These I think may be helpful to people new and old, I hope maybe to see them with KIP scale as additional help to newcomers.
Mike


Helpful Hints

•      At each level of the Kip scale see prior and add to where you are.
•      Most attacks last from 15 min. to 3+ hours.
•      O2 is a valid and preferred treatment at most levels of pain to end(abort) a Cluster Attack sooner. Usually administered at 10-15 lpm with a Non re-breather mask.
•      For most it is also necessary to use Imitrex injection. see "imitrex tip"
•      Most oral meds and inhaled meds will not affect the attack you are in now, but if taken prior to attack may result in some relief.
•      The Levels listed here are a guideline to measure the intensity of an attack.
•      For most the attack ramps up rapidly and subsides almost as fast, but it may take several hours to recover from it. Very energy draining.
•      Caffeine and Red Bull may also assist in aborting an attack.
•      Most Cluster Headache sufferers are misdiagnosed for many years, some with sinus headaches, tension headaches, migraines, and even toothaches/infections.
•      Cluster headaches can and often are accompanied by other types of headaches, Sinus, Stress, Migraine, and others making it hard to detect and/or diagnose.
•      Cluster Headaches are real and should never be considered a minor inconvenience,  The cause is still being debated but there is no known cure as of yet.
•      Remember you are the one suffering, don’t let others tell you how much it doesn’t hurt!
•      Shadow; some of the symptoms but without a measurable amount of pain(pressure).
•      Twinge; Short burst of pain usually to fast to produce side effects.
•      Phantom; Body experiences all symptoms of an attack without measurable pain/burning sensation. (Droopy eye, Running nose, and Tearing.)
•      Episodic; Episodes of Cluster headaches that are under 1 year in length, or with 30 days or more during a calendar year of being Pain Free.
•      Chronic; Episodes of Cluster headaches that are over 1 year in length, or with less than 30 days during a calendar year of being Pain Free.
•      There are various methods and treatments, both conventional and non-conventional. Overall it seems Oxygen at a higher rate while using a Non re-breather mask seems to be the most effective abortive.
•      Some people experience Cluster attacks as a result of a trigger ie. alcohol, smoking, foods, ect…
•      Never let a doctor, or other medical professional dismiss it as psychosomatic, or imagined pain.




In Honor of Robert(Bob) Kipple who passed on the day this was posted. God Bless his work and Thank You Kip for being. May all who enter this site know the name Robert Kipple and find comfort with knowing he found for us a common ground. He passed peacefully in his sleep on 2/20/06.


The groundwork he laid before us,
the rest we must carry on.
Heaven has called up,
today a beloved son.
Pain in his life he knew,
but compassion he delivered.
For those of us that knew him,
knew he would have had it no other way.
Pain for most of us is a reality of life,
To be pain free a dream, but a dream we must realize.
Those he has helped and those will help still,
Remember Robert Kipple for all of us, forever will.

Mike 2/21/06
In Memory of Robert (Bob) Kipple Creator of the KIP Scale. We love you KIP!

2/22/06 - DJ edited subject of post

This is Great Stuff Goat!

It should be called "Mike's Helpful Hints".

DJ I want to seriously petition that this great store of information be added to the Kip scale on the left.

When new people enter the board this will give them better insight in most of the frequently asked questions related directly to their pain scale.

I ask of others on this board to please support this idea.

Jasmyn wrote on Feb 20^th, 2006 at 5:02pm:

This is Great Stuff Goat! It should be called "Mike'sGoats Helpful Hints". DJ I want to seriously petition that this great store of information be added to the Kip scale on the left. When new people enter the board this will give them better insight in most of the frequently asked questions related directly to their pain scale. I ask of others on this board to please support this idea.

There Fixed it!

...I frequent have FAQ areas where this would fit nicely, along with a number of other commonly asked/answered questions and facts. These are very useful to newbs and more so for vets as they do not have to answer the same questions over and over.


Rich

Quote:

DJ I want to seriously petition that this great store of information be added to the Kip scale on the left. When new people enter the board this will give them better insight in most of the frequently asked questions related directly to their pain scale.

I agree with Jasmyn 100%, and thank Ghost for posting it!

Dragn

I think this is very important for the board so I'm bumping it.

DJ: I agree with Jas.

Goat I'm impressed, thats a fantastic post and I too think it's worth pinning or saving or whatever has to be done with it, well done matey!  :-*

   Jeeeeze.  The old Goat did something good?????????

will wonders never cease.

Linda

BUMP

Jas or Ghost - did you email/PM Deej to ask him to sticky this or include it in the links to the left?  That's the best way to get his attention to this stuff!

Nice work, Ghost!!!  Provides some very clear statements that would definitely help to answer a lot of the more common questions.  :)

Hugz,
Carrie :)

Thanks Carrie for the advise, did so now  :)

I agree with the others. :)

Fantastic job Mike!

Thank you DJ for pinning it up here ;;D

:'(
Rest in Peace Kip. [smiley=bow.gif] Prayers and condolences [smiley=bigcry.gif]
jb
Thanks for the post Ghost. He will be sorely missed here.

Great post Mike, and thanks Deej.

Thank you Bob for all that you've done for us. I know we shall meet again my friend, this I will promise you. May you find comfort Janet knowing he's in Gods arms.  

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Much love and blessings to you all,

The Clancy family..................................

Great post, Mike! :)

Sanna

P.S. I love that country song, Sean. :)

Nice work Ghost and in memory of one I never knew in person but through pain we knew him well. His name will live on.
Rest well Mr. Kipple.

