Anaphylaxis

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I’m new here!

Hi, my name is KyleBriz. I've been diagnosed with WDEIA (wheat dependent exercise induced anaphylaxis) and I’m not sure how to change my diet to keep from having anaphylaxis

#MightyTogether

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Sagging Face

Any other senior Zebras out there whose face suddenly sagged?
I have always looked younger than my age until I reached my 50s and all of a sudden the skin laxity kicked in and my face drooped.

Because I have mast cell activation syndrome and a history of infections and anaphylaxis — plus extremely fragile thin skin that is prone poor wound healing (e.g., stitches popped or became embedded, abnormal scarring, takes longer to heal, etc.) —I can’t get the same cosmetic treatments others can but am desperate not to look like a SharPei.

Anyone over 52 with a similar history have any practical solutions? I did terribly with laser in the past as it caused immense scarring and didn’t even help my issue.

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MCAS

My daughter has dysautonomia, Raynauds, GERD, autism and more. She shows symptoms of MCAS, but no anaphylaxis or severe reactions. She has flushing, skin rashes to basically everything her skin touches, and itchiness. Could this be MCAS? #POTS #MastCellActivationDisorder #Dysautonomia

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A bit of a struggle

I am tapering off of my benzodiazapine on my own without any other meds because I get Anaphylaxis to everything. I still have no doctors to treat me or to even test ne for a diagnosis and its been years. I weigh my crushed pill powder and measure out what i need daily on a mg scale. I am noticing so many great things about coming off of a ben so like just being able to process simple things in life, but the rage has returned. I find myself getting triggered more easily, and that anger in my gut feels like it’s there to stay and I need to find a way to release it. I have been so angry and unable to release it a matter how many times I’ve tried. Angry at the medical community for trying to murder me (as my brain tells me) I have medically related PTSD as well as 17 years of childhood trauma and every time I go to a doctors office they’re mean to me and it triggers me into a full PTSD attack. On top of that I am also taking care of my dad on hospice, who I am up with around the clock, while he has psychotic fits constantly because of his brain tumor, but he abused me for so many years growing up that even that triggers me and I have to keep my distance from him when really all I want to do is help him. Everything seems to be triggering me more than usual. Not always into a full PTSD attack, but I will sit around with adrenaline pumping through my body most of the day. I’m trying to figure out ways that I can teach myself how to deal with all of this. Doing my best to stay in alignment with love and peace. ❤️#CPTSD #ChronicIllness #Dysautonomia #MastCellActivationDisorder

