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        Cluster Headache Help and Support >> Getting to Know Ya >> Clusters are Back
        
(Message started by: GeorgiaPeach on Dec 19^th, 2007, 5:29am)

Title: Clusters are Back
Post by GeorgiaPeach on Dec 19^th, 2007, 5:29am

Hey Y'all!

It's been just over 1 year since my last attack. They usually come in the spring time, but they are back. My triggers are usually pressure and temp. changes and for those of you in Georgia you know the crazy weather we have been having. 75 degrees one week, 25 the next.

Anyway, the beast is back. And I am having one hell of a time staying positive. So I am here for help.

How do you all stay positive? How do you not fear going to bed when you KNOW one will hit? How do you function with the shadow?

How do you cope?

Title: Re: Clusters are Back
Post by Guiseppi on Dec 19^th, 2007, 10:14am

Well once you accept the fact they cannot be cured, you learn how to manage the little buggers!

Do you have a prevenatative strategy? A medication you take while you are on cycle to reduce how often you get hit and how intense the hits are? I use lithium others use topomax or verapamil.

Do you have an abortive strategy? You have a headache, now what? Your first line abortive should be oxygen. I can abort in less then 10 minutes using only 02. Must be at a high flow rate, up to 15 LPM, using a non re breather mask. Re breather masks and nsal canulas are worthless.

Other common abortives are imitrex injectables or nasal sprays and stadol nasal sprays. Many can abort by chugging energy drinks containing a combo of caffeine and taurine. Others use strong coffee for an abortive or to knock down shadows!

So pull up a seat, tell us your regimen and we'll try to help. Welcome back to the nut farm!

Guiseppi

And i should have added, since you get the nite time terrors try taking 12-18 mg of melatonin before you go to bed. An over the counter supplement at vitamin stores, stops the nite time hits for many!

Title: Re: Clusters are Back
Post by lorac on Dec 19^th, 2007, 1:38pm

all you can do is grin and bear it....I always try to remember ...there are always people who are worse off. believe it or don't.

A visit to any childrens hospital will do the trick!

Get your meds, and hunker down for the ride.

and TRY to have a happy christmas season. :)

lorac

Title: Re: Clusters are Back
Post by Linda_Howell on Dec 19^th, 2007, 1:51pm

http://www.ouch-us.org/chgeneral/painvsuffering.htm

Title: Re: Clusters are Back
Post by Sandy_C on Dec 19^th, 2007, 2:37pm

on 12/19/07 at 05:29:46, GeorgiaPeach wrote:

Hey Y'all!

How do you cope?

Everything that Guiseppi said is right on the money. Research it, print out articles, take everything to your doctor and plan an attack. Oxygen has been a Godsend to many of here as our first line of attack against a hit. It's cheap, it's effective, and there are no side effects.

Coping

1. CH will not kill you, you will not die because of it.

2. The hit will end.

3. You will have pain free times between hits, and hopefully, long pain free times between cycles.

4. Do not anticipate the next hit, or the next cycle, live for that PF time.

5. Do not be afraid of the next hit or cycle, for it will come.

6. Try to relax as much as possible during the hit. As impossible as that may be, do your best.

This should be your focus!

There is a life out there beyond CH. Focus on that and LIVE IT! So you're in cycle for a few days, weeks, or months, focus on those days, weeks and months that you are NOT in cycle.

When in cycle, refuse to live in fear. Go out to dinner, a movie, a party. Don't hibernate at home while in cycle, LIVE. If you get hit while out....so what, it will end. Be prepared with your prevents and abortives, do what you've gotta do, and get on with living.

This is how we cope.

Wishing you best of luck and many pain free days, weeks, months, and years.

Sandy

Title: Re: Clusters are Back
Post by Bitototty on Dec 19^th, 2007, 4:52pm

>:( mine recently came back too... i am gutted, worst time of year too!!! I've gone 14 months pain free.
Anyway this may sound daft but i noticed the beginning of an attack the other day and I had sex and the big O got rid of the attack!
anyway I dont know if it was a fluke but maybe you could try it?!!! good luck

Title: Re: Clusters are Back
Post by brewcrew on Dec 19^th, 2007, 5:52pm

on 12/19/07 at 16:52:15, Bitototty wrote:

Now if you can just convince your boy toy to follow you everywhere while you're in cycle.... ;;D

Title: Re: Clusters are Back
Post by GeorgiaPeach on Dec 19^th, 2007, 7:45pm

you guys are awesome! Just got through with a nasty bugger and your kind words are encouraging

It is also good that finally someone who understands that it is not 'just a headache'

I now I shouldn't but I do, I do live in fear. Fear of going to bed (because I know one is coming 2 hours later) fear of going out because I might get hit in a public place.

