Need urgent advice - how can I forestall return of TN?

Hi, I have TN type 1 which has been in remission for around a year now (I think! I don’t check in case I jinx it!) However, it seems to be returning. For the last few weeks I’ve been getting ‘twinges’ in my TN area (right-hand lower face) which are becoming more consistent and more like the starts of my TN from the first time I had it. What I need to know is if I can slow this down or help it in any way, and if so how? I wondered if something like a low dose of Amitriptyline or something might help it. I was even wondering if a low dose of a tranquiliser might help as it would calm me and thus the stress of worrying about it.

Anyway, if anyone has any suggestions at all as to how I could maybe forestall this getting any worse, or fend it off in any way I’d be really grateful. I feel so helpless in the face of it; it’s like a Sword of Damocles hanging over my head!

Hello Wwte,
While I cannot advise on stopping the recurrence of the pain, I can make another suggestion. When I read about all the attempts with medication on this site (some successful, some not), I recall my own disappointment with a number of attempts with many of the medications prescribed on this site. None of them ever worked for me and the side affects were far worse than any relief I experienced. What has helped me a great deal is an Upper Cervical Chiropractor. I currently have 90% relief from my TN pain and anyone who has experienced TN knows that 90% relief is wonderful. I am often surprised at how little attention is given to the success of UCC on this site. I am still somewhat new to the site, so maybe it is here and I just have not found it yet. If you think you would be interested in trying this option let me know and I will try to point you in the right direction if you would like more info.
BMAC

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Hi there . . I also had/have TN 1 (on the left side) and opted for a successful MVD surgery three years ago (10/30/13). I have been pain free ever since. TN type 1 has the best success scenario with MVD surgery so you might want to look into that. If you would like, you can read my story that I published on my diagnosis, treatment and path to surgery. Here you go . . Trigeminal Neuralgia: How I Survived the Worst Pain Ever.

Thank you, BMAC. I’ve had this suggested before but in the UK there is only one chiropractor I know of who does this and she’s in London, the other end of the country for me. Additionally, I’m a little wary of the procedure because chiropractors damage a certain amount of people every year, as A&E will testify. But all that said, I do keep it at the back of my mind if push comes to shove! Thanks again.

Thanks, Mybell, your story makes fascinating reading. MVD is too extreme for me at the moment, but yes, absolutely, if this does come back full-on, MVD would definitely be back on the table. I had a lot of side effects with the 3 drugs I used first time around; they decimated my white blood cells, gave me hypothyroidism and hyponatraemia, plus I had an allergic reaction and developed a nasty skin rash that has left me with scars, so I’m not a great fan! That said, here in the UK my neurologist laughed at me when I asked about MVD and said “Good luck with that” so I’m not sure how easy it would be to get one. But it is always reassuring to read about anyone who has had a successful MVD because then you know all hope is not lost if the drugs stop working.

Hi WWTET

I know we have conversed before,

Before I comment, I meant to reply to a previous thread of yours where you mention cholesterol and TN, I didn’t because I couldn’t find a connection in the medical research. Doesn’t mean there is no connection, but I like confirmation.

With regards to upper cervical chiropractic, you won’t find any A&E statistics, it is not the case. Normal chiropractic again no stats. Scare stories I believe. That said performed in an inappropriate setting possible, but chiros are trained. I believe the risk of MVD, of which there are certain stats, far out weigh chiropractic of any sort.

Either way there are other neck related treatment modalities; physio, osteo, massage, diet, self help exercises/ advice which can possibly play an important role.

Hi Woman with the elect :slight_smile:

You appear to be British like me, I would speak to your neurologist regarding a ‘maintenance’ level of medication. From the sound of it you have had an allergic reaction to Tegretol, but there are different drugs available. My neurologist has now referred me to a neurosurgeon up here in Lancashire, fingers crossed, for a surgical date soon. As with any surgery there are risks, but I have got to the stage now where anything is better than the pain and anxiety of pain striking :frowning: I want to reclaim my life and start to live again :slight_smile: I have just switched from Gabapentin to Tegretol and steadily increasing the amounts, I have never been a pill junky and trying to tell medics that they are necessary for me is getting beyond a joke. I wish you luck on your journey with the ‘Beast’.

I have recurrent trigeminal neuralgia 1 and 2 from gamma knife. If you’re not wanting surgery, even though MVD did buy me 7 years of relief, I would suggest going to your neurologist. Have you tried Lyrica? It helped me for 5 years. Now that it no longer works and I’ve used all medication, I’m stuck with pain. I’ve had TN for 25 years.

