Return of pain

Symptoms & Treatments Surgery
81

I went through all of the above including Gabapentin withdrawal..

I always recommend the following and I do not understand why my information is not understood.

Contact the nearest hospital center that has Gamma Knife and known results for TN.

There are always neurologists who truly understand the TN problem and whether or not your particular problem

can be addressed by GN. It worked for me. A reduction from 800mg Tegretol and 600 Gabapentin daily to 200 mg

of Tegretol as a prophylaxis. This more than 6 years. Sometimes there is a low level background pain and I have had

one flair up. I just adjusted my Tegretol for a few days and weaned back to 200mg. after a few days.

Marv

82

If you go to fpa-support.org, you will find a link on the homepage that will take you to gamma knife specialists in your state. I should point out, in all fairness, that TNA does not necessarily endorse any particular surgeon over another. What they list, without judgment, are specialists in each state. (If you'd like to take advantage of the best of the best, you cannot go wrong by looking at the speakers lists for national or regional conferences.)

Fruitful hunting,

Janet

83

True, but in the case of collagen disorders TN could be caused by other manifestations other than vascular to which remission might apply, such as arthritis or in the case of Ehlers-Danlos Syndrome occipitoatlantoaxial hypermobility of the neck.



ModSupport said:

That doesn't eliminate collagen disorders...... Anybody have varicose veins? or veins "showing" Its the same thing........ Sometimes age related sometimes not.

84

I have to admit that I am thoroughly confused but jumped in because I also haveTN2. In my case, I had "flare ups" of horrific pain that only lasted 6-8 weeks for years and then it became a constant part of my life. There were times when I did not have an attack for years. It took me 30 years to be diagnosed and it has essentially destroyed my life and it is only getting worse.

I don't know if it matters to this conversation, but we also have family history of auto-immune diseases. I have been diagnosed with Connective Tissue Disease and am waiting to get in for a second opinion. I have one daughter with MS and one daughter with Lupus, as well as a niece with Lupus.

Cathy in MD

85

Hello Cathy,

This discussion has become far-reaching and a bit confusing, especially if you're just joining in now. Everything that I've read about TN remissions is that their length of time depends entirely on the individual; you could go months or even years before flare-ups begin again. I'm so sorry that it took so long for you to get a diagnosis and that TN has claimed so much of your life. It is, I'm afraid, a progressive disorder.

At the TNA Conference in New York two weeks ago, one of the speakers did say that people who belong to families that have auto-immune disorders may be at higher risk for developing TN. Even a family history of irritable bowel syndrome can be a predisposing factor.

I do hope that you will be able to find a treatment to help your TN.

Wishing all the best,

Janet

86

Now that last one really is interesting, Aiculsamoth, isn't it? If MS patients have demyelination occurring everywhere, as it were, and their TN is not responding to MVD then that really does suggest a bigger mechanism is afoot, doesn't it? But of course that could just be for them - once again, correlation is not causation (curse it)! But that's a great collection of reports you've assembled there, showing that, indeed, the compression idea is 'flawed', for want of a better word, because it definitely is not the whole picture. There's too many holes and not enough concrete data to prove that it's definitely compressions that are doing the dirty deed unaided.

I always find it funny that when you take a new theory to your doc (and I've taken many), they are generally scathing and very quick to say "There's no proof", but when you look at medicine and medical knowledge there's more holes in it than a Swiss cheese. Ever since I fell ill with my very first illness (gallstones), I've thought doctors have a cheek being scathing or condescending to anyone - half their stuff is guesswork and the other half entirely made up on half-a$$ed suppositions!

