Hi, I wonder if anyone who knows about using the ketogenic diet for (usually childhood) epilepsy knows exactly why it works? I don't suffer from epilepsy but I have a rare condition called Trigeminal Neuralgia which has some similarities: it is treated with anti-convulsants and it features damaged/erratic neural firing (acute electric shock pain in the trigeminal nerve).
I have a theory that TN may be part of Metabolic Syndrome and just isn't recognised as such. Given that Metabolic Syndrome can effectively be treated with very low carb or ketogenic diets I wondered if it might be effective for my TN.
Although I've read about the ketogenic diet being highly successful in reducing or curing childhood epilepsy I've never seen any information as to why or how it does this.
I'd be grateful if anyone who knows about the diet or knows any research on the whys and hows of it could get in touch and share their wisdom. Many thanks!
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Chancery
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This is an abstract from one paper on 'dietary therapies for epilepsy':
'Abstract
Since their introduction in 1921, high-fat, low-carbohydrate "ketogenic" diets have been used worldwide for refractory childhood epilepsy. Approximately half of the children have at least half their seizures reduced, including 15% who are seizure free. The mechanisms of action of dietary therapies are under active investigation and appear to involve mitochondria. Once perceived as a last resort, modifications to initiation and maintenance, as well as the widespread use of pre-made ketogenic formulas have allowed dietary treatment to be used earlier in the course of epilepsy. For infantile spasms (West syndrome) specifically, the ketogenic diet is successful about 50% of the time as a first-line treatment. New "alternative" diets such as the modified Atkins diet were created in 2003 and can be started more easily and are less restrictive. They may have particular value for countries in Asia. Side effects include constipation, dyslipidemia, growth slowing, acidosis, and kidney stones. Additionally, neurologists are studying ketogenic diets for conditions other than epilepsy, including Alzheimer's disease, autism, and brain tumors.'
I'm interested in this from a research point of view.
Meryll Streep also did a made for TV film about the diet. Many of the parts were played by people who had been controlled on it for years. Its probably on IMDB under her films. Though it doesn't explain how the diet works it is really about how screwed you can be in America if you have no medical insurance and a family member develops a chronic illness and nothing seems to work.
If you want any more info give me a shout I have a load of papers.
That was a REALLY interesting paper, thank you. The most interesting thing for me is right at the end where they mention, almost in passing, that there is some evidence of it working in migraines. I suffer with migraines intermittently, but, more importantly there is a strong connection between TN sufferers and migraine (there are far more migraine sufferers in the TN population that the normal population), so, ipso facto, you'd think if migraines & TN are connected and the ketogenic diet works on migraines then it may well work on TN.
I tried to discuss this with my TN forum but I don't think anyone had ever gone on a ketogenic diet so no correlation has ever been made anecdotally. While low-carb is well known, it tends to be for weight loss and isn't as extreme as true ketogenic diets. One of the biggest problems with TN is it is a rare condition so very little research gets done and virtually none on causes, it's all about pain management. Additionally, I think when people are in the active cycles they are in so much pain/doped up they couldn't face doing a ketogenic diet at the same time! In fact, TN would probably make a ketogenic diet difficult because chewing meat is well-nigh impossible sometimes.
But I'd certainly be grateful for any other links you may have to any research on other neurological disorders/ketogenic diets (rather than use in epilepsy) or, God forbid, any that mention TN (unlikely!)
That's another really interesting paper, for entirely different reasons - they are advocating the complete opposite of a ketogenic diet! Zero fat as opposed to all fat.
I've come across the LFD for MS before. In fact, I read a book on the subject recently, but I am sceptical about it for one very significant reason. Before I came down with TN I had been on a VLFD (as in virtually zero fat, well below what this paper's diet recommends) for a year and a half. This was forced on me by being very ill with gallstones.
