Neuropathic Pain Updates … and around we go!

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I woke up yesterday and realized it has been about two weeks since my last post. Sorry about this and apologies for the delay.

Last week my Dad went on a scouting mission throughout the sprawling metropolis of Kunming to investigate what the local medical community knew about hyperbaric oxygen therapies.

Together with Wenjun Liao (“Jenny”) who is our translator and now very good family friend, Dad visited several major hospitals and was able to find a particular barometric oxygen pressure chamber that I would be able to slide right into.

Medical School

Chamber 1

Chamber 2

Now that we’ve successfully found a workable hyperbaric chamber in Kunming, I am waiting to hear back from my brother Mattias, who is touch with doctors in the U.S. seeking to devise a treatment protocol that would be safe and possibly effective for me. For example, we need to understand how deep I will go down, how long I will stay under and at what pressure, how many times a week to enter the chamber, how much oxygen should be administered, etc.

While barometric chambers of many sizes and designs are manufactured in China and are seemingly in pretty wide use, the concept of using such a device for neuropathic pain associated with spinal cord injury is a new idea over here.

In this regard, the particular experiments that caught our attention were carried out by a professor working at Johns Hopkins University in Baltimore, Maryland.

While I wait for the protocol details, I’m still taking the Alpha Linoic Acid (“ALA”) supplement at 600 mg daily, and I think this might be working at some level. In the last 2 to 3 weeks, for example, I would say my neuropathic pain levels have been reduced by about one or two levels from when they had been stubbornly for many months.

Now when I wake up in the morning I generally start with a neuropathic pain level of about 6 to 7 (1 = slight pain and 10 = practically unbearable pain) and generally by late afternoon the pain levels creeps back up to between an 8 to 10 depending on if there’s something irritating my body that day.

During my lithium therapy, to give you an idea, I was at a constant 9 to 10 level 24 hours a day for weeks on end. So, level 7 pain on a consistent basis over the last two weeks, while still really uncomfortable, is nonetheless a welcome reduction.

On the other hand, I cannot be sure if the very recent pain reduction is due to the ALA supplement, because I have recently also made some pretty significant changes to my diet. This is a classic example of the experimental risk of changing more than one variable at a time, but in effect that’s what I’ve done.

Here’s what’s up.

I recently finished reading a book that I highly recommend to literally anyone who can read and has the least interest in their own health. The book is titled “Grain Brain” and was written by an exceptionally experienced Florida neurologist named David Perlmutter. I have the Kindle edition, which makes reading for me really handy.

I’d already been eating pretty sensibly, being a vegetarian/vegan and staying away from any and all processed foods/refined sugars. So now I’ve decided to go gluten free and cut from my diet most sugars, even including most fruit.

Since gluten has an outsized neurological impact of which I’d been unaware before reading Dr. Perlmutter’s book, I would like to see if eliminating gluten and greatly reducing even fructose sugar has any effect on my sleep patterns, which are just terrible.

In addition, I’m interested to see if I am in fact sensitive to gluten, which may or may not affect neuropathic pain.

Interestingly, it turns most people have measurable gluten sensitivities even if they do not show immediate intestinal symptoms. Instead, the risk is longer-term neurological impact, culminating in dementia or Alzheimer’s disease. Again, I HIGHLY recommend this remarkable book.

Finally, I have just re-launched myself with Dr. Les Fehmi’s Open-Focus meditation technique. I’d gotten knocked off track during January and February on account of my horrific experience with lithium carbonate. Will keep you posted.

All-in-all, then, I’ve undertaken a number of new experiments this spring as we stay focused on trying to find workable solutions to my persistently high, and frequently debilitating, neuropathic pain.

Otherwise, things are all pretty quiet here on the China front, where recent spring weather has been summer-like. Presently I’m holding down the fort in Kunming with just my two loyal my caregivers and, of course, our much-appreciated and loved Jenny. My dad is presently in Hong Kong having a busted tooth repaired while my Mom is back in North America for some R&R.

7 responses »

  1. Ali,
    I read both Grain Brain and Wheat Belly and have been gluten free for 2 years. All migraines disappeared and sinus issues are no more!And my arthritis is quiet as well so all those pains in my 69 year old body are helped by this gluten free regimen. So good luck with the neuropathic angle. We hope it has an effect. We are looking forward to being with your mom soon!! Hugs to you. Barbara and Steve
    Sent from my BlackBerry® wireless device available from BTC.

  2. Ali, I am currently reading Grain Brain. I hope cutting out gluten and fruit sugar will have a significantly positive impact on your pain. I’m glad you have the hyperbaric chamber regimen on the horizon. I miss you!!

  3. Hi Ali,
    I’m so pleased to hear you pain levels have come down a bit. That’s great news. I hope it keeps going in the right direction.
    Thanks for all the useful reading suggestions. I shall give them a go.
    Sending you lots of hugs and best wishes,
    Tania.

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