Hi everyone...here's my story.  I'm afraid it might be a rather long post, I hope you can bear with me.  This all started on May 3rd, 2008, I was 37 years old...a single mom, with 3 small kids (9,7,4) and a (most of the time ;))  wonderful boyfriend with twin boys (7), a great job, completely "health conscious" and training to do my first triathalon.  I woke up that morning (May 3rd) and I felt "off", my head ached right on my left temple, very localized.  I have NEVER been a headachey kind of person so I thought it was strange.  About 1 p.m. that afternoon, I felt like a MAC truck slammed into me, I didn't know what to do with my head the pain was so bad.  I took some ibuprofen, which I next to never do, which did nothing,  held an ice pack to my head...the pain let up after about 90 minutes...only to keep coming again...and again.  By the next morning, we were in the ER.  They sent me in for a CAT scan...normal, sent me home with an arsenal of drugs (as you get to know me, you will know I am a doc's worst nightmare when it comes to meds, I'm not compliant at all, especially when they are trying to give me something to just mask pain...I believe, I must be in pain for a reason and let's treat the reason not the pain...of course, that is what makes this condition so hard).  Anyhow, they concluded that I was having a tension headache.  I didn't know alot about headaches at that time so I just went home.  The pain continued...luckily the ER nurse who knew me, because I work at the local HS her son attends, called her ex who is our local neurologist.  A few days later I was in that office...I was then sent in for an MRI and MRA, suspected pituitary tumor...results negative.  Only enlarged pituitary.  Then another call from neuro that something looked funny about an artery...sent in for a CT Angiogram (not pleasant by the way), seems my left vertebral artery is occluded but apparently that can not be the cause of the pain says the doc.  Anyway, still in pain.  Doc puts me on tramadol....does not a thing but make me sick and dizzy and STILL in pain.  More visits to local neuro prove fruitless, he doesn't know what this is...puts me on indomethacin (24 hour release), didn't do much but tear my tummy up.  
I was then referred to to UCSF...Dr. Goadsby.  He actually rubbed me the wrong way AT FIRST, I was trying to tell him what I was feelin, but I think I was being to ellaborate and he just wanted the facts, so he kept stopping me from talking.  (if you've read this far, you're probably thinking that is not all that shocking :)) Turns out, he thought something might actually be amiss with my pituitary and my new symptom of my loss of peripheal vision didnt' set well with him.  He refered me to the pit specialist at UCSF and said I should have  a formal testing of my visual fields.  

It's now November, my pituitary is functioning normally.  I do have something going on with my retro-bulbillar pre-chiasm optic something or other.  I have been referred to the neuro-opthamologist at UCSF, I go back on Dec. 4th.

All I know is that this pain has not stopped.  I have had a couple of week or so breaks but since September 10 I have not had one break.  Every day, it's here.  Sometimes it only lasts 20 minutes sometimes upwards of 2 hours.  Anwhere from 3-11 times a day. I told my mom that the only way I could describe it would be if someone cut into your temple, peeled away the skin then stuck an ice cube in there and sewed you back up and you had to just endure it all till the ice cube melted...like that freezing hot/cold kind of feeling...I feel there is no getting away from the pain.  Like a poor dog trying desperately to shake off fleas... just no getting away from it.

So...Dr. Goadsby says that if the neuro-opth. can't find anything we are going to treat this as Trigimenal Autonomic Cephalgia...cluster headache...I researched that and this is how I found all of you.  I have to say that I do almost with there was a tumor in my head that they could just pull out.  And then I would be better.  My whole entire world is upside down, I have lost so much...all the things that made me happy, running, cycling (exercise is a trigger), seeing momma in pain scares my kids, my relationship is suffering because I feel like sometimes he just doesn't get it and I want to rip his eyeball out so maybe he will get it (just dramatizing but you know!), my job...they made me go out on medical leave till this gets figured out.

I'm a mess.  I was picking up my little guy from preschool the other day, and *it* smacked me, the pain took my breath away, if it werent' for my 4 year old in the back seat I think I would have just run my car into the logging truck coming the other way.  I just want this pain to go away.

Welcome Katjac.
   
    You have difinately com to the right place.  I'm sure there will be gangs of info to follow.

    Read and print out all you can to go over with your neuro.  Sounds like one of them has a clue.  Most neuros are not up to speed with cluster headaches.

