This is a good discussion,at this point I don’t have a clue about the craziness of tn.After 25 years of tn1 and tn2 I have had a total of 18 days of I guess you would call it that.The 1st time was 3 days of absolutely no tn pain of any kind that was in may of 2005 the last time I really thought all the pain was gone for good after 7 days again NO pain of any kind,that was in june 2007,then 8 days later BOOM! like it never was gone. Now over the last 3 1/2 years it has become much worse.Like so many of you I am so sick of side effects from meds. and then have them not work at all.I finally have found meds. that work the best for me in all these years, with the least side effects.The thing that amazes me the most is a cream that was offered to me to try.A CREAM! How in the worLld, was my thought that a cream could help this kind of pain. GUESS WHAT? FOR ME GALLIXA HAS BEEN THE ANSWER TO MY PRAYERS!! I do know that there are others here that use it or have tried it. I also have started the B-12 shots again. I have read where it can help heal the mylin shealth, ( sorry spelling not good right now) I have tried the B-12 back yeasrs ago for about three years,didn’t seem to make any difference,seeing meds have changed and allthe help the cream has been with what I said I didn’t know howto live with, The burning boring thobbing that was so constant the cream, GALLIXA has took so much of that away. My tmj is prettin near gone.Been off pain pills almost 7months,after almost 15 years. The cream won’t stop working,and I sure can tell it keeps getting better.With all the rain we have had by rights I would of use to be what we call around here flippin and floppin because the pain would of been so bad.I Tonight is not a good night but,I have no problem funtioning,where before the pain was just to constant,and to much,I really didn’t think I could keep dealing with that degree of pain.I HAD LOST HOPE! I NOW HAVE MY HOPE BACK! THANKS TO GALLIXA! I have pretty much run out of options, so I pray that this continues to calm the nerve down and each one of you find your best treatment possible to tame this wild beast in each one of you still desperately searching for at least something to make tn doable. Dawn
You're welcome to the line, Janet. I also sometimes use a photo of a young woman with a megaphone saying emphatically "The pain is NOT all in my head!"
Janet McGee said:
Hello again, Chancery,
Now I see that you're in the UK. I just wanted to make sure that you saw Red's post about the UK branch.
I hope that the researchers have let you know that you're not making up any of your depression or anxiety. They are not just figments of your imagination but genuine neurological results of pain. Maybe there's a sweet-talking way of getting a research article or two into your doctor's hands.
Red, I loved your line about the statute of limitations on medical procedures. I'm going to have to steal it sometime. ;)
Janet
Wonderful Dawn, hope it continues to improve for you...
The B12 I took was in tablet form - under the tongue 1000mcg a day
but it did take a couple of years to really know it was making a difference.
Blood test from local Dr showed my levels were not too high, so still taking it, but not every day now.
Agree, that everyone is so different, that we each have to find what works for us.
xx GP
Love the idea of the young woman and her megaphone. Candace Pert wrote a book called, "Molecules of Emotion," in which she laid out her (research-based) theory that the mind-emotion-body connection is mediated through neurotransmitters which also function in determining mood, while also serving as antibodies. Combine the neurotransmitter element with the cross-talk between closely-spaced nerves and you paint a picture for pain that cannot remain in your head. So many neuralgians have complained of somatic, muscular pain accompanying their TN pain. It's mysterious, and yet understandable.
Richard A. "Red" Lawhern said:
You're welcome to the line, Janet. I also sometimes use a photo of a young woman with a megaphone saying emphatically "The pain is NOT all in my head!"
Janet McGee said:Hello again, Chancery,
Now I see that you're in the UK. I just wanted to make sure that you saw Red's post about the UK branch.
I hope that the researchers have let you know that you're not making up any of your depression or anxiety. They are not just figments of your imagination but genuine neurological results of pain. Maybe there's a sweet-talking way of getting a research article or two into your doctor's hands.
Red, I loved your line about the statute of limitations on medical procedures. I'm going to have to steal it sometime. ;)
Janet
That's very interesting, Red. So you are essentially saying the opposite of Janet - that TN 2 is really considered the precursor to type 1? I find it interesting about the MS plaques, but that does seem to suggest at least a similar end mechanism, if not a causative one, i.e. the penetrating lesions and compression indentations doing the same end damage. But, of course, that is less than useless for explaining why only some compressions are doing the damage in the first place.
