I just recently found out that i have cluster headaches and i'm pretty scared about what can happen. I recently got back from the hospital after they did a spinal tap on me to make sure that it wasen't anything worse than it could be. I'm just really nervous and would like some information about what to look out for.

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

Thanks alot jerry. I've only ever seen stuff about Cluster Headaches on TV and at first thought was i was feeling is just a really bad migraine. But when i went to the hospital and told them everything that was happening, it all just clicked. I took a bunch of pills to try and stop the pain and all that did was give me some false hope in thinking it would go away. I'll be sure to talk to the neurologist about the oxygen. Thanks alot again.

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.

Hi Joseph.

I'm a long time sufferer, and I'm just wondering what other tests have been run besides the spinal tap?  An MRI or CAT scan could also be in order to rule out other nasty things.  Other conditions can mimic the pain of CH but also be very treatable, or if treated as CH (when it isn't) could be very dangerous.

Plese give us a rundown of every test that has been run and all medications you have tried. 

Don't worry we are asking so we can help.  Not just being nosey.

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.

sry i meant they did the catscan and then the spinal tap

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.

All the doctor said was that he thinks it most likely is CH but needs to see some kind of word from the Neurologist, and I can't find one that takes my insurance.

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.

Can you tell us what your symptons are. How many attacks a day and how long do they last? Do you pace as you are getting hit because you can't set still?

Do they come suddenly and leave just as suddenly as they came? Just trying to find if your doc know what he is talking about.

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.

Well I have to say that at the very least your Doctors aren't very well versed on CH, as no Doc who knows about CH would do an IV ibuprofin.

No mention to you of any preventive meds?  No abortives?  Looks like it's time to get yourself a referal to a Headache Specialist Neurologist.  Not just any old Neuro, but a specialist in Headaches, and arm yourself with a copy of your recent medical records.  There is also a good hand out to print off and take with you, but I'm at work right now so don't have the link to it handy.

Standard beginning treatment would consist of a prednisone taper with a ramp up in Verapamil.  O2 at a minimum of 15lpm preferably a higher flow regulator and a non-rebreather mask, as well as injectable Imitrex as first line abortives.

I'll be back with more info later on after I get home from work this evening.

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.

Hi Joseph and welcome to our family which you are now a part of. 

After being chronic for 22 years and HERE for 11...I do not think I have ever heard of a spinal tap being done to rule out something else.  MRI and Cat scan YES!

If you read around here for long you will see that so many of us count on pure 02 as a 1st.-line abortive. 

There are many preventatives that we use also.  verapamil, Lithium, Caffergot and many others.  I am surprised that your Dr. didn't mention anything to you.  Well...maybe I'm not.  Dr.s have exactly 5 hours of training in headaches in medical school and that is ALL kinds of headaches, so is it any wonder that most of them are clueless?   

Your assignment, shoudl you choose to accept it is to read, read read around here and on the OUCH web-site.  That site as well as a lot of info are all in the links to your left.

There will be a pop quiz in a week.  ;)

Linda

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.

I've had meningitis, and yes the headache is bad, but it's constant.  It doesn't go away.  Please go back and look at Jimi's questions.  A lot of what he asks is key to seeing if your doc on the right path to a correct diagnosis.

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.

I took the quiz and the results lean more towards CH, but I would rather wait for word from the neurologist and see what they say. I don't wanna jump straight on the fact that i have CH untill i see someone who can give me the final word. Thank you everyone for your answers and support.

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

Joeseph,

Sorry when I answered you earlier today at work I was fighting off a shadow, and my brain was not working properly.  I directed you to O2, and I stand by that, but in the meantime get an energy drink ready to hand for when the next one hits.  Just as soon as you feel the beginnings of the attack chug the energy drink down as quickly as you can possibly down it.  It doesn't matter if it is Red Bull, Monster, Amp, 5Hr Energy (my prerference) or any other tht you can find on sale.  Just be sure it contains both caffeine and Taurene.  The Taurene seems to turbo-charge the caffeine and will often abort a hit for me in just a few minutes.  You do hve to chug it down though.  If you just drink it slowly it doesn't hit quickly and hard enough to do the job.

I mentioned 5Hr Energy is my favorite, and it is because it is small, and doesn't tear up my stomach as badly.  It also contains a fairly high dosage of B Complex vitamins that help me to maintain an emotional equalibrium after the hit.  You can purchase them at WalMart in a 6 pack for about $12 in the pharmacy section.

Hang in there.  We've got your back. 

Jerry

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

Thnx everyone for all your support, and i'll be sure to try the energy drink some time soon. lol. I also wanted to ask, does anyone get dizzy after an attack, because when my headaches wear off i start feeling light headed.

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

Joe

Hi Joseph,

I sometimes will have a lightheaded feeling after a particularly bad hit.  I always just figure it is from exhaustion. 

Can you tell us about your headaches?  And please do try the energy drinks.  It works well for me too!

Welcome :)

Jeannie

When i have my headaches it either burns or has a stabing pain, normally on the right side of my head. Its in the back of my head or towards the front behind my eye

I do not get dizzy after.  I get more exhausted and stunned, like the feeling of waking up on someone's couch sunday morning after a hard saturday night

maybe somone else feels dizzy post hit? jeannie mentioned she feels lightheaded, due to exhaustion.  is that about right?

yeah, i feel all light headed and out of breath, like i just ran in the heat.

I will often feel light-headed and unsteady.  I think it is from all of the adreneline (sp) used to fight it.  this can last for up to half an hour, followed by just a dazed exhaustion for a while when I've had a bad one.

Jerry

These things absolutely wipe me to no end. Just get on the o2 as soon as one starts. The night ones are tricky. But high flow 15 lpm or greater of o2 and a good mask should work take care of it. Be strong.
PFDAN
Jrcox