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!!

You have to come to the right place and help is on the way!!! For me no drug has ever helped! O2 is the way to go!!! I am 33 and have had clusters for 8 years. I am currently in a cycle and just joined the site myself. O2 will abort a hit, if used properly in 10 minutes. :) I researched it myself five years ago and took it to my family doctor who had no problem letting me try it and I am sure that you will find the same when you share the research that you find. I am going to send you the link from Batch. My new best friend!!!!!! :)

Batch is very helpful with a vitamin regimen as well and I just started it today to try to abort and prevent cycles.

Tell your mom to hang in there!! Read about the triggers and avoid them all. Try ice packs until you get the O2 and work on that tomorrow!  :)
Best of luck for pain free days ahead!!!
Kim

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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

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

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.  :)

Bless your heart for shouldering the job of researching for your mom. She raised a good kid! ;)

You've already received the lions share of info you're going to need. I'm a 33 year episodic, I'll echo what mommy said about the oxygen. My primary abortive, aborts run 6-8 minutes for me.

Like Bejeeber, I'd encourage you to get her on Batch's "D-3" regimen. In addition to a LOT of basic health benefits, this regimen is helping reduce a lot of CH suffering.

Has she tried the energy drinks? Grab a four pack of sugr free red bull, have her chug one down at the first sign of an attack. Many can abort or really reduce attacks using them.

Glad you found us, hope we can help you get mommy some relief.

Joe

Hey Samantha,

Welcome aboard CH.com.  You've come to the right place...  and you're located next to one of the top neurologists in the Nation in Dr. Rozen as you've already noted. 

Call his office again and ask if the demand valve study he's running is still accepting participants.  If it is, sign your mother up asap as that's the fastest way to get her on his patient list.

Check your PM InBox...  It's in the upper left corner of this page.  Click on 1 message is new  I've sent you some additional info.

Take care and again, welcome aboard.

V/R, Batch

Wow, what a great intro to O2 therapy for CHs that would be! Anyway, do follow up on the advice you've been given. And as you read this site, look for three things to note and bring with you (have your mom bring with her) to the next doc visit: meds used for aborts (imitrex injections using the tip at the left, imitrex nasal spray, migranal or zomig sprays) along with all the O2 info you can get.

Second, have her ask for a prednisone taper. Usually starting at 80mg or so, and then tapering down gradually over the next 7-10 days. Many find this will interrupt their cycle and give relief while waiting for the longer term preventatives to kick in.

Third, there's a whole bunch of effective preventatives, but often in higher doses than usually prescribed for label use. For example, we find verapamil (which usually tops off at around 240mg/day) is effective for us starting around 240mg and going as high as 960mg/day. It's a gradual increase under doctor's supervision. Other drugs like lithium and topamax have a history of effectiveness as well, but I'd stay away from the topa unless I had to go there.

Hit the O2 as ASAP, and couple it with the energy drinks. There is a way to manage this beast. God bless. lance

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

Welcome. Sounds like you are on top of things. Something you should know is how affordable O2 is. For $375 you can get your own equipment and be using it tomorrow! If interested in going that route, just ask for help.
Ever thankful for people like you!
Best wishes.

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.