Thanks very much for the links. I'm going to go have a good read. And can I just say it's great to talk to someone who is as interested in research and the causes of TN as I am. It makes a nice change from focussing on pain and drugs!

aiculsamoth said:

Woman with the electric teeth, interesting " It would be ironic, but not surprising, if the compressions, per se, had little to do with TN and were merely red herrings. It would also account for the variable responses of people to MVD ops and why many healthy corpses (an oxymoron!) have compressions but no history of TN." Sounds like the possible basis for a John Grisham novel.
After some research;
Jennetta states- "The vascular compression theory of TN proposes that compression of or proximal to the central-peripheral myelin transitional of the trigeminal nerve by a vessel is the central cause of TN", yet he states compression occurs along the whole of the nerve root as a cause, would appear the neuros are as confused as I am.
Peker S and co conclude " If trigeminal neuralgia is caused exclusively by vascular compression of the central myelin, the problem vessel would always have to be located in this region. However, it is well known that pain from trigeminal neuralgia can resolve after vascular decompression at more distal sites. This suggests that the effects of surgical decompression are caused by another mechanism." http://www.ncbi.nlm.nih.gov/pubmed/16883175
Ariai and others.. "Facial pain outcomes after MVD in patients with suspected MS-related TN are poor compared with outcomes for patients with idiopathic TN. This study provides further support that many patients with MS-related TN have pain that is centrally mediated, reducing the effectiveness of procedures performed on the trigeminal root, ganglion, or divisions." http://www.ncbi.nlm.nih.gov/pubmed/24056218

87

Me again - just a note to say I'm keeping your ;ast reply and its links in my TN file. Invaluable information. Thanks again.

aiculsamoth said:

Woman with the electric teeth, interesting " It would be ironic, but not surprising, if the compressions, per se, had little to do with TN and were merely red herrings. It would also account for the variable responses of people to MVD ops and why many healthy corpses (an oxymoron!) have compressions but no history of TN." Sounds like the possible basis for a John Grisham novel.
After some research;
Jennetta states- "The vascular compression theory of TN proposes that compression of or proximal to the central-peripheral myelin transitional of the trigeminal nerve by a vessel is the central cause of TN", yet he states compression occurs along the whole of the nerve root as a cause, would appear the neuros are as confused as I am.
Peker S and co conclude " If trigeminal neuralgia is caused exclusively by vascular compression of the central myelin, the problem vessel would always have to be located in this region. However, it is well known that pain from trigeminal neuralgia can resolve after vascular decompression at more distal sites. This suggests that the effects of surgical decompression are caused by another mechanism." http://www.ncbi.nlm.nih.gov/pubmed/16883175
Ariai and others.. "Facial pain outcomes after MVD in patients with suspected MS-related TN are poor compared with outcomes for patients with idiopathic TN. This study provides further support that many patients with MS-related TN have pain that is centrally mediated, reducing the effectiveness of procedures performed on the trigeminal root, ganglion, or divisions." http://www.ncbi.nlm.nih.gov/pubmed/24056218

88

I think auto-immune could be an issue in TN, Cathy, yes, so I think it is a very relevant thing to raise. Way back, I did another impromptu poll on here (I find it's the only way to get information sometimes) on how many people here suffered from hypothyroidism, and it was surprisingly high.

The reason I asked was because I had been diagnosed with it myself (possibly Carbamazepine induced - but the jury's still out on that one) and I had come across the highest amount of TN sufferers I've ever met on the Thyroid Forum I use. I literally kept falling over people with the condition. So I came over here and asked if the reverse was true - 'any TN sufferers have hypothyroidism?'- and lo and behold, quite a few sufferers.

Of course, this could simply be because thyroid disorders are so common there will be more TN sufferers among them as a matter of sheer statistics. But I think there could be an autoimmune issue (or even a gluten/food sensitivity issue, which is a whole other discussion!) causing neurological damage and resulting in TN in some genetically predisposed people.

Cathy in MD said:

I have to admit that I am thoroughly confused but jumped in because I also haveTN2. In my case, I had "flare ups" of horrific pain that only lasted 6-8 weeks for years and then it became a constant part of my life. There were times when I did not have an attack for years. It took me 30 years to be diagnosed and it has essentially destroyed my life and it is only getting worse.

