💊 Andi Histamine, Ph.D. 📚

#MCAS 🦠 #hEDS 🧘🏻 #Dysautonomia ❤️ || #ChronicIllness Curious 👩🏻‍🏫 || Scholar w/ a Pseudonym 📝 || She/Her 🧟‍♀️

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

Hello #MastCell community! I am one of you and I am here to learn, report, advocate, and befriend. Similarly, I’d love to learn about people’s experiences with other chronic illnesses, especially those that often overlap MCAS like #EhlersDanlosSyndrome & #POTS! Please say Hi!👋🏻

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@GavinTobin @angieolygirl @Mast_Attack Intriguing! Hadn’t heard if that connection but I’d believe it. Most resources claim THC and CBD are so I wouldn’t be surprised if nicotine was also inhibiting for some ppl (maybe not for all).

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

Today’s #MastCell issues are so evidently #Prostaglandins and yet mine didn’t raise the first time around - I suspect test specificity and human error as the techs said “we’ve never run this before” ⁦@Mast_Attack⁩ always sums my life up well 😣#MCAS https://t.co/leuZ9zAh5o

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@StephanieKers20 If anyone has a solution, I’d also love to know. Heat is my number one killer 😫

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@H2OhTwist This is definitely interesting given the connections to issues like migraine and muscle spasm/dystonia. I’ve dabbled in magnesium supplementation and could never tell if it helped... I will try harder 🧐

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@EDSprblms I feel this and I’m so sorry 💔 I just want my life back... but also what does that mean if we were always destined for this?

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@bennessb Does anyone else shake? I will have these shaking episodes. Have had them since I was a kid. Not seizures (at least not known). Like intense full body cold shivers in waves brought on by cold/anxiety/stress/dehydration ... can last anywhere from 5-60 minutes. Can’t figure it out.

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@bennessb Echoing what everyone has said. Temp regulation... heat kills me, now cold does too, my toes now turn blue. Tachycardia, breathless in a flight of stairs, can’t exercise, dizzy frequently, bladder/GI stuff, widespread pain, sleep issues, etc etc etc

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@notfortoast @bennessb I feel this so deeply.

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@cmackenzies @bennessb Hello me 👋🏻

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@FandomjunkieZee @bennessb I sincerely wish I had a way to fix the heat issue. I dropped of heat stroke in 90 degree weather in 2016 and I’ve been broken ever since. It hits like 80 and I freakkkkkk out.

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@OnlyEnnui @bennessb @ahimsa_pdx Benzos are mast cell blocking so this makes a lot of sense. They help because folks with mast cell dysfunction symptoms and dysautonomia often overlap and we are often labeled as psych patients and tossed on...?... benzos. They tend to help briefly. Until our systems fold.

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@Be_Kinderr @sarahspeaksonit @bennessb Body sheds histamine at 2-3am (May differ based on your body clock) could be a factor if you also have MCAS or a histamine intolerance... gives people energy in the very least, a “second wind.” Or if you’re me it gives you low grade anaphylaxis that DEFINITELY keeps you up 😂

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@jenbrea @bennessb This! Many people have the causality mindset backwards or just not even conceptualized and either have the wrong labels (given by doctors or chosen independently) or too many diagnoses when really one or two underlying causes can explain almost all of it. It’s very aggravating.

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@Be_Kinderr @GQ802 @comalliwrites @bennessb Do you have chiari? I have small fiber + MCAS + some form of EDS (awaiting genetics) but I also have chiari (likely from EDS). I think I get this exact feeling + it’s since been isolated as atypical anaphylaxis, but I also notice it when my neck is flaring... dunno what’s what.

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@LibbyAriel @bennessb Hello me 👋🏻

[OhTWIST.bsky.social now too @H2OhTwist]

I want to start calling #EDS “Gaslighting Syndrome” if doctors don’t start believing us soon: https://t.co/N0e7mcYhhl #EDS #Hypermobility #HSD #hEDS #MedEd #MedTwitter #doctors #nurses #MedStudents #rheumatology #genetics #zebras #MCAS #MCAD

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@fhyattsgulking1 I am so sorry for your loss and for the losses of those being experienced all around the world just like this. Those that die alone and those that cannot mourn them properly. I hope time brings you some peace 💔

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@JoannaNoBanana Oh gosh I’m sorry 💔

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@angieolygirl Thank you, yes!! I do really hope this is a big moment in stepping forward toward “acceptance” for me. The peace is getting longer 🙏🏻❤️

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

I waited desperately for a rheumatologist to confirm my suspicions re: #EDS/#hEDS and when he did, I cried. Awaiting genetic testing now, and nothing has changed from a week ago, but I am different. Learning to dissociate and embrace instability, to be human. #LiveHigh #EmbraceIt

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@MackWithMast This grieving process has taken me 4 years now. All I ever wanted was to know when I’d reach acceptance. I now don’t believe anyone ever fully does, the cycles of grief just space further and further apart - peace lasts longer as you adjust to your new normal. You WILL be ok ❤️

[💊 Andi Histamine, Ph.D. 📚 @MastDisorder]

@MackWithMast i.e. when someone gets cancer, there is a socially accepted protocol of “this is what the person needs for support” - not so with the vast majority of rare and chronic illnesses, despite the fact that a shocking majority of people are affected by invisible illness.