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Cluster Headache Help and Support >> Cluster Headache Specific >> Why does my Primary care Doc not listen?
(Message started by: DavidEH on Aug 18th, 2006, 12:02pm)

Title: Why does my Primary care Doc not listen?
Post by DavidEH on Aug 18th, 2006, 12:02pm
Well, I went to see my Primary Care Doctor today, for a referral, and also for something (anything for the pain)..

He gave me a prescription for relpax, until then... But honestly, I feel as if he chooses not to really listen to me, when I try to explain the differences between a migraine and a cluster... I know he thinks in his narrow mind, that they are very similar.

Hopefully these do something until I get to see the Neuro (mind you the same neuro I saw 2 years ago, thus the referral was basically pointless). I even asked if he knew of a "headache specialist" for which he countered, "They are all headache specialist."... Whatever Doc...

I just popped the sample now, cuz I'm having shadows...

I guess it just proves that you have to bring some "literature" with you, for them to understand...

If I was a Doctor, and was told that my patient had previous relief from a certain product for his diagnosed illness, I would listen and not just give out a prescription of the samples I have in my office....

It also boggled my mine, that for some reason, he didn't quite grasp, how quick these headaches occur, thus the pointlessness of a pill.

"Take them when the headache hits, " he says.

"Ahhh," I say...








Title: Re: Why does my Primary care Doc not listen?
Post by paulc on Aug 18th, 2006, 12:20pm
Can you change your primary care doc under your health insurance plan?  That is what I would do-docs that don't listen to their patients and prescribe medications based upon ignorance cause a lot of hurt.  If he really doesn't believe that there is a difference between CH and migranes, I'd go elsewhere.  He sounds like a pompous know-it-all jerk!

Title: Re: Why does my Primary care Doc not listen?
Post by Bond007 on Aug 18th, 2006, 1:01pm
I'd have to agree with Paul.  Check out your health plan and see what allowances there are for changing your PCP.  If my PCP pulled that sh!t on me, I'd be asking for medical files on my way out the friggin' door.  What a jackass!


Oh, sorry, bro.  Just channeling your pain for a brief sec.  I'm better now.  Hope you are too!   ;)

Title: Re: Why does my Primary care Doc not listen?
Post by DavidEH on Aug 18th, 2006, 1:15pm
It's prolly not a bad idea, to switch...

I have a very good health care plan, so it prolly wouldnt be a huge problem...

Also set a long over due physical with him in 3 months, but geeze, I truly wonder how that will go. I feel as if, the role of the primary doctor is really just a middle man. If he notices something he remembers from medical school, he just sends you to another doctor for help...

I used to have the best primary care doc a few years ago. Then he "retired" to work for an insurance company (more money, less work I guess)... He would honestly listen, instead of rushing...

Enough venting, hopefully these relpax will calm down the intensity or something, I'm not going to wait for the headache to happen, I'll pop two a day, and just hope...

This may be bad seeing that with the one refill, I have basically 12 pills (2 a day max) and Neuro appointment isnt for about 2 weeks. They wouldn't even prescribe anything there, due to my two years since my last visit...

Here's hoping for some luck....


Title: Re: Why does my Primary care Doc not listen?
Post by Katherinecm on Aug 18th, 2006, 1:25pm
I agree. Go to someone else, explain in the first appointment that the reason you needed a new doctor is because the last one was completely ignorant jerk about the seriousness of cluster headaches and he was unwilling to learn about it.

Under the american system of health care, you have a right to have your pain controlled. In this litigious society, all doctors should know that. I might, out of pure annoyance, let the old doctor know that.

Because CH is SO rare it is VERY important to educate yourself on different treatments. Even if visiting a "headache specialist" you may find that they confuse CH and migraine. Because this is so rare, IMHO, it is more important to find a doctor that is compassionate, willing to listen to you, and willing to RESEARCH the ideas you bring him/her than it is to find someone who thinks they know everything about CH.

