POSTCARD #156: Chiang Mai: I arrive in the hospital waiting area with the pain, this intrusive stabbing pain in the head and neck, postherpetic neuralgia, a permanent headache; sounds worse than it is – could be I’m getting used to it. There’s a flat screen TV and a coffee place, maybe I should order something? I have the iPhone to fiddle with, get busy with that… not interesting. Okay so try thinking about something else, but at this particular moment, there’s nothing else to think about – only the pain all around the right side of my head and neck. Think of something… thought itself is a free app I have the option to download on the mind/body device (namarupa) but even though I don’t have to download it, some of it seems to be here already, appears involuntarily. I hear the thoughts, the ‘voice’ inside the machine shouting out: Hey! the pain is happening to ‘me!’ It’s not happening to you, or them, or him, or her, it’s happening to me! The pain is ‘mine’, I am ‘possessed’ by it. Everything I love and hate, everything I love to hate – it belongs to ‘me’… it’s ‘my’ enemy!
With the pain swirling like a dense, dark cloud around my head and neck, I step carefully over to the TV that nobody is watching. There’s a remote, so I can flip through the channels and see where that gets me. Bend down to get the remote and the storm of pain happening to ‘me’ is there again, overwhelms everything, too much, for a moment I give way to it… and it’s then I notice there’s a space of somehow being detached from the pain, it’s something that’s not felt anymore, enough of an easing back from it to see the pain is an appearance, like everything else.
Sit down in front of the TV. Focus on the remote, press the buttons… so many channels. Some channels I recognise, then up into higher and higher numbers; places I’ve never been in before. Almost all of the channels are hazy or white-noise then I break through into a place that’s loud, clear and colourful. A Korean game-show, dubbed in Thai. It’s as if the storm of pain is all around but outside of this curious place – I’m safe in here. The scene unfolds, all the characters are lipsticked and painted with cosmetics like grotesque clowns, with amazing hair and impossible teeth, an embodiment of consciousness deeply obscured in layers of ‘self’. Man created God in his own image; a mirror reflection of the ego.
It’s a serious competition about trivialities; guests make appearances, have to tell anecdotes related to the question to gain points. They gaze at each other and see themselves as their own reflections; deities in the hall of mirrors – adults dressed to look like ‘cute’, children (kawaii), a real live dream-world; and the winning of the prize! Lights, colours music, the reward, congratulations, created laughter, spontaneous and heartening applause…
Just then, the nurse calls my name, I have to go and see the doctor. I get up from the chair slowly and take my pain away from the transparency of this kind of joyful TV state that’s doing its best to cultivate a desire for everything that is pleasing and a loathing dislike of everything that’s displeasing, perhaps unintentionally encouraging the hating of it, the not-wanting-it-to-be-there inverted craving, that contributes to the intensity of driving the economic machine… a kind of mental captivity; never seeing that the business of the actor is in the nature of appearances. The art of the illusionist, the politician…
Quiet minds cannot be perplexed or frightened, but go on in fortune or misfortune at their own private pace, like a clock during a thunderstorm. [Robert Louis Stevenson]
Bummer you ended up with PHN. It’s not all that common. Hopefully it will recede over time.
Be careful with any drugs you’re prescribed for neuropathic pain. Along with psychiatric drugs they’re the ones whose data have been most distorted by systematic gaming of the trial process by drug companies. Neurontin (gabapentin) is one that has been shown to have had its positive effects overplayed and side-effects (especially suicide) underplayed in the data, but that’s only because some US law suits succeeded in getting internal Pfizer documents released. There’s good reason to believe most – perhaps all – the other drugs for neuropathic pain have undergone similar distortions to their data. That’s not to say they don’t work in some people. Just that doctors don’t have good information to base prescribing decisions on and the pack inserts don’t reflect the true risk of side-effects.
Sounds as bad as Microsoft. And Windows sure is a pain.
Medical waiting rooms are one of the few places I’m still exposed to TV culture. Daytime TV culture, which has gotta be the worst (I hope). I wonder how it effects the way symptoms are reported.
And why would anyone want to artificially give themselves bags under the eyes?
It’s a case of getting used to the idea of it. I’ve had the pain since early September expecting it to go ‘away’ some day soon and now it looks like I have to make friends with it. I’ll be looking carefully at the meds and expect to develop a knowledge of the subject as I go along. At the moment, yes, I’m on neurontin 100mg three times a day and the suicide side effect is something I need to watch out for hmmm. It has helped though, the pain is dulled like listening to your neighbour’s stereo through the wall next door. Also Trilen Tab (LASA)(F) before sleeping. And yes I don’t know what’s good about having bags under your eyes, I suppose it’s intended for faces that are otherwise flawless…
Regarding Neurontin (this info comes mostly from Bad Pharma by Ben Goldacre).