Hi Aiculsamoth, good to hear from you! I know what you mean about liking confirmation (about a possible cholesterol connection); I feel the same way. I do still wonder though if a connection may be there but it’s not being made because the research isn’t there (yet) - wouldn’t be the first time!

With regards to the chiropractic, I actually did have the statistics, right here, until this morning when I took the book back to the library! It was statistics for the A&E in an English hospital. Unfortunately, because I have a memory like a sieve I can’t remember anything about it other than it was a book about alternative medicine by (I think) Rose Shapiro. That said, she was very against alternative medicine and thought anyone who wasn’t an orthodox practitioner was a quack, so there was a definite bias there. I actually returned the book only partially read because she was as guilty of hyperbole as the people she was criticising! But the injuries are substantiated, including paralysis and even the odd death from broken necks. But spinal damage is more common. However, I still keep an open mind on the practice, because I believe people have had relief from it, if that’s where their problems lie. It makes sense to me, so I definitely wouldn’t dismiss it out of hand. I don’t feel it’s right for me because I don’t think it’s my issue, but you never know. Some day I may have to take the plunge if I run out of other options!

Hi Juno, I was very interested to hear you are up for surgery. I was given the impression it would be impossible to get. Can I ask how long you’ve had your TN and whether you’ve had any problems being considered for it? Have you been pushed forward for surgery because you are on unmanageably high doses of drugs?

Hi Skippy, I don’t have a neurologist currently as I am in remission (you just get an appointment as and when you ‘need’ one here in Scotland), but no, I’ve never tried Lyrica. I see it’s another anti-epileptic drug and I’ll bear it in mind if I need to go back on drugs, but I was really looking for something less aggressive that might forestall a decline. I suspect however, from these replies, that I may be wishing for the impossible!

WWTET,

Hi, whilst I have not read her book,(Rose Shapiro), I am loathed to buy it, having read newspaper articles in the past. Whilst not saying she is incorrect in her stance, a lot of anti alternative propagandists, don’t do their research. They make their money by their anti stance and nothing will change their mind, including the orthodox professions ignoring their own research when it is not favourable.
The hospital you refer to regarding chiro, if you look on their website (chiro.org ish) re complaints I bet it doesn’t come close to any stated tally of complaints registered with the profession.

A lot of alternative medicine I believe to be hogwash, indeed maybe through ignorance.

When disease IS caused by;

Stress,
Diet,
Pathogens
Trauma, micro/ macro
Toxic compounds, and only the above ( regardless of genetics, in a single generation)

Anyone who thinks orthodox medicine is correct in having to add anything as opposed to taking it away I have a strong belief in defying. ( I’m not saying this is your belief)

We have to be fairly ignorant in thinking we, us clever humans can beat nature as opposed to working with it, which on the whole alternative (prefer REAL) medicine strives to do.

Most critics of REAL medicine/ health quote a lack of research, who is going to pay for it when it is short of pharma dollars. Orthodox, and thank the pharma companies for the term, has never cured anything.

Reading on line reviews for said book, positive, the power of ignorance and advertising.

Two of the biggest killers in the US heart disease and diabetes, which are now recognised by doctors to be lifestyle; so don’t add a crutch in the form of pharma, advocate lifestyle changes, in the main subtract, not add toxic chemicals.

In the above especially cardiovascular disease and diabetes, drugs have been shown to increase an early grave, but not shown/ known by doctors.

The US for example has one of the unhealthiest populations in the world, prescribes the most drugs and has one of the highest new born death rates in the wealthiest nations. In addition the biggest killer is accidental death in hospitals, followed closely by death due to correctly prescribed pharma.

Any author who slates an alternative to orthodox medicine is well…this in my book pertains to head and facial pain.

As someone who developed health conditions after being treated with medications (GERD/Oesophagitis after being treated for H. Pylori and IBS after Carbamazepine) I know only too well the damage orthodox medicine can do! Unfortunately, sometimes they’re a have-to-have situation, and orthodox medicine is what you want & need for emergency treatment. I always cite my gallstones. I elected not to have surgery, even although I had a very bad attack (2 actually) of biliary colic which landed me in hospital. Instead, I elected to take ursodeoxycholic acid tablets (ox bile) which are a ‘natural’ product (although they were prescribed) which are supposed to shrink the stones. I persevered for a year and a half, in terrible pain, and losing 5 stone in weight in the process (and possibly giving myself TN due to B12/fat malabsorption problems), and they did nothing - zero. And that was eating an allegedly super-healthy low-fat diet too. I had to end up having surgery anyway, which means I suffered unnecessarily for a year and a half.

