POSTCARD #189: DELHI Hospital OPD: First time here, looking for room number twenty-four in a sea of people. There it is – and a seat near the door is vacating itself as I approach, a hair’s breadth thing, musical chairs. Reverse into place; beeb-beeb-beeb, lower body in sitting posture: ‘This seat has been taken folks, thank you’. Possession, identity, this is ‘me’, head upright, but easy behaviour, no fast moves, no eyes looking out… an averted watching through peripheral vision. I’ll not interrupt your eye-beams folks, go right ahead… and I’m looked at with a few fast head-to-toe glances, visual-sweeps I can feel coming from different parts of the room. The only white guy here, probably the whole building; pale, bleached-out, transparent, old, colourless. White hair, white beard, white shirt; a totality of whiteness, OMG! how white can you get?
Yep, it hurts the eyes, sorry about that but you’ll not notice me after a while, merge with background patterns, disappear before your very eyes; it’ll seem like I’ve always been here, neutrality, nothing remarkable, neither too much, nor too little. Trying to blend chamelion-like with skin tones of chestnut brown, volcanic ochre, oatmeal-compexioned, golden people. Gold-bangled, gold-ear-ringed, nose-ringed women – toe-ringed too, open sandals swish-swoosh footwear, soft-shoe shuffle: swish swoosh through the standing crowds, magical beings in vivid costumes of all kinds.
I can close my eyes now and drop back into the inner world, a kind of circus-clown backwards tumble into the darkness of that inner space. Neutrality; I can find it straight away sometimes, just the action of letting the mind go; a sense of opening in receptivity to nothing in particular – the space between things. The neutral feeling that’s neither one thing nor the other, not really noticeable – of course, you could be looking straight at neutrality and not see it. It’s that space, the gap that comes before any action takes place. Finding my centre in that space.
There’s a childhood memory of a face looking down at me, mouth articulating words I can understand but somehow said too slowly and I’m already wondering if I missed something: “Now, are you listenin to me? Just think about what you’re doing before you do it okay?” and for an instant I’d get stuck with that… maybe I could see what was needed to make it work – I think. Or maybe it’s taken me all this time, right up to the present moment, writing this post; it’s taken me decades to understand that it’s neither this nor that, neither coming or going. Touch base with neutrality.
Somebody calls my name; it’s my turn I’m led into a small room and a small doctor aged 60 maybe with tightly groomed bristly grey beard that grows all round his mouth right up to the edge of a dark purple lip line, original front teeth one larger than the other. Other than that, hardly any eyes, no ears seen, baldness with a few brave hairs blowing in the breeze from the ceiling fan. So his central feature is this island of mouth in a field of grey beard, but a nice man, kind, smiles a lot. I tell him about these headaches all the time, show him the diagnoses by other docs: PHN and a really yuk photo in my phone-camera of the Herpes Zoster in full bloom. He spins around the cranium (a mouth in a head) something insectoid? Says, as he is writing, Tegrital 200mg, Tryptomer 25mg, (Carbamazepine), and it’s scribbled in unreadable writing, same as all doctors do, gives it to me and I’m gone.
So that’s it, back into neutrality, wondering if these new meds are going to end up in another crash course in how to avoid dependency… or not.
“There is that dimension where there is neither earth, nor water, nor fire, nor wind; neither dimension of the infinitude of space, nor dimension of the infinitude of consciousness, nor dimension of nothingness, nor dimension of neither perception nor non-perception; neither this world, nor the next world, nor sun, nor moon. And there, I say, there is neither coming, nor going, nor stasis; neither passing away nor arising: without stance, without foundation, without support. This, just this, is the end of stress.” [Udana, third book of the Khuddaka Nikaya 8.1]
Circus clown tumbles into neutrality and a grub like mouth in a head. Brilliant descriptions that take me right there with you T. Love this post!
May these meds bring some relief.
Thanks Val, the whole thing seems unreal to me these days, an urgency and discovery of all kinds of stuff I didn’t know before. Thanks for your comment and that feeling of support…
hang in there, dear tiramit
finding out what is next
& living to tell
for you 🙂
Thanks yes, this is just how things are for me at the moment and great to have your encouragement.
Hope these new meds prove effective (and not addictive).
It’s a strange world we chronic pain sufferers live in. Sometimes I feel as though I’m on the outside (of this dimension) looking in. When a particularly bad episode occurs, I close my eyes and try to imagine leaving my body and watching this Pain Thing from a distance. I drop my shoulders and try to shrink into a smaller body and leave the Pain behind me. Rarely works, but I try.
