a huge vent after seeing a new neurologist.

dr. robbins, i'd love your opinion of this. i'll try to make it brief and as non-nasty as i can.......

thought i'd try a new neuro; haven't seen one for 3 years or so. this one is relatively young. HE HAD HIS MIND MADE UP BEFORE HE EVEN SAID HELLO, by reading the short history i had filled out.

he pegged me as an uninformed, internet-influenced, basket case of "addictive personality", and MOH. yes, the dreaded discussion of medication-overuse headache. (by the way, isn't addictive personality an outmoded term? shouldn't it more properly be "addictive physiology"? i don't know; i suppose the jury is out on that one still).

he would hardly let me get in a word of correction to his jumping to conclusions, when i was trying to impart my 41-year history. he LAUGHED when i said 41 years, like i wouldn't have a clue how long i'd had these monsters??

i told him that i'd never had a headache before 1969, and they started horrifically after i'd had an unknown disease which put me to bed for a month, with 3 babies i couldn't take care of. he dismissed this bit of info, as well as nearly everything else i said.

i'm trying not to spit nails right now, but i am just a bit upset. YES, i can entertain the possibility of MOH, but he didn't let me tell him that for the first 25 years of migraines, i didn't take so much as one aspirin.

but i also didn't have a headache of some kind every day for those years, so he might indeed have a point there. my medication overuse has been ONLY triptans and nothing else, because nothing else has ever touched the pain i have.

i didn't "believe" in drugs then; tried all kinds of alternative stuff that didn't work, and finally when triptans came on the market, i found them to be my godsend. excuuuse me, i suffered tortures for 25 years, and please don't tell me i'm a wimp. (in so many words).

his plan for me would be to go cold-turkey on the triptans, as i take far more than 10/month (which he said was the "limit") OR i could come to his office and get IV's daily, which would consist of 4 drugs and some fluid. i can tell you the four drugs if you are interested in his protocol; i have no idea if it is sensible or not.

since he could tell that i really didn't think i had MOH, he was pretty sure that his IV plan would not work. because, he thinks, one must have the right mindset and 'BELIEVE' it's going to work. the ol' placebo effect. this, to me, isn't medicine, it's woo-woo stuff.

enough.

pen, you'll be interested in dr. robbins' input, also. dr. r., do you think that the neurological community is still "split" on whether triptans cause MOH or not? or are some of us here just trying to delude ourselves that it's fine to take lots of triptans, because we have nothing else that does diddly for us?

thanks, dianne

Sounds to me like you have enough information to diagnose a bad doctor. This syndrome is caused by a desire to 'know it all', coupled by a dread of not knowing how to treat someone. This bravado happens often in the inexperienced, but is compounded when the ego is too weak to allow learning to take place, thus it gets worse with age in some people. This guy is a malpractice suit waiting to happen, and he will never understand why. Medical error is the 7th leading cause of death in America.

The best doctors are good at gathering all the relevant data without a rush to judgement, running tests to rule out possibilities, actually listening to the patient, showing compassion, and being willing to keep trying till they get it right. So as frustrating as dealing with that condescending A-hole was, count yourself lucky that you got away from such a bad doctor and fire him. Write him a letter telling him so if you like. It will get some stress off your chest and you'll feel better.

Run, don't walk to a Dr who will listen to you and respect you. I have tried preventatives with my new neuro that I didn't think I would try, but ONLY because he listened to me and gained my trust. He was accepting when I had bad reactions to the preventatives and did not blame me for them not working.

Diane - my sympathies to you.

A couple of neurologists I've been to are like that. They're very busy people, so they spend 10-15 minutes reviewing the written history, decide if more tests are needed and if not, make a diagnosis and formulate their treatment plan for you. You walk in, they tell you what you need to do, and you're out of the office.

Who knows, this new neurologist might even have some good treatment ideas to try. But his "bedside manner" is so bad there is no way you can deal with him on a doctor-to-adult level. He apparently wants to treat you like a passive patient. Given your long history, I would try to find a new doctor who is willing to actually talk to you unless you want to be infantalized.

