Just curious if there are any known diets recommendations for TN sufferers or anything that we should specifically avoid. I just started a gluten-free diet and I definitely have more energy but don't notice a difference in my pain levels yet (it's only been 2 weeks, though).
Thanks in advance for your answers. Hope this is a good day for each of you. :)
The only professional that addressed foods to avoid was my acupuncturist. He said to avoid red meat and white sugar. I try, but not to the point where I can say it's gone off the menu forever. Partially due to the fact that I crave beef tacos once a month. I hated meat as a child, and rarely had it when I lived with my biological mom, but when we did I refrained. Except in the case of spaghetti! Now that food, made by Italian hands was/is amazing! The pork, red meat, beet bone (sometimes) in a yummy sauce that cooks all day(!) in the crock pot. Add some ale dente whole wheat noodles and you're set! (I guess you'd have to find gluten free noodles :-)
Tell me, though, with the gluten free diet, are you noticing any weight loss? It's so hard to manage the weight when the meds seem to slow our metabolism even if we can exercise regularly. What a job we have before us, Vicki!
I have eaten gluten free for over a year now so can't comment about pain with the diet because my pain started after I went gluten free. I have read on the internet about low saturated fat diets for TN and wonder if these make any difference at all.
:Although, I’m new here, I’ve been dealing w/the pain almost 20 years. About 5-6 years ago the pain became almost constant w/occassional sharp, ice pick stabbing lasting seconds to a couple of minutes around my right eye, cheek bone, inside &behind right ear. 4 years ago neurologist dx atypical TN & started me on Lyrica. Thought it was a miracle drug until almost a year later when side effects hit & and stronger doses were needed to keep pain at bay. At that time I was dealing w/very serious bowel problems & and looking at my 8th bowel surgery for obstructions. For about 3 months I lived on applesauce, yogurt, bananas, eggs, small amounts of chicken, green beans, asparagus. As I was healing from surgery & and still eating the sameway I realized TN pain has subsided. About that time I read about the saturated fat link and discovered if I kept my level below 12 grams a day I only had occassional pain when eating more.
So for almost 3 years I’ve been controlling the pain that way w/vicodin as back. Moving forward to February…attack of Bell’s palsy on my left side affecting my eye, mouth & numb tongue. Along w/ it constant pain and throbbing w/those burning, stabbing pain near eye and pain in lower jaw, cheekbone. And a migraine dx. As I still watch my saturated fat content it has had no effect on the left side & am beginning to get twinges on the right side. So I do believe it may be worth a try. Stress level has been high, stress at work, spouses job loss & subsequent cancer dx. Extreme mecical bills, stress does make it worse. Tomorrow will get report of latest MRI. Do have a parotid gland cyst which primary, ENT, and dentist doesn’t feel is the culprit. Just hoping for rx to help control it. I bave to work so I need something to help dull the pain. Next step is headache & facia, pain clinic ar the University of michigan or Henry Ford. Primary & dentist recommendation.
Inconclusion I believe there may be somethi it to lowering saturated fat. It’s not easy to follow, but no side effects are worth it. Also I been gluten free fo about 6-7 years and I never observed it helping the TN. Hope this post answers some answers. Hoping for some answers from the MRI, Good night & sorry about the long post
Wow! I hope you can get some relief. Thanks for the info on the low fat diet. Have you tried a chiropractor for the Bells Palsy, I know they helped a co-worker get over hers in just a matter of weeks, though I have not had much success with mine for the TN pain.
No have not tried chiropractic. New primary doc of less than 3 years & I have agreed to seek treatment at the University of Michigan for TN/facial pain/palsy. So am starting that process today. Any ways, still feel the low saturated fat diet has some merit. As mentioned in my post above, I felt relief after being put on a diet that limited saturated fats, before I read about the connection. Still feel it is worth a try. Fairly safe and it is a healthy diet when one cuts the saturated fats.
Bullitbaby said:
Wow! I hope you can get some relief. Thanks for the info on the low fat diet. Have you tried a chiropractor for the Bells Palsy, I know they helped a co-worker get over hers in just a matter of weeks, though I have not had much success with mine for the TN pain.
I went on a stricked diet,removing wheat products.To loose 10 stone.It worked.But it took 3yrs.Removing wheat gave me a sensativity to it.I do not recommend anyone stop wheat totally as life is a pain as lots and lots foods have wheat.Same thing with eggs.It's a nightmare.So I have not had gluten for aroung 13 yrs and I still have TN.I do not eat red meat.I have a low fat diet and my colesterol is 3.Make your own minds up on that one.
