On a cold icy snowy afternoon in the winter of 2010 I used my EpiPen for the first time ever, whilst in the grip of a terrifying anaphylactic attack. Little did I know when I took this beautiful photograph that in a few hours I would be in A&E.
I had been out for lunch with a friend and had what I felt to be a safe meal; smoked Salmon and scrambled eggs with brown bread and salad (I didn’t eat the brown bread!). During the meal I did experience a slight tingling in my mouth and throat. I foolishly ignored these early symptoms and carried on eating the food until I’d finished everything but the bread. It was delicious and I thoroughly enjoyed it, all washed down with a large glass of red wine.
Now I ought to explain, I knew I had a serious nut allergy so I had made a judgement that this meal would be OK. It was my local pub and I’d eaten there before on numerous occasions. I also knew that eggs and dairy could give me bad eczema but occasionally I used to eat bad things for a treat, and suffer the consequences.
I felt fine, full and satisfied after such a lovely meal. I usually avoid eggs, suspecting that I have a mild intolerance to them, but today I was being naughty. During the short five minute walk back to my house I began to feel a little short of breath. Now I always walk fast and the path is uphill all the way, usually not a problem and I barely notice the incline normally. A few puffs and the inhaler didn’t seem to be working. The attack then took hold and advanced very quickly. I realised my face, lips and throat were swelling and my nose was streaming.
I have honestly always been mildly terrified about using my EpiPen; imagining in my head, the huge needle, the pain and something going wrong. In the throes of a full on anaphylactic attack I was beginning to panic and not behaving in a rational way.
What did I do?
The first thing I did was take some anti histamines. Then I phoned my husband, who on hearing my strangled struggling voice, ordered me to take the EpiPen, get off the phone and call 999. (Not the right order I know, but I was scared, and panicking fast) I was terrified and shakeing with shock, on top of all the other unpleasant side effects of this dreadful affliction, the itching, the swelling, the feeling of impending doom, my throat was hurting, my nose was streaming, my eyes swollen and watering profusely, I could not swallow or speak properly, I felt like I was spiralling out of control. I WAS spiralling out of control and I had to act fast.
Luckily I did administer the EpiPen immediately. I am amazed to say that it didn’t hurt at all and I was able to do it easily. I would like to thank Catherine, a lady I met at a wedding last year. Her job was to visit schools and educate members of staff in how to use an EpiPen safely and effectively. She explained to me the key things you should and should not do and was horrified that I had never used mine before – despite having numerous anaphylactic attacks.
I did check the instructions just to check I was thinking of doing it correctly. The important thing to remember is that once the cap is removed the EpiPen is ready to use. Grip the pen in your fist near the base above where the needle will come out, push the EpiPen firmly and swiftly into the side of your thigh. Then you’ll hear the click of the adrenalin being charged and injected into you. Wait till it’s all been injected, carefully remove the needle and massage the area where you remove the needle. I think I was vaguely aware that it had clicked into action but I felt nothing except the punch of my hand hitting my thigh. When I removed the pen there was a tiny pin prick mark and it didn’t bleed. The needle was actually much smaller than I had imagined it would be.
Phone 999 and stay calm
Quickly I phoned 999. By now I was crying and getting very upset. I was all on my own at home in the middle of nowhere and beginning to feel very out of control and frightened. I could hardly speak when I got through to the operator and could not communicate my name and address and what was wrong. The operator was a god-send and stayed on the line keeping me calm and updating the ambulance with my condition, assuring me that she had found my location using my phone number. She also made sure that the paramedics could get into the house, asking me to put the door on the latch and try to stay calm until they arrived.
I only have praise for the paramedics. They were very professional and immediately took control of the situation, which helped me to calm down a lot. They gave me another dose of Adrenalin and I think some more anti histamines via an injection – although I’m not quite sure what went on. Before I knew what was happening I was on my way to my local hospital in the ambulance.
