Since I have found this website and all the great info you all have provided, I have been taking notes and presenting to my husbands nuero.  Well this is obviously making him angry.  We have Kaiser insurance and can email to Johnny's doc.  Well the other day he responded to me in a snooty sort of way about the emailing of medical student questions should stop and we should make an office visit to discuss my concerns.  So I tried only to find there was nothing available until after the first of Aug.  We went to the members services office to lodge our complaint and were told to go right to the nuero's office.  When we arrived we waited almost an hour and then he never spoke to us directly, we had to middleman with an RN to get our answers, nothing was really resolved with Johnny's treatment, as our nuero is unwilling to hear some of the things I have found here.  His statement was there is much info on the web that is unsubstantiated, and he is doing what he thinks will work for Johnny. The main treatment I was questioning was the pred taper.  He never prescibed a taper for Johnny.  Only a 5 day supply of pred and an immediate stop.  While Johnny was on the pred his headaches went into remission, although he was goofy as all hell :D;  as soon as he stopped the pred, the beast came back.  Any suggestions as to how I can convince the nuero a pred taper is what he should have ordered.

An abrupt stop after 5 days on prednisone is not too bad. If it was any longer, though, I'd have questioned it.

Here are your next words for Dr. Neuro:

"You're fired."

Find somebody new.

Brew wrote on Jul 15^th, 2012 at 12:42pm:

An abrupt stop after 5 days on prednisone is not too bad. If it was any longer, though, I'd have questioned it. Here are your next words for Dr. Neuro: "You're fired." Find somebody new.

Amen, I fired my GP when he did not have time to research Frova for me after I told him about the medicine.

We have had experience with Kaiser and CH. I think Joe was lucky in that his GP had a family member with CH so he remained interested in the course of treatment, and kept in touch with the neuro.

Kaiser gets a bad rap sometimes - but I found in the 25 years I was covered there that you have to be your own advocate. Calling member services was smart. Following their advice was smart too - but since it didn't yield the desired results (no appt and no interaction with the neuro) I would call again if it were me. I would tell them that you want a consult with another neuro (surely there is more than one) and one that has more CH patients.

THere is too much published info now for a good neuro to overlook treatments like O2 for aborting and preventatives.

While the neuros may not respet info coming from a ch-sufferer forum, they can't overlook their own medical journals, such as the materials that Bob Johnson puts up here.

Good luck.

(Arrogance just pisses me off, which seems like a good description of your neuro).

johnnysrock wrote on Jul 15^th, 2012 at 10:40am:

nothing was really resolved with Johnny's treatment The main treatment...pred taper a 5 day supply on the pred his headaches went into remission as soon as he stopped the pred, the beast came back

Quote:

make an office visit to discuss my concerns

I'd believe they are very evident.  The main concern is he is back to square one after five days, most likely would be and now you need answers from him.



Quote:

he is doing what he thinks will work for Johnny

For five days?  Now what?


Right here is your concern and all you should need to say for this doc to have an immediate appointment.


Quote:

as soon as he stopped the pred, the beast came back

Clusters can come back heartily after pred. 

Find out if he has an answer          or change.

My Neurologist has the same attitude.  My PCP, however, actually told me he very much appreciated my active involvement in my medicine.  He commented "I wish all my patients were as well-prepared as you are."

If you find the right doctor, he/she will be excited about new or different ways of approaching a problem.  At the very least, they should be open to ideas they may not be familiar with.  Medicine, after all, is a moving target.