BTW - I have a somewhat similar history to yours. I never had a headache in my life until I was in my early 30s. I never took any OTC drugs and had had only a few drugs prescribed to me in my entire life. Then the migraines hit and it was non-stop migraines, although they weren't particualrly painful in the beginning, just extremly neurological. Maybe 5 a week for weeks on end. When a neurologist finally decided I had migraines he suggested the high frequency might be from overuse syndrome. I laughed out loud at him because at that point I had never taken any OTC drug for it and had been given only a couple of symptomatic drugs. But he listened to what I had to say and realized rebound/overuse wasn't the problem. His treatments didn't work, but at least he listened and tried to treat based on my actual history.

I have gotten to the point with any of my docs that I call them out when they misbehave. My family doc knows that I am outspoken and only sends me to specialists who understand that I am the one who decides my treatment and that they are there to give me their best ideas and opinions. If they scoff or chuckle I bring it up. I once told an ortho that I did not trust what he was telling me and saw someone else who wasn't in a hurry to do surgery on a problem that could be fixed with physical therapy. I know it is exhausting to speak up and it is helpful to bring someone else to the appointment who is prepared to help deal with the doc.

thanks for the nice responses. yeah, i should have brought someone with me who is more outspoken than i, (i wonder who that would be, though??) but i went to a "cancellation" appointment, and had exactly a half-hour to prepare.

actually, i'm very glad i didn't spent any time preparing for this jerk. i challenged this neuro's ideas frequently during the 20-25 minute appointment, and that's when he decided i had mental problems which he was unqualified to deal with! also, he brought in another doctor (maybe a resident?) whom he failed to introduce but he was just "there" taking notes.

whatever 'mental problems' i have are most surely caused by 41 years of hideous pain. why can't doctors get that little bit of insight? i will now continue on my regimen of lots of triptans and to he** with people like this neuro who won't listen and don't care.

onward. dianne

it's a shame that the majority of neuros suck. sorry to put it that way--it just seems that's the way they are programmed, and that's the way they want to operate.

they can't stand a patient that can think or discuss problems or issues. very one sided. i think some of the best treatment for migraine is to stop going to neurologists, and just have a very, very good family practice doc.

sorry to hear dianne.

Dear Dianne: I am very sorry you had to have this experience. I can actually feel your upset. There are a lot of jerks in this world. Not just neurologists. Lots of inflated egos. I truly believe that unless you suffer physical pain yourself you cannot have empathy for one who does. Whether they be neurologists, pain specialists or whatever. They need to walk a mile in our shoes. Hope your day improves now that that is over. Make a cup of tea, grab a blanket, put on a good soap. Gail

Boy does this strike close to home. This guy sounds like the one I had at a local pain clinic. After completing his program I explained to him nothing was working, and he had the balls to tell me I wasn't doing enough to help myself. Oh and he replaced my Norco with Valium!

Like your doctor this guy was predisposed to a mind over matter way of treating Migraines and CDH. Had I known that I would not have agreed to go through his expensive program. I never went back for my eight week reevaluation.

Mind over matter my @#$%&.

For all of his education and licenses, your doctor is an arrogant dope; plain and simple.

We had such a similar thing happen with my son too. When what this neuro (a specialist in the field of migraines and somewhat well known, I believe) prescribed for my son didn't work, we definitely noticed his demeanor changed towards us. As if we were doing something wrong, or that all of a sudden my son's case was "something he never saw before" (seriously? he actually said that!) and then of course the usual - see a pscychologist remark. SOOOO frustrating. I know exactly how you must feel - ANGRY. I know I was. So sorry this happened to you.

Quoting your post---since he could tell that i really didn't think i had MOH, he was pretty sure that his IV plan would not work. because, he thinks, one must have the right mindset and 'BELIEVE' it's going to work. the ol' placebo effect. this, to me, isn't medicine, it's woo-woo stuff.---

Ok, so if I believe a treatment is going to work, it should work? That's his theory? Pretty weak.

I'm sorry you had that experience with him and I, too, look foward to Dr. Robbins' reply.

About three years ago I was sent to a chronic pain pharmD for high systolic BP and my chronic headaches. I kept telling her that my headache were really bothering me and the BP meds were not lowering enough my high systolic BP. She then sent me to a psychologist.

