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        New Message Board Archives >> 2004 Posts >> Re: how Long?
        
(Message started by: echo on Dec 16^th, 2004, 11:21am)

Title: Re: how Long?
Post by echo on Dec 16^th, 2004, 11:21am

This post raised a whole bunch of questions for me.

What type headache -- 10 hours is too long for constant CH.

What meds?

Give us a little more infor and we'll give up what we can.

Title: Re: how Long?
Post by becky8 on Dec 16^th, 2004, 11:22am

Are you sure you're at right place? [smiley=huh.gif]Not trying to be negative but you really should read the side bar and take the CH quiz.

Title: Re: how Long?
Post by Redd715 on Dec 16^th, 2004, 11:47am

Again Please read the side bar....take the quiz, and then the 30 question quiz.

Clusters are rare, and there are many ill informed docs out there.

I'm leaning toward mis diagnosis here...anyone else?

Title: Re: how Long?
Post by becky8 on Dec 16^th, 2004, 11:53am

Listen Hon,
I 'm gonna try a help you. As will many others here, but you need to see a neuro first and find out if its really CH. Clusters can go on for days but not one headache that last for days, follow me? The longest one goes for is maybe 3 hours, but you could have alot of those in one day! Understand, it might feel like one long one but its many hits all day. Drugs we use here are like verapamil,lithium these are preventives. There are others too but these are the most popular. Imitrex is an abortive, that stops the pain right then. You need to check out this stuff on this site and the OUCH site on the side boards. More people will respond here I am sure and help you.Good Luck!

Title: Re: how Long?
Post by Rock_Lobster on Dec 16^th, 2004, 11:59am

Oh. Then they do not have CH. Easy peasy.

Title: Re: how Long?
Post by vig on Dec 16^th, 2004, 12:00pm

It's really rare that CH headaches go on longer than an hour or two. 11 hours is almost proof that it's NOT a cluster headache.
We don't mean to minimize the grief you're going through, it must be horrible to watch. But it does mean there's a reasonable chance at misdiagnosis going on here.
Good luck Exhausted.

Title: Re: how Long?
Post by becky8 on Dec 16^th, 2004, 12:00pm

Explain carefully, if its CH I know how you must be feeling, and I am so sorry. Hang on, and tell us how they are in detail, carefully!!! We will start from there. Have you seen a doctor, sometimes docs don't know CH so they give the wrong meds. What are symtoms? Besides your head killing you, anything else?

Title: Re: how Long?
Post by Redd715 on Dec 16^th, 2004, 12:01pm

NO...I repeat NO single attack lasts 11 hours. you go from zero pain to intence in 10 minutes then back to zero pain. What you are describing is NOT a CH attack.

Title: Re: how Long?
Post by ExplodingEyeBall on Dec 16^th, 2004, 12:02pm

I think every one is trying to tell you and your loved one that this doesn't sound like CH.

The duration of 10 hours at a time that your talking about is very, very rare if not non-existent.

It sounds like there may be other problems that are not CH related.

Have them make an appointment with a neuro NOW and get the head checked out. It may very well save their life.

It never hurt to go get the test (MRI, EEG, etc...) and rule out other causes.

Just my opinion.

Pat

Edited to add:

Like Redd said most people go from 0 to 10 in a matter of seconds and stay that way for 10 to 45 minutes.

When I am in the middle of a cycle, I can go up to 3 hours (Which is a LOT) before the pain goes away, but 10 hours is not normal and should be checked out soon.

Title: Re: how Long?
Post by vig on Dec 16^th, 2004, 12:03pm

well, let's dig deeper...
What are the other symptoms?
Can he handle light and sound?
Vomiting?
Is he laying down?
Where exactly is the pain located in his head?
Top? bottom?

Title: Re: how Long?
Post by echo on Dec 16^th, 2004, 12:13pm

on 12/16/04 at 11:17:35, exhausted wrote:

.......do they eventually die or what?
Not from the CH

the amount of drugs consumed amazes me, a person should be in the hospital at this point dont you agree?
Probably not a bad idea at this juncture. If CH has been confirmed in the past there may be something else that has manifested to cause this lenghty exteme pain.

