I've suffered from occipital nueralgia for over 10 years now. Luckily mine isn't as severe as it ca be for some. I'm able to self treat by applying pressure when it gets really bad. So I manage and it doesn't effect my life much aside from usually being a cranky son of a bitch to my wife, which I do regret.
Once a few years ago I had an "occipital nerve block". That's where a pain specialist injects novacain into the nerve. I was pain free for about a month, it was marvelous. But insurance didn't cover it so I never got one again.
About a month ago I woke up feeling like I was high or something. I was in physical bliss. I realized it was the first time in many years I'd been totally pain free. It made me kinda sad.
A couple of months ago, I had a condition that required a week's worth of prednisone.
Not a particularly pleasant experience. But one side-effect that was remarkable, to me: The decades of accumulated aches and pains "went away" while I was on it. A chance to observe, through the sort of light haze the drug left me in, just how much and varied the discomfort was that had accumulated.
My primary response to the question of how to control pain, remains: Pro-active health care and preventative medicine and practice. No, it won't stop all cases, but those we can prevent, we should. And currently, too often don't.
Too much is focused on "the future." The child that will be. The society we will create. The career we will -- hope to -- have.
Until a primary focus is on the present, and taking care of what is at hand, my support for some "future promise" is limited.
Among other reasons, because if you aren't healthy and able, you'll have less chance of building it. Or hanging onto it. Or enjoying it.
I'm all for taking care of ourselves -- individually and as a society -- for the future. But that action takes place in the present.
Until I see a party exercising this -- demonstrating it through actions -- my buy-in is limited.
P.S. I guess I went kind of OT, here. I just see so much needless, preventable pain, these days. I really hope for better pain management for those who have pain. And I don't see having it as some "fault" that invariably could have been "avoided."
But I see a lot that could be avoided. Steps that could be taken, by communities and society -- but aren't.
le-mark I suffer from occipital neuralgia as well. I've learned from experience that you don't need to go to a pain specialist to get an occipital nerve block. The right neurologist will do it for $100ish cash.
I wish our medical system trusted patients more. Why not tattoo a tiny dot on the scalp where the patient needs to inject, train him, and then send him home with the Novocain.
Have a checklist of warning signs that should terminate treatment or require a checkup.
After watching this video, I don't think I would be able to do it myself, or even to someone. It looks complicated. I had injection to a thigh for some time which was fairly easy (you just need to make sure you don't get a vein) and even that was tough.
Although, I agree that if someone can do it themselves or has someone to do it for them, then they should have an option to do it after going through some training.
Oh, geez. Pain is a messenger. It tells you something is very wrong. We need to start finding more ways to effectively treat underlying causes and stop focusing on mere comfort. That sort of medicine is what they do at hospices waiting for you to die.
I spent 3.5 years in constant, excruciating, PLEASE KILL ME NOW pain. So I am not being callous here. I am no longer in that kind of pain because I inadvertently began treating the underlying cause.
I am galled by the constant search for better ways to go numb and stop feeling the pain. I can't understand how the serious damage this guy has suffered doesn't serve as a dire warning that this is the wrong path. The right path is to wonder WHY people are in so much pain and solve THAT.
Can I ask what your condition is, and what you have done about it?
I agree it is best to consider the underlying cause, but sometimes that isn't feasible. Take psychosomatic pain, which is a massive issue, but very misunderstood by doctors and patients alike. It is arguably the largest cause of chronic pain, and yet there is virtually no information or research on it, and patients are mostly left up to themselves. A few figure it out themselves, or discover John Sarno's books, but the majority are just given painkillers.
I'm not the OP, but I've been living with excruciating neck pain due to degenerated cervical vertebrae and disks, and I've tried everything for the last 10 years, including pain killers, 4 years of chen style tai chi (was very martial, probably made it worse), 2 rounds of physical therapy, strength and cardio training, a standing desk, supplements, etc. Nothing worked - until a coworker introduced me to Mysore Ashtanga Yoga. It's like magic - my neck pain is almost completely gone. The yoga is very strenuous, and there is a ton of bending of the spine. It hurt a lot at first, and I got a lot of numbness in my arms and hands. But after about two months it all went away. It's amazing. It's not a cure though. A couple days without practice and the pain is back. Not as intense, but it's there. The practice must be daily.