I stayed in the hospital for about four hours under observation where they also administered steroids to ease the symptoms. Within an hour of the first adrenalin that I administered I was in the hospital and beginning to feel the symptoms easing and my breathing finally heading back towards normal.
I was very anxious about the cause of this latest attack. Having checked with the pub where I ate, they insisted the meal contained no nuts (I thought I only had a serious allergy to all nuts – and numerous intolerances) and the menu for lunch contained no dishes with nuts in the ingredients. The nuts they do use are kept in sealed containers in the kitchen – so it is unlikely that I consumed nuts. They even produced packaging to prove that the salmon and bread did not contain nuts. So what did I react to? It seems I have developed a new allergy. My doctor thought the most likely offender was probably the eggs. If they are cooked quickly and contain any raw egg anaphylaxis can occur. However, I also discovered that the eggs were cooked in lashings of butter, a bit of milk AND cream! A very serious dairy hit for someone who had been religiously avoiding dairy. Why the thought hadn’t occured to me that scrambled eggs would very probably contain dairy I don’t know.
However the fact that on each occasion that I’ve had anaphylaxis has occurred after walking fast, getting hot and out of breath. There must be some connection here.
Check your EpiPen expiry date
Both my EpiPens had expired. I had not realised this in the heat of the moment, but the ambulance staff did notice. They said I did the right thing by using them in the emergency – but that I should really be more aware of their expiry date – and renew them accordingly. I would urge you all to check the expiry dates on your EpiPens now. Once you have your new pens, you can go to http://www.epipen.co.uk to enrol online for the expiry alert service. After registering you can edit your profile, request an EpiPen trainer and update your EpiPen expiry dates online. You can also register by post by completing and returning the tear off form attached to the instructions that come with your EpiPen.
Every anaphylaxis sufferer should also join the Anaphylaxis Campaign. www.anaphylaxis.org.uk. They provide amazing help and support and also an alert service by post to flag any products that have been recalled due to incorrect labelling and possible contamination with allergenic food types.
Wear a medical bracelet
Do you wear a medical bracelet or necklace? I have a MedicAlert necklace but had got into the habit of not wearing it. I know of two companies who supply these; MedicAlert and SOS Talisman. Contact the Medic Alert Foundation – www.medicalert.org.uk or for an SOS talisman visit: http://www.medical-bracelets.co.uk/. I now make sure I wear mine every day. All medics are trained to recognise these and they will then have instant life saving information about you if you can’t tell them yourself.
Write an Action Plan
Finally, I would urge everyone to write an Action Plan. I didn’t have one and clearly when I look back on this attack I did everything in the wrong order and panicked under the pressure. I have now written one, and a copy is now stored in my EpiPen pouch. For inspiration you can download my sample Action Plan.
Make sure all your family, friends and colleagues know where you keep your EpiPen and how to administer it in case of emergency. Include in your Action Plan emergency numbers and explain in layman’s terms exactly what needs to done and when. You can also get a free trainer pen to use to demonstrate the technique. I would recommend all allergy sufferers do this as you can then demonstrate how to use your EpiPen safely with no worry of activating your real pen by mistake. http://www.epipen.co.uk/patient/epipen-extras.html
I hope that by sharing my experience I will allay some of your fears. I am quite alarmed to think that I could be so frightened myself about using my EpiPen. I always felt like I didn’t want to make a fuss and that I might get better naturally.
I urge you all to use your EpiPen fast if you think you might be having an anaphylactic attack. You wont harm yourself if it just a mild attack, and these things come on very fast so act quickly and you will increase your chances of recovering – and it could save yours or a friends life.
I wish you all safe eating and an allergy free life. But if disaster does strike lets all be prepared.
