Sarah

#POTS #MastCellActivation #glutenfree

Newsletter 👉 (very, very few emails)

@planmadesystem (sorry, isn't updated anymore)

[Sarah @SarahFrisonHC]

@UntoNuggan This is why I love the #neisvoid on here, people who just break down this super niche thing that might just have a nugget of useful info in it that you can build on.
@UntoNuggan what were the symptoms that lead to being able to get Xolair? It seems it's just skin stuff here.

[Sarah ♿️ @fromsarahlex]

I’m less than £1.5k away from my £13k target for my new powerchair 👩🏻‍🦼

My current powerchair causes me so much pain and is dangerous to use.

I’m so close now - Please help me get there https://t.co/89giVUZDd3 #MutualAidRequest #DisabilityCrowdFund

[Sarah @SarahFrisonHC]

@davidschwertfe2 mast cell stabilizers have worked well for me so my doctor is confident in the mast cell activation part.

[Sarah @SarahFrisonHC]

People in the void, please help! I started reacting to various laundry items and whatever it is seems to have spread. It started with a duvet cover and now it's everything washed. I haven't got anything to wear left, washed in the last days = burning skin. #NEISvoid 1/3

[Sarah @SarahFrisonHC]

I don't know what to do anymore so any guidance please. #MCAS #mold 3/3

[Sarah @SarahFrisonHC]

tried: various ways to clean washing machine, smell stays. Strip wash with tap water, bicarb and vinegar, same result. Strip wash with filtered water, bicarb and vinegar, smell is gone and no reaction, yay! Problem: few hours later smell is back and burns worse. 2/3

[Sarah @SarahFrisonHC]

@alexhaagaard Thanks, yes, confirmed mast cell issues :) .

[Sarah @SarahFrisonHC]

@alexhaagaard and measure before I try a new thing to see what my baseline is, if there's anything to see at all!

[Sarah @SarahFrisonHC]

@alexhaagaard Thank you! I'll take a look. I totally miss-remembered it then! Somehow my brain thought you had tried a sleep tracker first and it had shown sleep issues and were confirmed in a sleep study🤷‍♀️. I am trying to figure out what's going on with my sleep, see if it's a mast cell thing

[Sarah @SarahFrisonHC]

@alexhaagaard @alexhaagaard something else but was it you who found they didn't have REM sleep? I remember reading an interview on the NEISvoid website and thought it was with you but I might have two people mixed up. If it was you, can I ask what tracker you used to show REM sleep? Thanks!

[Sarah @SarahFrisonHC]

@alexhaagaard (obviously that was an exaggeration, it would be very painful but all body parts would probably stay in place. Just to clarify in case people don't get my at-times inappropriate humor)

[Sarah @SarahFrisonHC]

@RaiinbowEyes Milk in a bowl helps too but I've only used it for small bits (one painted wall or a room you don't have to go in). Obviously switch out the milk before it goes sour! And don't smell the milk because it will smell like the chemicals.

[Sarah @SarahFrisonHC]

People who track their REM sleep, what do you use? Smartwatch? Good ones/ones to avoid? Also with skin that reacts to a lot of stuff. Thanks! #NEISvoid

[Sarah @SarahFrisonHC]

@ewshesafeminist Milk in a bowl helps with chemical smells, I've used it with paint before. Do replace the milk once in a while or create more smells 😂.

[Sarah @SarahFrisonHC]

@FeralGirlLife POTS looks similar, white spots are a bit bigger though but can happen on legs, arms...

[Sarah @SarahFrisonHC]

@JBOccyTherapy Thanks! I'll take a look at that one :) . So many options!

[Sarah @SarahFrisonHC]

@endeverstar yes, when pulse is high to start with and then settles it stays the same sort of feeling here.
(see how I had to write that to not make it triggering for me 😂).

[Sarah @SarahFrisonHC]

@ewshesafeminist mix with syrup? 50/50 sugar and water, bring to a boil until thicker (but not caramel!), leave to cool and mix it in? Just a thought!

[Sarah @SarahFrisonHC]

@LilNight7 melatonin is prescription-only in the UK so you'd need to get it from a gp or other doctor. Not sure what happens if you order it from another country. Didn't know it helps with brain fog? Just sleep as far as I knew. Pacing and the right meds help.