My journey with HE started on September 11th, 2009, when I was carted out of work on a gurney. Within 30 minutes, I had lost my vision, ability to speak, had numbness on the whole right side of my body and was basically freaking out.
I was only 26 years old. I had no idea what was happening to me, but the scariest thing was that no one else could figure out what was wrong either.
I had to take disability from work, and I spent days curled up on the floor, unable to walk or properly articulate and only having vision from one eye. After a couple weeks of failed migraine medications, my doctor (neurologist) tried a prednisone pack. I got my vision back! Finally progress!
He did some research, checked my anti-thyroid antibodies and diagnosed me with Hashimoto’s Encephalopathy. I followed the typical treatment plan… high dose IV methylprednisolone in the hospital, 1g a day for 5 days. I had significantly improved. But I was still suffering from a host of symptoms, in addition to the new side effects from continuing high dose oral prednisone.
I tried IVIG, Plasmapheresis and so many other drugs and treatments to no acceptable satisfaction of life. At one point, I was on somewhere around 21 different medications. So over the past 3 years, I’ve probably gone through at least 60 different medications to help with my host of symptoms.
I began researching almost non-stop. I started this website to collect my thoughts, knowing my memory had become so bad, and also hoping my efforts may help other people suffering like I was.
I decided high dose steroids were not the final answer. Steroids are a double edged sword. Yes, they suppressed my immune system, but my heart rate was out of control, my skin, eyes and adrenal gland was suffering. And at one point, I DIDN’T SLEEP AT ALL FOR 3 MONTHS! Literally… not a wink.
I tapered down fairly quickly. I went into withdrawal, so I was feeling a different kind of sick all the time, but I finally made it down to no prednisone… And then I went into adrenal crisis. Yup, the high dose steroids over the years had basically killed my adrenal gland, so I wasn’t producing cortisol to live. So one of my permanent (hopefully not) side effects is that I now have to take a small amount of steroids every day since my body no longer produces it. I take hydrocortisone rather than prednisone, as I feel it is easier on my system.
For the seizures and steroid induced anxiety, I take clonazepam. When I first started it, I remember saying, “It just makes me feel normal.” I’ve been up (way up) on the dose and down. But nothing else works for my seizures. I tried 6 different antiepileptic medications (oxcarbazepine, valproic acid, depakote, and some others I can’t remember). All had horrific side effects. I felt locked inside myself, unable to access most of my brain, unable to communicate effectively, and I lost the desire to live. My husband left me at this time. He couldn’t deal with me being so sick… I can call him an insensitive jerk, but I don’t know what its like to watch your spouse degrade into a vegetable. So its not my job to judge, but for those of you going through this and those watching a loved one go through this, try to focus on the love and the hope for health, rather than the illness.
Moving on, once my doctor saw what the antiepileptics were doing to me and how I couldn’t take it anymore, he put me back on clonazepam. THANK GOD!
I had come across Imuran (azathioprine) in my research. There wasn’t much about it regarding treating symptoms like mine, but I figured it was worth a try. It was hard convincing my doctor to put me on a chemo for liver transplant patients, but it was the best thing I did for my health. I started at the max dose for my weight (dosage is based on weight) and tapered down. I relapsed at 50mg, so went back up to 100mg.
Ever since the combination of 20mg hydrocortisone (=4mg prednisone), 4mg clonazepam and 100mg azathioprine, I have been feeling healthy!
I’m back at work as an electrical engineer. I’ve been caving, rock climbing, running, hiking… I’m ALMOST back to my former abilities. I still have a touch of speech and memory difficulty, but I have learned ways to help, like keeping a notebook to remember stuff and asking people to NOT finish my sentences and just let me take a second to get the words out (for those lost speech moments at work, I just pretend I am thinking of something brilliant to say, lol). My muscles still twitch a bit, but it is tolerable. The only thing that is a significant problem is the headaches are still quite terrible. Oh well, I’ll take that over fetal position on the bathroom floor!
I suppose I’m still “sick”, but I feel healthy. My next endeavor is to get pregnant. I’ve been having a rough time. It was hard just to make the decision to actually risk a pregnancy, but actually getting pregnant is proving to be difficult as well. There must be someone who is in my shoes, wanting to get pregnant, so I’ll continue to post my progress about that. That will be in the “Pregnancy” category.
So, I’m happy. I feel healthy. I’m in great shape and I’m ready for the next stage in life. I’m no longer living one foot in the grave. I’m running as fast as I can toward remission and I hope I and everyone else with this illness can get there too.
Best of luck and health to you all!