Thank you kip for sharing your knowledge with us,
rest in peace.
bluebrain

Well Done,
Diffently a gem.
Rest in peace Kipple....
llreed

Thank you for this. It helps me as much as it will help Stuborn, I think and I hope.

very helpful. please bump it.

Definitely helpful to us newbies.

So sorry to hear of Mr. Kipple's passing.  Hope he was pf long before he didn't wake up.  

Good post, but have to disagree with:


Quote:

•      For most it is also necessary to use Imitrex injection.

Imitrex is generally very effective, but has a significant side effects profile and may actually increase the frequency of hits and the length of a cycle.  Imitrex is one option to consider, but it is wrong to call it something most people Need.

Floridian wrote on May 4^th, 2006 at 2:08pm:

Good post, but have to disagree with: Imitrex is generally very effective, but has a significant side effects profile and may actually increase the frequency of hits and the length of a cycle.  Imitrex is one option to consider, but it is wrong to call it something most people Need.

Damn!, as much as I hate doing this......Flo, has a good point.  :P

Floridian wrote on May 4^th, 2006 at 2:08pm:

Good post, but have to disagree with: Imitrex is generally very effective, but has a significant side effects profile and may actually increase the frequency of hits and the length of a cycle.  Imitrex is one option to consider, but it is wrong to call it something most people Need.

I too agree that is why it says(which you forgot)
For most it is also necessary to use Imitrex injection. see "imitrex tip"

So it would be clarified as the tips state to see a doctor and for some it does cause those and other side effects. Please Read all of it dont paraphrase it can cause harm, just as only following half advise from a good neuro can be more harm than help. Also as I should have stated, Find a good Doctor and follow the treatment. Relief may be slow at times but if followed correctly you usually will get the relief needed to make it through each and every day a little better. Although sometimes you may not.

Mike

Ghost wrote on May 5^th, 2006 at 11:02am:

I too agree that is why it says(which you forgot) For most it is also necessary to use Imitrex injection. see "imitrex tip" So it would be clarified as the tips state to see a doctor and for some it does cause those and other side effects. Please Read all of it dont paraphrase it can cause harm, just as only following half advise from a good neuro can be more harm than help. Also as I should have stated, Find a good Doctor and follow the treatment. Relief may be slow at times but if followed correctly you usually will get the relief needed to make it through each and every day a little better. Although sometimes you may not. Mike

I think we are coming from different positions. (?!")  Here are the 3rd and 4th tips:

•      O2 is a valid and preferred treatment at most levels of pain to end(abort) a Cluster Attack sooner. Usually administered at 10-15 lpm with a Non re-breather mask.
•      For most it is also necessary to use Imitrex injection. see "imitrex tip"

Reading those, in that order, it sounds like you are saying most people need an imitrex chaser for the oxygen.  I don't agree with that, and after reading your follow up, I'm not sure if you meant that ... were you saying that most people who use oxygen to abort also need imitrex injections??

Oxygen is very effective for many people, leading to rapid and complete abortion of the headache.  For others, it turns down the pain enough to be tolerable. And for some, it works poorly or not at all. I think it is innacurate to say that oxygen is insufficient "For most."  And if oxygen is not satisfactory, imitrex is an option, but is not necessary.      

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I think this is very important for the board so I'm bumping it too.

;;D  Job well done...proud of you, and thank you...  [smiley=hug.gif] Summer

thank you so much for this.  as a newbie to the board this was extremely informative.  i believe what i've dealt with the past week were all twinges...leading up to last night.  (OWWW!)  i never would've guessed that red bull (or other large doses of caffeine) would be helpful.  i wonder if that's how i've suppressed this bugger all week.  i ran out of red bull the day before yesterday and BAM!  i generally keep a stock of red bull in order to fight off my migraines but if it helps with clusters, omg, i'm buying stock!  thanks so much for the pointers.  3 cluster attacks in 6 hours is just too much to bear.)  ~sarah

Is anyone finding that O2 is not working for them? :-[

awesome ed vise!it really helped!








    Santa ;;D

Thanks for the exce..ent post.  

My condolences to the Kipple family and loved ones.  You will be in our prayers.

Jerry

I can identify with almost all of this.  What about water? Does drinking water  alot of water do anything good for attacks?

Dunnie_work wrote on Mar 20^th, 2007 at 8:04pm:

I can identify with almost all of this.  What about water? Does drinking water  alot of water do anything good for attacks?

For some yes for some no it like all the rest is individual and may vary case by case. Hope it works for you but for me it did nothing.

Mike

hi--this is my first time here. 20 years with cluster headaches and still no cure (if there is one).  in one of the cycles right now; no health insurance at my current job.  any "natural" solutions?

baadpuddytat wrote on Mar 23^rd, 2007 at 1:39am:

any "natural" solutions?

Charlie has a method of redirection that works for some.  I am sure he will come here and post it.

Have you looked at the "water X 3" tab, over in the left margin?

Another trick, that works for some is hyperventilating.  Do it until you feel dizzy, and even your fingers tingle.  What it is doing, is forcing an excess of oxygen, from the ambient air, into you body.   Try it, it might work for you too!

Good luck!!

Chuck

maybe you could also try melatonin,  you can get it at the drug store and some people find some relief with 9-12mg before bed.  good luck

chrisw

Sorry for the delay but here is the natural solution post that has worked well for me and others:


                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

Hi Charlie,

Interesting post about redirecting blood flow

If you can change the blood pressure in the scalp, or the brain to a much lesser extent.....

Obviously ligating a superficial artery has a similar effect on extra and intra cranial pressure

I, of course, would never advocate that type of barbarism!