    Click on the "oxygen info" on the left of you screen and also check out the "OUCH website".  Oxygen is a life saver for many of us here.  Make sure you talk to you neuro about it.

    There are tons of meds to treat this but with side effects.  Judging by you post you may not like that, but it is what it is.

     Hope you get some relief soon.

                                                 Good Luck
                                                        JPC
     

 Welcome Kat,  Sorry you have to be here but this place has helped many people.  Now that you have the diagnosis of ch dont let it scare you,  many people have gone years without a proper dx so you are ahead of the game.  Did your doc put you on any meds when you were diagnosed?  There are tons of different types of meds for ch you just have to try them preventives like Verapamil to start and abortives like oxygen and Imitrex,  these meds have help alot of clusterheads.  Some people choose not to take any meds for different reasons but I personally need my meds or I would got nuts :D.  
  So let us know what meds your on and maybe we can help,  If you choose not to take any meds we will be here for support.
 Good luck and pf wishes,   Phil 8-)

Hi Kat,

Sorry you are in so much pain.  I know what you mean about wishing that you had a tumor that could be removed.  I have often wished that my whole head would come off!

Read as much as you can.  02 is the first choice abortive around here.   There is great info on the left of your screen about it.   Also, at the first sign of an attack, drink an energy drink.  Some find that it helps.  It must have caffeine and Taurine in it.  Rock Star or Red Bull are two that are often used.  I use the off brand that Aldi sells.  It is called Red thunder and is much less expensive.  They all taste bad to me so it makes no difference as far as I'm concerned.   Strong coffee also helps many.  

During a hit I find that putting ice on the back of my neck helps shorten the duration of a HA.  I also alternate between my face and the top of my head.

I think that it is a good thing that Dr. Goadsby is ruling out other things besides CH.  If you do end up with a Dx of CH there are many methods that have helped a lot of us.  

Hang in there!  I'm a Mom too and I know how hard it is to endure this while trying to be there for your kids!  Feel free to PM me if you need to talk.

Jeannie

I don't think you know how lucky you are to be treated by our God, Dr Goadsby!  He is world recognized as being the most knowledgeable doctor, in the WHOLE WORLD, on cluster headaches!

I am sorry he rubbed you the wrong way, at first, but PLEASE listen and follow his instructions!  that man KNOWS what he is talking about, when it comes to these headaches!

Good luck, and keep us informed!

Chuck

Hello again and thank you for your responses!

Chuck...I have been doing a ton of reading up on CH and believe me, I sure do know how lucky I am.  I have, since my first meeting with Dr. Goadsby, taken quite a liking towards him.  Not only have I learned thru research that he is extremely skilled, smart and talented but thru first hand experience I have learned that he is incredibly compassionate and attentive.  Really an extraordinary man.

I can't believe you got to see THE MAN that quickly.  It took 12 years for me to get a diagnosis.  I know you don't feel lucky right now but please know that you are.

Why don't you tell us a bit about what treatments he has you started on and how they are working out.  Maybe we can help you get the most of them.

You can have a life with clusters.  I have 10 kids and work full time.  I'm episodic and have two 12 week cycles a year.  When the beast comes knocking I kill him quick and get back to living my life.

Once you find the magic combination that works for you, you will too.  Just wait and see.

In the mean time, welcome to your new 2nd home.  

Now for your homework...  It sounds like you've already done a bunch of reading but why don't you sink your teeth into these  8-)

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Now for the unconventional stuff...

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There are also assorted OTC herbal mixes that folks have had success with too.  Search for the kilowatt3 thread on the meds page for details.

Let us know how you make out.  I hope you find some PF (that's pain free) time soon...

-Dennis-

Dr. Goadsby hasn't started any treatment for me yet, because he needed to rule out some other things first.  He had concerns about my pituitary, which checked out normal, but I am still having an issue with the vision in my right eye (but my pain is on my left side so that is odd).  I saw Dr. Goadsby on the 18th of September, all the time since we have been ruling out things and I go back on the 3rd (of Dec.) to see the neuro-opthomologist at UCSF and then him on the 4th.  In all of our communications, he always lets me know that he knows this is very difficult but it's some important to have all of the other docs input.

I really appreciated the fact that he didn't just prescribe a bunch of meds without checking into everything first.  He's being very thorough.