Hi, after a long, hard fight I managed to convince my doctor that my TN could be a result of B12 Deficiency. I had what's known as a 'grey zone' B12 blood test results but with no F1 antibodies, so I technically 'can't' have B12 deficiency or Pernicious Anaemia. However, as I proved to my doctor, these tests are notoriously unreliable so he agreed to give me 'loading shots' as if I do have deficiency - the principle being that TN is a symptom of neurological damage and therefore 'proves' deficiency.
What I wondered was have any of you done this? Anyone treated their TN with high dose B12 injections? If so, how long did you do them and what kind of results did you get?
We're aiming for a cure here (!) but even if it just helps with pain control we'll have done well. It has certainly improved unexpected areas of my life, not least bad depression, something I didn't even realise might have been physical rather than psychological, and it seems to be impacting on my mouth pain in unexpected ways, so, so far, it shows surprising promise.
Am I alone in trying this or are there others out there. Anyone??????
Well not just B12, but B complex. It heals nerve endings. (knock on wood) I am in remission at the moment, and when an attack starts, I can quiet it with sublingual (goes under the tongue, it's stronger) B Complex drops or dissolving tablets, and vitamin D. (heals whole nervous system). Occasionally I need Ibuprofen or something, but so far so good with the B Complex and vitramin D. I actually think the remission came from eating hot peppers. It may not work for everyone, but it worked for me. Here's the article that got me to try it:
What type pf pain did you suffer from? Did you have TN or ATN? If I knew hot peppers would send me into remisiion I'd eat alot of them! :))) How long did you have pain? How long have you been pain free? I'm glad it worked for you...
I have had lay-me-out-flat-disabling ATN for 17 years now, but the article where I learned about hot peppers said that substance P, the substance in the brain that senses pain, is often stored in the trigeminal nerve. The hot peppers dissolve the substance P that is stored there. I know it won't work for everyone, because many people eat hot foods every day and still have TN, but I'm just grateful it helps some people. I think adding vitamin B complex (sublingual) and vitamin D added to my success. I have been in remission since February, (9 months) with a few twinges or not-so-bad days. Hoping I don't jinx myself by talking about my success! lol.
Thank you! It is sure worth a try...I love banana peppers and jalapenos..I make jalapeno jelly at christmas time. I take a B complex but am going to switch to a sublingual one.I also started taking Vitamin D..I hope you continue in your remission or better yet it goes away for good..
Hi Sheila, that's interesting that you've found help through sublingual B12. I was looking more for people who might have had medical treatment with the shots, but hey, it's all good. And very interesting about the peppers. I hate food too hot but it might be time to embrace my inner wimp and try something spicier. Do you just chew on a red pepper? That brings tears to my eyes just thinking about it. Are you sure it isn't just because it's numbing your mouth with pain!?
Sheila W. said:
Well not just B12, but B complex. It heals nerve endings. (knock on wood) I am in remission at the moment, and when an attack starts, I can quiet it with sublingual (goes under the tongue, it’s stronger) B Complex drops or dissolving tablets, and vitamin D. (heals whole nervous system). Occasionally I need Ibuprofen or something, but so far so good with the B Complex and vitramin D. I actually think the remission came from eating hot peppers. It may not work for everyone, but it worked for me. Here’s the article that got me to try it:
Hot peppers are painful to me, so I got the weakest peppers there are, pepperoncini, and I had to eat them with yogurt to coat my mouth. The sublingual I took is as strong as a shot because it sinks into the blood vessels under your tongue, but I took B complex. Not just B12. It's was not numbing in any sense of the word, and the pain doesn't go away each time you eat a pepper. You have to take them for a couple of weeks so the capsaicin will dissolve the substance P in the trigeminal nerve. I do wonder if the capsules of hot peppers would do the same thing.
Do they have capsules ? Today at the taco place I added HOT jalapenos to my taco..It was pretty good..And hot..:) I read today that scientists are working on a drug that wil block chronic pain while not blocking acute pain..(I guess we need acute pain to keep ourselves safe LOL)...They stated it works well in mice...Something to look forward to maybe???
