My life changed on November 20th, 2016. After helping my husband with a night shift job that required us to be out in -17 Celsius all night, I woke up from a few hours of sleep covered in hives, swollen shut eyes and a hoarse throat.
At first I thought I was allergic to my husky and her new pups because we had brought her the house 2 days prior to have them. I took some Benadryl but has the day went on it just got worse, so my husband took me to the hospital where the doctor gave me more Benadryl. For weeks I continued to believe that for the first time in my 38 years I was allergic to dogs, which didn’t make sense.
Four days before Christmas Eve, I had to rush myself to the hospital. That morning I had some issues with my dogs outside, and I was outside for about 40 minutes. I came inside and when I did I could feel my lips tingling and my skin felt extremely hot. I took a reactine, got my 4 kids ready for school, 5 minutes after they left my entire body turned from hives to a full red rash.
I was swollen from head to toe. I was having a difficult time breathing and felt as though I was going to pass out. I knew I had to drive myself to the hospital because we live 20 minutes out of town. How I made it there was in God’s hands, by the time I got to the hospital my throat was nearly closed off, my blood pressure dropped, and my heart rate dropped, and I passed out.
It was a few hours, a couple of epi pens, Benadryl and some pills under my tongue for my heart but I was feeling ok. I have only had one other reaction since that one but I basically don’t leave my house unless needed and then I am bundled up. My doctor diagnosed me this past Wednesday with Cold Urticaria and Cholinergic Urticaria, up on til these past 4.5 months I have never been allergic to anything.
I am so tired of medications, from my doctor and over the counter. I am now once again on 3 different meds for 28 days to see if it helps, so far the only thing it has done is give me headaches. Steroids didn’t even help, the hives are there and will never leave. It is so tiring, I am cold all the time, my doctor has run all the proper test everything comes back clear.
He’s doing the very best to help me, but living in northern Canada with not so nice temps in the winter is sucking the life out of me, not to mention the toll it’s taking on my children and husband. They are wonderful but I know it’s hard on them, I can no longer go sledding, skating, or even a simple walk because after a few minutes outside I get a chill then my lips begin to tingle and I know it’s time to go inside.
I can’t even shower without having someone bring me a towel and clothes straight from a warm dryer because if I get a chill I’m doomed, and on the other hand if I get overheated I’m doomed, I am not looking forward to summer. I love summer. I spend every second in my vegetable garden, camping, and hanging out with my kids outside. Now I’m just worried.
It’s hard to talk to family and friends. No one I know has ever experienced this. It seems as though friends and certain family members are keeping their distance, which makes me sadder. I thank God for my husband and mother for helping through this. All I can do at this point is live my life carefully, remember my epi pen when I leave the house and pray that one day this terrible condition will go away as quickly as it came.
Thanks,
Yvonne
Anonymous says
Yvonne you’re so strong to endure all this, it’s wonderful that your husband and kids are supporting you so much! Don’t give up hang in there we’re all here to support you!
Yvonne says
Thank you. It’s seems as tho all I’ve been doing the past 15 months is trying to be strong, along with this condition I am also on a wait list for 2 knee surgeries due to a complete acl and mcl tear and needing screws in both knees. I’ve actually been wondering if my torn ligaments could have something to do with it, I’m so desperate for a answer.
Anonymous says
The people on this forum know how you feel don’t forget others are going through the same thing, it’s helpful to remember your not the only one dealing with this, like you say we can only hope that it passes one day, keep fighting Yvonne
Yvonne says
Thank you. I am so thankful I found this forum, I didn’t realize how many people suffer like I do, I feel a little better knowing there are wonderful people on here I can talk to.
Beenthere says
Yvonne-I have heard from allergy specialists that a low salicylate diet is good for cold urticaria. I would suggest you try it. It might work for you.
Yvonne says
Hi. Thank you. I had a quick look at the salicylate diet, most of the “ok” foods I already eat daily, I will definitely do some more research on it.
Anonymous says
Hi Yvonne — my 17-year-old son has cold urticaria (we think he’s probably had it since he was between 10 and 12 — but (as you describe) it is so hard to figure out what’s happening! He also has many, many other allergies, so for a long time we thought it was latex or mold or something he was touching… We always keep 2 epi-pens handy (he’s gone into shock once and it took 2 injections to work), as well as liquid Benadryl (works quicker than the pills) and an inhaler. (If you haven’t already done this you might want to pay attention to how your lungs feel after being exposed to cold (asthma doesn’t always involve wheezing — it might involve coughing or just a weird tightness in the lungs).) Also pay attention to any digestive issues — some people will have nausea, vomiting, diarrhea or dizziness as a severe allergic reaction. Our doctor advised to consider using the epi-pen if 2 or more body systems were involved (for example, skin is a “system, digestive is one, lungs are one, etc.).
