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Allison’s Success Story

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!

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Categories: Success Stories
  1. October 30, 2012 at 1:55 pm

    I can relate as have HE. I am so glad you were diagnosed so early. I had such a plethora of symptoms that I was misdiagnosed and HE diagnosis missed. I would have these incredible crashed and then extended periods of wellness, which I now understand as flares and remission. I understand my condition as lifelong and modify what I can to manage. I have learned to really listen to my body. I wish you well and appreciate this research site. Brava.

    • Terry Crone, PhD.
      April 10, 2014 at 2:10 pm

      How long had you had it before being diagnosed. My daughter has had flares for 14 years and has never been diagnosed. However, my husband has just begun to have the same symptoms and he has been diagnosed with HE. Wondering if hers could be the same.

  2. denise
    March 18, 2013 at 5:20 pm

    My daughter has been having symptoms of feet swelling and some cognitive issues since 2007. She was diagnosed on and off with lyme bec she had positive IGM antibodies and high thyroid antibodies 650. We only found out about the hashimoto’s in 2010. her main symptom was and has always been fatigue and hair follicle pain. That’s it. She had a brain spect for lyme disease and it showed hypoperfusion of the temporal, parietal and frontal lobes and basal ganglia (moderate to severe). Her neurologist ignored the results bec a lyme dr he hated had ordered the test. The pediatrician accused me of munchauser’s bec i kept taking her from one dr to another bec she just didn’t feel well. Another idiot said it was depression. Finally I went to a neurologist in NYC who specialized in epilepsy just to see if he could refer me. He ordered blood work and a pet scan and pet mri. They both came back abnormal with moderate hypometabolism in the brain. They are saying it is hashimoto’s encephalopathy. I’m scared to death. Right now, my daughter takes 10mg of adderall just to be able to go to school, because she could sleep until 1-2pm daily if I didn’t wake her. No amount of caffeine helps. The dr’s do not believe it is lyme causing all this but the lyme dr believes it is. So the neurologist want to do a spinal tap, an EEG and then administer 1gram of solu-medrol each day for 3 days and then give her orals. I know my daughter (she’s 18) her poor stomach won’t be able to tolerate this. I believe her body is attacking her thyroid and brain bec of 16 yrs of antibiotics and possibly gluten and mold exposure. No dr will believe me. I refuse to believe she has HE. Her endocrinologist doesn’t believe it is HE either because she does not present that way and she excels at school. I am so scared and cry all the time. I have to make a decision to put her in the hospital soon. She is a senior and waiting for college acceptances. How can I tell her this is a lifelong disease? I am a single parent and she is an only child. My heart is breaking. Perhaps this happened because I turned 42 when I had her? Perhaps her decrepit father who never sees her gave this to her (the dr said it is hereditary). She doesn’t deserve this nor do you or anyone else who has this. She was originally offered the IVIG treatment but they changed course. I don’t know why and when I call or email with questions, they get annoyed. They said they discussed her case for hours and this was the only conclusion they could come to and that there are NO guarantees it will work. They told me she should not attend a college more than an hour away from the hospital either. This will crush her because this disease has stolen her teen years, her ability to drive (bec she’s too tired), exercise (when she does, she gets so short of breath, it feels like her throat is closing), a boyfriend and friends (she is too tired to go anywhere)…..and yet she takes hard classes at school and gets straight A’s…for someone like her, the dr said this is so unusual. I do not want her to have seizures or God forbid get worse. I think about what will happen to her if something happens to me. I don’t want her to see my cry and I stay up night after night researching and worrying. Most people tell me to try a Naturopathic dr but in reality, they cannot reverse brain damage, and I don’t believe steroids will either. I don’t want my child to turn into a rage monster or have these horrible steroid side effects. What an insidious disease this is and I am so so depressed about it all. I just want my daughter to have a normal life, and I don’t think this will be possible especially after reading all you’ve gone through. I wish you luck in your future and thank you for posting.

