I'm 36 and have been having horrible headaches since I was 20. After many different doctors and different diagnosis, my new primary care doctor said I have cluster headaches.  Finally!  I'm meeting a new neurologist tomorrow and wanted some advice.  What should I expect/ask?  My primary care doc prescribed me Imitrex but I can't pay $65 for 6 individual uses when I need them almost daily.  I'm a SAHM to 3 kids.  I'm always tired and I bet the headaches are part of the reason.  Also, anyone else have anxiety that may be due to CH?

Hi Lisa

For the neuro appointment I'd work out what you want to ask, write it all down and take the list of questions with you. Take notes and tick off the questions as they are answered, that way you'll not miss any plus you'll have notes to refer to later.

Whilst your primary care doctor might be correct in his diagnosis, you should get the neuro to confirm this as there are several other possible causes of CH like symptoms, so it is essential for someone highly experience in headaches to confirm the diagnosis.

Things to look for are a preventive and an abortive (or two).

Preventives cut down how many CHs you get. People will often start with a taper dose of prednisione over about 10 days whilst they start on a longer term preventive, something like verapamil, lithium or topomax.

For aborting CHs, injectable imitrex works well, but is expensive. Breathing oxygen via a non-rebreather mask at a high flow rate works as well, is cheaper and side effect free.

Keep reading and asking questions, you'll learn a lot here!

Lisa,

WHERE in TX are you? If this neuro don't work out I may can help you find one that will...

Insist on O2 - it's inexpensive and works really well in aborting (if used right - read the O2 info on the left on the "how to use".. and be sure you have the RIGHT mask and the right Liters Per Minute -- at least 15 LPM - 25 recommended.. or it won't work worth a darn).

Ask "how many" Clusterheads the neuro has treated and what his recommended treatments include (go prepared with what YOU know about CH).

If he acts like he's insulted that you "ask" questions LEAVE ... he ain't the right one. Most of us have "interviewed" several neuros before we found the "right" one.

This may come as a big shock, but there are STILL neuros out there who don't have a clue what a CH even is. They lump them in with migraines and act like they're doing you a big favor to tell you anything. Those are the ones you want to AVOID.

I'm not trying to be discouraging. Hopefully this neuro will be wonderful and will get you on the right tract to some PF days.

You might ask about cafergot instead of imitrex. It's an OLD vaso-constrictor and is a LOT cheaper than trex. I've used it for years and like it a whole lot better (doesn't seem to have near the side effects I found with trex).

But the O2 has brought joy into MOST of our lives big time. About 70% of the people on this board swear by it and I'm one of them. But the mask and the flow rate are the key to it working.

Let us know how the appt. works out and what we can do to help you. We love PF days..  :-*

Hi Lisa,

What they said!

I would add to BarbD's comments that not only have I had to interview a few Neuro's I also had to fire a few. 

On the O2, don't settle for less than 25lpm on the flow rate.  The difference between 15 and 25 is amazing!

Ask for a Vitamin D test.  Read Batch's post, 123 Days PF and I think I know Why [b][/b] on the meds and treatments board.  It has made a lot of difference for a lot of people.  Unfortunately, I'm not one who is PF from it, but I know a BIG difference from it.

Hang around this place.  There is a tremendous amount of information available here that even your Dr doesn't know unless you find one of only a handful of practitioners in the world.  You will have to do your own research and know what you want to ask the Dr to try.  If you get any pushback be able to give reason for what you want.  If he continues to push back push on and find a real Dr.  As someone has in their tagline (paraphrased) "If you count on your Dr to cure you, you are in for a lot of hurt"  (with apologies to the author.  I'm to lazy to look it up. :-[)

Jerry
BTW, welcome to the nuthouse family!

He started me on a low dose of verapamil and will re-eval in a month. I already have low blood pressure so I have to be careful with it. I'm also taking vitamin d, magnesium, and b12.

Anyone else have jaw pain related to CH?

Neuro was great in listening to me and taking me serious. I've been to several and I like him the best, so far!

that's great news.. Hope the verap works for you.

And yes..to the jaw pain.. yuck! I get ear cramps also (feels like a risen - can't even touch the thing when it's cramping). Try chewing gum.. it helps me some on the jaw pain.

did you ask about the O2 for the aborts? That still works best for most of us.  :-*