Oh Val, I'm sorry you're feeling so down right now, but you know what?  This trip to St. Louis is going to be a wake-up call for you in regard to being chronic, if that's what you are.   Please trust me on this.  You're going to be around other chronics and be able to talk to us, let us tell you how we cope, etc.   And you're going to see people get hit.   There will be plenty of 02 there for you. 

I have no problem having a glass of wine or a drink and many many other chronics report the same exact thing.    Alcohol is not a trigger for me.  but It would seem that episodics cannot and do not drink as this IS  a trigger for them.  For chronics something else is going on in the brain, so you may very well be able to go to Napa and enjoy some wine-tasting.


Chin up girl and just make sure your abortives are with you on the plane.   Go into those little-bitty bathrooms if you do get hit,  away from others. 

Do NOT for one second forget that we clusterheads are an amazingly strong bunch and you are too.   

Val,

I've been chronic for a long time.  There are times when I can't deal with it, and there are times when I can't believe my wife deals with it.  I wish it would stop, but every day of my life I get slammed by the beast, and every day I get back up again and do it again.  I'll admit I was depressed about it long ago, but I'm past that.  Now, I have come to realize realize this problem is no more significant than the myriad problems I see other people having.  Being depressed about it doesn't help me or my wife & kids either.

I've read some of your posts, and I know you're no stranger to this, but don't let the 'chronic' diagnosis get you down.  It's not a life sentence.  Even now, I manage to squeak out quite a lot of good moments in  between the headaches, so I'm winning.  You can too.

-Shawn

p.s. I'm local (Bay Area).  Let me know if you want to meet up for coffee or lunch.  It would be cool to meet another bay area clusterhead.

Me - I'm episodic -- I'm just having a long episode (it started in 97 and is going to end any day now! ).

Seriously, what Linda said about St. Louis. A lot of us didn't like the idea of being chronic, and still don't, but ya get used to it and it just becomes a part of you and your life and you deal with it like everything else.

Look me up in St. Louis and I'll buy you a cup of coffee (alcohol isn't a trigger for me, but I just drink a lot of coffee  ).

See ya in a few weeks.

Hugs BD

Thanks all,

I was just really having a time of it yesterday.  I had an appt Mon w/ my GP telling me how many meds I'm on for someone my age is crazy like I asked for them (it's up around 20 pills total including supplements Every day  ) Then yesterday I had Another lithium draw... poked and prodded, with no relief atm.  Heads been crazy again for the last week or three.  Shouldn't have changed lithium amt...   
So my issues yesterday weren't so much about the wine and alcohol, but yes they are still a trigger for me, and a drink would have been nice. As for what you said Linda - Quote:
 well my MRIs showed 'negative brain' so I'm not sure there is one in there these days     Just know my head hates me  

Anyway, I do enjoy things despite, and I am looking forward to meeting you all, talking through some of this!!    Thanks for the words of encouragement.  You are the only people that understand... I came back from my trip the other day and was telling family about the trip.  They asked so I told them the airplane trip out was awful, and that the trip back wasn't as bad but my head wasn't behaving a good part of the week... my g-pa says 'glad your head is better honey' as I leave for the night.    Go figure?  They think what they need to??  

Anyway, feeling a bit better today!!  As I said, I knew I would get over it, but putting it out there and getting your responses helped tons!!  Just trying to wrap my head around the implications of all this.
With my migraines I had menopause to look forward to, as most women get rid of 'em... many people told me that's a ways off, but at least it is a date to see ahead.    With CH there are so many unknowns - Brew, Chuck, going episodic to chronic (some back and forth) - the uncertainty is enough to drive one MAD!!!    I think though at this point I would rather have a break even if I didn't know when I'd be hit next or if it were a bit worse.  Just my opinion Jerry.    Maybe in a couple of years I'd feel a bit different.  HA




Val

hi,
I had the similar realization you did...the sorta oh no, that's not me, I can't get used to it being that long...when the doctor at Jefferson first said that my CH were chronic.  For me, it was chronic from the onset, and it was just barely a year then, but he said it was chronic because of the patterns as well..anyway once that doctor said it...someone with a similar weight to Dr. Goadsby..it hit me hard enough like it was taking my breath away.
I remember one of the first things I did was come home to my computer and get on AIM and send Paul a message about my "chronicicity"
His response?  "yeah Lisa...I knew it two weeks after I met you." 
My point...fellow CHers are sometimes...usually..better than doctors.  This month is three years exactly with chronic CH, and although there have been good days and bad days, it hasn't totally given up. 
Meeting with other CHers is the best thing in the world, all of them get it, chronic or not.  It's still the same thing. There are parts of dealing with this from an episodic standpoint that are worse, I think, because some tend to be hit harder for a shorter time and have everything totally out of order for a while, leaving friends, coworkers, family confused. 
The thing when you meet your chronic buddies is that they get the daily hassle a little bit more, and there is a greater chance that they will see you get hit (and you will see them get hit.)  If that happens, though, the o2 will just be a little bit closer..if you are a bit scattery like me...and you will just have one more hand to hold...if you like a hand to hold like I do. 
Just remember you have a wonderful support network here..no one has let me down yet.   
Lisa

When I posted this thread I was getting hammered with CH and was on the second day of a 4-day migraine on top of it. with clusters present for the most part I don't get migranes.  It has been different lately - like everything is changing with my CH also... not just my ability to live my life as I wish.  I had to drop my classes.  I had to postpone my graduation.  OK.  I thought as soon as I had a break in these HAs I could spend some major time on papers... Yeah.  
In addition to little things like flying, having a drink in times like the other day when I could really use one (a trigger for me yet), how about concentrating in classes or throughout any day or three in a row at work?  I'm just feeling lost in the implications still.  I couldn't make it through the days working past Mon morning with the migraines on top of the CH. I lost almost a week.  I am one to push on always and have done so many times in my life.  I will continue to do so.  The clarity with which I see how right now is the shaky part, and will clear up with time I am sure.  
Meanwhile, you all should have a drink for ME!  
Val