If your headaches are so quick that pills don't work, you might ask for imitrex injections. They don't work great for me as they seem to cause rebounds, but many people here LOVE them.

Title: Re: Why does my Primary care Doc not listen?
Post by Bob_Johnson on Aug 18th, 2006, 4:01pm
One of the better headache docs in the U.S. commented that about 40%+ of docs receive little/no training in headache and have little practical experience with these complex disorders.

Ignorance is not a sufficient reason to change unless you have sure access to an experienced doc--but so many people live in small towns/rural areas where there is little/no choice.

Key issue for me: do I have a doc who is willing to admit ignorance BUT is willing to learn. We can provide excellent material for a doc who is open to receiving--but we cannot help the closed/arrogant souls.

I've repeatedly written about my former primary care who was open/receiving, therefore helpful to me. This man was so humane that, when I recently moved out of state he wrote a letter thanking me for educating him and expressing sorrow at my leaving.

We should all be so luckly! But in the absence of having such a soul on our side, we need to be careful about making a change, taking the time to filter thru the many docs who may be in our area.
-------
1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/   On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.





Title: Re: Why does my Primary care Doc not listen?
Post by Charlotte on Aug 18th, 2006, 6:38pm
Dave, please change docs.  As a criteria, when you interview dr offices on the phone, look for one who has his or her staff ask you what has not worked in the past.  That's a sign they know some things don't work, and that they listen.

These people are making a lot of money and they are providing a service.  If your car was still broken, you'd get another mechanic.

And when you go to the new doc, let us know and we will pray for you and vibe you  and think aobut you, and maybe the new doc will listen.

Charlotte

Title: Re: Why does my Primary care Doc not listen?
Post by sandie99 on Aug 19th, 2006, 4:05am
David,

I'm sorry that you had one of those docs who do not listen... Unfourtainly there are plenty of them.

I  have met many docs and several neuros during my ch time. I've been treated in both Finland and UK and I've met docs who don't listen in both... ::) But also great, caring ones, you'll never know.

How difficult process it is to change a doc? Back here it's pretty simple; you just book a time to see another. We don't have "own doctor/family doctor"- system back in here. But also, not many neuros back here know their ch...

So knowledge is power. There more you know yourself, the easier it becomes to know if the doc knows less than you! (It's entirely possible!) It's a good idea to take material with you. I'm going to do the very same the next time I'm going to see a doc (if I go that is...)

And decide in beforehand what kind of meds/treatment you want next. After all, it's not the doc who will pop the pills/get oxygen/injections/whatever, but you. And if you don't want to take whatever the doc decides that you should, you CAN have your say!

I hope you a better luck the next time you'll see a doc. One of the neuros I met was a complete idiot the first time I met him. But, on the second time, he actually listened to me and my suggestions. Miracles do happen! ;)

Best wishes & good luck!

Sanna

Title: Re: Why does my Primary care Doc not listen?
Post by catherinelane on Aug 19th, 2006, 6:50am
i compleatley simpathise with you i took loads of papers into my gp when i discovered it was ch i had i practacly did the docs job for her, after being given paracetamol, imagran tablets, iboprofen, the list of completley useless meds goes on and on for about 2 years until i met my neuro who specialises in headache disorders........ its all about finding that right person to help you unfortunatley that as a lot of people on here can tell you is a long hard road.

Title: Re: Why does my Primary care Doc not listen?
Post by kcopelin on Aug 19th, 2006, 8:43am
So, many doctors do not like to admit that they don't know anything about CH.  I go in armed to the teeth with info-in fact I have a binder with all the research I've downloaded and the medication list with annotations on what I have tried in the past and its effectiveness.  I also hand them the Kip scale and then tell them where I am on that.  So far, pretty good luck with this system-only one neuro was so pig-headed (wonder if THAT is a neurological disorder) that he wouldn't even look.  He prescribed naprosyn and accupuncture. ::)  I refused to see him again.
Also, I have a typed history with an up to date headache chart and FAQ-I hand that to them right away and explain that if I get hit while in their office they can just read while I suck O2 and rock.  This generally helps.  I also take in my O2, regulator (that I had to purchase myself on e-bay, and clustermasx.  
Sometimes extreme pain calls for extreme measures-have been known to ask that they give me nitro to induce a CH, just for their education.  Often get the "deer in the headlights" look at that suggestion.
Just a few strategies that I have learned.
Don't give up-even if you don't find someone who knows about CHs there are docs out there who are compassionate and teachable.
Wishing you PFDAN
kathy

