I am sitting here at about midnight, knowing that in a couple of hours, I will be walking around outside in the cold trying to clear my head.  The shadows are following my every move.  I have dealt with these CHs for as long as I can remember, but thought that maybe I was a lucky one.  I didn't have a headache for about 3 years.  I almost forgot about them.  ALMOST.  I jokingly told a friend last night that you don't appreciate what it feels like to not have a headache until you have fought the BEAST 6 times a day for weeks at a time.  People look at me like I'm crazy when they ask if I have a migraine and I simply say "I wish". 

I have done everything I can think of to fight them off, and unfortunately, I've probably done more harm than good.  I've taken my weight in Sudafed, and BC powders, knowing full well that it's pointless. All I have to show for it is indigestion, which is probably an ulcer.  I've gone to the doctor many times, but I get so frustrated with them that I just fight it on my own.  I've taken the Imitrex pills, years ago, but they were so expensive and took so long to kick in that I gave them up.  I got put on Propranalol, but never really saw any benefit from it.  I have to think that there is a better way though. 

I've been researching this for so long, and only tonight found this website.  I knew I found something tangible when I read Jeff's letter about being terrified to go to sleep, and begging the MAN upstairs to make the madness stop.  And Marcus saying that when he's not in pain, he's in dread that it is coming back.  Yeah...  Finally...  People that know what I am going through.  Nothing sucks worse than being in agony and people asking you constantly... "Are you ok?"  "Can I get you anything?"  NO.  there is absolutely nothing that anybody can do for you at that moment but get out of the way.  I'm gonna be walking around rubbing the top of my head, and pressing into my RIGHT temple as hard as i can.  Wishing that i had a third arm so I could massage the back of my neck at the same time.  It's funny how many people say "I get those headaches too", and you just nod. 

I understand how CHs got their nicknames.  "Suicide Headaches" or "Alarm Clock Headaches".  I have totally wished for something to pop in my head and it ending the pain.  I have a wife and 2 young daughters to live for though, so I have to just push through.  Yeah, I am tired as Hell all of the time, and I am scared to death to commit to anything outside the house that I can't break away from at a moments notice.  Funny as it is, I went to the Titans/Jets game last night, and had what I would consider to be a full blown 8 kick in at the start of the 3rd quarter.  It was awful.  I just knew i was on the jumbotron with my head in my lap rubbing my neck and temple.  I tried to put on a game face as best I could, but it was apparent that I was hurting.  My friends kept asking if we needed to leave, but I was going to be hurting wherever I was, so we just stayed.  It actually went away for about 10 minutes, but it was just a teaser, because it came back with a vengeance for the walk back to the car, and the hour ride home.  Nothing is worse than being in the passenger seat of a car while in the throws of a bad headache.

Anyway, I am rambling in my first post.  I know this isn't AA or anything, but...

My name is Ryan, and I am a ClusterHead 

Of course you've known us forever, we're family and welcome home.

All headaches are horrible, but you're among friends who understand, and we'll happily help you to manage the nightmare a bit better.

The most important part is a firm diagnosis of CH so simply bear with us while we get you on track towards a happier life.

Full steam ahead and damn the torpedoes,

Brian down under.

Welcome, Ryan. Sorry you had a reason to come here.
We could use some more information about you. Where do you live? Maybe someone knows a good doctor in your area.
Have you been diagnosed with cluster headaches by a qualified neurologist? Most doctors have no clue about clusters.
Abortive meds? There are no pain killers, OTC or prescription, that will stop an attack. Have you tried Imitrex injectors? The pills are too slow.
Have you an oxygen set-up? Look under the yellow tab on the left side of the screen for correct directions for using it.
Many of us use energy drinks, Monster, Red Bull, whatever that has caffeine and taurine. Personally I take a 2 oz. shot of 5-Hour Energy and it goes to work in about 7 minutes. It also works to kill shadows.
Preventatives? Do you have Verapamil? Prednisone? Lithium?
Lots of clusterheads are having great success with the vitamin D3 regimen. Look for the posts "Anti-inflammatory Regimen" by Batch.
Please let us know. There's a lot to learn here.

Hi guys.  Yeah, I guess this isn't the best way to meet people, but it is nice to know that there are people that know what it is like. 

