Hi all, Food for thought...no pun intended :) I am not sure if this was ever discussed here but I am so excited I wanted to share this with you. WARNING: I am not a dr. do not try this unless approved by your dr. I didn't but thought I should warn you anyway!
Yesterday I read an article in a local healthfood store publication and it solidified something I had just stubbled upon af ter a round of antibiotics. (Yeast, yuck) More on the article in a minute.
My exprience:
In order to get my body back into balance after antibiotics, I needed to reach for Monistat. Monistat increases tegretol effects. I reduced my daily amount of Teg. by 100mg to make up for this.
I also cut out all sugar and wheat to further assist in the killing of the abundance of yeast. ( Hate that topic). One week later I was planning to increase Teg but felt that the pain was ok...just wait.... based on past experience I would need to increase soon as my cycle usually sent my pain into a feverish tail spin. The pain never increased. Hum! Interesting! No increase in pain when my cycle hit. Odd! Cool!!!! Maybe the pain increasing during my cycle was due to my cravings and indulgence of Chocolate and Carbs!!!! Something I was no longer eating! :( I understand that I am not the only one who also treats myself to chocolate after a painful attack too! (you know who you are ;) ) (I do miss them, but less drug the better)
The Article:
In the 1920's children who suffered from epilepsy were put on a ketogenic diet (anti seizure drugs not available yet) it reduced the occurance from 30 - 90%. (Ketogenic diet restricts gluten and refined sugars. ) Then the drug was introduced and many kids abandoned the diet for the drug...but some kids were sensitive to the drug ( as many of us are) so remained on the diet to control their seizures very effectively.
I figure that if the diet can replace the drug for seizures why not to replace(reduce) the (seizure)drug for us!!!!! Diet is just a drug anyway isn't it? Diet causes less inflammation. Gluten free diets also free many people with Fibromyalgia pain. Huh!?
I have not finished my research into the long term use of this diet...but it has got to be better than the long term use of toxic tegretol and others.
I have been eating a gluten, sugar free diet for a month now and feel much better taking less Teg. I am thinking about reducing it further. I am on a high dose (1100mg) ...but perhaps if this does work...people on minimal doses can eliminate the drugs all together.
I hope that this makes some sense just gives us another clue into TN, out bodies and the crazy drugs we are on.
Please ingnore the spelling/grammar errors ...we need spell check here.
Thanks for the information. I have to tell you that I do notice I seem to feel better when I don’t eat pasta for an extended period and then feel worse when I do. I think you may be on to something. I don’t think it is enough for me to adjust my meds but mine aren’t really controlling mine at the moment. Please keep us updated of your findings.
Thanks Debbie for taking the time to reply...it is very interesting find, the pasta connection. I can say it is hard to go gluten free....but i have tried to cheat over the last few days and have had instant pain in my mouth.....hard to ignore it. Finding things to eat while my family feasts of gluten is hard too. Oh well, i keep trying. I hope you are able to find some relief from your pain. <Hugs>
Check out this site. They sell sprouted pasta and breads. I have never tried it but know of someone who uses it all of the time. In fact, she dries the bread and puts it in the food processor for bread crumbs. Anyway, thought you might be interested.
i did a gluten free diet for almost 2 yrs, and yes it is VERY hard! much easier now then what it was then. more options! if you want some tips or food listings just let me know.
my question is the sugar, what form are you cutting out? just like raw sugar. are you using the sugar substitutes like Honey or agave nectar?
Erin yes I ve tried this and yes Im no Doctor So ask your Doctor? I was told from a Doctor If I wanted to feel Better pretty much to try the diet No-Surgay No-Gluten = Less Pain. I did feel better and my energey did improve . and Yes I went back to eating these food's .Although I try not to eat as much.Because any thing that can help with migraines or in inflamation is of great help. I started juicing aboute a month ago vegetable's and fruit's not seen much of a energey change ,but can say it taste really good .I have some thing freshley juiced each day.It's easy because It taste good. need to go back to doing other diet to Because relief of inflamation or energey or for that matter any change is worth doing it again.I get Tired no energey inflamation pain every day any thing that can help is worth a try, Thank's for sharing, Prayer's Sent Shirley
I wonder how Erin is doing now? Anyone know? I was trying to find research to see if there was a sugar link somewhere and googled and this is one thing that popped up... interesting.
Hi Lisa, I am doing fine. Thanks for asking. My Mvd 7 months ago was a god send. I was symptom free for four months and now just a lot of tinggling. I do believe still that the sugar does increase the pain for me. As does stress. I try to keep my sugar down and limit my white bread etc. TN got much worse prior to surgery hense the decision to go ahead with it. I wish diet alone could have helped. Perhaps for some it will help. I wish you luck in your research and if you have any question for me. Please feel free to ask. Health and happiness to you and all other members.
Lisa (iamrite) said:
I wonder how Erin is doing now? Anyone know? I was trying to find research to see if there was a sugar link somewhere and googled and this is one thing that popped up... interesting.