I’m curious — do you happen to remember if you might have been exposed to a new medication (or injection) or had a severe illness prior to developing cold urticaria? Lots of people talk about a reaction like that (even an insect bite or having mono). In my son’s case I think it might have been getting 3 allergy shots a week (the last one put him into shock and it was not long afterwards that we started noticing the rashes. However, we live in a fairly warm area (southeast Virginia) so it really took us a long time to put it all together.
Good luck. My son takes more antihistamines when the weather is cold, bundles up like a mummy outside, and even covers up while inside. Take extra care around water (the more area on your body gets exposed = the greater chance of shock). Monica
Yvonne says
I feel for your son and you, I couldn’t imagine how hard this must be for you, watching your child go through this, I pray everyday my children don’t get this terrible condition. When I think back to before I got sick with Urticaria, a month before I had Influenza for 3 weeks, and prescribed antibiotics, don’t remember exactly what antibiotic it was but I do remember feeling like I was dying, I have a lot of brain fog these days. For me I have had stomach issues for a few years, had my gall bladder removed 2 years ago and still have digestive issues with nausea and diarrhea, the stomach issues and bad gall bladder is hereditary, I have always wondered if this has something to do with my torn acl and mcl ligaments in my leg, it happened January 4th, 2016, 2weeks after it happened my leg went ice cold with no feeling, my hubby rushed me to the hospital and the doctor on call gave me a shot of cortisone in my knee, after that I was back to the couch until I could fully walk again which wasn’t until spring, I am on a waiting list for knee surgery. Right now I am taking prescribed Ranitidine 150mg twice daily, Montelukast 10mg once daily and Apo-Hydroxyzine 25 mg once before bed. I’ve been on these meds for 2 weeks now and still covered daily in hives, headaches come and go now, I was so excited for today’s weather it was +12 c, I thought I could finally get outside for a walk, I bundled up in my winter jacket, hat and gloves, had my walk which was only a 10 minute walk to the end of our driveway and back but my throat tightened and the hives got bigger, once again I am afraid to leave the house. This saddens me because for us living in Alberta, I should be wearing a t’shirt in this weather not winter clothes. I have another doctor appointment on the 30th, my doctor booked it to check on how I’m doing with my new meds and to go over any changes, etc. I am lucky that I have an excellent doctor, he has another patient who has been suffering for 18mths with no cause yet either, he has been doing a lot of research on urticaria and is trying what he can to help us.
Bob says
Hi Yvonne,
I am so sorry to hear of the terrible time you are having with hives.
I suggest you go back a few pages in this forum and read my lengthy, detailed, October 24, 2016 post on this forum. I was cured of CU by adopting a whole-food, plant-based (“vegan”) diet. Modern science is beginning to understand the mechanism as to why this works. CU is an autoimmune disorder. Eating a diet high in fiber serves to regulate the immune system, preventing it from overreacting. This solution is easy, it is inexpensive, and it works.
In reading your follow-up post, I see that your urticaria seemed to erupt not too long after your extensive course of antibiotics. What may have happened is that your gut microbiome got extensively disrupted by the antibiotics. You may have a tough time ahead of you as you will have to “rebuild” a healthy gut microbiome. You may want to take probiotics along with gradually increasing the amount of fiber in your diet.
Yvonne says
Hi.
I went back and read your October post, I am so happy you have found something that worked for you, I will check more into the whole food vegan type diet, but I also have to keep a certain diet because I am hypoglycemic, I was diagnosed at 19 with my first pregnancy and with each pregnancy it got worst by my 4th pregnancy my then doctor told me I was border line diabetic, handed down generations on my mothers side, so I have to follow a diet for this which includes eating eggs every morning, I also grow my own vegetables in the summer and freeze and can them for winter, the only vegetables I have to buy in winter are lettuce and cucumbers:) we also raise our own meat, we never eat out as I prefer to cook at home because I then know what my family is eating, to many past bad experiences. Between stomach issues from a previous bad gall bladder that was removed, being hypoglycaemic and having a diet for both I’m honestly not sure where to start.
I have been hive free now for 1.5 days which is a huge deal considering that I haven’t had a minute since November free of hives, I’m not sure if it’s the fact that the weather is perfect outside and I’m not getting a chill or too hot, or if my meds finally started working, my body still feels itchy all over but no hives, I’m praying every night that it goes away so I’m hoping that it does, but at the same time I’m also afraid to go off my meds. Only time will tell. Thank you so much for reading my post and replying.