I need help (facts and advice) (Very Long)

Miscellaneous and Personal Stuff I Must Share
1

I’m not in the habit of foisting personal information on you folks, but I’m afraid you will need some background in order to understand the situation. Please bear with me.

When I was about seven or thereabouts, I realized that there was no time during which I did not have a headache. These were not acutely painful, but they were constant, low-to-medium (with occasional leaps into excrutiating) pain that was always with me. It was at that time that I began the series of tests that has continued to some degree my entire life (I am 48). Nothing has ever shown up except some tiny scarring on my brain that could indicate migraine (although it could also indicate stroke, but I’ve never had any other symptoms and I take forever to clot). I long ago came to the conclusion that my headaches were a combination of sinus and tension headaches, with occasional real migraine or really nasty sinus headaches.

When I was 17, my doctor gave me Darvocet N 100. Although I have tried many other meds since then, Darvocet has been the most constant and frequent because it has had no side effects (not even pleasant ones) for me, and has been fairly effective. Muscle relaxants have no effect whatsoever on me, N-Saids (anti-inflammatories such as Ibuprofen or Naprocyn) have no effect on me except for things like toothache, and long term use of an NSaid actually did kidney damage (I was very lucky - my kidneys returned to normal functioning after I stopped taking the NSaid for several months). Tylenol by itself has no effect on me. The various migraine-specific meds have no effect on me. Anti-depressants have no effect on me (are we seeing a pattern here?). I have a very high resistance to drugs of pretty much any kind, and seem to have always had. The only meds that have helped me have been narcotics - Darvocet (Propoxyphene), Lorcet (Hydrocodone) and Codeine (I’m not wild about Codeine, as it makes me feel a bit loggy).

For many years I was able to get prescriptions without too much difficulty - I’m a respectable middle-aged woman who obviously isn’t selling them on the street, and the docs were able to do blood work regularly to ensure that the acetaminophen wasn’t harming my liver or kidneys. Since my dose wasn’t increasing, they weren’t terribly concerned about addiction, especially since, when I have stopped taking it, I don’t have any ill effects except the headaches. (These continue over many months, btw, so that eliminates the idea of the headaches being a boomerang effect from the drugs. And I wasn’t taking drugs at the age of seven!)

But these days it’s different. If you look at the list of controlled substances in the US, you can see that they tend to have one thing in common: they have the potential to have pleasant side effects for some people. Apparently this is a terrible thing. In any case, my GP is now afraid to prescribe it for me, despite the fact that he personally would have no problem in letting me have it. The neurologist I was going to for some years, and who was handling my prescriptions, went financially belly-up and disappeared off the face of the earth.

I went to Jefferson, a well-known headache-specializing pain center in Philadelphia. Their idea of a solution was to put me on some kind of IV for three days to “get me off” the Darvocet, after which they would try a variety of medicines to address the headaches. Bottom line was, I could spend a whole hell of a lot of money in order to have a 50% chance of ending up as well off as I am with the Darvocet. Given my experience with non-narcotic meds thus far, this “solution” didn’t tempt me.

I’ve talked to other doctors, and basically gotten the same story from most of them - they agree that continuing with the low-level narcotic, as long as my dosage doesn’t increase and I am monitored to see that the acetaminophen isn’t hurting me, is fine, but they are afraid to prescribe it for fear of getting the AMA and/or the government down their throats. Then there are the few who won’t prescribe a narcotic for almost anything; this appears to me to be a religious attitude, in the sense that it is based on a belief system rather than any facts. These same doctors would be happy to give me unlimited NSaids despite the fact that they have injured me in the past, have no problem with the fact that I am taking, for example, thyroid medicine that I will take for the rest of my life. They are apparently indifferent to the fact that it is the acetaminophen in the Darvocet that poses the greatest physical risk, and I can get that in unlimited quantities in any drug store. They don’t care that my dosage hasn’t increased in thirty years. No, it’s a narcotic, and therefore is bad.

Basically, I’m being “protected” to the point that life is almost not worth living. I don’t know why the US is like this, but as I understand it, it is practically alone in its attitudes towards such drugs.

For now, I am getting meds over the internet. It’s a lousy solution because it costs WAY too much, and because, since it is an American source, the doc is still unable to prescribe the quantity I need (I have received enough for two/day, when I need 3-4/day - this is hydrocodone rather than propoxyphene, because the doc was concerned about kidney damage, and for some reason, hydrocodone wears off faster for me than propoxyphene does). I tried a European source, but the package, which they claimed to have shipped, never arrived - they did refund my money, bless their hearts.

I’m beginning to think my only solution is to move to a different country. I am a senior level Oracle (PL/SQL) programmer, so I have some degree of marketable skill. I don’t really want to leave this area, as I have elderly family, but I’m beginning to think I don’t have much choice if life is to remain bearable.