Firstly, out of 27 clinical trials conducted only 12 were published. The others were left out because they showed only slight positive effects and/or moderate to high risk of side effects.
Of the 12 that were published almost all changed the parameters they were reporting on between the design of the trial and its reporting. What this means is that what they were actually testing didn’t produce impressive results, so they hunted around the data for something that looked good enough to publish. If you slice the data enough ways you will eventually find what looks like a positive result purely by chance and this is almost certainly what Pfizer’s researchers did.
Even after that the results weren’t particularly impressive, so Pfizer undertook a ‘seeding trial’ called STEPS. Seeding trials recruit large numbers of doctors to prescribe a pill to real patients and collect data on the results. Doctors are rewarded for participating. But there’s no intention to use the data (STEPS data was never analysed and never published). What it’s meant to do is get doctors into the habit of prescribing a new drug. Internal Pfizer documents confirm that STEPS was a marketing exercise, not a research project. It was successful. Sales of Neurontin took off despite the fact published data failed to show it was any better than cheaper and safer competitors. Pfizer documents reveal that of 2759 patients enrolled in STEPS, 997 suffered side-effects, 73 had serious adverse reactions requiring hospitalisation and 11 died. All for the sake of marketing.
Pfizer was also caught out illegally marketing Neurontin to doctors for uses that weren’t approved by regulators (doctors are allowed to prescribe drugs that way but drug companies aren’t allowed to market them for such uses). They paid $430 million in fines in the US and an undisclosed amount in lawsuits settled out of court.
None of these abuses are particularly unusual. Drug companies are regularly caught out doing this sort of stuff but simply incorporate the costs of fines and lawsuits into the price of the pill. Neurontin is unusual in that Pfizer was forced to disclose documents that showed how seriously deficient the data it had released was and how it went about turning the drug into a blockbuster despite its many shortcomings.
Doctors prescribe so much Neurontin because they’ve been lied to and manipulated, not because there’s good evidence it’s safe or effective. That doesn’t mean it never works. Just that no-one has a clue how likely it is to work or how likely to mess you up.
BTW, Neurontin is addictive. Rapid withdrawal can produce nausea, mood swings, sleep disturbances, sweats, increased pain and risk of seizures.
Well, thanks for this, and the Bad Pharma link, but you’ve got me worried now; Neurontin is addictive, withdrawal causes nausea, mood swings, sleep disturbances, sweats, increased pain and risk of seizures. Aside from that I’m glad to hear about the truth behind pharmaceutical companies, it’s something I’ve always suspected. Right now I’m thinking it’s a case of how to survive in the meantime and develop in a balanced way in these circumstances. I just keyed in ‘alternatives to neurontin for nerve pain’ in Google and working my way through that, in the process reading more and more about side effects. I need to find a medical practitioner I can talk to, language problems here in Thailand and attitude difficulties in North India… I’ll be in Switzerland in November I’ll ask the doc there. Thanks as always for your input. I appreciate it
As I said, we know about Neurontin because of the lawsuits. And the lawsuits were successful because the drug sells very well so there were lots of people getting adverse reactions. It’s quite likely other medication for neuralgic pain is as bad but the data remains hidden. (If you’re interested I can explain why data about medication for pain and mood problems is particularly likely to be distorted).
If you’re getting relief from Neurontin you may be one of the lucky ones (i.e. 1/3 to 1/2 of patients in the published trials, but who knows what the figure would be if unpublished data was included). But you need to be wary of side-effects above and beyond what a doctor or enclosed leaflet can tell you. About 3% of users (again in published data) get weight gain and up to 10% experience fluid retention. Given your BP problems that’s something to watch for, especially if you take it for a long time.
You also need to watch for interactions with other medications (especially painkillers), alcohol and caffeine.
100mg/day is about as low a dose as you get (they dose up to 1800mg/day, though usually only for people with severe epilepsy) so hopefully you won’t be troubled too much by side effects. But even at a very low dose you can get withdrawal symptoms from stopping it. These symptoms are often interpreted as a return of the condition so people go back on the pill (whereupon the withdrawal symptoms disappear). This can result in continued use of the drug long after the condition it’s supposed to treat has resolved (most PHN subsides over time).
