What motivated me to quit a good-paying job during a tanking economy without a salary? Because after 27 months of searching for a diagnosis, I discovered that encephalitis was the culprit for destroying my short-term memory overnight. It explained why problem solving and concentrating became so difficult.
Encephalitis is a brain injury with long-term residuals quite similar to stroke. Yet this “rare” illness is not always thought of as a diagnosis in its critical stage, so I am inspired to take action by sharing my journey, advocating for other patients and raising awareness.
10 thoughts on “Brain Wreck, a memoir”
I met Becky a year ago at an Encephalitis Global F*A*C*E*S meeting; since then we have become great friends and I’ve followed her progress on writing this book. Now I will be able to read it! Hats off to you Becky!
Best book I’ve read in years!!! The author’s vulnerability grabs your heart and mind from beginning to end. I laughed, I cried and I cheered Becky’s quest for a diagnosis that fit all of her symptoms. This book is written with wit, will, and wisdom that will impact many others. A must read for everyone. Congratulations!
Congratulations Becky! You are an inspiration and I cannot wait to dive into Brain Wreck! You did it! Way to Go! Yippee!
Thank you, Becky, for your website and telling your story.
I now believe I have been suffering encephalitis after collapsing late 2010. My GP eventually diagnosed shingles as one issue at the time. Specialists pointed to stress as the major source of my problems, just as your doctors also seemed to do.
I developed unbearable trigeminal neuropathic pain and sought help from pain specialists and 3 neurologists who only prescribed brain-numbing anticholinergic medication which negatively affected memory while also relieving the pain.
But I was sleeping almost 16 hrs a day, was cognitively dysfunctional and emotionally labile, and simply not myself at all. All these symptoms should have been alarm bells as abnormal and not in keeping with the expected medication side effects yet all my symptoms were dismissed as medication side effects and the emotional fall-out of living with chronic pain.
My husband and son were imploding without me able to function normally as I had always been highly organised and kept our finances and our lives on track. But life was a day-to-day marathon and I accomplished very little. I didn’t want to live except for my son. My husband drank himself silly and convinced himself and my family that I was malingering. This distressed my son ever more as he alone knew I wouldn’t let him down if I could help it.
Despite my limited but not insignificant formal medical knowledge, I scoured medical journals, albeit slowly, looking for some means of help. After 2 years, I begged my GP to let me try antiviral medication, despite being very expensive and not Govt subsidised since I didn’t qualify as having the right diagnosis (genital herpes!), but I didn’t care. It seemed logical since shingles (aka herpes zosters) is a virus and was present at the time of my initial collapse, plus I had begun also experiencing extreme bouts of cold sores. I thought the antivirals might help a little. Thankfully, my GP agreed. Incredibly, the medication helped immediately and profoundly. I was able to stop taking the pain medications completely.
I’m still suffering cognitive and energy issues, but I feel like I’m now in recovery mode rather than floundering in an abyss of pain, somnolence and confusion.
Having read more about encephalitis and the sudden illness followed by cognitive dysfunction and emotional lability and personality change, I now believe this is what I have been living with. I had no idea that encephalitis was most commonly treated with antiviral medication.
I’m keen to hear if you think I may be right…
Thanks for your post! You are an inspiration for patient advocacy!! We all have to take a role in researching and reporting what is “wrong” with our bodies … whether physical, psychological, etc. You did a tremendous job of taking charge in your own healthcare, which some are not prepared or equipped with doing. I hope others learn from your story here. You’re awesome!!
I can relate with the pain, extreme fatigue, dismissiveness, etc. And while I feel qualified as a “professional patient,” I’m certainly not qualified as a doctor. However, given your experience, I’d certainly find credence in your herpes zosters as a logical conclusion. Press your medical practitioners for further testing.
The thing about encephalitis is that only 40% of cases have a known cause/source. Its emergence as an epidemic in some recent forms has doctors across the globe who are willing to take herculean efforts to change its lack of recognition. I hope to report more on that in a few months as I participate in upcoming forums.
Keep up your advocacy efforts. I really admire that! Welcome your comments anytime.
My husband had HSE 3 years ago. Main problem now burning eyes. Has anyone else had this? If so how did you deal with it?
Mary – I’ve had lots of vision issues as a result of encephalitis. First two years was loss of peripheral vision. Now blurry vision as the day progresses – even 5 years later. I’ve just accepted it over time as it appears there’s no resolution … just progression in how the brain heals itself over time. I see my optometrist frequently. I avoid reading toward the latter part of the day. Stripes and blinds drive me crazy, so I avoid those. I don’t drive when I’m tired.
If you haven’t found it already, I highly recommend joining the Encephalitis Global group on Inspire.com so you can connect with a broad group of survivors who have had similar residuals. You can join as you or anonymously. I’ve found it quite healing to connect with others who have similar resulting symptoms. Optimistically speaking, I continue to improve over time and am hopeful your husband will experience the same. Thanks for connecting. Best to both of you.
I get the foggy eyes or blurred vision as the day goes on … after 5 years now. I’ve not found a solution, but I highly recommend joining Inspire.com’s group for Encephalitis Global and post your question there to see if other survivors have suggestions. There are usually lots of folks eager to share what’s worked. Personally, I just deal with it. Doctors recommend lots of rest and even power naps, if possible. Glad to see your husband is in good, obviously caring, hands. Hats off to you for being a great support system.
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