Cheers
Danny

i'm new to this amazing site as from yesterday.  i read all the tips etc before i came to the message boards and found the tips etc very informative.  i would certainly say it's definatley worth putting this in with one of the tips for sure!  It would definatley have helped out a bit more.  i'm struggling will the fountain of info i've found here from the posts and could've done with this in with the tips.  purely so icould get my head around it before i read what people have posted.
brilliant post x

never been on a forum before & i'm likely in the wrong area to share what i have to say. i haven't ventured very far in the forum...yet.  i may be repeating what others have already said here, but if what i did tonight could help anyone at all, it was worth my time registering into the forum....i've been through the headaches intermitantly for years, & tonight, ten minutes into a major headache, i decided to "safely" grab some weights & work-out like a mad man. within 5 minutes the pain was gone. i certainly didn't feel like doing it at the time but i knew i had to do something because nothing else i've tried seems to help. if you find yourself in panic mode & haven't tried this yet, please do. likely any heavy exercise will do. not sure how long till the next one hits & not sure how many times i'll have the energy to do this, but it was well worth it & i'll definitely try it again if it gets unbearable.

I just want to thank all of you and this great site. I am new to this painfull monster and any help I can get is wonderfull.

One of my girlfriens suffered headaches from 1989-2006 on a daily basis. She was totaly disabled by them. She found out that there are a hand full of international healer with special healing gifts. She had two distance session with one & her headaches disappeared completely & have not returned. As we foung out there are three different healers, Bob Ward Healer , Gene Egidio & Lorenzo Cree. Bob W is the one my girlfriend went to . I went to him for my migraines  & now I no longer get them
k

Wardland97 wrote on Oct 28^th, 2007 at 1:42pm:

One of my girlfriens suffered headaches from 1989-2006 on a daily basis. She was totaly disabled by them. She found out that there are a hand full of international healer with special healing gifts. She had two distance session with one & her headaches disappeared completely & have not returned. As we foung out there are three different healers, Bob Ward Healer , Gene Egidio & Lorenzo Cree. Bob W is the one my girlfriend went to . I went to him for my migraines  & now I no longer get them k

                How did we miss this loon?

        Potter

 Profile says he's from Bonkers, NY

 Yep, that's about right.

I just signed up. and this has helped with some questions I've had. a lot! It is very difficult when someone makes you feel like the pain isn't as significant as it really is...and its very significant. I hope I can learn more here. Hoping to figure out how to stop these headaches soon. Nothing has worked for me, and they seem to be coming more frequently and more severe.  :-/

thanks for the hints!

-erica

I’ve included some photos of a disposable Non-Rebreather (NRB) Oxygen Mask, Clustermasx and M-size O2 cylinder with click style constant flow regulator, a Clustermasx configured with a mouth tube, a Western Medica flowmeter type constant flow O2 regulator with a CGA-540 Nut & Nipple fitting for use with the larger (M/H/K) oxygen cylinders, and an adapter that will let you use the same CGA-870 Yoke type constant flow O2 regulator on both E and M-size O2 cylinders.  

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NRB O2 Mask – Thomas gave you a good link where you can order these.

You’ll note arrows pointing to the two exhaust flapper valves in the photo above.  Both of these silicone rubber flapper valves must be present or room air will enter the mask and the oxygen inhaled will be diluted to the point it will not work as an abortive to stop the pain of a cluster headache attack.  

If possible, place the order by phone and ask for two. Make sure you tell them to ensure both exhaust flapper valves are present before you agree to buy them. They come in a clear plastic bag so if you buy two locally, inspect them carefully for the presence of both valves before you accept them.  Most NRB O2 masks come from the factory missing at least one and sometimes both of the flapper valves.  If you can get two, there’s a good chance you’ll have a total of two flapper valves to configure one NRB mask correctly.  

As a safety note, make sure you remove the green elastic strap from the NRB O2 mask.  All masks used for oxygen therapy to abort cluster headache attacks should be held in place by hand.  It’s very easy to fall asleep after aborting a painful attack.  If the mask fits tightly and both flapper valves are functioning properly with the mask held in place by the elastic strap, you could run out of O2 and that would not be good…  That is also why many suppliers of this mask ship it missing at least one valve.

-------------------
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Clustermasx – Mouth Tube Configuration

Masks like these are hard to find here in the US but they are available over the internet.  They cost more ($25 - $30 USD) but are reusable and provide a much better fit. They come in a kit with a mask and other spare parts like reservoir bags and valves.

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Clustermasx – Face Mask Configuration

This photo also shows a Click type constant flow regulator attached to an M-size O2 cylinder.  If you have more than four attacks a day/night, you’re better off ordering the larger M-size O2 cylinder.  I was going through an E-size O2 cylinder every day using a 25 LPM O2 regulator.  The M-size cylinder lasted more than a week at 15 to 25 LPM using a CGA-540 flowmeter type constant flow O2 regulator like the one shown below.

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Flowmeter Type Constant Flow O2 Regulator (Western Medica)

I’ve used one of these regulators with a Clustermasx for almost two years and they both work great. You adjust the flow rate with the needle valve at the base of the sight gage.  It will deliver O2 flow rates well above 15 LPM by opening the needle valve to the “Flood Mode.”

