Flans - new member
 

had tn for 7 years...all the usual pain,and distress....all the usual medications,,which made me sick,,i have liver damage,,with raised levels of amonia in my blood stream,,,amonia is a well known nuro toxin,,which likes to acumilate in the brain ,and it attacks nerves,,i now keep my protien intake as low as possible,,,now,,for the first time in years i am allmost free of pain,,am a 1,,in a scale of 10,,,,no medication is needed,,,but you dont need a damaged liver to be supersensitive to amonia,we eat huge quantities of animal protien,which contains lots of amonia,,,,the fluctiating nature of this illness,could be due to our protiene intake at any given time,,and our ability to process it,,horses get trimenal nuerilgia to,,,,vets discovered it was down to the amonia in their stables,which they were breathing in,,they even gave the horses tegretol,,ha ha,,didnt work,,,,it is impossible to have bilateral tn,,then say its a blood vessel,,,on each side,,,at exactly the same time,,dont think so,,,

i can induce my tn,,which i have done,,by eating lots of protien,,tn comes back with a vengence,,,reduce protiene intake,,tn allmost gone,,,there was an diet,called the atkins diet,allmost pure protien,,,,people were fainting,going into a coma,,,getting sick,,they could not cope with that much protein,,,nothing was wrong with their livers,,,and they had nerve pain,,amonia,,,,some people are supersensitive to even the smallest amounts of amonia in there blood stream,,and who would think,,food could cause this illness,,,allchoholics get tn,,because they cant procsess protein,,,because of liver damage,,,amonia,,,,,,protein would explaine the the fluctuating nature of tn,,,if a horse can get tn from amonia,,why not us,,,

the abillity to induce my tn,,,,through protiene intake is proof possitive,,for me at least,,for the cause of my tn,,and i suspect for many others to,,,but remember,,if you go to docs for amonia blood check,,remember,,some are supersensitive to tiny amounts,,and no one liver works perfectly,all the time,,,,in bilatteral tn,,is the perfect example of whole brain involvment,,not a blood vessel pressing a nerve,,many with tn,start with one side only,then progress to bilateral,,,which makes sense,if its amonia,,

many will disagree with what i say,,,,but,,,,i got my life back,,,,,this is no remision,,,because i can induce my tn,,,at will,,,who,,would have thought that that burger ,may, be the cause of your tn,,,i got sick of taking medication,going to doctors,,specialists,,who did nothing,who could never feel my pain,,,hope it works for anyone who trys it,,,ps,,,i eat 80grams of proteine a day,,,very very little meat,,,,got my bloods checked,,they were ok,,,,,my docs,amazed,,love to you all

Hi, I'm new here too. Welcome :Wave-Hello:

What you say is very interesting..diet affecting the pain? I wonder what others might say on this topic? I need to read some more about this.. do you have anything to share?

ammonia crosses the blood brain barrier,and settles inside the brain,,thats the key....ammonia is nuro toxin,,unregulated suger control in diebetics, causes nerve damage,including tn,,,,,food does cause pain,,,or at least its by products do,,,to say,two blood vessels are pressing on two nerves at exactly the same time,,on opposite side of the head,,for me,,thats improblable,if not impossible,,,but amonnia could do that,,,an irritating agent would olso progress over the years as the ammonia stripps away the outer nerve sheath,,think its called demyalisation, humans are not desinged to eat huge amounts of animal protiene

all this surgery..and drugs.doctors give out,,may,,not be necccesary,,,it could be down to how the individual is able to process amonnia,,,,even the smallest amount will cause damage,,somwhere in the body,,,,its said tn is an old persons desease,,,may be because thier livers and kidneys no longer work as efficiently as before,,,you can read thousands of posts about tn,,,,but no where will you find a cure let alone the cause,,and there has to be a cause,,,for me,i have no doubts its amonnia,,,,because my liver is damaged,,,,but you dont need liver damage to have high amonnia levels,,you may just be supersensitive to even the smallest amout,,which wont show in blood tests,,,

ammonia is well known to damage nerves,,,i never gave up on the persuit of the cause of tn,,,i find the cause i find the cure,,,and i did,,,,if you doubt me,,i can induce tn anytime,by increasing my protein in take,,and who would have thought food could cause tn,,,or technicaly speaking,,unmetabolised metabalites,hope this helps someone with tn,,,but knowing human nature,they will doubt it,,,,if you do doubt,,,deseases always have a cause,,,dont they,,,,,

