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Living With Facial Pain

Evidence that Ketogenic Diets can help TN?

#1

I think I may have asked this before without success, but I just found some new evidence via PubMed that ketogenic diets could potentially help TN. The research paper below is about treating cluster headaches, which they seem to consider as being similar/related to migraines, with a ketogenic diet (very low carb, high fat) and it had an astounding success rate. These diets are also used to (successfully) treat epilepsy (particularly in children), which is why I’ve always wondered if they might work for TN, since TN is related to migraine and epilepsy, however indirectly, by being about an over-easily triggered neuron problem (over-simplified, but you get my drift!)

Here is the paper in its entirety:

The most remarkable thing about this study is the success rate. It’s so high that it cannot possibly be a fluke, plus it is far higher than many (any?) medications can offer. Out of 18 subjects, 11 of them had “full resolution” and 4 more had sizeable reductions in pain and frequency. The monthly number of headaches dropped from 108 to only 31 after 3 months on the diet. Perhaps if they stayed on it longer it may have got even better!

This interests me particularly because I suffer from migraine and mine have a cluster headache appearance: they happen over one eyebrow (always the right - same side as my TN) and they can be so severe my eye waters and gets sensitive on that side. Often one of the most effective things I can do for my headaches is to pinch my brow/eye socket and massage it quite forcefully. I can actually feel the pressure right down into my sinuses and if I massage it it almost feels like liquid draining out my face - so because of this cluster headache effect I wondered if this might work for me.

Has anyone ever been on a ketogenic diet for any reason? If so, did you find it made any impression on your pain/TN/headaches/anything medical? I’d be very curious to hear of anyone who has and experience with is, even if it’s just from being on a low carb diet for weight loss!

I have a feeling I’m going to have to bite the bullet soon and do a ketogenic diet myself just to play guinea pig for us all. If anyone feels like joining me give me a shout!

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#2

I personally don’t believe anything that states “full resolution” was achieved for a chronic condition.

Migraines are known to have triggers and you can dramatic reduce your number of migraines by minding your triggers, I’m living proof of that, but full resolution? No, I don’t believe it and I’m not sure you can ever convince me it actually happens.

What I do believe in is the placebo effect. Mind over matter really work, it’s been proven over and over again in all sorts of different ways with all sorts of different conditions. Maybe giving someone something to focus on like such a dramatic change in diet while telling them it will “cure” their migraine creates such an effect.

And, of course, eating a better diet never did anyone any harm.

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#3

oh – and as a random factiod… I just went through a screening to be in the human trials for a new migraine treatment and one of the questions was whether or not I have TN. This implies to me that finally, someone, somewhere, is starting to take official notice of connections between TN/ATN and other pain disorders like migraines.

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#4

I’m the opposite, Azurelle, I’ve come to hate the whipping out of ‘Placebo effect’ to explain non-standard medical ‘solutions’ - probably because my first doctor took to using it as an explanation for why B12 injections worked on my TN! It’s not that I don’t believe in placebos, I do, it’s just that when you look at the research on them, they don’t work on more serious complaints, at least not long-term. I think not being long-term solutions is what marks them. It’s typical of faith healer and ‘miracle’ cures that the cure works while the people are on a high from the event and being ‘touched’ but as time passes, often just days or even hours, the effect wears off as the illness reasserts itself.

I do believe in the “full resolution” statement here simply because the people were on the diet for three months. A ketogenic diet is very rigorous and restrictive so no-one is going to do it for fun, other than maybe people suffering from orthorexia! There was plenty of time for the diet to fail and for people to get fed up. In fact, if you read the study in full you’ll see that one (or two?) patients did choose to stop doing it long-term simply because they found it unsustainable, and they were people for whom it worked!

But even if it was just a better diet improving matters, that high success rate would indicate that better eating can ‘cure’ migraines and epilepsy, and I’m absolutely certain that’s not the case. It seems to be ketogenic diets specifically, and that’s what interests me.

It looks like I’m going to have to take one for the team if I want to know - I’ll keep you posted on what, if anything, happens (other than me going mad for toast or cornflakes!)

