Hi Sheila, 13 years with TN I have learnt a lot, everyone is different and you have to find what works for your body and immune system.
I was in remission all thru 2016 then as the cooler season started in April 2017 it came back - was bi-lateral but sort of had a veil over the pain.
I increased my B12 to daily 1000mcg as I had backed off to 3-4 times a week. then I realised that the weekly vitamin but mostly about 30 trace elements I had taken, I had run out of. Since then I have ordered more on line (EAGLE Tresos B plus) and took one tablet each day for a week and now back on my weekly dose. I also take a high dose B vitamins weekly. I do not like to mega-dose as I think that is when issues happen. Well my TN has improved greatly and I have dropped my medication from 600mg Tegretol/day to 200mg/day over a weekā¦ I am lucky Tegretol works well with my body with no side effects unless I get to 1200mg when I end up with drug induced Lupus. there is definately something in the vitamin tablet and I think its one of the trace elements; so I will not run out again. Because there are about 47 of them it would be difficult to find which one ā¦ Regards
Hi GP, I think maybe the type pf stress is important. Iāve also just gone through a ādivorceā, after forty years together, and have moved house. While I noticed my TN got worse overall, it was never as bad as actual anxiety would make it. For example, if I had to go the dentists the TN would be much worse - if had to go the doctors, report undone repairs, have any kind of confrontation. In short, anything that made me (severely) anxious or caused panic attacks and - bingo! - the TN would be zapping away. I think maybe itās a case of stress and stress. I donāt know if anyone else has noticed a difference in the types of stressants, or the situations, that are more likely to make things worse?
Your B12 experience is very interesting. I was put into remission by B12 injections and have stayed in it for quite a long time. I get 4-weekly injections but they are currently being threatened by a new doctor who thinks I shouldnāt be having them that often. Theyād rather give you Carbamazepine - despite severe side effects - than a simple and cheap B12 shot. Whereās the logic in that?
Hi - yes you are correct, stress can be very different for different peopleā¦ I think if you tense up with anxiety then it definately makes the TN worse. B1 & B6 vitamins also help a lot with stress in your bodyā¦
Crazy, better to take the B12 than a drug, especially when you get side effects ā¦
B vitamins wash out of your body when it does not need as much, hence having to continually replenishā¦
If you doctor does not think you need it, have them give you a blood test and check your B12 levels. My doctor does this once a year and they are high but never over the top, so she says continue what I am doingā¦
I actually have a B12 spray I am now using - each spray under the tongue is about 500mcg so I can do this if I get a bad attack and it definately helps settle it quicker. Anything that works!!! xxx
Also, I keep very busy. My neurologist said I am good at blocking out pain when I am focused on doing somethingā¦ eg I never get TN pain when I am gardening or out Birdwatching or driving or editing my photos. again it all depends on how you concentrate/focus on thingsā¦ and whether you too can block out painā¦
Great skill to have, GP, being able to block out pain. You should maybe run classes or seminars in that for us TN sufferers. Youād make a fortune - I know Iād sign up!
Not really something that can he taught. Only thing I can say is that I keep very busy & therefore concentrate on what I am doing. The concentration is what blocks the pain I believe my muscles relax also, which helps. First find something that you love doing, then set yourself a task to do; eg Gardening - prep soil & plant my seasonal vegetables. Then get involved in it. You may start while in some pain, but as you work on your task, for several hours, the pain will subside as you relax & complete your task. xx
Yes, I agreeāif you find something that can take your mind away from the pain, it is fantastic! I raised a batch of chicks lately (needed to replace my laying hens). Just watching them do their silly thing was fascinating and I could do it for an hour! I found that the pain just seemed to recede in the back ground all that time. I bet a good aquarium would be similar.
On the other hand, watching the news, or dealing with difficult peopleāthe pain just seems to get worse and worse.
Hi Ziggy
I think you just agreed with me notGP1
But-wow-baby chicks.
I agree .Cute things can help me.
I have cut down on a lot of the meds.Mint essential oil full strength on my
jaw bone helps in between meds.And those tiny mints.
I donāt know for how long-but all I care about really is for my pain to be
gone NOW.
Getting into āflowā, GP1 - an ancient art. Although I think itās really just intuitive. As Iāve got older Iāve found less and less things that put me into flow - more just bad temper! Maybe I need to get more Zenā¦
I have started breathing in different colours and breathing out the colour
tarnished with all the pain in my body.So if I breathe in white it comes
out like weak tea.If I breathe in red it comes out maroon.Just playing with
that seems to help a bit.
Seeing I need to breath I may as well take healing breaths.
yes,Ziggy, agree that some things, which cause some stress do make the pain worseā¦ I often wonder if under those circumstances our blood pressure rises slightly, hence rubbing on the nerve more ā¦
I do a lot of volunteer work, which is easy to find; helping other people and organizationsā¦ keeping busy can be easyā¦ xx
Hi GP1,
I am so glad to find your message again. It came to my email box, and I read it there, and I already take most of what you do, but had slacked off on my minerals too. So at your suggestion, I started taking them again, and OH MY STARS! I CANāT BELIEVE THE PAIN IS 80% gone, 90% of the time! Then I lost the email and I donāt know my way around in here very well. I just had to find your message and thank you! I have shared your advice with about 5 TN support groups on Facebook. I discussed it with one friend with TN and she said she thinks itās the amino acids that are often in with minerals, as she has read that amino acids help TN a lot. My minerals are chelated with amino acids.
I have lupus, and canāt take the anti-seizure meds, so this revelation of you getting drug induced lupus when you take it, might explain exactly why I canāt tolerate them! Wow, the things we learn from othersā experiences is amazing. So awesome to have a place to share insights and help. Magnesium and D helped a lot for me too. Mine are just minerals, so that might narrow down your 47 ingredients to know what is helping. Thanks SO MUCH!!
Edit: I saved that message, and it appeared to reply under the wrong post, even though I clicked āreplyā right under your post about the minerals/vitamins. I hope others can find that post and will also be helped by it.
Great to hear Shiela_W thanks for your info & glad to help
I am back on my vitamins & minerals but I am in Western Australia visiting my new granddaughter. The weather is colder here, so had to increase Tegretol but only to 350mg/day but itās enough with my vitamins & minerals to take the edge off the pain, caused by the cold of a morning & evening only. Crazy thing it is but happy I can manage it.
Temp is 37 degrees at home, so I will be able to come off all meds when I get back home. Xx Gail P
Stress definitely increases tn for me. I can even look back over the last thirty years and the worst incidences coincide with high stress at least for me.
Long work hours, long work hours and long school hours at the same time, etc.
Hi Brainwave (thatās a good name for TN, but weād have to call it Brainwave from Hell!) Yes, it seems fairly universal that stress makes it worse. Just a (very) low dose of Amitriptyline (10mg) seemed to knock most of my recent shocks on the head, but I suspect the fact that time is passing and my stress levels are not so acute now is what is really facilitating that, rather than the wonder of Amitriptyline!
Hi. I have TN as well as Fybromyalgia. I have thought of getting B12 injections and from what you have said, it sounds as if I should give it a try. I am on daily Tegretol which helps with the flares but still having constant pain.
Stress - Yes, I find it does make my pain worse.
Best wishes
Riana 