I have not been diagnosed by a neurologist, but have had multiple PCPs tell me that is what they are.  Fortunately, I do have the breaks between the cycles.  The clusters are terrible for usually 6 to 12 weeks, then they are gone.  I remember starting to get them when I was about 18 or so.  They have always been the same too.  I feel a little twinge in the back of my neck, and then within 5-10 minutes, Hell sets in.  The pain moves up over my right temple and settles behind my right eye. It almost feels like I get partial facial paralysis.  My right eyelid droops.  My face starts to feel like it gets more dense by the minute.  I don't have any real sensitivity to light or sound.  They come on in a matter of minutes, and then go in the same amount of time. 
I have an appointment with an ENT next Tuesday for a CT scan to rule out any sinus issue, and from there will get a referral to a Neurologist. 

I've been reading over the site.  I have had these for so long, and the symptoms are to the T.  i know it is CHs but I guess it is better to be safe than sorry.  The only downside is, confirming that they are CHs won't make me feel any better.  I would almost rather be told that it is something else that they can go in and fix.  The idea of having these the rest of my life doesn't give me the warm and fuzzies.

I started reading about the Vitamin D treatment, and would like to get more info on that.  Also, I have had success in the past by drinking a ridiculous amount of water.  I have never tried the oxygen treatments, and / or the Imitrex shots. 

I actually slept through the night last night with no issues, and feel pretty good thus far today.  I don't want to ginx myself, but I am somewhere around week 7 of the current cycle.  Anyway, that's all I can think of at the moment.

Sorry.  I left out my location.  I live in Thompsons Station, TN, which is about 45 minutes south of Nashville.  I am 37, so am at about 20 years of CHs. 

Also, crazy that you mention the five hour energy drinks.  I thought I was the only one that did that.  Also, I found that a package of Honey Roasted Peanuts and a Pepsi help.  Maybe I just love that combo, and it helps distract me, or maybe there is some benefit.  either way, i now have a craving for them.  LOL

G'day Perks,
If you shoot Batch a PM he will guide you through the
vitamin D3 remedy.

Hoppy

Batch will help you with the D3 if you send him a PM. When you know what you need, go to iherb.com to buy it all in the large doses that we need.

As abortive treatments, there is nothing better than oxygen (must be used correctly to work though) and imitrex shots. Life savers !!!

Welcome to the club...just know that you are not alone. Finding this site after a long night of CH saved my sanity.

Definitely PM Batch to help you through the D3 regimen..he is our guru!

My CH were 1st diagnosed by my ENT after he ruled out sinus issues. Make sure you follow up with a Neuro that understands CH. There is one Neuro listed for Nashville on the ClusterBuster Site.
Dr. Jan Lewis Brandes MD
300 20th Ave N
Ste 603
Nashville, TN 37203

Phone: (615) 284-4680

I found mine by emailing others in my area to ask who they saw.

Wishing Pain Free nights for you.
Judy

Hi Ryan!

Couldn't help but LOL at the "I'm on the Jumbotron crying" part  ;D
We Clusterheads find a bit of consolation in knowing that a few other human beings are in the same dilemma as us.

My worst time being on a long haul flight and low and behold I get an attack mid flight. All the other passengers staring at me ofcourse, wondering what the heck was wrong as i stumbled my way to the toilet in sheer agony.

I also have had my fare share of the "I also get bad headaches" people who have no clue as to what a Cluster is and that the pain comes straight from the depths of Hell.

I thank goodness for the Internet everyday. The ability to gather knowledge and communicate with others with this disease, is a Godsend.

The reason i replied to you'r post specifically is that i too have not had an attack in a while, 2.5 years to be specific. So everyday i wait... I Wait for the Beast to pay me a visit. There is not a day that i do not think about Clusters.

This is my first Post actually and maybe i should of started a new thread or topic but anyway i am happy to have shared my thoughts with eveyone 8-)

Welcome SouthAfrican
You've come top the right place to find kindred spirits. I too have had a visit during a long haul flight. It's not fun, is it.

You don't say what meds you are on, or if you have your CH under control. If you feel you need help don't hesitate to let us know, or just come along to rant if you need to. We've all been there.
Maz

I'll be going to a San Jose Sharks hockey game soon.  I understand your Jumbotron concern.  This episode, most of my headaches are happening after midnight, so I hoping I'll be ok for the game...

maz wrote on Jan 9^th, 2015 at 10:07am:

I too have had a visit during a long haul flight. It's not fun, is it.

I've not had a CH whilst flying, but I've had a pretty severe migraine on a long haul flight, luckily it was whilst most people were asleep and I could kill it with a sumitriptan injection without attracting too much attention. It wasn't fun and I know a CH would have been much worse.

