I want to avoid taking hard-core drugs to control tn. I do not want any hard-core surgical procedures either. I am going to try to get my doctor to prescribe low dose naltrexone. It has had remarkable results with many people with trigeminal neuralgia. No side effects and inexpensive. In the mean time, I have been applying topical gallium maltolate (Gallixa®) which has helped myself and others considerably.
Unsure where you are coming from with this, naltrexone. Can't believe your quite true, why do you think it is going to help, and having mentioned your research and TN where is it? I find some reference to MS and diabetic neuropathy, where are you coming from?
Go to treato.com and type in low dose naltrexone and trigeminal neuralgia. You will find a number of people who claim that low dose naltrexone relieved their symptoms of tn. Is it perfect science? ... no. Is there any perfect science out there concerning tn ... no. Nobody understands this affliction. What may help some does not help others. I am just a guy diagnosed with tn trying to find my best options. I look the information over that is available, use common sense, and roll the dice. Any treatment available is a roll of the dice. Here is what I ask myself. 1. Has the treatment worked for others? 2. What are the risks? 3. What is it going to cost me? 4. Does this treatment make sense? In the case of low dose naltrexone: 1. Yes it has worked for others. 2. It has been proven safe by the FDA at a 50-milligram dose. The low dose is 4.5 milligrams or less. I have read nothing about side effects. Some people just take it as a cancer preventative. 3. Cost under $40.00 a month in the U.S. may vary between pharmacies. 4. This treatment makes sense because this drug has been used successfully for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and 30 or so other autoimmune diseases. Anyone who has researched tn knows that there may well be a connection between tn and the immune system in some people. In some people, it may be a blood vessel hitting a nerve and in some people something else. Here is my point. I am a man confronted with a myriad of treatments for tn. It is overwhelming and it would take many years to try them all. Most of the treatments are just plain bad. Dangerous and iffy surgeries. Toxic drugs with terrible side effects. After weighing everything out the first thing I would try is low dose naltrexone. I firmly believe it should be the first course of action by any intelligent person who has been diagnosed with this ugly disease.
Thanks Joe, just wondered where you were coming from. That adds clarity.
Used for autimmune and used successfully are two different things. Aside from intended use (withdrawl from opiates) the only case that a "real study" has shown marginal success. is with Fibromyalgia. There are a few folks that have made a fortune with books about it and alternative clinics that have dominated keyword searches on the internet. Safe is relative - it has MASSIVE side effects. Now folks are willing to try anything when desperate I get that. Just about any treatment has 25% success rate in the shorter term. This stuff is way too off the wall for this site. We are unapologetically evidence based and even the we are pretty open. There were extensive discussions here 4 years ago. It was loser then, it is now.
BTW our "evidence Based standards" are pretty simple: verifiable and repeatable scientific experiment/study that proves causationally (not correlationally) evidence. LDN fails on ALL counts
“We are unapologetically evidence based”… then why tell a user not try something? he may try it and come back and offer his experience. Isn’t that evidence? Just because its not coming from a medical journal doesnt mean it is invalid.
“This stuff is way too off the wall for this site”… why is that? we have a sub forum for alternative medicine and LDN has been used fairly widely for various pain conditions. I think it is completely within reason to bring up LDN. Definitely wrong to claim it is a solution to TN, but we are dealing with a very difficult problem that so far has no good solutions, so i dont think its unreasonable if people want to try some alternative options. As long as the OP is aware that this is not in any way endorsed by the medical community as a treatment, i see no reason why he shouldn’t try it. And you shutting him down by telling how his post is “off the wall” for the forum goes against the idea of an open patient forum.
Besides, this is a patient forum not a scientific review board at a medical journal. Different people come from different background. I even read a post where a user was claiming “prayers” healed his TN.
I think you are completely correct in letting him know that LDN is not endorsed for TN, but shutting him down like this is very discouraging and not helpful in cultivating a supportive atmosphere.
Because LDN is way beyond “alternative” it is dangerous, it costs boku (non-insurance reimbursed dollars) It is an entire industry that has indeed “used fairly widely for various pain conditions” that have no connection to each other, no commonality and in fact are often opposite in cause. It is known to aggravate neuralgic pain and make the users of any common analgesic deathly ill and requires then to abandon many if not most traditional treatments.
