Lithium A Bust For Me


“Murphy” has decided recently to move in with me.  I’m trying to be as hospitable as possible, but he has a cruel sense of humor.


After another five weeks on the China SCI Network Lithium protocol, I have decided to stop the therapy due to numerous side effects that were getting increasingly severe while gaining no therapeutic benefit whatsoever.

I have gone from poisoning myself with the initially-recommended (750 mg/daily) dosing to having consistent urinary tract infections, intensely sensitive skin, nausea, severely elevated neuropathic pain levels and bouts of dysreflexia shock.

If the Lithium was going to have any positive effect on my neuropathic pain, I had been told I would’ve felt it within the first 2 to 3 weeks.  This did not happen.

Perhaps the most disconcerting side effect of Lithium has been the recently extreme sensitivity of my skin, which is breaking down.

The worst challenge is that I woke up about two weeks ago with a Stage II pressure sore on my backside.  While this is a known risk for SCI survivors, I had been extremely careful not to develop such an injury and successful as well, having avoided even one incident since my November 2010 hospital discharge.

Stage I pressure sores mean that the skin is not broken but you have a red mark, which will not turn white when you push it, indicating that there is no blood flow to the skin in that area.  Stage I pressure sores usually take a few days to heal.

Unfortunately, overnight I developed a pressure sore that was already an open wound, classifying it as Stage II.

When you are paralyzed and constantly sitting on a wound, the only treatment is to get off your butt and out of your wheelchair and into bed, being turned back and forth by caregivers every few hours to reduce the pressure.

For the first week I tried to just treat the injury with ointment and rotate back and forth in my chair, but that did not cut it.  So, last Thursday I decided that I would spend at most four hours a day in my wheelchair and the rest of the time in bed shifting back and forth until this pressure sore heals up.

So I have been off my bum 20 out of the 24 hours a day for the past four days, and the sore does not seem to be getting worse, but not a whole lot better yet either.

The injury is only the size of a pencil eraser, and those inexperienced with this risk might think not to worry about such a small wound.  However, as I am sure every single one of my SCI friends knows, a tiny pressure sore can spiral out of control very quickly within one week into a life-threatening injury like the one that killed Christopher Reeve.

That’s why I’m spending 20 hours a day now in bed … will keep you updated.

Now, onto the next course of action for neuropathic pain.

Unfortunately, for me Lithium had so many serious adverse effects that I was not able to continue with my Open-Focus work to change the way my brain interprets pain signals from the rest of my body.  Now I will renew my focus on Les Fehmi’s Open-Focus therapy and see if I can get myself back on track with pain reduction.

Secondly, my Dad and I are looking into different types of neural stimulation devices that might be implanted nearby my spinal cord. These stimulation devices, for some patients, allow them to press a button, which sends a shock up their spinal cord and essentially dims down the pain signals.  In the next blog I will try to explain neural stimulation in detail.

In the meantime, my brother Mattias arrives from the United States on Tuesday.  We share a March 1st birthday, and so we plan to celebrate together.

Unfortunately, I’ll likely still be bed-ridden, so it looks like we’ll watching a lot of movies together in bed.


7 responses »

  1. Allie my heart goes out to you trying all these modalities. I read and anticipate every treatment you attempt. Can’t wait to visit and see Kunming one day! The lithium sounds nuts…. I appreciate your objective prospective…it can teach us a lot and u hope to pass your trials along to the rest of the healthcare field here. And hi Ushie!


  2. I’m reading your comments from time to time, my brother is a C5 complete SCI for 6 years. Hope you will start to get better and better and get rid of the other problems adversely caused by SCI.

    Get well,

  3. Oh Ali, I am so sorry that the lithium trial didn’t help. And the pressure sore….Murphy indeed. Healing vibes coming your way from FBV – Jim and I are here for a month and everyone says hello and sends a gentle hug. I will send you and your Mum info on the medtronic intrathecal pump that Nicholas uses with a very successful mixture of bupivicaine and baclofen (you wouldn’t need the baclofen, but many people use morphine in tiny amounts with no side effects and great results). Good luck, Ali. Thinking of you so often. xo

  4. Happy early birthday, Ali. I’m glad Mattias will be there to celebrate with you. Your determination and spirit, along with your father’s, are an inspiration. I learn so much from your blog. It’s the first email I open.

    Dee Huggins

  5. Hate to hear about the sore :(. I hope you can find some decent movie rentals for you and Mattias, and maybe just maybe be able to do something a little more special for your bday!!!

  6. Oh Ali, I am so sad to hear the lithium trial did not work out and now you have a worrying pressure sore to contend with. You really deserve better luck than this. 😦

    How lovely that you and Mattias get to spend your birthdays together. I remember hearing the news that you had been born on his birthday. Please pass on my best wishes to him for me. I hope you both have a lovely day. xx Tania.

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