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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Length of Time for CH
        
(Message started by: jessipo on Nov 22nd, 2004, 1:07am)
Title: Length of Time for CH
Post by jessipo on Nov 22nd, 2004, 1:07am
I was wondering if anyone else has had clusters that lasted up to 5 + hours.  I even had one that lasted for 3 days contiguously.  Honest.  Anyone else have that?  I hear that they only last about 3 hours.  But, when that happened I almost killed myself.  I never wait that long to go to the hospital now, but at the time I had been to the hospital the previous week for a ch and the doctor called me a drug seeker and refused to help me.  Then I had to go to another hospital and wait another 3 hours to get some relief!  It was a horrible experience. :-/
Title: Re: Length of Time for CH
Post by kissmyglass on Nov 22nd, 2004, 2:09am
Before I knew what I had, my attacks would always last exactly an hour.  One night I had one last 90 minutes, I thought holy shit what if this thing short circuits and the attack doesn't stop.  Next day I bought a gun..One hour attack that night. Next day wifey found this site & so no need for the gun.  My guess is it's not possible to survive a 3 day continuous attack.


Kev
Title: Re: Length of Time for CH
Post by Svenn on Nov 22nd, 2004, 2:18am
A hit does last from 15-180 min according to the "bible"
About being refused help!!

My experience here in Norway and the ER are in some cases the same,so i advice those that tell me this to just ask for O2.Then it goes a bit easyer to get more help.

Just remember to have a letter from your neuro/GP telling what you have and what treatment are working.

It is also known that there has been some "drugseekers"claiming ch just to get some meds."Damn i hate those folks,because they do destroy a lot for us clusterheads"

Svenn
Title: Re: Length of Time for CH
Post by jessipo on Nov 22nd, 2004, 2:21am
Do you get clusters on top of migraines?  I wonder if that had anything to do with it?

What do you tell the doc when you have to go to the ER for him to believe you?  Especially when most of them haven't even heard of clusters vs. migraines.  They think that you should come in and just want to lay still and be quiet, whereas when I get these, I want to pace, scream, bang my head, and wish I knew a drug dealer who would give me something strong that would knock me out of my mind so I wouldn't give a damn about the pain I'm in.  Know what I mean?
Title: Re: Length of Time for CH
Post by jessipo on Nov 22nd, 2004, 2:27am
Sven

I know what you mean.  I hate drugseekers too.  You know, I asked the specialist I was seeing for a note and he refused!  I couldn't believe it, because he knew exactly what I was going through!  He said that he couldn't tell the ER doc how to take care of me.  So, I asked him to just write a note saying that I'm not a drugseeker and actually do suffer from migraines and ch's.  But, you know, in the US everyone is so lawsuit happy that Doctors are really unwilling to go out on a limb at all for you.  I've found that it's rare to find a doc who is compassionate about this, unless they themselves get migraines.  Thanks for the idea though.  Maybe now that I'm in California and will be seeing a new doc, he will be more helpful as far as the note goes.  I hope so.
Title: Re: Length of Time for CH
Post by pubgirl on Nov 22nd, 2004, 3:45am
Jessipo

Are you saying you were in constant agony for 3 days?
Also , do you regularly get attacks that are hours long?

Sorry to seem nosy, but I have to ask

Wendy
Title: Re: Length of Time for CH
Post by Svenn on Nov 22nd, 2004, 6:06am

on 11/22/04 at 01:07:40, jessipo wrote:
I was wondering if anyone else has had clusters that lasted up to 5 + hours.  I even had one that lasted for 3 days contiguously.  Honest.  Anyone else have that?




Thats crap.Not cluster,but maybe megraine,or something else

Svenn
Title: Re: Length of Time for CH
Post by nani on Nov 22nd, 2004, 8:33am
Welcome jessie- narcotics won't help clusters, so a dr shouldn't refuse you any help. If they are CH, you need different meds. See a neurologist and get on the right meds for your headaches. It's possible to have migraines and CH at the same time, but not likely a CH would last all day or more. You need a definitive diagnosis and the right meds. Good luck and hope you find some relief.
Title: Re: Length of Time for CH
Post by unsolved1 on Nov 22nd, 2004, 8:49am

on 11/22/04 at 02:09:17, kissmyglass wrote:
it's not possible to survive a 3 day continuous attack.




on 11/22/04 at 06:06:33, Svenn wrote:
Thats crap.Not cluster,but maybe megraine,or something else


enuf said  ;)
Title: Re: Length of Time for CH
Post by marlin on Nov 22nd, 2004, 9:44am
I don't think anyone could survive a 3 day CH.  

For me, this is the litmus test: If you can sleep your CH is over.

I'm no Dr but you may have a mix of two or many afflictions?
Title: Re: Length of Time for CH
Post by jessipo on Nov 22nd, 2004, 11:36am
Wendy--Yeah, I was in constant agony for 3 days, and I mean I was waaaaay past a 10 on the kip scale by the time I went to the ER and no releif whatsoever.  That's the time that I wanted to kill myself, just to be out of it.  I do have a very high threshold for pain.  I was stabbed once and it didn't even bother me.  But, this pain superceded that by 500%.  Also, I was in 100% more pain than what I usually have with a migraine. :(

Marlin--I did not sleep for 3 days and it hurt really bad to lay down even.

Any ideas?  Maybe the migraine was bad and the cluster came and went but since I had the migraine I couldn't tell?
Title: Re: Length of Time for CH
Post by marlin on Nov 22nd, 2004, 12:50pm
I suppose the migraine and CH together could explain the 3 days?  I feel for ya - OUCH.

