Health Organization for Pudendal Education

Hello everybody,

Who I am: owner of http://www.ic-today.com
I have Interstitial Cystitis / BladderPAINsyndrome since 2004, diagnosed in 2008 (after 4 years suffering and lots of hospital visits). This year I discovered the compound Palmitoylethanolamide and I have really good results (70% less pain) without any side effects.

I was wondering if someone know the compound Palmitoylethanolamide? In Italy (and since one year in the Netherlands) there is a medicine/supplement called Normast with the compound PEA (Palmitoylethanolamide) which:

Mast Cell-Derived Histamine Mediates Cystitis Pain
http://www.plosone.org/article/info%3Ad ... ne.0002096

Biosynthesis, Uptake, and Degradation of Anandamide and Palmitoylethanolamide in Leukocytes
http://www.jbc.org/content/272/6/3315.short

The ALIAmide palmitoylethanolamide and cannabinoids, but not
anandamide, are protective in a delayed postglutamate paradigm of excitotoxic death in cerebellar granuleneurons
http://www.ncbi.nlm.nih.gov/pmc/article ... 6-0279.pdf

Mast cells express a peripheral cannabinoid receptor with differential sensitivity to anandamide and
http://www.ncbi.nlm.nih.gov/pmc/article ... 2-0309.pdf

Palmitoylethanolamide reduces granuloma-induced hyperalgesia by modulation of mast cell activation in rats
http://www.molecularpain.com/content/7/1/3

Efficacy of palmitoylethanolamide in patients with painful neuropathy. A clinical and neurophysiological open study. Preliminary results.
http://www.epitech.it/public/sys_pagine ... g_2010.pdf

Effect of palmitoylethanolamide–polydatin combination on chronic pelvic pain associated with endometriosis: Preliminary observations
http://www.ejog.org/article/S0301-2115( ... 4/abstract

The effect of the palmitoylethanolamide analogue, palmitoylallylamide (L-29) on pain behaviour in rodent models of neuropathy
http://onlinelibrary.wiley.com/doi/10.1 ... 07326/full

Use of palmitoylethanolamide in the entrapment neuropathy of the median in the wrist.
http://www.ncbi.nlm.nih.gov/pubmed/21483401

Misdiagnosed chronic pelvic pain: pudendal neuralgia responding to a novel use of palmitoylethanolamide.
http://www.ncbi.nlm.nih.gov/pubmed/21483401

Maybe I can learn more here in this Forum about this compound. On the website http://www.ic-today.com you can find more information and some patient experiences.

Haven't heard of too many people on this forum trying it. You can check out these 2 threads:

http://www.pudendalhope.info/forum/view ... f=23&t=614

http://www.pudendalhope.info/forum/view ... f=23&t=320

Members, please post if you have purchased and tried this drug which is apparently only available in Europe. It looks interesting. Thanks.

Hello, thank you for the information . I got a invitation of Shwan Ellis on Facebook, thats why I am here.

I have my own Facebook group called Normast® (Palmitoylethanolamide) with 861 people in it: http://www.facebook.com/groups/127518260684249/
(Search on Normast in Facebook).

To share my experiences:
I did some research and take these pills (Normast and Pelvilen Forte) for 4 a 5 month now. I used lots of medicines/supplements for my Interstitial Cystitis / Bladder PAIN Syndrome disease, diagnosed in 2008.

After some weeks taking Normast my pains were less and I could do more things: walk, shop, work. My life is completely changed after using this medicine (in Italy is called a medicine and in the Netherlands its called a supplement).
I did a little research and discovered that this compound Palmitoylethanolamide has got good results for people with chronic (nerve) pain. Its very famous in Italy and now since one year in the Netherlands.

I hope for other people in the world this will be the solution. I am not 100% painfree, but this compounds will solve this problem instead of all other big side effect medicines I in the world: Lyrica, Amitriptyline, Anti-depressions etc...

I have my own website: http://www.ic-today.com where I put some new acticles about the compound Palmitoylethanolamide.

