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Consequences of anaphylaxis: memory and processing issues

I remember going from breathing completely normally to having my throat completely swollen shut in somewhere around 10 minutes. “How much longer before I turn blue and pass out?” I wondered to myself as the nurse was drawing up the Epi in the syringe. My airway was so swollen that I couldn’t talk. And I was too exhausted from trying to get air in and out to really pay attention to what was going on around me. I was on the verge of being completely non-responsive. This was 8 months ago.

Then all of a sudden Epi kicked in. I could breathe once again. I relished those deep breaths, then opened my eyes and actually looked at the doctor next to me and smiled. She, quite obviously relieved to some extent asked me my name with which I responded correctly and the tension in the room lifted.

I was out of it apparently enough for her to be concerned about if I was still coherent by asking me if I know my own name. I was. But what I don’t think she, nor I nor anyone else who was part of the team that cared for me in the ER, ICU and hospital with 4 more rebound reactions ever expected or gave any thought to would be the after effects of nearly dying and not being able to get enough oxygen for I’m not sure how long.

For 3 weeks I was completely exhausted. So I didn’t think it strange that I was having more trouble remembering stuff. I just blamed it on being so exhausted and that my body was still recovering from it all. It’s completely normal for me to be exhausted for at least a week after anaphylaxis.

But I found myself struggling to get back on track with homework. I at first blamed it on being exhausted. But after a few more weeks when I was still forgetting things, including spelling simple words, I started to realize something just wasn’t the same as it had been before. I really noticed something was wrong though when I kept forgetting what I was talking about in the middle of a sentence. It wasn’t the same kind of thing where you’re talking about something and get sidetracked and forget what you were talking about.

I’ll be talking and AS I’m talking, I know what I’m about to say next and then it just dissolves. I find myself frustrated because it dissolves like sand. It’s really odd. I keep forgetting about key words I’m about to say that are relevant to the topic.

But also really annoying is when I’m talking about something then out of the blue it’s like my mind has just been wiped clean and I have NO clue what I was just talking about, but also NO clue I was just talking in the first place!

Equally frustrating is school. I used to be really good at writing papers. Now, it takes me 3-5 days to write an 8-10 page paper which I used to have no trouble writing and they feel really disjointed to me. I’ll write one part and then completely forget what I just wrote, so it’s a wonder I don’t accidentally write the same thing more than once! Yes, I proofread them. But even then after I just read a paragraph I’ll forget what I just read in that paragraph. One of my last papers the professor commented to me that I had been rather redundant. Oops. Reading and taking notes is also harder as it takes me longer to understand what I’m reading and I keep rereading because I completely forget what I just read.

Back at New Years I apparently set a few goals. Last night I found out in my journal I had set any goals. I was sure I hadn’t! Oops.

My best friend told me a few weeks ago that now she can make up stuff we’ve talked about because I can’t remember 1/2 of what we actually did talk about!!

The other day I met with my allergist to go over my action plan because it was really really confusing me. It turned out, what was making me so confused was that I had forgotten most of my action plan!! I had mentioned my memory issues briefly in the office and she didn’t think much of them besides that I should bring them up with my GP and that it could very well be due to a lack of oxygen during the reaction. But it wasn’t till that evening when she called to clarify something she realized that she realized I had completely forgotten the old plan that she realized what I meant by memory issues.

I also will be trying to say something and I just cannot figure out how to express it in words. Last week my mom asked me a question and I was trying to answer it. It was a simple answer. I just couldn’t find the words to reply. Finally she gave up and we just moved onto a different subject. But it drove me nuts that I couldn’t figure out how to explain something really simple. I used to not have this problem.

So, I scheduled an appointment with my GP. Who sent me to a neurologist. Who confirmed my allergists thoughts. Basically, I didn’t get enough oxygen to my brain (either there wasn’t enough oxygen in my blood or I didn’t get enough oxygen rich blood flow to my brain, aka anaphylactic shock, ie drop in blood pressure) which damaged my short term memory. It’s one of the first things in the brain that gets affected by a lack of oxygen. Combine this with the fact I have celiac and also am deficient in a few vitamins and minerals and you have me forgetting a lot more stuff than I used to.