After talking to me for about 15 minutes, he asked why was I sent to see him. He thought that I did not require his services. I told him the pharmD was frustrated that my systolic numbers were not going low enough and that I kept telling her about my 24/7 headache pain levels. He said many times doctors get frustrated with their patients and that seemed the case with me.

Now as to my neuro, he seems indifferent to my headaches after I told him the lamotrigine side effects were very bothersome. However he did give a muscle relaxant, after I told him about my pillow headaches.

So I am sticking with my trigger point and acupuncture sessions. At least I get some relief from those sessions.

Next time, I need to see an MD about my headaches, I'll see my primary care MD, he does have passion. Under his care, he did lower my high systolic BP.

Martin

Martin

I'm sorry, Dianne. I think most of us have had a similar experience. It's soooo frustrating.

I can't wait to see what Dr. R's comments too.

In fairness to Dr. R, it may be hard for him to respond about this particular Dr.

However, it would be interesting to know what the theories are in the neuro world about mind/matter and why so often we are sent for psychological help.

Years ago when the m's were so bad I was stumbling, slurring, losing vision. The Drs were convinced I had MS. But when all the tests came back negative I was sent to....yup, a psychologist. Like Martin the psychologist saw no reason for me to be there.

I had a GP once that I just loved. My son has a genetic disorder and it was said to be "de novo" deletion. I asked her what de novo meant. She said "It's Latin for sh&* happens". Both my sons had seizures when they were 10-12 hours old. It was diagnosed as "benign familial seizure activity". I asked her what it meant. She said " it means we don't know but it probably runs in the family".

Why can't more Drs just say "I don't know?".

Exactly, say "I don't know" rather than leave us be-littled and bewildered and at a loss as to where to turn to next.

Some(many) doctors do not listen....what we as patients need is someone to listen and piece everything together.....The problem with chronic migraine is that medication overuse is almost part of the syndrome, because9of course) people try to take whatever, in order to get thru the day. Triptans can cause rebound or withdrawal headaches, but not as much as certain short-acting opioids, caffeine meds(Excedrin) and butalbital. I have never been big on diagnosing rebound, except in obvious cases, I thought the pendulum had swung much too far toward that diagnosis, and now it is swinging back; well done studies indicate that going on preventives, or Botox, even without withdrawing the daily analgesics, is still helpful and worthwhile. The problem is that we do not have good enough preventives(they only help, long-term, in about 50% of people). Larry Robbins,M.D. http://www.headachedrugs.com

Sadly many doctors are taught in medical school that 10% of women patients are hypochondriacs. This predisposes them to be patronizing and not believe you which is extremely frustrating and a huge waste of our time This is a cop out for they really don't know what the problem is. And yes I think they are worse towards women than men. In my experience about half the doctors I have seen in my life have been this way. My husband has never had this experience with a doctor. They wouldn't dare.

thanks, all who wrote and sympathized. and a special thanks to dr. robbins for his input. i feel lots better today. it really did help me to get rid of some of the anger i felt, by writing out the short version. (there's more; i won't bore you with that.) the main issue was this neuro's ultra-arrogant, yet condescending manner.

my new primary doc doesn't know much about head pain, but at least he is willing to prescribe the meds i need. i'm mainly using him for yearly checkups and blood tests.

i'm pretty proud of the fact that, other than my head and sinuses, everything else is working very well indeed! i eat only real, natural food, and am fit enough to fast-walk 3 1/2 miles/day, (on the days my head will allow it) plus work part time. for my age, i think i'm doing very well, and for this i am extremely grateful. dianne

p.s. i want to add my gratitude for THIS FORUM, and for DR. R., and the great sounding-board we have here. may it always be so. and no, the picture is not me.....it's my 40-year old daughter. i'm 30 years older than she. antique, in other words. but still kickin'!

Diane,

I get it. That was sort of why I fired my neuro. I don't need to be talked down to and I need to live. He didn't get that fact.