I am glad you found the reason or cause for your t.n. and hence your control over it. This is good info to share that may help others find control and get rid of the pain monster. t.n. has many causes from sinus infection spreading to nerves and blunt trauma to face ,dental work damage, compression of the t.n. nerve .... it is very useful to know the cause if possible most times many are not given a cause but none of us are giving up trying to find a cure or the things that will help . each of us are different and so are the things that will help. what helps one may not help the next person. so the more we share the more chance we have helping someone else out. Thanks for sharing with us and hope to keep seeing you around here.
PEACE
BMW

had my nuro surgeon say,,,we realy dont know .what causes tn,,as for nerve compression,,,it cant be that in billateral tn,,,nor does dental work explain it,,,its something we are not seeing,,,,tn was recorded 150 years ago,,,,no dentists then,,,,i asked him,,,does he think tn has one cause,,,he said...yes...same symptoms,same pain,same medication,,,all with differant causes,,,no,,,,why do you think people with tn,usualy have it on the right side first,,,,,its because ammonia concentrates on that side of the brain first, am no doctor,,but frontal cortex has high affinitty to amomnia,,,it has ammonia like receptors,,,,there is but one cause,,,,

ammonia is nuro toxin,,it allters brain chemistry,,,if a horses can get tn from breathing in ammonia,,why then can we not,,,,vets gave horses nerve blocks in the mouth,,same way a dentist does,,,tn gone,,,,they could ride the horses,,,then tn comes back,,,,,,if you alter brain chemistry,,you allter signaling process,,,,sailors drinking sea water which alltered brain chemistry with salt,,,,tn was the result,short lived though,,.tn one cause only,,,it is perhaps a desease of the elderly,,,because with age,liver and kidneys are no longer filtering as they used to,,,that is a big clue to this illness,,there are not a multitude of cures for the same illness,,or any illness,,,ther is but one

yes there are different types of T.N. Atypical Bi-lat , different neuralgia and neuro pathic type pain. I wish that by lowering my intake of protein, my face pain would be reduced or even gone. I have a stim implant to interrupt the pain signal because of nerve being snapped on right side and having plates and screws holding each side of lower jaw together.
Can I ask how you finally found out it was your ammonia levels and intake of protein? did you have blood test by doc or something? Doctors Well A true blue Good doctor is very hard to find but Doctors are what many of us have to rely on and for many the search for a good one never ends :( I work cleaning and probably breath ammonia with the cleaning products we use . yikes on the thought of that :eek: . what does your neuro say about your cure? are they going to test for levels of ammonia in other t.n. patients they have in the future? or is it going to be only if the patient has knowledge enough to ask. always good to rule out the easy things first and get to a "happy ending "a.s.a.p.
I do have to say for everyone I know in the forum here not one wishes or enjoys having to be where they are on meds or dealing with surgery or on feeding tube because they cannot eat. we are all here just trying to help one another find hope, keep going,, and share contacts info leading to a remedy ,cure for someone anyone. please dont be so hard on the ones who might not be able to see your cure as a cure for them. sorry but I am one of those. what helps me does not help allot of others but if it help just one more ... much like you eh lol you might want to continue under this thread you have here and keep adding to it share your story more . I think that would be a helpful good thread to read and be able to ask questions .
like what age were you when you first rx with T.N. . What meds were you put on? do you know of any good doctors? what state/ or country do you live in ? it is time for me to be off the com. Hope to chat with you soon.
PEACE
BMW

I found this post quite intriguing and had a couple of questions for the poster. I have bilateral facial pain/numbness over last year and a half. Have seen 2 neurologists and told symptoms don't fit the criteria for tn. have been diagnosed with a 'benign malfunction of the central nervous system' (whatever that means)and my GP thinks it's Atypical Facial Pain. Medications haven't worked for me at all. I found the post interesting though as when i was first sought help i had a routine blood test which showed two things, the first being that i have type 2 diabetes and the second was an inflamed liver. Thought i might try to cut out meat altogether for a couple of weeks just to test it out. Is amonia found in fish? Are eggs ok? Am aware that it's not good to cut out protein altogether.

