G'day Dan,  welcome,  and certainly you're on the right track in thinking you need a proper diagnosis rather than believing everything you read on the net.  Finding a disease that perfectly suits your symptoms is quite easy,  but that doesn't rule out other conditions with the same symptoms that need an entirely different treatment. 

Your doctor is a great place to start but they have remarkably little training in the many different headache types out there,  so you really need a referral to a neurologist  -  particularly one who specialises in headaches.  There's a thread around here somewhere on how to find one so I'll look around to see if I can find it for you.

You can also help him out by starting a bit of a journal listing every hit  -  when,  how long,  intensity,  what you were doing at the time,  what you'd been eating,  all that sort of thing.  It's surprising the patterns this can show up and perhaps allow you to manage things a bit better.

In the meantime just try to stay positive,  kill a can of Red Bull at the first hint of a hit,  and we'll help you every way we can.

Full steam ahead and damn the tropedoes!

Brian down under.

Hi Dan.  You don't have to be chronic to get the shots.  What you do need is a proper diagnosis first - it's a nasty drug and you don't want to take it unnecessarily.  Besides that and joking aside, you should get a scan to rule out the nice big tumour.

Ask to be referred to a neurologist, and if it is clusters you need imitrex shots or nasal spray ( don't bother with the pills - they are too slow to act).  the shots should take care of a bad cluster in less than 10 minutes.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

If you look at the standard diagnostic criteria for CH (look at the above link) you'll see that the first four criteria are ensuring that you have the appropriate symptoms. This is what the nurse practitioner checked, however this is just the easy step. What she didn't and couldn't do was the last step which was to rule out all other possible causes. There are multiple other possible causes for the same symptoms and it needs someone with the right knowledge and skills to do this, which is why we always strongly recommend that people see a headache specialist to get the confirmed diagnosis.

Once you have the diagnosis, then that opens up the right treatment(s) for whatever it is.

The nurse practitioner may well be right, but some of the alternatives can be very serious, so you need to get this confirmation.

Hi DanAge50,
Welcome to Clusterville, a nickname of this fabulous website where you will have opportunity to educate yourself, share knowledge with those medically treating you for CH's, and be supportive to others.

You've been provided excellent advice from reputable & well respected others thus far...specifically to see a headache specialist; not some nurse practitioner who claims to have had a CH before. Get yourself checked out, properly diagnosed to rule out anything that may be similar to the symptoms of CH's, which may actually be more sinister and harmful such as a tumor. And that Imitrex injections are not limited to those who are unfortunately chronic, and that Imitres pills take too long and not generally advised as effective compared to Imitrex injections and sometimes Imitrex nasal sprays.

You have more information here on this website that any other source - gathered and shared these past 20 years or so since this website creation; and thousands upon thousands of posts to provide educational tools to assist you and your doctors. Keep in mind - we are NOT doctors, just fellow CH'ers who have learned a few things over the years and are always still learning thanks to those willing to share their stories and educational findings.

Many of the best posts are found by searching in the archives from years past, as most of the original members of this site unfortunately do not contribute much, if at all, any longer. However you have already been fortunate to have advice by some of our most respected current members who do post regularly and are very knowledgeable and caring individuals from all walks of life who unfortunately also share this curse. Needless to say, You are NOT alone! We DO understand!

There are no stupid questions! Everything you need to understand about this disease is here on this site. Someone will reply to you at all hours of day or night.

Suggest you begin your education on CH's by reading everything from the yellow tabs on the left side of this webpage. You will no doubt become very pleased to learn more than your doctors, as they come here for their education. This website is the best source of information found anywhere in the world on CH's.

Keep in mind that as Maz pointed out, Imitrex is a tough drug. There are other abortives available to you that are less harmful on your body and wallet. e.g., Hyperventilating 100% oxygen with a non-rebreather mask at 15 to 25 lpm. This can be prescribed or use welder's o2 available without prescription. See the o2 tab and plenty of threads regarding oxygen as abortive. RedBull energy drinks were suggested already...read on this too as a quick abortive option in a pinch.