After I had my gallbladder removed I reintroduced fats, quite slowly, and a while after that I came down with TN. My B12 was low because of the low fat diet, but I always felt that the low fat itself had possibly caused the TN problems. After all, your brain needs fat to function.
That said, there is another way of looking at it, that yes, my B12 had suffered and that may have been a triggering factor, but it also may have been the reintroduction of fat that triggered TN. It's possible...
My only concern with this study is it is self-reported, both on how well they complied to the diet (people lie about what they eat!) and also on how much their pain improved. It is possible that their TN improved simply because they were eating BETTER rather than just low fat.
I'm going to go to my TN forum and ask if anyone has ever tried this and refer them to this study. Thanks a lot for this; it's given me a lot to think about. X
No, Ash, sorry, I didn't. I have enough struggle trying to do low carb! However, I would really like to hear how you get on, both with the diet and any health changes you get from it, not just to your TN, but that one would be especially interesting. So if you persevere and get any interesting results please do drop me a message. Very best of luck with it - I'll keep my fingers crossed for you.
There's also this TN forum, if you're not aware of it. This is the one I use all the time as it has members from all over the world so you get far more info (and more people to ask), than you do with the UK ones.
Very glad to hear it. Hope it continues to give satisfaction so you can see what it does for your health - and please do let me/us know if you see any improvements. I'd love to hear about them.
Hi Ashlady! There’s a group on fb that would definitely interest you! Some have tried the Keto diet with success. Trigeminal Neuralgia support group.. check it out!
I have TN and had MVD surgery to correct it. Surgery was declared a success, but my attacks restarted about a month post surgery. I’ve been Keto for about 9 months as it seemed logical for the same reasons you declared. I can confirm that Keto is effective in significantly reducing TN episodes/severity.
Hi Micro, that's really interesting to hear. If you have time could you give me an idea of what your TN was like before the keto diet and how it has improved since? Also, was the improvement gradual or quite quick? Lastly, has it improved your health in any other noticeable ways?
My TN was about as bad a case as I've heard described. I usually had 2 severe attacks per day that would be comprised of volleys of pain level 10 lasting 1-2 hours each. Pretty much anything could set them off, but the usual culprits were chewing or cold wind. I tried every medication prescribed for TN and had the nastiest side effects possible for each (usually a zombie like existence). Anyway, after starting keto, it was quick (less than 2 days) until the attacks subsided. Every now and then I try to introduce carbs back into my diet, but the symptoms return as quickly as they go away (<1 day). So, now I live on strict keto and rarely eat carbs (<20g/day). I still get twinges and pain (5/10), but noting like before and I think I can live like this forever. It sounds cliche, but strict keto has given me my life back. Also, it is pretty easy to be disciplined when the alternative is excruciating pain. I am a scientist, so it is pretty hard for me to subscribe to non-scientificly rigorous solutions. However, my n=1 study has shown that diet alone can significantly decrease TN symptoms (at least for me). It's definitely worth a try for anyone suffering from this stupid disorder.
Thanks, Micro - great to have finally met someone who has tried it, especially as you have had improvement with it. My TN was related to B12 issues, so that when I got B12 injections I got a period free from pain. Those days are gone now and I have TN all the time, but it is managed by 4-weekly B12 injections and is manageable without meds. I find it very comforting to know that I will have keto as an option if it ever goes back to my pre B12 days (mines was like yours, but more constant) - anything to avoid the zombie (and, for me, drug-induced Lupus) meds!
Morning chancery. No sorry, but I try to keep fit. Although my fitness has gone to the way side due to moving house ect. I’m getting back into it tho. Exercise as you gives you sense of well being and that helps me a lot. Gives your brain a mental boost.
That is something I very much need, Nicola. My difficulty (aside from old age and laziness!) is I manage my TN without meds and it's not a great fan of cold weather or wind or temperature changes, subsequently it kind of puts me off being outdoors more often than it should. But yes, I am the poster child for the ill-effects of not exercising!
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