I don't know if it matters to this conversation, but we also have family history of auto-immune diseases. I have been diagnosed with Connective Tissue Disease and am waiting to get in for a second opinion. I have one daughter with MS and one daughter with Lupus, as well as a niece with Lupus.

Cathy in MD

89

I'll just add to that, Janet, that any gastric problem that causes gut permeability has the potential to cause neurological damage from proteins making their way into the brain, where, of course, they shouldn't be. Alzheimer's is the ultimate example of the damage that misplaced proteins can have on the brain.

Janet McGee said:

Hello Cathy,

This discussion has become far-reaching and a bit confusing, especially if you're just joining in now. Everything that I've read about TN remissions is that their length of time depends entirely on the individual; you could go months or even years before flare-ups begin again. I'm so sorry that it took so long for you to get a diagnosis and that TN has claimed so much of your life. It is, I'm afraid, a progressive disorder.

At the TNA Conference in New York two weeks ago, one of the speakers did say that people who belong to families that have auto-immune disorders may be at higher risk for developing TN. Even a family history of irritable bowel syndrome can be a predisposing factor.

I do hope that you will be able to find a treatment to help your TN.

Wishing all the best,

Janet

90

There is not enough research to conclude that a digestive issue in the gut could cause TN (or Alzheimer's, either). As the genetics of auto-immune disorders and TN are more fully researched, we may have more reliable answers about the auto-immune/TN connection.

Janet

91

I didn't conclude, Janet, I said, "any gastric problem that causes gut permeability has the potential to cause neurological damage". Celiac disease is the prime example of this. Gluten proteins damage the villi of the gut, causing the Zonulin to keep the cells open in the gut wall, allowing the free passage of undigested proteins into the blood stream. In some coeliac sufferers this causes gluten ataxia (the drunken staggers). If coeliac disease goes undiagnosed, it can lead to neurological damage as severe as paralysis. It can also cause mental disorders such as schizophrenia, paranoia, dementia and even psychotic breakdown. These are all clear-cut neurological/brain damage caused by a leaky gut.

As for Alzheimer's, there is, as yet, no understanding of how the protein plaques form in the brain and do their damage, but it has been linked to conditions such as coeliac disease by leading researchers in the field, such as Alessio Fasano (who discovered Zonulin). There is a stronger link between TN and gut issues than there is to autoimmune - via vitamin B12. Gut damage can cause pernicious anaemia and/or B12 deficiency, which in turn causes neurological damage. In her book, "Could it be B12?" Sally Pacholok mentions a sufferer of TN who has B12 deficiency. I had this problem myself, so it's a very real possibility. Up until the advent of anti-convulsants, B12 was the major area of research in TN. If you search for it, you will even find papers as recent as the 2000s showing odd little studies here and there. It's a sadly neglected area of study.

Given that Alzheimer's is nowadays often listed as one of the metabolic syndrome diseases, and they are all lifestyle/diet connected, I don't think a gut connection to brain problems is at all controversial.

P.S. Autoimmune issues also often result in B12 problems (hypothyroidism, for example, causes low gut motility, which causes absorption problems), so there could be a TN connection there also.

92

I do enjoy looking at the research that is out there being from pubmed to just anatomy texts,and in doing so I wonder what is the point of all the research, alot of it with a bias towards the institutions for which the author's work. Regardless, there is so much out there on pubmed with regards to TN, that just gets ignored, by the medical profession, because??? there may be many reasons, including those that don't suit egos, if we accept so and so then for the last how long, we have to admit we have been going in the wrong direction.

Tn genetics research by the fpa association, can't help but think why bother looking for the 'new' gene, when their starting point (admittedly I don't know what it is) could indeed be directed at at looking at patient profile with regards to genes already identified in auto immune collagen connective tissue disorders. Mod support states something similar. Bowel disturbances are often involved with these complaints. How is it going to change treatment in the short term, or with the medical knowledge base at the moment?

