I am writing this because I was recently diagnosed with Cold Urticaria, CU for short Or in my case Primary Idiopathic Cold Induced Urticaria. It a life changing condition and I wanted to share my experiences with it in the hopes that they will help other that suffer from it be they newly diagnosed or old hands at it.
As one can imagine having a condition in which your body reacts to the cold as if you were allergic to it is challenging for someone living in rural Canada. I'm glad to be able to tell you it is do-able, with the proper precautions. And a willingness to not worry that you look like you are dressed for -40C when it is +1C. But first some background.
I discovered my CU the "Hard way" had a life threatening reaction and ended up in the hospital for week while doctors tried to figure out what had happened. Their first thoughts were that I had heart problems and considering that I had passed out for no known cause, that my blood pressure had been 80/40 when the EMT's had arrived and that I was apparently in A. Fib. Not a bad place from them to start. However as I stayed in the hospital I became asymptomatic. My heart was fine according to the telemetry. So more tests were ordered to be sure, Stress and echo cardiogram. Both came back clear.
I have to admit I was less then happy when they said, "Well it's not your heart. Probably some kind of allergic reaction". As this put me back to square one of not knowing what had happened. Luckily the allergist I was referred to was quite good and went straight to CU. Which was later confirmed by the "ice cube test". That lead to a large series of blood tests because CU can be "Secondary" meaning that it is caused by another underlying condition (many of which are quite nasty). The blood work all came back clear, which left me with a diagnosis of Primary Idiopathic cold induced Urticaria.
Let me break that down a bit:
So, Why did I drop my blood pressure and end up in A. Fib. you ask? Well the reaction goes like this. I had been out to dinner with family that was visiting. We had sat out on the patio of the restaurant even tho it was a cool and damp day. This had the effect of dropping my body temperature over my entire body (something that is VERY bad for people with CU). Upon getting up and moving my body started to react (re-warming intensifies the reaction). So by the end of the short walk from the restaurant to home my entire body was as red as a lobster. My body had decided to have a systemic histamine reaction and that ment that all my blood was rushing out to my skin and away from things like my heart and brain. The lack of blood flow to the brain resulted in the passing out. The lack of blood flow to the heart resulted in the A. Fib. All in all I was probably pretty lucky that it wasn't any worse then it was because the A. Fib is the start of a very nasty downward spiral that looks like:
heart doesn't get enough blood so doesn't beat properly
heart beating improperly causes a decrease in blood flow
go back to top with it getting worse each time through.
So, that was the scary part. But Now I had a Dx, and thus knew the cause. Also had a new Prescription for daily Reactine, and a little later on an EpiPen (Alerject) and an Inhaler (Salbutimol). The Epipen and medic alter bracelet were deemed good ideas considering that I had already had one life threatening reaction. The inhaler was because we were now into late fall and with the dropping temperatures I was finding that my lungs were far less then happy.
With the new information and such in hand I started going for daily walks to see how my body would do as the temperature dropped. As I mentioned above the first hurdle was breathing as I couldn't put gloves on my lungs. As the temperature continued to drop I found that I was o.k. as long as I was well covered up. Bear in mind for me this means gloves, hat, multiple layers, etc well before the temperature gets to the freezing point. As the Temps got cooler I had to ensure that I had a scarf around my face to trap a pocket of warm air to pre-warm the air I was breathing even with the Salbutimol. Once I got the hang of the new dress requirements I was able to go out even in temps in the minus teens.
The above does not mean that life is even close to back to normal. I am now constantly aware of how warm or chilled I am. I have to wear clothing much heavier then the normal person. I haven't and probably wont do long stints outside in the cold. All the bundling up in the world wont keep you from dropping you body temperature if you are hanging out in -15C for 3 hours. I can't go swimming any more as immersion in water is the number one way that people with this condition die (their body temp drops, they have a systemic reaction, they pass out and drown). But I am not house bound either. I can still do my weekly walk to the local Tim Hortons. I can go out to the store to get this or that.
For those unfamiliar with the condition summer will not be the total reprieve that it may seem. I had actually had two incidents of breaking out in hives during the summer that we had been trying to figure out ourselves. Any rapid cooling can cause the reaction so wet or windy days are troublesome and places with too much A/C will be also. I already know that I'll always have to carry a pack with extra cloth that I can put on or take off as needed to keep myself at a good temp. Outdoor patios will probably be a no go in the evenings. So not a life without challenges but not a thermal phobic shut-in either.
Long story short it is possible to live, even in cold places, with CU. Proper precautions need to be taken. You'll need to expand your wardrobe budget as several pairs of good long johns are a must, as are multiple sets of hats, gloves (light, medium, heavy). Multiple scarves even for a single outing as they get wet from the breath condensing and thus have to be rotated (it's hard breathing through a wet scarf). And humility, you have to give up any idea of looking good or cool and accept that you are going to look like Kenny from South Park for a good part of the year.
If you or someone you know suffers from CU I'd love to hear from you. You can find how to reach me on the Contact page.
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