Thanks Erin! I was just wondering because the last 5 attacks came directly after eating something EXTREMELY high in sugar. Which made me wonder if sugar itself was a trigger or could be a trigger. I have no problems giving it up at all. Anyone, just trying to figure all this stuff out as I highly doubt I am a candidate for the surgery. I think I read somewhere that ATN is typically not treated with it. Gotta figure out how to get rid of obvious triggers. :)
Actually, I started a low carb, more ketogenic diet a few weeks back. Other than the tomato seed episode, I have been doing better. I figured, like Erin, that since they treat epilepsy with it, and since they are doing some studies for other neurologic disorders and getting interesting, if not conclusive results, that I might as well give it a go. It should help keep my blood sugars from creeping into the full blown diabetes range. I've been gluten free for years now, but gluten free does not necessarily mean carb free, or low carb, rather. At least not for me.I'm a potato-holic.
So far what I have read about a ketogenic/low carb diet is promising for general health, but I am still reading, too.I am so interested to know the sugar thing is not just me. I know that sugar excites the nervous system (not sure if that is exactly how it works, but it is like some flavors and spices that do the same thing), but I was not sure what other mechanisms make it a trigger. Anyway, I'm reading Gary Taubes books right now, and am trying to be my own guinea pig.
Wow,just came to the possibility that white sugar is my biggest trigger too. Did some research and it turns out that sugar is processed with Sulfur Dioxide…which is apparently the precursor to sulphuric acid! Well,no wonder it would cause inflammation. It is interesting to learn other people have reached a similar conclusion.
I went on this type of diet for prediabetes. I do feel better all around, but I don't know if it is due to less overall inflammation, or if the meds I am taking kicked in enough to make a difference. I don't want to draw a direct conclusion between diet and TN when there is no way to measure or track it. However, as someone pointed out, if we eat in a way that generally makes us feel better, then that is less misery in general, and it can only help. (A very loose paraphrase on my part)
I took wheat out of my diet completly 10yrs ago.Restricted suger intake and red meat to very small amounts.Red meat to nil.I can promice all that it had NO effect on the pain in my face.
It did how ever make me intolarent.So I can't eat it at all now.So DO NOT take it out of your diet compleatly or you'll probably have the same problem.
I feel generally unwell all over if I eat gluten or wheat.If I eat a couple of day in a row I get quite unwell.
Whilst I cannot medically comment on the ketogenic diet, I can tell you that I have a colleague with a severely medically challenged brother, epilepsy is one of his major problems. He has it so bad he has to wear a head guard during his non sleeping hours. His Dr’s recommended he try the diet, his family have found this very difficult as he lacks the ability to understand why he cannot eat the foods he aways has and now has to eat before the family as he wants their food. It has made no difference at all in six months.
I agree with Karen, eliminating foods can cause problems in the long term and may not help in any way.
I took gluten out of my diet because I was already intolerant, as are my son and sister. I am not sure I would have voluntarily done it on a lark. It's not exactly a fun diet to be on, though, as has been said, it's better than it was when I first went on it years ago. However, it should be noted that many people show signs of intolerance early on with gastro symptoms, improve after or around adolescence w/o diet change, then may show up again in their middle years, especially women. At least this is what I read in some of the medical journals when I was doing a paper for college a few years ago. The medical world didn't seem to know why. Perhaps those pesky hormones? Some of my symptoms are not gastro but do involve a headache. It feels different, though, than the TN. I've gone on and off enough times, hoping against hope, that it really is not the gluten, but it is.
Suger gives me a headache.LOL.I'm just worried that someone might end up in the same boat as me.Your right it is not a fun diet AT ALL. I can't find any indecation of a link to suger or gluten and TN.
I do tolerate a small amout of wheat once or twice a week now in the hope that it keeps me from getting any more sensative to it.To aviod an illergic reaction.
But definatly the long term effects of removing certain foods from you diet (unless essencial)are not worth it.
Hiya I have constant friction of my nerve by a structure, but I also have arterial looping and this impacts on the trigeminal nerve too. I have had trigeminal neuralgia for 20yrs now. I have had MVD surgery and the structurehas bbeen cut back, but still a lot of pain. I do now think I have an answer for myself how food effects me. Gluten is inflammatory by nature, if you have friction of the trigeminal nerve, themmyelin sheaf will be worn away and gluten slows down the healing and inflames the area. Foods high in saturated fat have the same effect. There is a low saturated fat diet for trigeminal. You should have a maximum of 10gramms of saturated fat a day. This is very beneficial, not just the healing of the nerve, but your body is more capable of coping. Any foods that are vascular reactive, eg make the arteries and veins flaxuate in width, which will cause friction and impact thennerve should be avoided. Chocolate does this, citrus fruits do this and salt, that’s why people have headaches after chocolates. I think vascular dilating foods, high in magnesium might work for some cause it causes less fluctuation in the width of blood vessels. I find food that constricts blood vessels help me. I drink about 7cups of coffee a day now and this helps me because it’s a vascular constrictor, this goes against the advice for trigeminal I know, but it works for me, others it might make it worse. You have caffeine in a lot of headache medication cause migraines are caused by vascular dilation. I will always try to eat anti inflammatory foods. There’s a great site called Whfoods. They list all the foods that are healthy and anti inflammatory. Lots of omega 3 help the nerve repair, I think diet has an huge influence on how your body deals with trigeminal neuralgia, not a cure, but an optimisation. I’m sorry about the typing. I’m using a phone. This is just my experience. Hope some of my experiences help. Melanie