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#5

Oh that is a very cheering factoid, Azurelle - thanks for letting me know. The idea that it is finally penetrating that there might be a connection between the two conditions is hugely reassuring. If you are part of the trial, and not just the double blind placebo taker, it will be great if you see results - let us know. Also, maybe you’ll get a chance to talk to some of the scientists/doctors about connections between TN and migraines. Maybe you could influence them to do further research! Best of luck!

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#6

I eat low carb, it is actually a very healthy way to eat, if you eat good quality meats and fats (I’m very much into nutrition). I’ve been unable to drop my carb level to below a certain level, because then it affects my sleep, which is fragile at the best of times. So I eat low carb all day and eat some carbs in the evening. Therefore my diet is not considered ketogenic.

I would say it certainly doesn’t hurt to give it a try! You might want to drop your carb level slowly so your body can adjust. Be sure and drink enough water and get enough salt in your diet also as you switch. It might take some adjustment if you are used to eating a lot of carbs, but once your body adjusts it really is no big deal. Certainly can’t hurt to cut out sugar and flour, and eat more vegetables and meat. If you cut down carbs, you will not get fat from eating a higher fat level! I eat a ton of fat (butter, cheese, heavy cream in coffee, sauces, bacon, etc…) and I’m only 140 lbs.

You might also look into intermittent fasting, which is a way of jump-starting ketosis and is very good for the body. I skip breakfast 2-3 times a week, it is not hard at all. I’ve not gone longer than about 24 hours, but would like to get up the resolve to do that some day, see how that affects neuropathy.

Good luck and keep us posted and how that works for you!

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#7

I do believe in full resolution for migraine, but do consider it a syndrome i.e. multiple factors coming into play, all might need to be addressed if possible

TN and migraine, think this study is of interest though I’ve not paid for the full article, but does state “Similar results were reached in other headache groups as well.” I’m assuming autonomic cephalgias and the four TN patients.

http://web.b.ebscohost.com/abstract?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl=13001817&AN=113708624&h=DlyM%2FII1SZJoCkcsEI0e5Krgj%2BG0HR9BWuRxxvgQMFf9Jr71BEFH0d8h1D4RGz66ZnPOCCUOVOGclDVX%2FHcB2w%3D%3D&crl=c&resultNs=AdminWebAuth&resultLocal=ErrCrlNotAuth&crlhashurl=login.aspx%3Fdirect%3Dtrue%26profile%3Dehost%26scope%3Dsite%26authtype%3Dcrawler%26jrnl%3D13001817%26AN%3D113708624

The other;

http://journals.sagepub.com/doi/abs/10.1177/0333102416644436

Diet and TN whether ketogenic or otherwise. Think it was estimated that some 80% of 'diseases presenting to the UK NHS are metabolic, diet related.

Seeing how Tn cause can’t be agreed upon as to cause, TN and accompanying inflammation should be influenced by diet regardless of cause. What heals anything, if it’s going to happen, what you put in your mouth.

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#8

I’m going to nitpick here. There’s a difference between migraine and headache. I agree that some headaches can reach full resolution via life changes – heck, I have a very good friend who had debilitating “migraines” throughout law school and her first law job. Nothing help, ever. She made the rounds to all the docs, the meds, the whole thing. She eventually went into talk therapy and eventually changed careers. She hasn’t had a “migraine” since the week she left her law job 20+ years ago. It was all stress related. And while stress headaches are horrible, and even though they are often treated via migraine meds and protocols, they aren’t migraines.

Headache and migraine are different but in the current culture they’re all lumped together.

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#9

Thanks for replying, Ziggy - very interesting to meet someone who has applied low carb, but, of course, low carb isn’t the same as ketogenic, as you know, and it does seem to be the ketones in the brain that are doing the job vis a vis the migraines/epilepsy etc.

