Hi All!  Hope everyone is doing well.  Just wanted to share the latest news from my follow-up Neuro appt on the 10th.

The good news is that my Neuro is pleased with how things are going.  She took a look at my spreadsheet and all my notes about each CH.  She asked me specifically if I was OK with how my headaches were at present (1-2 per month and a KIP 1-3).  I told her that life wasn't perfect, but I felt I had a good handle on things at present.  I knew exactly what to do and when to do it so that I could still function and go to work.  I did, however, point out the one anomaly of my experience with tea and the massive CH that followed.  She said "Good Catch!".  Also, she said that if she were in my shoes she wouldn't have anymore tea either!  LOL!  

We discussed the D3 regimen and she has ordered a comprehensive lab workup.  She took a look at my previous lab results and noticed that my D3 level was 47.  She wants to check my levels and see where they stand today after being on the D3 regimen.  If things look good, we may adjust the amount I'm taking to the full level and see where that takes me.  Blood pressure was just fine so we will keep me on the verapamil and O2 (which also has been working great!)

She has ordered my annual MRI for my MS so we can check the brain for any changes.  Fingers crossed--no new lesions!  I haven't had any major issues except fatigue and a few aches and pains.  At least now I have a reason to be so doggone tired all the time!

The best comment she made during my visit was that she had done a lot of reading on our forum and other forums as well.  She was so pleased to find that there were so many folks out there helping each other through this thing called CH.  She has even shared my experience with others and has passed along some recommendations.  She mentioned that I had actually been teaching her something about CH.  I immediately told her that I was only "gleaning".  You folks were here WAY before me.  All the credit goes to you guys! 

So the only fly in the ointment is that my employer changed insurance companies.  So here we go again.  Having to find another DME provider and get that set up for my O2.  I have a tank at home with an Rx on file with my old provider so I'm good through the end of January.  (What's amazing is that in my search for a new DME provider, I have spoke to two people at two separate agencies that actually knew what CH is.  Holy Cow!)  I'm just getting a little frustrated that I can't get a quicker response from my Neuro's office.  (I've found that people just don't work on MY schedule.  I wanted all this taken care of YESTERDAY!  )  Oh well, patience is a virtue, right?

So that just about sums it up.  Not a bad visit at all.  I'm looking forward to getting my test results back soon, and I'll be sure to share.  My best advice to all of you new members or supporters, if you are not happy with your Dr/Neuro/PCP keep searching until you find one that will really listen.  It can make all the difference.

Wishing all PFDAN,
Payg

It looks like you have found a wonderful neuro who is knowledgeable about what she knows / doesn't know and is willing to learn from many sources. If only everyone had access to someone like her.

Whilst any CHs isn't a perfect outcome, getting them down to the frequency and intensity that you have is a great result. Long may it continue, even at the expense of enjoying a cup of tea.

Wishing your good results continue. It is an amazing feeling to be in control of your CH and not for your CH to control you.