Testimonies (anecdotal evidence) is no evidence at all an EXCEPT when use as evidence of efficacy for other to use, it is almost always evidence of a quack at work.
Don’t confuse supportive for a handful of vitamins or other pain relieving "stuff’ (massage, heat, accupuncture, chiropractic, cold packs, topicals etc) as support for a powerful and dangerous medication that if improperly used can cause irreparable harm or death. I was being as “gently discouraging” as could for a program that has been expanded way beyond any evidence or study. The mods in our other communities generally delete anything regarding LDN. Not a week goes by that we do not have an "LDN practitioner promoting themselves and their Voodoo science one or the other of our communities.
That being said THERE ARE uses for LDN regarding facial pain. Studies going back 20 or more years have found that a course of six weeks or so can reduce the amount of hyperalgesia for those treated with opiates. however actual studies with controls and all that good stuff found that the effects on the endocrine system were not worth the risk. (actually similar to prednisone) They rarely use it for its intended purpose anymore for many of the same reasons.
You might also find this of interest:
I think giving the OP the relevant information (links, previous threads etc,. ) is what is needed when they bring up options that are clearly not efficacious; rather than presumption of quackery and malicious intent. He is clearly just another frustrated TN patient and just desperately trying anything that seems semi-plausible.
Having said that, I have started taking LDN myself recently. I have been blessed with chronic fatigue syndrome (you might say a quack diagnosis) in addition to TN.
On the CFS forum many people try out LDN, the response is half and half i would say.
I can tell you so far it has helped my CFS and worsened my TN. When my experiment with LDN finished (not sure how long i can tolerate the sleeplessness) I hope to come back here and write my honest experience on how it affected my TN. And when i do i hope that you do not delete my post. I assure you i hold no stake in any type of LDN related websites.
Patient testimony is definitely not evidence, but when you are dealing with such a mysterious illness that lacks a solid disease model patient testimony counts as something. Lets say there is enough people on this forum who say X or Y works then it may not be sufficient evidence that X is the solution, but enough to warrant me, as a desperate patient, to maybe consider educating myself about it.
CFS is not a quack DX but interestingly enough Could be a cause of your TN. (or at least one of the forms Myalgic Encephalomyelitisis is. CFS is also one of the very few syndromes that has been studied for LDN there is a slight improvement over the placebo and larger scale studies are being done. So lets hope you are one of them!!
Keep in mind while the quackers talk about FDA approval, it is very a very short term usage, and the risk factors balance against very serious disease (death type disease). The medication has been replaced for the most part with something else. That "safety doesn’t transfer to longer term low dose which is why its VERY hard to get low dose dosages.
The problem with adding links etc. is there are none say XYZ DSOESN’T work for ABC and has these problems. When it comes to the “cult drugs” such as LDN the internet SEO is so pammed, that the first 12 page or more for many of these things give only the quacker view. You are likley to end up in a “false News” site like treato where everything is equal - good science or bad. So one can say he has educated himself but its not even close. The real research done is in web pages, its not on PUB Med which includes just about anything good bad or just plain nuts, its almost impossible to find on Google Scholar as well.
Sooooo what does one do? Real libraries (most medical Centers have one) with real journals is a good place to go, Your doc who is willing to admit there are few answers for some conditions has likely followed the research or at least has had it presented in his annual required education hours can point you. Various patient advocacy associations (the legitimate ones) are usually on top of it.
Patient testimony is helpful when it is but very harmful when it is not. People on the forums are generally pretty desperate and outliers of the disease. Those that have gotten better usually move on pretty quickly. They are often highly suggestable and desperate for help. That is WHY these boards are very heavily moderated. We don’t want to control discussion but we do want to direct it. For now LDN just isn’t a great topic for Facial Pain Patients. I don’t hide my prejudices well either
I guess the problem that moderators on patient forums deal with is the same as the larger problem we are facing these days when it comes to the internet.
Curate/control too much and you take away the openness of the forum, dont do enough and whacky ideas end up getting the same amount of eyeballs as real information and your average patient gets the impression that LDN is as valid of a treatment as gabapentin just because there are as many forums talking about LDN.
Just curious, what did you mean by this: "The medication has been replaced for the most part with something else."
Are you aware of some other medication for chronic fatigue? please let me know (not trying to turn this into a CFS forum lol)
Also if you have any links on the connection between ME and TN please let me know, i have been baffled by my symptoms and it would really help me if i can find some information on my two seemingly independent issues (TN and ME).
