This question could be for anyone, but it's based more on anyone who suffers from chronic pain......how do you do it?  It's been over 7 months now, and most of the time I'm okay.  This last month though I'm having a real problem just dealing with the pain all the time.  I'm seeing a counselor to help me deal with it, and starting a Pilates program at her recommendation.  I've got a great support system, but I feel so down some days, and feel so bad that my partner, kids, and friends see me suffer every day.

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.   :P
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  ;D  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

What meds are you using? Lithium often effective for chronic and some surgical procedures are coming on line for cases where medical control not effective.
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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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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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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  ;D) 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

Lithium has good press with many of our folks. I hope some of them will tell you of their experiences.

You may read storiess about side effects but with careful monitoring my sense is that most people would not give it up because of the relief they have obtained.

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  ;)

I realize that we are all different, but as a 13+ year chronic, I can only say that you learn to deal with it.

IF you allow it, CH's can and will totally dominate your existence and redefine who you are.

Without meaning to to sound flippant, you HAVE to make the decision that YOU won't let that happen. I know first hand what that means so I don't say it lightly.

Many of us could fill pages with horror stories of being hit with "real" K10's at the worst possible times. In addition, we could have in depth discussions about the dark and scary places a person begins to explore in their mind. But..... I continue to refuse to let it gain total control of me.

Sometimes it comes down to one minute at a time, but only you can make that choice.

Marc

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

I lived chronic for 17 years. If i got a break for 3 or 4 days it was heaven. My cycle never ended but it would grow and diminish throughout the year. At times I would go weeks getting 8-10 CH a day...but then when they dropped to 2 or3 a day what a relief if you can believe it.

Living in constant pain as we do is not easy. 1 thing I had to control was the fear of the next attack coming on. I know for me the anxiety of being away from home and my oxygen would often trigger an attack.

I would also really try and appreciate the pain free time I had...even tho it might only be a few hours and I was exhausted from battling the monster day and night.

When having an attack sometimes the thought of "I only have a half hour left and then Ill feel better" helped me. Most important part for me tho was always trying to keep a strong mental state and look at the positive. I would think to myself, at least I know most attack only last and hour and are not 10 hours long with no relief. So it could be worse.

For me the chronic pain was controlled to a point by mentally preparing myself. But of course I would have my times of depression and really feeling low.

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  ::) :D   No that doesn't mean my elevator doesn't reach the top floor...  ;)

I'm one of the lithium success stories. I'm episodic, 49, male, about 31 years of CH. I take lithium at 1200 mg a day while on cycle, blocks up to 70% of my attacks if I'm really strict with my triggers. Oxygen and the occasional imitrex jab beats down most of the rest.

My side effects are minimal, I pee a lot the first week or two, it is a salt. You get a little lethargy, nothing a cup of coffee or two doesn't eliminate. When you first start it, you have to do several blood tests while they establish your levels. After that it's a breeze. Been my life changer, praying it helps you as well.


Joe

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.

Marc wrote on Aug 12^th, 2009 at 6:11pm:

I realize that we are all different, but as a 13+ year chronic, I can only say that you learn to deal with it. IF you allow it, CH's can and will totally dominate your existence and redefine who you are. Without meaning to to sound flippant, you HAVE to make the decision that YOU won't let that happen. I know first hand what that means so I don't say it lightly. Many of us could fill pages with horror stories of being hit with "real" K10's at the worst possible times. In addition, we could have in depth discussions about the dark and scary places a person begins to explore in their mind. But..... I continue to refuse to let it gain total control of me. Sometimes it comes down to one minute at a time, but only you can make that choice. Marc

ITA, although it took me a couple years to come to that conclusion.  

Sounds like you are doing what you can to deal with it by going to your counselor and starting the pilates class.  

pf wishes to you

Beth

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!

"
Quote:

I use the O2 when the pain gets too bad and I need 5-15 minutes of relief (unfortunately it only works  for me when the mask is on, as soon as it's off the pains back)"

This is not the proper way to get relief from O2. Getting on the O2 as soon as you feel a hit coming is the most successful way to abort. It makes the difference for me and most others.

I noticed, in another post, that you may hesitate. Please try the O2 as soon as possible.

Also wanted to say 'Hi' to another Michigander.

Don

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 :P Shit happens... yould never see em again!

Being chronic isn't the end of the world - you just live between hits and quit worrying about it.

I'm with the O2 crowd... if you ain't tried it lately read the info on O2 and TRY it again with the new stuff that's come down the pike lately. The right lpm (at least 15-25) with the right mask makes all the difference in the world. I know!!! I've been using it for 10 or so years and this past year it finally started WORKING!!!

One question???? You said you go to the doc every two weeks... are they changing your meds that often? If so, is this really giving the meds time to work? I may have read that wrong, (I do that a lot), but if you're only staying on them for two weeks that's really not long enough to see if they're working or not (for most of them).

I use topamax as my prevent and have to regulate the dose (usually my maintenance dose is 100mg) up when I'm in a high cycle (like now). Depending on how bad I'm getting hit -how high I have to go. For a couple of years I had to stay on 300mg to get relief, but it was great. When the HA slowed down, I cut the dose and it works real well for me. Have been on it for about 10 or so years. Keeps me half way sane (shut up Chuck!).

Anyhow, we all have to find the right cocktail that works for us (and sometimes this takes a while) but eventually we find something that "helps". We're all waiting for the day we can say, "Hey, my damn HA is GONE!" Then we wake up.... ;)

Hugs BD :-*

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.