Think my B12 was only in the 200s, and the dr didn’t take too much persuading. No loading shots, tho. Started on 3 monthly, then 10 weeks, now every 8 weeks.
My last attack (my worst) wasn’t stress, it was daft! Woke up with a pain in my neck - must have slept awkwardly - that set my jaw off (first time) and that triggered my usual top two branches. Sincerely hope it’s not going to be all three branches from now on…
Hah! See what I mean? My first attack lasted a year and a half - I didn’t believe I’d ever get any remission, then B12 shots put me into remission for almost two years, until now, although it’s just threatening at the moment rather than being fully-fledged. That’s why I’m going to see my doc tomorrow, to see if I can get tested for Functional B12 Deficiency, just in case that’s my real problem (I should be so lucky!). After that I’ll be back on meds if it returns to full vindictiveness. It really is a very contrary and erratic condition. I swear they know more about Mars than TN!
You really should have got loading shots, CR, they might have made all the difference for you. And if your current injections do help, every 8 weeks is far too far apart. One of the problems with B12 deficiency is docs don’t know much about it and, for reasons I find completely unfathomable, don’t take it too seriously - which is very odd considering the damage is irreversible and it can cause paralysis!
I’m a self-confessed B12 zealot because I think it’s a greatly underestimated condition, especially in TN, so I’m very wary of yelling at people and telling them what to do, so please feel free to ignore me completely here, but I would consider asking for the normal loading doses you missed (it’s only 10 shots given on alternate days) then asking to be put on four-weekly. The loading doses in particular might show you if you are still short. If you got them and they greatly improved things that would be a real indicator of a problem.
Okay, said my piece! Best of luck with everything. X
WWTET: not really sure how the B12 affects my TN - I started it for neuropathy in my feet, and was already having shots when the TN started…
I’m moving in a couple of months, so don’t know whether to have a conversation with my current gp, or wait till I move. I have multiple chronic conditions (I’m moving because I’ve had to take ill health retirement), and it’s always difficult to work out what affects which. The hope is that retirement will give me the time and possibly energy to concentrate on getting me as fit as I can be. Here’s hoping!
Ah, that explains how you got shots for TN! In my experience neither docs nor neurologists have any knowledge of a TN/B12 connection, and care less - and here was me thinking you had a very enlightened doctor too!
But f you have long-standing neuropathy, and then TN on top of it, that would definitely indicate you’re having a B12 problem. Again, my un-asked-for advice, would be to use moving house and getting a new doc to say that you’ve been getting the treatment but it’s obviously inadequate as you are deteriorating rather than getting better. Get them to give you loading doses then put you on a 4-weekly regimen (at least). If you can work a bit of flattery on them about how they seem so much more enlightened than your pervious doctor, then so much the better! None of these things are out-there; they are all covered by the NICE guidelines and it’s the treatment that you really should be getting.
Of course, if you know your current doc well and you think they are amenable then print out the NICE guidelines now and take them along with you and say ’ I’m obviously not getting enough B12, can we start fresh and go in with loading doses till we see some improvement’. Incidentally, they are acutally supposed to continue with loading doses till the improvements stop then move onto maintenance, but lots of docs (most!) do what yours is doing - go at it backwards and wait for you to deteriorate before they give you more. Its really very bad form.
Best of luck with whatever you do. I’ll keep my fingers crossed for you. X
i have not seen any peer reviewed studies regarding stress and TN, however, there is a wealth of studies correlating stress and pain in general. A lot of intuitive reasons for this; an increase in damaging inflammation, body in constant ‘fight or flight’ mode with enhanced nerve sensitivity, and, in the case of TN, nerve aggravating teeth grinding. Additionally, for those suffering from virus induced TN, a weakened immune system.
On a personal anecdotal level, my wife has been working on her TN for a large number of years, and there is a very, very direct relationship with her between pain and stress levels. In fact she can often bring her pain down substantially by practicing mindfulness exercises.
I could believe that, Sean. I have to say for me personally, doing mindfulness would be more likely to make me more stressed! I’m that person who as soon a someone encourages me to relax I get tense and start yelling at them for telling me to relax. But I couldn’t agree more about all the ways stress triggers pain. It’s an ugly monster. Retiring to the South of France is the only answer. Or maybe a desert island.
Out of curiosity, where does “woman with the elect” pen name come from?
I try and do deep breathing while waiting for my slow internet connection.
Relaxing is a good thing.If I could only find a strain of medical marijuana that helps during the day.
Today my right hand was so numb I was forced to relax.
But sometimes the pain is worse in my mouth when I am not busy.
I got some toothpaste with colloidal silver today.Maybe that will be the magic bullet.
Sorry Geo
I just saw this.
I am not sure I understand this chat page.But I am glad I found this.My one problem is that food sometimes makes me throw up.Just looking at the list makes me dizzy.Wishing for a way out of this dreadful maze.And wishing health and happiness for all.
Definitely this is a condition that needs very low stress levels to heal.I have been in months long remissions when my life is on a very happy even keel but as soon as any high stress levels enters in comes the pain and stays!
If I could be as stress free as possible I would be pain free.However life is not like that all the time…if only…but after a particular awful flare up caused through stress I am determined to " run" my life with way less stress.
Thank you crkenn,I am in the UK and test normal for B12 and have discussed B12 injections but it’s no- go there.My son did have them done privately in London once but at vast price.I shall go back to my GP
I have followed many diets plus the above supplements and have had no success in pain levels and have often been better when on a junk food diet when in places where I am unable to get proper food.
So I feel that stress is for me anyway the greatest factor in bringing about pain.
Have you read Full Catastrophe Living?
It is stress reduction through meditation.
Maybe you would be able to find relief through yoga and stuff.
I find just saying OK to most things helps a lot.
Better than all the arguing and negotiating that ensues sometimes.
It comes from my direct experience of TN, Sean. I get it in my teeth and it literally feels like they’ve been electrified. I have a ‘zone’ and when I’m in full shock mode it literally feels as if someone has stuck an electric cow prod in my mouth. The rest of the time they’re a bit ‘sparky’, as I think of it ,and it feels like the areas is charged with static electricity or something. Or there’s a low grade current running through them.
I reckon I’d have made a good fairground attraction!
Hi Ellen, That’s really weird, I just saw Full Catastrophe Living reviewed in an old magazine I had torn up. What are the chances? That seems too much like fate, now I have to go and look it up! Thanks for the recommendation. X
That’s interesting, Eileen. You actually have smaller remissions of months and feel that stress can bring on fresh attacks? Have you actually observed the opposite happening, maybe on holiday or something and visibly seen the pain go away? Or is it more of a case that your TN isn’t so bad during low stress periods?
My wife describes that pain often. Or severe burning, but sometimes hammer blows or knife cuts.
I get the burning; that tends to lie under the shocks. When I was on Carbamazepine I got burning every time I put in my night guard. Just now, with the TN in threatening mode, burning is what I chiefly have, although I had two days of shocks. Ive never had hammer blows or knife cuts though, thank God!
I have just come back from three weeks work in Nepal.The temperature was in the 30 s Celsius ,the pollution was awful,the country in a bad way and the rest …but the people so lovely and my work so satisfying…yep you guessed no pain as I was so relaxed.As soon as I get back to the West and families and terrorists and the stress of just life itself back comes my pain.This always happens and this is work…I can only think it’s being in a bubble away from the real stress making things of just living in the west.I haven’t had a holiday since I visited family in NZ in 2014 and I did have pain on that holiday related to the stress factor that I was seeing my siblings after along time.Its so interesting this stress and pain.