Anyone see Monel Williams on Dr. Oz last week on his MS and TN pain being better controlled?

General General TN & GPN (Old Site)
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Following Montel since he announced he has TN brought on by MS, this show caught my attention. He managed his Montel Williams Show for a very long time using Medical Marijuana along with pharmacological meds for pain and MS symptom management. In his attempt to naturally combat the symptoms of MS and TN (can you imagine???? ugh!), he has always paid close attention to the food intake and nutritious value of foods and supplements. He outlined his regimen he's used for 4.5 months now, and it has been amazing for him.

One of the things he cited was vitamin B-12 shots he takes daily. Years ago, I was prescribed these from a homeopathic doctor and the compounding was done at Lloyds Pharmacy in Portland, OR. It was a fresh compounded Methylcobalamin liquid meant for injection (1mL p/day). It was expensive to buy and have shipped (it must stay refrigerated and only has a shelf life of 30 days), but well worth the cost. After a few months, I went through my mail order pharmacy and they sent cyancobalamin (that sat on a shelf for who knows how long!). It did not do what the Methyl. did for me. I stopped using the injections for shear fatigue of getting shot with a needle. I was interested when Dr. Oz suggested a b-12, b-6, b-3 sub lingual as an alternative. (I think this show can be viewed via the internet, but I'm not certain.)

Has anyone been working on coming up with a food/supplement regimen that has helped them with TN or MS? I'd like to try the things Montel has tried to see if I can dial in a healthy regimen for my journey with TN. It would be nice to have other TN friends join me in this journey. Any takers? Please msg me if interested :-) Many blessings to each of you today!

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I have to qualify my statement above. I would like to try Montel's way of combating MS and TN pain but cannot make the move to Medical Marijuana with children in my home. Although my husband has said that others with nerve pain benefit greatly. He tries to push sometimes, but I have to refuse for this time because of my kids and because I can't make the leap.

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There have been any number of wild and unsupported claims of cure for neurological disorders by advocates for diet or Vitamin B-12. Unfortunately for their arguments, there is next to nothing in published large-scale double-blind trials data. Anecdotal testimony is a very weak form of medical evidence, subject to cherry picking and sometimes outright fraud. But I am frequently apalled by the measures that advocates of so-called "alternative" medicine will go to, to sell their unregulated and unstandardized food supplements.

An additional factor where Dr. Oz is concerned is that several of his critics have published information which indicates that he has personally profited financially from remedies that he has recommended on his television show, but failed to acknowledge to his audience that he has financial interests in the companies he is advertising. That's a clear conflict of interest, even if one ignores the issue of medical ethics involved.

Regards and best

Red

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Hi, Lupa! — I agree with all you've said regarding supplements. And, I too, have tried to avoid/releive pain by careful self-care. Today I've been up on the eliptical 2x, 1.5 hrs total. This is part of my regimen along with the careful food choices.

My neurologist recommended Ginger Root 550 mg and Magnesium 250 mg twice a day for help w/ migraines; Alpha Lipoic Acid â– â– â– â– â– â– â– â–  mg a day for nerve pain. It helps (when I can remember to take them!!). The vitamin b-12 shots were prescribed from a homeopathic doc years ago. I may ask my current pain specialist what his views are on the shots, how often and what amount. These items were all suggested/prescribed with the medications I take in mind. My docs are super careful with me due a bad interaction 5 years ago that put me in the hospital for a week! I could have died.

The main thing that I took from the Montel Williams' change in pain levels he experienced is his juicing with organic fruit, using chloriphil, b vitamins and exercise was what lifted him out of the pain. Funny, Lupa, the recipe for his morning juice is close to a juice I use often at home. My recipe is: (organic) 1 pineapple, 5 apples and 3 cups of baby carrots. This makes enough for the whole family and we drink it w/in 45 minutes to get the most from the fruit. If I am really struggling with pain and need the nutrition (I drink 2 protein shakes p/day to avoid the pain from eating), I will buy the "superfood" green drink from Whole Foods or Freddies organic section. It's a bit more expensive than juicing at home, but one or two 8 ounce glasses will help me to feel better, even if the pain is high. It gives me energy to walk through this pain on my eliptical.