I’m sure I’ve already mentioned it, but the day I played my Nepalese Singing Bowl and my spinal pain disappeared like magic (or a droplet of water drying up in the hot sun) was really quite extraordinary. It’s never happened again. I have a beautiful CD made by Stuart Boag which I find comforting in times of intense pain (if not healing). He is a poet, musician and storyteller whose work is inspired by the natural world. His singing bowl songs are tone poems (so the info says in the CD pack). I can highly recommend it as an adjunct towards some of those mind-numbing waves of pain (between the use of medications).
I really do hope these new drugs bring some relief though.
Not sure if you can tolerate noise with PHN, so Stuart Boag’s creations/music may be more hindrance (than help).
I’m new to this world of living with pain and have to learn how best to deal with it. There’s a tendency to dpend v much on meds. The Nepalise Singing Bowl I shall look into and any other sounds I can listen to. With PHN, some sounds are unbearable but anyting soft, gentle is okay. Again I need to know about sound frequencies and all that interesting material I’d like to read about, try out and learn. So thanks Vicki I’ll look into the Singing Bowls now…
Be sure you’re getting all the vitamins and minerals you need. We need more when we get older. In india I would consult an ayurvedic practitioner. And practice self healing meditation everyday. I know, I know everyone has advice. If it’s not helpful just flush it.
You’re right about vitamins and minerals, it was a lack of these that allowed the condition to be there, I had not been getting enough vitamin D which is sunlight. It’s nearly always hot and I have a tendency to stay with the computer all day, not eating properly and that auto-immune system drops or whatever it does and this is like an earthquake to the system, irreversible change, all that can be done is prevent it from becoming worse. The ayurvedic way is interesting, I’ll look into that, helpful yes, thanks…
I liked the funny descriptions in this post about you in white among the people in the waiting room and about the doc with the beard. Really vivid.
I hope you find something to deal with the pain or to heal it.
Things are still unpredictable as I try different meds. If I have enough sleep it helps to keep the pain back – if I have a bad night with pain, it continues for some days after because the body is exhausted with it. Extreme experiences in the response to sharp sounds and unexpected circumstances, like living on the edge – I think you know something about this kind of thing. Interesting to see the world through these eyes but usually I’m exhausted with it and all I want to do is have a good sleep.
I’m sorry to hear that it is that difficult. Even getting sleep at night can be difficult. Oh my goodness!
I really wonder what this is all about. I mean, in a couple of years when the pain has hopefully ceased, what will you think when you look back. What will you see as the purpose of this experience? Of course, this question cannot be answered now. But I keep wondering. Will this extreme experience be the very doorway to enlightenment, to the collapse of the separate self by sheer exhaustion? Or is it meant to put you on a search for healing, like I see in many other blogs here on WP where people go on a long healing journey and try every alternative healing method one can imagine? I keep wondering…
Best wishes for your health,
Thanks Karin, the thing is you have to shift gears and see this as a real life-changer, it’ll go on not for a couple of years and the pain has ceased. I haven’t seen any evidence it’s like this. All the case studies I read are about five to seven years then the pain lessens slightly. If it’s going to be like that, I don’t know what I’ll be like when I get there, probably say a 75 year old guy with some nerves in tatters or a long-term addict on prescription drugs.
I can see you blending in after while. Your thoughts were profoundly written especially with the pain you’ve been enduring. I hope these meds help.
Well, I’m used to being the only one of my kind living in other people’s countries – they get used to me being there mostly. These are not always days of enduring pain, also slightly mad (you could say) with the immense experiences or the impact on the body caused by the meds too… living in extremes, instability. I’m new to this and looking for a way to find some kind of ongoing peace with it.
Looking inside ourselves is a good place to find the elusive calm or peace we feel
This is true, also I’m aware of the trap that’s built-in with thought processes is the act of ‘looking’ perpetuates the concept that something is lost, so we never get to the desired object, like wandering around in a shopping mall, browsing here and there…
Do hope the Tegretol will help you. I was prescribed that once for Bipolar and another time at the Roosevelt Hospital Headache Center for migraines. I couldn’t tolerate the nausea– hope you have better luck with it. It is prescribed for PHN and here are two links about what people find with it: http://www.ehealthme.com/cd/postherpetic+neuralgia/tegretol
It is an anti-convulsant for epilepsy. Neither my neurologist nor my psychiatrist ever said anything about it being addictive.