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The only help was available

I had gotten dysautonomia after a doctor gave me the wrong medication back in 2007 that caused temporary psychosis and I was left with nervous system damage that nobody could even tell me about. As time went on, I stopped being able to eat because of the severe pain, nausea and vomiting that would occur from it, before developing what i now know its POTS. For over 10 years, every cardiologist i went to refused to test me claiming that it was either all in my head or that I was too young to have a heart issue. I began fainting constantly and having SVT episodes but I didn’t even know that it was SVT until years later because doctors and hospitals just don’t care. One time, i went to the hospital after having a severe svt and my blood pressure dropping and staying low at 62/45. Instead of helping me or even taking my blood pressure, the er staff punished me but tieing me to a bed even though i was not acting like a psych patient, and sending me off in an ambulance after injecting my arm with a intense dose of Ativan even though I was fine and willing to go, to A psychiatric hospital. The therapist there didnt even know why i was there because i was emotionally fine. Unfortunatly for me, having this on my record would make it completly impossible to get any doctor care whatsoever in the future for my illness. For some reason in the good ole USA, mental health discrimination is a severe issue in the medical field. If you were ever diagnosed with anything such as anxiety, you will be written off as crazy. I ended up having an ischemic heart attack and my heart almost exploded from having an SVT but according to Dr. staff it’s always all in my head. I became bedbound for years. Every friend but one deserted me or bullied me. My family hated me. I woupd just lay in bed staring at the ceiling day and a day out praying for death. I ended up getting two ablations on my heart tht saved me and i had to teach myself how to walk. The day I used my walker to walk to the house next-door and back was the best day of my life and I filmed it and posted it on Facebook. All i got was an inbox of harassment and bullying for it from those are used to consider to be my best friends, my sister. Just when I thought I was getting better I suddenly started getting anaphylaxis to all my food. Trying to explain this to ER staff kept landing mean in the psych section of a hospital, being interrogated instead of helped. I’ve been thrown out of wheelchairs because they didn’t believe parts was real at a hospital in front of many people and nobody cared. I was always left shaking and crying on the floor somewhere well passerby‘s just look at me like I’m crazy because I’m terrified of the nurses because they are bullying me and abusing me. There is absolutely no way to sue nurses doctors or hospitals nowadays. And they know it otherwise they wouldn’t do this stuff all the time because it’s not just happening to me. One time, i had to camp in a hospital parkinglot because I had not eaten in six weeks because everything I put into my mouth caused severe anaphylaxis and I couldn’t keep injecting myself with EpiPen‘s. The hospital refused to help me so I camped there. On the fourth day, I started getting anaphylaxis after taking the medicine that I’m supposed to take every day and have been for years. I went inside of the hospital clenching my neck at the front desk all the way to you laughed hysterically with a friend of hers on her phone while I was frantically motioning to her to help. She gave me a dirty look and turned the opposite direction. I started panicking because who wouldn’t? Only was completely ignoring me and thought my suffering was funny. She didn’t turn around and woth a sarcastic rude voice said, “ughhh can i help you??” I could barely talk at this point but I couldn’t see straight because my blood pressure had dropped and I was trying to tell her that I need an EpiPen and she kept chewing her gum and snapping at me, “well we cant save you unless you sign in” she knew I couldn’t sign in. What are they do for trauma victims who can’t sign themselves in? refuse to save their life? I tried to sign and I kept falling over a little bit and I couldn’t see the paper and I was frantically trying to breathe and so I fell on the ground. She nonchalantly said “well then i guess you dont get help then oh well” and went back to chatting on her phone and laughing. I was going to die. I was surrounded by people and again no one cared. Two male nurses came out looking down at me shaking and crying on the floor trying to breathe while I was gasping for air. “ oh your fine you’re still kind of breathing hahaha!” They came in raged that they were murdering me. Well I was struggling to stay alive and in a rage and fight for my life, I was crying hysterically so they had security physically pick me up and throw me out the door onto the concrete which spilled all the contents of my purse all over the ground and I laid on the ground scraped up and bruised from them just dying in the sun while two ambulances were right next to me woth ems crew in them, and nirses and people walking right by me. Everything started going black. Just a passerby stabs my leg with her EpiPen. All of those people still work there. Nobody cares. I think getting treatment for PTSD from it all but unfortunately every time I have to go to a doctor or hospital I have to face the ones that tried to kill me. Every time I have a new doctors appointment I already know that I’m going to be bullied and I always am Which causes another PTSD attack and then I am the one looked at his crazy when they’re the ones that don’t do the job. I am seeing it from so many people nowadays more so than ever. This happens to people at such a high rate and it’s not being talked about and nothing is being done about it which is why I decided to write a book all about it. Im still working on this medical book which also has interviews with doctors and patients in it. It needs to be talked about because it’s not just us that deal with it it’s at an alarming high rate. I suspect that I have mast cell activation syndrome but I’ll never know because every doctor bullies me about it. I even was sent out to get a bone marrow biopsy but the guy performing the biopsy laughed in my face and called me a joke and I wasn’t able to get it. I’ve had swollen lymph nodes for years that have never gone down and I went to get a biopsy of it and was bullied horrendously for it while they told me it was probably just a cold even though it’s my doctor that sent me out for the test. In fact in all of these years I have only come across two out of thousands of different kinds of doctors and nurses that were actually decent human beings. It doesn’t matter if they can help me at all, what matters is they treated me like a human being. If you don’t know and you know you can’t help me tell me that don’t bully me because you don’t want your egos crushed. Majority of us had to become our own doctors so in many ways yes we are the experts. I think a lot of doctors are put off by this but it’s just the truth. We the patient, are the ones that spend years upon years studying medical journals studying the brain studying cells in the body studying odd illnesses from refutable doctors around the world and their writings, we have learned how to read MRIs and such why? Because we are our only advocates and we are the only ones that are onto something. We know so much about our own illnesses that doctors need to give up their ego trips and learn from us. Another thing I need to tell people is I’ve learned that if you ever get a test done, always go pick up every copy you can of the results because the doctors will nine times out of 10 always lie to you about your test results.

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Archer introduction!

Hello my name is Archer Eli (he/him) I am 19…And I created this group :)))

I struggle from several chronic illnesses including : POTS ,MCAS ,EDS , gastroparesis , vasovagal syncope, idiopathic anaphylaxis and I have some unexplained symptoms. I have a central line port and often use mobility aids!

(The picture is of me and my cat Hobbes)
#introduction

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Looking for Resources

I have had these symptoms for years. They come and go. Recently I had multiple anaphylaxis. I would like to post additional pics for resouces

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