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Tips for CH Sufferers (Read 45421 times)
JustNotRight
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Re: Tips for CH Sufferers
Reply #50 - Jul 11th, 2010 at 9:08am
 
To help avoid those nasty night time hits you can take a Melatonin about 1 hour before sleep if that doesn't work for you as it didn't for me (but it does for many others) you can try an over the counter allergy pill such as Zyrtec (generic form is Cetirizine) to help avoid a night time hit.  This has helped me avoid many a beastly night.

**Make sure you check with your doctor about allergy med. interactions with your CH prevents first.


Edited to add another tip I'd forgotten to include.
Grin

P.S.

Feel a milder CH hit coming on ? 
Try Deep Breathing, I Mean REALLY DEEP BREATHING.  Breath in Deep and exhale all you can and repeat. Make sure you are sitting up straight or standing up straight when you do this. 

This helped to post-pone or avoid a few CH hits.  Helps when you are putting in air conditioners with help from your son and you are in no position to go running for O2 or Trex.  Shocked
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« Last Edit: Jul 11th, 2010 at 9:24am by JustNotRight »  

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Re: Tips for CH Sufferers
Reply #51 - Sep 2nd, 2010 at 10:09am
 
Hi Everyone:) My fiance suffers from Cluster Headaches - he has done so for the last 8 years! and was only diagnosed properly last week with the 2nd neurosurgeon that he has seen. He used to get them once a year around April / May and for a few weeks - all of sudden he has them now again in August and has had them every day for the last 2 weeks which we know know means he is chronic!

We have been so frustrated and the 'Beast' is starting to take it's toll on our relationship, finances and outlook on life - we are getting married next month and this is supposed to be a happy time for us - but it's a nightmare! Poor Ash is suffering so badly and we are so frustrated that nothing seems to help him - I feel so helpless and he feels like a burden - it's terrible!

He has been on Medrol (we are in South Africa) which is the cortisone based med - it helps in intense doses but he can't take it indefinitely, he has also tried Sibelium - calcium channel blocker & Maxalt which haven't helped AT ALL! The only thing that does help immediately are the Imigran injections which he has learnt to divide one injection into two to save money - problem is is that he's now getting at least 2 or three headaches a day and his poor arm is bruised and sore from injecting plus it's not good for him as he has high blood pressure and the Imigran raises it. The doc is now going to give him a higher dose of Medrol 16mg which he says should help with this chronic period. He has also tried 100 pure Oxygen at 8l per minute and it didn't help either.

He also went to a chiro today who put those deep tissue massage machines on him and we are going back on Mon & Fri next week for more treatments and to test over a 2 week period if it helps at all. Ash being a fireman does put alot of strain on his spine and back and the chiro will help to alleviate some pain for him we hope!!!

In any case it is wonderful to know  (and he is relieved) to know that he is not the only one and that others understand his crippling pain. Thank you all for your advice and good luck to you all - my heart bleeds for you  :-[

Will keep you posted! Gaylene & Ash - KZN - South Africa
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Re: Tips for CH Sufferers
Reply #52 - Oct 11th, 2010 at 7:29am
 
I stopped using the imitrex years ago due to the rebound headaches that often accompanied the imitrex dose. Also in my experience I found that the imitrex also prolonged the duration of the migraines. On the imitrex I would have episodes of CH for 6-8 weeks at a time. Once I got off the imitrex the duration went down to 2-3 weeks a year. To date the most effective thing I have found to work is bronkaid tablets containing ephedrine. They are relatively cheap and tend to knock the CH down rather quickly.
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Re: Tips for CH Sufferers
Reply #53 - Oct 11th, 2010 at 5:29pm
 
well, this is my first time on this site..i didn't spend much time navigating...but i hope that this msg would help.
in short, i've been suffering from episodic cluster attacks for the past 10 years....4-6 weeks/year....1-2hrs/day.
i've tried 'solpadeine' in the past few years (a combination of paracetamol, caffeine & codein phosphate)...it works only as a treatment (not for prevention)....it works sometimes and sometimes not.....
after my attacks started this year (mid september) i tried drinking nescafe the first thing each morning, then in mid-day in an attempt to increase the caffeine concentration in my blood....
surprisingly...the attacks started skipping days instead of coming everyday like usually.....and when they come, they would stay for a shorter duration (45 minutes instead of 90)..... so, in short, the attacks became less frequent....infact...yesterday and today where attack-free.
i hope u get this msg whoever u r....and i hope that u can help me spread it..who knows..maybe this can help u and others to get relieved from this unbearable pain that i never thought that something like it can exist.
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Re: Tips for CH Sufferers
Reply #54 - Oct 11th, 2010 at 7:11pm
 