Title: Re: how Long?
Post by Rock_Lobster on Dec 16^th, 2004, 12:13pm

10 hours behind the eye... yow... what can that be?

Are they abortable with a triptan, ie Imitrex, Zomig, et al?

Title: Re: how Long?
Post by echo on Dec 16^th, 2004, 12:17pm

Fantastic that they stopped. Thanks for the PM's. Does sound like CH from what you told me in the PM.

Title: Re: how Long?
Post by vig on Dec 16^th, 2004, 12:24pm

Hi Exhausted,
What do you mean "can't move them"?

Either way, CH is a progressive disorder, it only gets worse if it's not treated properly.

Title: Re: how Long?
Post by ExplodingEyeBall on Dec 16^th, 2004, 12:25pm

For the sake of not scaring anyone or sounding like a doomsayer, I have not mentioned my fear with this but I now feel like I have no choice.

CH hurts real bad and it's in the same place as you are explaining.

Now.... Add to that the possibility of having a brain tumor or maybe an aneurysm or anything not right in the sinus cavity along with the CH and 10-11 hours of torture doesn't seem out of the question.

Talk to a neuro NOW. Forget about the past diagnosis. Something is seriousely wrong and it needs attention.

Pick up the phone and make an appointment.

Title: Re: how Long?
Post by Margi on Dec 16^th, 2004, 12:29pm

something's not right with this....sorry, but I smell a rat here. There's something hauntingly familiar about this style of writing.

I apologize in advance if I'm out of line here but, please get this person to a hospital immediately if all of the above is true. Cluster attacks don't last that long, it could very well be rebounds from the laundry list of meds and narcotics, or (God forbid) it could be a real medical emergency if the pain is lasting that long and is as severe as you portray.

again, if I'm off base here I'm sure I'll be shot down but seeing a supporter put posts up like these just doesn't ring true with me.

What's your sufferer's name here, Exhausted?

Title: Re: how Long?
Post by vig on Dec 16^th, 2004, 1:03pm

It's not negative...
We're trying to help.
It's definitely NOT classic CH if it's still going, but there ARE variants, and maybe, just maybe, we can help find you BOTH some help.
Still...
Is he vomiting?
Is he sensitive to light or dark?
Is he laying down?

And if he's diagnosed improperly, then the wrong medicines may aggravate the situation, not alleviate it.

Oh, and by the way, many of the prescription drugs are VERY mind altering, in fact, some are more so than the alternative. just my humble opinion.
;;D

Title: Re: how Long?
Post by vig on Dec 16^th, 2004, 1:10pm

We want the best for both of you.
Good luck.
GET SOME SLEEP!

Title: Re: how Long?
Post by BobG on Dec 16^th, 2004, 1:25pm

on 12/16/04 at 12:29:58, Margi wrote:

something's not right with this....sorry, but I smell a rat here. There's something hauntingly familiar about this style of writing.

seeing a supporter put posts up like these just doesn't ring true with me.

I have to go along with Margi here. Something ain't right with this picture.

exhausted, your description of symptoms of "they" and "them" and your refusal to answer any questions leads me to think you're just playing games here.

P.S. Have a nice Holiday season. :D

Title: Re: how Long?
Post by Jimi on Dec 16^th, 2004, 1:37pm

I'm with Margi and Bob. If they have had it for years, then they know of 02 and triptans. The drugs mentioned are never used for clusters. Not passing the smell test to me.
If that person is a member here, then there would be no need to withhold that info unless the supporter doesn't want the sufferor to know they posted.
You guys tried. I heard no questions from him(her) concerning 02 or triptan, verap, lithium etc.
I hope it is bogus, because if it is true, somebody is having serious problems.

