Chronic Idiopathic Urticaria – the journey back to wellness

Last night was my first solid night of sleep in three months.

Three months.

Seriously, let that sink in. I’ve been tossing and turning (and itching) every single night for months. Layers and layers of antihistamines and mild sleep aids did nothing to help me fall asleep, and I never slept more than 2-3 hours in a row (and those were mostly after several days of sleeplessness in a row).

So, what’s changed?

Let me start at the beginning. In October, I started getting this itchy rash on my thighs and hands. Already on Singulair and Claritin, I added Benadryl to the mix and saw my doctor. She gave me steroids and a few blood tests for food allergies; the steroids reduced the spread of the rash, but the tests had nothing to tell me. My arms fell victim next, and the doctor gave me another round of steroids, a script for Zyrtec to replace my Claritin, and a referral to a dermatologist.

Getting an appointment with a dermatologist is a joke! The first referral offered me an appointment for the end of January, which was two months away at that time. Thankfully, the second referral got a more serious response and an appointment that same day. I rush to the dermatologist’s office for help.

There was good news. I didn’t have shingles or scabies or anything contageous. I was given a steroid cream this time, to apply wherever I had the rash. She also did a biopsy, giving me my very first stitch after taking a little piece of my arm. The results came back as hives (in fancy science speak – urticaria) with an unknown cause.

Chronic hives (urticaria lasting more than 6 weeks) are stressful. Aside from the lack of sleep, I was an anxious basketcase when faced with an unexplained attack from my own body. I had minor hysteria when I watched new patches forming on previously unaffected skin. Needless to say, depression is greatly affected when you feel like a leper tied to an anthill; I didn’t want to do anything, period.

My medicinal regime turned into: Zantac, Benadryl, and Clobetasol Propionate (cream) in the morning; Benadryl throughout the day, almost ever 4 hours, to stave off some of the itch; Zantac, Benadryl, Zyrtec, Singulair, and Clobetasol Propionate (cream) at night. In addition, I used an eczema-friendly lotion after the cream each morning and night; the cream itself smells like burnt rubber and stings, but it kept things from getting worse.

My next appointment was scheduled for a month from the biopsy visit, to allow the medicines time to work before trying anything else. They didn’t work, at least not really. I wasn’t sleeping, even as I tried removing caffiene from my life and adding chamomile tea (and recently melatonin as well).

I did lots of research. My brain is in a constant chemical fog, but factual actions (research vs creative writing) still work just fine. I found lots of people who were put on the same stuff, with the same (lack of) results. There was Doxepin mentioned, an antidepressant that also helps skin… but carries a side effect of major weight gain; I’m already overweight by a long shot, so I’d rather not add another 10-20 pounds.

I knew there had to be something I could try. Oatmeal and epsom salt baths hadn’t helped beyond the soaking time; as soon as I was dry, I was itchy again. Refusing to give up, I found four more things to try (that weren’t another steroid or noxious cream):

Vitamin D – Apparently many people are low on vitamin D, especially if they don’t go outside much. In scientific studies, high-dose vitamin D helped some people with chronic hives.

Vitamin C – Another vitamin suggestion, vitamin C is supposed to help balance the skin or something. I enjoy vitamin C (sour! yay!), and it’s also good for your immune system in general.

Vitamin E (Oil/Lotion) – Some people have an allergy to vitamin E, but I’ve used it before when I had a pizza-face full of acne (middle school… *shudder*). It has healing and soothing properties, so it’s suggested to slather on the oil and/or take the pills.

Probiotics/Prebiotics – Many health problems can be traced back to the gut and failed/incomplete digestion. Prebiotics will feed the good stuff in your gut, while probiotics help beef up their numbers.

Thus, my appointment approaches next Friday, and I’m armed with questions and research.

Where does the sleep come in?

Well, I’m not the most patient person. I happened to have a bottle of vitamin E oil at home, so I took a chance this past Tuesday and slathered it all over my rash. The areas stung like a bad sunburn later that day, but I was at work and unable to do anything about it. When I got home, I reapplied the oil after realizing that it stung as if dried out… but it didn’t itch!

Oh. My. Gods!

Last night, I repeated the process (actually applying the oil twice that evening, once after dinner and again right before bed). I still took Benadryl and all that other stuff, but that usually means nothing for the itching and insomia. And yet… I closed my eyes at 10pm, and I found myself waking up to my alarm the next time I opened them!

I still have to medicate with Benadryl pretty much on-the-dot every 4-5 hours if I want to be itch-free, but now the Benadryl is actually capable of covering the level of itch left after the vitamin E oil has its go. Vitamin E lotion isn’t acting as effectively today, so I’m itchier but still way more relieved than previous weeks of hellishness.

I’m going to grab a bunch more vitamin E oil from the store tomorrow, because the bottle I have is small and won’t make it beyond the weekend. But for the first time in three months, I don’t feel hopeless and helpless. I plan to ask the dermatologist about the high-dose vitamin D option as well, because I’d like her opinion (and to verify that there’s no interaction with the handful of pills I take each night).

Hope also stems from the cascade effect of finding some relief. The vitamin E oil hasn’t instantly cured me, but I can sleep now. Sleeping means I’ll be a little less stressed (physically) each day. Less stress on my body leads to less stress on my mind and less of a trigger for my depression. Less stress and depression leads to less of a trigger for the hives. Less hives means more sleep, and so on.

Beautiful, no?

I’d like it if I could be urticaria-free by my birthday next month. It’d be a wonderful birthday gift from the Universe. Just sayin’…


One thought on “Chronic Idiopathic Urticaria – the journey back to wellness

  1. Pingback: Chronic Idiopathic Urticaria – updates on living with hives | Larissa Lee's Scribbles

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