mostafa wrote on Oct 11th, 2010 at 5:29pm:
well, this is my first time on this site..i didn't spend much time navigating...but i hope that this msg would help.
in short, i've been suffering from episodic cluster attacks for the past 10 years....4-6 weeks/year....1-2hrs/day.
i've tried 'solpadeine' in the past few years (a combination of paracetamol, caffeine & codein phosphate)...it works only as a treatment (not for prevention)....it works sometimes and sometimes not.....
after my attacks started this year (mid september) i tried drinking nescafe the first thing each morning, then in mid-day in an attempt to increase the caffeine concentration in my blood....
surprisingly...the attacks started skipping days instead of coming everyday like usually.....and when they come, they would stay for a shorter duration (45 minutes instead of 90)..... so, in short, the attacks became less frequent....infact...yesterday and today where attack-free.
i hope u get this msg whoever u r....and i hope that u can help me spread it..who knows..maybe this can help u and others to get relieved from this unbearable pain that i never thought that something like it can exist.

     Not a treatment that I would recommend.  You need to peruse this site a bit more.

               Potter
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Re: Tips for CH Sufferers
Reply #55 - Oct 11th, 2010 at 9:11pm
 
Hi GayleneD,

You also need to follow Potter's suggestion to peruse this site a bit more, particularly the oxygen info on the 1st page of "Medications, Treatments, Therapies." Many, actually most, sufferers get their best relief from O2; 8L/min isn't nearly enough though. If the next Medrol dose-pack, at the new higher dosage doesn't work, stop using it; prednisone is really hard on your body. Congratulations on your coming marriage.

Hi mostafa,

Many here find high-caffeine energy drinks (e.g., Red Bull) to be very effective, far more so than coffee. You should also read the O2 information suggested to GayleneD. Please don't use the narcotics; they're almost universally ineffective in CH treatment and so dangerous.

If either of you, after trying the suggestions on this website, are unable to find relief, go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Many are finding relief using their methods. A good introduction is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Ron
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Re: Tips for CH Sufferers
Reply #56 - Feb 10th, 2011 at 3:24pm
 
bonkers wrote on Oct 11th, 2010 at 9:11pm:
Hi GayleneD,

You also need to follow Potter's suggestion to peruse this site a bit more, particularly the oxygen info on the 1st page of "Medications, Treatments, Therapies." Many, actually most, sufferers get their best relief from O2; 8L/min isn't nearly enough though. If the next Medrol dose-pack, at the new higher dosage doesn't work, stop using it; prednisone is really hard on your body. Congratulations on your coming marriage.

Hi mostafa,

Many here find high-caffeine energy drinks (e.g., Red Bull) to be very effective, far more so than coffee. You should also read the O2 information suggested to GayleneD. Please don't use the narcotics; they're almost universally ineffective in CH treatment and so dangerous.

If either of you, after trying the suggestions on this website, are unable to find relief, go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register. Many are finding relief using their methods. A good introduction is Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.

Ron

Thx so much for the tips
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Re: Tips for CH Sufferers
Reply #57 - Feb 11th, 2011 at 2:22am
 
Inrelation to the LSD treatment by Clusterbusters which is the eating of dry mushroom, the this appear in a different form such as capsule? If yes, where can I get I get it?
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Re: Tips for CH Sufferers
Reply #58 - May 1st, 2011 at 2:45pm
 
I tried butterbur 3 nights ago, in the middle of a 6 week 9/10 kip scale episode.

The last 3 nights have been a 4 at worst.  The relief to go from a nightly off the chart CH to a 4...

Still apprehensive to believe an herb can make such a difference after 25 years, and not finding anyone else who has tried it, but I can't help but to admit the undeniable relief.
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Re: Tips for CH Sufferers
Reply #59 - May 16th, 2011 at 8:45pm
 
i've been on maxalife fish oil capsules to alleviate symptoms. so far the intensity and frequency of my headaches have lessened. Smiley
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Re: Tips for CH Sufferers
Reply #60 - May 17th, 2011 at 9:24pm
 
OMG! thanks for the tip on caffiene you saved me a trip to the ER! the attack was less than 15 minutes! wish i would have found this site last night and i had a attack last over 7 hours on and off! resulting in a trip to the ER! cant wait for that bill as i have no insurance.
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Re: Tips for CH Sufferers
Reply #61 - Jul 30th, 2011 at 9:15pm
 
I have just come out of a 3month plus period of the most vic iouse attacks i have ever had! I like many of you other guys
and gals tried O2 and i have mixed feelings about how effective it is. I found that I had to be on the  O2 at the first sign of a CH for it to work -once the headache had started it was useless The neurologist told me not to use it for more than 15 minuets as if it has not worked by then it wasn't going to and would would make the headache worse.