What a scary experience to have, I do appreciate your sharing it though. I am a food allergy parent and I dread having to use the epi on my child but knowing it won’t necessarily be painful helps. We did just get her a child’s food allergy medic bracelet (by AllerBling) so she has been wearing that when she goes into, say, a class without me. I worry most of all about formerly “safe” foods becoming new allergies or mild ones turning worse since she has both mild and severe food allergies. Thank you again, we just refilled our epis for another year.
Hi Homa, well that’s exactly why I wrote this. I had been sooo scared it would hurt and I’m not really scared of needles myself, but having to do it yourself, not being an expert, you worry that that inexperience may mean it hurts you or the person having the attack. If you’re having an anaphylactic attack though, the injection is hardly going to register next to the rest of the pain going on, so just do it! Do you see an allergy specialist? They can often help with reintroducing problem mild allergy foods slowly and safely to try to teach the body not be so allergic. Under proper medical supervision this can be very successful. The problem I think is when things are cut our really well from a mild reaction food, that when you do accidentally come into contact a much more severe reaction can occur. But this might also not be the case. It’s a minefield and very complicated. Thinking of you and hope she stays safe. Never heard of AllerBling but it sounds fun. Must look that up. Thanks again for commenting. It was indeed terrifying but I just wanted people to not be scared of using the EpiPen. Heres hoping you never have to. Ruth
I, too, have 2 children allergic to peanuts/treenuts I’ve also worried about the pain as does my 9 yr old. I will be having him.read this article for ease of mind. Thank you for sharing.
Tell him I am a complete girl too when it comes to pain too. It honestly didn’t hurt. I hardly felt it and was more worried that I couldn’t speak, couldn’t breath, etc. etc. Glad it helped as I was so annoyed with myself for being so scared to use it in the past.
Blimey, that is scary Ruth. So glad you are OK.
Hi Ruth,
Time to take a quick look at this article on Medscape. It’s prob the best accessible intro to Exercise induced – and Food Mediated Exercise induced Anaphylaxis out there just now. There may just be a link there somewhere..
http://emedicine.medscape.com/article/886641-overview
Cheers
Mike
I loved the article. Though one point I would like to point out is that you should never stick it in the side of your thighs. It needs to be placed in the muscle which you can find ion the top of your leg. I’ve been using mine for a long time now and Ithats the most effective
Hi Caseigh, that’s interesting, I’ve always been shown how to measure where and it’s usually not the top of the leg but further down. Anaphylaxis and auto-injector instructions all agree, not quite middle of thigh but slightly higher. Hard to explain! No wonder people find it confusing. I am concerned that needle length may not be long enough for some people so worth considering an ultrasound maybe to guauge depth of fat/muscle the needle has to get through. I’m hoping to get this done soon.
As I was reading your post and you mentioned walking. I immediately thought of the type of anaphylaxis I was “diagnosed” with years ago by my allergist…”exercise-induced-anaphylaxis”. I have multiple food and environmental allergies. My allergist said that if I am exposed to my allergen(s) and exercise (increasing my body temperature), it sets up the perfect storm for anaphylaxis to manifest in me. I do excercise regularily (jog, walk, hoop) and try to be so careful. Every time I have had to use my epi-pen, I have exercised. I have to be very careful with what I eat on a day that I will be exercising, or what allergens/pollens may be in the air if I am going to exercise outside. If I eat out at a restaurant that is questionable about possible cross-contamination, I don’t plan on strenuous exercise. Check out online references like the one mentioned by Mike. Good luck to you!
Thanks Linda, yes mine is always after exercise and worse reactions when my asthma has perhaps not been so well under control. I too try to be very careful what I eat before exercise. Generally it works best for me first thing before I’ve eaten anything, then I feel much safer. Hoping not to use mine for a good long while.