Hi Mike
It was before I was diagnosed and my doctor was still faffing around with paracetamol and ibuprofen. I took triple doses of both and 3 sleeping pills, but it was still the longest 13 hours of my life. I had back to back attacks with only half an hour between them.

By coincidence the lady sitting next to me was a maxillo facial surgeon who had been working with the flying doctors, and was on her way to england for a job interview (in cattle class paid for by the hospital). I was a great inconvenience to her but at least she had some idea of what was happening,although she couldn't help of course. She was very kind and understanding though. I was so doped up, slurred and staggering about, our taxi driver at this end must have thought I was drunk.

I've had attacks on every flight since, but only just before landing, so I think pressure changes may have had something to do with those.

It won't stop me travelling again though if I ever get the chance.
Maz.

Flying seems to be a bit like alcohol. For many it seems to be a sure fire trigger but for others it never is. I've had probably 120 flights whilst in cycle and probably 250 flights out of cycle, 95% short haul, with not a single CH in flight and only a single migraine (triggered by someone using nicotine gum nearby, one of my triggers).

I wonder if there is a correlation between alcohol not being a trigger and flying not being a trigger?

Maz wrote, I've had attacks on every flight since, but only just before landing, so I think pressure changes may have had something to do with those.

Having flown on many flights myself, long and short haul,
I've never experienced an attack, but from what I've
read it seems to be the landing and taking off are the
worst times for some, like alcohol, its a trigger for some,
but not for others.

Cheers Hoppy

No trouble with take offs and the actual landing is ok. It's about half an hour away from landing just as the pilot starts a slow descent.

Maz wrote, It's about half an hour away from landing just as the pilot starts a slow descent.

Yeah, that's what I meant, from there until you are
on terra firma.

Ive had many of these over the years, both in and out of cycle, and I call them landing headaches. Regardless how much they resemble a serious CH hit, though, I've never associated them with CH.

For starters there's only ever one and it begins on descent and ends on landing. I've even had mild ones while driving quickly down a mountain and this convinces me they're a separate thing entirely.

Oddly, I've never had one while skydiving.

I've also read some folk get hit whilst diving, so it could
be known as a pressure headache. A PH. that would give
the medical fraternity something to think about  [smiley=lolk.gif]

Hoppy.

AussieBrian wrote on Jan 9^th, 2015 at 11:22pm:

Ive had many of these over the years, both in and out of cycle, and I call them landing headaches. Regardless how much they resemble a serious CH hit, though, I've never associated them with CH. For starters there's only ever one and it begins on descent and ends on landing. I've even had mild ones while driving quickly down a mountain and this convinces me they're a separate thing entirely. Oddly, I've never had one while skydiving.

Brian, you just threw some of my theories about people who don't have alcohol as a trigger are fine with flying.

And the skydiving really confuses things as that throws out it being as simple as a rapid decrease in pressure, unless it needs multiple minutes of that compared to just a minute or two for most parachute jumps. This could tie in with the driving down a mountain too.

Oops, sorry Mike. I never meant to rain on your theories. I mean, there's enough water in the beer already without me crying into it.

I've simply known about these things forever and just cop it sweet because I know it'll be over as soon as we hit the the deck, but purely out of interest I just googled 'landing headaches' and it seems there as common as empty beer tins at an Aussie barbeque.

The symptoms truly resemble a dinkum Kip-8, but there's only one of 'em and it's over so quickly.

Otherwise, sorry to Perks as we've hijacked his thread a little, and a big g'day to our new friend from South Africa. (This sort of thing happens occasionally, fellas, but we mean well.)

I blame Hoppy and reckon he should buy beers all round,

Brian down under.

Sorry for the hijack, looks like its my shout.

[smiley=beer.gif] [smiley=beer.gif] [smiley=beer.gif] [smiley=beer.gif] [smiley=beer.gif] [smiley=beer.gif]  Cheers Hoppy.

Hoppy - re:  your comment about getting hit while driving.  I am in mid-cycle, fairly well controlled, but at Christmas the wife and I were driving the RV home to Maryland from Florida. I was exhausted, having had a bad night previously, and I was in serious danger of nodding off and running the rig off the road!  Just about the time my wife was ready to order me to pull over I got hit with a moderate (4 or 5) headache which sprang me back to alertness, and I was able to continue driving for some hours afterward.  My wife later commented that "Only God could find a good use for a Cluster Headache."

G'day Traveller, sounds a little bit like my life's history.

With the driving, it was diving I was commenting on,
but I've been attacked by the beast many times when I
was on the road as a sales rep, and i'm glad to hear you
and yours got home safe and sound.

Cheers, Hoppy.