Here is the sublilngual vitamin B complex that I use. Sublingual is much stronger than pills with the same dosage. its 1200 mcg (micrograms) or 1.2 mg. http://bit.ly/1al4dmT If you use this code when you are checking out, you get $5 off your first order. ILA180
Hi Sheila, yeah I do know the sublingual drops. While I was waiting for my doc to decide if he would treat me or not I got myself some, same dose as the ones you use. The only trouble with them is they estimate only half the dose is taken up by your body this way, although they may be better than just taking an oral dose, which does have a 50% uptake rate. That's why they use the injections for people who have pernicious anaemia or who are showing neurological damage. If they don't get them loaded up then the damage can be irreversible. There's an added complication in that if you have PA or some other malabsorption problem, your body can't uptake B12 through the gut (or some other mechanism) at all, that being why you got the deficiency in the first place. Tests are a good idea before you start because it is usually too late after you are dosing yourself - it skews the results.
For all I know, the damage already is irreversible with TN and this is bolting the stable door after the horse has bolted, but I have to try.
Definitely going to look into the capsacin thing, but will wait till my B12 treatment is further along; don't want to confuse the issue. Sheila W. said:
Hot peppers are painful to me, so I got the weakest peppers there are, pepperoncini, and I had to eat them with yogurt to coat my mouth. The sublingual I took is as strong as a shot because it sinks into the blood vessels under your tongue, but I took B complex. Not just B12. It's was not numbing in any sense of the word, and the pain doesn't go away each time you eat a pepper. You have to take them for a couple of weeks so the capsaicin will dissolve the substance P in the trigeminal nerve. I do wonder if the capsules of hot peppers would do the same thing.
I'd happily take a drug that blocked all pain, I must confess, and to hell with being safe. Bring it on.
stephanie said:
Do they have capsules ? Today at the taco place I added HOT jalapenos to my taco..It was pretty good..And hot..:) I read today that scientists are working on a drug that wil block chronic pain while not blocking acute pain..(I guess we need acute pain to keep ourselves safe LOL)...They stated it works well in mice...Something to look forward to maybe???
The dosage of the ones I used before the shots is 1200ug, mumto4. But you need to remember the body can't use all that as effectively as it can with an IM injection. They say it may only be able to use 50% or less (it could be more too though, I reckon!)
mumto4 said:
I have never tried the shots, but boy do they sound interesting!
To those who take B12/B complex, what is the dosage on these? Thanks
These are much cheaper than we pay for them in the UK, Sheila. Ah, when it comes to OTC 'drugs' I always wish I was in the US. I paid the equivalent of $16 - 18 dollars for mine, and that was very reasonable!
Sheila W. said:
Here is the sublilngual vitamin B complex that I use. Sublingual is much stronger than pills with the same dosage. its 1200 mcg (micrograms) or 1.2 mg. http://bit.ly/1al4dmT If you use this code when you are checking out, you get $5 off your first order. ILA180
Women with the electric teeth: That website ships world wide. I'm in Canada and the price locally would be about the same as what you pay in UK. I have to pay shipping and "duty to the Queen" (you know) and STILL it's cheaper than when I buy locally. I do buy many supplements at once to justify the duty though.
Woman with the electric teeth said:
These are much cheaper than we pay for them in the UK, Sheila. Ah, when it comes to OTC 'drugs' I always wish I was in the US. I paid the equivalent of $16 - 18 dollars for mine, and that was very reasonable!
Hi Sheila, I thought that was great news till I checked out the postage and discovered that I'd not only be paying plenty there, which I expected, but I would also be adding on VAT, customs duty and then the £8 charge that our now sadly crooked Royal Mail charges. By the time I've added that lot up all the great gains have not only been lost but are generously exceeded, making the discounted drops MORE expensive than buying them from an exorbitant health food shop here. Sigh.......
Sheila W. said:
Women with the electric teeth:
That website ships world wide. I'm in Canada and the price locally would be about the same as what you pay in UK. I have to pay shipping and "duty to the Queen" (you know) and STILL it's cheaper than when I buy locally. I do buy many supplements at once to justify the duty though.
Woman with the electric teeth said:
These are much cheaper than we pay for them in the UK, Sheila. Ah, when it comes to OTC 'drugs' I always wish I was in the US. I paid the equivalent of $16 - 18 dollars for mine, and that was very reasonable!