My name is Alicia.  I have been poking around this sight for about a year now.  CH season is right around the corner in our household and I'm shamelessly looking for some hands to hold through it.

My fiance's name is Mike.  He has always been prone to headaches, but just within the past 5 or so years (as long as we have been together-maybe he's allergic to me) he has started to experience these debilitating pains.  So far, his headaches occur episodically, always in the summer (July is prime-time), almost always occurring between 1-2am and increasing in frequency and intensity every year, with the exception of the one year he got a break.

When he first started getting them we referred to them as 'horcruxes' because we're big dorks and because Mike described the pain as being akin to having the dark Lord Voldemort from Harry Potter using his magic to curse an area on his face and skull.  After the first time getting one of these headaches, Mike went to his doctor (who by the end of this story we shall come to love and adore *sarcasm*), described his pain, and was promptly sent home with a bottle of Extra Strength Advil.  Lo and behold, this did nothing for the pain.  Our favourite doctor then sent poor Mike to the dentist because "it's probably a jaw joint thing".  The dentist was bewildered, as she had never seen a finer set of teeth or more perfect jaw in her life.  I would like to point out at this time that our beloved doc sent Mike to the dentist at least 2 more times...our love grows.

In year three, when the pain started becoming quite exceptional, Mike would vomit because the pain was so overwhelming.  It was at this time we started to do our own research and learn a bit about cluster headaches.  So here's poor Mike, at the doctors after a night of crying, and vomiting, and Advil, explaining once more precisely the predicament he was in.  The lovely doc in all his benevolence this time saw fit to prescribe T3s!  Those went untouched.  What's the point if you can't keep them down and even if you can they won't kick in until the pain is already gone?

Last year was the worst so far.  Much worse than the previous years.  We decided to forgo the trip to the friendly neighbourhood doctor and head straight to the ER.  This lead to appointments with an otolaryngologist because they thought it might be pressure caused by a deviated septum (spoiler: it's not), as well as to a neurologist...who we actually still haven't heard back from in 7 months.  After the barrage of tests and appointments, Mike met with doctor dearest who finally, FINALLY used that big brain with which he was blessed and said, "you know, I think this might be cluster headaches."  YES! YYYEEESSSSSSS!  We love you! I know we're not medical professionals in the slightest but THIS IS WHAT HE HAS!!!  Mike leapt for this bright shrapnel of hope, asking questions, inquiring about treatment, next steps, oxygen tanks, injections EVERYTHING!!  WE WILL DO ANYTHING DOC!!  This is what we have been trying to get someone to say for so long.  I present to you our Dr's response, without liberties or embellishment: "Well, oxygen tanks are really hard to get... and you're not getting the pain right now so come back next year.  Until then keep taking Advil."

And that's our story.  Mike is in a near romantic relationship with the maker's of Advil at this point.  Last year we tried melatonin as well as a daily dose of omega 3 and vitamin D.  We didn't discover the potential usefulness of these things until the end of his cycle so the jury is still out as to their effectiveness for him.  This year we plan to be ready.  Now that it's the end of May we intend to prepare for the worst but hope for the best.

I am wide awake on the living room couch with my customary anxiety.  The warmth of the air and way the light spills in the house this time of year, while all quite poetic, give me nothing but fear now.  I sit here ready to grab a cold cloth and a bucket for Mike and get the hell out of the way so that my shaky, anxious breathing doesn't make Mike feel guilty or stressed.

Summer used to be our favourite time of year,but now it just fills us with dread.

If you've made it this far in my long-winded story - thank you!  It's so comforting that there are others who we can reach out to who understand that this isn't just a headache.  We're tired of people scoffing at Mike when he has to take weeks off work, or can't go out for a drink at night.

If anyone has ANY suggestions on where to go from here, even the most seemingly obvious, we are ready to listen and learn.  Thank you again for taking the time to read this message.  I think even of no one does read it, it was at least helpful to get it off my chest

Hi Alicia,
Welcome to your new family - the clusterheads. You are not alone any more, and while none of us are doctors we are all experts in pain, especially the pain your poor Mike is going through.