Also how long would i need to test this out before i have some idea if it is going to work for me?

its a fine thing to speak about tn, the pain,the meds,,,and to seek some kind of comfort in forums,,,but far better to question doctors expertise,,,when in fact ,we, are the real experts,,when you step outside their office,you,and your pain are quickly forgoten,,the one and only thing that causes tn,,is change in brain chemistry,,after all,,,its the brain that interprets the nerve singnal,,but since all tn has the same symptoms,more or less,,,it must surly have one cause..and what does tegretol do,,,it changes brain chemistry,,,

it would be realy hard to link that steak you ate,whith the pain of tn,,,but every illness has a pattern to it,,its spotting it thats the hard part,,and if high levels of ammonia can kill you,,it certainly can irritate a nerve,,if proteine intake is the mediator of tn pain,,then the fluctuating nature of tn is explained,,its often said..tn get worse with time,,,more intense,,,the longer you have it,,,but a deminishing abillity to to filter ammonia,would be a better explination,,ammonia is one of the very few nuro toxins to cross the blood brain barrier,and according to medics,,causes dissruption of nerve signals and excitabillity...most amonnia is produce by eating meat,,when i think about my tn,,i think ,my god..who would have thought it was food,,

oh i remember the pain,,,,doc said,,thers not much we can do,,you will have it for the rest of your life,,,i thought ,not likely,,i was not ready to be a compliant ,patient,,,i thought,something has changed in my brain,,,what is it,,,it couldnt be both nerves in my face that were malfunctioning at the same time,,,thats impossible i thought,it in my brain that the problem exists,,,its food,,,now i dont take any medication,have verry very low level tn,,but,,only after cutting my protien intake,,and so cutting my amonia levels,,and it worked

in america they believe tn is diet related,,,i know it is,,,so folks ,dont be a patient, like any illnes,tn has a solution,,a cause,a cure,,for me,,ammonia answer all the questions,its a perfect fit,,if you try the low protien diet,,remember all food produces ammonia,, especialy meat,,i eat only about 80 grams of proteine daily,in two meals,,it must be remembered that it may take a couple of weeks for damaged nerves to heal again,you notice a decline in symptoms,by the day,,,now i can talk as much as i like,,ha ha,,no pain,,no meds,,i see absolutely no reason why this should not work for others,,

this is not a faddy diet,,,i am removing a nuro toxin from my brain,,,just think,,do you know how well your liver and kidneys are filtering ammonia,,you might be supersensitive to even the smallest amounts,,hope all this helps someone out there,,its just gota be better than a life time on medication,,and after all these words,,tn has a cause,and a cure

our livers and kidneys filter all toxins from our bodies,,,from food,,,body takes nitrigen and converts it to amonia,then passes it to our kidneys,,to .pee out,,,but,,if kidneys and or liver arnt working very well,,we retain the ammonia in our blood stream,,,which is nuro toxin,,it then crosses the blood brain barrier,and acumilates in our brain,,and can and does iritate nerve function,,and signaling,,the quantities of of ammonia will dictate the ammount of pain we have,and its duration,and this will be goverend by how much proteine we have eaten,,

but as i have said,,a person can be supersensitive to even the smallest amounts of ammonia,,because it so toxic to the brain,and would not show in blood tests,,some in america think its a fatty acid,,it is not,,, to have a nerve irritating agent,in differing quantities,which is dictated by how much proteine we have eaten,,explains the fluctiating symtoms and intesity,,there is only one kind of tn,,,thats tn,,,,net full of research on amonia,,,and how it disrups nerve signaling,and excites the nerves,,espicialy,the trimenal nerve in rats,,,why not us,,