I know there is a lot of disagreement about the relationship of TN1 and TN2 and I have to say from personal experience that while I share some common denominators of medication and pain, there is often actually far more that is disparate. So much so that I often feel completely divorced from TN2 sufferers as they seem to be experiencing a different disease entirely with no similarities of sensation and no common ground of drug control. Again, speaking personally, I sometimes find this alienating and it occasionally feels as if you are part of an even smaller number of sufferers because you are not really sharing common ground.
Richard A. "Red" Lawhern said:
FYI all: there is a substantial branch of TNA in the UK, centered primarily in the area around London, I believe. The TN Association of the UK also has a website at http://www.tna.org.uk/. "Living With TN" has about 400+ members in the UK, some of whom also belong to their more local TN organization.
In MS patients, when TN occurs it is sometimes called "symptomatic" because it is believed that the mechanisms for MS pain generation in the trigeminal nerve are somewhat different from those that operate in classic TN. Plaques on the nerve may introduce discrete penetrating lesions that aren't quite the same thing as the indentations of the nerve which result from compression and stimulation by a blood vessel.
Otherwise, I'd have to say that the current trend in thinking is that classical symptoms of TN (volleys of electric shock stabs) are less likely to progress into the less typical symptoms of trigeminal neuropathic pain (throbbing, burning 24-7 pain at somewhat lower intensity), if pain control is gained early. At one time, it was common to speak of atypical TN as "pre-Trigeminal Neuralgia" because a lot of patients reported that form of pain as the first pain presentation. These days, the trends are also away from the distinctions TN-1 and TN-2, because doctors have always found the causes of atypical TN to be obscure when there is no obvious or discrete source of physical injury to the nerve in the patient's history.
Regards, Red
My experience over 8 years of off and on type 1 TN were what caused the flair up of TN. What caused the remissions was stopping the compression that I felt caused the flair up. I stopped doing anything and that seemed, along with meds, to allow remissions. The causes of flair ups for me were putting my head in positions that allowed compression of the nerve like scrapping pop-corn ceiling, tapping off and painting crown molding along the ceiling and wall, and working 1000 piece puzzles on a table by looking down for hours and hours.
Hi again, Janet. Yes, I'm in the UK - Scotland, so I'm too far away from the London chapter that Red recommended. I have considered joining the UK association but at the time I was very short of money because I couldn't work and was receiving no benefits (disability in the US?). I also wasn't long diagnosed and found the forums very depressing because it was everyone talking about their terrible pain and how much worse it would get! I should maybe reconsider it.
I have thought of buying Striking Back (unfortunately they are no longer giving that book free on the Association site!), but it's expensive here and I wasn't sure if it would offer any more info than what you can get freely on the internet. Would you recommend it as adding anything to the generally available material on the internet?
I have actually been on Toni's website, but only to sign the petition. I will now go and check it out and see what goodies it has to offer - thanks for that.
The Nano technology and research sounds fascinating. I sincerely hope they can make that both viable and affordable (somehow can't see that being cheap!), and I was most surprised to see that they only thought there was a 5% genetic link. I did a VERY impromptu poll on here a while back, asking people if they had any relatives with TN, because I thought that it had a very weak genetic link, but I was shocked to discover it was about 50%, so I had to eat my words! I'm wondering now how that disparity of 5% to 50% has arisen though. Maybe they haven't seen my poll!
I am not at all surprised by the depression issues. When I was first diagnosed, and worse, before I was diagnosed, my depression was crippling. For months I was suicidal. I felt like I had been given a death sentence and the side effects from medication were so fierce I didn't see the point of going on living: I was a stupefied zombie, sitting on a sofa, incapable of forming a whole sentence. Getting B12 injections and getting greatly improved pain control was a real life saver for me. Strangely enough, when we were trying different meds, without success, I did think of Amitryptiline and always felt it would be a good one to try. I think that was intuition!
Give my love to your cat - poor thing - and hope to hear from you soon.
Janet McGee said:
Hi Chancery,
What a beautiful name! First of all, may I ask where you live?