Title: Re: how Long?
Post by becky8 on Dec 16^th, 2004, 2:06pm

I agree and she was PMing me and I was TRYING to help bu tshe would not answer any questions and was actually rude to me. Kinda pisses me off cause I was really worried about her and TRYING again to be helpful!!

Title: Re: how Long?
Post by becky8 on Dec 16^th, 2004, 2:23pm

WTF??????

Title: Re: how Long?
Post by BlueMeanie on Dec 16^th, 2004, 2:32pm

on 12/16/04 at 11:17:35, exhausted wrote:

the headaches now last for over 10 hours

Not a Cluster Headache

Quote:

this time its been lasting for almost a month every day for ten hours at least...doctor has tried morphine tramadone sp? a anti depressent, xanax...among some things......somma, flexiril...there has been so many taken

Not Cluster Headache medicine

Quote:

the CH sufferer I'm writing about has had a lot of experience with it and knows what it is

Doesn't take 02, Imitrex or any Cluster headache drugs but is experienced ?

Quote:

I dont think they want me being to specific about it and who they are...I'm juust trying to catch up here....I love them and want the best for them.

Is it more than one person ?

Quote:

to the morons and judgemental cretins...I am a male alwyas have been and I ask the questions you give the answers. none of you are doctors and none are experts.

Then why ask the questions if you don't want the CORRECT answers ?

Quote:

have attacked my girlfrined in the past, her and I just talked about it and she told me as much as to who would be supportive and who wouldnt be....and she got it right regarding who would help.

Nothing but games. Just checking to see who's who it looks like.

For your info, people are here to help, NOT play silly games.

Title: Re: how Long?
Post by BobG on Dec 16^th, 2004, 2:32pm

on 12/16/04 at 14:11:53, exhausted wrote:

to the morons and judgemental cretins Wow. Someone got up on the wrong side of his stall this morning!...I am a male alwyas have been Hey, me too! and I ask the questions you give the answers Wrong! You refused to answer and evaded the questions ...none of you are doctors and none are experts. True. Are you?
I am not rude unless attacked, you attacked me and have attacked my girlfrined in the past, her and I just talked about it and she told me as much as to who would be supportive and who wouldnt be Can we see her list? I want to see who the morons cretins are....and she got it right regarding who would help.

thanks to those that can read. You're Welcome.

Hope you have a nice Christmas. Hope your girlfriend's pain goes away. And I hope Santa brings you a Spell Check.

:D

Title: Re: how Long?
Post by ExplodingEyeBall on Dec 16^th, 2004, 2:37pm

For the record here...

Becky8 was concerned enough that she PM'd me to tell me she was leaving for a while and asked me to keep an eye on what was going on and help if possible.

Pat

Title: Re: how Long?
Post by Jeepgun on Dec 16^th, 2004, 3:17pm

on 12/16/04 at 14:11:53, exhausted wrote:

I ask the questions you give the answers...none of you are doctors and none are experts.

If years and years of suffering, trying various treatments, and having first-hand experience doesn't make us experts, then why are you even bothering to come here in the first place?

"I ask the questions and you give the answers," is a real shitty attitude, and is guaranteed to get you off to a very bad start, here. You asked questions and people were patient and provided support, care, and answers. If you don't provide accurate and complete information, you are going to get inaccurate and incomplete answers. GIGO.

Try being less circumspect and confrontational. You just might find that people are more willing to help than you seem to believe.

Cheers,
-Frank

Title: Re: how Long?
Post by Margi on Dec 16^th, 2004, 3:44pm

on 12/16/04 at 14:11:53, exhausted wrote:

you attacked me and have attacked my girlfrined in the past

your "girlfrined"'s name wouldn't happen to be Marie would it?

Title: Re: how Long?
Post by Charlie on Dec 17^th, 2004, 1:19am

There are always gaps between cluster hits. They will subside quickly and start up later....perhaps minutes, hours or days while in cycle. There has never been an instance of uninterrupted cluster attacks lasting as long as you say. I doubt anyone could stand it.

