Narcotics and pain meds

Migrainegirl wrote:Scobby

Sounds like it is time for a new doctor. If they want to leave you in pain for the next 8 months just to test the latest fad, they are not worthy of being called doctors. Sorry. That is just totally unacceptable.

Totally agree. What you were told, I was told. I've just turned 30 and want to actually have a life. After the neuro told me that if I wanted pain meds (gabapentin and naproxen are not in my book), he could no longer work with me, I said fine. See ya! I went back to my gp and his regimen allows me 18 triptans a month, compazine, gabapentin, naproxen and fioricet (which he made me promise to use sparingly). I have been doing herbals on my own and I have a life again. My stress levels are down because if I need something, I take it...I don't sit and have to ration it out. My pain levels are down and I have actual breaks.

There are other neuros out there and this one obviously isn't working for you...they are working their protocol, not working for the patient. Which are the worst - they are treating you as a number, not a person.

I talked to my regular dr. and she said the day is coming sooner than later that the FDA will allow only certain specialists to perscribe narcotics because of their street value....people are selling narcotics and unfortunately people like myself get in the crosshairs! She also suggested looking for another dr. that would work with me and agreed with what I have been through there is no reason that I can not continue doing what I do it is not out of the question--yeah!!!

Ya, like those people won't still be selling them?

http://braintalkcommunities.org/forums/showthread.php?t=96939

Thank you Cheryl for the link. It allied my fears.

If all that is required is a little education, I'm ok with that, (although I do wonder what "safety messaging" might mean). I'm just worried that too many doctors won't want to bother or that they will go too far. I guess time will tell.

Dear Scobby,
I have had constant daily head pain for starting on my 39th year. Not one moment with no pain, and the daily pain is never below 7, often at 8 or 8.5 for weeks and even months at a time. Several times a week, I get even worse pain---from the weather, a food mistake, having the elavator doors open on a floor where paint or chemicals were being used, noises, flashing lights, etc.

I was given everything BUT narcotics for decades. The first 7 years I was told I was responsible for my own pain, I was crazy. I had my drs send me to a psychiatrist of their choosing---he told them I was not nuts, to keep searching for the cause of the pain. They told me they did not accept his diagnosis and I said, pick another psych.

By the way, I was seeing drs at Johns Hopkins and the first psych they choose was the head of the Johns Hopkins Pain Clinic. But THEY knew better---this group of one internist and one allergist and one Ear, Nose, and Throat dr.

Second psy. said the same thing. They did not believe HIM. Told them to pick and 3rd, they did. He said the same thing, and they STILL did not believe I was mentally stable.

The problem was, they did not know what to do for me. Their initial 10 drugs or so did not help at all, most made me much worse---which was REALLY a sign to them I was nuts. They actually said to me, "Other people don't get worse on this med."

I finally realized they did not want to Rx narcotics, which they KNEW would work, because while in the hospital for 3 weeks of testing, I had been given pain meds which did help a tiny bit.

Decades go by. I tried every kind of dr, therapist, acupuncture, chiropractor, holistic drs of various types, dentists to check for TMJ, muscular therapists, neck specialists, had several IV or shot therapies for 5-21 days while in a hospital, tried the Mayo Clinic, Diamond Clinic, you name it, I went to see the dr. I once flew to California every weekend for 8 weeks to be treated by a head/neck pain specialist my muscular therapist recommended when he could not help me after 3 visits a week for $60 each for 5 months. Then I spent all that money for plane fare, car rental, and two nights in a motel for my CA "experiment" and NOTHING, no help at all.

After 30 years had gone by, I had tested over 110 drugs. Many more than once. My hair fell out several times, my speech was slurred for months at a time, my blood pressure was so low I had to crawl to the bathroom in the middle of the night or else I would fall for sure. I had so many fainting spells resulting in gashes in my head, that the residents at the local ER would argue who had to cut through my thick hair to stitch my head together when I came in yet again.

I can't tell you how often a dr would want me to try a drug I had taken once or twice for months. I would ask why he/she thought it would work THIS time. "Because I am giving it to you." Said with a straight face.

They would tell me I really did not want to get well if I did not take the drug for the second or third time.

And I tried each drug for at least 3, and usually 6 months. Oh I was the model patient. Despite side effects that left me a zombie most of the time and/or with other awful side effects, the drs kept insisting I HAD to give each drug a long chance because it might just work, but just take a long time to take effect.

That is nonsense. I have since read and read and read about this "theory" and any drug that will help you will almost certainly show itself within a week or two at MOST. Maybe not the full effect, but something positive would happen. I was hospitalized by the diamond clinic in their wing of a Chicago hospital a total of 9 weeks. They had 75 beds, but usually had 95 patients there at a time. Over those hospital stays, I got to know more than 800 headache victims. Most stayed 7-10 days, and we all gathered together throughout the day and the sleepless nights and told our stories.

I have heard that the diamonds now give some narcotics, but at that time----late 70's through mid 80's, NO one got any narcotics. Even people who were vomiting and screaming in agony from their pain were never given any pain meds.

We ate and had various lectures and therapies together. I saw many many women get better within 2-3 days of their new drug. Plus, in the hospital, they never tested drugs for weeks. If you were not better in 4 days, you were switched.

