empowering people with life threatening food allergies

What does Anaphylaxis feel like?

I’ve had two major anaphylactic reactions in my life (not including close calls)–once, when I was a baby, when we all found out I had a life threatening peanut allergy. The other experience occurred about two years ago. I remember how I felt during this reaction very, very clearly.

 

Parents often ask me, “what does anaphylaxis feel like?” Well, for starters, I can answer, “not good.” My body has an immediate, visceral, negative reaction to all things peanut, starting when I walk by a bowl of peanuts sitting out at a party or if someone starts to eat a peanut butter and jelly sandwich next to me. I immediately sense the allergen and a knowing that this thing is bad for me.

 

I like to travel. I’ve been all over the world and have visited many countries, for the most part unscathed. I’ve been to India many times and have grown up eating and cooking various North Indian dishes. In December of 2005, I attended a family wedding near New Delhi. Indian weddings are great–huge, multi-day family affairs, fancy events, singing, dancing, elephants, horses, and delicious food.

 

Dressed to the nines, my family and I arrived at the main event—a beautiful, outdoor, evening party with waiters carrying around trays of fresh drinks and appetizers—small tented, fire pits scattered throughout the venue, a large, lighted stage set up for the bride and groom. I left my purse in the car—I didn’t want to have to carry it around all night and the driver went ahead and parked it near the other vehicles.

 

The appetizers looked good, and I was hungry. I’d been eating this food my whole life. I was sure it was safe. I picked one from the tray. I asked my sister, “No peanuts, right?” after she ate one. She said, “No, it’s just a pakora.” I said, “cool,” gave it a sniff test and popped it in my mouth. Didn’t taste like anything peanut, just really spicy. At once, I knew that was not the case.

 

My mouth started reacting immediately, as it always does even when a particle of peanut touches it—I started salivating to the point where I needed to spit every couple minutes. My ears starting feeling itchy. Overall, I felt “not good.”

 

I didn’t know how much peanut I had ingested. At that point, I learned that in India, in wedding food, sometimes catering companies will use peanut flour in dishes instead of regular flour because it’s cheaper.

 

In the past, if I had eaten a tiny bit of peanut, like some dust, I was usually okay, albeit a lot of salivation and feeling uncomfortable, sometimes with a stomach ache for a few hours. I tried to ride this one out too. I kept spitting saliva into a glass, dumping it out once it got too full.

 

I kept feeling worse and worse. And, I clearly wasn’t making good decisions for myself. My mother said I should give myself an Epi-pen. Well, I had one Epi-pen with me and it was in the car in my purse. The car was parked in a sea of vehicles that all looked the same. My father and sister set off on finding the driver, car, and Epi-pen. They found it after about 20 minutes. At this point, about 45 minutes had past, since I had eaten the appetizer.

 

We decided to go back to the hotel where we were staying. I had one more Epi-pen there. There was also a hospital across the street from the hotel. As soon as we got into the car, I gave myself the first Epi-pen. In the past, that’s all I needed. We arrived at the hotel in ten minutes and I changed my clothes. I took some Benadryl and some Prednisone we had. [please note: the family members with me are doctors]. About a minute later, my head started to get really, really itchy—my scalp had broken out in huge hives—this had never happened to me before in all the times I had had exposure to peanut.

 

We decided to quickly go to the hospital—thank goodness there was one so close. We arrived to a completely empty emergency room, without a soul in sight. Hardly any lights were on, save a large, bright lit-up sign that said EMERGENCY. A nurse emerged. About 30 seconds later, my entire face swelled up in minutes to a point where I couldn’t see. This was about one hour after initial ingestion, one Epi-pen, and after small dosages of antihistamines and steroids (which likely had not yet been absorbed into my blood stream as I had taken them orally fifteen minutes prior).

 

A couple minutes later, my throat started to feel like it was closing. At that point, I gave myself the second Epi-pen. Then, CHAOS. I couldn’t see– I was in a hospital bed with doctors, nurses, and family responding to my very severe case of anaphylaxis all around– running to get the right drugs, mixing them quickly at the pharmacy because they weren’t directly on hand, quickly finding a vein for an IV. The team had also called an anesthesiologist in case they needed to intubate [put a tube down my throat to help me breathe in case mine swelled up to the point where I couldn’t on my own].

 

I made it through the critical moments. Eventually, they put me on a saline drip via I.V., which makes you have to go to the bathroom. The swelling in my face was starting to subside slightly, and I got a glimpse of myself in the mirror—I looked like a grotesque circus figure–my entire face was distorted and I still had on all of the make-up from the wedding.

