My Eight Weeks With Chronic Hives
Important note: I am not a doctor! This is just my personal experience with chronic hives. Please, if you are experiencing a bad case of hives, seek medical attention immediately, as it can be life-threatening! If you have any of these symptoms: trouble breathing, throat tightness, swelling of the lips or tongue, dizziness, or vomiting, call 911 immediately.(opens in new tab)
It all began with an allergic reaction to a drug (Doxycycline)(opens in new tab) I was prescribed, ironically to treat a skin rash on my face, called Perioral Dermatitis(opens in new tab) (inflamed itchy rash on face near mouth).
I have always had sensitive skin and allergies to certain ingredients in medications and fragrances, and I have unpleasant reactions to bug bites and bee stings. Normally, for me, the first sign of an allergic reaction to a medication or ingredient in a product is a cluster of small, red, itchy hives, usually on my chest, back, or midsection. For bees and sandflies, it is worse. Insane, rapid swelling to the point where, once, when I was in remote Chile for work, I had to use a horse tool to cut off my wedding ring to save my finger!
Getting my room removed by a horse tool in Chile after a yellow jacket sting
Seasonal allergies are something I deal with every single spring, making it miserable to do the one thing I love after a long, cold Minnesota winter: be outside! But I do it anyway, and I leave the windows open for fresh spring air and breathe in the lovely fragrant tree pollen from blossoming crab apple trees and lilacs despite the negative consequences. Usually by late summer, the headaches, runny nose, itchy eyes, and throat are gone. I can finally stop taking daily allergy pills, nose and eye sprays, and be done with it.
How hives can upend your life
But the hives are another thing. They can attack at any time, due to an allergic reaction to food, medicine, ingredients in products, and sometimes even stress.
Normally, they go away in a day after taking Benadryl and stopping the offending medication or product (if I am aware of what it is that is causing the allergic reaction). This time, however, it was different. What started as a drug allergy while filming on location for my job in Northern Europe turned into a full-blast 8-week mess of itchy, prickly masses of quarter-size hives and welts, flaring up after walking outside in the heat, humidity, sleeping, or even taking a shower!
It was like a ridiculous, agitating mess that took five doctor visits, lots of trial and error on medications to stop the hives, hyperactivity from too much medicine making it hard to focus, and worse, insomnia for hours on end with no relief.
Finally, after eight long, miserably itchy weeks, the illness had run its course through my body. I am hopefully hive-free but am aware that it could come back, and if it does, this time I will be prepared. During these eight long weeks and five different doctor appointments, I did a fair amount of my own research to try to figure out what was happening, how to treat it, and why.
With chronic hives, also known as urticaria, the immune system goes into overdrive, and at times I felt like my own body was attacking itself. For me, heat, humidity, stress, and fatigue made it the perfect storm for chronic hives.
What Is Chronic Hives (Chronic Urticaria)
Per the American Academy of Dermatology, Chronic urticaria(opens in new tab) are hives that persist or recur for more than 6 weeks. If no specific cause can be identified, it may be called chronic spontaneous urticaria (CSU). For me, while it cannot be fully proven without being tested by an allergist, my hives started after an allergic reaction to Doxycycline (opens in new tab) a low-level antibiotic prescribed by my dermatologist, ironically to treat a skin rash on my face, called Perioral Dermatitis(opens in new tab) (inflamed itchy rash on face near mouth).
I have had allergic reactions to medications before, so I knew the signs: 24-hours after taking the medication, I normally break out in tiny itchy red hives. But at the time I realized that I was having a reaction, I was traveling in Lithuania and Germany for work. The itching from the hives was less than the horrible itching from the face rash. So I took my chances and would visit the dermatologist once I was back home in early July.
Being on location filming in Lithuania and East Germany in June had many perks like these gorgeous horses. Yet long, demanding hours of work.
How the Hives started
First started as red polka dots of itchy little hives on my chest, stomach, back, and under my armpits and bra area. This continued for two weeks while I was traveling with work. Once I got home to the US, I quit the medication and went to the dermatologist (visit #1) and was prescribed prednisone (a steroid that can make you hyper) and took two Benadryl a day. Meanwhile, life was hectic, stressful, and we were experiencing unusually hot, humid weather for weeks (reaching 100 F/40C ). The hives persisted, and I was back at the dermatologist again looking for answers (doctor visit #2)
The Perfect Storm: Heat, Humidity, Stress and Fatigue
“It was the perfect storm,” the dermatologist informed me. “Heat, humidity, fatigue, and stress” all push up your adrenaline, combined with the prednisone. It was making me crazy! Already a high-energy human, at the age of 54 I felt like I could run a marathon and was on fire. I was super productive with work, accomplishing tasks faster than ever, yet my sleep was a nightmare. I felt so hyper at times it hurt, and at night I’d wake up at 3 am with hours of insomnia. It was terrible! I was so exhausted that I’d hit my rut around 1 pm after lunch and have to sleep for an hour or so to make it through the day. Then, if I got stressed out, went on a walk or took a shower, my body would reinforce this vicious cycle and my hives would flare up.