So, my questions are:

  1. Is there any way I can get some kind of waiver that would allow me to get the meds I need prescribed in the US?

  2. Are the regs on low-level prescription narcotics more liberal in Canada, the UK, or other English speaking nations of which you are aware?

  3. I don’t speak Dutch, but I’ve never met someone from the Netherlands who didn’t speak English. Could an English-only speaking person emigrate to the Netherlands and get a job?

  4. How hard is it to immigrate to such countries?

  5. Do they need Oracle programmers? Do you know of any head-hunting sites?

Obviously none of this would be happening in the immediate future (I’d need to sell two houses, for one thing!), but I’m quite serious about considering it. I don’t really know what else to do. I’ve considered trying to find a doctor just over the Canadian border (assuming they are more liberal there) and visiting, say, quarterly, but I don’t even know how I’d go about finding one who could help. It’s a funny thing, but if you call a doctor and ask if s/he is willing to prescribe narcotics, they tend to raise their eyebrows a tad. Go figure.

Can anyone here provide answers and/or advice? Please, no dietary supplements, massage therapy, chiropractic, accupuncture, etc. First of all, I’ve tried most of 'em. And second of all, I am highly skeptical about “alternative medicine.” Let’s just not go there, OK? I don’t have the energy to argue.

Thanks.

2

Technology is different now from what it was 40+ years ago. When was the last time you had your head examined? (weak attempt at topical humor) Is it possible that the scarring identified back then could have been irrelevant to an otherwise (then) undetectable issue?

Dunno about drugs & Dutch. Sorry.

3

The tests have been ongoing. I had my head examined within the past two years - that’s when the scarring was detected. I had extra tests to eliminate stroke as a likely cause.

There’s at least one school of thought that believes that the kind of chronic, constant headache I have is a form of migraine. Alternatively, as I mentioned, I have had comparatively less frequent, extremely severe headaches that may have been migraine. That’s probably the scarring.

4

Not to be unkind, I’m sure you have pain, but the drugs you seek are indeed big red flags.
Try a different neurologist. Go with the intention of stopping the headaches, not just getting your drugs.
You probably are addicted, but, finding the source of your pain and dealing directly with that is most important.
Physicial withdrawal is 3 to 5 days, but you might need some psychological and emotional support to let go of the drugs and maybe even the headaches.
I wish you well. Good luck.

5

Reconsider the Pain Center’s proposal. I did not see in your OP that you have been treated with specific migraine meds such as Zomig or Imitrex. If you haven’t, then I think you would be well served to try these. It sounds like this may be the direction the Pain Center was heading but wanted you detoxed from the Darvocet first. If you have tried them, but only in conjunction with your use of the Darvocet N-100, then you might have a better response after getting off the Darvocet. With the degree of chronicity you describe you could be having rebound pain from your medication (the Darvocet) because it is really intended to treat acute episodes of pain and not chronic pain.

Step back and look at what you are contemplating. You are thinking of selling your homes, leaving family and moving to another country. This extreme points to addiction. Before you make these serious moves at least give a Pain Center the opportunity to treat you with migraine-specific meds sans narcotics. The response is going to be different than trying them with narcs because they relieve the pain differently. Please do this for yourself.

Chronic pain can be a real bitch. :frowning:

I wish you the best. Good luck.

6

I don’t know anything about solving your problem, but I am astonished that you apparently have a documented history of *31 years * of using the same drug in the same amount, and benefiting from it, and all of a sudden you’re being cut off? Have the laws changed recently? What’s different? I agree with the poster who said your ultimate goal should be to find out what’s causing the pain and find a way to fix it, but meanwhile you shouldn’t have to suffer. Pain relief is becoming a medical specialty. Maybe a doctor in that specialty–obviously he’s not going to hesitate to prescribe pain medication when warranted–is someone you could seek out.

7

Judging by news articles I have read over the past few years, Canada seems to have the same problems with prescribing narcotics for chronic pain relief.

8

You say that you can get off the darvocet by yourself. You admit the headaches aren’t excruciating, just mild to moderate but nagging. Why can’t you detox from the darvocet yourself and then try the Philadelphia specialist. It won’t be pleasant, but if you aren’t addicted as you say, you should be able to handle the pain while you try different meds.

Like others, I worry that you’re willing to completely change your life because you can’teasily get narcotics, especially since the pain is, in your words, “not acutely painful”. Whether or not you’re addicted, you’re definitely dependant on the narcotics.

I suffer from chronic headache, too. I wish you luck.

StG

9

/Rant

I just wanna say #(%&#(%&#(%&#(%&(#%&*#%!!!