as to surgery,,,,,,and blood vessels,,it may be ammonia gets trapped at that junction,,concentrated....as i have said,,in bilatteral tn,,,its absolutely imposible,to have two blood vessels trapping a nerve at the same time ,,,people getting double mvd,,are truley wasting their time,,the brain is the problem,not the nerve,,we have had these nerves in our face since we were born,,and all of a sudden,they dont work properly now,,,so what has changed,,,nerve is unchanged,brain unchanged,,,brain chemistry,,,,thats changed,,,you cant see ammonia in a mri scan,,,,this is the question i pose,,,when i can induce tn,and then elliminate it,,,at will,, i am doing somthing few others have ever done,,,and who would ever have thought food was the cause of tn,,,not in a million years,,,not any doctor,,,i got lucky,,,,i got it right,,,after years of tn,and its pain,,the thought of taking those meds again,that made me so sick,,

tn has only one cause,,,i respect others opinions,,,as to doctors,,,,its not them that suffer the pain,,they know no more than we do,,,tegretol allters brain chemistry,,,so does amonia,,,if you drink alchohol.it changes brain chemistry,,you feel less pain,,as your liver filters it out,nerve fuction returns to normal,,change brain chemistry for any reason,,and you nerve function changes,,tn is only a change in brain chemistry,thats all,,,because our brain and nerves do not change,,the liver and kidneys control brain chemistry,,,,if they dont work 100 percent,,,your in trouble,nuro toxins quickly build up,,in your blood stream,and enter your brain,if your bodies filter system is compromised in any way,,,it can cause tn,,,as brain chemistry changes,there is no great mystery to tn,,,brain chemistry is the cause,,its why little shows up in scans,,and is why tegretol works

my rule of thumb with doctors,is,,,dont rely on them,trust your own judgment,my doc said,,you will have this for the rest of your life,,,well,,she was wrong,,and remember,docs dont know what causes tn,,so why should anyone listen to them,,,i didnt,,,i searched,and found the answer,,no more tegretol no more pain killers,,, and common sense says,,,all these people with the same symptoms,same meds,same pain,,same cause same cure,,,there is but one kind if tn,,thats tn,, bilatteral tn,is just an exstention of of basic tn,,,its a progression from one sided tn to two sided,,thats the clue,,,that allways told me,,this tn, has nothing to do with the nerve,,,its the brain,,,,

hello flans

I am very pleased for you , that you have found relief for your TN

However, I do need to just caution you that diseases are multi-faceted, as are their treatments. Just because something has worked for you, does not mean it WILL be the answer for everyone else who suffers with TN

It is important to recognize this and yes, where sharing what has worked for you may well benefit others, you do need to also understand that it may not work for others.

repetitive
 

brain chemistry is not multi facited.,,,,,tn has one cause one cure,,,like every illness,,,we want a cure,not a palitive aproach,,,,,does a drunk person feel the same pain when sober,,,nope,,brain chemistry,,,is alltered,,,allmost every tn patient has identical symptoms,,one set of symptoms,one cure,tn is not multi faceted,,there is one kind of tn,,and only one,, we see variations bilatteral ect ect,,but the cause is the same,,the varyations are caused by how much amonia why have in our bodies,,,its the same reason for tn fluctuating nature...my rule is,,never become a compliant patient,never accept tn as incurable,,there is no mystery to tn,,,

a man,,who found a cure for a rare genetic illnes,was told by docs,,,but especialy the patients oh,,of course it cant be a cure for every one,,,but its good if it helps some,,,they were wrong,,it was the cure,,,it is not the docs you have to convince,,its the patients locked in their illness that cant see the light,, dogs with liver and kidney damage get tn,,from high ammonia levels,,documented,,,,,so do horses,,,,,so do we,,,if brain chemistry is changed,,nerve function changes,,,same with alchohol,,,,nerve function changes,,,tn is brain chemistry in its origin,,of this i have no doubt

