B12 shots

General General TN & GPN (Old Site)
1

Hi everyone and thanks for all the vital information in these discussions and on the website. It's led to me discovering B12 shots as a possible help. I've asked my doctor about it and he's agreed to administer the shots, he's just not sure what the course of treatment should be - I recall seeing somewhere here that a member's successful course started with a shot a day for a week, then three shots a week, but I don't recall how much longer that was for and now I can't find the reference. I was hoping someone might be able to offer a suggestion.

I'm also on Lyrica, have been for 18 months (75mg morning, 150mg at night) after neuralgia recurred - previously put into remission by two years of Tegretol eight years ago. As many will understand, I'm keen to be off the drugs again!

Thanks in advance to anyone who has a moment to help on this.

Natasha :)

2

Hello Natasha,

I am B12 deficient. This was discovered many years before TN kicked in. At the very beginning I got one shot of B12 (Hydrocobamine) once a week and after about a few weeks this became once a month. A few years later, when I allready learned to put in an injection myself and TN was bullying me for a few years, I decided (after reading a LOT!) to go back to once a week and replace Hydrocobamin for Methylcobalamin. Make shure you get enough other B-vites too, they all work together.

Whatever you do, keep yourself informed, also on this forum (search on B12) and the www. Also try find a doc who understands this subject (many don't).

All the best and questions allowed ;-)

Ellis.

3

Dear Natasha:

I have had TN for 9 years. I still have not had any of the surgeries they recommend, but have been on Tegretol and am still on it. I try to lower the dosage during the year as much as possible,but have seen it flairs up more in the fall.

B12 shots helped me for about 1 1/2 years and then they stopped helping me. I took 2 a week, for that period of time. I noticed that some medicine and chemicals taken by prescription, seemed to stop the B12 from helping, so be alert to this.

Doctors I found, are not keen on B12. They want to see a shortage of B12 in your system and they don't understand that B12 shortages are not the cause of TN but can reduce or eliminate the shocks. I have not found a doctor who understands this yet.

Upper Cervical Chiropractic care has helped me lower my TN shocks and symptoms for 2 years; but guess what? yes certain chemicals and drugs can seem to interact and stop this from working effectively too. Why? Because certain drugs and chemicals can cause the atlas bone to move out of alignment, and when the atlas bone in your head/neck is not straight, it presses on other nerves and the TN nerve.

I have also experienced that drugs and chemicals can reduce the effectiveness of homeopathic remedies that help for a short time as well.

My answer to you is try some of this; be aware of things that work and when they stop working. I found a certain high blood pressure med seemed to increase my TN. Crazy? Yes, but my new doctor is very supporting about this. And there are many blood pressure meds out there, so I do not have to rely on one which increases my shocks.

hope this helps. I am thinking of Gamma Knife now and researching it. I have heard it can remove symptoms for up to 3-5 years, so maybe worth a try. I don't know.

Also, I have been on low doses of Tegretol for 2 years. Before I found the chiropractor, I was on 1600 mg of Tegretol and shocks were about 12 a day. IT went down to half that dose, for about a year with the chiropractic treatment, but went up when I took an alternative remedy for arthritis. Now that that remedy is out of my system I am going to try to lower the Tegretol.

I keep trying. Homeopathic remedies worked for me for about 6 months. Maybe I didn't dose right, I don't know.

Chiropractic, reduces the pain for the longest time. But don't believe the claims that it reduces the pain in a few weeks. It takes about 3-6 months, and then maintenance.

I couldn't find Gabapentin helping me at all. (bummer) I have not tried Lyrica.

4

Huge thanks Ellis - so Methylcobalamin worked for you? Are you still taking doses monthly?

It is hard to find a doctor - or a specialist for that matter - who understands neuralgia. My doctor had never even heard of B12 treatments, hence my question on what dose to use - I'm advising him!

Ellis said:

Hello Natasha,

I am B12 deficient. This was discovered many years before TN kicked in. At the very beginning I got one shot of B12 (Hydrocobamine) once a week and after about a few weeks this became once a month. A few years later, when I allready learned to put in an injection myself and TN was bullying me for a few years, I decided (after reading a LOT!) to go back to once a week and replace Hydrocobamin for Methylcobalamin. Make shure you get enough other B-vites too, they all work together.

Whatever you do, keep yourself informed, also on this forum (search on B12) and the www. Also try find a doc who understands this subject (many don't).

All the best and questions allowed ;-)

Ellis.

