Hi Jesbri,

I think we are on the same track.    I too have been in cycle since Feb.  I had one other 3-wk cycle in Oct 08... but this is all rather new to me and I an trying to figure this all out myself.  I am also asking myself the same questions you pose.  
I do feel down some days.  The constant pain is a Pain In The HEAD!!!  well. was gonna say A$$$$$ but it really isn't    it's Much more than that.  I have migraines on top of the CH pain, and I know many others deal with dual-diagnoses and other health issues.
I have been building up a great support system, learning more and more about CH every day, about what I can try/ do next, etc.  There are So many things!  I keep in mind the things in Life that make me happy.  The beauty of the world that does not stop being there even when I am in pain.  I try to ignore the rest that I had time to deal with when I was not in pain, as I have no time for more cr@p in my life atm.  I am trying to balance things right now.  It is the biggest challenge I think I have ever been put up against.  I have always been up for a challenge, but WHEW!    HA
I know you will figure out what works for you just by what you say here - you are reaching out - family, support, counseling to help with depression, pilates - these are all things you are DOING to combat what would bring you down even more.  This is awesome!!

(Have you read the article pain Vs suffering by chance on the OUCH website?  I think it was worth a read...)
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Keep in touch here - I think it helps tremendously!!    

Val

Lithium is next on the list to try (according the doc).

So far I've tried: Topomax, Depakote, Verapamil, Prendisone (4xs), O2, Celexa, Buspar, Vitamin B & E, Imitrex Injections & now nasal spray, Morphine, Vicodin, and Norco.  I'm currently up to 1250 mg of Depakote and 240 mg of Verpamil.  I've been labeled and interesting patient....since I'm a woman, started with them in my 20's, nothing works, and I get migraines too boot.  I go every two weeks, and will be going back on Monday for them to do the change in meds again to try Lithium and whatever else they come up with next.  The doc I see is good, he was irritated with the last neuro and PA I see for not doing anything for the clusters, or not doing the right thing.

I'm normally an upbeat person, and when I start getting up the scale I will have friends/family notice it's coming before I even notice it (I'd suck at poker...too many tells  ) but this is kicking me.  I got hit bad Monday morning and other than when the drugs kick in have not had relief since.  I've gotta love my partner who comes home last night from work and tells me I look like crap, or my kids who tell me this morning I don't look any better..LOL

I did great on a cocktail of verapamil and lithium (chronics cocktail) but then developed toxicity and had to come off.


It's a good idea to get moving with the pilates and to keep on livin'.

remember it's just pain 

Live between the hits.  I know that sounds trite, but it is what you will learn to do over time.  Right now it is difficult getting a handle on everything, but trust me, after a while it is easier to remain chronic than to go episodic.  I experience some anxiety wehn I get pain free days just waiting for it to hit again. 

You said you were on O2.  How long ago, and at what level?  I just got the Op2timask and went up to 25lpm, and it started working for me again.  I know you have prob heard that before, ubt just wanted to suggest it again.

Look into Kudzu.  It's been working for me as well as Lithium and Verap together did.  doesn't kill them, ubt they are less intense.

Jerry

Been chronic for about 10 years, mostly I just try to remember that the pain is temporary and I have a life to get back to when the pain stops.  In other words I don't let the pain control how I live the rest of my life, with exception of removing triggers from my diet and daily activity.

One of my favorite sayings may help, I use it like a mantra sometimes LOL

"The Glass is half full not half empty"  But then I'm just a glass half full kind girl     No that doesn't mean my elevator doesn't reach the top floor...  

Well, my suggestion would be counselling, but it looks like you're already seeking that. They'll help teach you methods to cope, and help you deal with the stress of this all.

Honestly, I have no memories where I was not in some form of physical pain. (Unless I was in the hospital getting medication for said pain.) It becomes normal, and routine.

CH is something you can deal with, and fight, and we have a LOT of things you can use to fight it. 02, preventatives, clusterbusting. You might be in pain, but that pain will eventually subside and you can go back to doing whatever it was you had planned to before the hit.

Out of it due to medication from surgery, I hope this made sense.

Here are my suggestions:

1.  Read anything Bob Johnson posts.
2.  When you tried O2, what flow rate and what mask did you use?  There have been many who didnt use enough or an inferior mask.
3.  Have you tried Maxalt MLT (dissolves in mouth).  For whatever reason I had more success with it than imitrex.
4.  Have you ever tried caffeine and taurine energy drinks?
5.  Lithium is an excellent next step
6.  Is the dose of verapomil high enough? 
7.  Keep asking questions and posting what you have done.... it is a good way for people here to be able to give more ideas.
8.  Have you tried a frozen package of peas in various places above the shoulders?
9.  Are you sick of people with a ton of ideas who number them in a long a list so you almost HAVE to read them.

10  Do everything you can in your life that you want to do.  Don;t let the beast take anything from you that you can keep for yourself!

Its been 9 years off and on. Im new here so cant speak with the authority of some, but all I can say is deal with it the best you can.

Theres no point fooking around with the truth... its going to happen unless your doc/you mange to find the reason they occur in the first place.

Learn the signals when they are starting and take pain killers or whatever the doc has provided. Hopefully that will stop the nastiness. IMO you ALWAYS need to take pain killers when you feel them coming. Even if your not sure. Better safe than sorry.

Whatever happens you can still have a productive life....

Be honest with your friends/family/collegues about it and they will try understand. They cant, but they will try.

And put up with looking like a loonatic going home from work on the train grabbing the side of your head and fidgeting like a serial killer Shit happens... yould never see em again!

Lot's to respond to...LOL

I'm off the verapmil, it caused my ankles and feet to swell up pretty bad.  I do see the doc every two weeks and he doesn't take me off meds but does keep uping them each time I go in, or introduces another med.  I started the Lithium last week and increased it this week and will do so again next week.  I take 3000 mg of Depakote now daily as well.  I can't take Topamax, it gave me severe tremors.

As to O2 I may need to look into a different mask.  I use the 10 ml, I think.....whatever was listed on here as the best to use.  It worked for a short while, but I'm becoming immune to everything.  The O2 doesn't work, Imetrex does still work when I can get it from the insurance company, I use both nasal and injections.

Since I went off the verapamil my migraines are back as well.  I hide in the dark and try to sleep through those to be woken up by a ch.  I take narcotics for the pain when my pain level hits 87-10, which is about 1-2xs daily, and now those aren't working as well either. 

I keep track of them, and average 4-9 attacks a day, if I only have 2 it's a good day.