Have you ever tried Imitrex?  If your doc checks you out and you're cleared I strongly recommend it.  Also get dialed in to O2 right away.  The trex is the only thing that works for me 100% of the time.  I don't know what I would do without it.  The O2, if you can get to it in time, is actually an easier way out as there are zero side effects but frequently I end up taking a shot sooner or later.

CHs are a killer.  A diagnosis and the right meds are the only answer.  I think I'm winding down on a cycle now, thank GOD, and I'm on a prednisone taper.  The pred might be short-circuiting what probably would have been a somewhat longer cycle - something to look into as well...
Title: Re: Length of Time for CH
Post by BlueMeanie on Nov 22nd, 2004, 2:37pm
I'm guessing, but I believe my longest ever is around 2 hrs. 40 min.

Don't know to this day how I survived it. Would NEVER last 5 hours. 3 days is obviously NOT a Cluster.
Title: Re: Length of Time for CH
Post by lionsound on Nov 22nd, 2004, 2:37pm

on 11/22/04 at 11:36:18, jessipo wrote:
Any ideas?  Maybe the migraine was bad and the cluster came and went but since I had the migraine I couldn't tell?

Hi.
I get migraines and clusters at the same time. Probably both firing on and off at the same time so it left you in a continual hell. It's happened to me.....just last month in fact. And I called my doc right away.

You really do need to see a doctor, better yet a neurologist. I see a HA specailist and still I'm instructed to call if I get a HA of any kind that goes on for three days. Please get checked out.

PF vibes for you...
-lionsound
Title: Re: Length of Time for CH
Post by pubgirl on Nov 22nd, 2004, 6:13pm

on 11/22/04 at 11:36:18, jessipo wrote:
Wendy--Yeah, I was in constant agony for 3 days, and I mean I was waaaaay past a 10 on the kip scale by the time I went to the ER and no releif whatsoever.  


I can't diagnose of course, but I would bet my house, it's contents and a night with my husband thrown in that it isn't CH.

My experiences tell me that the IHS definition is not flexible enough in terms of length of attack as I know many genuine Ch sufferers who have rogue longer attacks on rare occasions, but we are talking hours here not days.  Being in agony for 3 days just isn't CH, nor does it bear contemplating

Wendy
Title: Re: Length of Time for CH
Post by sandie99 on Nov 25th, 2004, 9:43am
I am so sorry for the pain you have experienced... [smiley=hug.gif] My longest ch was 3,5 hours, which was bad enough.

Best wishes & PF days,
sandie99
Title: Re: Length of Time for CH
Post by unsolved1 on Nov 25th, 2004, 9:52am

on 11/22/04 at 11:36:18, jessipo wrote:
I was waaaaay past a 10 on the kip scale


I wish everyone would stick to the KIP scale around here. There is no 'waaaaay past a 10 on the kip scale'. You'd be dead ::)

Unsolved
Title: Re: Length of Time for CH
Post by skyy on Nov 26th, 2004, 6:55pm
The CHs that would wake me up in the middle of the night would last from 45-120min.  I then started getting them when I woke up in the mornings.  Those would last 4hrs (half the day) and then the rest of the day I would have what I would call "after burn" a slight headache I would continue to have.
Title: Re: Length of Time for CH
Post by jessipo on Nov 27th, 2004, 2:23pm
Thanks for all of your advice and etc.  I'm sure now, that what I went through was just a nightmarish mig attack.  I'm sorry if I stepped on anyone's toes or offended any of you by thinking that I had a ch.  I guess, because of the amount of pain that I was in I thought that meant it was a ch.  But, I guess mig's can get that serious too.  

Wish you all a pf holiday season.

Jessipo
Title: Re: Length of Time for CH
Post by don on Nov 27th, 2004, 9:02pm
Nothing that conning a Doc out of some Class A narcotics cant help.
Title: Re: Length of Time for CH
Post by pubgirl on Nov 27th, 2004, 9:16pm
Don [smiley=laugh.gif]

You are like an elephant, you never forget!
Are you like an elephant in any other way? ;;D

Wendy
Title: Re: Length of Time for CH
Post by becky8 on Nov 27th, 2004, 9:20pm
It's funny though when you talk about days, since I am chronic I feel like I have had one for days before because its really on and off and on and off and your neck and back of head start to hurt ALL the time from the constant stress of it all, so IT CAN SEEM like days on end. Constant pain does strange things to your body. Don't you all just think the body wears down and your head just plain hurts no matter what????And no sleep,you just want cry out "leave me the f-ck alone"!!!!
Title: Re: Length of Time for CH
Post by Jonny on Nov 27th, 2004, 9:20pm

on 11/27/04 at 21:16:41, pubgirl wrote:
Are you like an elephant in any other way? ;;D


Word around the bath house is "Field mouse"
Title: Re: Length of Time for CH
Post by pubgirl on Nov 27th, 2004, 9:23pm
[smiley=laugh.gif] [smiley=laugh.gif]

Guessed as much ;;D
Title: Re: Length of Time for CH
Post by don on Nov 27th, 2004, 9:32pm
Thats not a trunk your looking at so back off with the peanuts.
Title: Re: Length of Time for CH
Post by Jonny on Nov 27th, 2004, 9:34pm

on 11/27/04 at 21:32:28, don wrote:
Thats not a trunk your looking at so back off with the peanuts.


Too fuckin funny....LMAO ;;D


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