Wow, this is my first time posting but I've been reading the message boards and am truly blown away by the strength you all have. There's so much encouragement and hope in these posts and I could really use some hope for myself and my mother (who suffers from CH) right about now.. I'm going to try and keep me this short as possible but here's my story..

After 2 years of being misdiagnosed my best friend and mother finally got the answer to her excruiting pain and was diagnosed with cluster headaches. Her attacks come in Spring and Fall faithfully, once a day everyday same time, we could set our clocks to it, I'd dim her light get a glass of water and check on her 45 mins later knowing she didn't like people around her or being touched during an attack. It's been difficult, seeing her in pain about 6-7 scale but managable with a prescribed nasal spray & injection.

However 3 weeks ago after an awesome summer with no CH attacks she had a horrible intolerable tooth ache, she went to the dentist and they pulled her tooth.. Well it wasn't her tooth that was the problem it was her CH attacks. She never had pain in her tooth from an attack before! Her "beast" has turned on her. She's been having 3-6 attacks a day, Saturday her and I along with my daughter spent the day shopping, she had 5 attacks in 7 hours! They come on at a 6 and it's 20 mins of straight 8 scaled torturing pain. Her jaw and neck is in pain, her scalp sensitive she can't wear a hair tie during or after an attack. She's physcially exhausted and completely drained everyday. She went to her family doctor today who told her there's nothing they can do, the nose spray is hardly working and she can't use it 6 times in one day. Her doctor is by own admission not at all knowledgeable of CH but said a specialist won't be able to help since this disease is so rare.

I started today looking up doctors, Dr. Todd Rozen's office is only 20 mins away but the lady told me today he's so in demand there's a longggg waiting list. I just don't know where to start but refuse to believe she has no option but to live like this

Thanks for listening and any advice or feedback is grately appreciated!!

Hi Samantha,

Good news:

There are many REALLY GOOD options - living like that is not necessary at all.

One thing that can get you indoctrinated the quickest is something that didn't occur to me when I first arrived here - if you read thru  a good dozen or so of the other threads in this Getting To Know Ya forum, you'll see the core things that really work being recommended over and over.

Yeah doctors just tend to be grossly negligent when it comes to CH, including the typical headache specialist who routinely makes a CH'er in a critical crisis wait months for an appointment. 

Until your mom can get that appointment though, forget 'em - they mostly just have toxic crap to push on her anyway.

Meantime,  O2 as outlined in the oxygen info to the left can be acquired without prescription at a welding supply place if necessary. This is a great (and ultra popular around here) non toxic abortive.

Then starting right away I think it's an absolute no brainer to go on the specific D3 for CH regimen as a preventative that's outlined here: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The clusterbusters approach is actually a more effective preventative than any drug for many CH'ers. Check out this Newsweek article on it: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

And this must see video:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

There are lots of other good ways to skin a CH beast but I've so far mentioned some that I think are the most effective and least risky. 

Thank you everyone for the responses and awesome info! I'm on my phone right now reading them all and can't wait to get home and take everything said, info sent to me our and work on our "game plan" - Step 1, oxygen! I can't believe my moms family doctor completely talked her out of getting oxygen without any research or looking into it. Some possible good news, Dr. Rozen's office called today to get specifics on the nasal spray moms been using, they said they "wanted to make sure Dr. Rozen can help" & they would call back when he looks over it again! I was surprised since I just called yesterday to hear that they at least started looking at her appointment request.

I'll post my game later on, it's so hard being new to the world of cluster headaches, it's only been 1 year since the official diagnosis and we were only offered nasal spray or injections that cost $375 a pop (mom has insurance but it doesn't cover prescriptions). I've been researching for 48 hours reading reading reading and feel I could offer a CH suffer better options haha

I also don't understand the confusion that some doctors have about prescribing O2, although I've never had a problem with getting it and most doctors I've spoken to have almost always brought up O2 first thing.

About Dr. Todd Rozen, I know there are 2 Dr. Todd Rozen's (Although I think they spell their last name differently) that are 'headache specialists'. If this is the same Dr. Todd Rozen that used to work with the Michigan Headache & Neurological Institute (MHNI), I would really appreciate some contact information on him now. Thanks in advanced.