Good God....First let me say I'm very sorry for what all of you guys have to go through with these specialists.  It's almost like they are trying everything in their power not to consider the mythical Cluster Headache as even being an option.

First off, the doc was a good man, and thorough. 

Anyhow, moving on for those of you who don't get the reference...He really was very focused on detail and studied her headache pattern very closely, asked a ton of questions about the characteristics of the headaches themselves, and generally was not in any type of rush to get the appointment over with.  This moves him up at least a notch in my book compared to many docs I've seen personally.  (Which puts him at notch 1)

That being said, he did use the word "cluster" to describe the patterns and admitted it did not sound like regular migraines.  (We are getting a little closer)  However, his diagnosis was Chronic Paroxysmal Hemicrania.  When I asked him if CH was a possibility, he said "no, because CH are mostly in men and CPH happens mostly in women".  I immediately thought, "oh God, here we go again".  My wife gave me the "don't push the issue" look.  So needless to say, Oxygen was not something he saw a need for. 

He prescribed a 7 day Prednisone cycle, tapering off the last few days.  I remembered this also being a route that has worked for a few episodic CH sufferers so I figured we'd roll with that, along with the oral Imitrex (which truly has been working)

The doctor also ordered an MRI to rule out anything more serious, which I was glad for.  She has a follow up appointment with the lead headache specialist in 3 weeks.  If the Prednisone doesn't have the desired effect, we will push even harder for O2 then. If they still refuse, I'll just have to get her some "black market" O2. 

As always, thanks everyone for the help....

Jeeeeeez, it never ceases to amaze me.  They use the words "mostly" and "rare" but don't seem to understand what the words mean. Mostly doesn't mean never, and rare doesn't mean non existant.

As Brian said, if he thinks she has PHC then why on earth didn't he prescribe indomethicin.
It's the first line of treatment for PHC and works absolutely every time. PHC and CH are very similar and difficult to tell apart and Indomethicin is often used (as it was for me) as a diagnostic aid. If it doesn't work, then it's not PHC.

The thing is, the pred probably will work for now and when she has the follow up appointment in 3 weeks everything will be hunky dory. But it's temporary and soon she'll be back to square one. A pred taper should be used for relief while a preventative med (like verapamil) is kicking in. And she still needs an abortive for the ones that sneak through. Your wifes condition may well be PHC, but if it is , then he's not treating her for it properly.  I'm pretty sure (although not 100% certain) that 02 works for PHC too. Perhaps someone will come along to confirm or deny that.

I take it the follow up in 3 weeks is with a different doc. Maybe he'll do better. You said imitrex has had a positive outcome (somewhat). But imitrex doesn't work for PHC and indomethicin doesn't work for CH. It's as simple as that.

I will just add that if she does get indomethicin she absolutely must get something to protect her stomach, or she'll end up with serious damage to the stomach lining, and she doesn't need that. CH or PHC is quite enough for anyone.

Keep us posted, and good luck with your next appointment.
Maz.

I am so grateful for the updates, thank you, and I'm so glad you got the prednisone.

Everything maz said has been my experience too.

One doc can't know everything, second opinions are important.

You must be your own advocate. nobody else will care as much as you. even though that is what you pay them for, lol.

so like people say here, be cautious, and fact check things like test results, and contraindications of all medicines.

Keep trying, you're doing great!

Quote:


Thanks for the tip.  We do have Red Bulls sitting by the bed, but they are room temp.  Any reason they should actually be cold?  She is already very sensitive and gets head and tooth aches from cold food and drinks.

Thanks ice!

Knock on wood, but she has been PF since her headache at 9:30AM yesterday.  Either the headahces took a day off or the prednisone is already going into effect.  Here's hoping that the taper cycle ends this cluster.  (Whether they are truly CH or not)  We have plenty of Imitrex and Red Bulls ready to go if anything pops up. 

Even if they went away this time, I know they would most likely come back at some point.  That being said, we will be in a much better financial position even six months from now. (Wife is between jobs and starts a new one in September)  So if they popped back up a few months down the line I would just buy O2 right off the bat and not worry about a script.

Here's hoping these don't come back anytime soon!

Not that I want her to deal any pain at all, but if we start the d-3 before our next appointment, wouldn't it make it that much harder to get a diagnosis if it works?

Next apt is in 3 weeks. Pred taper is a week long.

I'm so glad she got a PF break!!!

you're right, if she gets a break from the pred, any pain free time is good, no matter why. still will be good to figure out correct diagnosis of course, but in the meantime, I hope the prednisone works regardless of what it is.

They are right, CH can come back after pred.

these kind folks have given me a lot of good ideas to try, and i only can do one at a time, so we all understand you're doing your best, and if we give you tons of info it's not because we expect you to do it all at once. it's just to share anything that could possibly help, for your current & future reference.

wishing you all the best.

I think you've got a golden opportunity here, to go in and get a vit d3 blood test !!!  that will tell you.
My experience from prednisone is that as soon as you taper off, bam its back.  The vit d3 regime, effectively raises our d levels, the magnesium, fish oil have anti inflammatory effects,  exactly what prednisone is, oh how simple it would be if prednisone was the answer,  but we all know how much damage it does with continual use.
The red bull,  well, ive definitely found that ice cold, and swigged down as quick as you can works best. I understand about your wifes problem with sensitive teeth, but i'll tell ya what, a cluster attack makes sensitive teeth feel like a pat on the back !!!
good luck
colin

Quick update.  She has been PF since Thursday morning before she had her first dose of Prednisone.  She is still at 60mg per day and hasn't started tapering.  I know it is not unlikely that these will start popping up again after she begins to taper.  I am just hoping and praying that somehow that won't happen.  We will see.  We have Imitrex and Red Bull close by just in case. 

Follow up appointment is Aug 11th.  MRI is this Friday.  Thanks for all the support and I'll continue to keep everyone updated.

You can buy a D3 testing kit on line. Google it. Not sure how much they cost beacause I'm in the UK but I believe about 25 - 30 dollars.

If the D3 works, it won't make any difference to the diagnosis. I had to wait months before I got my neuro appointment, and I was completely out of cycle by then. Thats the nature of this thing. When it would be helpful to actually have an attack, right there in front of the doctor - it won't happen. When I told him about the D3 he sneered and said "it'll work if you think it will", which suggested that he thought my pain was all in my head - Well IT IS, but you know what I mean.

If you read through Batch's posts you will find a chart showing the levels you need to have. It's pink and green so easy to spot if you're scrolling through fast.

Today is the first day of the tapering. She is still pf. (Knock in wood) Praying that somehow these don't start right back up.