was reading last night how amonnia make nerves hyper excitable,,and allters signaling,,and brain processing,,ther is the answer

i need to understand that it may not work for others,,,quote,,,,,how do you know,,,,have you tried it,,,,if dogs and horses can get tn from amonia,,so can we,,to sugest tn has many many cures is impossible,,,it has one,,,alchohol numbs our nerves,,because it allters brain chemistry,,allters pain sensation,,amonia increases pain perception,,it is very well known to cause excitabillity in nerves,,documented,,, if we cannot metabolise amonia.it stays in our bodies,,in our brains,,,it one of the few nuro toxins that crosses the brain blood barrier,,,

people with tn very seldom get pain on both sides at exactly the same time,,thats because one side of brain has lots of amonia like receptors,and the other side has few,,the amonnia uptake is less,,,a nerve iritant explains every thing,,thank god some doctors are now saying tn is diet related,,of course it is,,,only changed brain chemistry would explain nerves misfiring,,,i for one dont need any convincing,,my tn has allmost gone,,thats the proof,,,,,one cause one cure

Hello flans....

I would like to ask you to provide some details on how you
control your ammonia levels. Some links to share, that we all can read?

The body controls ammonia pretty well, as it is very toxic when out of control. In patients with liver damage or failure, ammonia levels do rise and affect the brain. Is that what you had?

Have you had blood tests to show changes in blood pH?

I am a regular on the Peripheral Neuropathy forum, and we do
discuss acidic conditions that may contribute to chronic pain.
We've some links there you might like to read. Some of the PNers who post here have chronic burning, for example. Not unlike TN. One of test remedies that work for me and some others, is TriSalts or original formula AlkaSeltzer. This blocks histamine receptors briefly and relieves burning pain for some.

hi,,,,,you dont need to have a damaged liver to have high amonia levels,,,it all depends on how well we filter amonia,,each person has diff abillity,,,we cant all procsses the same amount of protein,,yet we eat a lot of proteine,,amonia circulating in the blood stream has a high afinnity for irritating nerves,but only acumilates in the brain,,where it can disrupt nerve signaling,documented,,,with alkaselzer,you may be changing brain chemistry,and the brains perception of pain,,just as tegretol changes brain chemistry,and nerve excitabillity,,,,

ive got stable liver damage,,so have done lots of research,,there is no specific link to reffer to,,information from many links,,,there may be no damage to a nerve,,to have pain,,just as alchohol numbs our nerves amonia does the opposite,they both change brain chemistry,,now imagine that you cant filter the allchohol from your body,,,your perception of pain would be for ever change,,but thers nothing wrong with your nerves,so taking meds.is a waste of time,,tn is like that,,,its not in the nerves ,,its the brain,,

flans, I see that you didn't answer mrsD when she asked for links to literature to back up your claims.

It's easy to post all these statements but I personally would like to see evidence of proof, and I'm sure that other people would too.

What literature do you have to substantiate your claims? I've tried to find evidence that ammonia causes TN, and so far have been unable to find one article that says so.

If what you are saying is true, then please posts links to all the articles that prove your theory, so we can all read them. Thank you.

Excess ammonia may build up in some people with liver disease,
and you, flans, do admit to that. What happens then is that those patients develop encephalopathy as a result.

Using Lactulose liquid can help prevent this.

Here is a link explaining ammonia testing, and in this link are conditions that may raise ammonia in some people:

http://www.nlm.nih.gov/medlineplus/e...cle/003506.htm

So that most commonly in medicine elevated ammonia levels can be due to liver damage. Doctors monitor their patients for this with blood work. A yearly exam for example will include blood chemistry tests, including renal and liver functions. And because there is always ammonium ions present in the entire body, it is not feasible to remove it all. It would have global effects and not just affect one nerve path.

Flans, your posts do not include your medical history and details. They do not include details of your own interventions to reduce your ammonia levels. Did you have medical testing to reveal elevated ammonia? Did you go on a special diet, or take lactulose to help?

Dietary manipulation in TN patients is not new. This link is to a gentleman who believes saturated fat is the culprit for pain attacks:

http://www.franksherwood.com/
His dietary restrictions are spelled out in that link.