I believe in the neck as a cause of TN, and the majority of these autoimmune collagen disorders cause issues with the neck, why not first look for HLA B27 and col( whatever gene numbers there are several) genes in the TN patient I believe it is relatively inexpensive.

Not very scientific, I know, but logging on to psoariatic arthritis (a collagen disorder) at Ben's friend the question 'anyone suffer with TN?' was answered in the affirmative by four people. So what you may say? This is a site with only circa 3000 members, and those responding are active members. 4 in 3000, is a lot higher than the incidence within the general population, and probably the tip of the iceberg.

93

I couldn't agree with you more about wishing they'd start from patient similarities and work backwards. That said, of course, I'm just so bloody grateful they do any research I almost light up when I come across some! I remember taking some TN research into my doctor. It was Australian and they'd done it on capuchin monkeys (these days it's always capuchin monkeys) and he said, after knocking it down, '...and it's only been tested on monkeys". I could have punched him. What else were they going to test it on, humans? No-one does human research these days. And getting any TN research at all was a wonder, but he just didn't want to know. But so it goes.

And you're right about the medical profession not wanting to admit they are wrong. Look at the ridiculous knots they have gotten themselves into over cholesterol, statins, heart disease and all the other related issues that suddenly have been shown to be seriously flawed, if not incredibly destructive (dietary fat as the cause of obesity, anyone?).

I've just posted a new thread connected to what we've been discussing on this one, after I saw a really interesting little snippet in the TNA newsletter. It's about myelin damage and its relationship with cholesterol problems. Sadly there's not a lot there, but oh, it's exciting to me because I have always felt, right from the get-go, that this is my problem.

Here it is if you want to read what little there is: http://www.livingwithtn.org/forum/topics/do-cholesterol-problems-cause-tn

I also couldn't agree more with your observation about finding the high incidence of TN in autoimmune diseases. I experienced that myself first-hand on a thyroid forum I use, as you probably read in my comment above. I think one of the problems is doctors don't make connections. Because TN is such a rare disease, we are scattered all over the world and GPs just don't pay attention. I have throughout my illness pointed my research and discoveries out to my doctor, and supremely uninterested doesn't cover it. If doctors don't pay attention to what we tell them, how will the dots ever be joined?

When I told my neurologist that B12 had sent my TN into a seeming remission, and that it had stopped the pain when Carbamazepine and Gabapentin combined hadn't been able to do it, he was most dismissive until he looked it up and saw that they were connected in historical research. When I offered to let him see the studies I had accrued, however, he refused them, very adamantly. Whereas I know they are busy, you just know he will never, ever consider B12 issues in his patients, never doing so much as a simple blood test. TN is about anti-convulsants, end of discussion.

It's a tragedy, with us on the front line.

And yes, the collagen thing was really interesting to me. It's not something I've ever considered before. I've never really looked into neck problems as a possible cause either. I remember asking my first neurologist about that and she laughed at me, and changed my medication. I kid you not.

Ah, it's a long, hard climb.



aiculsamoth said:

I do enjoy looking at the research that is out there being from pubmed to just anatomy texts,and in doing so I wonder what is the point of all the research, alot of it with a bias towards the institutions for which the author's work. Regardless, there is so much out there on pubmed with regards to TN, that just gets ignored, by the medical profession, because??? there may be many reasons, including those that don't suit egos, if we accept so and so then for the last how long, we have to admit we have been going in the wrong direction.

Tn genetics research by the fpa association, can't help but think why bother looking for the 'new' gene, when their starting point (admittedly I don't know what it is) could indeed be directed at at looking at patient profile with regards to genes already identified in auto immune collagen connective tissue disorders. Mod support states something similar. Bowel disturbances are often involved with these complaints. How is it going to change treatment in the short term, or with the medical knowledge base at the moment?

I believe in the neck as a cause of TN, and the majority of these autoimmune collagen disorders cause issues with the neck, why not first look for HLA B27 and col( whatever gene numbers there are several) genes in the TN patient I believe it is relatively inexpensive.