Hi, Red! — Yes, I've listened to your wise words of caution in past posts and agree with all that you've said. I have to say that I've always liked eating nutritionally, but before TN I would eat out more often and not make the high nutritional choices I do now. If there is one good thing that TN has brought into my life, it is a great respect for self-care. I'd like to dial in a regimen that is easy to follow, keeps me on my feet and works well with my system. Thank you for sharing your wisdom with us here. Funny, Montel and the doc were talking about compression shirts, shorts, stockings, wrist and elbow coverings that were not only compression, but had copper in them (oxide, I think). I had to laugh because it looked so much like what you have mentioned. So, it's the general things I take to heart when I listen to his show. And, when listening to Montel now and then as well. I have great respect for his courage to work through this awful pain from MS and TN for as long as he can. Not all of us can do this. I have great respect for those of us who are fellow TN warriors, who by grace and sheer determination, complete each day to the best of their ability.

Blessings to you!

LyndaS

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Thank you, Red, for stating that Dr Oz is indeed in it for financial gain as well as mass information, whether substantiated or not. I like to watch his show for the entertainment factor, but truly cannot take what he says at face value without alot of investigation. I am a nurse, but do not practice anymore; I know medicine, but sure would not attempt to do a procedure on anyone... anywho...thanks Red!

Richard A. "Red" Lawhern said:

There have been any number of wild and unsupported claims of cure for neurological disorders by advocates for diet or Vitamin B-12. Unfortunately for their arguments, there is next to nothing in published large-scale double-blind trials data. Anecdotal testimony is a very weak form of medical evidence, subject to cherry picking and sometimes outright fraud. But I am frequently apalled by the measures that advocates of so-called "alternative" medicine will go to, to sell their unregulated and unstandardized food supplements.

An additional factor where Dr. Oz is concerned is that several of his critics have published information which indicates that he has personally profited financially from remedies that he has recommended on his television show, but failed to acknowledge to his audience that he has financial interests in the companies he is advertising. That's a clear conflict of interest, even if one ignores the issue of medical ethics involved.

Regards and best

Red

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Hello again, Lupa —

Ginger was recommended along with the Magnesium for possible migraine relief. The Alpha Lipoic Acid was for the nerve pain. Honestly, I hate pills and do not take the supplements as prescribed, but do take my medications on time, every time (thanks to Jackie's suggestion here on this site :-). I am starting to log and hope to become used to adding these in to my daily routine. I like the idea of trying to get these nutrients from food, but I'm not sure if it's possible.

You handle being a diabetic with TN symptoms so well, Lupa. You are so young, I'm sorry that you are challenged with this horrible disease on top of Diabetes! You are 10 years younger than I when it came to visit me. (I say visit because I fully intend to see it go one day!!) Do you think you'll be getting a diagnosis soon?

I hated Tegretol as well…I've always been really fast at math and when taking tegretol, I could not even balance my checkbook. The thing that I missed the most when on that med is my mind! ha! Really not a laughing matter, but so true, yes?

I too, would not recommend this TN diet plan…feels too much like a geriatric cuisine! Who knew chewing was such a blessing? So many things I've taken for granted prior to TN, with chewing being one of them. Your trigger of swallowing water would be so hard to manage! I am glad that the meds are helping you.

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Lupa— Thanks for being so candid about this struggle with TN, as well as the diabetes & RLS you are managing. I love the fact that you are taking responsibility for your health…it's very encouraging, Lupa. You are so young to have to deal w/TN…this is the prime of your life. I think it's your attitude that makes it so amazing…RLS, TN and diabetes. Our attitude is the only thing we have a choice in…if we choose to look at the good things, our life is lighter. If all we can see are the harsh realities, it makes it harder.

My conclusion to this TN only coming to visit rather than stay for a lifetime, may be an outright lie to myself. Not completely though, because there IS a POSSIBILITY that remission can come for one day, a month, a year or many, many years. I like to be hopeful and turn my thoughts to being grateful for all I CAN do with this problem…in that I refuse to let it advance and take any more of my precious life.

I'm feeling a LOT of the nerve pain today as the Botox in my scalp is wearing off. Even going up to 2,400 on Neurontin this past 8 days, it still is burning out of control. I'm on the elliptical an hour p/day now…perhaps is should be more? I am glad that this comes in waves and is not a constant high level of pain, just a constant lower level burning with spurts of the flame being raised. How grateful I am for windows of time to a little reprieve, and having friends on this site who KNOW exactly what this feels like.