I've talked to other patients of his and they have said that he does tend to be a jerk. Well fine and dandy for them but I refuse to put up with it. I have enough problems and wasn't responding to his style of prescribing meds (mix 2 and see what happens) plus limiting to 8 triptans a month and no pain meds. That's fine if you have 2 a week and they are mild - not when you have it every day. Then telling me that if I requested pain meds that he couldn't work with me - okay see ya.

I'm thinking seeing a different one wouldn't be a bad idea but I'm not sure I'm up to battling with insurance as the last one was the only one covered that specialized in it. But that's my dilemma. I have a wonderful GP who is willing to allow me a quality of life and saw that that neuro was a disaster.

I have no words of wisdom other than what are you hoping to get out of a neuro? Is it worth the hassle to you?

Just my thoughts.

Dr. Robbins, you know what we have gone through. Anna has been in pain management for seven years. More medicating than most people on this forum, I am quite sure. This has been supported by various doctors--neurologists and pain doctors/anesthesiologists. It provides her some quality of life, if weather conditions are favorable. However overall her pain levels are not acceptable, and we continue to do procedures and surgeries. Trying to find some other way to control her intractable head pain, other than using opioids.

Her prescribing doctor went to Mayo Clinic last week for seminars. We saw him on Monday. He said he attended seminars on chronic pain and headache. He talked to some neuros about Anna's case. He told us the current research shows that opioids for chronic pain is not the right way to go. And particularly with HA pain. You know all the reasons why. I can imagine how many doctors were at Mayo last week, to hear this.

When no one knows the cause of Anna's head pain, but when it is far more complex than migraine disease, it seems too simplistic to think going off opioids is going to make her better long term. But these Mayo doctors he talked to think that is the direction that should be taken.

I know we are between a rock and a hard place.

Cheryl

He told us the current research shows that opioids for chronic pain is not the right way to go. And particularly with HA pain. You know all the reasons why. I can imagine how many doctors were at Mayo last week, to hear this.

Ugh. Whereas I'm sure there is plenty of research to back this up, where does that leave those of us who have been trying preventatives for years? I was in on the studies for Imitrex back in the day, I've done natural, botox, if there's a off brand use for a drug that might include migraine, I've tried it. With sometimes disasterous results.

I can understand not using opioids as the first line of defense. Believe me, daily opioid use is NOT the route I wanted to take. As you know, it has its own drawbacks...medical ones, societal ones... But after fighting this for 20 years the pain management regime I went on has given me my life back.

Its just hard when we're all lumped together. I yearn for the days of Star Trek when they can just wave a wand over us and have a diagnosis.

[quote="paradox" I yearn for the days of Star Trek when they can just wave a wand over us and have a diagnosis.[/quote]

Wave a wand and diagnose... I want them to wave a wand and fix. No more horrid medicines and actual relief would be nice.

Oh gosh, sounds like you've stepped into neuro-God's office and he generously decided to part with some of his (brows arched) "wisdom" with you...
I am so sorry you had to deal with this.

I guess I don't need to echo others in saying it's better to find some new, REAL professional,
who hopefully will be able to get to the root of what's going on with you, Dianne.

Risa

to those who asked why i'm putting myself in the precarious position of consulting yet another neuro.........it is because i left out the part of the story about finding this jerk/er guy on a website for a rather unorthodox, but drug-related treatment.

when i cornered him and asked point-blank if he would prescribe this for me, he said "sure". but that was before he decided i was a nut-case and he wouldn't touch me with a 10-foot pole.

i'm DONE with neuros. they are god's most know-it-all people. the end.

if anyone wants to pm me about the treatment, you're welcome to do so. i've been reading about this for years and years, but perhaps shouldn't post it on here. (no, it's NOT illegal).

dr. know-it-all said it had no science behind it......but he had prescribed it for other people. so the question remains: WHY WOULD YOU DO IT FOR ANYONE, THEN? to placate the gullible patients, who only respond to the placebo effect, maybe? dianne

Diane,

The only reason I asked was that I know you have something that sort of works for you (and that your regular doctor was really good about things). I know we are always in pursuit of something that will take them away though...

After filling us in on some of the other details - I wouldn't see him ever again. Yikes! So sorry you had to deal with that.

Becky