I was doing very well with skipping breakfast - I wasn’t eating it at all all week - until I started Oxcarbazepine and had the all-too-familiar nausea. I noticed it was worse on an empty stomach and because I take a tablet in the morning I started having some cereal again to allay this. While it has been good for the nausea it has rather spoilt the good effects (at least on my weight!) that I was getting from skipping breakfast. I can now go a good few hours without eating breakfast but unfortunately I always end up with a migrainous headache from doing it. The good thing is eating nearly always resolves that, but it is annoying.

I am indeed doing the running down of carbohydrates. I’m not renewing any I’ve got; when they’re gone, they’re gone. I’m looking to slowly introduce low carb replacements, such as cauliflower rice, as I go along. The hardest thing is going to be giving up sugar (and fruit!). Modern foods are all (too) heavily sugared and even while I’m not enjoying the taste my brain thinks they’re fabulous! They say that’s a sure sign you are having problems with carbohydrate. If they’re right, I’ve got it in spades! I always find it takes me about two weeks to get off sugar and every day is torture. I try to avoid shops as much as possible and have developed techniques of avoiding the aisles with anything sweet in them. But I swear it’s like a siren call to me. Once I’ve been off it about 3 months I don’t miss it, but it’s hard work getting there. This time I intend to stay off it; I really cannot be bothered going through this same nonsense over and over. I am going to be fully abstinent!

P.S. I did, unintentionally, often go without food for 2 or 3 days (once five days) and it was surprisingly easy. Rather like sugar, once your body realises it’s not getting any it kind of gives up on it. I remember during my 5 day enforced food-free period it wasn’t food I missed at all, it was water. I was put on a drip eventually for that, but the only time food was an issue was when they brought meals round the wards and I could smell them. Interestingly it wasn’t the sight of it or the idea of it but the smell. Don’t let anyone tell you the obesogenic environment we live in doesn’t profoundly effect (over)eating!

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#10

Hi Aiculsamoth - very interesting studies, thanks. Interesting that they actually included TN patients in the first one, although I suspect they’ve been sufferers who get their TN in their occipital region, like a headache. And, of course, they are using a nerve block which will likely work on any kind of nerve pain, but still interesting.

The second study though is really interesting. I’d never heard of migraine-tic and see it wasn’t discovered till 2004 - think of all the poor souls who had/have this who had no diagnosis. But more importantly, in medical terms, it being the dinosaur it is, it means the connection of migraine to TN is obviously there and science/medicine just isn’t ready to acknowledge it yet. It will take them at least 40 years to get it anywhere near the mainstream! And they actually say “We suggest that there is a common pathway for trigeminal neuralgia and migraine”. This gives me great hope for the ketogenic diet since it is regularly used to treat migraine and with considerable success. Fingers crossed. Oh how I wish it wasn’t £40 to read this study!

I know it says in one of the - what? Two? - books on TN that diet doesn’t influence TN but how they can say that when they don’t know what causes it, I do not know. I shall keep reminding myself of this study when I am struggling to eat 80% fat a day and craving rice!

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#11

Hi azurelle,

Wouldn’t call it nitpicking. The example you highlight in your friend I would say highlights the medical model of diagnosis and treatment, who says your friend didn’t have migraine caused by tension/ stress, after all I’m assuming she had a ‘diagnosis’ by medics, her symptoms matched with the word migraine, a pattern of symptoms. If it gets dismissed as, oh it wasn’t migraine after all, it in itself makes the diagnosis of migraine worthless, just what it is a description of symptoms, and consequently anyone who cures/lessens their symptoms outside of the medical model of treatment never actually had migraine. How is this train of thought ever going to be inclusive of medical hypothesis and research. We diagnosed you with diabetes type 2, since you lost weight changed diet, you no longer have it, then it wasn’t diabetes.

More pertinent to the site, we diagnosed you with TN type 1, we saw a blood vessel on MRI on your nerve, yet you’ve managed to be pain free due to xyz off your own back outside of medical treatment protocol. Obviously wasn’t TN1 after all, “nothing to see here folks, please move along”.

The line of thinking is destructive, egotistical, non evolving and common.

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#12

Excellent point 'moth!

---- aiculsamoth ■■■■ wrote:

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#13

Couldn’t agree more with Azurelle - very astutely observed and succinctly put, Aiculsamoth.

