Hey all, I just wanted to share that a recent diet change I made has helped cut my pain exponentially! I was diagnosed a little over a year ago, I have what I think is bilateral Type I, and I am on tegretol. I hate my medication so I have been trying to find other ways to reduce my pain, rather than take pain meds or increase my current dosage.
So at the beginning of the year I started to phase out dairy and meat. I do eat white fish and greek yogurt, but other than that it is rare that I consume any dairy or meat. Additionally about 2 months ago I cut gluten out of my diet. Obviously, this is a huge change, and it requires enough privilege to spend money on more expensive foods. It also requires that I cook my own food for nearly every meal. But the change had helped dramatically. As another note, when I was first diagnosed I stopped consuming carbonated beverages, caffeine, and anything spicy.
I wonder if any of you have had the same reactions or have tried it? I spoke with my doctor and she said that these inflammatory foods can affect our bodies even if consumed only once per month. So if you are going to make the change you have to do it with intention and commitment.
I hope this is able to help someone! Anything is worth trying for a trial period if it will help reduce the pain. I have only had one episode in the past 50 days!
Hope you are having a beautiful day,
I'm glad for your personal success, EJ. I am also aware that the TN Association has lately been pushing for anti-inflammatory diets along the lines of that recommended by the American Heart Association, as a method for managing TN pain. We've had some rather lively discussions of claims made by television's Dr. Oz along these lines, as well as a book advertised on the TN Association site.
I certainly don't expect the diet you describe to hurt you. Whether it helps you or others, is a matter for time to reveal. At present I know of no controlled/randomized trials which address the use of this diet in managing TN. So please keep your physician informed on what you are doing.
Regards and best,
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Hi EJ. That's fantastic that you've had so much pain relief! I always love to hear that.
I've been an ovo-lacto vegetarian for 20 years now, so I had a good diet before the ATN/TNP even started. I think it's important to maintain as healthy a diet as possible when battling any chronic condition, but I don't feel it's directly helped my pain. I even eliminated caffeine and lowered the dairy intake, but I still didn't feel any change in my pain levels.
I am very interested in hearing about people's experience using a gluten free diet. I've read of so many other people who've gone gluten free and have seen many different benefits in their health. None were related to TN/ATN/TNP, but nonetheless, I find it interesting.
You're right though -- it is an expensive diet/lifestyle to maintain, as well as time consuming. But if it helps, then it's definitely worth it. I look forward to hearing more of your experience as time goes by (if you're willing to share, of course).
Thanks for sharing and I hope your pain control continues.
That’s really interesting and a big commitment, congratulations on deciding to change your diet that way. I’m at a point where I might be willing to try a change in diet. Thanks for sharing your story.
Hi, my Neuro has me on 500mg of Vit. B1, on addition to meds. I have been supplementing that with as much natural Vitamin B1 as I can. Spinach smoothies have been fun. I spoke to someone who improved their pain after doing this for 6 months or so. We shall see! Feel good, everyone!
I have had a signifIcant reduction in my pain in general although not elimination from similar changes, especially the gluten. Now thIs begs the question “did gluten intolerance predispose us to complex pain syndromes?”. Guess there’s no real way to figure out which came 1st. But proof is in the pudding.
LaRae, I see no evidentiary chain between gluten intolerance and predisposition to complex pain syndromes. I've been reading the literature of face pain for over 17 years, and this one sounds like a bit of the hype and nonsense being peddled by people in the so-called "holistic medicine" crowd.
I have not been given any supplements. Are there ones I should be taking. I will try anything to help. I tried to buy Cod liver oil and malt as my mother gave us this when we were younger but as yet my husband has not been able to find it. I only drank water, and soup stock for 3 months and my doctor gave me shakes with some sort of vitamins in them that had 200 calories as I was getting no sustenanace at all. Fortijuice I think it was called. I can now eat mushy food-Toddlers food I call it. I have had to slowly come off tegretol as could not tolerate it even though I got to 800mg though with nausea 12 to 14 hours a day. Am much better on Phenytoin and Baclofen as my head is much clearer,I will start on an alternative to tegretol I think when I come off it. Not sure about that.
The Epley manoevere helped the vertigo, but it does tend to come back. Does anyone else have any ideas on what food to eat. I have advanced from straw to teaspoon.