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CGA-540 to CGA-870 Post Valve Adapter

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CGA-540 to CGA-870 Post Valve Adapter on M-size O2 Cylinder

This is a very handy adapter to have in your oxygen therapy kit.  With one of these adapters you can use the same CGA-870 Yoke type constant flow O2 regulator (shown below) on the smaller E-size O2 cylinders while on travel and also at home on the larger (M/H/K) size O2 cylinders. You can find one of the CGA-540 to CGA-870 Post Valve Adapters at the following URL:

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CGA-870 “Yoke type” 0-25 LPM Constant Flow O2 Regulator

A 25 LPM regulator like this cut my abort times dramatically while I was using my E-size O2 cylinders away from home.

Hello guys.

I'm a health journalist in New Mexico working on a story about cluster headaches for my paper.

If there's anyone in the New Mexico or El Paso, Texas area who currently suffers from cluster headaches, and would be up for a short fifteen to thirty minute interview on the subject, I'd love to talk to you.

My e-mail address is: torrey-dot-meeks-at-gmail-dot-com.

All the best.

email sent, Torrey.  :)

nani, in NM

Hello, I'm new(not new to roadkill headache pain though!) I want to ask  the following:

Are any of you on the autism spectum,as I am?

I don't find topamax listed as a preventative very often.  I was on it for 5 yrs, up to 500 mg a day. Weaned myself off a few months ago, but the number of my ch's haven't decreased.

Has anyone been taking topamax or diagnosed as having temporal lobe seizures(what I was prescribed for)?

I take Midrin, an old headache RX as an abortificant; it helps most of the time AND it is CHEAP. Anyone else had success with this?

Hint:  During an attack I often use a q-tip loaded with a gob of white Tiger Balm up the nostril of my affected side; this often helps and surprisingly, doesn't burn.

Well, I hope to figure out soon how to add a photo and some personal information to introduce myself properly.

By the way I gave up Imitrex shots years ago; I called it the drug from hell as it felt like I was being scalped after I administered it.

What's an autism spectum?

Can't tell you if I'm on it if I don't know what it is.

I used Midrin for several years, and it worked fabulously, but then stopped, as many other cluster wonders do.

What's with the white Tiger balm?  That's fascinating.  What can you tell me about it?

judyjudyjudy wrote on May 15^th, 2008 at 12:57pm:

I used Midrin for several years, and it worked fabulously, but then stopped, as many other cluster wonders do. What's with the white Tiger balm?  That's fascinating.  What can you tell me about it?

1.  I loved using Midrin.  It worked a decent part of the time, plus it helped my migraines also.  But I can't seem to get a doc to write it now.  It didn't work during the peak of my cycle though

2.  Where the heck can I find Tiger balm?  I have used it once, someone had some and let me try it.

ak_baumgard wrote on May 13^th, 2008 at 9:14am:

Hello, I'm new(not new to roadkill headache pain though!) I want to ask  the following: Are any of you on the autism spectum,as I am? I don't find topamax listed as a preventative very often.  I was on it for 5 yrs, up to 500 mg a day. Weaned myself off a few months ago, but the number of my ch's haven't decreased. Has anyone been taking topamax or diagnosed as having temporal lobe seizures(what I was prescribed for)? I take Midrin, an old headache RX as an abortificant; it helps most of the time AND it is CHEAP. Anyone else had success with this? Hint:  During an attack I often use a q-tip loaded with a gob of white Tiger Balm up the nostril of my affected side; this often helps and surprisingly, doesn't burn. Well, I hope to figure out soon how to add a photo and some personal information to introduce myself properly. By the way I gave up Imitrex shots years ago; I called it the drug from hell as it felt like I was being scalped after I administered it.

My nuerologist from years ago tried to give me Topamax, but I never took it when my wife found out short term memory loss is a possible side affect  :) I'm very much against pills, but I know when we all feel this kind of pain, anything will do.

I use Imitrex usually on the first sign or onset.  It knocks out the pain within 20-30 minutes if taken in time.  Sometimes I take it before bed to get a good nights rest.  This is only 50 mg.  I usually get (2) 2-3 week bouts/year.

Kipp really helped us & we never even knew him. What a legacy. Thank you!!!

Dears
very useful tips, specially for the first visitors , I also agree and vote to save this very useful tips and support the idea to keep it.

regards

Fazrad

Topamax never worked for me, Imatrex also made things worse in my head, but i could have had it too late into the ache too?! Midrin was wonderful, but it also has stopped working.   You arent alone. What is the balm?

Dear OP,

Thanks A LOT for the hints!

Based on my CH knowledge, these hints ARE actually useful.

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You can get Tiger balm at some pharmacies, or, at that link to Amazon.com

here's what i do when ivegot no meds, ice back of neck you know the spot/10 min rarely that kills it/ then hot hot shower on the head intermittent with just relaxing withwater hittingmyback/ then usually 5 10 min back on the ice. just did it and I only got to about kip 4

[quote author=77787F63642622100 link=1140471647/0#0 date=1140471646]

•      Twinge; Short burst of pain usually to fast to produce side effects.
•      Phantom; Body experiences all symptoms of an attack without measurable pain/burning sensation. (Droopy eye, Running nose, and Tearing.)

These were very useful, I'm glad others get these!

Just read your message for the second time ... magnificant ... twinge is what i feel between attacks, good word for it, painful but not unbearable.

here's what i do when ivegot no meds, ice back of neck you know the spot/10 min rarely that kills it/ then hot hot shower on the head intermittent with just relaxing withwater hittingmyback/ then usually 5 10 min back on the ice. just did it and I only got to about kip 4 [color=#ff3I also use ice on my neck, yeah, that spot! and I also use it to cool me off.  I get very hot, like lava throwing thru my veins when i have CH so I am reluctant to jump into hot water.[/color]

Love this post, love it

The V.A.

