Hello and a big Thank You! to everyone on this site.
I have been getting CH headaches for over ten years now, but just got diagnosed with them yesterday.

Over the years, all the doctors that I have seen diagnosed me with seasonal allergies and put me on a regiment of constant antihistamines.
Every time a cycle came around, (about the same time every year),
I would go to the doctor, he would change my allergy medicine and the attacks would stop after a few days.
I was under the impression that the allergy drugs would stop working and that was the cause of everything.

I have been having what I now know were CH attacks for the past three days.
Yesterday I had one right after lunch.
I rarely have them that early in the day, but I had been so exhausted from attacks the pervious night, I fell asleep after lunch.
This is what I suppose triggered yesterdays attack.

After the very first attack, I contacted my allergist.
Well, my allergist was not able to work me into his schedule for a few days.
I even gave him a complete diary with all of my symptoms, pain index, environment, and time table.
Still nothing…
Finally after insisting, his office agreed to order a head CT at the local hospital yesterday.
While I was waiting for his office to call back with the appointment information, I fell asleep.
When I woke up with what I new was coming, I decided that I would rather have an attack in the ER than at my desk at work.

So, I drove myself to the ER and the CH attack started reaching its zenith just as I was parking.
(Pretty dumb move to drive myself, but I thought that I could make it before things got real bad.)
Sat in the ER waiting room rocking back and forth in a chair with my right eye and nostril pouring out fluid.
Unable to talk at this point, I went to the bathroom and blew my nose.
After a few minutes passed, I was between "waves" and decided to try and communicate with the ER staff.
I was able to say just a few words, "Sinus Headache" and handed them my driver's license.
It was pretty obvious that I was in bad shape and I then started sobbing uncontrollably. 

After about 15 minutes, which felt like 2 hours, my name was called and I went into one of the ER Triage rooms for further evaluation.
The triage nurse was sympathetic and said that she knew exactly how I felt since she was a migraine sufferer.
Right about then, my Wife came into the ER, found me, and was able to provide more information to the nurses for me.
Then the nurse sent me and my wife back out to the waiting room.

After about 20 minutes, I was on what I call "The good side of the attack" and the pain started to drop off dramatically.
Right about then, the nurse called us back and I got a bed.
Gave all my info / history to the nurse and the student EMT that was with her.
They left and a doctor came in about ten minutes later.

The doctor spoke with me for no more than ten minutes and then asked me if I had done any online research on my condition prior to coming in.
I looked and him with a perplexed look and responded, "no…" and asked why.
He said because I just recited nearly all of the symptoms for Cluster Headaches word for word!
At that point in time, he ordered a heat CT just to be on the safe side along with O2 + Saline IV.
After a few hours, my tests came back clear and I was released with a referral to a neurologist + an Rx for Verapamil.
Just knowing what my condition is was such a relief, but I still didn't know when this latest round of CH was going to go away.

Later on, the student EMT came back in and asked if he could get me anything.
I asked for some ice water and we got to talking.
It turns out that he has CH too!!!
He said that he didn't want to suggest that I may have that too since he was just a student, but he immediately knew what was going on when he saw my face.
How crazy is that?
After being misdiagnosed for years, two medical professionals correctly diagnosed me after no more than 5 minutes!
(By the way, my allergist's office has yet to call me back with that Head CT appointment...)


This morning I jumped online and did a ton of research.
That led me to O.U.C.H. and CH.com.
I'm so happy to know that I'm not alone…

Thank you!

Joe,

Thank you for taking the time to reply.

I just started the increased dosage of Verapamil last night.
It appears that the Verapamil may be working.
After two days of taking it, the attacks have decreased in intensity and duration.
That coupled with some of the other tricks that I have pickup on this site & O.U.C.H. have been priceless.
The Energy drink thing is SOOOOO effective!!!!

My first appointment with the neurologist isn't until May 9th…
Historically, my cycles have lasted no more than two weeks.
It is likely that my cycle will be over by the time I'm seen.
I have taken the O.U.C.H. Headache Diary sheets and am recording as much detail as possible.

Since my diagnosis, I have spent a bit of time online researching and reading as much material as I can.
I'm a bit freaked out by how text book my symptoms are.
(How the hell could I have possibly been misdiagnosed for so long!!!)
Reading posts of peoples experiences is also chilling.
All of these feelings and emotions that I thought were uniquely personal to me are everywhere on this forum.
That on to itself brings me quite a bit of comfort.

