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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> HAs have to run their course?
        
(Message started by: rbmb on Mar 25^th, 2004, 5:42pm)

Title: HAs have to run their course?
Post by rbmb on Mar 25^th, 2004, 5:42pm

I'm enduring the longest cycle I've had so far and being someone who tries to find some logical explanation for these miserable HAs, I wonder if once these things start, they need to run their natural course and if taking all these meds simply prolongs the cycle by delaying a process that needs to unfold on its own. Of course this theory wouldn't account for those who have chronic CHs.
My first mistake is probably trying to make sense of something that can't be understood....why are they worse sometimes than others? When I think I've got the pattern figured out (one mild HA followed by a bad one followed by a mild one all at about the some time of night), the pattern changes...only one HA and at a different time than before. When I have a bad one, I try to think of something I did or took or ate that might have had an effect and other than alcohol(a for
-sure trigger for me), I can't find any cause and effect relationship. It's making me crazy.
Rich

Title: Re: HAs have to run their course?
Post by thomas on Mar 25^th, 2004, 5:45pm

What meds are you using?

Title: Re: HAs have to run their course?
Post by t_h_b on Mar 25^th, 2004, 6:26pm

There MAY be no reason, no trigger, nothing external except that these damned things are very, very tricky.

If so, you just have to learn to accept that. My mental state improved greatly after I did.

I personally don't personify CH as "The Beast", but it makes sense to me that so many people do because it has a mind of its own.

I think of it like this: There's something screwed up in my brain that is related to melatonin. The brain is a very complicated, poorly understood thing. The chemicals produced in the body that various cells and organs use to communicate with each other are even more poorly understood. Normally the brain tries to maintain a consistent rythm but it's screwed up so it can't succeed. That's why it follows a pattern for a while and then changes.

Please note I said I think of it like this and I am not pretending that this is a scientific analysis based on a strong understanding of anatomy, physiology, the neurovascular system, or endocrinology. This is just what helps me make sense of it so I can mentally accept it instead of constantly wrestling with it like you are.

Or, like it says under Thomas' picture above, it's "(j)ust another one of life's mysteries."

Title: Re: HAs have to run their course?
Post by FZfan on Mar 25^th, 2004, 6:31pm

on 03/25/04 at 18:26:20, t_h_b wrote:

Please note I said I think of it like this and I am not pretending that this is a scientific analysis based on a strong understanding of anatomy, physiology, the neurovascular system, or endocrinology. This is just what helps me make sense of it so I can mentally accept it"

I totally understand this. I like to think of it as a birth defect - nothing more, nothing less. That's how I mentally accept it.

Title: Re: HAs have to run their course?
Post by rbmb on Mar 25^th, 2004, 6:47pm

This cycle I've been using Topomax (was up to 175 mg at highest dose) and it worked great for about a month and a half......mostly just shadows with an occasional KIP 7or 8 at night. Then it just seemed to stop working. Neuro then put me on Veramaril (sp?) 125mg (I think) SR, which did nothing....in fact HAs became more severe and frequent. Started a prednisone taper today. Use DHE IM as an abortive.
In past cycles have used: O2-slight reduction in pain, that's all
prednisone - worked for a while, then HAs returned
lithium - same thing
topomax - effective at first
veramaril - did nothing at the dose I was taking
asked Neuro to put me back on prednisone as I haven't taken any this cycle, maybe it will break the cycle?
Rich

Title: Re: HAs have to run their course?
Post by BlueMeanie on Mar 25^th, 2004, 7:15pm

I may get flamed, but what the heck. I think your absolutely correct !!!!

Not sure about Chronics, but episodics must just wait it out. No meds will end a cycle, prolong a cycle, or shorten a cycle. The Beast leaves when it damn well pleases.

I've had long cycles, short cycles & everything in-between. Did too many types of meds and went with no meds.

I'm not saying meds will NOT help make a cycle a little easier, but meds don't do squat to end a cycle. (Maybe shrooms) never tried yet.

Again. Every cycle is different. The Beast is the only one that decides when it's gonna leave & head to its' next victim.

Title: Re: HAs have to run their course?
Post by 9erfan on Mar 25^th, 2004, 10:44pm

Blue, I totally agree with you. At least that's what I believed when I was episodic.
In the old days when I was episodic, I would wind up in the ER when the episode would become unbearable. They would give me "whatever" and a couple of days later the cycle would end. I was many years into this nightmare before I realized it wasn't what they gave me in the ER that ended the cycle, it was just time for the cycle to end. My episodes would get REALLY bad right before they were going to end and I wouldn't go to the ER until they got REALLY bad.