Go to a teacher and make sure that teacher is a responsible person. I did Ashtanga for a while and some teachers have the tendency to force people into positions they are either not ready for or should probably never do. And when someone gets injured they are told to work through it. This often works but sometimes it makes things much worse.
If you are genuinely curious, it is trivially easy to find out my diagnosis and get a general idea of what I do to manage it. It is also trivially easy to find contact info and engage me elsewhere, not on HN. I have no plans to discuss it further in this thread.
I actually searched your blog for "pain" and "chronic pain" and didn't come up with anything, so I don't think it's "trivially easy", hence the reason I posted. Due to your attitude, I'm not really interested in pursuing it further though.
There are cases where there's not really anything you can do other than treat the pain, due to current medical science not knowing the answer or another solution otherwise being infeasible.
I am a former homemaker. Given how far I have gotten by following the principle of treat the underlying cause of the pain, presumably actual doctors and scientists could get a great deal further if that principle was a driving force in their work. Instead, they tend to say shitty things to people like me, such as "People like you don't get well. Symptom management is the name of the game."
Yeah, dude, if you make zero effort to get me well because you are psychologically comfortable with writing me off for dead already, it should come as no surprise when the lack of effort leads to a lack of improvement.
Please don't email me about this comment, but have you given much consideration to the possibility that your particular form of the disorder you have happens to be unusually mild?
Yeah, that totally explains why I am no longer in constant, excruciating pain and completely justifies the idea of not bothering to try to treat the underlying cause for serious disorders not currently understood. Let's go with that.
Well, the only point I am trying to make is that treating the underlying cause of pain is better than just taking pain killers. If you aren't trying to refute that, what on earth is your point?
You constantly speak to the potential value of your experience and how doctors ignore it. If you have a particularly mild mutation, it's hard to extrapolate from what you do to deal with it to benefits for people with mutations that manifest more severely.
I speak from experience. Why that is such a problem for me to do is a thing I cannot fathom. Other members of this same forum routinely speak from experience as well without that being a problem.
Yes, I have a mild form. But I nonetheless have gotten off many drugs and grown healthier when that is supposedly not possible. So has my son with the same diagnosis. And I have known people with more severe forms who benefited from what I know. So I have good reason to believe that it generalizes.
But when I began to get better, my physician expressed no curiosity and simply scheduled me fewer appointments. So, that leaves me with sounding like a quack in online forums while trying hard to tread lightly so as to not wind up like Semmelweis https://en.m.wikipedia.org/wiki/Ignaz_Semmelweis
I say again: If you do not disagree with my point that addressing underlying causes is better than pain killers, why on earth do you need to try to dismiss the personal experiences that created that opinion? What does it matter if my deadly condition kills more slowly than average for my deadly condition?
You removed the word obnoxious from the comment where you asked me to please not email you. I think you know full well you are being dismissive and, to add insult to injury, framing it as me being neurotic.
I post comments and articles about a great many things. I write blog posts about a great many things. Most of it gets essentially ignored. My comments on certain subjects get big (often negative) reactions, and not because I am trying to jerk anyone's chain. If I had the power to engineer social outcomes to that degree, I would use it to put money in my pocket and stop being so poor.
Neuropathy is more common than you think. You are GREATLY overgeneralizing to the point of ignorance by arrogantly assuming that all sources of pain fit the same profile of "something wrong with the body that could be fixed if we knew what it was".
I deal with sciatica that is at times debilitating. I also have fusing disks in my lumbar that cause massive, constant back pain. I often can't sleep for more than 6 hours because the pain becomes too great to remain horizontal.
I know what is wrong with my body. Sciatic surgery is a big financial gamble, not even on my fiscal radar, and don't get me started on lumbar surgery.
So I exercise. I try to stay on top of research in those areas and maybe one day, I may even be wealthy enough to afford adequate healthcare and see specialists. But what on Earth makes you think you have the right to tell me I shouldn't seek healthy ways to manage my pain? What kind of privileged family healthcare plan are you on to have such little empathy towards those in extreme pain who can do little about it?
Be careful about the path that YOU are headed on, my friend. I watched someone become completely caught up in the Paul Chek health cult and they now think every single pain and disease (they like to call it "dis-ease") anyone experiences is their own fault for not taking cold showers and eating expensive designer health food. It was horrifying to watch such an empathetic "people person" become so close-minded and arrogant towards others to the point of losing their friends, thinking they are "helping" these friends by showing them the true path.