Take good care, Lupa, and thanks again for being open and candid. You're such a warm soul, it's nice to know you :-)

Sincerely,

LyndaS



Lupa said:

Interesting that you had a similar (brain fog) experience with Tegretol Lynda..My doctor told me that it is usually the first thing prescribed for TN, and considering that information, I'm shocked by how many times I've seen people say they had a horrible experience...It made me feel less of a freak for reacting badly to it, but also upset me to think of others needlessly going through a hellish time like I did when it doesn't work.

I can't complain about being a diabetic, as I'm type 2 and it was self inflicted...I'm working extremely hard on getting myself healthier (I was diagnosed September 2010) so to suddenly wake up with suspected TN after all my hard work was kind of a kick in the teeth...But you move on, and work with what you've got, and I try hard not to panic about what my future might be like, considering this usually happens to people older than I am. Your choice of looking at TN as a visitation rather than a life sentance is very inspiring :)

Curiously enough, in my browsings into supplements and the like I picked up a little tag that was of personal interest...Supposedly the diabetes medication Metformin (which I take) can interfere with the B group of vitamins in the body....And the B group being something that seems to be linked with helping TN...I found that to be an interesting (though whether correct or not I don't know) bit of information. The magnesium seems to have eased my RLS since I've been taking it too, another blessing.

In terms of diagnosis, my GP referred me to an ENT team in November, and I was sent a letter in December advising me that I'd hear from them in 10-12 weeks advising me of an actual appointment, and that it would be some time in the 6 months after that date....So expecting that appointment confirmation any time now. If that turns up no answers she'll refer me to a neurologist I think. Fingers crossed :)

The pain hasn't been severe since early December...After the Tegretol doing not alot and then the Norpress taking a little while to get into my system, November was definately the worst. I got into the habit of logging the jolts, except the clusters which came so fast I just counted the entire episode as one...My worst day, I got up to 152...On the Norpress...I now go days at a time where I don't get even one, provided I'm careful as what I eat now seems to be my main trigger, rather than just the act of eating itself. November, things that set me off: Applying lip balm, rubbing in moisturizer (which is an hourly ritual on account of bad skin) brushing my teeth, flossing my teeth, swirling water around my mouth to rinse, yawning, licking my lips, chewing food, sucking through a straw, sucking in general eg a lozenge, talking, swallowing, smiling, moving my tongue from side to side, and sometimes, no dang reason at all. I developed such a fear of the pain that I would attempt to 'freeze' my face, holding my mouth completely still, not letting my teeth touch together, not moving my tongue, nothing..And they still sometimes happened..Very very gross, but for 9 days when it was that bad, I couldn't brush my teeth and ended up getting thrush on my tongue because the Tegretol seemed to stop me producing saliva. I found that hard, as I'm a habitual twice a day brusher...Thankfully, none of those things seem to cause pain now, except on very rare occasions....I can even chew gum as long as its sugar free and I'm careful - Every so often it'll jolt but they seem to be far less intense and I can deal with them happening. The clusters would crumple me to the floor in silent agony, wanting to scream but too scared to open my mouth :(

I lost so much weight in November because I struggled to even swallow something like broth or a protein shake to keep my strength up, and it's still working to keep my weight in check in it's own way lol, as my biggest food triggers seem to be carbs and sugar (which as a diabetic I'm not supposed to have anyway!)...Bread being the absolute worst. Without fail, a few bites in on something bread-y and I get what I consider a warning shock...And it reminds me to quit eating it!

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Cleo, I've talked with a number of TNA members in recent weeks who have threatened to cut off their financial contributions to the Association unless they wise up and stop sponsoring such quackery. There is absolutely no reliable evidence that a low-carb diet and/or B-12 shots can cure trigeminal pain. However, it turns out that one of Dr. Oz's in-laws is a member of the TNA Board of Directors and therefore in a position to influence their editorial policy. Why nobody in the management recognizes that there is a potential conflict of interest in that relationship, escapes me.

Regards, Red

Cleo said:

I did not see the Dr Oz show last week but i saw this being advertised on TNA email today. A new book featuring an excerpt by Dr Oz.

BARNES & NOBLE | Facing Facial Pain: Your Role in Ending the Pa...

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you have a taker. lets start.lets go slow. i dont wamt to do the wrong thing.