I’m not sure what the situation is in Thailand but in the US Neurontin is abused recreationally so it’s best not to leave them lying around where they could be stolen or tell too many people you have a stash of them.
Thanks Cabrogal. Here’s hoping I’m one of the lucky ones and 100 mg is effective enough, I’ll watch for the side effects you mention.
Helpful to know about interactions with medications such as painkillers, alcohol and caffeine. It’s something I think I can handle; I don’t drink, already cutting down on caffeine and the only thing I need to consider is other painkillers. I have backache sometimes and take ibuprofen.
The dependency aspect bothers me, especially if you say most PHN subsides over time. I can’t imagine how it could be a recreational drug.
It would be great to learn that permanently. How to move back into this detached space where the pain does not belong to a ‘me’ anymore.
I have heard of people who are able to undergo root canal treatment at the dentist without anesthesia.
Until you have mastered this, I hope you find something to ease the pain.
I’m sorry that the Variolinum LM6 did not have the desired effect. What did the clinic recommend? A higher potency? Or something else?
I hope you get better soon.
And, I too wonder why anyone would want to give themselves bags under the eyes. But, what people think about beauty is culturally very different. I heard of a woman who went to a tribe where woman are intentionally made fat with camel milk. The are more attractive this way.
Thanks for sharing,
Thanks Karin, looks like it’s a learning process, finding that space where pain doesn’t belong to a ‘me’ anymore. The homeopathy clinic didn’t have anything to say about the treatment I had before. It seems to be about building up my immune system right now. So it’s early days, let’s see how things develop. I notice a difference taking the neurologist’s med and it’s a relief. I’m looking for some stability here in the new surroundings of having a pain that doesn’t go away. Don’t know why I posted the lower eyelid pic, it just seemed bizarre, alongside the Korean game show at the hospital waiting area…
Thanks for your help
Hi Tiramit, I’m so sorry to hear of your suffering. I have had post-herpetic neuralgia for years, but it comes and goes. In my case it is a low grade burning between neck and shoulder that seems irritated easily by clothing tags, so I cut them off. I’m very grateful this is not debilitating. I have never used any medication for it. When it flares up, I guess I sort of greet it as an old annoying acquaintance, knowing what it is, so there is no fear, just awareness. I wonder if acupuncture would help you? The pain is caused by inflammation along the nerve, caused by the herpes virus that causes chicken pox. Perhaps the nerve is trying to say hello, weird as that sounds. As Thay says, hold your pain, as you would a crying infant, letting it know you are there, that you care. “Then we suffer less.”
That’s brilliant advice.
Pain is very susceptible to control with the mind. That’s why if you hurt yourself jumping for joy after getting good news you hardly notice it but if you do so after getting bad news it’s so hard to tolerate.
A good example Cabrogal, ‘if you hurt yourself jumping for joy after getting good news you hardly notice it’. So many ways we can react/respond o pain
Here’s a good article by the neuroscientist and philosopher Robert Burton that touches on the nature of both pain and Big Pharma. It’s central topic is fibromyalgia but the insights he offers can be generalised to all forms of pain.
Interesting point, we don’t know exactly what it is and by showing a woman stating ‘my fibromyalgia is real… Pfizer runs the risk of creating or augmenting the very symptoms it is trying to treat.’
Not only do we not know what fibromyalgia (or any other pain) is, we don’t know what ‘real’ is.
If you’re watching Bugs Bunny on the TV it would be theoretically possible to objectively examine the state of the TV’s components (or the TV guide) to determine that, yes, Bugs Bunny is on TV. Does that make Bugs Bunny real?
It’s what I always suspected, commercialised realities…
Ah, that’s the answer.
It’s only real if you can charge it to Mastercard.
George Orwell in 1984: “…first they steal the words, then they steal the meaning.”
Thanks Sonnische, interesting how you refer to it as an old acquaintance and how the nerve is trying to say hello. I say this because in Thai language it’s called Ngoo sawat: snake says hello (again). The problem I have with it is it’s location; the lower right side of the head, this means it’s like a very bad headache. I like the idea of holding the pain as you would a crying infant…
Great quote from Robert Louis Stevenson, and insight into him. Now I’ll think of him as a Buddhist at heart.