I understand why people say ‘Use natural’ but sometimes the orthodox medicine is the only way that works. Certainly, without Carbamazepine, as awful as it was, I think I’d have killed myself. I’d certainly have starved to death! So I don’t condemn orthodox medicine any more than I condemn alternative, but it certainly has its failings - not least of which is treating the symptoms and not the disease, and being so very very slow to change its mind on anything (like cholesterol, statins and saturated fat, to name but three!) And then there’s the doctors’ generalised arrogance and their God complexes - they’re certainly hard to love! I think that’s where alternative medicine often wins out (sometimes unmeritedly so) - they’re much better listeners.

I don’t know if this is of any interest. But I read it on another thread. But can’t remember, which one!!
Someone had suggested the use of Spiralina. Being very successful x

I agree there is more than a place for orthodox, I feel it a shame there is a their way or no way mentality, when the two could work together.

As for they are better listeners, the complementary/ alternative want your cash, hopefully they are ethical with it, but a UK doctor gets paid regardless of his attitude.

If someone suggested ox bile tablets, I don’t think I’d be expecting any great results. Gallstones and a low fat diet are not conducive, in my opinion, a high fat- good fats would have been more appropriate to get your gall bladder working, after softening stones (if it is at all possible).

You highlight the problem in your actions on advice taken with alternative medicine, there is little research, there isn’t the end point money, you could have gone to five different therapists and gotten different advice- one might have even worked?? How many therapists do you visit? This is why most successful alternative practices are long standing and generally don’t have to advertise unless there is a divorce.

You’re not wrong

Well I don’t speak british real well so am missing part of the discussion but I am familiar with Rose Shapiro Her Book was publishe by some 10 years by.Harvill Secker who is owned by the massive German media conglomerate, Bertelsmann Stiftung, owned mainly by the Mohn family. At the time the board was made up of several leading executive members of Bayer, and three of the Mohn family who were medical doctors. The major project of their Family Foundation at the time was the reorganization of the German public health system and pushing a a pretty strong pharmacology agenda. Shapiro at best was strongly biased and worst pushing propaganda.

We believe in allowing people personal choice in health care options, and believe in an open or honest discussion about it. That means NOT dissing (an Americanism) others choices or using anecdotal reasoning or broad strokes of absolute reasoning to defend a choice. This is a peer to peer network where we share personal experiences. By the same token one should never take offense when offense is not intended.

Yes two of the biggest killers in the US heart disease and diabetes, but they are NOT recognized by doctors to be lifestyle in many if not most cases. (Certainly there are cases of stupidity and bad choices)

In the case of cardiovascular disease and diabetes, drugs have not been shown to lead to an early grave. Yes these folks find themselves on the wrong side of the turf before others but they were on their way anyway. The numbers actually show an extension of life for many (not all).

The best way I put it is you don’t find faith healers working in hospitals for the same reason you don’t find psychics buying lottery tickets.

@Woman_with_the_elect The only advice I can offer is to look backwards. One thing every Facial Pain patient has in common (and perhaps the only thing) is they all have “triggers” Figuring them out whether it is diet, environment, certain activities and finding a commonality in them can be a challenge. Avoiding those triggers may not forestall things entirely, but they can help. It could be as simple as a new mattress or pillow (Trust me on the pillow thing been there)

TJ

Hi Debs, thanks for the Spiralina, suggestion - I’ve never heard of that. Looking it up though I see it has B12 claims made for it (which appear to be incorrect) so it’s maybe that that people are suggesting it for; in which case it would be redundant for me as I already get monthly B12 shots, but thanks for the suggestion anyway!

Hi TJ, I had no idea Shapiro’s book was (originally?) published by a pharma conglomerate - that certainly explains a lot! I wondered why she was criticising things like Armour Thyroid, which used to be the norm before the synthetic version was invented. And I absolutely agree with you on keeping an open mind on the alternative v. orthodox argument. It’s a bit like the vegan versus paleo arguments you see - people lose sight of the fact that we are all supposedly wanting to find the healthiest diet, not be mindless zealots defending a cause. That said, I can’t agree with the idea that diabetes and heart disease are not lifestyle choices (if that’s what you’re saying) since, with the exception of congenital cases, that’s exactly what they are. Likewise, I’m afraid that statins, used for cardiovascular problems, certainly do lead to early (or more accurately earlier death in more cases than they should). But that said, in general, orthodox medicine helps these cases rather than hinders them; and we’d be in a sorry state without it. What it doesn’t do though, and it should, is advise people with heart, and more particularly diabetic conditions, that the right diet can actually greatly reduce and sometimes cure the need for medication. That ignorance of nutrition (in fact that almost wilful ignoring of nutrition) is where it lets us down.

