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Ghost

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Re: Helpful Hints - MUST READ!!
Reply #25 - May 5^th, 2006 at 11:02am

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

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floridian

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Re: Helpful Hints - MUST READ!!
Reply #26 - May 6^th, 2006 at 5:40pm

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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« Last Edit: May 6^th, 2006 at 7:13pm by N/A »

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Jonny Ex Member	Re: Helpful Hints - MUST READ!! Reply #27 - May 8^th, 2006 at 7:07pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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joke ten dam CH.com Junior Offline I love YaBB 1G - SP1! Posts: 51 x1\|the hague\|Netherlands\|europe\|215\|236\| Gender:	Re: Helpful Hints - MUST READ!! Reply #28 - May 14^th, 2006 at 6:32pm I think this is very important for the board so I'm bumping it too.
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Summerbabe CH.com Veteran Offline Live well. laugh often, Love Much Posts: 164 x0\|Stoneham\|USA\|\|0\|0\|MA,Massachusetts Gender:	Re: Helpful Hints - MUST READ!! Reply #29 - Jul 13^th, 2006 at 7:56am ; Job well done...proud of you, and thank you... Summer
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Re: Helpful Hints - MUST READ!!
Reply #30 - Jul 28^th, 2006 at 12:19pm

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

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noranate CH.com Newbie Offline Nora-N-Nate You Are My World Posts: 22 x0\|nashua\|USA\|\|0\|0\|NH,New_Hampshire Gender:	Re: Helpful Hints - MUST READ!! Reply #31 - Dec 7^th, 2006 at 12:27am Is anyone finding that O2 is not working for them?
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snow bunny CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 2 x0\|Bracebridge\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Helpful Hints - MUST READ!! Reply #32 - Mar 11^th, 2007 at 2:22pm awesome ed vise!it really helped! Santa ;
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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Helpful Hints - MUST READ!! Reply #33 - Mar 15^th, 2007 at 11:08pm Thanks for the exce..ent post. My condolences to the Kipple family and loved ones. You will be in our prayers. Jerry
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Dunnie_work CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 2 x0\|Quantico\|USA\|\|0\|0\|VA,Virginia	Re: Helpful Hints - MUST READ!! Reply #34 - 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?
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Ghost CH.com Alumnus Offline Farting relieves the pressure Posts: 4106 Farmersville, TX Gender:	Re: Helpful Hints - MUST READ!! Reply #35 - Mar 21^st, 2007 at 1:10pm 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
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baadpuddytat CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 1 x0\|atlanta\|USA\|\|0\|0\|GA,Georgia	Re: Helpful Hints - MUST READ!! Reply #36 - Mar 23^rd, 2007 at 1:39am 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?
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ClusterChuck

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Re: Helpful Hints - MUST READ!!
Reply #37 - Mar 23^rd, 2007 at 2:12am

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

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CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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chrisw CH.com Old Timer Offline Posts: 315 x0\|turnersville\|NJ,USA Gender:	Re: Helpful Hints - MUST READ!! Reply #38 - Mar 23^rd, 2007 at 2:49pm 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
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Charlie

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Re: Helpful Hints - MUST READ!!
Reply #39 - Mar 23^rd, 2007 at 9:32pm

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

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dannyboy

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Re: Helpful Hints - MUST READ!!
Reply #40 - Mar 26^th, 2007 at 9:13am

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

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« Last Edit: Mar 26^th, 2007 at 9:25am by dannyboy »

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southwalessunshine

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Re: Helpful Hints - MUST READ!!
Reply #41 - Jul 10^th, 2007 at 8:05am

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

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Re: Helpful Hints - MUST READ!!
Reply #42 - Oct 6^th, 2007 at 11:10pm

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.

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NJRik CH.com Junior Offline Posts: 54 x0\|Eatontown\|USA\|\|0\|0\|NJ,New_Jersey Gender:	Re: Helpful Hints - MUST READ!! Reply #43 - Oct 10^th, 2007 at 10:32am 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.
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Wardland97

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Re: Helpful Hints - MUST READ!!
Reply #44 - 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

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Bob Ward - International Healer

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Potter

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Re: Helpful Hints - MUST READ!!
Reply #45 - Nov 17^th, 2007 at 9:49am

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

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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Helpful Hints - MUST READ!! Reply #46 - Nov 17^th, 2007 at 10:09pm Profile says he's from Bonkers, NY Yep, that's about right.
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erica

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Re: Helpful Hints - MUST READ!!
Reply #47 - Jan 27^th, 2008 at 7:56am

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. Undecided

thanks for the hints!

-erica

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my right side feels all wrong.

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Batch

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Re: Helpful Hints - MUST READ!!
Reply #48 - Jan 30^th, 2008 at 11:04am

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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" rel="gb_image[nice_pics]" title="...">Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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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.

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« Last Edit: May 19^th, 2008 at 9:50pm by Batch »

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levmyshkin

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Re: Helpful Hints - MUST READ!!
Reply #49 - Apr 17^th, 2008 at 9:44pm

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.

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