This is a great site and I am sure I will become a significant contributor - I am a surgeon who has had clusters for the last 15 years but only had a proper diagnosis for the last 8 years.  The terminology works well and as a sufferer can definitely relate to shadows/phantoms etc.  I regard myself as lucky having twice yearly episodic attacks - roughly march-may/ sep-dec - but have 1. something that helps: sumitriptan 6mg s/c - and 2. a supportive wife!

While I am sorry you have the beast for a companion....it's awesome to have a voice like yours in the medical field. As you discovered in your diagnostic journey, lack of CH awareness is still one of our biggest hurdles.

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If you haven't already, take a sec and read this link. How we use oxygen flies in the face of how organized medicine feels it should be used. We have found that getting 100% 02 to the lungs, at a rate to encourage hyperventilation, will abort attacks in as little as 5 minutes. Since you probably have unlimited access to 02 at work,  ;) and there are no side effects to worry about, certainly worth a shot. Welcome to the board!


Joe

Hello and welcome Dr. J,

   If I might offer a suggestion for future postings...All the threads where we're writing right here... specifically "Helpful hints" and others are in a static or fixed area.   Most folks who have been here a while have already seen them so it gets very little exposure.   

In the three catagories of CH specific, Getting to know you & Meds, treatments & therapies..it's much better to post under "BOARD TOPICS" where it will be seen better. 

We most certainly look forward to your input on this condition we all have in common and especially from the viewpoint of a physician.  Over the years, we have had several physicians on our side, so to speak, but none that were actual sufferers themselves. 

Dr. Peter Goadsby, in fact..will be making a presentation at our annual convention again this year which will be July 14th to the 17th. in Nashville, Tn.   If there is anyway you can be there, you won't be disappointed, I guarantee it.  I'll be glad to provide more specifics if you'd like.

Linda

Dr J wrote on Jun 15^th, 2011 at 8:00pm:

This is a great site and I am sure I will become a significant contributor - I am a surgeon who has had clusters for the last 15 years but only had a proper diagnosis for the last 8 years.  The terminology works well and as a sufferer can definitely relate to shadows/phantoms etc.  I regard myself as lucky having twice yearly episodic attacks - roughly march-may/ sep-dec - but have 1. something that helps: sumitriptan 6mg s/c - and 2. a supportive wife!

I have my doubts.  Ya spelled it wrong,  it's sumatriptan.

       Potter

Thank for the info

thank you very much for this clear, concise post! it, this site and you fine people are so very helpful to all us newbies!

Glad to see someone knows what a chronic cluster headache is, mainly the duration. The problem that remains is; how does one explain to loved ones what you are going through.
motO2

:) I just spent over an hour watching my son suffer. I have not had a cluster episode in a few years now. He is in the worst it has been so far. I read your post and I will have him read it and hopefully he will join here and share and find a way to deal. He has 02 and now we can start to find something that may help. Red Bull also helps. It was a great post and I want to thank you. For those who are new to this, they won't feel so lost. Hugs and thanks

I need Help I am in a Cluster Period they started the end of May I have tried everything I need to BREAK THIS Fn CYCLE HELP HELP

Welcome to the board. Are you working with a decent headache doc yet? A short course of prednisone will often times provide complete relief, but is best used while starting on a decent prevent med like Verapamil, Topomax or Lithium. While pred will generally stop the attacks for me, when i go off of it without a prevent in my system, it kicks my ass making up for lost time! Pred is not something you cna take long term but on a short term basis is great to get you back on your feet. Do you have eny med you're currently using as prevents or abortives?

Joe

I am a 61 year old female with, what I believe to have is cluster headaches.I have been to many Dr.s with no success other than to blow it off as sinus or allergys. I started having them about 8 years ago.I have done a lot of research on my own. One Dr told me she believes I have ch's but did nothing to help me.The pain is the worse pain I have ever felt or imagine could ever happen to a human being and still live through it. I dread night because I know they will wake me up in horrible pain again. I went to a new Dr today and told him about them(headaches) He said that he has heard of them and heard they were very painful and wants to try me on a low dose (25 mg) of Toprol. We will see I guess. It is the first meds that I have ever been put on for cluster headaches.I'm wondering if anyone knows if Toprol can possible help me? :'(

Hi Linda and welcome

There are some journal articles linking toprol and cluster headache (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) however it isn't one of the commonly used treatments.

You really do need to work with a headache specialist to get a definitive diagnosis as most doctors, even most neurologists have little training in the area of headaches.

If you read up here you'll learn a lot more about CHs, but you really do need that diagnosis.

I would like your opinion on liquid oxygen verses gas oxygen? My new Neurology put me on gas oxygen (which works) but my insurance will only pay for liquid oxygen!

Linda,

The simple answer is a home liquid oxygen (LOX) system can only deliver oxygen at a maximum flow rate of 15 liters/minute while compressed gaseous oxygen systems can deliver oxygen up to 60 liters/minute and demand valves up to 140 liters/minute.

Why that answer is important to a cluster headache sufferer is another story you need to understand.

The most effective method of oxygen therapy involves flow rates that support hyperventilation...  In simple terms that works out to oxygen flow rates between 25 to 40 liters/minute. 

That might sound like a high flow/respiration rate but it really isn't.  If you jogged for 3 to 4 minutes or climbed 3 to 4 flights of stairs at a rapid pace...  Your respiration rate and tidal volume of air inhaled with each breath would increase to cast off the additional CO2 your body produced as a result of the increased energy expended.

If you did the math, after either of the above physical activities, your minute volume of lung ventilation would be around 40 liters. (Minute volume = the volume of air inhaled in one minute).  Expressed as a flow rate... 40 liters/minute.

