I finally saw my new neurologist today, and it went really well.  He knew right away that my headaches were cluster headaches, and he said I was the 1st female patient he has seen in 6 years with these type of headaches.  I thought that was pretty interesting.  I knew 100% after doing research and reading on this site that my headaches were cluster headaches, but I feel like a big weight has been lifted off my shoulders to finally have a physician know what they are doing after 15 years and put the correct diagnosis to these monstrous headaches.  He also commented on how it was a shame it took that long.  I thanked him about a million times.  He already has a treatment plan lined up for me, and in case that fails he has a backup planned. 

Anyway, I thought I would share my experience with my new neurologist with you because I wasn't sure how it would go, but I am extremely relieved that he knew about cluster headaches, and I am also happy to say that I no longer have the diagnosis of migraines (which I have always doubted because of how different my headaches are).

Care to share what those treatment plans are?

Sure, I am currently on verapamil ER at a dose of 120 mg a day.  He said to stay on that since it is working so well with no breakthrough headaches (just shadows), but if I am finding that I am having a lot of unexpected breakthrough headaches to start taking 2 a day (240 mg a day).  If that is ineffective, he is going to put me on lithium.  He also called me in a prescription for something for breakthrough headaches, something he said was effective for cluster headache patients.  I am unsure of the name right now.  I will let you know when I pick it up.  I believe it's called indomethacin, but he called it in directly from the office, and I just got home and didn't pick it up yet.

I didn't bring up the O2 thing this time.  I let him come to the diagnosis and acted like I've never heard of cluster headaches before because if he seemed no good, I was going to go to a specialist on the list on this site.  I do, however, plan to bring it up at my next appointment in 3 months.  I plan to be in remission within the middle of next month anyways for a year (unless all goes off course).  So, I should be good until my visit with him.

He told me to research the internet.  So, I will let him know I did and bring it up that way. 

Two things:

1. The immediate release form of verapamil has been shown to be far more effective for CH patients than the slow release. I'd ask him to try that before adding lithium to the mix.

2. Too bad you're going to wait three months for O2. I'd be on the phone to him this afternoon. Tell him you were so excited by your visit with him that you've done your research.

Good idea about the O2.  I am still just happy to finally have answers my brain is not thinking fast enough, lol.  I'll have to do that or possibly print off the paper from this site and drop it off at his office. 

Oh, so there is a difference between the extended release verapamil and the immediate release?  This is so confusing, all these different types.   

Brew is absolutely right on both points. Verapamil appears to work better than Verapamil ER (extended release) for cluster patients.

As far as 02 goes. it is the first thing that most knowledgeable neuros should prescribe. For most it will knock a headache down in 5-10 minutes. Why suffer for an hour when one breaks thru when you can make it disappear in 5 minutes?

If you choose to ask him for 02 make sure the regulator is at least for 15lpm and use a non-rebreather mask.

Just wanted you to have this information in case the ha's start breaking thru the verap.

Yeah, the medication is indomethacin.

Another thing I want to mention, as I saw some posts on this topic before...  I asked him about the cracking/popping/air bubble-sounding noises in my head and what would be causing this.  He explained that since my eyes fill up with water and my nose gets congested during a headache, what I am hearing is most likely fluid/congestion moving around in my sinuses.  He said I probably also noticed my ears popping a lot, which I have, and that's because they also fill up with some fluid.   

I second what Brew and Jimi said, with one caveat.  I would suggest you try to get 25lpm on your regulator.  You don't have to use that much if you don't need it, but for many of us the difference is about 5 mins to 15 - 10 mins. 

Jerry