It is not advised to suffer through a cycle by using only abortives. We suggest you educate yourself and consider some of the Preventative and Transitional treatments, in addition to the Abortive treatments.

Many CH'ers swear by the anti-inflammatory vitamin regimen which is all natural, no prescription required, and inexpensive comparably to traditional medicines of Preventative, Transitional, and Abortive treatments.

Do some reading - ask some questions, feel free to vent your frustrations, get yourself pain free, live between the hits!

Many CH'ers have left this site due to lack of privacy as it is a public forum and easily found via search engines.

Suggest you do not divulge too much personal info to protect your anonymity. Keep in mind as an option that we can help you get to educated medical professionals in your area who are familiar with CH treatment and recommended by others on this site who reside in your area....so if you share where you are located, we can steer you to those recommended doctors.

"Together We Fight!"
Pain Free Wishes

-Gregg

Dan...it's hard you say you are a lucky man....but you ARE! Been here 20 years...been a clusterhead for 36 or so....and the post by Gregg (Las Vegas) to you is among the BEST I have EVER seen.....just remarkable...lissen up bro'...THAT is some PRICELESS stuff...…………


Best

Jon


...and maz...

Thank you very much Greg for that thoughtful (and well crafted) advice!

Here is where I am at:

1. I have learned to eat a light dinner, I will have one at 7pm, and if I'm full the red bull won't work. As I sit, I just dodged one... well it was 20 minutes but I'll take it. Later I can have a snack.

2. I will probably have another at 11. For this I will use the nasal (or injections) of Imitrex (which I have obtained). Looks like I only get a few a month paid by insurance - that was a bummer to find out, oh well.

3. I got the referral to a headache neurologist, my doc says they will call me. I have started a headache diary noting when it hit, 1-10, what I did, and how long it lasted.

4. Reached out to Batch and I went shopping. I have lab scheduled for tomorrow to test 25(OH)D levels, and will begin the anti inflammatory regimen "as soon as the syringe is full" (his words).  I already tested a 10,000iu load for reactions, so will start 12 day loading tomorrow.

5. Thanks for the tip on the o2, I will research that tonight. It looks like I may need an alternative when my Imitrex runs out, lets hope I get ahead of this with the regimen before then!

Thanks for everything guys, I'm feeling much encouraged!! -Dan

Dan, you can make the imitrex shots last longer if you split them.  Most of us find that half, or even a third of a shot is enough. 

On the left of your screen highlited in yellow is  "imitrex tip" which shows you how to do it.

If you have the other kind ( like a pen) google  "cluster headache splitting injections, and there's guy on youtube shows you how it's done.

I do this all the time - it's a much easier and gentler way because those auto shots go off like a nail gun.

Thank you for the encouragement Gregg - I'm very motivated right now to feel better, and when the thing doesn't have me on a walk I've been reading!

Guys so tomorrow I'm going to push for O2, I've also talked to Joe at Firehall 6 and he says to come on in if I get in a bad jam, no fireman would refuse me he says. Never done 02 but it's a net if I start to go batty.

Going to also ask the doc to pre-approve significantly more triptan nasal and injection for the next few weeks if she is agreeable.

I started the Regimen 50,000iu loading schedule on day 3 and I am checking in with Batch regularly.

Now... All I know about that is left which I'm not pursuing with my doc is Prednisone taper/Verapamil ramping. I know this may effect how I do the regimen, I'll check with Batch, but I'm getting a little worn out guys... 5 of these buggers yesterday.

Neurologist may call tomorrow, but I have to wait on his office to contact me.

What would you guys do, regimen, o2, and abortive or add more pharms??

-Dan

OK got it! This non-rebreather mask I rented looks like a piece of shit, but I'll give it a go later. Gonna order the ClusterO2 Kit right now. Also the doc is going to try and get me a lot more sumatriptan. Hopefully I can keep it together and d3 will start working. I decided to wait on pred and see if I can muscle through it with all my new tricks and new friends. THANK YOU FOLKS!