As for my threatening TN, you are absolutely right about trying to identify triggers. I’m on a Gerd & FODMAPS diet currently (not for TN!) so it definitely makes it harder to identify what does and doesn’t cause problems. The only thing I’ve been able to positively identify as a problem is stress/anxiety (ironic, considering the fear of TN is enough to trigger both those!) but I have been at a loss as to how to get on top of that. I do hypnosis but I sometimes think my brain chemistry is completely screwed because it seems highly resistant to change. I am fascinated about your pillow though! What happened there?

Yes, Aiculsamoth, the Urso Acid was a big thing in the 80s/90s. It was entirely orthodox and was going to be the big breakthrough to avoid surgery. When I first fell ill the young surgeon who saw me in hospital wanted to take my gallbladder out immediately and I, understandably, panicked. But when I raised the tablets with him he was very dismissive “Oh, they don’t work” and ironically it had the obverse effect on me; it made me more stubborn about trying them. I thought he was being young and arrogant. As time went by though, and I got no better, I started combing everywhere and anywhere looking for data on them and couldn’t find a single case of them working in a real human. I even went on all the daft ‘liver cleanse’ sites where poor souls drink nasty things and make soap-stones in their guts and asked if anyone had ever used them. No-one had and no-one knew anyone who had. I also noticed that all the studies claiming they worked were from the 80s/90s. The arrogant doctors were horribly right. I still hung on though, determined to make it work. I now have the scar on my belly (and a very dodgy fat digestion!) to prove that they do not. I’m afraid once you get biliary colic it’s almost inevitable your gallbladder is coming out! That said, I would have had a truly miserable life without that surgery - God bless it, inadequacies and all.

I’m not sure what its like in some places. I was associated with the International Heart Institute of Montana for a number of years so I am spoiled. We had surgeons, interventional cardiologists etc on staff like any normal heart center. What turned us into one of the top centers in the country though was the addition of some other specialties including physical therapists and nutritionists and even a chiropractor (which has expanded into the practice of doctorate level physical therapists) and even Gastroenterologists Over a period of three years we developed into the best rates in the world for the fewest readmissions for “heart Failure” There are few centers these days that don’t have integerative practices.

Heres the MY problem with the “natural” point of view. These practitioners spend an inordinate amount of time “blaming” the patient for their problems. Its certainly not unheard of in traditional medicine either. How many facial pain patients have been blown off by docs that the problem is “in their heads” (or some version)? Both blame the patient for their problems (the natural approach more frequently) and that if the patient would only do XXXX they would get better. neither recognize that for these folks SOMETHING IS BROKEN and what is normal is not normal for these patients.

The problem is, it isn’t that simple (Eat so and So, do such and such.) Both fail to recogognize SOMETHING is broken. Diet etc is only a symptom NOT the cause. My wife and I for example eat the same food (pretty close to FODMOPS because of my grandaughters autoimmune disease) yet her cholesterol levels are sky high mine are not. I have a weight problem she does not. Yeah there are a fair number of folks out there who live stupidly but there are far more who have problems no matter what they do or what they eat.

My niece is the director of the bariatric program at USC. This girl was/is an athlete (world class gymnast as one point) her sister a pro golfer yet they both ended up gaining HUGE amounts of weight. They hadn’t changed diets, maintained or increased exercise levels. The weight wouldn’t leave. For them bariatric surgery was the answer. What was broken? No one knows (yet)

Why do people have chronic pain while other folks living the same lifestyle do not? There are NO simple answers yet as we wind it down we see symptoms In the case of TN we know its over active nerves, so we treat that. For many it offers relief, for others it does not So we wind it down a bit further and we discover that 80% of endorphins (the things that control pain) are found in the gut. So we make the gut more efficient whether through other medications diet exercise etc and some get help But what we haven’t figured is WHY those things occur. If there was a single approach or simple answer, we’d have it nailed. NOBODY but nobody has it. All we can do is try anything and everything we can. The only quacks out there are those who hold to a single approach.

The pillow thing? Mostly it embarrassing. In my old life I was a well known and productive “scientist” in my new life I’m just me. We bought a new bed that came with some sup duper new high tech pillows as freebee. A few weeks after we got it I started waking up with a near migraine headaches TN symptoms and more. I started down the diagnoses road certain that I was starting fusion (I have anklyosing spondylitis among other things) Scans of all sorts nerve tests etc etc. Then one day my granddaughter asked me if she could have my old pillow because she remembered the goose the feathers came from and wanted to be close to him (not that she minded eating him… ) I light went off. I got rid of the hi tech pillow started using my old one and voila, I was cured overnight. Some scientist HUH?

TJ