I hope I can meet here new people who use this compound/Normast. I buy this on http://www.ergomaxsupplements.com

PS: How to use this Normast Palmitoylethanolamide?

Start with Normast sachets, a powder for under the tongue, it dissolves in the saliva and find its way quickly into the blood and all the bodycells. Twice daily for 10 days.
After 10 days switch to 600 mg tablets, twice daily with or without a meal. For 40 days. Evaluate whether pain is clearly less. If so continue with 300 mg Normast twice daily. If no improvement, stop.

Too bad it didn't work for me,
I tried it for over 6 months and spent close to $900 US.

can't say that it hurt or had side effects it just wasn't effective at reducing any of my pain levels.
I too read the research ( done by the company that markets it) and saw the utubes.

If you have extra money it is worth trying, I just found it useless as did 3 other forums members from the Tarlov cyst forums. The only lady that had relief had a cousin in Italy that was helping get it in.

Be aware sometimes it makes it through customs other times it will cost you quite of bit extra with tariffs and taxes.
Mostly I kicked myself for trying i so long. I was despreate.
thankfully the majority of my PN pain is gone, so the days of grasping at straws are over.
hoping someone finds it helpful as it is very expensive.
yoland

Yoland,

Thanks for the reality check on Normast. I was planning to ask my doctor about it.

I'm so glad that your PN pain is gone! How did you end up resolving it?

I tried it for a short while. It didn't seem to help. Actually I haven't heard of anyone else on the pN sites who has been helped. But it doesn't seem to harm, so...

Christi

Maye this website can help you more: http://www.painkillernormast.com

I use Normast and Pelvilen Forte now for 6 month (first months only the Normast 600 mg), and I have 70% less pain. I have Interstitial Cystitis, the baddest IC said my doc!
When I read the site about the research: http://www.painkillernormast.com/slide-view/research/ you will see that its for other disease too.

I hope you all are painfree today!

Hi
I am looking for any info on Positive results for Normast. I hear there is much success in Europe but here in US I have not heard of success, except for one patient with sciatic symptoms who is no longer online.
My doc has recommended it for me as I have not been able to tolerate many of the usual opiod meds for my IC and pn pain.
I have pelvic floor issues (this is how my pain began,with tightness/tension and blocked feeling when trying to empty bladder.. many meds made this problem worse. after a few years of IC treatments etc I developed severe pain with sitting then standing...I now have horrendous anal pain months after peripheral nerve surgery .. anal pain began about 3mos post surgery and now has increased to the point where it even hurts when walking...I have posted a bit before but haven't been on-line much.
the moment I stand to do daily function it begins.It feels like someone is ripping me apart (right at the anal opening). I saw my surgeon who said it was basically nerve re-growth causing pain and that I should "relax"..I am incredibly depressed and scared. Like many of us I have family to raise. all i do is cry ..I feel no hope.
I have started Pt with a very well respected and experienced gal..my hubby takes much time off from work to drive me to my appmts. She has exercises for me to do and reminds me to deep breathe and stay the course with the exercises..I am anxious by nature and know this is holding me back from healing, but I am in soo much pain! I don't want any further surgery. i wish i had met this PT a few yrs ago, but instead had PT with others who were available then.
Pls post any meds that have helped you with Anal rectal throbbing pain...I have tried anal Dilaudid suppositories,.helped a bit at first ..now not as much...but confess I am quite frightened to go up on any opiod for fear that I won't be able to empty bladder.This fear has kept me from trying many opiods.. and when I do try something, sure enough, my pelvic floor freezes, my abdomen tighens and I pee drops at a time.. self -fulfilling!
My pain doc also rx'd methodone pills I started at low dose..and now must go up and deal with side effects. anyone else have
this side effects from meds?
Also would appreciate any info on Normast..I purchased a bunch so probalby will continue with the 600mg pills ..no change from the sachets..Thx everyone ...best wishes to all for the new year!

I used it for about two months but had no pain relief from it at all.
It seems to help some people but for me it was just another disappointment.
It was cheap compared to other treatments I've tried, and is probably worth a try.