So for th last 35 years, I have seen th same doctor. Yes, I have tried other; pain specialiasts, neuros,etc/ But my Gp was always old faithful. He and I worked together to find the combos of meds that worked and he never questioned me if I asked for something esp since he knew I wasn't asking for narcotics. 3 weeks ago, the beast came baack after almost a 2 year abscence and to my dismay, I found out that my soc retired. So now I am fighting with his replacement a t0 why 2 refills is not enough imitrex and she doesn't see how o2 could poossibly help me. I told her to read my file, which she said she had done. READ CLOSER! Just wanted to vent. Thanks.

Patrick

Heartbreaking and so damned frustrating to lose the "understanding willing to work with ya" doc. :'( I was a Kaiser patient up until I retired, and was fortunate enough to have neuro and a GP who were up to speed on CH, and more importantly, open to learning. Don't forget you're a consumer, they are providing a service to you. If there service sucks, take your business elsewhere. Hoping you have better luck next go-round.

Joe

Fire her yesterday and get a real Dr.  I abhor Dr's who think MD means God.  Fortunately, they are not the norm, but unfortunately, it seems to often we clusterheads find them.  If she does not know O2 is indicated for CH and she has read your chart and your history she should also have read up on medical literature that plainly shows high flow oxygen is the preferred abortive of choice.  I know you can't make malpractice stick on something like that, but in my humble, but correct, opinion it is definitely borderline!

Jerry

I will be meeting with her again thisweek. Hopefuly, this time I can make mor headway. This timeI will come loaded with info to help her understand. I eeally thought she would be helpful as she is the one who hd full access to my files as she is the one who replaced my old doc. if this doesn't work, guess we'll be shopping for nw doc.

Fingers crossed for ya Funk.

Joe

I recently got a new neuro, headache specialist. She wanted to do a sleep study, I said OK. We are supposed to discuss the results at my next appt.

I requested a copy of the study so I could read it before I got there to discuss it. They are not wanting to give it me. Anyone else have problems with this?

My wife had called them after my first appt and asked them how many CH patients the doc had and they would not tell her, just that she was a specialist and she treated all types of headaches.

Am I being harsh or are both of these big red flags?

Chris

Yes, and yes.

Your results are YOUR results.  They belong to you, not the Dr.  You are the patient, and you are the one paying for them.  They belong to you.  That does not mean they don't keep a copy, but it is important for you to keep your own records.  What happens if your Dr decides to retire tomorrow?  What if they have a disaster and don't have access to your records?  This is not far-fetched.  It does happen, and has happened to some of us.  My family has needed to provide records and information on a number of instances because the Dr was not able to access them for one reason or another.  Going between a GP and a Neuro or another specialist is another place records disappear.  If you have your copies with you it is much easier to provide them at the time than to have the recreated or to undergo the testing again.  (Insurance doesn't like to pay for that)

If a Dr's office is not willing to tell you how much experience a Dr has in treating CH it is a very big red flag to me.  They don't have to say who, or give any information about patients, but they should be able to give an idea of the Dr's experience.  That is like going to a lawyer for defense in a capital crime case and finding out after the fact that he is a world renowned divorce lawyer.  That makes you feel really comfortable when they strap you onto the gurney.

JMHO

jc

Nuther thing you might try (and I have) CALL your old doc and ask him to call the new one and INFORM her of your condition.

I had such a good repore with my old doc who retired that I don't have any qualms about calling him and asking for help. And he just laughs and tells me he'll take care of it -- and makes some crack about these "new" docs just don't understand everything ...

But it sounds like you need a better deal with your neuro.. That's too long to get an appt. When you need him/her YOU NEED THEM NOW! When I call, I want something done NOW - not a few months from now and they darn well know it and get 'r done. (I've been with them for over 20 years).

And if they know what theyre doing they WILL tell you how many patients they treat with CH. heck, I know MOST of my neuro's CH patients cause I've referred most of them to him (he takes my referrals). He doesn't give me confidential info on them, but if I ask how they're doing he will tell me. And he has my permission to give out my phone number to new patients with CH and does so if he thinks they need support.

But like Joe said - remember you are a CONSUMER and can demand things that all consumers do. Docs are PRACTICING and they ain't perfect - regardless of what they think of themselves.

Good luck.. and let us know how you're doing..  :-*

CDog wrote on Mar 11^th, 2013 at 6:22pm:

I requested a copy of the study so I could read it before I got there to discuss it. They are not wanting to give it me. Anyone else have problems with this?

No. I don't know how it is everywhere, but from where I am from, any medical information belongs to the patient. If you send in a written request, they HAVE TO give you all the info in your file. Have you tried sending a written request? Maybe they would change their tune if it wasn't a verbal request.

Where I live doctors have to satisfy any request like this. They may bitch a lot but it's the way it is...finally.

Charlie

Jess-after the Neuro office screwed around for a week deciding what to tell me, there wasn't enough time to do that. My GP has put in a request to get it, but still won't get it prior to my appt.

So went back to the new doc again this pat Thursday. This time with a little more success. She was much more understanding and willing to listen. We switched the BP med from dyaside to lysinopril(spelling?) then we started going through the motions exactly the way I had with my old doc through the years. One of the thing that left her dumbfounded was that I refused pain meds(didn't understand how someone goin thru so much pain didn't need anything). At which point I explaine that narcotics made my CH worse. Anyway, a step in the right direction. Oh yeah, we started a prednisone taper with which I've had success in the past with breaking the cycle long enough to get the other meds to adequate levels. Have not had a HA since 10pm Thursday. I know it may just be the steroids talikn but the 4 days with restful sleep have been awesome.

Patrick

Glad to hear it, Patrick.  I may have been a bit quick on the trigger with my advice, but I'm done putting up with a bunch of BS from someone I employ to help me deal with an issue.  I've been through that several times now, and even went without a Neuro for a number of years because I couldn't find one who knew anything that didn't think MD meant God, and that would listen to me and work with me instead of prescribing meds I had an allergy to.  I'm really glad you are starting to get things on the right basis with her.

Jerry

So, the new doc actually turned out to b okay. that is after I made two trips to te ER, missed 3 days of work and called her office about 500 different times :D. She has now realized that the Beast doesn't play and neither do I while fighting the beast. She seems to be letting me call the shots and all is well for now.