When I learnt that I have TMJ disorder I started looking for ways how to improve my condition and changing my diet was one of them. I found some inspiration on the Earth Clinic website; it's run by people who are not health professionals, rather people who had bad experience with conventional medicine or are into natural remedies. So I started including loads of veggies with high magnesium and vitamin B content into my diet. I noticed that while it did not ease the pain in my bones much (I have misplaced jaw discs so wearing a splint + excercise or surgery are the option rather than changing my diet:)), the sometimes severe pain around my lower jaw where I had root canals done was a lot less. I was on a sick-leave for over a month and during that time I would treat myself to fresh juices and would generally eat healthy diet (I also replaced my usual 2-3 cups of coffee by herbal tea, which seemed to work well). Now I'm back at work and back to my old eating habits and the pain seems to be worse. So I conclude there may be a connection. Generally, coffee, black tea, chocolate, white sugar... stuff that stimulates the nerves is not recommended, but it may not be the same for everyone. Take care:)
Vicki, I think there are some benefits from certain diets. As Nancy stated gluten free is one way to reduce inflammation in your body. Though it may not help with TN. Crystalv's advice is spot on about a healthy diet or as I like to say, lifestyle. I have been eating organic as much as I can for almost 33yrs. I avoid processed foods as much as I can. I make my own meals for work and take a half a day out of the week to cook for me and the wife "the wife is the one who suffers from TN"
My wife and I have been on the Paleolithic lifestyle about 80% of the time. There are many benefits to eating this way. It is gluten free and is good for people like me with type 2 diabetes. We both have lost some weight, which made her very happy, I can not directly connect eating this way with reducing the symptoms you are feeling from TN. My wife still has attacks and they are worse around the time she has her cycles, but over all she feels better eating this way. She has started to exercise with me and that seems to help her emotionally when she has the minor symptoms. She went from weighing about 140lbs to 120lbs in 3 months just eating the Paleo/Caveman way 80/20. Her blood work was better also after the 3mo period as far as her hormones and cholesterol leveling out. My A1C numbers went from 6.2 to 5.1 in 40 months, which is good. I have included some links to read more about it along with some recopies. Marks Daily Apple has some good information about a healthy eating lifestyle.
Cara has mentioned the low saturated diet here; I've been searching the internet for TN diet recommendations and came across Dr. Sherwood's site, where he says that eating under 10g of saturated fat a day may be beneficial. Here's a link for a presentation he gave regarding his findings: http://www.franksherwood.com/mytalk.htm . If someone decides to give the diet a try, please share your experience.
Scour the book "Striking Back" for TN -- it is our bible and has many natural suggestions for stress and pain control
One issue is to possibly up your B-12..... but there are hundreds of suggestions in that book --- my surgeon wrote it along with a patient --- it's a must have!
found this site for when you hurt and cant eat. there is an area to the right where you pick the ingred you like and it comes up with a healthy green shake
Hello! I was wondering who the author was for the book "Striking Back" for TN ? I'm looking for it
Kc Dancer Kc said:
Scour the book "Striking Back" for TN -- it is our bible and has many natural suggestions for stress and pain control
One issue is to possibly up your B-12..... but there are hundreds of suggestions in that book --- my surgeon wrote it along with a patient --- it's a must have!
George Weigel and Kenneth Casey misswolfqueen2000 said:
Hello! I was wondering who the author was for the book "Striking Back" for TN ? I'm looking for it
Kc Dancer Kc said:
Scour the book "Striking Back" for TN -- it is our bible and has many natural suggestions for stress and pain control
One issue is to possibly up your B-12..... but there are hundreds of suggestions in that book --- my surgeon wrote it along with a patient --- it's a must have!
Personally I don't understand anyone not considering their diet in the face of any illness: TN to diabetes to cancer. After all every cell in our bodies is made up of what we or our mother ate. Some folk mention genetics, but you still need a trigger, possibly trauma/ stress/ diet poor lifestyle smoking/drinking etc. Diet makes us, diet can potentially cure, Depending how much you have thrown at it time is going to vary. TN, on the whole is going to be affected by what we stick in in our mouths. Regardless of what we consider the cause, inflammation is a factor, which is influenced by what we eat. This can be observed in say back pain, near identicle Xrays/scans totally different symptom patterns in different patients, Anyone with any illness should be advised to look at their diet/ lifestyle. Visit your doc, how many hours of nutrition training, compared to pharma? For Illness look to follow the packet in diet. Anything in a packet give it a miss, in order to get enough calories in you you will be approximately hitting a good diet, or at least compared to western standards. Avoid too many carbs and modern grains, but then if avoiding the packet you should be.
What do you mean by “packet?” Not familiar woth that word in conjunction with diets/food.
Maybe the UK is more advanced in dietary knowledge, but the idea of imflammatory foods has not gained mainstream knowledge here.
I specifically asked my neuro about this and he poo-pooed the idea. At the time I was seeing a doctor who thought I had a high sensitivity to inflammatory foods. Too bad that I became extremely ill for what the dcotlr did to me.
