Hello everyone
     My name is Brad, I'm 36 and have been living with this for 18 years now.  I have been to see:  my family doc, neuroligist, chyropractor, accupuncturist, cranial massage dude, ENT specialist (had my nose operated on), dentist, all to help with my friggen head.
     I was diagnosed about 10 years and have been on a laundry list of meds since.  I am married and have a 9 year old son.  I think that my wife woulda reconsidered my proposal had she known what was in store.  I thank God every day for her because without her I probably wouldn't be here.  (she is the one that found this site).  
    I have never been one to ask for help with anything so this is all new to me (yes typical male I know).  
    My eyes hurt from reading so much but I am glad that there are people out there that know what I go through.  
     What works for me: Imitrex, prednisone, Red Bull, Chain smoking, beating my head, sometimes eating.  I have not yet found a good preventative although I am on Verapamil but cannot tell if it does any good or not.  
    I went 3 years with only about 3 attacks then about a month ago-WHAM!!!  I thought maybe I grew outta them.  Kinda just foolen myself I think.
    Does anyone else vomit if headache isn't aborted?  I do every time.  My wife says I'm the grossest puker in the world.  but yet she is still here, hehehehe.
Thanks for reading----Brad Bowers----Gladstone, Missouri
   

I used to puke but I think it was more from the pain meds. I still get nauseous from the pain if it ratchets much over an 8 or so, but rarely puke.

Have you tried oxygen yet? I can abort an attack, completely be pain free, in as little as 6 minutes, using just oxygen. Like everything, it doesn't work for everybody, but a large percentage of those who try it get relief so it's certainly worth a shot. What you need to know:

Pure oxygen, at a high flow rate, at least 15 LPM or higher, using a NON RE BREATHER MASK.  That last parts critical. Re breathers and nasal canulas are worthless. For your body to get the vaso constricting effect we need, your lungs must get only pure oxygen, no outside air, no air you've exhaled. Again, with the high percentage of people having success, and as cheap as it is, it's sure worth a shot.

Welcome to the board, damned glad you found us. (My wife found the site for me too, thank God for our supporters!!!) Here's hoping we can ease your load a bit.

Guiseppi

Hi Brad & Welcome to Clusterville

 I'm another 02 pusher.  I can't use Imitrex (some artery blockage & high cholesterol), so 02 is my only abortive . . . a real miracle for most of us . . . also inexpensive.

 You have much reading to do and many questions to ask . . . fire away . . . you've found the motherlode of CH info/caring/sharing, and the answers you will get here come from folks who truly know your pain.

 My wife also found this site for me (2/02) and it and the people here gave me my life back . . . ALL HAIL DJ!

 Be Safe,    PFDANs


    Richard

Welcome Brad,
I too am new to this site (I have been regularly lurking here for about three years and just recently started to participate)
30 years with Clusters  - longest remission 9 months
I am sure you will find the seasoned participants a great resource to draw information and strength from.
Glad your wife found us.
Paul in Canada

Hey Brad,

Welcome aboard.  I'll second the recommendations for oxygen therapy from Guiseppi and Richard.  

If you've not taken the cluster headache survey, please try to do so as it appears you've got a lot to offer.  We're gathering some of the best information ever compiled on our disorder with this survey, but there's less than ten days left to participate.  Here's the link:

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Take care and check your PM.

V/R, Batch

I know it's been said, but oxygen used correctly will probably prove to be your first line of defense. When I first tried it years ago, I gave up because "it didn't work for me." Then I learned that I wasn't doing it the way we Clusterheads need to do it.

When I found out just how well it worked, I was amazed and angry - all of those years of agony because I didn’t know……..

Marc wrote on Nov 24^th, 2008 at 11:28pm:

When I found out just how well it worked, I was amazed and angry - all of those years of agony because I didn’t know……..

For me it was because I didn't know......then because I wouldn't listen....