There are several brands of regulators capable of delivering gaseous oxygen at 0-25 liters/minute.  Flotec Inc. manufactures regulators capable of delivering oxygen at 0-60 liters/minute.

The problem with liquid oxygen systems is they can only deliver 15 liters/minute.  Why?  It takes a lot of heat energy to boil/evaporate LOX to gaseous oxygen.  One liter of LOX will expand to 861 liters of gaseous oxygen. 

As all home LOX systems use room air to heat the evaporator that converts LOX to gaseous oxygen and higher gaseous oxygen flow rates requires additional heat energy to meet that demand, you reach a point where room air cannot provide the needed heat energy.  At that point the evaporator freezes up and the flow rate drops like a rock.

Why are oxygen flow rates that support hyperventilation more effective with shorter abort times?  The answers are illustrated in the results of a pilot study we conducted 2007-2008 comparing this method of oxygen therapy to oxygen therapy at a flow rate of 15 liters/minute.

Seven CH'ers, (one woman - six men, one episodic - six chronic) logged a total of 366 aborts using oxygen flow rates that support hyperventilation.

We used a primary outcome measure of pain free in less than 30 minutes.  There were 365 successful aborts for an efficacy of 99.7%.  The average abort time for all pain levels between 3 and 9 was 7 minutes. 

The one failure occurred when the CH'er got trapped out of his house without a key when his wife went shopping while he was out for a walk. By the time he finally broke into his home and started oxygen therapy at flow rates that support hyperventilation, his cluster headache pain had risen to nearly 10 on the 10-Point Headache Pain Scale.  He tried to abort the Kip-10 but was forced to resort to a bailout escape abortive shot of imitrex after 30 minutes...

Each CH'er logged their aborts for a total of 8 weeks.  Accordingly, this study provided a set of meaningful longitudinal results... where the typical gold standard RCT requires participants use the abortive only once then switch randomly and blindly to a comparator (O2 @ 15 liters/minute) or placebo (air @ flow rate that support hyperventilation).

We had originally planned to have all participants log aborts for a week using a flow rate of 15 liters/minute.  However after the first participant completed a week collecting abort times and pain levels at a flow rate of 15 liters/minute (35 aborts) and then switched to the demand valve method, the results were so significant and dramatic, we elected to skip collecting any further data at 15 liters/minute. 

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As you can see, a CH'er using the demand valve method of oxygen therapy (DEVO₂) or a regulator capable of 25 to 60 liters/minute (both methods support hyperventilation) the abort times were three to four times less than the corresponding abort time using oxygen therapy at a flow rate of 15 liters/minute at the same cluster headache pain level.

For example, a CH'er using a flow rate of 15 liters/minute can expect to abort a cluster headache at pain level 7 in an average of 27 minutes while the same CH'er using the demand valve method or a 0-60 liter/minute regulator can expect to abort a cluster headache at pain level 7 in an average of 7 minutes...

You'll also notice the time to abort increases exponentially as the cluster headache pain level increases.  This is particularly troublesome for CH'ers limited to a max oxygen flow rate of 15 liters/minute.

At pain level 8 (KIP-8) using a flow rate of 15 liters/minute, abort times are almost all over 30 minutes.  At pain levels above 8, many will not be able to abort a cluster headache at a flow rate of 15 liters/minute.

Now for the dollars and cents discussion with your insurance company...  The average cost per abort before insurance using oxygen flow rates that support hyperventilation is $1.20 to $1.50.  That figure is based on a fair market price for an M-size oxygen cylinder refill of $30 to $35 (no delivery charge or rental expense for regulator and mask)...  At an average of three cluster headaches a day that works out to $4.50/day, $31.50/week and $126/month. 

Demand valves are great but expensive... ~$500 for a demand valve and regulator...  You can get a 25 liter/minute regulator for $25 to $35 or a 0-60 liter/minute regulator from Flotec for ~$190.  Either will work just as effectively as a demand valve...  DJ has the O2PTIMASK Kits at the CH.com store at the left for $29.50.

If you used generic sumatriptan succinate (imitrex) nasal spray (max of 2 per day) at $25 per spray...  the cost is $50/day...and $350/week.

If you used generic sumatriptan succinate (imitrex) subcutaneous injections (max of 9 per month - a limit set by most insurance companies) at $100/injection...  the cost is $900/month.

If your insurance company fails to respond to this logic... take up welding...  A complete M-size welder's O2 system with regulator runs around $300 and refills around $35.

If you've followed any of my other posts on using the anti-inflammatory regimen as a cluster headache preventative...  the cost per day for the basic regimen (Costco prices) with 10,000 IU vitamin D3 is 20 cents...

See the following link for details...

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Take care,

V/R, Batch

ok...I try to avoid this place because I don't want to be reminded of the beast when I'm not in cycle. And, when I'm in cycle...I don't care about anything but being out. Get what I'm saying?

That being said.....here goes

My cycle is 3 months on...3 months off every fucking year of my life for the past 30 years. Always end of October through end of January......PF until June...and, here we go again until THAT 3 month period starts back up and I get ready for October again.

I fortunately found a doctor that is sympathetic and somewhat enlightened (thanks to my insistence) and kicked me into Imitrex (stat dose...injections, a Godsend) which, more than likely kept me walking this earth. Because I'd just about had enough after all this time.

BUT....through all my years of dealing with this shit without any medicinal assistance...I HAVE developed a few moves that can help you through the night/day if you can't get any pharmaceutical help.

