Hi Joseph.  Welcome aboard, but sure wish you didn't need us.

My recommendation is that you start reading.  Particularly the oxygen info button on the left, then the Cluster Specific section of the board.  As you come up with questions feel free to ask. 

The first thing to do is to get rid of your fear.  CH is not fatal, does not damage, and is treatable for most of us here.  You will have to do your own research because most Drs know very little about this ailment.  You will need to find the means you want to try and then work with your Dr to get it approved.  The first thing I would do knowing what I know now is to read and print out some of the pertinent information from the Oxygen link, take it to my Dr, and insist on a prescription for Oxygen at a minimum of 25 lpm with a non-rebreather mask (get the O2ptimask, available on this site, it was made for us by Linde).  You may not need the whole 25 lpm, but it is easier to get it and use less than to need more and not be able to get it.

Stick around.  You will find a lot of info and great support here.

Jerry

Hi Joseph, I'm a supporter, not a cluster headache sufferer. I've supported my husband for over 20 years of this beast.  If you have someone in your life who will walk this path with you, please send them here.  We have a supporter's section just for us and those who need help in their function as a supporter.

That out of the way, I'm sorry for the reason you had to find us, but glad you are here.  The sufferers here are incredibly compassionate and will help with whatever they can.  Ask any questions you may have (there aren't any stupid questions).  These folks have seen most, if not all, of the questions come their way at one time or another.

Welcome home - we're kind of family, now, you know.  We usually have a convention in July or thereabouts.  I highly recommend attending - if for nothing else to actually see that you are not alone.  The sufferers here, and their devoted supporters, have become a second family to many of us.

Well, the first test they did was the catscan. Then they did the catscan. The first thing the doctor was thinking was CH and he said that the only reason why we did the CT and the lumbar puncture was just to rule everything else out. And along the lines of meds i took was Moltrin 500mg, Tylenol extra strength 1000mg, Naproxen 600mg, and Advil 200mg and i got no relief from anything. And while in the hospital, after the spinal tap they gave me an IV to give me some ibuprofen which also did nothing.

So, if your doc has ruled these icky things out, has he given you a diagnosis yet, and has he given you some kind of treatment plan, i.e., preventative and abortive (the oxygen falls under the abortive category)? All those over the counter things are just going to tear your stomach to bits. And they offer little to no relief.

Wow. I'd be all up in his grille. If he's ruled the bad shit out, tell him to treat you for it. Even oxygen won't harm a healthy person. Tell him to take baby steps if he must, starting with O2.

His comfort level and your pain level are measured on two completely different scales. You need to make this guy see that.

Yeah, thnx, and i wanna ask something. Is dizziness another symptom with CH because when a headache would go away i'd start feeling light headed.

All the doctor did was bring up the words abortive and preventive but didn't bring up any medicines. He also gave us a number for a neuro in the hospital but we can't get through to them. And i think he only gave me the ibuprofen for the pain from the after effects from the Lumbar Puncture.

They did the Spinal tap to rule out bleeding in my brain and meningitis. The doctor was saying that both of those things can cause severe headaches, but i have none of those things.

Did you take the CH quiz on the left to make sure they have diagnosed you correctly?
I was misdiagnosed with CH and turned out to have something similar called SUNCT to best to make sure so you can get them to put you on the rite meds and abortive as soon as possible, if it is CH get the O2, I have heard it called a life saver by many.

Welcome Joe, (from another Joe!!).....yeah the early part of diagnosis can sure be a rocky road. As others mentioned, the good news is it won't kill you. Just hurts a bit. Many find the best approach is the 2 pronged approach others have mentioned:

1: A good preventative medication. This is a med you take while on cycle, getting headaches, in an attempt to reduce the intensity and frequency of your attacks. I use lithium at 1200 mg a day, blocks up to 70% of my attacks. With no prevent on board, I'm usually a 2 attack a day guy, one mid morning, one early evening.  Verapamil and topomax are 2 other popular first line prevents. Some have had to combine the lithium AND the verapamil to get relief. Sadly, about the only way to figure out what works best is trial and error. And DAMN the errors hurt!

2: An abortive strategy. An attack is starting, now what? Oxygen, at a high flow rate, at least 15 LPM, through a non re breather mask, should be your first line abortive. I can kill an attack in 6-8 minutes with my 02. That compares with the old days of a 90 minute ride followed by that 12 hour "headache hangover!"

Imitrex injectables and nasal sprays are popular abortives on the board. For now, I'd suggest buying a six pack of energy drinks. Any containing the combination of caffeine and taurine. Monster, Rock Star, etc. Many can abort or at least really reduce an attack by chugging them at the first sign of an attack.

Welcome home, damned glad you found us.

joe

Hi Joseph.

So sorry that it's because of this horror that we meet. First: CH, as horrible as it is, isn't something out to kill you. It runs its course and then the only thing you have to worry about is its return. It isn't something that has any lasting effect other than making us hate non clusterheads that say they know what it's like.

Read up on this thing here. Your doctors aren't likely to know more about it. I was fortunate in that I was seeing a neurologist for my seizues so I had no waiting. He knew exactly what it was and had a small pamphlet on it and this was 1969. Learning what it was was the best therapy at the time.

It's a horror but CH itself isn't part of some more exotic malady.

Good luck and stick around.

Charlie

I don't get the dizzy feeling after. Just that hang over feeling that'll linger for up to 12 hours.

Joe