Hi my name is Narada and I was told last week that I have cluster headaches.
I have been dealing with migraine headaches since I was 11. And I've been able to deal with the migraines I thought pretty well up until about two years when they seem to happen more and more every few days.  I was given Imitrex and that worked maybe once, so I stopped taking it. I was good for sometime.  You know, a random headache here and there but nothing that I couldn't handle! Then 3 weeks ago all hell jumped off.  I started having a headache every morning at about the same time and I tried to put it off on stress (bills, kids, ex-wife, life), but I let a big block  of crap go, but that didn't help and the headaches stayed. So every morning same pain, and it was happening 3 to 4 times a day.
Last week Wed. it got to be really bad. Was at home alone with my 3 year old baby girl (I have two beautiful girls), and I had to call 911 because the headache crippled me, and I just couldn't move at all. Noelani (my 3 year old) was the greatest ever and got her daddy the phone and talked to her mommy on the phone until help came! She was so calm and gave daddy a tea party. We waited forever for EMT to come because when you call 911 for a headache nobody is in a rush! So I wait! But the kid is so calm it's helping me not freak out.
I got to the ER to be treated like a 5th class citizen because I had a headache! I was given everything from tylenol to reglan to morphine and my body laughed it off! And was told I just have a migraine and to take some naproxen and go home!
I went to my own doctor and he was the most honest person I was dealing with at this point, he said he couldn't help me at all and he was sending me to a specialist because from telling him what was wrong with me there is nothing he could do, and to some that sounds jacked up, but he made me feel better just by not BS'ing me! So off to the neurologist I went.
Was with the neurologist for about 30 sec and he told me I have what are called Cluster Headaches! So now I have a MRI, MRA, NPA & NPC on my to do list!

The meds I'm on are,
Depakote & Zebutal

I hope to get to know some cool people you understand how I  feel, because unless it happening to you, you can't begin to understand the pain and what not!

Thanks for letting me vent and all!

Hey Narada,

What a crummy, lousy club to have to be a member of hmm?

BUT - it's possible for many of us to get very good control over these CH buggers, so you must hang around and get the skinny.

There will be things to look into such as O2, at the oxygen info link on the left of this page, and the sort of clusterbusting that people are having real results with over at clusterbusters.com.

We're here to help you slug this beast back with some mighty counterpunches. 

Start reading like a madman as you have to educate yourself to have much of a chance at a succesful treatment program. We have not found a cure yet, but with a little work on your part they are manageable. A 2 pronged approach works best for many.

1: A good prevent med. This is one you take daily while on cycle to reduce the frequency and the intensity of your hits. I use lithium, Verapamil is kind of the standard first try prevent and topomax has a loyal following. Takes 10-14 days for the prevent to start working, many do a prednisone taper during that time to help them through.

2: A good abortive. A headache starts now what. 02 will start sounding like a recording. I think it was neuropath that said what an awesome psychological advantage it was to have 02 handy. Knowing if an attack started, you could almost always smash it and be pain free in less then 10 minutes using just oxygen, gives you such a mental break from the threat of  attacks. Read the oxygen info tab as it must be used correctly or it's worthless.

Energy drinks, monster rock star, any which contain the combo of caffeine and taurine can abort or  really reduce an attack for many if chugged at the first sign of an attack. Imitrex injectables or nasal spray are effective for many. The pills tend to be less effective as a CH build faster then your tummy can absorb them.

So glad you found us, get busy reading and asking questions!

Joe

Please keep us informed about any meds changes your doc makes.

Read the PDF file, below, and start to educate yourself about how to cope with cluster. As you read this article you will see the standard treatments for cluster and you can use this information to discuss what the doc is advising.