Nice! I studied him at school in Scotland, had to because of exams. Now it’s seen in a different light. Thanks Mel.
hope you get better really soon …
Thanks Bert, I’m getting to be dependent on Neurontin 100mg three times a day. It turns the pain into a dull and muffled sound.
you talk about it, like it is tinnitus. pain and sound might well be related somehow. take care
It’s more like there’s a wall around the pain, I can’t feel it but I know it’s here because sometimes it breaks through and there’s this stabbing pain for a moment then it’s gone. The only thing relating to tinnitus is the a clear sense of the pain I can’t feel as having a sound frequency. At times it resembles the buzz sound the comes from an old fluorescent tube light. Here’s the link from Wikipedia on Postherpetic Neuralgia:
I took the time to read about viruses, and related subjects on wikipedia and elsewhere.
These days (since march 2015) I keep track of what I eat, do, sleep and medicine I take (and many other parameters) in a google-spreadsheet, to monitor my ‘complex’ asthma. It gives me indications of what works and what doesn’t, what seems to aggravate the condition and what is neutral. Most difficult thing is to ‘measure’ what you feel, and put a digit on it.
Wishing you all the best.
I’m beginning to see long term statistics now, and strange factors like the unexpected beneficial effect of stomach medicine i took for
Careful how you interpret that sort of stuff bert.
I’m sure you’d be familiar with the ‘hygiene theory’ of asthma – that it can be aggravated because the reduced exposure to pathogens in modern society can result in a hypersensitive immune system, thereby aggravating inflammatory diseases like asthma.
So it’s possible it wasn’t the medicine but the gastro itself that damped down your asthma. Or a random change in the level environmental allergens that coincided with your gastro. Or something else entirely.
A lot of things you can try – like diet, exercise, mindfulness, etc – have little probable downside so you can afford to do repeat experiments on yourself to confirm or refute their effectiveness. But when you’re talking stuff that costs money and has potential harmful side-effects it gets a bit more difficult to safely gather reliable data when your sample size is one patient.
there is surprise on data, there is no experimenting without doctor’s advise 🙂
It’s a good idea to keep track of how things develop at the end of every day. I’ll start planning how the parameters look…
‘wishing you all the best’ was supposed to be at the end of the reply …
I like your description of the different concurrent realities at seeming odds with each other. And amidst them is your personal pain. So sorry you are hurting T.
May you find ease very soon!
Thanks Val, things are quite distorted at times with this headache going for a month now. The new medicine Neurontin 100 mg has made a big difference but I’m still conscious of it being there, It has certainly changed the ordinary perception of the world…
How disorienting it must be. I feel for you.
Getting used to this new way of seeing and being in the world…
Hope you find a point of reconciliation with this new friend of yours, and do not suffer needlessly. Your writing however remains poignant and engaging. I loved the moment when you ascended into television stations you’d never been to before. That was priceless. And the description of the Korean game show translated to Thai. It just blows my mind. There is little that is more manufactured than game show caricatures. They are so surreal…
Thinking of you… Wishing I could be of more direct assistance…
Thanks Michael, ‘a point of reconciliation’, this is it. I’m on the lowest dose of the neurontin medicine, it’s effective but the headaches still come through at times. I imagine that there’d be a tendency to increase the dosage. As Cabrogal has explained, it’s addictive. So I’m looking around for an alternative, but also that reconciliation point you suggest. At the present time things look pretty bleak, the facade of the Game Show, cosmetics and garish behaviour kinda sums it up for me.
Hi T, fascinating comments. I began getting migraines, sometimes with weird visual disturbances, when I turned 60.When I get one now I take Imitrex and it really works when Tylenol and Aleve fail to touch it. They only give me 9 tablets a month, so i use them judiciously. Because I also have PHN, it occurs to me that maybe part of your stuff is migraine, too.
Hi Sonnische, I really don’t know if it’s Migraine, it comes and goes quickly, more like the stab of a knife and the sensation is gone in a few seconds. I’ve tried ibuprofen, tylenol and the only thing that works is neurotin 100 mg 3 times a day – read Cabrogals comment on this post on research that’s been done (?) on neurotin. For me it almost completely solves the problem, but I’m aware of the pain somehow beating on the wall to get in… it’s still here, I just can’t feel it
“The pain is an appearance, like everything else” is what helps me the most for like everything else pain is impermanent. I applaud you in this observation—already you are stripping away anxiety and fear that accompany pain–as you try different medication and methodologies. With this kind of awareness, you will discover what best suits your mind-body. You are in my thoughts, Tiramit.
Thanks Karen, maybe women who have experienced childbirth know about this. It’s something to do with being absolutely in the no-choice situation; the inclination has to be to turn towards it, rather than turn away. That acceptance brings ease…
wishing you a place of peace and quiet…if anyone can find it I think you will
Take Care…You Matter…
Thanks for your good wishes, I’m finding the medication is helping now more than it did…