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#14

I did a lot of diet research on a prior medical adventure, from my personal investigation I concluded that a “Nutrient Dense Paleo type” diet was the healthiest. As part of that process I did investigate the entire spectrum from Fruitarians to Inuit(meat/fat) and though I could not consider myself as an expert, I could consider myself informed at the very least.
Chicks are generally carby, with both intermittent fasting as well as ketogenic diets men adapted better, women often had problems, so if you are planning to go down this route, then slow & steady. It may not be the diet per say,. but what we are lacking in the diet protocols through lost knowledge, eg when there is a fresh kill among the Inuit certain organs are carefully removed and specifically dissected so every member of the tribe gets their dose or the fact that many don’t realise how much fat is required in diet and as one person described the treatment of their sons epilepsy the greens are there just as a carrier for the fat, so people end up eating too much meat(protein) and not enough fat. There are only two fuels for the body fat & carbs and your body firstly needs fuel, yes vitamins, minerals, co-factors etc are required, but no fuel and the body begins to burn the furniture (your muscles) just to get through the day and this is a poor third rate solution. So the body firstly needs fuel to put the building blocks in there appropriate places, when you drop out the carbs you gotta seriously ramp up the fats, for me that means animal fats, coconut oil, olive oil and a couple of other minor ones. In the anti establishment diet Saturated & monounsaturated are ok, polyunsaturated are not, vegetable oils are considered the cornerstone of un-health.
I do think everyone should explore the dietary experience and determine the best health outcome for themselves.
As I understand ketogenic diets were treatment of choice for epilepsy, then drugs came along and the world changed, in recent times it is drug resistant epilepsy that ketogenic diets are finding applications for, the other connection is Alzheimer’s being halted by the addition of MCT’s (medium chain triglycerides) though these are both a type of neural condition, I do not believe that these results directly relate to TN, In my experience of TN it appears to be musculoskeletal impact on neural pathways, so I lean towards a solution that corrects postural behaviour. I do not have an exhaustive understanding of TN, so I cannot deny other causal factors and hence I wish you well in your journey and hope that some of the points I raised may be of benefit to you.

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#15

Give up carbs? Over my bread body! laughter

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#16

Thanks, Sparky, very informative. Yes, they use ketogenic diets for young children because it can actually cure them (as in they don’t have seizures providing they stay on the diet) and also for drug resistant cases of any age. They are also now using them for drug-resistant migraine, and as the study above shows, drug-resistant cluster headaches. I think the only way I’m going to find out what, if anything, it does for TN is do the damn thing. Wish me luck!

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#17

Different thread, but thought interesting and may be worth asking about

Notafraid4h
I have been getting the botox injections since September, 2017. Yes, they work well. I actually get them for migraines, but since getting them, my tn pain has been greatly reduced as well.

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#18

You’re not the first to suggest this, Aiculsamoth, but thanks! It seems to be in quite common use in the US, but I don’t know if the NHS would offer it in the UK. At my age I kind of fear suggesting it in case the docs think I’m trying to get free cosmetic treatments! You should have seen the fol-de-rol I had to go through when I went and asked my doc for cannabis oil. They ended up writing to a neurologist and he would only consider Sativex and then when that was put to him said I couldn’t have it because it was off-register and only only for MS patients. Talk about having the dice loaded against you!

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#19

Put the link to possibly link migraine/ tn. That said I know of someone who has botox for cervical dystonia, on the NHS If you thought it might help your situation, the NHS generally, tick boxes. You need to fill these boxes, not that hard, the first is to ask, with a little knowledge as to why you should be a candidate. You like your research… still might not get there. TJ states no one should be denied medication, botox isn’t going to cure, but symptomatic relief has its place, if not a crutch. Reckon on the NHS if you ask/ request the right way, you would get it, with info behind you, I’d think you would get it.

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#20

The fellow who turns up for dystonia states the doctor’s desk is full of spent needles, he’s too lazy to put them in the sharps box, he isn’t just injecting for dystonia, kind of a production line. Plus or otherwise, unsure.

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