Other medical conditions may be linked to diet:
gluten intolerance ( a known causer of neuropathies from wheat gluten)

food allergies like dairy

allergies to various food groups... lily family (onions etc), nightshades, corn and soy are the most common

Other conditions of the nervous system like MS has some dietary suggestions that some people use..called the SWANK diet. This is also
a modified fat diet and works for SOME.

All of us are different and unique. We have different genes that may or may not make us be prone to certain afflictions. Metabolically there are people who cannot utilize B12 or folate in supplements. They have MTHFR mutation. 10% of humans (and some suggest up to 30% fail to methylate properly). We all have slight anatomical variances from the norm. I, for example, have twisted internal organs, called malrotation.
So one thing or intervention just cannot affect all people. We are all so different in some ways from others. There are many other examples.

The beauty of forums like this is to share information, provide links, and support each other in our quest.

canadian nurologist..said,,,,,,i beleive its ammonia,,,that causes tn,,,,and the quantities can be so low we cant measure it,,each individual can process only so much ammonia,,some may be supersensitive to it,,,but what we do know is,,,ammonia is a nerve exciter,,the one and only way tn can happen is a change in brain chemistry,,it is not the nerves themselfs,,it certainly is not a blood vessel,,,as billateral demostrates most clearly,,,there is no other naturaly occurring nerve exciter produced by our bodies,,,,only amonnia can do this,,,,as it does to horses and dogs,,,if we ignore tn in other species,we might as well put a blind fold on,and keep taking the meds,,,,,

the atkins diet made many sick,,,to much proteine,,,,some got weird face pains,that went away when they returned to normal diet,,,tn,,,,,lots of docs say,,nerves is hyper excited,,well,,,,somthing is responsoble for that,,,and it can,,only,,,,be achange in brain chemisrtry,,,,there is only one nerve irritant thats able to do this,,,amonia,and its naturaly occurring,,,we take tegretol to,,calm,, the nerves down,,that is why it works,,,better to take the iritant away,,,which i did,,,,no more meds,,,no pain,,best argument another can make,is,, try diet and we shall see,,,this is not a faddy diet,,its goal is reduction of proteine load,,,,i eat 80grams of proteine a day,,,,its easy to just count the protene on the packet,,

meat has the most protein and amonia,,,i avoid almost all of it,,i eat mainly canned cooked meat,,because ot poor quality meat,,just count the proteine,,,and above all,,,eat same qnantities of food a day,,the goal is to produce less amonia,may be dif for each individual,,,,this diet is meant to change brain chemistry,,,to be realy honest,,,,i find the cause of tn,,a bit obvious,,you can not miss it,,,,i drink alchohol,,brain chemistry changes,as it does when we eat,,,you can read on the net,,over and over again,that ammonia excites nerves,, in dogs horses humans,,we have absolute beleif in blood tests,,yet,,liver test can be normal,,,and yet the liver or kidneys are only working 80percent,,biopsy is gold standard for liver and kidneys,,and even then,,it may be the indevidual canot cope with any amount of amonia,,and no ones filter system is perfect,,

you do not need to have any illness to have amonia in your system,,,,,that blood test dont detect,,,amonia is a nerve exciter and disrupts nerve signaling,,if i were a detective,,,,dont think i would be looking for any other suspect,,its the one and only nuro toxin to do this,,i cut the proteine levels very low,,,after 8years wth tn,,,its gone,,

ok,,,heres the clues,,,tn thought of illnes of the old,,tn mostly on right side of face,,but spreads to left,,,get worse as time passes,,,tn has fluctuating nature,,,it responds to tegretol,,,,,which changes brain chemistry,,,,,,here are a list of suspects.....blood vessel compression,,viruses,,,blunt trauma,,dentistry,,,,old age,,,,or,,,,,,,ammonia,,,of course our filter systems are less efficient as we age,,,hence why tn get worse with time,,tn fluctuations are due to ammonia level,,and our abillity to process it,,