I like alot of people here find an ice pack helpfull and always have one in the freezer I also keep away from bright light  as i have discovered harsh light trigers an attack and so wear very dark glasses Ok so I look like cousin IT of the Adams Family but it helps.
many people on this site are talking about imitrex (known
as Imigran in Europe) my neurologist told me not to over use it as their is growing evidence that it could turn the condition chronic-anyone else heard anything? I would love to hear from you
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Re: Tips for CH Sufferers
Reply #62 - Jul 30th, 2011 at 9:21pm
 
Quote:
...and would would make the headache worse.

I've never found this to be the case. From time to time it didn't help - usually my fault for not getting on it soon enough. But it sounds to me like your neurologist knows not of which he speaks.
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Re: Tips for CH Sufferers
Reply #63 - Jul 31st, 2011 at 12:54am
 
gezz wrote on Jul 30th, 2011 at 9:15pm:
I like many of you other guys
and gals tried O2 and i have mixed feelings about how effective it is.


Are you using a non-rebreather mask?

What flow rate?

Have you read the oxygen info on the left?

Using it at the start of an attack I can abort a CH in about 6 minutes using a non-rebreather mask and a flow rate of 25lpm. If I use 15lpm it's almost twice as slow.
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Re: Tips for CH Sufferers
Reply #64 - Aug 1st, 2011 at 11:56am
 
This is my first time on this website.  I have suffered with these for about 25 years and for me, the relief has come through exercise.  At the first sign of the attack, I go for a run if possible.  As my pulse increases and I start to get out of breath, the pain starts to ease.  Within 5 minutes of the onset it is completely gone.  If I can't run, I will do 25 to 40 "squat-thrusts".  This is usually enough to increase my pulse and breathing adequately to bring about an end to the pain.  I am sure this won't work for everyone, but I honestly don't know how I would have coped with the pain over the years without this relief.
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Re: Tips for CH Sufferers
Reply #65 - Aug 2nd, 2011 at 12:43pm
 
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If running helps a little bit....read this link! I used to go for an all out 30 minute sprint when I felt an attack coming on. Wouldn't kill the attack but would ramp it down several clicks. Now I crank on the oxygen, in 6-8 minutes I'm pain free!

Do you have any other meds you take while on cycle? A prevent like Verapamil, Lithium or Topomax? Imitrex injectables or nasal sprays? Are you working with a headache specialist neuro? We've seen the best results from going that route.

Welcome to the board, hoping we can help you skip some pain! Wink

Joe
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Re: Tips for CH Sufferers
Reply #66 - Aug 10th, 2011 at 7:33pm
 
Mike NZ wrote on Jul 31st, 2011 at 12:54am:
gezz wrote on Jul 30th, 2011 at 9:15pm:
I like many of you other guys
and gals tried O2 and i have mixed feelings about how effective it is.


Are you using a non-rebreather mask?

What flow rate?

Have you read the oxygen info on the left?

Using it at the start of an attack I can abort a CH in about 6 minutes using a non-rebreather mask and a flow rate of 25lpm. If I use 15lpm it's almost twice as slow.


yes I am usinng a none rebreather mask and always use O2 at 15 ltrs per min, as I say sometimes it works while other  times it has no effect at all- but we are all different and what works for some wont for others
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Re: Tips for CH Sufferers
Reply #67 - Aug 10th, 2011 at 7:46pm
 
Brew wrote on Jul 30th, 2011 at 9:21pm:
Quote:
...and would would make the headache worse.

I've never found this to be the case. From time to time it didn't help - usually my fault for not getting on it soon enough. But it sounds to me like your neurologist knows not of which he speaks.