5

Thanks for this. I tried chiro a few times and it made it immensely worse, so I've given up on that for now. So it's safe to stop drugs and try the B12? This is what worries me - every time I try to reduce the dose my neuralgia goes wild and takes months to get vaguely back under control again, so I'm hesitant to stop, but if it will interfere with B12 then I definitely will.

teacher said:

Dear Natasha:

I have had TN for 9 years. I still have not had any of the surgeries they recommend, but have been on Tegretol and am still on it. I try to lower the dosage during the year as much as possible,but have seen it flairs up more in the fall.

B12 shots helped me for about 1 1/2 years and then they stopped helping me. I took 2 a week, for that period of time. I noticed that some medicine and chemicals taken by prescription, seemed to stop the B12 from helping, so be alert to this.

Doctors I found, are not keen on B12. They want to see a shortage of B12 in your system and they don't understand that B12 shortages are not the cause of TN but can reduce or eliminate the shocks. I have not found a doctor who understands this yet.

Upper Cervical Chiropractic care has helped me lower my TN shocks and symptoms for 2 years; but guess what? yes certain chemicals and drugs can seem to interact and stop this from working effectively too. Why? Because certain drugs and chemicals can cause the atlas bone to move out of alignment, and when the atlas bone in your head/neck is not straight, it presses on other nerves and the TN nerve.

I have also experienced that drugs and chemicals can reduce the effectiveness of homeopathic remedies that help for a short time as well.

My answer to you is try some of this; be aware of things that work and when they stop working. I found a certain high blood pressure med seemed to increase my TN. Crazy? Yes, but my new doctor is very supporting about this. And there are many blood pressure meds out there, so I do not have to rely on one which increases my shocks.

hope this helps. I am thinking of Gamma Knife now and researching it. I have heard it can remove symptoms for up to 3-5 years, so maybe worth a try. I don't know.

Also, I have been on low doses of Tegretol for 2 years. Before I found the chiropractor, I was on 1600 mg of Tegretol and shocks were about 12 a day. IT went down to half that dose, for about a year with the chiropractic treatment, but went up when I took an alternative remedy for arthritis. Now that that remedy is out of my system I am going to try to lower the Tegretol.

I keep trying. Homeopathic remedies worked for me for about 6 months. Maybe I didn't dose right, I don't know.

Chiropractic, reduces the pain for the longest time. But don't believe the claims that it reduces the pain in a few weeks. It takes about 3-6 months, and then maintenance.

I couldn't find Gabapentin helping me at all. (bummer) I have not tried Lyrica.

6

Hi Natasha,

When I started the weekly methylcobamin a few years ago (and I still do), doesn't mean I don't have TN anymore (sadly I do) or that I'm not b12 deficient anymore. I was very low on b12 when they found out I was deficient. I can't absorb b12 the normal way, so that's why I have to take shots.

I want to take care of my nerves as good as I can to limit any (further) damage. That's why I switched from Hydrocobamin to Methylcobamin (more workable for the body) and take the shots weekly again (instaid of once a month).

Do not stop in any way with your meds without consulting your doc. It is important to keep levels steady at the point where they work for you. Fluctuation can be a trigger on itself.

I haven't experienced any interaction with the b12 and my meds. I am on Tegretol and Gabapentin.

Don't stop or start with anything just like that. With having TN we must constantly think very, very carefully about every step we make, although it's hard to think when your in hell and sometimes we can't think at all.

Ellis.

7

Great, thanks Ellis. You've been a great help and I hope remission is yours soon....

Ellis said:

Hi Natasha,

When I started the weekly methylcobamin a few years ago (and I still do), doesn't mean I don't have TN anymore (sadly I do) or that I'm not b12 deficient anymore. I was very low on b12 when they found out I was deficient. I can't absorb b12 the normal way, so that's why I have to take shots.

I want to take care of my nerves as good as I can to limit any (further) damage. That's why I switched from Hydrocobamin to Methylcobamin (more workable for the body) and take the shots weekly again (instaid of once a month).

Do not stop in any way with your meds without consulting your doc. It is important to keep levels steady at the point where they work for you. Fluctuation can be a trigger on itself.

I haven't experienced any interaction with the b12 and my meds. I am on Tegretol and Gabapentin.

Don't stop or start with anything just like that. With having TN we must constantly think very, very carefully about every step we make, although it's hard to think when your in hell and sometimes we can't think at all.

Ellis.