These "headaches" originate in your trigeminal nerve area. I know this because my daughter, who is in her third year as a pre-med student ( who says she decided on a medical career after growing up watching me go through what I go through) validated my "pressure point" system of dealing with clusters without medication.

Look up "trigemenal" and you'll see that everything there is directly related to what you feel. And, where you feel it.

First...40 ounces of fresh brewed, strong as fuck coffee...hot as you can sip it. Sip it as fast as you can...get that caffeine to work for you (it changes the bloodflow)...and, then..........

There ARE a couple places that....if you press hard enough on the right spot (feel around...it's where it REALLY hurts. Yeah...that's it)...and hold there like your life depends on it (do NOT EVER let up, no matter HOW much it hurts or you'll start all over again.)  Now, push in with your fingers like you're trying to penetrate through your skull into your brain...(you've done it before...just not this specifically)...and it will reduce the duration of your cluster. Trust me. It fucking works. As long as you don't stop. You CAN'T STOP! No matter how tired your fingertips get (and, they will).

Cut it from hours to .....maybe 30 minutes. It's a fucked up blood flow thing through the trigeminal nerve that we CH sufferers, I guess....are born with.

I have access to all the Imitrex I need now...but, I remember when I didn't. And, I'd love nothing more than to be able to help YOU with your suffering.

Because no one was there for me.

Wow, KONG! Thank you for wanting to help us with our cluster headache pain. But, you joined this website back in 2007 and now with your very first post today you've tried to tell us what we all knew years ago.
Sip 40 oz. of very hot coffee as fast a possible? No thanks. A 12 oz. can of cold Red Bull or a 2 oz. shot of 5 Hour Energy drink will work much better and much faster.
The pressure point thing might work for you but adding pain to stop pain is not for me. An ice pack is my relief.
The "headaches" originate with the hypothalamus (not the trigeminal) and cause swelling of the the blood vessels around the trigeminal, putting pressure on the trigeminal and causing the pain.
And, blood does not flow through the trigeminal nerve.
Finally, please clean up your dirty mouth.

BobG wrote on Jan 22^nd, 2015 at 5:27am:

Wow, KONG! Thank you for wanting to help us with our cluster headache pain. But, you joined this website back in 2007 and now with your very first post today you've tried to tell us what we all knew years ago. Sip 40 oz. of very hot coffee as fast a possible? No thanks. A 12 oz. can of cold Red Bull or a 2 oz. shot of 5 Hour Energy drink will work much better and much faster. The pressure point thing might work for you but adding pain to stop pain is not for me. An ice pack is my relief. The "headaches" originate with the hypothalamus (not the trigeminal) and cause swelling of the the blood vessels around the trigeminal, putting pressure on the trigeminal and causing the pain. And, blood does not flow through the trigeminal nerve. Finally, please clean up your dirty mouth.

Yep.

           Potter

BobG wrote on Jan 22^nd, 2015 at 5:27am:

Wow, KONG! Thank you for wanting to help us with our cluster headache pain. But, you joined this website back in 2007 and now with your very first post today you've tried to tell us what we all knew years ago. Sip 40 oz. of very hot coffee as fast a possible? No thanks. A 12 oz. can of cold Red Bull or a 2 oz. shot of 5 Hour Energy drink will work much better and much faster. The pressure point thing might work for you but adding pain to stop pain is not for me. An ice pack is my relief. The "headaches" originate with the hypothalamus (not the trigeminal) and cause swelling of the the blood vessels around the trigeminal, putting pressure on the trigeminal and causing the pain. And, blood does not flow through the trigeminal nerve. Finally, please clean up your dirty mouth.

Hey Bob, having a bad day?

Marc

Does anyone think pollen is a trigger? :-/

You bet it is !!!  Pollen is a major CH trigger...  An allergic reaction to pollen also revs up the immune system and when that happens, it consumes available vitamin D3, its metabolites and the enzymes needed to metabolize it to 1,25(OH)2D3 big time.  For CH'ers on the anti-inflammatory regimen, this leaves too little vitamin D3 to prevent CH at a dose of 10,000 IU/day vitamin D3...

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It happens every year around this time and when it does...  10,000 IU/day vitamin D3 is not enough to keep me CH pain free... 

I just returned from a week in Key West, FL where I was totally PF the entire time...  I was also ramping up on vitamin D3 with 25,000 IU/day while there...  12 hours after returning home, and you can see the pollen on my pickup in the photos above, the beast was prowling big time...

I'm presently taking 40,000 to 50,000 IU/day vitamin D3 spread out over 4 to 5 doses at 10,000 IU and 800 mg/day magnesium to stay pain free.

V/R, Batch

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There are some truths when it comes to Cluster Headaches.

MOST CH sufferers are male.  MOST migraine sufferers are female.  Migraine sufferers need quiet, still and dark.  CH sufferers need activity!!!! 

Before I,  “knew anything” I could “metabolize” through an episode with VIGOROUS physical activity, which probably also took my mind off the pain.  Alternating cold and hot face splashes seemed to help

It is quite likely that CH is hereditary, but decades ago no one knew what they were.  After years of talking to friends and family, I am POSITIVE that my father had them---but they were not diagnosed back then.  He may have taken his own life during an episode.

MOST CH sufferers are current or former heavy smokers.  If you smoke, QUIT.  Chantix worked for me.  If you are suicidal or have nightmare, forget Chantix.  You are screwed.

Vitamin D levels are the real deal---have your D25 test done, particularly in winter when you are not getting a minimum of 15 minutes a day of short-sleeved sun.  Request a Test requires no doctor and cost under $30. Some advocates suggest a level of 80, others 50.  At least 50, in my opinion.  If it is down in the 30’s, you are deficient IF YOU ARE A CH SUFFERER.