A few other personal details about myself:

In 1996, I was in a car accident that broke my pelvis in eight places and caused a plethora of other internal injuries.
I did not experience my first CH until a few years after that, but I can tell you that the pain of a CH attack is far greater than the pain that accompanied that accident.
When it is said that a CH is the greatest amount of pain that the human body can experience,
I can assure you if it isn't, I can not imagine anything else that could be greater.
The only difference of course being that a CH attack lasts for no more than two hours (for me anyway) and the pain caused by trauma lasts for weeks and months.

With this in mind, I thought that I had a pretty good understanding of pain levels.
When I had my first CH attack, I was dumfounded.
How in the world could a sinus headache brought on by allergies be this painful?
(I'm going to have a hard time getting over the TWO misdiagnosis…)
I then figured that I must not have a very good grip on pain levels if this "Headache" was able to take me down.

Because of the previous pelvic injuries, I have been seeing a pain management doctor for the past ten years or so.
This is to manage the daily "pain" that can occur due to my activity levels or the weather.
(I still consider myself to be young at 37 and refuse to let my injuries keep me from doing what I wish.)
Pain is in quotes since comparing the daily bone type pain to the pain of a CH attack is really quite silly.
Anyhow,  I told you that to tell you this.
My pain management regiment is an anti inflammatory called Mobic coupled with a pain reliever called Norco.
The Norco is taken as needed and I typically will take one in the morning and take more if necessary throughout the day.

Having dealt with pain so much in my life, I like to thing that I bring a unique perspective to the topic.
Narcotic pain relievers in general only work up to a certain pain level.
After that level, they just allow you to tolerate the pain.
I can still remember laying in intensive care and still feeling every bit of the pain even though I was being pumped full of the maximum allowable levels of Morphine & Demerol.
Throughout my CH episodes, since I have a prescription for pain medication anyway, I have tried to treat the attacks with them.
Of course this is a useless, as pretty much all pain relievers are for CH.
One thing I did find helpful.
I would chew up a Norco at the first twinge of a CH attack and it would reduce the intensity from a 10 down to a 9…
It cracks me up to learn how much more effective a freakin energy drink is over pain medicine!

Anyhow, that is more information that any of you probably cared to read.
With that in mind, I will end this post here.
Once again, thank you all for helping!

Anyhow, that is more information that any of you probably cared to read.
With that in mind, I will end this post here.
Once again, thank you all for helping!

Oh to the contrary! Hearing the unique stories of each individual on this board is one of this boards biggest strengths. Let us know how your neuro appointment goes. Get all the footwork done so when the next cycle starts, you can make a few phone calls and get set up with oxygen and your prevents.

Joe

Thanks for the tips Bob!
I found a Nerologist that specializes in headaches that is only an hour & 1/2 away.
Got lucky and they had a cancelation for this Wed.  
I wanted to try to be seen before my cycle is done and that appointment for the 9th would likely be outside of that window.

FWIW, my cycles are only about two weeks long and I typically will have a 11 - 24 month remission.
I honestly cannot imagine the torture of having Chronic CH.
Two weeks of KIP 10 CH attacks is terrible, but continuous.... 

Thanks for the extra info guys.
Unfortunately, I didn't get a chance to see in until after my appointment.

I had another hit the night before the appointment and then ghosting all day yesterday.
This sucked, but at least I knew for sure that I was "In Cycle" for my Neurology appointment.

Thanks for letting me know that Dr. Neil Pugach was a guest speaker at an O.U.C.H. event.
It is good to know that my doctor is part of our community.
He did recommend that I check out the O.U.C.H. site.
I told him that I had already checked it out and also told him the news of O.U.C.H. (US) closing its doors.

The appointment was thorough and I my diagnosis was confirmed.
He was very impressed that the ER Doc was able to identify my symptoms and diagnose the CH.
I'm very thankful for that ER Doctor and plan on doing everything that I can to let the hospital know how pleased I am.
(The ER Doctor's name is Kevin Taylor in case anyone wanted to know…)

Anyhow, I didn't really learn anything new at the appointment.
This site as well as the O.U.C.H. site did an outstanding job of educating me.
Since I am near the end of my current cycle, he decided that the use of any preventives would be futile.
He prescribed ALSUMA auto-injectors to abort any additional attacks.
I haven't has a chance to try them out, but just having something that is labeled "For Cluster Headaches" is peace of mind.

We came up with an action plan for the next CH cycle.
Keep Alsuma on hand to treat an attack, then contact his office to get an Rx for Prednisone called into my pharmacy.
That’s it…
Since my cycles are fairly short (2 weeks or less) and Verapamil takes two to three weeks to become effective, the Verapamil was removed as a treatment option.
He was dismissive of O2 treatments and said that his experiences has been that the O2 postpones the attacks and result in rebounds.
He told me that if the Alsuma worked, there would be no need of going through the expense and hassle of getting setup with 02.
He also had never heard of the whole energy drink thing.
I told him how effective it had been for me and he was surprised... 