I agree someone is wearing the mylon around the nerve. Stress, enviornmentol factors---- who knows. For myself I have a hypothesis-- I have lived under an incredible amount of stress for the last 10 years where my body has lived in a constant fight or flight state. My muscles are rigid, ropey and stiff from this. I am right now in intense therapy to break this and am treatinn my adreanal glands. I will be interested to see what it does to my body and TN after.
But no I don't think the UK advanced, avoid avoid anything in a packet, tins less so bad or not at all. Ask a regular medic about diet, and when he poo-poos the idea ask him how much nutritional time didi he experience at med school. I think the response would be circa two hours give or take, 15 hours would not be enough, which makes my comment of the packet in diet sound flippant. In a nutshell , in a sentence as far as diet is concerned you won't get better advice, although I am willing to listen to better ideas.
As for flight and fight state it is in my opinion the worst thing that activates illness. Without it I wouldn't have a job, as regardless of the presenting complaint without stress/tension/diet I feel it it would not come to light, hence not enough people in the door to make a living. Unlike years ago, running from Sabir tooth lion etc, we can't run we have other responsibilities,or we face the same tiger in our jobs or work which are there tomorrow, and hence we experience the same initial physiological response as we would years ago but with no outlet, and hence hormonal metabolic dysruption and its consequences. If one is experiencing stress, treatment of any kind may empty part of the glass temporarily until you refill as modern constraints mean it is harder to run, and the stress is still there. Work. money and spouse/ relationships are potentially the main source of stress, and with it its main restraints/ anchor, and a precipitating/ maintaining factor of diet. Not saying I'm right but without it I believe I wouldn't have a job. (physical therapist)
I experienced relentless TN 1 pain for 9 solid months before my successful MVD 2 years ago. Well before TN fell in my lap, I became a vegetarian and hadn't had red meat in more than a decade. I also ate and still eat a low-fat diet, very little sugar, and lots of fresh veggies & beans/lentils. That's the way I ate before TN and the way I ate during my TN and there was no change whatsoever to my pain levels. The only thing that managed it somewhat were high doses first of Trileptal and then when I maxed out on that, Tegretol XR. I do supplement with B12 as well and had my doctor check my levels while I had symptoms and my B12 levels were very high, really a little too high she said.
I have to add that although my healthy diet did nothing to help my TN pain, it did help me in my MVD surgery recovery. I really had a fairly easy time recovering (after the first 24 hours of nausea). I didn't even have constipation with the pain meds. I knew that a healthy diet would help me get through that so I tweaked it even more, adding in Omega 3 supplements and other strategies to do all that I could to reduce inflammation the weeks before surgery.
I could not agree more! But there are definitely those people out there. Sadly, my dad is one of them. He has had a myriad of health issues for many years (though not TN), including unstable blood pressure, high cholesterol, borderline blood sugar levels, allergies, and obesity. In 2009, he was diagnosed with Mysthenia Gravis (an autoimmune disease that affects the way the muscles work, including those of the face, though it doesn't cause pain). In June, he was diagnosed with cancer in the lymph nodes in his neck as a secondary cancer to the skin cancer he's had for 20 years. He went through surgery where they removed the nodes and saliva glands on the right side of his neck and shoulder. He just finished a round of radiation therapy, which they hope cleared the cancer cells completely. He is recovering now with a host of awful side effects and permanent damage (like slight paralysis in his face and dry mouth).
After all of this, do you think he changed his lifestyle one iota? Nope! He still eats horribly, still doesn't exercise, still allows anxiety and stress to rule his life. It's very sad. The only thing that has really changed is that the radiation treatments took away his appetite so he's been eating less food only because of that. But that's not by choice and don't think he won't dive for the steaks and ice cream and cream cakes the moment he gets his appetite back.
Tam
aiculsamoth said:
Personally I don't understand anyone not considering their diet in the face of any illness: TN to diabetes to cancer. After all every cell in our bodies is made up of what we or our mother ate. Some folk mention genetics, but you still need a trigger, possibly trauma/ stress/ diet poor lifestyle smoking/drinking etc. Diet makes us, diet can potentially cure, Depending how much you have thrown at it time is going to vary. TN, on the whole is going to be affected by what we stick in in our mouths. Regardless of what we consider the cause, inflammation is a factor, which is influenced by what we eat. This can be observed in say back pain, near identicle Xrays/scans totally different symptom patterns in different patients, Anyone with any illness should be advised to look at their diet/ lifestyle. Visit your doc, how many hours of nutrition training, compared to pharma? For Illness look to follow the packet in diet. Anything in a packet give it a miss, in order to get enough calories in you you will be approximately hitting a good diet, or at least compared to western standards. Avoid too many carbs and modern grains, but then if avoiding the packet you should be.