Hello everyone.  I'll introduce myself here and then maybe explain my current question(s) in a little more detail on a more appropriate board.  

I'm 29, and I live in Dallas. Due to a string of endocrine-related issues + labs, I recently had an MRI to check for a pituitary tumor (hormone regulator), which I do have.  Things "hormonally" have really intensified lately, so when I started having these headaches at the same time every day, I thought they were some sort of migraine triggered by hormones, perhaps related to our seratonin cycles throughout the day.  For about 3 or 4 weeks, I had gone to work, and then I would just go home because I knew a headache would be coming sometime around 5:30-6.  They seemed to be building in intensity to the point where , and I My dr said he thought it was cluster headaches.  To be honest, I did not believe it when I left.  My headaches certainly made it impossible to do anything else, but I knew what I had been experiencing had not been to the severity that I had heard.  

In researching, my husband and I then found several articles linking pituitary tumors to cluster headaches.  I also found that my headaches did fit the bill for cluster headaches except in that:  
-According your your Kip scale, the highest severity I've probably hit is a 7, maybe an 8.  (however, intensity was increasing...I'm wondering if some people have an onset that is slow? Or if some people just don't hit those high, high intensities?)
-I seem to have "shadows" almost all day, which linger in and out of a 4-5 stage, back to a 3ish.

Now here's the strange part (I'm sorry this is long!):
I got medicine (zomig/diclofenic/xanax for the accompanying anxiety).  I couldn't believe I was spending 20 dollars a day to keep these at bay.  I'm a teacher and my husband is a med student...Also, I am a complete zombie; it's like a new normal. Even with this, my husband and I were having conversations about what if I had to take a leave or get a job that didn't require the same kind of "being on my toes."  I hated even thinking of it, because I am a first grade teacher and it is a passion of mine.

When I called to refill the zomig (which had been my absolute saving grace, inspite of some side effects), they said my insurance had already given me what they'll give me for the 20 dollars a day price and that the new price would be 100 a day until the next month.

I had a moment of just grief; what would I do????  My husband and I then started reading more on this website about the other little home remedies...I chased a shadow away with water/caffeine, I'm pretty sure.

But then somehow last night, for the first time in 3 or 4 weeks, I didn't get my evening "big one."  I did not take any zomig, because I wanted to save it for big pain.  But the headache never came.  I could not believe it.  This morning, it is the same.  It is 9, and by now, I would probably have had something like a "4 or 5" on a kip scale...I guess a "heavy shadow?"  (Again, I'm wondering if that is normal to have predictable heavy shadows...)

I'm wondering:  Was that my "cycle" and it's over for awhile?  I seriously cannot believe I don't have a headache.  It feels like a miracle...Right when I had no idea what I was going to do.

(I'm thinking I should keep getting zomig refilled at 9 pills every 28 days to stock pile for the next time).

Sorry for the length!!


p.s. Now that they seem like they might be over, I do still have a very light "shadow" right now...and my eye has felt sore, like it's just been through a lot.  I'm wondering if it's from just being tense, and maybe I pushed on it too much? 

My neck is sore as well...Again, I'm wondering if it's from the tension?

Bob:

Wow, I cannot thank you enough.  I will take these notes to the dr with me tomorrow!  Thanks for the heads up on the other meds, too.  Believe me, I will check into each one.

I looked at the article.  I'll take it to my dr tomorrow, too.

Thanks again,
Candi

Thanks, Melissa.  The endo appointment was weird- she seemed to not want to touch the cluster headache issue, even though I had reported to her the published links between cluster headaches and pituitary tumors.  She did not act surprised at the link, but I felt I got the message that *this* wasn't her area.

I had an appoint with my GP, however, who gave me a prescript

Ironically, I am wondering if I am starting another cycle already...My last headache was Saturday.  Then today at around 3, I felt what I guess I would call a very strong shadow, this time on the other side, lots of instant congestion, etc; I would rate it a 5 on the Kip scale.  I chewed up some caffeine pills (not a big deal when you're in pain!) and drank a ton of water.  Eventually, I gave in and took one of my very last zomigs. It's pretty much gone now.

Just 4 days off of cycle?  Let's hope not, but who knows.  I'm trying not to complain too much, because I know that I'm not having as severe symptoms as many others are.  I do, however, have this sense that my life is just slipping away, though, in the sense that I'm not able to participate in life, work, family, etc. that way I did before.  I feel that it just instantly pulled me from my life in a lot of ways.

Does zomig make anyone else so, so, so tired?

You haven't mentioned O2.  That's a line of defense that most of us use to abort ... 25liter flow with an Op2tic (or whatever it's called - look on the ch.com store site for the mask - I alsways screw up the name). But it's cheaper than meds and works great for about 70% of us.  It's the STANDARD treatment now to abort - but doctors just don't seem to understand this.... You have to TELL them you want it and take the info to them as to HOW you want it RXed.

When the shadows are there - down a can of Red Bull and see if that helps - it does for me when I'm away from my O2.

Melatonin at night (6-15mg) will help with sleep and avoid the night hits (for a lot of us).

And welcome to Clusterville. Pull up a chair and read read read. We're a good bunch of people here and we're here to help ya. I live just down the road a piece - down at Red Hill. If you're ever down around Texarkana, drop in - my house is headache friendly and we welcome clusterheads (ask anyone -I'm totally serious).

Oh and if you have trouble with those neuro's in Dallas, let me know - I have a SUPER one in Longview and he's well worth the drive. I've been with him forever and he knows his Clusters.

Hugs BD