    • March 19, 2013 at 3:27 am

      Your story touched me because it reminds me of mine in many ways. You’re obviously very concerned with your daughter’s health, so I will ask you to look at something you are doing that you’re likely not aware of.
      My mother refuses to accept my diagnoses, refuses to believe I am this ill. I have not only had to go through this alone, but go through it without the people I love the most even believing me. Can you imagine how painful that is? How alienating?
      I’m not accusing you of being a bad mother at all. In fact, I think you seem like a very good mother. As a soon-to-be-mother, I know all we want is for our children to be healthy. And we will do anything to make them healthy and happy. But perhaps, for now, you should consider accepting that this is her diagnosis. Try the treatments for it and see if they work. That’s her best shot at a normal life. And she’ll probably have an easier time accepting the diagnosis than you will. It is not a death sentence. She can have a normal life. I do. I’m happier now than I ever have been before in my life. I’ve grown and learned to appreciate things more. I still do everything I want to do. Sure, it’s harder than it used to be, but I’m young, so I push forward. So can she.
      I don’t know if you saw, but I am a scientist. I went to graduate school for neuroscience. I’m also working on my masters in nursing. I graduated high school at 16 years old. Until just a few months ago, I worked as one of the top electrical engineers at a multinational company. Recently, I have been winning clothing design cmopetitions and my clothing line is sold all over the world. I changed careers due to wanting a less stress job and wanting to focus on my pregnancy and being a mom.
      Your daughter is smart. That’s a blessing to the both of you. Some doctor’s think if you can still tie your shoes with HE, it is unusual. Being smart with HE is not unusual. And I’m living proof she can have this disease and still reach as high as she chooses to. As are all the other people with HE who are researching and posting to this and other sites.

      So enough of the emotional stuff…
      My advice is as follows:
      1. Yes, see a naturopathic doctor. I find they are better at diagnosing gluten and other allergies than even allergists. I am feeling so much better since going gluten free.
      2. Try the solumedrol infusions. They are done in a hospital, and although it was an awful and painful experience for me, it works for HE. No pain, no gain, right? She’s young, she’s not at high risk of heart failure. I think that is your best option of seeing if she will get any better and also seeing if HE is the right diagnosis. Keep in mind, she may have more than one autoimmune disease, I do and so do lots of us.
      3. The fatigue has persisted for me. I got a doctor’s note restricting me to work later shifts. I worked second shift as an engineer for years. And if you’re worried about college, I had a friend who refused to take classes before noon just because he was lazy! She’ll be able to manage. I’ve been in college since my diagnosis too and it was harder than I remember the first time, but I’m also 12 years older now.
      4. I too thought brain damage was irreversible. But it’s not! I was in a wheelchair for 6 months because I had a lesion over the balance and coordination area of my brain. After being on the Imuran for a few months, I was out of the wheelchair. A new MRI showed the lesion had healed! I still have a few lesions, but most have healed!

      Back to a bit of emotion (and I apologize I’m telling you what I wish I could tell my mother). Stop letting depression and guilt paralyze you from doing what needs to be done to figure out how to help her. We are all dealt our cards in life. Have more faith in her, if she’s as smart as you say, she’ll be able to handle it, knowing that although it is a lifelong disease, it is manageable. She can live a normal life. She just needs to find the right medications for her. And being so young, she’ll be able to figure out how to manage before she has an established career and marriage and children. She can get this behind her and move on to a wonderful life.

      I truly apologize if any of that came across as harsh. It wasn’t my intention. But encouraging some difficult action is my intention. This disease is a horrible one, but time is of the essence. Treating it earlier and treating it aggressively gives her the best chances.
      All the best of luck and health to you and your daughter. You’re both in my thoughts.

  3. Leah
    August 2, 2013 at 11:27 am

    I thought this was a really thoughtful,wise and discerning reply with sound advice for anyone
    who has a family member with H E

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