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?

First consideration is that your cluster is secondary to the tumor and so there is some interaction going on which is beyond our experience/knowledge. How much the "normal" rules of CH apply to you is up for grabs....

Especially with a new onset of cluster, the experience is often unstable, changing. Some of us have had wandering/changing experiences for several years before a stable picture develops.

Re. Zomig insurance coverage: your doc can write to the ins. and explain why greater monthly coverage is needed. Not an unusual experience with us. (Explore the OUCH site, left, for some material on this issue.)

If you can't get greater coverage, talk to the doc about trying Zyprexa (5mg) [olanzapine]. On a per dose cost basis it's cheaper than the triptans and has been highly effective for some of us. See:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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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

Hello Candi, how did your doctor visit go?

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?

P.S. I did go back to my gp today, who gave me Imitrex + an antihistamine that she said is used to prevent cluster headaches.  I can't remember what it's called right now; starts with a p, I think.

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 :-*

Thanks Barbara,
I have not seen a neurologist (pit tumors are more of an endo thing); maybe I should?  Things are basically under control right now with this Imitrex, which I'm liking much better than Zomig.  My headaches have a slow onset, but there is a sense of almost panic that sets in as it starts sometimes--I have a feeling there is some kind of physiology to this, because it's almost like an aura in that the anxiety itself seems to tell me it's coming on.

I had one cycle that increased in intensity for about 4 weeks, and then it left.  A few days later, I started another cycle, but this one is not predictable like the last one.  Of course, the headache I'm going into right now might be because I had a couple of beers after work?  I hear it is a trigger.  This is the first time that I've head eye drooping, redness, watering.  It's very odd to me, because much of the headache is gone, but I'm still having this minor "Horner Syndrome."

Thanks for the oxygen pushing. :)  I mentioned it to my dr, who said a neuro would need to prescribe it; maybe I should go see your neuro?  I wonder how far Longview is from Dallas?

:)