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Topic: Episodic cycle scale (Read 375 times) |
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Dave
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Episodic cycle scale
« on: May 13th, 2006, 2:12pm » |
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It is fantastic to have a scale like the kip scale to describe the strength of individual cluster headache attacks. This give us a common language.
For episodics, I'd propose that it would also be useful to have a scale to describe the strength of the overall episodic cluster cycle period. I am not really sure what other people's episodes are like overall, and I am sure that we've all experienced different levels of cycle strength.
Also, it seems that cycles have variable strength, which might be influenced by various environmental and other stimuli taking place over a period of weeks or months (weather, daylight, stress, diet, etc...). "What makes a cycle better or worse?" I think is a good question.
Here is what I would propose for a cycle rating scale:
Level 1 Cycle: At least one real CH attack (stronger than shadows), but the cycle seems to go away on its own with little duration.
Level 2 Cycle: CH's seem to respond within a few days to first line of defense prophylactic meds (eg verap). Prophylactic meds keep the CH's away for the duration of the cycle.
Level 3 Cycle: Some CH attacks strong and persistent. Need to try more than one measure to fight it off. But treatment does work, and you suffer through only a few weeks at most.
Level 4 Cycle: CH attacks are strong, often frequent, and persistent. Meds and abortive treatments help some, but CH's are highly resistant to them. Going from one med to another to find something that works.
Level 5 Cycle: Pain for months and little you can do about it. Life really sucks.
WHAT ARE YOUR CYCLES LIKE???
I can say that most of my cycles, fortunately, have been level 2. However, I have experienced level 3 and level 4. Never level 5. Once, I had a level 1.
Dave
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chewy
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Don't need to re-invent the wheel.
We need more uniformity if we are ever going to get the point across.
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Dave
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Re: Episodic cycle scale
« Reply #2 on: May 13th, 2006, 3:26pm » |
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What are you talking about Chewy?????
Can you tell me what wheel is this reinventing?
Which point is it that we are supposed to be getting across? And to whom?
I have no idea what you are talking about.
on May 13th, 2006, 3:13pm, chewy wrote:Don't need to re-invent the wheel.
We need more uniformity if we are ever going to get the point across. |
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chewy
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We have a KIP Scale. Good enough.
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Jonny
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Re: Episodic cycle scale
« Reply #4 on: May 13th, 2006, 3:54pm » |
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on May 13th, 2006, 2:12pm, Dave wrote:| Level 5 Cycle: Pain for months and little you can do about it. Life really sucks. |
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Level 5 for 30 consecutive years....non-stop!
Opps, sorry, is this for episodics only?
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Margi
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Re: Episodic cycle scale
« Reply #5 on: May 13th, 2006, 5:08pm » |
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I'd say my husband has only ever had Level 5's, if cycles are to be graded (which I don't think you can, really). By your scale, a 1 is just a rogue attack. If 2, 3 and 4 really work for you....is it really a cluster cycle at all? Mike's been the same since day 1. Sure the early days weeks of a cycle are milder but they all end up to be 5's when nothing works, only time makes the cycle go away eventually.
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kathy copelin, ch.com 8/8/06
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chewy
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Why would you bother to grade a cycle anyway? Whats the benefit?
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Richr8
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Re: Episodic cycle scale
« Reply #7 on: May 13th, 2006, 5:39pm » |
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All the same here. Hi 5's and they all suck. Fourteen years straight.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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BikerBob
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Re: Episodic cycle scale
« Reply #8 on: May 13th, 2006, 6:29pm » |
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on May 13th, 2006, 3:54pm, Jonny wrote:
Opps, sorry, is this for episodics only?
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Does jonny's spelling and pronunciation of the word "oops" as "opps" seem somewhat bizarre? I've seen him spell oops as opps many times. It's almost as bizarre as his sentences that start with "Gee,"
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Jonny
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Re: Episodic cycle scale
« Reply #9 on: May 13th, 2006, 6:53pm » |
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on May 13th, 2006, 6:29pm, BikerBob wrote:
Does jonny's spelling and pronunciation of the word "oops" as "opps" seem somewhat bizarre? I've seen him spell oops as opps many times. It's almost as bizarre as his sentences that start with "Gee,"
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You keep practicing on the honda 350 biker boy and I will keep up my "Opps" 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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BobG
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Re: Episodic cycle scale
« Reply #10 on: May 13th, 2006, 7:21pm » |
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I have to go along with Margi. The scale 1 rogue attacks are something I get quite often. Having just one headache is not a cluster, it's just a fluke.
For the last 6 years or so I've had clusters (cycles) of shadow headaches, KIP 2 or 3 level for 8 to 12 weeks duration. Are these cycles or clusters? I don't like to call them that for simple reason that they are more just irritating than anything. And not fair to be called a cluster when others are suffering KIP 9 and 10s for months or years at a time. They are true Cluster Headaches but not at a level worth bragging about.
My opinion is, we have the KIP scale. Let's just stick with that.
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Dave
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Re: Episodic cycle scale
« Reply #11 on: May 13th, 2006, 10:40pm » |
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In my early 20's, after going to many doctors with the symptoms of cluster headaches, I was finally diagnosed by a neurologist with cluster headache syndrome. It's an old story that many of us can relate to.
But here's the difference. Being in the midst of a cycle, the neurologist prescribed 240mg/day Verapamil. The Verapamil worked wonders within a few days. I stayed on the Verapamil, and at the time, not even a beer could bring on a CH attack.
For almost 10 years, every time the CH's came, I went on the Verapamil. The verapamil would work. If I stopped the verapamil too soon, the CH's would come back, and I'd go back on it, and the CH's would go away again.
All "Level 2's" from the day I was diagnosed for about 10 years!!!!
Some might ask if this is really CH syndrome... Believe it or not, YES, this is still cluster headache syndrome. CH syndrome comes in all shapes and sizes. Different people's experience of CH syndrome can be very different, and very different throughout the course of one's own life.
And in a significant percentage of the time with a significant number of people, medications and abortives like O2 do work. That is why they are prescribed.
Now I have also had episodes since then where it breaks through the verapamil, "level 3's and 4's." And then it's a race to find other medications that work.
The pain varies from night to night. I might have a kip 8 night followed by a kip 2 night during and then the prednisone/verapamil cocktail kicks in. But it's the overall strength of cycle and it's responsiveness to medication that I care about. This is what differentiates one's overall experience with CH syndrome in comparison to others'.
If I only experienced level 2's, I probably wouldn't bother to come on this site very much because I would consider it just a nuisance condition that requires I take a pill. I am sure there are many people who have never experienced more than a level 2. Many of these folks probably do not think enough of CH to come on this site. But it is still CH syndrome according to medical diagnosis.
Here's my final point. I do think it's an interesting question as to what makes cycles stronger and weaker. Strength of cycle can change during periods of your life, and I do think we will discover the stimulus that causes this to be true. I do believe that the beast can be tamed. The key to this may be in what changed when someone's cycles became stronger or weaker.
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MJ
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Re: Episodic cycle scale
« Reply #12 on: May 14th, 2006, 3:00am » |
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Hi Dave
The Kip scale is a good way to describe a level of pain and we all have to insert our own modifications.
I understand that you want more out of the scales.
For determining many things such as value of treatments, intensity, duration and variations day to day and year to year, etc. the kip scale falls short.
Clusterbusters has an expanded point scale that combines the KIP scale, can be usefull. Very simple to use.
http://www.clusterbusters.com/tracker.htm
The point scale would show differences in your scales as well. Last time I used it I was a level 5, kip10, 100,000 pointer. Using the point scale I was better able to see what was happening to me.
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MJ
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