No the replacemnent is for Naltrexone for addiction which is now used for opiates only. When the FDA started requiring a Black Box warning for Naltrexone (about 2011 or so if I remember) they did a reformulation called VIVITROL. Its the same but different. For alchol they went to an entirely different med.
I’ll see what can find about the Myalgic Encephalomyelitisis/FMS link I cant rember clearly which was the horse and which was the cart in the studies.
Here is and excellent report that discusses the connections between “all of these things” Essentially where the medical is at is physical and chemical changes take place within the body whereby chronic pain is experienced on a physical level even after the origin (if determined) of the pain is gone. In other words, the body does not have the ability to return to previous levels of homeostasis causing an on-going situation of constant or recurring chronic pain (Gatchel et al. 2007).
Consequently many treatments simply don’t work High on the list is MVD even if there was a compression eliminating it doesn’t return the body to normal.
A commonly overlooked fact about MVD is that in the late 90’s early 2000’s is that this surgery was used to treat both fibromyalgia and CFS.
The honest truth is that while many eschew psychiatry (not to be confused with psychologists) is where the Much of the answer lies. Psychiatry seldom involves talk therapy and the couch but has moved into a n evidence based mode and a constant evolving and developing psychopharmacology. In short returning damaged brain chemistry to normal. Most of the medications used to commonly treat both Facial Pain and CFS/FMS (yes they are different but varients of the same basic disorder) have come from that area of research.
So steering back to the original discussion of LDN. What LDN does is effect the opiod sensors (part of the immune system that controls pain nothing to do with narcotics) I’m old enough to remember a margarine commercial thats main line was “don’t mess with Mother Nature” When messing with brain chemistry we start on a slippery slope unless we have really good data involving present, long term and permanent effects of this intervention short term gains can lead to permanent changes that aren’t so good… (One of the reasons they quit using MVD for CFS and FMS while the successes we great, the failures made things much worse and permanent - one of the reasons docs are backing off MVD for Facial Pain. Even if the situation was caused by nerve compression eliminating it doesn’t solve the chronic pain issues and infact while possibly eliminating acute attacks makes the chronic pain worse.
In any event if you can plow through all some 123 page of the report the connections should become more clear. There has been a lot of progress in the area since but the basics are the same…
MVD was used to treat CFS and fibro? Why would vascular compression of the trigeminal nerve cause fibro/CFS? I googled “MVD and CFS” and i didnt find anything.
“don’t mess with Mother Nature” I agree with you, and i would never have done that. But when you are faced with medical issues that are completely destroying your life you end up resorting to extreme measures. Also taking antidepressants, anticonvulsants, etc., is also messing with mother nature.
Thanks for the report! i will read it soon.
Elective Brain Surgery is a brutal business. MVD is used for a number of nerve compressions has been around since the late 60’s. Everyone has some nerve compression somewhere (most common are “herniated discs”) and there is always someone willing to try performing surgery and someone willing (or desperate enough) to let them. Every symptom of CFS and fibro can be attributed to a nerve compression as can those of facial pain. Even if it is as report goes into, the pain management sytem has often been"altered" in a way that simply relieving the pressure no longer relieves the symptoms.
My Grandfather BTW was a world renowned pharmacist. I hate to tell you how LITTLE medicine we ever got. We did get to use Anacin occasionally as that was one of “his” that he sold along with a very popular cough syrup Cheracol (no longer available in his formula) He often said no one uses less medicine than the families of apothecaries and physicians. You are right, what are we going to do when nothing else works??
I am convinced that our trigeminal nerve has been compromised, and any little thing that touches it sets it off, but that there is nothing inherently wrong with blood vessels touching, or even wrapping around, a healthy nerve. A compromised nerve is also much more susceptible to damage.
I believe we are on a continuum, with multiple sclerosis and fibromyalgia being further down the road of nerve damage. For some reason, the trigeminal nerve is particularly sensitive, the canary in the coal mine.
I also think that functional medicine is our only hope for real answers–treating the root of the problem. All these awful meds just treat the symptoms, and I’m not convinced that a lot of them don’t also do more damage along the way.
Anyway, I’ve thought a LOT about trigeminal neuropathy and it’s causes, and someday I’ll have to write out my thoughts. This is not natural, our nerves should be able to heal, why can’t they?