Finally was able to get in to see a neurologist and there is now doubt in her mind that I suffer from clusterheadaches feels good to know that I'm not crazy and what I figured was the case is the case. 
Should have done it years ago had I known what these headaches were regardless things are looking up and I do not need to be afraid of when my next cycle comes.

My neuro said because I am not in an active cycle at the moment she would rather wait until the next one comes about.
She said we could start prophylactic measures now but her concern there is that when the next cycle comes we will have a hard time distinguising how well the meds are working and what works best for me. When my cycle returns I am to call imediately and they will get me in asap.

She has given me a form to take with me when I travel anywhere that has med information if I need to see any doctors for an attack. I believe she was going to send my doctor a copy as well so he will know that I DO suffer from clusterheadaches and the meds he can prescribe.

Her plan for prophylactic meds is  1.Verapamil 80mg to start 2. The option to ad prednisone in high dose then ween off. 3. Melatonin which I am already taking myself but she told me to increase my dose from 5mg to 10mg.

And for symptomatic meds 1. Oxygen! 2. Imitrex injection/ and or nasal spray from what she tells me the nasal spray does not need to get processed through my liver first so it is quicker and 3. Zomig nasal spray 5mg.

Now I can change my signature cause I no longer need to fear when the beast returns!!! Granted it is a waiting game for now but I can rest easily knowing that I actually have a plan of attack to help manage the pain. Hallelujah!!! :) :) :)

I am happy for you! It sounds like your Neuro is really ready to work with you and has knowledge of clusters.

Anyway that you can start stockpiling up on your imitrex injectors and nasal spray so that you will have a full arsenal when they come?

It may be different in canada but down here most companies only allow 6-8 injectors a month which is not nearly enough.

Wow, a doc who understands CH and is up to date on treatments, what a blessing!!! Start scouting out the oxygen supply system where you live. Do your research now so when a cycle starts, you have the number to your doc to get the prescription issued immediately, and a phone number to your supply company to get the stuff delivered. The critical points, at LEAST 15 LPM regulator, preferably one that goes to 25 or better, and a Non Re Breather Mask.

Sounds like you're off to a GREAT start!

Joe

Only one item on which I'd take issue with your neurologist: Nasal sumatriptan does NOT work faster than injection. Perhaps this works in her head - in theory - but that is not the experience of many, many cluster headache sufferers around here.

I agree with Brew. Most find that while nasal triptans are faster than pills, injections appear to be faster.
Almost as fast as 02. 5-10 minutes for some.

Thanks for the reply's everyone I will start doing some reasearch and getting ready. When you's refer to the nasal sumatriptan is that the zomig??

Just another dad wrote on Dec 7^th, 2010 at 4:11pm:

Thanks for the reply's everyone I will start doing some reasearch and getting ready. When you's refer to the nasal sumatriptan is that the zomig??

No - sumatriptan is the generic name for Imitrex.

Zomig in my experience works quickly.....just a tad more time to abort than a shot. If I have to use a triptan, which isn't often, it is my drug of choice.

Your experiences may (and probably will) vary.

Just because I have CH does not mean I am not crazy! :D

Glad you found a doc that has a clue.  I hope you never need to use any of that information, but I'm glad you have it, cause you will need it.

Jerry

Sounds like a great meeting. It's good to hear of ones like this and not the horrible ones that so many people seem to have.

The verapamil at 80mg a day is pretty low. Many need 360-480mg or higher for it to be effective.