Instituut voor Neuropathische Pijn

A patient living abroad, in the USA consulted us via a pain website, as she was suffering from severe burning neuropathic pain due to small fibre neuropathy. Classical analgesics didn't help. Normast reduced the pain to half.

This is the first post we received:

I have been researching Normast ever since a friend on another forum recommended it. However, I do not know how a person in the U.S. can get it. Can you tell me? 

One week later: I have a friend who take Normast and says it helps her tremendously with her peripheral neuropathy. I am hopeful that it will help me, too. I have only taken one dose, so too soon to tell.

Thanks.R.... in Wisconsinsuffering from small fiber neuropathy 

Two weeks later: 

I have been on Normast for 6 weeks and have seen some improvement, maybe about 25% less pain. Please tell me your reason for reducing the Normast dose at 6 weeks. My pain was completely debilitating before Normast and I do not want to go back to where I was before. I could not bear it.Thank you.R....

Some weeks later 

I have switched physicians because my previous physician would not help me with this. My new doctor is very interested in treatments used in Europe. She has been reading on the internet (your web site and others) about Normast and is monitoring my use of it.She also suggested the amitriptyline cream for my feet, but it must be compounded and my government insurance will not pay for compounded drugs.

At any rate, the pain that is most bothersome right now is in my eyes, nose, and mouth, so cream will not work. I am now completely off of the prescription durgs that were so bothersome to me. I now take Normast and alpha lipoic acid. I have no trouble with these and am very relieved.

Thank you again for the wonderful work you do. I was in complete despair before the Normast started to work. I have idiopathic small fiber neuropathy that continues to spread. The Normast has turned down the intensity of the pain even as it spreads. Life is not wonderful, but it is bearable. It was not before.With thanks,R 

Some weeks later 

Jan, I did decide to up my dose of Normast to three times a day because I have idiopathic small fiber polyneuropathy that continues to aggressively spread. I found that after a few days at the higher dose, my pain lessened and now I have about half the pain I had before. The flares are shorter and I can look forward to some low pain days which is what my life bearable.I have been wondering if there is any reason to:1. try to reduce back to twice a day?2. continue to use the powder rather than the tablets (since the tablets are cheaper and my funds are low)? Is there an absorption issue with the tablets?I have had every kind of test available and the doctors do not know what is causing my neuropathy and why it is spreading so rapidly. They guess it must be autoimmune in origin and do not expect it to get better. Since my immune system will always attack my nerves, I am guessing that I will always need high doses of Normast. I know it is just a guess but I am wondering what you think.Thank you very much!R 

Our last answer:

Dear Ruthanne,We have treated some patients with small fibre neuropathy and severe pain (see http://www.youtube.com/watch?v=k1-0DExkNMY ) and decided also to increase the dose. 600 mg twice daily is the base dose for painfull neuropathy, but higher doses are possible.

The granulate for under the tongue we recommend to keep in house for if pain is growing more severe, to treat for instance extra with a sachet a day in addition to the tablets. One of our patients decided himself to increase the dose to 4800 mg/day. We do not recommend to do that but it was reassuring that no side effects emerged.

Furthermore, in our Cavalier spaniels suffering from severe central neuropathic pain we also dosed higher, with good effects.Algonerv cream for pain in neuropathyMeanwhile we also recommend to use a cream consisting of a compound related to palmitoylethanolamide on the skin. This cream is called Algonerv and adds to the therapeutic effect of Normast.

At our website you can find details on this cream. The mechanism is analgesia and inhibition of inflammation, as explained in:

Recently, a new drug containing PEA has been approved by the Food and Drug Administration for the treatment of dermatitis; moreover, a recent pilot study aimed to assess the efficacy and safety of the twice daily application of a topical emulsion contain- ing 2% Adelmidrol, a PEA analogue, in 20 paediatric patients suffering from atopic dermatitis.

This study showed an 80% increase in symptom resolution (51) via the inhibition of NGF release from mast cells. (Cannabinomimetic Control of Mast Cell Mediator Release: New Perspective in Chronic Inflammation, by D. De Filippis, A. D’Amico and T. Iuvone; Journal of Neuroendocrinology 20 (Suppl. 1), 20–25 )

So I would keep a high dose of Normast, try the Algonerv cream; you have to use the cream at least 6 weeks and apply twice daily to also give the low dose capsaicine in the cream a chance of action. Both compounds enhance each other's efficacy. Hope the anti-inflammatory activity will create a more stable environment for you small nerve fibres!Good luck!