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Richard A. "Red" Lawhern said:

Cleo, I've talked with a number of TNA members in recent weeks who have threatened to cut off their financial contributions to the Association unless they wise up and stop sponsoring such quackery. There is absolutely no reliable evidence that a low-carb diet and/or B-12 shots can cure trigeminal pain. However, it turns out that one of Dr. Oz's in-laws is a member of the TNA Board of Directors and therefore in a position to influence their editorial policy. Why nobody in the management recognizes that there is a potential conflict of interest in that relationship, escapes me.

Regards, Red

Cleo said:

I did not see the Dr Oz show last week but i saw this being advertised on TNA email today. A new book featuring an excerpt by Dr Oz.

BARNES & NOBLE | Facing Facial Pain: Your Role in Ending the Pa...

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Because my TN is possibly caused by general inflammation, I am trying a low carb diet (among the autoimmune things going on, I am developing Type 2 diabetes). I try to remember to make sure I take a multi-B complex vitamin, but after reading your post, I may try the sublingual type. I have slow digestion, and it may go down better. What I have found, surprisingly, is that I am MUCH less brain foggy with this diet. (No starches, mainly meat, veges and a little fruit and Greek yogurt). I don't know that it is doing a thing for my TN, really, though I have improved, but that does not necessarily mean the diet has anything to do with it. My blood sugar swings are better, so maybe some of my general inflammation is better, who knows?

Since part of my gut was rerouted as a baby, and I have a history of gluten sensitivity (I do not eat wheat/gluten), taking a B vitamin is not a weird thing to consider. I AM cautious about alternative meds, which has caused conflict with some family members who use them extensively. But many alternative meds are not properly monitored in general, and certainly not in conjunction with prescription drugs. Additionally, alternative meds ARE still meds, so they are not totally benign. (I think of the big comfrey problem back in the 80's). As for Oz, I don't watch the show. It's too loud and makes me think of The Price Is Right. (And, personally, I find a loud, hucksterish quality about the man)

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I realize this is an old discussion (I was actually doing a search on TV being a trigger when it came up in my search). And i dont pay attention to Montel or Dr OZ (though i sometimes watched his daughter on The Chew until I could no longer watch TV several weeks ago).

But it seems to me that disregarding supplements and vitamins (things that drs arent taught much about anyway) because they dont cure you is silly with this or any chronic disorder. The TN and the meds for it cause other issues (depression, skin issues, malnutrition according to what i have read here and elsewhere online) which you may also be treated for right? If a b12 shot makes you feel better, even if it does nothing for your face pain isnt that a good thing and since so many people on here are saying they cant eat or cant eat a balanced diet i would bet many are b12 deficient especially if they are women (so many women even generally healthy women are, I am) many people are also protein deficient (I am) and the limiting diet i can eat with my face pain i am sure makes this worse. Wouldnt treating the whole body and not just each separate issue be a good thing? You may not agree with Dr OZ in cure or his take on your responsibility for your pain, but if something may help you why not try it. Isnt that why we are all being prescribed these meds that potentially could destroy our livers?

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Rachel, there's nothing inherently wrong with a low-inflammation diet. Such a diet is proposed by no less than the American Heart Association as a positive life style change in lowering cardiac risk. And you'd have to take huge doses of Vitamin B-12 for it to hurt you. But the point that I contest is the notion that B-12 or a low-carb diet can cure or manage TN. There is simply no medically sound evidence for that assertion.

Regards, Red

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I agree that it may not cure or manage TN or many other pain disorders based on my limited research i am just saying that feeling better/healthier elsewhere in your body cant be a bad thing. As someone who feels horrible all the time, anything to relieve that in some way would make my quality of life better.



Richard A. "Red" Lawhern said:

Rachel, there's nothing inherently wrong with a low-inflammation diet. Such a diet is proposed by no less than the American Heart Association as a positive life style change in lowering cardiac risk. And you'd have to take huge doses of Vitamin B-12 for it to hurt you. But the point that I contest is the notion that B-12 or a low-carb diet can cure or manage TN. There is simply no medically sound evidence for that assertion.

Regards, Red

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My 2 cents --- if all else fails - you can put the medical marijuana in edibles -- your kids will not know. Just don't let them have your brownies! Montel was in the military for 22 years - I doubt he took it lightly like becoming a hippie! LOL You research all avenues and keep posting!