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Many Options, and Much Confusion, in Neuropathy Treatment (Part 2)

Editor’s Note: It is recommended that you speak to your healthcare team before starting, stopping, or changing the dose of any medication.

The drugs to treat neuropathy fall into two classifications: antidepressants and anti-seizure medications, though it is not totally clear why they work for nerve pain. When I told my doctor about the tingling in my feet, he prescribed gabapentin (trade name Neurontin). It didn’t make the pain go away, but it took the edge off. When I cut down with the doctor’s permission, I got shooting pains in my feet at night. Then I went back up.

I wrote a story, for the MedShadow Foundation, on the side effects of gabapentin and its sister drug, pregabalin (Lyrica), as well as of the other drug used to treat neuropathy, Cymbalta, (duloxetine, a serotonin and norepinephrine reuptake inhibitor.) For some reason, people use the gabapentin’s generic name but the trade name for the two others. Maybe they say Lyrica instead of pregabalin because Lyrica is easier to say?

Common side effects of the three drugs include fatigue, nausea, drowsiness and confusion, and weight gain or loss. I knew even before I wrote about it that gabapentin caused fatigue. For that reason, I didn’t want to take more than the minimal amount. Pharmacy Times states, “The established therapeutic dosing for gabapentin in neuropathic pain trials is 1800-3600 mg/day in 3 divided doses in patients with normal renal function.”1 BUT studies show that many take less; in one study the median daily dose was 900 mgs.1

If you are confused, you are in good company!

When I interviewed David Cornblath, MD, professor of neurology at Johns Hopkins Hospital in Baltimore, he said “relief rarely occurs until people get to 1,800 milligrams a day, and many are under dosed.” I told him I took 1,500 mgs. a day, and he said it was nowhere near enough. But if anything, my goal is to try to take less, not more. People ponder if they would do better with Lyrica or gabapentin, or vice versa, but I went to specialist in Boston and he said they are basically the same.

I also take Alpha Lipoic Acid, an antioxidant that has been shown to reduce peripheral nerve pain if taken at 600 mgs. a day.2

Adding CBD to list of treatment experiemnts

Last but not least, I use CBD drops under my tongue and cream on my feet. I have also tried a combination of THC – the psychoactive part of the cannabinoid plant – along with CBD. I take one-to-one, equal parts of each. For this, I have gummies and drops and cream for my feet. I got some to smoke and to vape – the faster way to get it into your system – but it made me cough. I think that if I keep at it, the plain CBD drops during the day and the 1 to 1 at night will be the best bet for relieving the symptoms. Sometimes I think it’s really working (yay!) and at other times I get discouraged by an increase in pain out of the blue, but I’m not going to give up.

I wish it was as clear as taking two Tylenol for a headache. The Foundation for Peripheral Neuropathy is a great resource with a thorough explanation on their website.

To get the THC, you have to be in a state where marijuana is legal. It is legal in Massachusetts, where I live, but for $200 I went the extra mile and got my medical marijuana license. This entitles you to bypass the line, go to a separate part of the dispensary, and avoid the state tax.

The challenge of finding the right combination

I think I didn’t start out right; I take the recommended dose, don’t feel any relief, and then give up. But you have to keep taking it for a cumulative effect.

During the day, I am more comfortable with the straight CBD. Once I took too much of the THC combination and realized I couldn’t get off the couch. The neurologist was all for my experimenting with this stuff. They don’t know for sure, and they are interested in anecdotal evidence.

I told him that the neuropathy bothers me less when I play tennis, probably because my mind is on something else, and also maybe because my circulation is better. He had me walk slowly down the hall and then walk quickly and confirmed that I am steadier when I walk quickly. Therefore he also said to play more tennis. One time I ate one and a half gummies, or seven mgs. of a 1-1 combination and then went to play tennis. I don’t think it hurt my game, but I’m not going to make a habit of it.

Read Part 1 of Ronni’s experience, Neuropathy is a Real Pain.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. Appropriate Gabapentin Dosing for Neuropathic Pain. Pharmacy Times. Available at https://www.pharmacytimes.com/contributor/jeffrey-fudin/2017/12/appropriate-gabapentin-dosing-for-neuropathic-pain
  2. Alpha Lipoic Acid for Symptomatic Peripheral Neuropathy in Patients with Diabetes: A Meta-Analysis of Randomized Controlled Trials. International Journal of Endocrinology. Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3272801/

Comments

  • Ann Harper moderator
    1 week ago

    My daughter has also experienced neuropathy. I think for her, it’s easing up a bit. I’m so sorry for all the pain you’re going through, but I want to thank you for all the good information. I hope you find something that works for you all the time. At least tennis is helpful. Good luck to you.

  • Carole McCue
    1 week ago

    Ronni,
    Thank you for sharing your experience. It is frustrating when expected meds may not work.
    I applaud your determination.
    God bless you🙏🏻

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