709247 That is remarkable! I’m so happy for you!!!

[Karina Wagenpfeil @ChronicKarina]

@PKhakpour Cromolyn has helped my CCI symptoms immensely. I can have my intracranial pressure spike and CCI symptoms increase rapidly during some MCAS reactions

[Karina Wagenpfeil @ChronicKarina]

@jenbrea @jenna_payne @PKhakpour @jeff_says_that I’ve heard of some people using IM benadryl during reactions. I wonder if that would work as well for you as IV

[Karina Wagenpfeil @ChronicKarina]

@PKhakpour @jenbrea @jenna_payne @jeff_says_that In really severe MCAS cases, some people get on continuous benadryl pumps, so continuous slow drip IV benadryl 24/7. No one who has started that has ever succefully come off of it. But for some it is the only way to stabilize

[Karina Wagenpfeil @ChronicKarina]

@PKhakpour @jenbrea @jenna_payne @jeff_says_that The main risk with benadryl is that it will stop working and then you won’t have a rescue drug. In some people, it also causes rebound reactions, so 4hrs or so after they take it, their symptoms come roaring back and they end up on an endless loop of reactions.

[Laura Elliott @TinyWriterLaura]

i’m too sick to do much with this right now but any UK journos in my network, jump on this please 👇

[Karina Wagenpfeil @ChronicKarina]

@ALifeHidden Wow, excellent writing

[Karina Wagenpfeil @ChronicKarina]

@ThornyLin @catedempsey Have you tried cromolyn sodium? Might be harder to get a doctor to prescribe, but it may help if it’s a mast cell issue. So sorry your child is going through this!