Well the don't use it for more than 15 mins advice was not only from my neurologist but also the technician who said the same amongst the other safety advice like don't smoke for 15 minuets after using oxygen. I remember on one occasion when I had used my two permitted injections and all I had was the O2 it didn't work. I remember that day well as I had 8 attacks in 24 hours each one was violent and I was screaming in pain.
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Re: Tips for CH Sufferers
Reply #68 - Sep 26th, 2011 at 6:52pm
 
I have had these evil things for 16 years and two of them have been pain free. 4 years ago I went to an acupuncturist to see what he could do and he did the normal multiple  needles in the face routine which had little effect. I went back the next day and this time he gave me 1cc shots of Vitamin E to 2 spots along the nerve that runs along the eyebrow and 2 more shots to the nerve in the temple...I didn't have the headaches for the rest of the year. The next 3 years I had the headaches but they weren't too bad and then this year I went back and had the same thing done and so far no headaches. My headaches start between August and September and they last 3 months and I usually get 3 everyday and they each last 3 hours. I do not know if this will work for everyone but it has been a Godsend for me. Not all acupuncturists do this because they need the MD degree so see if your doctor will do it. I still use O2 as a back up and it has been excellent at relieving the pain if caught quick enough. If this works for anyone I would like to know so I can pass it along to others.
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Re: Tips for CH Sufferers
Reply #69 - Oct 7th, 2011 at 12:10pm
 
I have been looking for the O2 information and the post says "Check out the yellow "oxygen info" button on the menu bar to the left!"
I don't see a menu bar on the left.  Please help.


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Re: Tips for CH Sufferers
Reply #70 - Oct 7th, 2011 at 12:13pm
 
I have been looking for the O2 information and the post says "Check out the yellow "oxygen info" button on the menu bar to the left!"
I don't see a menu bar on the left.  Please help.


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Re: Tips for CH Sufferers
Reply #71 - Oct 7th, 2011 at 3:58pm
 
The link is - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

If you went directly to the forums then you won't see the links on the left, however going in via the Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register URL you'll always see it.

Read up and ask questions...
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Re: Tips for CH Sufferers
Reply #72 - Nov 6th, 2011 at 12:20pm
 
Hi, just wanted to share my experience with anyone who reads this message, and this was the only way I was able to - Hope I'm on the right page.

I've been a sufferer for more than 12 years now. My latest episodes just started recently 2 days ago, after a 2 year pain free period! (My personal longest - thought i was cured...). Anyway, what I wanted to say that during those 12 years, I've learned to adapt especially the last 6 years. The first 6, it's exactly as everyone described in their posts, the pain is so strong, you wish to die, crack your head against the wall, stay in dark places, never go out of the house, and chew up on the pain killers like candy... I tried everything, but it seems year on year, the episodes were becoming longer and deeper...

Just up until 6 years, I was experiencing a cluster during work, and had a very important meeting which I couldn't get out off.. imagine that, experiencing a cluster while sitting down and listening to people without moving. Anyway, I excused my self to the bathroom to see what I can do, and started banging my head against the wall and shaking, and suddenly the pain was vanishing slowly, or better yet, the piercing feeling above my eye and side of my head was being diverted, and I noticed that it was because I was moving my head in a certain pattern. I kept on doing this for around 5 min, and believe it or not I was pain free... So throughout these 6 years I was using this exercise and developed it to suit me, and believe me it has made my life easier. 8 out of 10 times, I can abort a cluster within 10-20 min and during that exercise I'm not feeling the piercing pain, just a bit psychological pain knowing the cluster and some annoyance, but who would care knowing that the cluster would end after Smiley

A sufferer knows when a cluster is about to hit, so when you get that feeling, just wait a bit until it's about to peak, and then what you do is start moving your head from left to right quickly and non-stop (and not just moving it, it has to be in a snappy way and feel it, you have to feel your neck moving with it)... This exercise normally help the cluster to peak faster, better than waiting for it, and then you feel it. So I keep going with the exercise, and moving my body as well to a song or something to divert cause we all know that helps. A dark place helps better. I always try to make a pleasant experience out of this regardless of how painful it is, and set my mind positively like I'm on a mission, fighting and dancing the cluster away. During the exercise, which is the best thing about it, you always manage to get over the piercing pain which is the best part of it. I still feel pain during and I keep going and going, it's like having a fight with the cluster, until I get over it. Many times I get frustrated and depressed and tired and want to stop, but I never gave up on this exercise, and in the end I always manage with it to end my pain. It's all about patience and fighting for relief... (personally I was living on pain killers and meds, and oxygen wasn't always availalbe, this was my personal savior).
It's been 6 years now, and knowing this exercise always made me feel better, like having a weapon ready when the time comes. (I do it wherever possible: Bathroom is where I normally end up when outside the house, the first one I can get my hands on Wink .. )
As I said, I started having the episodes 2 nights ago, non-stop up to 5 times a sleep: Always woke up, went in my dark living room, started the exercise 20 min, back to sleep, till the next episode....