You have to accept some people are predisposed to, and more sensitive to, pain and disease and they deserve to enjoy some level of comfort.
The problem is, many doctors ate not diligent enough in finding the actual cause of neuropathy. They're are plenty of causes, some are fixable. Typical one is nerve entrapment or injury. (Like yours.) Others are viral, some are autoimmune. (Both imflammatory.) A few are genetic.
Surgery being expensive? Compare with disability adjusted years. Insurance not covering is a really bad bet on the dive of the insurer. It is not as much a gamble as some think. Quick check says over 84% patients experience good to excellent results. Further, less than 20% have recurrent issue that requires more surgery. (I'd say usually genetic related.) And even then there are further good surgical options, spinal fusion and artificial disc replacement.
Treatment in each of the cases is different and any of the above can be chronic.
As to this specific attempt, they problem is that blocking pain completely and globally is dangerous and is why even opiates don't really do it. Useful discovery nonetheless, but I'd expect serious side effects.
I'm confused about your statement about opiates. You make it sound as if they are designed to not block pain completely, when really it just works out that way. Are you referring to the neurotransmitters that opiates mimic, and their role in pain blocking?
I can't afford decent health insurance right now. I know that in the long-term, surgery is always the better option than allowing further deterioration of my condition, but it simply isn't a possibility for a lot of people. I don't collect disability because I enjoy my field but lately the idea has been tugging at me more and more. I just fear, if nothing else, health coverage denial in my later years because of it.
Maybe you should tell us how to find the underlying cause. My girlfriend had a nerve cut in her knee during a surgery and since then she has neuropathic pain in her leg. What do you recommend to do?
You have a long standing habit of only replying to me to shoot down whatever I am saying. Such a pattern of behavior is basically a subtle form of harassment and character assassination.
I don't really expect you to stop just because I point it out, though I would be delighted if that were the outcome. But maybe other people will notice that what I am saying here is true.
"Treat the underlying..." my God, man, you aren't suggesting we abandon bloodletting, are you?
Allopathy historically has been composed mostly of palliatives that exacerbate the underlying condition. (Medicines that actually exacerbate the condition they seem to treat are incredibly profitable over long periods, of course.) France finally had to forcibly close bloodletting schools of medicine, going into shock due to bloodletting was such an effective palliative, medical practioners (and their patients) just weren't going to give it up.
Be skeptical anytime you hear "cure" for any medical condition, especially with regard to something as enigmatic and complex as pain or the nervous system.
And no, another pill a patient has to take every day is not a cure.
I'm pretty sure a patient that is suffering from chronic pain would happily take a pill if that would make the pain go away without the risk of addiction.
Regardless taking a pill masks the symptoms, it is not a cure. Pain is not like a bacteria and the pills are not like a targeted antibiotic. You do understand that, right?
Chronic migraine sufferer here...would happily swap the pills I currently take daily just to reduce the frequency of my migraines for one that eliminated them.
Migraines are ugly. I used to have a business partner that suffered from chronic migraines. Onset would be so quick that he wouldn't be able to drive home so I got to drive him whenever this happened.
It seems to me that the only possible "cure" here would be to replace the defective gene.
That said, anything that can eliminate extreme pain (or help the people who don't feel pain at all, causing them to severely jack themselves up without even knowing it) would be a friggin' blessing, even if it is a "pill that you had to take every day".
My personal opinion is that doctors and patients should be able to use anything at all that works for them, assuming risk is understood sufficiently. It is, frankly, nobodies business but theirs.
No, it is not a cure. But until a cure is found, I'll certainly take it as a 2nd choice instead of living with the pain and being stubborn about it.
I did resist pills as the answer to my chronic pain for years. And I still refuse to use opioids as the answer. But we did find a non-opioid med that reduces my pain, so while I wish there was a better answer... pills give me my life back. I'm able to exercise again. To play with my kids. To do my job. It isn't my preferred solution, but I'm not going to get idealistic about it and go back to sitting around all day in pain while waiting for the perfect answer.
Once a few years ago I had an "occipital nerve block". That's where a pain specialist injects novacain into the nerve. I was pain free for about a month, it was marvelous. But insurance didn't cover it so I never got one again.
About a month ago I woke up feeling like I was high or something. I was in physical bliss. I realized it was the first time in many years I'd been totally pain free. It made me kinda sad.