 

Some more hours passed. I left the emergency room, with prescriptions for loads of drugs in case of a bi-phasic response—the hospital pharmacy we were at did not have a supply.

 

My family put me to bed as the last of the wedding ceremonies were finishing at our relatives’ house. When I woke up the next morning, I felt incredibly tired. Literally, I felt like I had been hit by a train. My arms were tired, and I wondered why, and then I realized I felt the weight of my bones. I was so weak—the peanuts and all of the drugs had worked my system to an incredible point.

 

It took me 2-3 weeks to recover physically. And after such an intense reaction, I had become MUCH more sensitive to peanuts. I became slightly allergic to a number of other foods as well, which I could eat comfortably before the reaction—avocados, bananas, carrots, and others. Slowly, almost two years later, I’m introducing some of these foods back into my diet.

 

So, that’s what happened to me. I decided to start Allergy Haven after that experience. Thankfully, I survived. I hope my story gives some insight into the anaphylactic experience. If you, your friends, or loved ones live with life-threatening food allergies, I hope this recount remains a second-hand tale.

 

Neelu

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13 Responses to “What does Anaphylaxis feel like?”

  1. Fran

    WOW, thats serious stuff!

    I just started getting allergies but im really not that sensitive. you would have though you’d be warned about the peanuts in the food!)

    I’m still undergoing tests at the min after some very close calls with Apricots.

    Just wanted to ask a question. After you’ve had a reaction, Do you ever get the feeling once you have recovered that there is someone squeezing your thyroid, and it gets worse after eating? And then you get a lot of saliva as well?

    I’ve had this feeling for over a week now (but that week I had 4 allergic reactions) Doctor says he cant see that far down my throat and tells me not to worry about it :(, What do you think?

    Reply
  2. allergyhaven

    After a reaction where i’ve been pumped full of epinephrine, steroids, and antihistamines, i feel really tired, like my body has been through a lot. It usually takes me a few days before i’m back to my normal strength.

    As for salivating, that happens to me within seconds of peanut touching my tongue. It goes away with all the medication. I haven’t had the experience that you describe with your thyroid. Please consult with your doctors! –Neelu

    Reply
  3. Irene Chu

    Hello. My kids have multiple food allergies including peanuts and I myself think I had one close call with anaphylaxis due to severe tree pollen allergies. I am grateful to have found your post. It was terrifying. Thank goodness you acted fast and the hospital was right there!

    I co-author a blog geared towards food-allergic families. Would it be okay if I included a link to your post on our blog? Your detailed account could be very helpful to food-allergic kids as well as schools, family, and friends that care for them.

    Reply
  4. Irene

    Thank you for writing about your experience with anaphylaxis. You were calm and listened to your body and you saved yourself. Your post gives valuable information to families, such as mine, who are dealing with severe food allergies.

    I co-author a blog for food-allergic families. May I link add a link to this post to one of my upcoming posts? Our blog is http://www.GetAllergywise.com if you’d like to check us out first.

    Many thanks,
    Irene Chu

    Reply
  5. Irene

    I was searching for firsthand accounts of anaphylactic reactions and found your blog. Thank you for sharing your experience. Glad you are okay and medication and a hospital so close by! My friend and I, both with kids who have multiple food allergies, publish a blog for food-allergic families. I would love to refer readers to your story if that’s okay with you.

    Reply
    • Irene

      Whoops! Sorry for posting twice! I didn’t see my first post on your comments so I thought it hadn’t gone through.

      And just reread your experience. You weren’t close to a hospital (just your hotel) and were stuck in wedding chaos. Wow, absolutely frightening.

      Reply
  6. MommytoLucius

    thank you for sharing. I will pass this account on to my husband. our 4 year old son has severe allergies (dairy, egg and by a skin test, apparently peanuts too). I do not think my husband takes it seriously enough at all. the only time our son has had full blown anaphylaxis was when we took him in for an oral challenge for milk. I do not ever ever want that to happen again (we are very careful with him), but hubby doesn’t think that cross-contamination is as big of a deal as I know it is. anyway, thanks again.

    Reply
  7. Kenny

    Thanks for tye info i have server allergies too but not peanuts i have one to tree nuts peas and other nuts and some tropical fruits i went into anaphalaktic shock too but i had it in kindergarden and if you cant suspect it i cant remember a thing so thia helped me alot just incase it happens again

    Reply
    • kimmi

      NOW. My experience was tramatic.