The good news though, is I’m young. And with work to learn stuff and keep stimulating my brain along with sleep, exercise & good nutrition I should recover almost fully if not fully. So, I’ve got a tough road ahead. But I’m not giving up. I also graduated last weekend and I didn’t just graduate. I graduated with honors. It’s taken me a lot more work to keep up my grades this past year, but I did it.

But also, you know what? I think that more people deal with memory and processing issues after a severe reaction than admit it. I know one friend of mine is dealing with it too. But it seems to be that people think it’s not all that bad. Or that it’s all in their head or imagination. But it’s real. My neurologist told me that if you look on my MRI you won’t see the damage because its not big enough. But if you were to stick a microscope in my brain, you’ll find the damaged parts. They’re there. They’re real. And even though the damage isn’t really huge, it’s there and I can feel it’s effects every day.

But I’m not giving up. So, if you find yourself having memory issues after a reaction, it’s not in your imagination. Go see your doctor. It’s real.

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10 Comments

  1. hsw says:

    Thanks for submitting this to the Food Allergy Blog Carnival, I am sorry you’ve had to go through so much but reaching out and sharing your story will help others, I’m sure of it.

  2. […] anaphylactic reactions and was sure to share her findings with the internet at large in her post Consequences of anaphylaxis: memory and processing issues at her blog, Gluten Free Froggie in the Kitchen.  This is something I’ve found especially […]

  3. Jenny says:

    I had anaphaxis and code blue it was around 3 minutes to revive I have the same symptoms but muscles are so very weak. I now have leisions back of my brain both sides. Also weak but try to move around. Can’t stand,sit, or walk long also can sleep for days. Do you know if anyone has close to the same symptoms?
    Jenny

  4. Sandra Foreman says:

    3 1/2 weeks ago I had a major AS event during which the EMTs had to break down my door and intibate me on site. I was already blue and they detected a faint pulse. I’m 60 yrs old, never had an allergic reaction before, and spent 7 days and 6 nights in the hospital, 3 of those in ICU. I am recovering but still feel exhausted all the time, even though I have followed through with the recommended physical therapy. My heart rate is now almost always 90 or above, even at rest. Doing the simplest chore causes the rate to go to 110-120s. After having numerous tests I was told I have a slightly enlarged aorta. Could that be the result of that event? Will all of this clear ever clear up?

    • Sandra Foreman says:

      For the gentleman above who mentioned memory and thought processing issues, I, too, have experienced some fuzziness, temporarily not recognizing certain words or the name of items or people, not being able to complete a thought mid-sentence. My MRI did not show any abnormalities, either. Hopefully these strange aftermath issues are just residue and will clear up eventually. After extensive allergy testing we don’t know the cause of the AS. I will carry an EpiPen with me at all times and will never eat without others being around me.

  5. Carolyn Markland says:

    I am so glad I read this article and I’m not going crazy. I was given an allergy injection 10 months ago and went into grade 5 anaphylactic shock. When I got out of the hospital I couldn’t remember my granddaughters’ name. I am so afraid I’ll wake up one day and not know anyone.I can’t remember anything I have to write down everything.I made an appointment to see a neurologist in July but it’s definitely necessary

  6. James Gibbins says:

    Absolutely fascinating reading. I am 53 and have had severe nut allergy all my life. In my twenties I underwent an experimental desensitising program with disastrous outcomes in the end. And unfortunately I have had many accidental exposures. After every reaction I have always experienced a few days of feeling dazed, and a couple of times this progressed to a short but sharp bout of certain depressive symptoms. This year I have had 3 exposures (not so intense for me) and my wife swears my memory has gone to pot – I’m sure she’s thinking early onset dementia! What you guys have shared here lines up remarkably with my experiences.
    Good luck everyone avoiding your allergens!

  7. Thank you for sharing this. I too suffer from anaphylaxis.. and I know how you feel. I wish more people understood.

  8. Linda Harkins says:

    My mother had an AS episode on 6-25-17. She was in ICU for 7 days. She takes 1 Claritin & Zertec in the am & again in the pm. They tested her but found nothing she is allergic to. She carries an Epi Pen. She is 76 but was in good health. Since the episode (3 months, almost) she is extremely exhausted all the time. The dr. doesn’t seem to be worried. She is very frustrated & feels like she has no life. Is this normal?

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