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(Message started by: Reecy on Jan 14th, 2004, 11:37pm)

Title: Stupid Question? Re: Periodicity+
Post by Reecy on Jan 14th, 2004, 11:37pm
Okay now that I am getting a handle on the pain via O2 and understanding these cluster bursts, I am realizing that I am experiencing more than I thought.  

Now let me explain.  Before it always seemed that my "headaches" ran together and waxed and waned throughout the day but never was I pain free.  By the end of the day, everything would build upon itself to the point where I couldn't think and I would down 12mg dilaudid (between 7pm and 3am) just to cut the pain and pass out.

However, O2 has taken away that "build up" between the jolts.  So I am seeing that today I have had 5 attacks (between 5:30am and 9:30pm).  Is this right or am I going crazy here?  I mean it has been awful these last 16 or so days.

Before my official dx of CH, I would suffer from what I called migraines 2-3x/month and suffer a chronic "headache" what I always called my shadow on normal days.  So is this eposodic or chronic?  I am getting bogged down in terminology as well.

So I guess this is more than one question here.  Thanks for putting up with a newbie.

Reece

Title: Re: Stupid Question? Periodicity+
Post by ave on Jan 15th, 2004, 6:50am
Getting that number of attacks a day is of course NOT fun, but pretty normal for clusters.
Glad you can nip them off with O2.

This has nothing to do with episodic or chronic. Chronic is if you get cluster attacks all the time and have not been pain free  2 weeks or more for a very long time.

Things can get complicated if you also have migraines. Those sufferers that get the double whammy can have a migraine riding in on a cluster and vice versa.
So migraines may go on all the time for you in their "natural" rythm while you also have periodic cycles of clusters.

Keep a headache diary, that may help you differ between the two; also print out  the cluster quiz and put it next to your diary to help determine what is which.

And no, NOT a stupid question at all. Ask...

Title: Re: Stupid Question? Periodicity+
Post by catlind on Jan 15th, 2004, 8:58am
The IHS changed the determination for chronic in 2003.  It's now 30 days pain free (with or without meds) within a one year period.

I wouldn't worry too much about the chronic or episodic. The thing to focus on for right now is as ave said and keeping a journal of the headaches so you will learn to differentiate the kinds of HA's you are experiencing.

5 a day is not at all uncommon.  But don't get yourself worked up over terminology, I've found that it's easier just to treat them as they come and not worry about what labels the docs want for them.

my 2 cents :)

Cat

Title: Re: Stupid Question? Periodicity+
Post by TomM on Jan 15th, 2004, 9:06am

on 01/15/04 at 08:58:26, catlind wrote:
5 a day is not at all uncommon.  But don't get yourself worked up over terminology, I've found that it's easier just to treat them as they come and not worry about what labels the docs want for them.

my 2 cents :)

Cat
Excelelnt advice by a very knowledgable person. Thank you, Cat.

Title: Re: Stupid Question? Periodicity+
Post by Reecy on Jan 15th, 2004, 9:10am
Ave and Cat,

Thank you for your replies and advice.  I'll start keeping that headache diary right away.  I'm sure it will come in very handy when I visit the neuro at the end of the month.

Reece

Title: Re: Stupid Question? Periodicity+
Post by pubgirl on Jan 15th, 2004, 10:13am
Reecy

I'm lucky like you and get both migraines and Clusters and shadows. It is VERY hard sometimes to decide exactly what is going on.

My remedy for what it's worth:

I can prevent most of my migraines , especially the hormoney ones with 1000 mg of Oil of Evening Primrose per day. If I stop taking it, the migraines return with a vengeance.(good for your skin and hair too)

I now treat almost all my migraines and clusters with 02 and it seems to work.
I use Imigran for the humdingers of either variety.
I use Zomig in tablet form when I use the 02 to clear any subsequent rebounds. I also occasionally use it or Imigran nasal for daytime pain with migraine when I am out as I don't carry the 02 with me.

The last tip, don't hang about even for minutes trying to work out how bad the pain is going to be. JUST HIT IT IMMEDIATELY  with the 02 or triptan as either are recommended for CH or  migraine

PF days to you


Wendy

Title: Re: Stupid Question? Periodicity+
Post by BlueMeanie on Jan 15th, 2004, 5:42pm
Reecy,

It's damn if you do & damn if you don't. What i'm trying to say is sometimes I can either let my head build up without aborting if the CH doesn't get too painful, but then the ultimate KIP eventually arrives. Sometimes when I can keep aborting every CH as soon as they arrive, I get several lower KIP's throughout the day & night. Not sure which is easier, but that seems to be how it works for me.

The good thing is if you're episodic, the Beast will eventually depart. Usually within 12 weeks for me. Not sure about Chronics. I've still got shadows into month 5 now with very few major attacks over the last month.

Sending PF Vibes your way.



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