Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> How to find an sympathetic MD?
        
(Message started by: Incoming on Mar 31^st, 2004, 5:31pm)

Title: How to find an sympathetic MD?
Post by Incoming on Mar 31^st, 2004, 5:31pm

My MD is still referring me to a neurologist when CH episodes occur. Even though he knows I get CH's. He also knows what the neurologist has prescribed in the past. I've been thru this at least 5 times over the past 15 years with my MD. He never wants to get involved, and doesn't seem to care that weeks will go by before I have access to perscriptions. It takes at least a week to see the neurologist by which time I'm a zombie. Is my MD's attitude common? Neither the MD or neurologist has been effective anyway. I am learning more on this website and receiving more benefit here than I ever have from my doctors! Anybody know a good, sympathetic MD - General Practice, in the Bay Area?

Title: Re: How to find an sympathetic MD?
Post by Superpain on Mar 31^st, 2004, 5:50pm

http://www.clusterheadaches.org/doctors.htm

there's a start...

MD's are NOT the people to see about clusters.
You need to find a neurologist, obviously not the one you have now, that is experienced and trained specifically in the cluster field of practice. Most good cluster doc's practices' revolve around headache management.

Make your own appt with them and when you call make sure and ask if they are specialized and/or have plenty of experience with clusters.

Also, the best thing you can do as a patient is be informed. Read up on this site and the OUCH site. Print all the medications and medical info, and make a folder to take in with you, so that you are prepared to be knowledgeable about what they may prescribe.

I finally saw a good headache doc the otherday for the first time in 18 yrs of suffering.
He gave me imitrex injections, prescriptions for an O2 setup, put me on verapamil and the steroid prednisone... I started the meds yesterday and I'm going on 36 hrs of no headache for the first time in a LONG time.

Try melatonin at night too. It helps!
And if you don't have Oxygen, get your ass to a welding supply shop, get at least an "E" tank full of oxygen, a regulator and a hose. Most people around here say you need the nonrebreathing mask, but I've had great success just hitting off the hose. It will kill a headache in a matter of minutes...
What meds are you on now?

Title: Re: How to find an sympathetic MD?
Post by Superpain on Mar 31^st, 2004, 5:56pm

I would say since Dr Neil Raskin is on that list 4 times, and he's in sanfran, he is your man!

Title: Re: How to find an sympathetic MD?
Post by wsnyder on Mar 31^st, 2004, 6:17pm

The last time I saw my neuro I took along printouts of what appeared patient to patient here on the boards about meds, O2, etc., as well as info from doctors from here and OUCH. My neuro was more interested in the printouts from the boards than the doctor stuff. She responded to the emotiion and fears, and "stuff." She finally listened anad upped my verap and O2 pressure (requiring a new regulator) and it really has made a pleasant difference. I suppose some doctors would find the board stuff as a hook but I think it is a good idea to take everything along that you could possibly use to get what you need and then pull it out of your hat when you have figured out the best approach.

Most of these doctors treat CH patients sympathetically but haven't experienced a CH themselves and don't have enough information about the value of our statements expressing the true agony we experience. It may help for them to see it coming from others as well as you. They most often don't have a clue just how bad the pain really is and cannot connect with the immediate need for relief.

Bill

Title: Re: How to find an sympathetic MD?
Post by FZfan on Mar 31^st, 2004, 7:02pm

I think it's important for your MD to be involved, even if you are referred to a neuro. Your MD should be the single point of contact for everything involving your health, even if he doesn't treat everything.

If your MD won't take an occasional phone call from you to inform him of what's going on, I would seek another MD. I want my MD to be interested in clusters or anything wrong with his patients that he doesn't have expertise in.

My doc is about the same age as me and we get along like friends. He's as interested in treating these things as I am. That's how I think it should be.

There's lots of doctors out there. Don't hesitate to find another one if you don't feel right about the one you're with.

I'm reminded of a line by maybe George Carlin, or some comedian that goes something like this:

Right now, in America, someone is seeing the worst doctor in the country. ;;D

Title: Re: How to find an sympathetic MD?
Post by wsnyder on Mar 31^st, 2004, 7:08pm

As an aside (and I apologize for it) I like Carlin's line about self help which goes something like:

"If it is truly self help you need then you shouldn't need to buy a book for it to do it yourself. And ... since you can do it yourself, you really don't need any help."

Bill