Secondly, if you have not done so, I'll bet you'd like to visit www.tnnme.com. It's an organization headquartered in Boston and headed by a power-house of a woman named Toni Saunders. There's a petition on the website addressed to the World Health Organization, asking that TN be including on the UN's Health Topics list, in order to attract more funding for research. If you have not yet joined, you can get a membership in the National Facial Pain Association (TNA) for $35. When I renewed my membership, they sent me a free updated copy of Striking Back! A Layman's Guide to Understanding and Treating What is Often Called the Worlds's Worst Pain. There are a number of Facebook support groups; one now has over 6,000 members. It's a wonderful source of inspiration and information. I'll have to get back to you with the exact name of the group. The International Trigeminal Neuralgia Awareness Fighters group is an affiliate of tnnme.com, and they put up occasional YouTube videos and sponsor walks to raise money and awareness for TN. The National Facial Pain Research Foundation is a non-profit organization that sponsors TN research in hopes of finding a cure. They've got research going in both Florida and California. One of the big undertakings is research into the genetic foundations of TN. I had not thought that much would come out of this avenue, as it is currently thought that only 5% of TN cases have a genetic basis. But, they've already published findings that have made me eat my words. The other main avenue of research is the nano-pharmaceuticals project, which hopes to trick the appropriate glial cells into applying new myelin sheathing to damaged nerves. They've already found out some amazing stuff about how, when you're in pain, signals are sent to the glial cells, which decrease production of dopamine (one of the "feel-good" neurotransmitters). When dopamine levels drop in response to pain, the sufferer feels anxious and depressed. While looking for a cure, they've found out something critical about the nature of pain that anyone might experience, and they've explained why it is that we get so moody when we're in pain. It also explains why so many TN patients benefit from a course of amitriptyline (Effexor), or another anti-depressant medication. Effexor is one of a class of drugs that affects both serotonin re-uptake and dopamine re-uptake. If it's OK with you, I've got to tend to my daughter's cat, as he tried to get his bladder blocked today. I'll be back to address more questions, and also give you the names of a couple of Facebook support groups (especially the one that shocked me by turning from a few hundred to over 6,000).
Talk to you soon,
Janet
I think timing with B12 is very important, GP, and the dose you take and how it is delivered. When people have neurological damage from B12 deficiency, they have to have loading doses to undo the damage. If you don't get these often enough or quickly enough, the damage becomes permanent. I think the same mechanism may be at play in TN. I had not long been diagnosed (relatively speaking!) when I managed to get my GP to agree to B12 injections, plus I got three weeks of alternate day loading doses. I think that may be why they were so effective in pain control/bringing on a remission for me. I think people who have had the condition for years, or who only take a low dose tablet, are doing too little too late, hence the poor results people often get.
GP said:
Wonderful Dawn, hope it continues to improve for you...The B12 I took was in tablet form - under the tongue 1000mcg a day
but it did take a couple of years to really know it was making a difference.
Blood test from local Dr showed my levels were not too high, so still taking it, but not every day now.
Agree, that everyone is so different, that we each have to find what works for us.
xx GP
I have often though there might be something to this, Prosper. I've seen people say they've had good results with chiropractors and neck/shoulder adjustments. So I think there could be nerve compressions at play. But I suspect that it maybe doesn't apply to everyone - unfortuntely.
Prosper said:
My experience over 8 years of off and on type 1 TN were what caused the flair up of TN. What caused the remissions was stopping the compression that I felt caused the flair up. I stopped doing anything and that seemed, along with meds, to allow remissions. The causes of flair ups for me were putting my head in positions that allowed compression of the nerve like scrapping pop-corn ceiling, tapping off and painting crown molding along the ceiling and wall, and working 1000 piece puzzles on a table by looking down for hours and hours.
Woman with the electric teeth said:
That's very interesting, Red. So you are essentially saying the opposite of Janet - that TN 2 is really considered the precursor to type 1? I find it interesting about the MS plaques, but that does seem to suggest at least a similar end mechanism, if not a causative one, i.e. the penetrating lesions and compression indentations doing the same end damage. But, of course, that is less than useless for explaining why only some compressions are doing the damage in the first place.
