Hi All-
After six months of waiting, I finally had my much anticipated appointment with a neurologist who I searched for by reading bios.  She is the Head od the Department at University of Kentucky.  I had prepared myself for the usual disappointment in knowledge, and my daughter, who worked in clinical pharmacy there, warned me of the neurologist personality in general.

Much to my surprise, she was as informed as a clusterhead, but with the added benefit of being a medical doctor!  She also had a great personality and was compassionate.  It sounds too good to be true and at the end of the appointment, I found out that it was...she is leaving UK for another job in another state in July.

I am still very thankful and will get to see her again for a follow up before she leaves.  I have an MRI next week and a a cardiac check-up prior to that appointment.  She is going to write a long letter of recommendations to my internist.  Also, I can see her physician's assistant here, who she has trained for 4 years, or go to Cincinnati to a neurologist she says is wonderful with clusters as well.

I got a script for O2 written just like you clusterhead pros here like it, change in blood pressure medication where Verapamil will be my primary Rx, and after a scheduled cardiac check up due to family history, she will advise on the Imitrex injection and Zomig Nasal.  By the way, she knew exactly what I was talking about when I told her about the Imitrex Tip, though she wasn't familiar with this site.  There was so much discussed, but it is too much to write here. 

In my 25 years of doctor after doctor (even Neurologists), I have never been in the presence a doctor so knowledgeable and understanding about clusters.  I was in awe!  We talked for an hour after a physical exam.  She even had students come in to "see" me and listen.  They were excited because they said they had read about it but had not seen anyone describe it as well as I did.  They loved my charts and cluster history.  They also loved asking questions about my family members affected.

I go back after testing for a follow up and questions or any changes to be made.  Right now, I feel as if I have made progress even though she is leaving this summer.  She will get the baseline of tests, follow up with me, instruct my internist of medications/treatments, got an O2 script, and gave me the info on her PA and another doctor if necessary.  That is the best I have ever gotten, so it is definitely a step forward. 

I did want to mention that we discussed the lingering shadows between cycles.  She called it by a name, which I have forgotten, and said it was similar to people with MS that have problems, then remission time and time again over a long period of time...and that eventually, damage is done over time that can not be reversed and you just don't get back to totally normal.  As long as my MRI comes out alright, she didn't act like it was a concern of danger, just a nuisance.  The more headaches, the more the nuisance.  Now I wish I hadn't suffered so many years with no meds or treatment.  I might have saved myself from some damage. 

I will keep you all posted.  I'll probably remember much more as time goes by and I see topics.

Thanks for being here!

Joni

Joni!...that there is a yeehaw moment for ALL of us here. I am so happy for you...it made my day.

To find a Doc that gets it...and report it so wonderfully...thank you!

Best,

Jon

To find a doc that gets it and then to lose her is a heartbreak.  Went through that myself several years back and after a fruitless search gave up and just us my GP and this board as my specialist. :D  It is heartening though to finally find someone who knows, cares, and understands as fully as a non-sufferer can.  you might ask her next time if she would mind if you put her name down as a referral on OUCH.  We always need to know where good Drs are as we get asked frequently by newbies and by people who move to a new area.

Jerry

I was thrilled as well with my new neuro when I went into his office and saw about 20 different hand framed sketches of his patients showing what the beast looks like from their perspective.  He wants me to draw a pic as well for my next appointment.  He also encouraged the use of rc seeds which was flattering.  Gave me all the scripts I need especially for O2.  Got the MRI and EEG as well. 

Joni, I am glad you found a good one and hopefully she can set you up with colleague that is following her path of knowledge.  Keep us posted on that.

Cheers,
Chad 

YEAH! A doctor that understands CH! That is great! What a wonderful feeling you must have.  Now maybe you can get on the right track and start getting some relief!
A true blessing! Take care!