Even though the Alsuma is pricey, I will end up still saving money on prescriptions.
He gave me coupons that limit the Copay for Alsuma to $4 and I'm now able to stop taking three other medications that I had been taking year round to prevent "Sinus / Allergy Headaches".

Thanks again to you all and I will update you as the saga continues.
(No hits last night and have had very few shadows today….)

Well, the Beast is Back!!!
Had a nice 18 month break fortunately.

This is my first cycle after being diagnosed though.
I got to implement the action plan that my Neurologist and I prepared.
The plan consisted of Alsuma injections as an abortive and then a course of dexamethasone steroid as soon as my doctor could call it in.

The Alsuma injectors worked like magic!
Beast be gone!!! (In 5 - 10 min anyway...)
Hear comes the fun little hiccups in our plan.
Alsuma is currently out of production until September 2015 and I only had four in hand.
My first attack in this new cycle happened on the eve of a monster snow storm that prevented the pharmacy from ordering in Imitrex
or me from picking up more samples from my doctor. 
Two days later and pharmacy was able to fill the dexamethasone and the Injector pack with two doses of Imitrex.
Unfortunately they did not have the refill Imitrex packs in yet and I got to hold my breath for another 24 hours.
Luckily for me, the dexamethasone started to work quicker than we expected.

As I continue first guided trip through Cluster Hell armed with a map & paddle, I thought that I would update this post for others to reference.
Being new to the Imitrex & dexamethasone, I am like most and figuring it out as I go.
Knowing when to use the Imitrex injector is nerve racking since I don't want to waste a dose, but also don't want to experience more torture than necessary.
This is complicated by the dexamethasone since it makes me feel as if I'm about to have an attack come on at any moment.

By feeling as if I have an attack ready to come on, I 'm describing that first dull ache behind your eye.
After which, I check the time and wait for the next wave which is typically in 5 minutes.
That first wave of undeniable pain is when I use the injector.

Hopefully the dexamethasone effects will evolve a bit and not leave me with this feeling of "Living on the Edge".
The anxiety of an eminent Cluster Headache is paralyzing.
If I know what to expect and know that the dexamethasone will keep the Demon at bay, I think that I can move past it easy enough though.
Unfortunately, its too early to know what is to come.

First lesson learned...
Stock pile Imitrex & Alsuma!
The expiration dates on them can almost be disregarded as long as they are properly stored...
My neurologist comforted me by offering me access to his stock of Alsuma samples that he has on hand.
At $150 each, that makes the cost of my doctor visits much more palatable...     
After that, leave no refill unfilled!
I need to make it a priority item on the budget even when I'm not in the middle of a cycle.
An unforeseen upside to Alsuma being out of production though is that my insurance copay for Imitrex is $10 compared to $267 for the Alsuma.

I would also like to thank this community for being a priceless resource to me.
Being armed with the information that I needed has been a life saver.
I apologize for not being active on this forum when my CH is not active.
Like others, I have inadvertently associated the site with my condition.
For that, I am truly sorry, please forgive me...

Wonderful that you have received good relief so quickly and easily.

But a footnote warning: twice you have mentioned your anxiety about what's coming. Trying to predict the future is a hopeless task and only serves to keep your anxiety aroused. Take a look:

PAIN VS. SUFFERING

Please, reader, do not approach this little essay as an alternative treatment or cure for CH! Nothing outlined here is a substitute for good, sound medical care and treatment.

AT THE HEART OF THESE PARAGRAPHS is the recognition that pain and suffering are rather different experiences which can and must be changed by rather different responses. The pain of our CH is the subject of many of the messages we exchange, the topic fills the medical literature we read, and is the primary purpose for the multiple visits to doctors.

Suffering is quite a different animal. It is an emotional/psychological condition which is often experienced even when there is no pain; it is commonly experienced as fear, anxiety, depression, hopelessness, dread, and fearful anticipation.

Suffering is a normal, even automatic, response to pain, loss (as in death, divorce, or other major losses), and a host of other difficult experiences. However, suffering can be intensified, sustained, and even created quite independently of any of these experiences. In the case of our CH, suffering is too often experienced when we are not having attacks.

The hard paradox is: WE CAN SUFFER EVEN WHEN WE ARE NOT IN PAIN!  This is the paradox which we need to resolve if CH is not to be the controlling experience in life.

