Managing Neuropathic Pain


Hello, Switchboard I’ve Been Disconnected


One of the better explanations I found during our search for ways to manage neuropathic pain associated with Superficial Siderosis was a quote from Dr. Corey W. Hunter¹.

“Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in the hand that senses temperature will stay quiet until the hand gets near the flame on the stove. However, an injured nerve is like a broken telephone that rings when no one is calling (burning) and is unable to get a dial tone when you need to make a call (numbness).
Even when it has nothing of importance to say to the brain, the nerves will send a message and a confused message at that. The “confused” message can be interpreted by the brain as pain or strange sensations like “pins and needles.”
Over time, the spinal cord can become accustomed to getting bombarded by neuropathy paina nerve that never seems to turn off and makes adjustments to account for it. So, even once the nerve manages to stop firing, the spinal cord has become so used to sending that signal that it will take over and keep doing it on its own.”

Dr. Hunter was referring to Peripheral Neuropathy. Neuropathic pain occurs when nerves or nerve function become too impaired to send the correct message from the brain (telephone operator) spinal cord (your switchboard) to the muscles, skin, and extremities.




Peripheral Neuropathy first announced it was here with numbness and burning in both feet. Besides the burning, some members of the Facebook support group we’ve talked to have described tingling in their feet or hands and a sensation of freezing that will never get warm. Nighttime pain can be the worst making sleep impossible.

The pain can be constant or periodic, but usually, the pain is always there in one or both feet so when you combine that with the gait issues walking becomes a minefield.

There are three different types of peripheral nerves, so individual symptoms will depend on what nerves are not working right. A person may experience symptoms in just one area or all three, but the most common symptoms are:

Burning sensation or freezing pain
Sharp, stinging or jolting pain
Skin Sensitivity
Difficulty sleeping because of pain
Loss of balance and coordination
Muscle weakness
Trouble walking or moving the arms
Sweating out of the ordinary
Blood pressure issues
Extreme weakness and loss of strength
Not being able to hold something
Not knowing where your feet are

Back pain, joint pain, trigger finger, and migraine strength headaches triggered by pressure changes as the spinal fluid moves in-out of the still open pseudomeningocele all add their unique gifts to the daily pain.


Managing The Pain


Over the counter pain meds such as Aleve or Advil have been useful over the years, but our neurologist was worried by the amount Gary was taking. Liver problems from chelation medication is already a concern so compounding it by using massive amounts of NSAIDs is not good.

We have now begun the search for an acceptable alternative. Everyone is so different when it comes to pain thresholds, and their particular types of pain to decide what works for them takes a period of trial and error before finding the right treatment combination.

For now, Gary is managing muscle and joint pain with a combination of walking in water for resistance and massage with a natural anti-inflammatory oil. We started off buying a commercially manufactured analgesic oil for the muscle soreness. We found it helped with everything but the foot pain. We’re now making our oil infusion at home with Arnica, Comfrey, Chamomile and Lemon Balm.

Lyrica was the first prescription medication Gary tried for the constant burning, but that did not affect the pain at all. We return to the neurologist in a few weeks so we’ll discuss the next option then.

For now, we’re trying a Traditional Chinese Medicine (TCM) herbal neuropathy formulation made with Corydalis yanhusuo root (which contains DHCB). A 2014 study found that DHCB is an effective analgesic in both inflammatory and neuropathic pain models without tolerance build up.

There isn’t a pure form of DHCB available on the market yet. We were able to find a formula manufactured in a FDA inspected facility that helps with neuropathy foot pain. It’s too soon to say if it’s helping, but we will report the outcome. There have been zero side effects, and it doesn’t contradict any other medications.

DHCB study excerpt:

“In a plant used for centuries for its analgesic properties, we identify a compound, dehydrocorybulbine (DHCB), that is effective at alleviating thermally induced acute pain. We synthesize DHCB and show that it displays moderate dopamine receptor antagonist activities. By using selective pharmacological compounds and dopamine receptor knockout (KO) mice, we show that DHCB antinociceptive effect is primarily due to its interaction with D2 receptors, at least at low doses. We further show that DHCB is effective against inflammatory pain and injury-induced neuropathic pain and furthermore causes no antinociceptive tolerance.”

You may read the full study here: DHCB Study

¹Dr. Corey W. Hunter is a pain management specialist at the New York Pain Management Group. A member of the Neuropathy Association’s Neuropathic Pain Management Medical Advisory Council.

About Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.

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