Doctors down here are the exact same way and it drives me up a wall. No narcotics, ever, for anybody, and if you ask for them you’re automatically a drug addict. Have chronic back pain? Tough shit, here’s some Ibuprofen. Torn up from childbirth? Just take Motrin. If a doctor here deigns to send you to the pain clinic, you’re going to wait 6 months to get in. Until then you’re just supposed to put a band-aid on your inflamed sciatic nerve, I guess.

RARRRRRRRRRRRRRRRRRRRR.

I hate drug addicts who ruin things for people like you, and I hate doctors who allow their patients to suffer because they’re so damn afraid they might get sued.

/Rant off

10

I’ve had these headaches for forty years. Do you think I haven’t tried various things?

I’ve been off the drugs for much, much longer than 3-5 days, not once, but probably a dozen times over the years. I have not had any physical withdrawl. I have had headaches.

I’ve probably had more years of psychological counseling than you’ve been alive.

smartini, I have tried migraine meds, in conjunction with and without Darvocet.

How many months do I have to go without Darvocet before my headaches are not considered rebound pain? How does 18 sound? Been there, done that. It completely sucked.

Folks, looks at what you’re saying for a moment and examine your own beliefs. I have an inexpensive treatment for a chronic problem that does not interfere with my functioning in any way. The risks associated with it are primarily those of the acetaminophen, which I could be taking in much larger quantities perfectly legally. Why are you so concerned? Because it’s a narcotic (ominous horses neighing in the background)?

If this med did not have the potential for pleasant side effects, would you be so concerned? What does that say?

Look, can you accept that as a fairly intelligent, quite rational person who has lived with this problem for forty years, I have looked into the alternatives? At this point, I’m not looking for alternatives any more. I’m sick of trying to find a solution to a problem that, as far as I can tell, is already as solved as it’s going to get.

observer11, I scheduled an appointment with a pain specialist. A week after I scheduled it, he called me telling me he had decided to get out of the biz; it was getting too tough. As far as I can tell from what I’m being told, it’s not actually the government, so much as the AMA, but I’m not sure. All I can tell you is that it has gradually gotten harder and harder over the past thirty years.

StGermain, I’m happy for you that you can cope with chronic low-to-mid-level pain without help. For me, if it were occasional, I could deal with it. But it runs me down over time - it’s the constancy of it. Yes, I’m dependent on the narcotics (ominous horses neighing in the background). I’m also dependent on my thyroid medicine. An awful lot of people are dependent on all kinds of medicines.

The doctors would be perfectly happy to let me be dependent on NSaids. The fact that they would probably kill me within a couple of years is apparently unimportant; they don’t have the potential for pleasant side effects. In fact, I wouldn’t even need a doctor’s help; I could kill myself on Ibuprofen or Naprosyn (however you spell the damned stuff) without a prescription.

Do I seem extreme to you? All I can tell you is that chronic pain has that effect on me.

Abbie, bless you! This is the first post I’ve ever seen of yours with which I’ve been in complete agreement. You might want to reconsider your political affiliations. :smiley:

11

Oh, and Bookkeeper? Thank you for actually addressing one of my questions!

12

Oy! - You haven’t answered my question. Why won’t you try the Philadelphia pain clinic’s program? If you can cut the cost down by detoxing yourself (the one caveat you mentioned is the cost) why not give them a chance? They may come up with a drugh or combination of drugs that works for you. You’re looking at half a week without your daravocet and you said the pain was minimal. Why don’t you at least try?

StG

13

I didn’t make it clear what was involved. The three day IV was the detox - and yes, I can do that myself by suffering for a month. THEN the real fun begins. As I understood it, it would potentially involve months of fooling around with various cocktails, trying to find something that might work. Those cocktails are the expense I was talking about.

StG, not a soul in the place, even the program’s inventer and biggest booster, could claim (and I asked quite specifically) that I would feel better at the end of this program than I do with my current meds. Its sole benefit, other than lining the pockets of both the center and the pharmaceutical companies, was to get me off narcotics [insert Frau Blucher horses here]. It seemed to be a racket, designed to solve a problem I don’t have.

NO ONE, not one person over many years, has been able to give me a reason why I should be concerned about the meds I take (other than long term use of acetaminophen, for which I am monitored carefully) other than “But…it’s a narcotic!” or “It’s addictive!”

I’ve had the problem all my life; I expect to have to medicate it all my life. My dose hasn’t increased, and I don’t have withdrawl symptoms when I stop, just the problem I’m taking it for in the first place - headaches. If that makes me addicted, I really couldn’t care less - I’m a highly logical and analytical computer programmer making about $75K a year; it doesn’t seem to be having too much of an impact on my functioning, does it?

You are welcome to think that I am stupid, in denial, self-indulgent, or anything else you like. But of the options I have, low-level narcotics are the only thing I know to be effective, cost-effective, and comparatively safe. I’m not looking for alternative treatments here.

Thanks for your interest, StG, but you too are trying to solve a problem that as far as I am concerned is not a problem.