I know there is a lot of disagreement about the relationship of TN1 and TN2 and I have to say from personal experience that while I share some common denominators of medication and pain, there is often actually far more that is disparate. So much so that I often feel completely divorced from TN2 sufferers as they seem to be experiencing a different disease entirely with no similarities of sensation and no common ground of drug control. Again, speaking personally, I sometimes find this alienating and it occasionally feels as if you are part of an even smaller number of sufferers because you are not really sharing common ground.
================Actually, I've seen the progression of TN work in both directions. Some patients present initially with fully developed electric shock spikes of pain, and later develop aching and burning pain (sometimes on the opposite side). Other patients present with the aching and burning first and develop the shocks later. Some will present with only one of these two patterns, and it will remain basically stable in overall character for years. Overlaid on all of this is that a portion of patients present with precursor symptoms of parasthesia (tingling, numbness) that don't track directly to EITHER overall type of face pain, but seem to signal a developing neuropathy. I don't think we're dealing with a single or discrete process of pain development, so much as several different mechanisms combining and interacting.
Small wonder that some folks say the pain makes them crazy with uncertainty over what's going on and what will emerge next. I wish I could make the world more predictable for people who are struggling. But I'm all out of prophetic predictions.
Regards all,
Red
Striking Back is well organized and inclusive, Electric. We've covered a lot of the territory here in our Face Pain Info articles. But Striking Back is definitive. Striking Back retails through Amazon at $22.00 US plus domestic postage. I would expect it to be locally distributed in the UK for about the same price.
Regards, Red
There's also a paperback edition (looks like the first edition is still being sold) at lower price. See http://www.amazon.com/Striking-Back-Trigeminal-Neuralgia-Unabridged/dp/0967239303/ref=sr_1_4?ie=UTF8&qid=1436900191&sr=8-4&keywords=Striking+Back
Yes, I think the pain is the most irrelevant part of TN, oddly, and no, I haven't gone bonkers! I think that the pain is almost a red herring, because whatever is 'destroying' the nerve is not really concerned with pain and it's just an accidental side effect. I think that's why it's so variable in people, because no two people will have the same damage in the same place, in the same way, with the same effects. It's not like breaking your tibia. No two people seem to experience it alike.
When I was first diagnosed, and had tremendous doubt about whether I really had TN or if it was a tooth problem, I seemed to spend every night on here, quizzing people endlessly about what their pain was like, and I found it very depressing that no-one's seemed to be quite like mine. I felt sure this meant it wasn't really TN and I was making a big mistake and I should just go ahead and root canal my tooth. It took many, many months of various symptoms, and me constantly reassuring myself that tooth decay couldn't make my face hurt in the shower, or going into a shop, to even make a slight bit of progress in believing it was authentic.
Until then I had no grasp of just how variable a response like this could be in people who ostensibly had the same disease. So yes, I do think this huge range of pain experience gives the impression that the disease is two discrete conditions (or more!) when it might not be anything of the kind. That's why I was so interested in Janet's theory of TN1 becoming TN2.
All that said, there is actually a small comfort to the lack of predictability: for every bad fate that may lay in store for you, there may be an equally lenient one. No-one, not even the best neurologist in the world, can predictably say what way it is going to go for you, or when, so you can always choose to hope for the best!
Richard A. "Red" Lawhern said:
Woman with the electric teeth said:That's very interesting, Red. So you are essentially saying the opposite of Janet - that TN 2 is really considered the precursor to type 1? I find it interesting about the MS plaques, but that does seem to suggest at least a similar end mechanism, if not a causative one, i.e. the penetrating lesions and compression indentations doing the same end damage. But, of course, that is less than useless for explaining why only some compressions are doing the damage in the first place.
I know there is a lot of disagreement about the relationship of TN1 and TN2 and I have to say from personal experience that while I share some common denominators of medication and pain, there is often actually far more that is disparate. So much so that I often feel completely divorced from TN2 sufferers as they seem to be experiencing a different disease entirely with no similarities of sensation and no common ground of drug control. Again, speaking personally, I sometimes find this alienating and it occasionally feels as if you are part of an even smaller number of sufferers because you are not really sharing common ground.
