Just spent 3 years of being treated for migraines, being told that "it was in my head" and that "nothing could hurt that bad".
Thousands upon thousands of dollars for CAT scans, MRIs,  useless medications and trips to the ER that was 45 minutes away.
I finally just quit going because nothing they did made the pain go away or even subside.
Finally, after my last CAT scan, the Radiologist asked me if anyone had mentioned CLUSTER HEADACHES?
Cluster Headache? Surly something so innocent sounding could not turn a 43 year old horse brakein, barbed wire chewing, tough as nails Cowboy into a head banging, clock watchin, foot stompin, crying, yelling, slobbering shell of a man? Cluster Headache?
Now if they called it "White hot boiling lava behind your left eye headache" I could buy that.
Cluster headache?... cluster of puppies running through a cluster of clover covered with the spring cluster dew..... it just did not sound painful enough.
No, none had mentioned that, but I will check it out. So I went home and Googled CH.
Wow there is really something called CH, hmm let me click on "symptoms".
I sat there looking at the CH website and cried.
For the first time my monster had a name, It was not going to kill me,  no it was not "in my head", yes it really could hurt that bad,  and I was not the only person this was happening to.
I was not alone... WOO HOO!
For the first time in a long time I almost felt good.
I printed out all the information that I could find, mailed and faxed it to all the Doctors that had misdiagnosed me. Not because I wanted to say "SEE A$$ HOLE, I TOLD YOU SO!!!! But because no one should have to suffer needlessly.
So now, when my monster comes to visit and I lay there in my floor crying,  slobbering and holding onto my pillow like a dejected 2 year old, I take solace in the fact that I know I am not dying, that IT will go away and that if every now and again, I have to "entertain" the demon, just maybe for that night, it will not visit one of my brothers or sisters out there.
I lay there and imagine in my mind each of you and your families sleeping so peacefully and comfortable. For me, with that thought in mind, the Monster does not win as hard as it may try.
If your new to this please remember, YOU are not dying, IT will go away and most importantly, YOU ARE NOT ALONE.
Rick

rick405 wrote on Oct 22^nd, 2008 at 9:17am:

I printed out all the information that I could find, mailed and faxed it to all the Doctors that had misdiagnosed me. Not because I wanted to say "SEE A$$ HOLE, I TOLD YOU SO!!!! But because no one should have to suffer needlessly.

Baloney!  You did so want to say, "SEE A$$ HOLE, I TOLD YOU SO!!!!"  ;D  Most all of us have been there/done that!

Great post, Rick - Welcome home!

Regards,
Jim

Rick,

Welcome to the site.  First things first, you need to get a good neuro.  There are many tools available to fight the beast, but without a proper diagnosis it's tough.  Also, click on the the link to the left about oxygen info.  A lifesaver for alot of us.  Sure does suck you had to find us, but it gets better from here on out.   Best of luck.

Regards,

Malcom

Awesome post Rick!  Welcome home son...

-Dennis-

Hi Rick!

Welcome home.  Many here have also had to diagnose themselves.  Learn all that you can and take that knowledge to a neuro.  Hopefully he will either be well informed on CH already or be willing to listen and learn.  

Until you are able to get to a neuro,  an energy drink at the onset of a HA is helpful to many of us.  Drink it at the first sign of a hit and drink it as fast as you can.  Make sure that it has caffeine and Taurine in it.  I use an Aldi brand called Red Thunder.  It is much more affordable than Red Bull.  I'm not sure if you have Aldi stores where you are.   Ice applied to the back of my neck, face and top of my head also helps.  Some use frozen peas while others find heat more helpful.

I'm glad you found us!

Jeannie

Hi Rick,

That was one WOW of a first post. You said some stuff I've thought but couldn't put into words...welcome aboard, glad to have you.

Hope you had a chance to thank that radiologist..I was diagnosed by a dentist myself, which is why we all need to heed...

"It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain".    Guiseppi

Best,

Jon

Hi Rick and welcome. Sorry you had to track us down but you are with a whole bunch of CH's now.
o2 is by far the #1 choice of an abortive amongst us. 100% with at least a 15 lpm regulator and a non-rebreather mask. Get on it at the very first sign of an on-coming hit. o2 has stopped most of my hits within minutes with no "hangover" effects after wards. I take 480mg Verapamil daily as a prevent which keeps this beast at bay for the most part.

I still get hits, and shadows almost daily but I have the weapons to fight and they work well for me.

Talk to your doc about getting the o2 and find a prevent that will work for you, and read all that is to your left and print off some of the info and show your doc.

Nice to meet you.

  Barry :)

Thanks for all the info from everyone. I have just moved to SC from OK. Hopefully the Dr.s here are more educated. I am looking for a good one.  The OUCH website list one Doc. here in SC but they are actually in NC, so the search continues.
At this point I am jaded when it comes to the "great healers". I think if  one more blows me off, I would come unhinged. I don't know how someone so educated in the medical field can be so ignorant when it comes to CH. Is this a new thing for them? Do they not think they are real? Is it geographical?
I just don't get it why they don't get it!
How many people get misdiagnosed and never have any resolution or answers.
How many people think they have a terminal neurological condition?
I remember laying there one night thinking "what would be easier on my parents..? them see me eaten alive with brain cancer or one well placed bullet?"
Even though I get angry because of what I have endured, I can not even begin to imagine what it must be like for a parent to have a child with CH... How helpless, frustrated and angry they must feel. My heart goes out to those people.
R

Welcome Aboard, Rick,

You have move to one of my very favorite cities, and I have seen many of them in this country!  How about going over to the Isle of Palms and have a scallop dinner for me.  Since moving back up here in Yankee country I can't find good seafood anywhere.  It really spoils you when you get it fresh from the boats.