It wasn't until one episode when my mom suggested "let's go to the ER BEFORE they get really bad in order to prevent them from getting really bad". So I went and got "whatever" and of course it didn't stop the episode from worse. They cycle was going to end when it wanted to end.
After that, I stopped going to the ER. :-[

Title: Re: HAs have to run their course?
Post by joesf on Mar 26^th, 2004, 3:39pm

I notice the same thing too. I have been using o2 which has helped with the little ones, but i got an intense one 2 nites ago around 9 pm. The O2 did not help. Its been about 2 weeks into my usaul one month cycle and time for the peak HAs. I had to jump in the shower. Finally had to get out, still in pain, but at least the shower helped to bear it. Back on O2 it went away. Then 45 minutes later it was back. I ended up back in the shower and finally back on the o2 till 2am. It got bearable but never went away till morning.
I had a free day yesterday but this morning I got one at 3 am which the O2 zapped in about 15 minutes then another at around 5 am, O2 zapped that one too.
But when the bad ones come . Nothing stops them. I used to run around the block. It wouldnt hurt as bad when I was running, but then I would get exhausted and have to stop, and the HA would just come right back. I cant run now as I just had knee surgery, so I tried the O2.
It does help.
This is my first episode in 5 years. When i was in my late 30s I had pain killers from a doctor. They prevented the little guys but the big ones came right through and punished me. I stoped the pain killers years ago.
I did get one HA on a five hour flight to hawaii. It was bad and I couldnt do anything. I was travelling alone. I sat in my chair and tried to space it out. It semed like we had just taken off from SF and we were landing in Honolulu. The whole flight I was so consummed with the HA it just seemed to go by. It was terrible though.
One thing i notice is my sinuses sometime crack when a HA is coming or going.

Title: Re: HAs have to run their course?
Post by Pegase on Mar 26^th, 2004, 10:38pm

on 03/26/04 at 15:39:36, joesf wrote:

One thing i notice is my sinuses sometime crack when a HA is coming or going.

Same for me... and sometimes i'm feeling it in my ears too...

Weird;-)

Pegase

Title: Re: HAs have to run their course?
Post by genss on Mar 30^th, 2004, 12:20pm

I am episodic and prednisone has worked for me both times. The first time it got rid of my headaches the day after I started taking them and that was only a week into my CH. They normally last 1-2 months. This last time they lowered my dosage and I only took a 6 day taper. It took away the CH until I stopped taking the prednisone. So then I was about 3 or 4 weeks into the CH when I started taking the prednisone again at the higher dosage. It worked right away though. It's the 18 day taper.

Title: Re: HAs have to run their course?
Post by Filbert on Mar 30^th, 2004, 1:33pm

I agree with the general view so far expressed in these posts.Last summer I went through my 11th or 12th cycle[who's counting?] First time with any meds.Started with sumatripan pills then on to the injections-yep significantly longer cycle .But then again some people have longer remissions but longer cycles as they get older-Thats it I give up........sorry

Title: Re: HAs have to run their course?
Post by rbmb on Mar 30^th, 2004, 1:49pm

I've been on a prednisone taper for about a week now....have still been getting a ha every night and have been taking DHE shot but shot is now working in 10-15 minutes instead of 25-30 minutes. Last night I woke up twice with what started as a ha, but it went away quickly and I didn't need shot. I'll see what happens tonight....maybe these things will go away now? Who knows.
Rich

Title: Re: HAs have to run their course?
Post by floridian on Mar 30^th, 2004, 1:49pm

I don't think there is a "natural course" that the headaches have to run. They occur because something is glitched up. If a therapy can reduce the glitchiness, it can help with the headaches. Unfortunately, meds are only partly effective at fixing our metabolism, and they can have side effects. But when they help, they do help.

Title: Re: HAs have to run their course?
Post by Mikey on Mar 31^st, 2004, 3:18am

I think each individual CH does run it's course, but on the other hand, the disease itself don't. And yes i said disease, that's what the learning Hospitals seem to be calling it now, and they call it a deadly one at that.....To quote Dr. Alan Finkle ( Head of Neurology, and the Headache Clinic at UNC-Chaple Hill) "Cluster Headaches is a very deadly disease"

If you have CH, you just have to learn to live with it, Try to find a treatment, and pray for REMISSION!!!!

Mikey, >:(.......Being Chronic SUX a big one!!!!

PS. Just a little pissed off tonight!!

Title: Re: HAs have to run their course?
Post by genss on Mar 31^st, 2004, 11:39am

To quote Dr. Alan Finkle ( Head of Neurology, and the Headache Clinic at UNC-Chaple Hill) "Cluster Headaches is a very deadly disease"

This scares me. Why is CH considered deadly?

Title: Re: HAs have to run their course?
Post by Pegase on Mar 31^st, 2004, 12:33pm

[quote author=genss

This scares me. Why is CH considered deadly?
[/quote]

Yeah why??

Pegase

Title: Re: HAs have to run their course?
Post by Filbert on Mar 31^st, 2004, 12:47pm

I'm pretty sure [and somebody will correct me if I'm wrong] that this is just referring to the fact that some people commit suicide because they can't take anymore pain!

PFD Filbert

Title: Re: HAs have to run their course?
Post by Mikey on Mar 31^st, 2004, 2:32pm

Yes Fibert!! That is correct! That's exactly what he ment by that, because he said it during one of my visits to his office.

Mikey....