Your story is typical, and for most of us it took years to get a correct diagnosis because this condition is rare, and most ordinary doctors and plenty of neurologists too, haven't got a clue about it. Every one of us is different so what works for some may not work for others but here is my advice.

Firstly, change your doctor. Yours sounds very much like the dozen or so that I saw before I found one with a few decent brain cells, who actually listened to me. She initially got my diagnosis wrong, but it did at least set me on the right path, and now she can't do enough to help me, although she openly admits that I know more about the condition than she does. There are many different conditions that can cause the pain Mike has,and they all respond differently to different meds, so you need to be referred to a headache specialist for a diagnosis, and he should also have an MRI scan just to rule out anything more sinister.

Secondly, stop using advil. Too many of these could be the cause of the vomiting and you don't want to add any extra discomfort if you can help it, or any long term stomach problems. There are no pain meds that will touch a CH, not even morphine. Pain meds work on the nerve endings, but with CH it's the nerve itself that is hurting - no nerve endings.
It's caused by a dilated blood vessel which presses against the nerve so what you need is a vasoconstrictor. These will shrink the blood vessel back to it's normal size, thus taking the pressure off the nerve. The best is Sumatriptan (better known as imigran or imitrex in some parts of the world). The tablets take too long to be absorbed into your body so are not really much help, but the injections are a Godsend and will abort the worst CH in 7 - 10 minutes. The only snag is that you can only use 2 per day, and if you have to pay for them the cost is often prohibitive. The trick is to stockpile a few while you are not in cycle so you will be well prepared.The only time pain meds such as advil are any use is maybe afterwards, when you feel like you're shell shocked. They may help to take away the aftershock - "hanger on" headache that you often end up with due to the stress of the CH.

Also a fantastic vasoconstrictor is oxygen, and it is NOT hard to get. You just need the right doctor, who is willing to prescribe it. You can use it as often as you like because of course it is not a drug. I use 02 at home and save the injections for when I'm out. I never leave home without them. But, THIS IS IMPORTANT, You must have a flow rate of at least 15 liters per minute (more is better if you can get it) and a non-rebreather mask.It won't be effective if you get either of those wrong.

Have a look at the thread "123 days pain free" by Batch, in the treatment and therapies board. It's a very long thread, so it may be better if you send a PM to batch and ask him about his D3 regime. He's a great guy and must spend all his waking hours helping people like Mike. He won't mind if you contact him, and he'll tell you all about it. It's quite complicated sometimes so he's the best one to explain it. There are hundreds of people who have followed his advice and become totally pain free.

Here's a little trick that may help. At the first sign of pain,(don't wait till it's ramped up) slug down a redbull, really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do. It doesn't work for every one but does for many, so well worth a try.

And lastly, don't tell people it's a headache. Tell them it's trigeminal autonomic cephalgia. That's the medical name for CH. Blind 'em with the science, and they won't scoff nearly so much. If you hunt around you will find an old thread called "dopiest responses". Should make you laugh.

So to recap:-
Good doctor, scan, oxygen, sumatriptan, D3 via Batch, and redbull.

And after all that, please feel free to come back any time and let us know how Mike is doing. We are always here and happy to listen if you just need to rant sometimes. We all do.

Hope this has helped a bit. Holding your hands from a distance........
Maz.

Just wanted to say my hello Alicia!  Big hugs!

Hi Alica.. Welcome to Clusterville..

The advice you've been given so far is good.. get Mike on the D3 REGIMEN .. check the link and do it RIGHT. And it's a full time thing - not just after the CH hits.. I've been PF for almost two years after getting on it and swear by it.

And CHANGE docs.. most of us have gone thru several before we found one with a "brain" that works.

Like someone told you - read the archives .. you'll be laughing your rear off at what some of us have gone thru.. But you're not alone - we're here and most of us have been right where Mike is .. and we've got big shoulders..

Keep us informed..