As you read our messages about CH they fall into two broad categories: causes, prevention, and treatment; and, the subjective experience or emotional side of CH. 

A sample of the "experience" messages which we see are along the lines such as:

"Ch is horrible; it never stops!" (Or it will never end; or they will go on all my life, etc.)
"I can't bear the pain!"

" Nothing makes me feel better!" (Or no medication works; all have failed and so on.)

"It's not FAIR!" (Or variations along the lines of, "why is God doing this?", "am I being punished?")

"I feel so GUILTY!" --because of how I burden my family or can't work, etc.

"The WORST thing in my life!" (Or some variation on how CH is a catastrophe that I can't handle.)

(Before moving on, you may recognize this concept as the core of cognitive therapy or Rational Emotive Therapy. These therapies are rooted in the basic idea that how we think about an experience creates corresponding emotional reactions--for good or bad. The research on the effectiveness of this approach is very good; outcome research shows that it is an effective form of therapy for depression, anxiety, and addictions of various types.)

Cognitive therapies teach people to recognize:

A. These thoughts may be spontaneous and automatic but,
B. They are not rational thoughts, and so, in their very lack of reason they,
C. Stimulate emotions which are disruptive, distorting, and which intensify the difficult experience of CH and,
D. This style of non-rational thinking and the associated emotions tend to spill out (generalize) into our larger lives affecting relationships, our beliefs in how effective we are, how well we are able to run our own lives, and so on.

IF (and this is often difficult to both see and to accept!) we can begin to see HOW our thinking may not be fully rational and HOW these ways of thinking feed our SUFFERING--then it may be possible to change our thinking habits.

The next step--past a willingness to consider that we may be thinking  this way--is to learn how to dispute with ourselves, that is, how to argue that our own thinking is not reasonable, that it is self-harming. Then we learn how to change these thinking habits (with the goal in mind that by changing how I think about my experience will change how I feel, how my emotions affect me.)

(Understand that this is an outline of a fairly involved process. I'm just trying to quickly summarize how this method of self-help works. Sources of material are at then end.) So, let's go back to the sampling of expressions which we see in our messages about CH and see how cognitive psychology would deal with them.

1. "CH is horrible; it never stops!" First, recognize the despair and hopelessness which arises from this statement: where will this line of thinking take me? So, we learn to respond more rationally, i.e., "Yes, it's hard pain--but it has always stopped even when I don't treat it. I can survive this attack as I have every other one. I need to do what I know helps."  The long term effective of this change in thinking is to increase self-confidence and a sense capacity to benefit ourselves.

2. "I can't bear the pain!" Response: "I always have. I know pretty much what to expect; I've got some medication which helps. I can bear the pain because I always have!"  Notice, this is not a denial of the pain; it's not a "let's pretend". The goal is to deal with the reality of temporary pain; pain which, as bad as it is, has always stopped with our return to reasonable well being. It is the denial of this, our personal experience, which arouses suffering and despair.

3. "It's not FAIR!", or thoughts of GUILT, or that I'm being PUNISHED. Response:  "This is my body not working right; it has nothing to do with morality or sin or fairness. My job is to care for ME, NOW, not fret about fairness." (The consequence of  an appeal to "fairness" is that we become victims. The problem with "guilt" is that we have to find a "sin" which justifies having CH or we must convince ourselves that we have chosen CH to avoid something or to hurt someone, hence, our sin. In the end, this line of thinking is not reasonable or rational and serves to create more suffering.)

4. "CH is the WORST thing in my life!" I often see folks express in their messages a sense of anticipation, of feared expectation about the next attack of cycle. There are few responses which lend themselves to the development of suffering better than this one: waiting for pain; looking for the next sign; assuming that it will come. Reflect a moment on what the impact is on our emotional well being and you may begin to appreciate why changing thinking habits is of value.  How to respond?  "It is the worst experience--when it's occurring--then it's over and I return to my full life. My whole experience says that I'll come through the next  one--when and if it comes. I don't have to wait and look for it; there is living to be done, now."

If you are interested in exploring this way of altering your thinking habits there are three readily available sources of information:

1. Go to Amazon.Com and put "rational emotive therapy" in the book search box.

2. Go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and get the catalog. (This is the homebase for Dr. Albert Ellis, the founder of Rational Emotive Behavior Therapy.)

3. Look for a paperback, FEELING GOOD: THE NEW MOOD THERAPY, David Burns, M.D. While this title is written around the issue of depression, the general framework can be applied to coping with cluster headache.
  This is true for many of the titles you will find at #2; REBT and  Dr. Burns' cognitive restructuring approaches have been used for a wide variety of problems--the general framework is fairly universal, in this sense.