Perhaps you mean that these attacks come and go over this period of time with some periods of considerably lesser pain rather than completely uninterrupted.

One good way to be pretty sure they are clusters is that they will wake one out of a sound sleep. Also, no one can lie down or rest during an attack. If that's the case, they almost certainly aren't clusters

There is a lot of information here and I encourage you to look it over. Please come back and let us know how you are doing.

Charlie

Title: Re: how Long?
Post by Carl_D on Dec 17^th, 2004, 2:49am

I might be shot by everybody for saying this but...

It IS possible that what could be happening is your girlfriend gets hit with a level 10 attack, but then it reduces to a heavy shadow, around a level 3-5. For some cluster sufferers this is the case, and they are never really pain free in a cycle.

However, if it is peak pain for the entire 10 hours, then it is not cluster, though the symptoms may be mimmicking CH, it could be any various form of migraine.
The pain meds, anti depressants and Xanax (anti anxiety) will have no effect on a cluster. Only an abortive such as o2 breathed at 10-15 litres for about 10-20 minutes, or a Triptan such as Imitrex, Relpax, Zomig, Axert, etc. I have had clusters for 17 years and in that time, the longest one has ever lasted was 4 hours - and that only happened twice. They usually clock in at about 45 minutes to an hour and a half.

Exhausted... there are alot of good people here giving you good advice. However, your lack of info is raising the red flags that this isn' CH but another form of headache. I'm sure a doctor may have told your girlfriend she has Clusters. But there are alot of people who DON'T have clusters that are diagnosed as having them, and then others who DO have them but don't know what it is. In any case, if you're girlfriend has not had an MRI, she needs to ASAP to rule out a possible tumor.

Peace,
Carl D

Title: Re: how Long?
Post by Gator on Dec 17^th, 2004, 3:32am

on 12/16/04 at 14:11:53, exhausted wrote:

to the morons and judgemental cretins...I am a male alwyas have been and I ask the questions you give the answers...none of you are doctors and none are experts.
I am not rude unless attacked, you attacked me and have attacked my girlfrined in the past, her and I just talked about it and she told me as much as to who would be supportive and who wouldnt be....and she got it right regarding who would help.

thanks to those that can read

Who the FUCK do you think you are, coming into MY house and asking questions without giving ANY information to base an answer on and then come off with an attitude like that?

Seems to me that if you were worried one iota about someone's health, you would be falling all over yourself to give us the info we need to give an intelligent answer.

And if we are not intelligent enough to answer your questions as you seem to feel, then why come here and ask in the first place?

You want to ask the questions? Ask me where the door is bi+ch.

Gator

Title: Re: how Long?
Post by marieinthesprings on Dec 17^th, 2004, 5:20am

on 12/16/04 at 15:44:20, Margi wrote:

your "girlfrined"'s name wouldn't happen to be Marie would it?

why do u think it was me.............or are u talking about another Marie????? Not nice dropping names......and nope not me, i have a husband not a boyfriend and i ask my own questions.........cheers...........Marie

Title: Re: how Long?
Post by Margi on Dec 17^th, 2004, 9:36am

nope, sorry Marieinthesprings, I was referring to another "Marie" of a time long ago and far away. Sorry for the confusion, I didn't mean you. The other Marie also posted as "August", etc.

Title: Re: how Long?
Post by john_d on Dec 17^th, 2004, 10:08am

me thinks the troll has vacated the thread

Title: Re: how Long?
Post by Donna_D. on Dec 17^th, 2004, 8:28pm

on 12/17/04 at 10:08:53, john_d wrote:

me thinks the troll has vacated the thread

Darn, and I had my stick all sharpened up!

DD

Title: Re: how Long?
Post by exhausted on Dec 29^th, 2004, 10:59am

thanks for the input

Title: Re: how Long?
Post by john_d on Dec 29^th, 2004, 11:45am

on 12/29/04 at 10:59:30, exhausted wrote:

thanks for the input

[smiley=crackup.gif]