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        New Message Board Archives >> Jul-Sep 2003 >> make it stop
        
(Message started by: hootchdom on Aug 16^th, 2003, 11:44pm)

Title: make it stop
Post by hootchdom on Aug 16^th, 2003, 11:44pm

FUUUUUUCK this beast !!!!!.......sorry guys i'm sure you don't need to hear it agaiiiiiiiiiiiiiiiiiin, but i have to vent.

I've been keeping track of my life every 15 mins for the last five days. This is the fucking hell i've been ravaged by.

5 days, 120 hours...30 headaches.....19.8 hours of sleep........75.8 hours kIP 4 or greater (my headaches start as a shadow and build to 6-8, which takes about two hours and subside to shadow another two hours)........18.4 hours with a shadow.......6 hours PF, 6 fucking pain free hours in 5 days.

The neurologist will see me in september. GP has tried pred, lithium, verap, maxalt, replax, imitrex nasal and doesn't know what else she can do. Oh yea, she will get some o2 lined up for next week. NEXT WEEK is a fucking eternity.

How do you chronics stand it? How does anyone stand it?

Title: Re: make it stop
Post by ClusterChuck on Aug 17^th, 2003, 12:50am

We stand it just the way you do. Scream, Holler, Yell, Dance, Bang your head, Cuss, Cry, and anything else that will get you thru it.

And then the blessed releif when it goes away!!! Is there any sweeter feeling than the one when you realize it is going or gone!

Of course then you start thinking and dreading the next one. And you start all over again.

I say I don't live my life as one day at a time, I do it one hour at a time, which is about my cycle right now. One hour pain free, then an hour or so of intense pain, and then start again.

This is the way I have been living for the past three weeks. I am cronic, so they never go away, but I am looking forward to when they slow back down again.

So this is my life. I have been doing this for over 20 years, cronic for 6 years. We bear it. Just as you are and will continue to do. You CAN do it. You already have. Eventually, you are lucky as an eposodic, the beast will hybernate. Then life is beautiful! The music plays! Life is worth living!

My heart goes out to you, but you will live thru this. You are not alone! Come here to cry, vent, or what ever. Someone (or I should say many) will come back at you. You are not alone!

I am throwing good vibes to ya! Kick that beast's ASS! Prove what you are made of!

Keep us posted.

Chuck

Title: Re: make it stop
Post by Patrick_A on Aug 17^th, 2003, 12:58am

Oh man, I feel your pain bro! The last 4 weeks for me have been a total nightmare, but last week my Neuro put me on Prednisone and Verapamil. It is just now starting to kick in, I think! I havent had a CH all day, but its there, It just cant kick in! But my head feels like a fugging balloon blown up tight! But i can live with it till monday when i talk to my Neuro again. I don't know how much Prednisone or Verapamil your Doctor put you on, but mine is pretty damn heavy at the moment! Maybe ya need to get ur Dosage adjusted.

Chuck bro, I just plain feel for you my brother. Your heart condition makes it hard for them Neuros to experiment. As you probably well know, Nitro is as bad a trigger as Alcohol. You might ought to elect for the treatment that "2late" is trying Monday. I think its DHE or sumptin like that. Ask "2late", he might can give some info on that. I hope you find some kind of relief bro!

PFDAN, Patrick

Title: Re: make it stop
Post by Georgia on Aug 17^th, 2003, 1:37am

Oh god. I am so sorry. If there was a way to make it stop for you, I swear I would.

There is something out there that can help you manage this pain...it is just a matter of finding it. This is the place to do it. There is more information, help, support, and love at this site than anywhere else in the world for CH. Start reading.

Call your dr on Monday, tell him you can not wait until September. If he can not see you, ask him to call in a script for Imitrex injections. They work MUCH better than the nasal spray, and much faster.

The meds that you have already tried....tell us how long you took them, alone or in combos, and a t what dosage. The more we know, the more we will be able to help you.

Check out the links on the left. Research the meds. Be prapared when you do see your dr.

And know that you are not alone in this. Ever. You just found yourself hundreds, thousands of warriors to fight along side you. Keep fighting....we are with you now.

And one last thing....there is never a need to apologize for "venting" here. Not ever.

Peace, love, and pain free days and nights coming atcha,
Georgia

Title: Re: make it stop
Post by Prense on Aug 17^th, 2003, 8:54am

on 08/16/03 at 23:44:12, hootchdom wrote:

How do you chronics stand it?

How can I not? There is way too much going on in my life to be owned by the beast. Make the BEST out of every PF moment you get, and always look forward to the next one. Hang in there....you will have good days and you will have bad days. Try not to dwell on the bad ones and live for the good ones.

Chris

Title: Re: make it stop
Post by tommy_walton on Aug 17^th, 2003, 9:03am

i'm new here and i know how you feel, ive researched every type of headache and here i am. cluster headaches, i didn't give it much thought until recently. I need to be diagnosed or shot. i can't stant this shit much longer

Title: Re: make it stop
Post by taraann on Aug 17^th, 2003, 10:03am

Hang in there guys! KEEP ON PUSHING through! You can do it!

Title: Re: make it stop
Post by Jackie on Aug 17^th, 2003, 10:46am

Hoot...
Clusters are a son of a bitch.....no two ways about it. >:(
Clusterheads are the toughest people on earth.....you can do this. Remember it DOES get better.
This bunch here will help hold you up.

Bless your heart & good luck

Jacks 8)

Title: Re: make it stop
Post by goaway on Aug 17^th, 2003, 4:28pm

Quote:

Scream, Holler, Yell, Dance, Bang your head, Cuss, Cry, and anything else that will get you thru it.

Wow, I mean like....you guys too?

Sorry to hootchdom. Hang in there. It WILL get better. (Well, won't it? I mean eventually? You know, like later?)

Title: Re: make it stop
Post by zanychef on Aug 17^th, 2003, 5:01pm

been chronic 8yrs now and i'm still alive (if a bit battered) so keep going guys i got a bottle of beer in the fridge waiting for a pf day ;D gonna be one soon ;D ;Dfell it coz i getting some good vibes here ;D 8)

Title: Re: make it stop
Post by STABBINGPAIN on Aug 17^th, 2003, 5:30pm

I HOPE YOU FEEL BETTER. I KNOW HOW YOU FEEL! HANG IN THERE.

Title: Re: make it stop
Post by murazzio on Aug 18^th, 2003, 5:42am

Hootchdom,

sorry you're having such a rough time :( your GP has tried more for you than the average neuro so be very happy with her/him!

When you see the neuro ask him about caffergot, might give that a try if you tried the whole bunch and it doesn't help...

I know you will do anything to get rid of your pain, still hang in there, it will get better. Keep posting!

PFDAN

painfull murazza

Title: Re: make it stop
Post by badfly on Aug 18^th, 2003, 6:56am

Sorry you are having such a tough time Hootch :-(

Hang in there. Count off every 5 or 10 minutes till the time you think the attack will end. When I am getting hit, I split my attack into six 5 min periods. I pace up and down, excersise etc, but always looking at my watch. That way I can motivate myself to get through it.
If I hit 30 min and the beast is still there, I light a cigerette and count off 2 more 5 min periods. Every attack WILL end! If you are episodic every cycle will end too!!

PF Vibes down the net to you !!!!!!!!!!