Not very scientific, I know, but logging on to psoariatic arthritis (a collagen disorder) at Ben's friend the question 'anyone suffer with TN?' was answered in the affirmative by four people. So what you may say? This is a site with only circa 3000 members, and those responding are active members. 4 in 3000, is a lot higher than the incidence within the general population, and probably the tip of the iceberg.

94

You're not a doctor.

95

Lion an interesting statement directed at ? And the point??

96

WWTET,

I don't know why you asked the question with your neuro about the neck, but as you are perceptive about holes you might find this of interest.

http://www.livingwithtn.org/page/cervogenic-model

97

I'm not sure if you are addressing me, Lion, but on the assumption that you are, I don't understand your point. I am perfectly aware that I'm not a doctor. Neither are a lot of doctors, other than by the piece of paper they hold saying that they are. But as I wasn't dispensing medical advice, and as all the studies I was giving to my doctor and neurologists were done by doctors, and therefore were completely 'legitimate', why do you feel the necessity to point out I am not a doctor? Do you feel I shouldn't do research or discuss it with my doctor?

Lion said:

You're not a doctor.

98

That looks really interesting, many thanks. I'm going to read it in full tomorrow when I'm fresh. I already like the point he makes, just in the intro, that patients may have migraine and TN and the two things will be treated separately and never thought of as symptoms of a bigger picture. I developed a debilitating full-time (suicidal!) migraine on Lamotrigine and my neurologist classified me as being a sufferer of migraines on the strength of it. I was annoyed with her for a very long time because it followed me about everywhere I went, medically. Then I realised a good long while later that actually she was right, I do suffer from what I would have called a 'migrainous headache', but really it was just good old-fashioned migraine, no qualifiers called for. I think some women have a reluctance to call headaches migraines because it sounds like you're drama queening, so I never did. I realised I'd actually caused myself unnecessary problems over the years by not calling a spade a spade.

But that said, even although she was fast enough to put it on file, she never investigated it or asked questions - she just did what he says here - put it in two separate boxes and forgot it.

Thanks again for the link - looking forward to an interesting read.

aiculsamoth said:

WWTET,

I don't know why you asked the question with your neuro about the neck, but as you are perceptive about holes you might find this of interest.

http://www.livingwithtn.org/page/cervogenic-model

99

Laura, I saw your message late in the process and I've read through a lot of it but honestly, not all of it. It seems to have sprawled all over the place. I may be wrong but it appears that part of what you are asking is "Is there a surgical procedure available for those of us with TN2?" If so, has that been answered? If so, I am wondering the same thing. I am at the point of needing narcotics and would love some of way of living.

I know that some doctor's will perform surgery on TN2 patients and things will get worse. So, quite frankly, I am scared and my neurologist doesn't even know that there are different types. I am going to go to Hopkins but it is a long wait to get in.

Thank you,

Cathy In MD

100

Cathy in MD,

You're not wrong it has kinda sprawled. You ask the question "Is there a surgical procedure available for those of us with TN2?" The neurosurgeons are now performing MVD for tn2, but with a lesser success rate than for typical TN. We have a rare disease in TN, with no formally recognised cause. Rare though it is in the classification we are meant to accept two different causes for tn1 and tn2 yet no one knows what they are. Yet the neuro surgeons now are performing MVD for type 2, with some success, whilst others are denying MVD will help type2. Burchiel states type 2 as a progression of type 1, and I would tend to agree (if only for the fact we have a rare condition in both tn1 and tn2 but we have no knowledge of the cause of either), the fact that neuros are doing MVD for both would suggest a common cause in their eyes i.e. microvascular compression. But then regardless of surgical outcome why deny MVD for type 2, if they believe it a cause then surely leaving MVC in type 2 would be detrimental to the patient regardless of surgical symptomatic outcome, in the long run. Seems neuros are as confused, or just decide to sit on the fence, or worse. You state you have autoimmune issues, maybe investigate that avenue, or in addition explore the link in the previous post.

Regards