In fairness to the Drs, CH is a rather rare disorder, and most Drs will never see it, let alone treat a case in their entire practice.

you have been given some excellent advice as far as O2.  Talk to your GP if you have to until you can find a good Neuro, preferably one who is experienced with HA's, or is at least willing to learn along with you.  Print out pertinant info and take it with you when you talk with your Dr, and don't leave without a prescription for oxygen.  Be sure you get a proper set up, (see the oxygen info button on the left), because it will do you no good if you don't get the proper flow rate and only pure oxygen without any outside air.

Until you can get the O2 setup pick up some energy drinks like Jeanie said.  WalMart sells RipIt for only $1 a can if Aldi is not convenient to you.  I know there are some down there, but don't know what part of the city you live in.

As questions come up, and they will, please don't be afraid or ashamed to ask.  You will be asking questions we have already asked, else we (at least I) wouldn't be able to answer. ;D  

Jerry

Welcome Rick,
    It's amazing how many of us were misdiagnosed with this.  I was in lmbo for about 10 years and got correctly diagnosed by the same neuro that missed it first time.  

cluster of puppies running through a cluster of clover covered with the spring cluster dew..... it just did not sound painful enough.

                              Thats funny ;D

    Hope you get some relief soon

                                   PFD's to ya
                                        JPC    

   

Thanks Jerry,

Yes I will go and have some seafood for you. Charleston is a great place. I live in the West Ashley area. I love it here, think it would be a great place for next CH convention.
Today I make my Dr.s appointment today with a Dr. Priviott Neuro. He is supposed to be CH friendly.
I have in hand the O2 info and how the script should read. Hopefully it will help, I have had these headaches constant for a year and a half with a remission period no more than 3 days, and that happens only every now and again. Not often enough but I am most CERTAINLY grateful and thankful for those days.
Let me know when you get to town and I will take you to a place that takes Prawns, stuffs them with blue cheese wraps them in bacon, then grills them....
Rick

south carolina is a nice clean pleasant place to live. glad you found us brother. hope you decide to stick around a while.

  Welcome to the maelstrom. Charlseton is a nice place if my memory serve. And you're not too far South of Chapel Hill and Chuck. Who knows all about O2, and gives freely of his vast knowledge on the subject.
[smiley=smokin.gif]

Quote:

I don't know how someone so educated in the medical field can be so ignorant when it comes to CH. Is this a new thing for them? Do they not think they are real? Is it geographical?

Besides the rarity of this condition,  the answer to your question came from a prominent Neurologist at one of our conventions.

"Doctors get exactly 5 hours of training in headaches in medical school.   ALL kinds of headaches..including Migraines, sinus etc"

Okay Rick, if we ever do a hall of fame for the greatest first post, yours has my vote!!!  ;D Damned sorry you had to find us but welcome home brother. 30 years with the beast and I actually have it somewhat under control. This is MY regimen, to give you an idea of what we mean by preventatives and abortives.

My cycle starts back up, I go on a 2 week prednisone taper, which blocks the attacks while my preventative medication, lithium, kicks in. I use 1200 mg a day of lithium while on cycle, blocks about 80% of my attacks, those are my preventative meds.

Okay an attack starts. I take an oral cafergot and start breathing my oxygen. Oxygen will beat it down within 6-10 minutes,cafergot will buy me up to 12 hours pain free time. For the ones the oxygen can't defeat I use injectable imitrex.

That's my routine, through trial and error,  WHILE WORKING IN PARTNERSHIP WITH YOUR DOCTOR, you need to find a preventative that works for you, and an abortive. We'll help you any way we can!

Guiseppi

Great post Rick!

I was happy when I was diagnosed for about .75 seconds untill I asked the question "what's the cure" and was given a long quiet stare from the nerologist.

O2 will get you up off the floor. ;)

Roland. :)

Rick,

I know everyone else has said it, but that was an awesome first post!! And you're darn right. You are NOT alone.

I think we all felt the same before finding this. I had considered going to see a shrink because I thought maybe I was making it all up and I had gone nuts!  :D

As Giuseppi said, work WITH your doc. Read on here and devour as much information as you can. There should be enough info here to help you find your silver bullet. It may not going to be the same as mine or anyone else who responded to your post, but you just have to keep trying until you find something that works.

My routine is taking 6mg of melatonin about 30 mins before bed. I use o2 to abort hits and energy drinks if I'm out on the road or having shadows (the throb - it's not a full head-banging attack, but just the beast tickling those nerves letting you know he's watching. My description may not be the best - someone help me out here!!).

I haven't fared very well with a lot meds, but this combo has helped me with about 90% of my hits. Like Giuseppi, there are others who have a really successful meds regime and they should be along soon!

Welcome to the fold Rick.

Em
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