Oxygen as an abort.  An anecdote: when I was “in cycle” a few sips of red wine would bring on a CH.  I was SO CONFIDENT in O2 as an abort I would swig red wine with ABSOLUTE CONFIDENCE that I could abort with oxygen, i.e., “bait the beast”.

Get on Oxygen as soon as you get a shadow.  Once a CH starts, time how long it takes to abort and stay on past that the same length of time to prevent rebound.

Most doctors know NOTHING about Cluster Headaches.

You need to suck down Oxygen at HYPERVENTILATION levels.  Strive to collapse the 3 liter bag with each inhale.

The D3 regimen is just that: a regimen, not just one vitamin.   Preferably take with an acidic beverage with the largest, highest fat content meal.

I hear people say, “Oxygen didn’t work for me”.  Perhaps, and obviously some things don’t work for everyone, and it might not be CH but a brain tumor, but I suspect that the O2 administration  was flawed.

Do not depend on your doctor or insurance company. If you cannot get prescribed O2, get it from any welding supplier (TSC, Harbor Freight, etc.). DO NOT TELL THEM WHY YOU ARE BUYING IT! If you do, they must refuse to sell it to you and you just screwed over everyone else.  You can say you weld, do metal sculpture, or need pure O2 to breed/hatch exotic fish---if they even care.

NONE of the serious meds prescribed were EVER developed for CH, but for migraines and other maladies.

Medical and welding O2 come out of the same wholesale liquid Oxygen tank.  Medical requires the tank to be flushed before filling.  Welding does not---but welding truly requires O2 every bit as pure as medical---ask a welder.  Blue versus green tank, and a different regulator fitting. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE has info on different fittings.


I suffered from episodic CH for 30 years.  NO doctor ever successfully diagnosed it.  A customer and friend watched me go into a CH, his father had them and he immediately knew what it was. Still, back then, over 30 years ago, that info was pretty useless since not a single doctor I went to knew what I was talking about.  More than one wanted to send me to a shrink.

This saved my life:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;  And Charlie Batch.

I went to see a supposedly highly knowledgeable neurologist, a specialist in CH and he prescribed a lidocane nasal spray as an abort---more painful than the CH it was to abort, and prednisone as a prevent---a drug with HORRIBLE side effects.  I never took the pred---saved it to treat my old sled dog’s allergies and tossed the spray.

Having said that, a neurologist “should” be able to eliminate more serious issues, e.g., a brain tumor without drilling holes in your head.

Sadly, I believe some folks value the number of prescription drugs they are on. Just saying.

On June 1, 2009, I quit smoking.  That same year I got on START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; I started testing my D25.  That fall it was UNDER 30!  TWO WEEKS ON THE D3 REGIMEN AND IT WAS OVER 50!

There is a circadian rhythm to CH onset.  Mine were always May and October.

That same year I ordered my first Cluster Mask, regulator and welding Oxygen.  I got some CHs in late 2009 and early 2010, and the O2 stopped them in their tracks. Now I monitor D25 religiously; I do not take the D3 regimen year-round, only as required based on tests or shadows.

I’ve not had a CH in eight years.  As soon as I get that familiar “eye twitch” I check D25 and start D3 regimen.

Original “Monster Green” will slow the onset dramatically and allow you to get back to your O2.  Afrin spray may also help.

I was once excused from jury duty because I told the judge I needed my O2 tank close at hand.

Don’t scrimp on the mask.  The Cluster Mask is the best.  If some fool tells you that you can get a mask and bag for $5.00 instead of $25.00, ask yourself…really?

I still own three welding O2 tanks---one on each floor, in spite of no CH for years because, why temp fate?

And immediate administration of pure O2 dramatically increases your chance of surviving a heart attack with your brain intact.

Talk among yourselves!

Questions?  Comments?

Jim Tew wrote on Mar 14^th, 2018 at 11:45am:

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I love this post! Thanks for reviving this thread.

I've had many similar experiences. 36 year sufferer. Highly predictable timing for the episodes. Hard to diagnose (women don't get CH) ::). In the beginning, I could abort a pretty bad one by going running. That's how I knew they weren't migraines. My dad had undiagnosed headaches, but I couldn't get enough details from relatives. O2 only worked intermittently until I learned how to hyperventilate. Strong coffee (chilled if you prefer) drunk quickly while pressing an ice pack on the back of the scull behind the ear (on affected side) at the first sign can often halt an attack. The D3 has been quite successful for me. It's great that you can go on and off the regime as needed, but I'm not sure I can.  Question: where do you get a D25 test for under $30?

~Patti

A good post Jim, thank you for taking the time to write it up.

Hi Everyone!

Just wanted to comment on the "hereditary" issue.  From what I've been told, my Great Grandmother (on my Dad's side) had very bad headaches.  They said she would place a concoction of wet medicinal herbs in a pouch on her forehead and actually tie it around her head and wear it to get rid of her headache.   I've also been told that she was quite the "natural chemist" and had a concoction of herbs, etc. to cure what ailed you.  Hate all that info has been lost over the years. 

Also, my Dad used to have terrible migraines when I was young -- you know, the kind of migraine that makes you sick on your stomach and want a dark, quiet place to sleep it off.  So, although Dad has never had a CH he can empathize with my pain and he's very grateful he's never had one of my kind of headaches. 

Headaches, of one sort or another, obviously run in my family.  So, there may be some truth to the hereditary thing.  Very interesting learning some family history...just wish someone had wrote it all down.

Best Wishes,
Payg