Trigeminal Neuralgia

[Gareth]

It's a symptom of my MS, and it really is very challenging. It's basically an excrutiating but short-lived pain in my face.

When I say excrutiating, I mean that. It's probably the most painful thing I have ever felt, and it comes along in little bouts. Each spike of pain only lasts a couple of seconds max, but it can go on for about six hours. By the end of it, I'm physically drained.

Mindfulness is really helpful in terms of the thoughts that these attacks bring about: "what if this pain never goes away," "this is getting worse, I can't take any more." That type of thing. I am very good at letting go of these thoughts before they develop into a story in my head.

However, it's really difficult to hold the pain itself in awareness, because it's so short and often catches me unprepared. Whenever I can hold it in awareness, it takes much less of a toll on me. Does anybody have any suggestions on this? My instinct is to meditate through the pain, to get better at being with the pain. Not an easy task though.

[FeeHutch]

I know you have had a tough weekend and I really hope this bout ends as soon as possible. Befriending pain helps but isn't easy.

[barbs55]

Reading between the lines of your post, and taking as read my massive sympathy with you, it feels like it's maybe you are 'trying too hard'? My own experience of pain is that when you're in it, you cannot conceive of it not being there anymore, and that makes it very hard to just stay with, and to remember about ideas of impermanence/everything changes/this too will pass. The experience of the pain itself take you to another place in your head where you can no longer get in touch with knowing it WILL change. Afterwards, when the pain has moved on, it's much easier to see how we do that to ourselves when we're in pain. Tara Brach says some interesting stuff here:

"Radical Acceptance includes accepting both the feelings (of anxiety) and the aversion to it. In fact, acceptance is not real and not healing unless it honestly includes all aspects of your experience."

I think she means that I am very good at accepting my anxiety but not so good at accepting my aversion to it. We fight our aversion to it which makes more resistance, in a vicious circle.

This is only my personal experience but I find owning my acceptance of how much I hate this is another step towards just sitting with the pain. If you are trying to 'to hold the pain itself in awareness' you may just be trying too hard, it's another task to avoid being with the pain maybe? Resistance is such a slippery thing and are minds are so clever!

I do get my family to remind me when I'm in that sort of pain that it has come and gone before, and being with it rather than fighting it seems to make it pass more easily. Also talking with others with the same sort of pain has helped me, there's something about the 'aloneness' of being in pain that makes it worse too.

I really hope you are suffering less today.

[Gareth]

When I can hold the pain in awareness, I feel like less adrenalin is pumped into my body, my heart rate doesn't increase so much, and it's a much nicer experience for me.

Most times the pain just shoots into my face unexpectedly, I yelp or double up, my body gets jacked up as if it's in a fight.

Maybe I'm striving for something that I can never get..........

[JonW]

Your posts are inspirational, Gareth.
All good things, Jon

[Gareth]

Thanks Jon.

Quiet around here again. I really don't understand these lulls.

[FeeHutch]

Well, personally speaking, I definitely have times where I am less or more plugged in to the virtual world and sometimes I certainly feels it actually benefits my practice to be online less.

I hope you are in less pain now?

[Yoga Empowered]

hey Gareth,
I experience the same sensation in my calves + shins and when I do can really to nothing more than hold the area, direct love to it and use my breath to ease the experience.
In Yoga teachings, I was taught that a long, steady exhale activates the parasympathetic nervous system - the relaxation response - if you will. By allowing in inhale to happen naturally (you never want to strain the breath - this can cause anxiety - no thanks!) and let your exhale get long, smooth and steady - you are not only inviting ease but you are able to feel more empowered as you can do something.
Wish I had the answer to make it go away but since that's not an option I choose to breathe, allowing that exhale to redirect my attention and bring ease in any way I can.
Here's a podcast I did that will lead you through it: http://yogaempowered.podomatic.com/entr ... 5_42-07_00
Hope it helps.

[ken300]

Gareth,

I've had brain tumours for 20 years & have had 20-odd big operations. I'm now a bit of a basket case - I've got loads of symptoms including trigeminal neuralgia. Mine is a constant 'tooth ache' that's only about 3/10 on the 1 to 10 pain scale & then like with yours I get long pulsating bursts of the most excruciating pain I've ever felt.

The acute pain usually comes at least 3 times a week - it feels for all the world like someone is drilling into the front of my lower jaw with a power drill or cutting through the fleshy part of my nose with a pair of wire cutters - on the plus side I'm not scared of being tortured by terrorists anymore, nothing anyone could do would be worse than that!

My emotions are often all over the place too, I'll very often just not be myself & I really hate it - sometimes I'll get really upset & spend all day in tears for no reason, other times I'll be REALLY angry, depressed & miserable, again for no reason & so on..... I'd like to banish all those things from my life if I could.

One thing that really does help is a chapter from the book 'Nothing special... Living Zen' by Charlotte Joko Beck. It's chapter 3, called 'Sisyphus & the burden of life'. It's about a bloke that's being punished for all eternity by having to push a boulder up a mountain, as soon as he gets to the top it rolls down again & he has to push it back up all over again - to me the boulder represents all the stuff in my life that I'd rather wasn't there but that there's nothing I can do about, I just need to accept it. Sisyphus might be having to push his boulder but that doesn't stop him appreciating all the other stuff whilst he's doing it.

I don't want the experence of my life to be dominated by my 'issues' for example:
* I still want to appreciate the art exhibition we've gone to even though my pain has just popped up from nowhere
* I don't want to have a full-on argument with my girlfriend just because I'm having an 'angry day'
* I don't want to kill myself just because I'm having a 'depressed day'
* If I'm frustrated because my memory has failed yet again or I've fallen over in public for the thousandth time I don't want to get all moody and angry about it & snap at the people that are trying to help me

I know that I can never get rid of these things so when they crop up i just put them in my imaginary boulder & keep on pushing it along with all the other stuff that I'd rather wasn't in my life. When I do that and be mindful (come back to how things really are NOW) then it makes all the stuff that I've put in my boulder seem much less of a problem & it's much easier not to let it dominate your life - you might find that you can even just 'detatch' yourself from your issues entirely.

When the pain comes, I think 'oh b****r not again', put it in my boulder & get on with my life - not fighting against the pain or trying to ignore it (I still swear a lot - only from the pain though!) but I just making sure that I'm still being mindful and feeling the things that I normally would (like stroking my cat or listening to music) whilst the pain's going on 'in the background', the pain is still there but it isn't obliterating everything else, before you know it the pain isn't such a big deal.

If you're having a bad day or even if your world fallen apart because your treatment hasn't gone to plan (mine never seems to) & you don't want it to dominate everything - just do the same & pop it in your boulder, be mindful & carry on pushing it up the hill. It won't help alleviate the problem but it'll stop it screwing the rest of your life up - if I didn't do that then I'd be miserable & all alone now instead of being surrounded by people & pets that love me & happy.

On a practical note I've found the intense pain comes MUCH more often if I drink alcohol (particularly beer - some drinks are worse than others), caffeine, diet coke etc... or eat lots of chocolate - if I avoid them it helps no end.

Apologies for the long post - I just wanted to share my experiences!!!

Ken Taylor

[Gareth]

No need to apologise Ken.

Reading posts like these reminds me that I am not alone in my suffering, in fact I'm lucky in the fact that it doesn't come round nearly so often as yours.

We all have our own boulders to push.