Title: Re: Why does my Primary care Doc not listen?
Post by Charlotte on Aug 19th, 2006, 9:51am
I was also armed with typed info, but handed it to the neuro as it came up and put it away after he read it.  I'm very anal, and I was prepared.  I think the problem I had was thinking while getting hit in the office, but it was handy as a visual aid.  When they happen every 2 hours, the odds are good a visual aid will be available.

Kathy, you amaze me.  

Charlotte

Title: Re: Why does my Primary care Doc not listen?
Post by BarbaraD on Aug 19th, 2006, 9:57am
My PCP LISTENS. Had a hit in his office one day so he got to see it first hand and since then the whole office KNOWS about Clusters. My neuro has migraines and says he's GLAD he has them and not what I have.

Change docs until you find one who will WORK with you. Remember they are just PRACTICING and don't know everything.

Hugs BD

PS - invest in some RED BULL and down a can or two of that at the first sign of CH. Also if you can get some O2 that helps also.


Title: Re: Why does my Primary care Doc not listen?
Post by georgej on Aug 19th, 2006, 10:11am

on 08/19/06 at 08:43:31, kcopelin wrote:
 
Sometimes extreme pain calls for extreme measures-have been known to ask that they give me nitro to induce a CH, just for their education.  Often get the "deer in the headlights" look at that suggestion.


Good heavens, Kathy...

A person's gotta do what a person's gotta do, but you have some SERIOUS grit and determination.

Speechless with admiration,

George

Title: Re: Why does my Primary care Doc not listen?
Post by DavidEH on Aug 19th, 2006, 2:27pm
The funniest part is, 2 years ago I was hit in his waiting room, and basically he did nothing then...

I was very calm yesterday, but honestly that prolly hurt..

I can't wait to call later today, in an attempt to get some new meds until my neuru appointment...

It clearly states in the first sentence of the relpex prescription info. PLEASE DO NOT TAKE FOR OTHER HEADACHES (I.E.CLUSTER HEADACHES)... sorry for shouting... it even has the cluster headache part in the parenthesis...

I mean are these people retarded or what? Not only did he not listen, but the guy doesn't even know what these pills are for... If thats not malpractice I don't know what is.... I am very pissed, and these pills, although kinda working, are having some nasty side effects.

I'm currently battling a kip 3-4... which is a good thing, seeing that I've battled 9-10s before.. I guess they kinda work, but geez....

Should I call, and complain? Seeing that I am diagnosed with clusters, there should be no problem getting the right meds....

Title: Re: Why does my Primary care Doc not listen?
Post by Bond007 on Aug 19th, 2006, 2:41pm
I would at least call and let them know that the meds he gave you aren't helping and that you'd like to try Imitrex Self-Injectors.  And, ask them to call the script in to your pharmacy.  See if he'll at least do that for you.

I have Relpax in my medicine cabinet, too -- for my migraines.  They can't even begin to touch a CH.  Although, I have taken a Frova before for a CH attack.  It didn't help much for the attack I was having at the moment, but since Frova is a looooooong acting vaso-constrictor, I didn't have any CH's for the next 24 hours!  Then again, my tongue did go a tad bit numb which was odd........ ::)

Title: Re: Why does my Primary care Doc not listen?
Post by chewy on Aug 19th, 2006, 10:00pm

Quote:
Why does my Primary care Doc not listen?


Why do you retain the Doc?

If you have a good plan then switch.



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