      All my life I’ve eaten peanut butter.

      Friday night I went out, got home and was peckish. Made myself a rice cake with peanut butter and jam. Ate it and went to bed.

      Saturday I woke up, bright and early feeling great getting my day started, with breakfast and coffee. Did things around the house and it came to lunch time, in a rush- needing to get ready for work I made my self a peanut butter sandwich- with in 10seconds of finishing it, my reaction came on. Hands itching, head itching, next minute my body was blood red, hive started to break out, My lips and eyes swelled, throat closed, chest closed, broke, my mom called the ambulance they were here in seconds, Was rushed by ambulance to the hospital, in the ambulance, they put one drip up, needing to put another up- my veins collapsed, they had to put a drip up in my neck, then that vein bust. Eventually they found a vein. Started to convols, got to the emergency room where they attended to me. Had drips and ecgs up. Spent sat night and sunday day in icu.- where they carried on giving me cortisone tablets ( high dosages) and antihestimes and nebulising me with cortisone too ( my doctors order, when he came to see me on the sunday, look at my charts, said the paramedics, did everything to save me, did everything right) Was put in the general ward late sunday afternoon where I stayed till monday late afternoon… Got an epi pen and in 2weeks they’ll start testing for food alergies

      Keeping in mind I am also a chronic asthmatic. Even when I’ve been rushed to hospital while having an asthma attack, I’ve never been that scared as I was on saturday. I honsestly thought I was going to die and so did my mom. Every time I itch, I get scared Constantly in fear with every thing I eat… Never have I needed to watch what I eat but my doctor has now told me I must be alert! Carry my epipen where ever I go and always watch what I eat!

      Its been 2days and I am exhuasted and hungry, I know the hungry part is from all the cortisone_ that I am aware of. But, I’ve never been so tired!

      Let’s hope, my doctor and I can get to the bottom of this soon!

      Reply
  8. kasia jarshaw

    I am so glad i found your story. I had a similar reaction to a depo shot a couple months ago and havent felt the same since. Mine was slightly different the first thing i felt was a warm flush and my chest tightening soon after was my throat. The huge welts came right before i started vomiting. I also needed both epi shots and i had never in my life had such a reaction and been on depo for years! I do have a question. I can honestly say i havent felt good since. My lungs hurt constantly and i have major headaches. And sleep i cant get enough of. Is this normal? Theres times it seems like i cant breathe. Just wondering if you had this happen after. And in case anyone is reading this i would never wish this on anyone. I was aware of all of my surroundings and completely helpless. It was honestly the worst feeling of doom and theres no describing it.

    Reply
  9. michelle

    hi i just read your story.i have just been given an epipen and to be honest im terrified of it.i had a bad reaction when had emergency c section twice.im waiting to be tested at hospital to find what drugs im allergic to.since having my second child i have developed more allergies such walnuts a couple of weeks ago.i always feel so tired after reaction like i cant stay awake and lose saliva rather than gain.my mouth swells and completley dries up.is this normal too.i live in uk and allergies are not as well understood as america it seems.

    Reply
  10. Tams

    Thank you for your article.
    I recently experienced my first full-blown severe anaphylaxis on Friday. Mine was due to an antibiotic I’ve taken many times before and literally went from nothing wrong to not breathing in 5 minutes or less.

    It was horrific and now I’m afraid to ingest anything at all. I think there’s a part of my thoughts fearing it wasn’t the antibiotic, but something else and I may end up encountering it again. Paranoia!!!! :)

    I’m completely wiped out and having strange sensations such as increased heart rate then it drops suddenly and what feels like low blood pressure. Also, as my antihistamine and prednisone begin to expire in my system I start to swell mildly in my hands and face and get bumps inside my lips.

    I still have a few days left of the antihistamine and steroids though, so I hope all this improves.

    I’m glad you survived your ordeal and pray it never occurs again! Best of luck.

    Reply
  11. claudette

    Thank you for the article! Mine was not full blown, but much worse than I thought, when I got the dr. office she was scared, with Benadryal and steriods, and hours of sitting in the office, I was given permission to leave. I have steriods to take to make sure detox process go smooth. But now, using the word from Tam, I am paranoid, all the what if’s. I have always known that allergies can present at any time and I take notice of little things, But I didn’t with this med, I took it 3 times and had reations all three times…maybe Iam wiser now, I should say I am wiser now. Either way thank you!

    Reply

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