Good luck with it. And if it does not work out, if you find the side effects too unpleasant there are still the antidepressants which are also prescribed for PHN.
Reiki blessings, Ellen
Hi Ellen, thanks for the two links, I’m aware of the associated nausea and haven’t started yet. The doc told me to start on low doses at first and slowly increase. He gave me a scheme to follow. I’ll start taking it soon, feel that I’m kinda unwilling to disturb what little stability I have but it’s a good idea if I’m to stop taking the other one gabapantine (Neurontin). Hey! Great new icon, I didn’t recognise you at first. Thanks for the info and suggestions…
Thanks! I don’t blame you for waiting to try the new medication. It is so scary trying new meds. Hope they will agree with you. Sounds like a good doc if he told you about the nausea and is starting you low. The whole thing about medication is a world unto itself.
“The whole thing about medication is a world unto itself.” This sounds like I’m going to have sort out exactly how I feel about coming off of one drug, and to what extent the symptoms are charcteristic of the new drug or withdrawl from the old drug and I have to maintain sufficient ability to be able to tell the difference. Anyway I’ll probably stick wuith this doc, as you say he told me about possible nausea and starting on a low dose, anyway he seems to be a good guy…
By the way, have been so caught up in the content of your posts, haven’t mentioned how good the reading of them has been. Very useful getting the Buddhist approach to physical suffering…
Yes, the idea of the blog is to express or try to express conscious awareness of all things. It was like that before I got the pain. Now I have to live with that day to day and conscious awareness moves towards that; the first noble truth: there is suffering, and the second noble truthis that it is caused by wanting things to be other than what they are. So I try to accept the pain and it disappears sometimes…
The amitriptyline and carbamazepine are probably improvements on the gabapentin and pregabalin if only because they’re older. Practitioners will have more experience dealing with their interactions and side-effects and, because they’re off patent, are less likely to have been sold a pup by pushy drug reps.
But that’s only true if you’re taking them instead of the others and not as well as them. Polypharmacology is bad for lots of reasons but perhaps the main one is that it quickly becomes impossible to sort side-effects and interactions from existing and developing pathologies. You end up in a vicious circle where doctors just keep adding more chems to try to counteract the ones they’re already giving you and the overall picture of your health gets murkier as the chemical stress on your body gets higher.
As a tricyclic, amitriptyline in particular will have lots of interactions with other drugs so it’s important that your doctor knows everything else you’re taking – whether for PHS, hypertension, indigestion or recreation. Of course the newer and more obscure the other drugs are the less likely your quack will know how they mix with tricyclics.
If you’re going to take an anti-convulsant I’d definitely try carbamazepine (or sodium valproate) before something like gabapentin. They’ve been very widely used by epileptics for a long time and most GPs would have lots of experience with them. Just don’t mix them. They’re both CNS depressants and are likely to act synergistically against heart and lung function. Don’t mix them with alcohol either.
The neurologist in Switz gave me a prescription for amitriptyline and carbamazepine and I was surprised to discover they were actully really quite inexpensive to buy compared with the gabapentin and pregabalin which was like an arm and a leg. I didn’t take them though, being not sure of the compatability factor, so we’ll see, I’ve reduced the dose of gabapentin since writing this post, and I can get a clearer idea of what this head pain does and what it’s likely to do, so I could get by on fairly small doses. The problem is though it’s just so depressing to be living in a world of headaches and half-headache all the time – alcohol is out of the question of course and life is pretty grim when you think this is going to be what it amounts to for 5 to 7 years and then it might ease off a bit, not enough lifetime left, so you start upping the dose again because you want to get rid of the headache or you just need the antidepressant aspect of it. Things being as they are, I’m going to see the Neuro here in Delhi on Monday and he’s said something about going on to the other stuff I got in Switz. So let’s see, thanks for the info…
Be very careful with the amitriptyline dose.
The old tricyclic antidepressants are actually a bit more effective than the modern SSRIs and SNRIs (i.e. very slightly better than a placebo) but there’s a good reason they’re hardly used any more. They’re pretty damned toxic in overdose and they hit your cognition and ability to recognise you’ve been poisoned. Not a good thing to have in the bathroom cabinet when there’s someone in the house feeling suicidal.
That being the case I can see why the neuro here was waiting to see how stable I am before introducing the amitriptyline, so I’ll have to read what it says on the tin before applying and not fall into a gloomy state about the whole thing…