Seriously, if a doctor told me that all I had to do was cut off my right arm to end this cycle forever...bye bye arm!

Title: Re: Clusters are Back
Post by Miz_D on Dec 19^th, 2007, 9:16pm

Hi GeorgiaPeach,

Sorry you're having a hard time. I know exactly what you are talking about in regards to "fear of falling asleep" as do most clusterheads, and experienced an incredible level of it, especially the first year. What worked for me was hypnosis...not to try to minimize the pain or to "cure" the condition as I don't feel that that would work, but to help my mind and body not be so scared to fall asleep. Knowing that I need all the strength I have to deal with my CH (chronic), I couldn't deal with insomnia too. This has worked very well...I still think about the chance of attacks happening once I go to sleep but it never keeps me awake like it did. In truth, I have never slept so well in my life (when I am actually sleeping) as I have for the past 6 years. Don't know if it would work for everyone but it is something.

In regards to "How do I cope", I wrote about that in another thread on this same board...its cool because even though I am experiencing an intense amount of pain these days, I could still list 41 things that make me smile.. 8)

Sending you PF vibes

Danielle

Title: Re: Clusters are Back
Post by BarbaraD on Dec 29^th, 2007, 7:20am

Dear GP,

Once you "accept" there's nothing you can do about it - coping comes easier. I've been chronic since 97... and lead a "fairly" normal life (my family said I was nutz to begin with ;;D ). You accept that you're going to get hit occasionally (usually at inoportune times) and you STAY prepared (keep your meds with you at ALL times).

But NEVER let Mr. Demon WIN!!! We're tuffer than that. I keep Red Bull in my truck, I keep cafergot in my purse and if I get hit out in public, I go to the nearest place where water is available and down a cafergot - then out to my truck and down a Red Bull - wait a few minutes and rejoin the party (meeting or whatever). If I'm at home, I down a Red Bull (or coffee) along with O2 at the first sign of a HA and hope that works - if not I hit the cafergot.

I cannot stand to be touched if I'm up to a 5-6 (I may HURT anyone who touches me without thinking). I have a 6 year old grandson who has been taught NOT to touch Granny when she's having a headache. He waits until Granny smiles at him and then asks if Granny needs a "hug" now.

You take the PF times and enjoy them - the bad times you just cope with. You never anticipate the next HA - it just wastes the PF time and does no good at all.

I take melatonin at night and it's been successful in killing most of the night-time headaches. 12-15mg before bedtime. Helps with the daytime exhaustion.

You'll find out, most of us who are chronic, take the headaches in stride and just cope with them and go on about our business as usual (as much as we can). Episodics have their own coping methods.

Hugs BD

Title: Re: Clusters are Back
Post by outofcommission on Jan 15^th, 2008, 2:42am

i registered on this sight about 2 years ago when my ch was in remission. my cycle recently started up and have been on here researching and posting comments. this sight is the best way to keep me somewhat sane. i have found o2 and lots of water to be a good abortive. i take tylonol as a pm. sometimes nothing works but i have excepted that. remember not to take a bunch of pills at the peek of an attack. this does nothing. screaming and crying doesn't help much either but thats ok. lol .haven't gotten over the fear of going to bed yet. here it is 2:45 and i am here posting comments. the cold air here in ohio works as a good pm too. it's in the 20s here and i sleep with the windows in my bedroom open. also stack up my pillows with my head facing forward. yes sometimes you will do some crazy things to get by but you will get through this.

Title: Re: Clusters are Back
Post by imfareware on Jan 15^th, 2008, 12:46pm

Hello GP, try ice on it, not that it helps but its a way of taking your mind off it and concentrating on something else. Here in Buffalo the weathers in the 20's also, so a nice cool breeze helps. Remember, they wont last forever. Stay tough!