Hi Cirrus52, would you be willing to post a picture of the bottle of Jarrows B-12 you use, as there are several to choose from.
Thank you, Kari
I also want to Thank You for being willing to share openly with us. I have had TN since August 1998. MVD March 2001 failed, but confirmed I have TN…
I just ordered nerve pain. Nerve renew and hoping will help has b12 vit D and immune products. Some on here take COQ 10 I took that before the hit to my place theat broke nerves it takes so long for them to regenerate my pain med now says help put that insulation around nerve. I’ve had 2 surgeries dr says it takes nerves awhile when a later or work on sinus surgeries. To grow back together. Now I understand why no more surgeries
They think now I have with 7 years no help may be achlasia where only hope is cut the muscle so I can swallow
I just checked my B12 level. It is about 650. The maximum is 1100, so it is normal but in the low range. My pain is minimal after Botox injection in March and subsequently taking nortriptyline for headache for a few weeks. I am planning to take the OTC B12 as recommended by Cirrus 52. Thanks for sharing.
I do find Flexeril, the muscle relaxant, helps. I only took a week, because it made me so sleepy. So the result to my TN was not a big success. Maybe I can try for three weeks when my pain return. I do notice t my tense upper back may cause the pain, but I have not figured out how to relax my back muscle. I am asking for PT, will see if it works. As for the sleeping position, or gesture, would you mind to explain more? What is more helpful?
Thanks
Hi Wulala,
Firstly are you on any prescription or over the counter (OTC) medications for stomach complaints? There are a few reasons why you may have a B12 deficiency but proton pump inhibitors (PPIs) can cause reduced production of stomach acids to break down the B12 and folic acidity levels from the food we eat. Blood tests will confirm results but not necessarily the underlying cause.
(OTC B12 supplements are not as strong as prescribed medications so you may need a booster injection every few months.)
I also have back and neck issues due to posture but mine is caused by keeping my head straight to prevent further pain when I’m symptomatic. This aggravates my SUNCT/TN further. I found acupuncture and cranial massage helped me. However, this would suggest my issue is related more to issues with my Trigeminal Ganglion Region at the back of my head rather than damage to the Trigeminal Nerves at the side of my face or microvascular compressions.
Botox can be used after medications and General/Occipital Nerve Blocks are tried. The Botox will stop your muscle movement and therefore hopefully reducing pain caused by facial movements.
Nope, I do not take anything for my stomach. B12 level 650 is still within normal limit. The doctors usually do something if it is below 400. But I will consider injection if oral OTC does not work.
Like one of the posts mentioned, leaning forward does contribute to headache, so to keep your head straight helps you. That is complete make sense ! I will try to practice that way.
I had one Botox injection as well. It took away the spasm and shock attacks. I took some medication for the dwelling headache afterwords. I am not on any medication now for the TN.
Bests
Did you take shot or oral OTC B12?
Thanks
Hello Wulala,
My apologies for the delay. I take oral OTC B-12 tablets. I am highly allergic to a component in the B-12 shots so I cannot take them, but I found that the oral supplementation has worked very well for me. I take Jarrow’s Methyl-B-12 currently 1 tab per day and I get my B-12 levels checked every few months by my PCP. Ideal for me is in the 900’s, if it’s much higher than that, I get what I call light “warning” stabs. Too low, same thing. I haven’t had a typical TN attack in years, so I am grateful. ALWAYS discuss any medications or plans of treatment with your doctor first (I can’t emphasize this enough!) before taking any supplements suggested by anyone, including me. They know your history and medications and since I don’t, it’s best to be safe and ask your PCP or neurologist first. I do hope that it provides relief for you like it has for me! Best wishes to you!
Dr. Burchiel did my MVD 10+ years ago with partial relief of pain noted. Back in those days he didn’t ask me about B12. However as a vegan for 3+ years I have been using two sprays of B12 SL without having noticed a specific change in my TN personally. I have noticed a lot of people have tried B12 over the years I have been on this site, a few with some relief, whether it was a spontaneous remission or due to B12 I don’t know. But it is worth a try.
Thanks for the tip. Going to buy some and give it a try.
I know this is an old topic, but I haven’t been able to visit for a long time and I think the advice is important. Glad to hear of your success with B12. I’ve been taking it by prescription for many years and my TN is getting worse as the years go on. I need the B12 for other things. My TN is not related to a vitamin deficiency. Good advice for everyone to get their levels checked.
I am so grateful for any information from anyone that can help me with my TN. I have been with this for 13 years, it is totally destroyed my life. It has humbled me to the point where I don’t even know who I am. Thank you. Everyone who has taken the time to give me some information For TN.
Yes remission but not complete but that may be that I’m under terrible stress taking care of my mom and working full time and 1/4 of the farm duties. I do b12 sublingual liquid 2-4 times a day that I started on my own because I can’t get a doctor that cares at all. I also take a b complex and omega complex multivitamin (prenatal but I’m not pregnant, just for the benefit of the omegas and whatever else extra) every day and it has been calmer and less frequent and was gone 3 whole months, but if I miss or stop it’s heck. I also do roobois tea for the less frequent flare ups and chamomile, lemon balm, and valerian teas as well and make sure to eat more nutritious meals with fish and I add nuts to my snacks a couple times a day because I can’t function on drugs. The extra omegas also have made such a great difference also. I noticed once I added the omegas it’s been even less frequent.