Now this is my personal experience, and so far it has made my life much better... So for anyone who reads this, trust me it's worth a shot, and I really hope it works for you in a way or another. Personally I've taken a lot of shots on whatever I can get my hands on and was advised for easing the pain. We all know that the pain is to freaky not to try anything that is available. In my advised exercise, the most important thing is not to give up, cause at the end you will beat it.

I really hope my experience would help in any way, cause probably we are one of the fewest people on earth who know the true meaning of pain....
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Re: Tips for CH Sufferers
Reply #73 - Nov 6th, 2011 at 1:05pm
 
Kojak wrote on Nov 6th, 2011 at 12:20pm:
Hi, just wanted to share my experience with anyone who reads this message, and this was the only way I was able to - Hope I'm on the right page.

I've been a sufferer for more than 12 years now. My latest episodes just started recently 2 days ago, after a 2 year pain free period! (My personal longest - thought i was cured...). Anyway, what I wanted to say that during those 12 years, I've learned to adapt especially the last 6 years. The first 6, it's exactly as everyone described in their posts, the pain is so strong, you wish to die, crack your head against the wall, stay in dark places, never go out of the house, and chew up on the pain killers like candy... I tried everything, but it seems year on year, the episodes were becoming longer and deeper...

Just up until 6 years, I was experiencing a cluster during work, and had a very important meeting which I couldn't get out off.. imagine that, experiencing a cluster while sitting down and listening to people without moving. Anyway, I excused my self to the bathroom to see what I can do, and started banging my head against the wall and shaking, and suddenly the pain was vanishing slowly, or better yet, the piercing feeling above my eye and side of my head was being diverted, and I noticed that it was because I was moving my head in a certain pattern. I kept on doing this for around 5 min, and believe it or not I was pain free... So throughout these 6 years I was using this exercise and developed it to suit me, and believe me it has made my life easier. 8 out of 10 times, I can abort a cluster within 10-20 min and during that exercise I'm not feeling the piercing pain, just a bit psychological pain knowing the cluster and some annoyance, but who would care knowing that the cluster would end after Smiley

A sufferer knows when a cluster is about to hit, so when you get that feeling, just wait a bit until it's about to peak, and then what you do is start moving your head from left to right quickly and non-stop (and not just moving it, it has to be in a snappy way and feel it, you have to feel your neck moving with it)... This exercise normally help the cluster to peak faster, better than waiting for it, and then you feel it. So I keep going with the exercise, and moving my body as well to a song or something to divert cause we all know that helps. A dark place helps better. I always try to make a pleasant experience out of this regardless of how painful it is, and set my mind positively like I'm on a mission, fighting and dancing the cluster away. During the exercise, which is the best thing about it, you always manage to get over the piercing pain which is the best part of it. I still feel pain during and I keep going and going, it's like having a fight with the cluster, until I get over it. Many times I get frustrated and depressed and tired and want to stop, but I never gave up on this exercise, and in the end I always manage with it to end my pain. It's all about patience and fighting for relief... (personally I was living on pain killers and meds, and oxygen wasn't always availalbe, this was my personal savior).
It's been 6 years now, and knowing this exercise always made me feel better, like having a weapon ready when the time comes. (I do it wherever possible: Bathroom is where I normally end up when outside the house, the first one I can get my hands on Wink .. )
As I said, I started having the episodes 2 nights ago, non-stop up to 5 times a sleep: Always woke up, went in my dark living room, started the exercise 20 min, back to sleep, till the next episode....

Now this is my personal experience, and so far it has made my life much better... So for anyone who reads this, trust me it's worth a shot, and I really hope it works for you in a way or another. Personally I've taken a lot of shots on whatever I can get my hands on and was advised for easing the pain. We all know that the pain is to freaky not to try anything that is available. In my advised exercise, the most important thing is not to give up, cause at the end you will beat it.

I really hope my experience would help in any way, cause probably we are one of the fewest people on earth who know the true meaning of pain....

You've been a member for over a thousand days,  you've made one post and this is your way of coping?

   Stick around and get educated.  There are way better ways to gain relief.  Oxygen in particular.

                 Potter
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Re: Tips for CH Sufferers
Reply #74 - Nov 6th, 2011 at 6:54pm
 
Cluster Headaches is not all about education Potter. Everyone has his own way of coping. Been a sufferer long enough to try everything, and this is what worked out for me so far. Just sharing my experience for people who might find it useful, at least until Bob Wold makes it for all of us.
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