Thank you for sharing your experience. I just recently had a severe reaction to a bee sting. I went to the doctor to get this treated and was prescribed EpiPen. We did not discuss how and when to use it. I didn’t know about the expiration date either. I now know what it’s like and where to find information. I plan to go see a nurse and get some education about how to use it. I have so many questions! What if you or your loved one are wearing pants when this happens in public? Do you risk the indecent exposure citation?, or do you take the shot through your pants? Is it sensitive to the elements? We will need to carry it with us at times that it can be 100F. When we travel it can be -30F… I’m sure there is so much more I don’t even know. I will make an appointment to see a nurse immediately.
Again, Thank you! I was planning to look up the information on the internet but now see I need to talk to a professional so I am prepared and can hopefully avoid the panic part of your story.
Hi cindy, you don’t need to remove clothing, just inject through the clothing. I’m not sure how it cooed at extremes of temperatures. Now I want to find out. Good luck at the docs. They are so easy to use so don’t panic. EpiPen also have a how to video on their website which I’m sure will help. They may also have an FAQ section. Do you have a charity for anaphylaxis you can speak to? I’m on holiday at the moment but will try to remember to look into this when I get back.
I got a bee sting that made my asthma pretty bad. My nose started running. I didn’t itch except on the top of my head and I didn’t recognize these symptoms. (I’ve had anaphylaxis before but it was years ago) I used my inhaler and went to my regular doctor the next day. By then my arm was so swollen and some of the skin turned black. (That’s going to scar) Doc said he had never seen a skin reaction so bad and if I didn’t come see him when I did I would be in the hospital by the end of the day probably with blood poisoning. I know allergies very well and still did not think much of it this experience until my arm got bad. I know that next time I am stung it will be worse so I asked for an EpiPen.
Today, I accidentally ate a milk popsicle and I am allergic to dairy. I had a BIG allergic reaction and told my sister about it. I have hives everywhere, my lips are swelling, and my throat is itching. I have already taken two tsp. of benedrl. I am really scared, and am hesitant to take the Epi Pen. I don’t want to go to the hospital or make a big deal out of this. But I also don’t want to die. I never had an allergic reaction like this and I am really frightened. What should I do??
Hi Stephanie, I only just spotted your reply so I hope you are OK. I hope you also decided to take the plunge and use your EpiPen. I promise you it does not hurt. Are you OK now? It is worth remembering also that it is very rare to have a really bad anaphylactic attack and fall unconscious or worse. Most people do recover and most people who administer adrenaline also recover. It is important to act fast and also to start to recognise those very early warning signs that you have eating something bad so that you don’t eat too much of your allergy trigger. I really hope you are feeling OK now. Stay calm, sit still, and often antihistamines can be enough but if in doubt, if your breathing is bad and you are struggling to breathe, use it. If your throat is swelling and affecting your air ways, use it. If your symptoms keep worsening, use it. Am really hoping you are alright. Not a great Monday night.
I don’t understand how an injection of epi can be described as not
being painful I’ve unfortunately have had multiple times throughout my 46years that I needed to have an epi injection. Most of the injections were done by a medical professional by syringes a couple by myself with the pen. The epi injection burns like hell and the only times I didn’t feel the true pain of the needle slammed into my muscle followed by the intense burn felt with the medication being administered is when I was close to death and barely conscious. Don’t lie to little kids they deserve to know the truth of what is going to happen during this type of scary incidents.
Hi Erin, this was my honest account. I don’t experience pain like you suggest. So maybe we both just have very different experiences.
Wow Erin, your experiences must have been pretty scary and I’m sorry to hear painful treatment on top of the reaction.
Ruth, I have to say my daughter who was panicing before having the epipen and I are so grateful for you sharing your experience. It took all the fear out of the experience – nothing like a real time Google to (she had initially responded to antihistamine; but had previously had dramatic bounce back reaction). It was helpful to know how tiny the hole from the needle is too. Thank you so very much.
I’m so glad I could help. It is very scary, especially the first time, but so is anaphylaxis. The injector is nothing really compared to what you’re going through and it can save your life. Thanks for commenting and I hope you and your daughter never have to use one.