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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> trying to understand
        
(Message started by: becky8 on Oct 5^th, 2004, 10:09am)

Title: trying to understand
Post by becky8 on Oct 5^th, 2004, 10:09am

Okay Everyone,
I am sure you are sick of me, but until I get to a real Neuro, my is useless!!! I need you guys so much. I am new to all this but not CH or whatever it is. I will again tell everyone my symptoms and what has happened for the last few weeks... My ha is onesided always, my eye on that side swells or drops, my ear feels clogged and hurts behind it, my jaw hurts. My headaches are chronic, if I have 1 week PF thats a long time. They got chronic over the last year, thats why I and Dr.'s always thought they were sinus related. Now I am rockin and rollin with them, they are my life now!!! And at first I was so freaked, but now I am getting really pissed. And with your help and getting into see a new Neuro maybe I can get my life back. I finally went to a Neuro who was almost laughing at me when I said I think I have CPH or CH. I thought it might be CPH cause my seem to come and go more, but after last week I know its not right. I got the Neuro to give Indomethacin and it didn't work, matter of fact I got hit like never before this last weekend. I ended up at the ER, so it's got to be CH. I am learning about what you call shadows and I have them so much I just get used to them. When you guys talk about episodes, and you say I had a 6 week episode, what do you mean. That you had ha for 6 weeks. Cause I have had episodes for a year and a haif. With PF days here and there. I am just trying to understand all of this. This last one was like no other I have ever had and scares the crap out of me. So everyone please while I am trying to get into a real Neuro what to expect and what I can do to stop them froming being real bad while I am waiting.

Title: Re: trying to understand
Post by nani on Oct 5^th, 2004, 11:38am

Sorry you are having such a bad time. Episodic clusters come in episodes that can last a few weeks to a few months. During an episode you get hit with severe pain from a few to several times a day. It's normal to have shadows (less intense pain) in between the bad hits. Chronics (like me, now) have shadows everyday with several hits of more intense (but not as intense as most episodic) headaches. I also get hit occasionally with a bad episode (days and / or weeks long) where the pain can go to a kip 9. I also get an occasional pain free day. Go to the ouch site (links at left) and get info to give to your next neuro. Hang in there. [smiley=hug.gif] BTW I'm not sick of you and I doubt anyone else here is.

Title: Re: trying to understand
Post by vig on Oct 5^th, 2004, 11:45am

How many minutes does the typical headache last?

"When you guys talk about episodes, and you say I had a 6 week episode, what do you mean. That you had ha for 6 weeks."
an episode is a 'cluster' of headaches.

Title: Re: trying to understand
Post by becky8 on Oct 5^th, 2004, 2:11pm

My headaches usually last 5 to 45 minutes on and off all day, and go from kip5 to a kip8 or 9. But this weekend I don't know what happened to me. Wednesday (a day I planned on going to the pumkin farm with my daugther) I had my normal headaches on and off. It was very hard to get thrught the day. And Thursday and Friday were the same. Friday the headahes were hanging like an hour and more and getting more and more intense, went to bed and was up all night with one. but still not wanting to use my imitrex, dumb mistake. BySaturday morning I was in pain and used the imitrex. This headache got alittle better but still there all the time, not like my ones that come and go. By later in day I hurt so bad I did the imitrex again, this time it didn't seem to help much at all. I ended up in the ER that night. they gave H20 and that didn't do anything, then they gave a shot toradol, that didn't work. Finally they gave me a shot of Dilavdid and Phenergan. Also this time I felt really sick to my stomach. Sunday even after that ER trip I had like a hang over feeling and yesterday too. Today finally I feel somewhat normal. I am lost???? What do you all think????

Title: Re: trying to understand
Post by vig on Oct 5^th, 2004, 4:48pm

If Imitrex worked, try Zomig. They're related, but Zomig lasts longer, for me, it lasts 12-24 hours instead of 1-2 hours with Imitrex.

I'm reading about many people's success with DHE lately. Might be worth trying.... ask the doc

Title: Re: trying to understand
Post by Superpain on Oct 5^th, 2004, 5:01pm

Hang in there. My last cycle was over 2 yrs long. And it always gets worse before it gets better.

Title: Re: trying to understand
Post by becky8 on Oct 5^th, 2004, 6:55pm

Thanks for telling me that superpain or chris!!! LOL!!! I am not going to freak anymore, Im really pissed with these CH ha's. And I am going to fight now, if you asked me last week I'd be out of mind with worry how bad the next one will be. And with everysmall one and shadow I'd be thinking "what's going to happened next"!!!

Title: Re: trying to understand
Post by holistic_love on Oct 7^th, 2004, 9:50pm

go to this website erinelster.com she will cure you of your headaches

Title: Re: trying to understand
Post by Sean_C on Oct 7^th, 2004, 10:02pm

on 10/07/04 at 21:50:54, holistic_love wrote:

go to this website erinelster.com she will cure you of your headaches

This should get interesting......................let me guess its for a small one time fee?

If I'm from Mars do I get a discount ;;D

Sean......................

Title: Re: trying to understand
Post by Gator on Oct 9^th, 2004, 8:08am

One thing you need to watch out for is someone offering you a "cure" As of yet, there is no cure. Believe me, when it comes about, this entire board will be lit up like a Christmas tree with people talking, laughing and crying with joy.

There are some who would take advantage of your desire to be pain free and tell you things like "Rub catshit on your head." Don't laugh - it happened here in the guest book. They may have several of their friends post follow ups saying it worked for them. Then they sit back and laugh at you in your pain as you post that it did not work for you. Sick ba$tards. Others will sell you some new procedure, magic elixer or something to snort up your nose and then take your money and leave you hurting (or worse) with an empty wallet.

Best thing to do is come here and ask if anyone has ever heard of xxxxxx. There will be plenty of people about to steer you straight.

Wishing you good luck with the new neuro search.

Gator

Title: Re: trying to understand
Post by clarence on Oct 9^th, 2004, 8:24am

Becky, listen to nani, vig, superpain, sean c, and gator. DO NOT listen to holistic_love.

Gator is right about these hucksters.
It continually amazes me how people either gain pleasure or attempt profit from other people's pain. Though, as I believe deeply in human depravity, maybe it shouldn't.

Casey