Trying to Treat the Hives
By week five, I felt I could hardly stand it anymore. I had a headache, my skin felt like sandpaper, and I was exhausted. So on a Sunday afternoon, I went straight to urgent care for doctor visit number 4. (I had snuck in another dermatologist visit, but they told me to suck it up). The hives continued to get worse and more frequent. At this stage, I moved to flare-ups of quarter-sized groups of hives which would come after showering, walking outside in the heat and humidity, and stress. Near the end of my bout with chronic hives, the outbreaks were giant, patchy, itchy welts. I felt my skin prickle all the way up to my hairline. And I’d have a huge headache and so much fatigue that I would have to listen to my meditation on Insight Timer and then nap every day after lunch. Chronic Hives were taking its toll on my life! I couldn’t do anything without itching. I walked around the house unshowered and wearing ice packs to relieve the itching. Sometimes it would feel an itch, and there were no hives visible. I was a train wreck!
The urgent care doctor explained a little bit more about what was happening to my body. My immune system was in overdrive, and I had to calm it down. He recommended taking the antihistamine Zyrtec -24-hour strength twice a day (morning and night) and combining it with 2 doses of 20 mg (morning and night) of Pepcid (famotidine). I was surprised to learn that Pepcid, which is primarily an acid-reducing medication, is also an H2 antihistamine. Because histamine contributes to allergic reactions, famotidine is sometimes used alongside an H1 antihistamine (such as cetirizine, loratadine, or diphenhydramine) for certain allergic symptoms, particularly hives/urticaria.
I was also prescribed another round of prednisone (look out world) along with hydroxyzine ( a prescription antihistamine that can be used to treat itching associated with hives (urticaria). It can cause drowsiness. I was super hyper from the prednisone, and I felt like I was flying and soaring and 20 years old again. It was problematic as it started insomnia where I’d wake up in the middle of the night and toss and turn, restless for hours. I was so exhausted I felt dizzy and had rings around my eyes, which prolonged the hives since fatigue, stress, heat, and humidity are known to be stressors that keep the flare-ups going.
The Role of Stress and Lack of Sleep
At the same time, stress played another role. My body is telling me something. Too slow down. Skin is the largest organ we have. My immune system was attacking my body at this point. I needed to calm down and relieve stress, yet the things I normally do to de-stress (like exercise, take a walk, or a shower or bath) made the hives worse.
Furthermore, having two stressful, sad events happen at the same time did not help. I lost someone I knew who was my age, and another friend’s brother received some very difficult news.
This put it all into perspective. Life is short. What matters most is these four things: Health, Happiness, Love (family), and Community (friends). Everything else – the crazy state of our damn world, our horrible politics, the sadness and tragedy of climate change -keeps me up at night and terrifies me, yet for the most part it is out of my control.
Finally, Eight Weeks Later
Finally, August 15, almost 8 weeks later, my bout with chronic hives had come to an end. I had been to the dermatologist four times (seeing a different Nurse Practitioner who recommended a different way to treat it), then urgent care, and a last follow-up with my general practitioner. He saved my sanity that “Yes, he has seen this happen before (I wasn’t crazy)” and while stress and the other factors may have had a role in my illness, it is often hard to nail down. I could go to an allergist for yet another series of testing but at that point I simply am worn down. I will save that for another time if I get this horrible condition again (which I surely hope not!).
What I Learned
I wrote this piece because I was looking for answers on why I was getting hives, what to do and how to treat them. I was extremely frustrated and wanted to learn as much as possible about this illness that I had never heard of before. In my searching online, I found some helpful things and many other unhelpful tidbits. My hope is this post is somewhere in between and points others in this situation in the right direction.
For me, I did the following to relieve and get rid of chronic hives:
- Stopped the offending medication that caused the initial allergic reaction (thankfully it was pretty obvious what started my hives and sometimes it is not).
- Visited my dermatologist ASAP
- Began a series of medications such as prednisone, Zyrtec and Pepcid combination for a powerful antihistimine, and added in hydroxicine to help even more. It was a lot of meds!
- Took naps
- Avoided showering or bathing and only did cold sponge baths
- Avoided being outside when it was hot
- Avoided sweating
- Tried to reduce and manage stress for things within my control
- Visited the doctor who understood everuthing happening to my entire body besides my skin.
Check out the American Academy of Dermatology Association’s list of 10 ways to get relief from chronic hives(opens in new tab). The first thing they recommend is to make an appointment with a board-certified dermatologist. For me, my hives started because of going to the dermatologist for a skin rash and turned into chronic hives after I quit the aggravating medication and the “perfect storm” of high heat (we had weather up to 100 F/40C for days on end), high humidity, stress (way too much going on to handle), and fatigue.
A Wake-Up Call to Slow Down
This bout with 8 weeks of chronic hives is a wake-up call to slow down. To remember to stop and breathe. To be present and to mindful. In today’s crazy world, it is hard to remember these rules of mindfulness and being present. Yet it is essential to embrace the fleeting speed of life.
Important Medical Note
I am not a doctor, and if you are experiencing hives, please seek medical attention immediately, as some hives and allergic reactions can be life-threatening. What to look for:
- Trouble breathing: Wheezing, shortness of breath, or chest tightness.
- Swelling (Angioedema): Puffy eyes, or swelling in the lips, tongue, mouth, or throat.
- Low blood pressure: Feeling very weak, dizzy, lightheaded, or fainting.
- Stomach distress: Sudden severe belly cramps, vomiting, or diarrhea.
- Sense of doom: An intense, sudden feeling of panic or impending danger.