I gradually came to realize that the "take it for 3-6 months" idea was to stall me and keep me coming back and, of course, many drs said I was to blame when drugs did not work.

During this time, Scobby, I did many many "clean-outs" from whatever meds I was taking. The most pain meds I was given were 50 percodan a month, but not often. When I fell and hit my head and was unable to get out of bed for 7 months, the diamond clinic gave me a total of 6 Vicodin for that entire time. When I called for more after 3 months, they said I should be fine by now.

There were many times I did not see a dr for a year or even 2 years. No meds at all. I was never better for my clean outs. Not one bit. And I was REALLY cleaned out after 2 years.

I was in a taxi accident in 1989 which again escalated my pain for a year or so. About 12 years ago my constant pain went even higher

Finally, after about 30 years or so, I was started on long term narcotics. My dr at the time said these were great drugs and that there way no ceiling. You just get upping the dosage until you got well. Except that there WAS a ceiling. He stopped me at a certain point and I would have to beg for months to get an increase. Plus, I had to travel to his office every month.

He often came out into the waiting room to write me scripts and would act like I was a huge imposition on his day. "You have no idea how many patients I have to see today, he would tell me." As if I was just nothing.

AND, he got paid $93 each month for the 60 seconds it took him to write the script, and $13 more from me. I was so broke living in Manhattan during this time, and asked him if I could keep the $13 a month from my co-pay. You don't ask something this unless you are in dire straits, it is so humiliating. He looked me right in the eyes and spit out, "NOPE", and turned and walked away from me.

That is when I decided to do another clean out. I had been sick 32 or 33 years at that point. I was so disgusted at being treated like a worm by this horrid man, that I would rather be without the meds. Besides, he never gave me enough to help me anyway. I was still in huge pain every second.

The clean out proved nothing to me. So many drs want you to do this because they do not want to Rx narcotic meds. Some moron wrote that theory about the receptors being blocked, but that is nonsense. But so many drs latch onto it to defend their not wanting to Rx the pain meds we need.

My current dr was a researcher before he became a neurologist. He studied how various drugs worked on the brain. I don't know about any of you, but when I would ask my various drs how a new drug was going to work, they would just shrug. The actual drug co publications that came with the meds stated clearly that "these are THEORIES about how this drug works."

My dr does not know about every drug, but he does know so much more than any other ever has. He told me he became a neurologist because he heard story after story from patients like me who had been abused by drs in their horrid treatment of us. And let's be clear, it IS abuse.

He has me on huge amounts of 3 meds, but it is far too late in the game for me to get much help. I am only slightly better than I ever was before. The meds often prevent my pain from escalating from an 8 to a 9 or 10, but not always. My pain is still at such a high level that I don't know how I have managed to live with it all these years.

And 3 years ago last month, I moved from my apt in Manhattan, where I could stay in bed when I desperately needed it, I moved back to a suburb of Chicago to care for my mother, who was beginning to show signs of Alzheimer's'===severe late stages now, and my older autistic brother. It has been hard.

Thank God for my wonderful dr. He is a better human being than he is a dr. And he is willing to up my supply, but I just do not want to go any higher.

So, Scobby, my advice to you is, RUN from any dr who gives you that absurd theory. It is just an excuse not to give you pain meds. He/she may actually believe it is true, but if they were truly well-informed, they would know that theory has NEVER been proven.

Hope my tale has been of some help to you. Not once has a clean out been of the slightest value to me. In fact, I know think I was an idiot to believe that it would help me. You see, I too, was brainwashed into believing the theory your dr is spouting. Actually, I was so desperate, I was willing to try anything, even withdrawal that was excruciating on my own with no backup meds.

Keep us up to date on how you are, and I know how hard it is to look for a new dr, I sure do, but I am afraid you must.
Good luck,
Mishkyn

Mishkyn,

Of all the rotten stories I've heard here that is perhaps the saddest. How truly awful! There is no excuse for doctors to act that way or make such idiotic claims. Sadly doctors are not the wise, all knowing beings we have been led to believe they are. They are just human, with all the faults and failings of other humans. Some are wonderful and caring and recognize the limits of their own knowledge and of science. Some are arrogant jerks who would rather blame the patient than admit they dont know something. Unfortunately there is no way to find the good ones without a lot of trial and error. And people in some locations don't have a lot to pick from unless they are able to travel long distances or have a lot of financial resources. We also have to learn to stick up for ourselves and vote with out feet when we get one of the jerks, or just illl informed.
I totally agree with your advice to RUN from that doctor.

Mishkyn
your story was very hard to read without gasping!!!
I am sorry you had to go thru ALLLLL that and that is way too much!

But by reading your story, you have saved me months maybe years...my step father was helped by John Hopkins, so soon my parents will be on that "band wagon" urging me to go there just because Dad was helped. And we all know what works for one person doesn't mean it will work for you.

The more I think about it, pray about it, ask about it,....to just stop narcotics and go thru the "hell" in my heart of hearts I feel isn't going to help, only hurt...sometimes I feel like I have to go thru this just to "show them" that I am right and they are wrong. But at what price? What is suggested is too high a price for me.

Now the search is on for someone/anyone that will work with me and for ME!
Thanks for all your support-everyone!
Scobby