================Actually, I've seen the progression of TN work in both directions. Some patients present initially with fully developed electric shock spikes of pain, and later develop aching and burning pain (sometimes on the opposite side). Other patients present with the aching and burning first and develop the shocks later. Some will present with only one of these two patterns, and it will remain basically stable in overall character for years. Overlaid on all of this is that a portion of patients present with precursor symptoms of parasthesia (tingling, numbness) that don't track directly to EITHER overall type of face pain, but seem to signal a developing neuropathy. I don't think we're dealing with a single or discrete process of pain development, so much as several different mechanisms combining and interacting.
Small wonder that some folks say the pain makes them crazy with uncertainty over what's going on and what will emerge next. I wish I could make the world more predictable for people who are struggling. But I'm all out of prophetic predictions.
Regards all,
Red
Ah, thank you, Red. Unfortunately US books are marked up here, so the cheapest one available here is £18 (around $36 to you). But that's a second-hand copy of the first edition. I didn't know if that one was worth buying - what do you think? Should I hold out for the new edition, or does the old one have much the same info? If it's just updated addresses or a list of current US neurologists, or some such, that has been added, then the old edition is fine, but if it is actually updated medical info, then that's more of a serious consideration. Any ideas how they differ?
Richard A. "Red" Lawhern said:
There's also a paperback edition (looks like the first edition is still being sold) at lower price. See http://www.amazon.com/Striking-Back-Trigeminal-Neuralgia-Unabridged...
I believe the second edition contains much the same information, with a few updates for terminology and removal of references that are no longer available in literature or on the Web.
Regards, Red
Chancery of the Electric Teeth, I now have both copies of the Striking Back. While the new version is newer, there seem to be few differences between the two. But, the information that it provides is quite comprehensive. It's been called the Bible of TN, with good reason. I read a lot in a variety of science disciplines, and I am always impressed when an author pulls off the high-wire feat of writing about highly specialized topics in a way that is understandable for the general public. Weigel and Casey do just that. Some of the most useful information in the book comes in the forms of graphs, charts and tables. The chapters you might find most informative are, "Just What Is TN Anyway?", "What's Causing This Terrible Pain?", and "The Dental Connection." There are also chapters on different treatment approaches, including those outside of mainstream medicine.
Red, I don't want to break the rule about recommending any particular brands. Is it Okay to post the names of other booksellers that might be able to offer better prices?
That's great, Red, thanks. I might have a bash at it then. X
Richard A. "Red" Lawhern said:
I believe the second edition contains much the same information, with a few updates for terminology and removal of references that are no longer available in literature or on the Web.
Regards, Red
That's great, Janet, thanks. If Red doesn't want you posting on here, can you just send me the names of other sellers by private message? I shall love you forever, because it is mighty pricey on this side of the pond. I think buying one of the second-hand ones that Red recommended would even be cheaper than buying it here, so any sources you can think of to get a cheaper copy, I'd be very grateful. X
Janet McGee said:
Chancery of the Electric Teeth, I now have both copies of the Striking Back. While the new version is newer, there seem to be few differences between the two. But, the information that it provides is quite comprehensive. It's been called the Bible of TN, with good reason. I read a lot in a variety of science disciplines, and I am always impressed when an author pulls off the high-wire feat of writing about highly specialized topics in a way that is understandable for the general public. Weigel and Casey do just that. Some of the most useful information in the book comes in the forms of graphs, charts and tables. The chapters you might find most informative are, "Just What Is TN Anyway?", "What's Causing This Terrible Pain?", and "The Dental Connection." There are also chapters on different treatment approaches, including those outside of mainstream medicine.
Red, I don't want to break the rule about recommending any particular brands. Is it Okay to post the names of other booksellers that might be able to offer better prices?
Chancery-
I don’t know if it’s helpful, but Amazon has Striking Back offered through some of their sellers for about £10 in the UK. Perhaps this link will help.
http://www.amazon.co.uk/gp/offer-listing/096723932X/ref=dp_olp_all_mbc?ie=UTF8&condition=all
Thanks, Mrl - looks like someone beat me to it. Curses!
mrl said:
Chancery-
I don't know if it's helpful, but Amazon has Striking Back offered through some of their sellers for about £10 in the UK. Perhaps this link will help.
http://www.amazon.co.uk/gp/offer-listing/096723932X/ref=dp_olp_all_...