Hi Brad,

Marc, Guiseppi and Bill have given you excellent advice that I cannot add to.   02 has saved so many here... it is certainly worth a try.


Please let us know how things go please?   We care and if you have any questions about meds, or oxygen or anything else just ask us.

Hi, Brad!  The beast can fake its death in long remission, can't he?  I almost forgot I have CH in my longest remission.

I've never vomited because of the pain, but you know psychological distress can severely affect the GI system.  So it doesn't surprised me if puking is caused by the pain.  Are you sensitive to Imitrex?  It works like a magic for me, but just a TAD more than I can tolerate can make me puke in a hurry.  Like many others, O2 is my first line of defense.  Even when I don't know whether the shadow or the low-grade HA/pressure on my CH side may develop to CH, I try O2 to see if I can kill it.  So I use O2 almost as a preventative as well.

It's real important to get to O2 as soon as I feel it coming on.  Just don't wait until it hurts bad to the point of having to do something about it.  Sometimes CH develops from 1 to 10 in no time, and we can't always have O2 within sight.  But like others said, it's totally worth a try!

Hi Brad and welcome. Sorry you are still trying to find what works for you, but hang in there.

Have you talked to your doc regarding getting a script for o2? It aborts my CH's within minutes if I catch it in time, with no side effects! Welders o2 is also an option so don't despair.

I am in full cycle right now and take 480mg Verapamil daily, and for the most part it is keeping the beast at bay. When a hit breaks through my barrier I get on the o2 right away and I find relief within minutes. What dose of Verapamil has your doc got you on? Do not increase or decrease your meds without your docs ok.

Hope we can help you and you find the "right cocktail" that works for you.

 Barry :)

i havtred o2 about 5 years ago but it sounds like i hac the wrong equipment.  I was Using the tubes that barely go into my nostrils.  What kind of mask was it that I should use?

The o2 did help somein the beginning but at the end of my cluster it seemed not to work so I gave it up.

It was suggested to me that an anti snoring ??  machine would help me to get into a deep sleep and would make a more stabile sleep pattern and could help with CHs.  Has anyone else tried this?

Welcome Brad,

    I thought I grew out of it also, six years worth, and the he came back.  Sneaky bastard.

    Has anyone mentioned oxygen  ::)    
    I also had success with this.  Ten minutes on the mask and the mutha is gone.

    glad your wife found this site.  Lots of good info and advice here.  Best of all, we all know what you are going through.  
 
                                                    PFD's on Ya
                                                         JPC                                

The nose tubes are what they call the nasal canulas. They allow too much outside air in with the oxygen, dilluting it, and reducing its effectiveness. You want a NON RE BREATHER MASK.  It has valves which let the air out that you've exhaled so you do not re inhale it. That's the same reason the "high flow" regulator is so important. If you draw air in faster then the regulator can deliver it, you get outside air, not the 100% 02 your lungs need.

Go to the meds section, look at the post "Oxygen Terms Explained" by Chuck. Great posting with color photos showing you what you need for a complete 02 set up. It's cheap, easy on your body, and effective for many on the board.

Wishing you some pain free time soon.

Guiseppi

Brad Bowers wrote on Nov 25^th, 2008 at 8:07am:

.... It was suggested to me that an anti snoring ??  machine would help me to get into a deep sleep and would make a more stabile sleep pattern and could help with CHs.  Has anyone else tried this?

Brad,
On the snoring thing: I suspect that you are referring to a Sleep Apnea machine. That’s a whole different subject requiring a sleep study. It has been discussed at length around here for years and some folks feel that there is a direct connection, others do not.  

My younger brother is also a CH'er who gradually went into full remission when he went on the machine because of very, very serious apnea problems. Was it the machine, or spontaneous remission? He doesn't know and isn't going to find out because he has to stay on the machine every night.

My gut level feeling is that the connection may be more along the lines of a trigger for certain people, as opposed to a simple "cause and effect" correlation.

Get Bob P in here if you want to have a rousing debate on the subject  ;D "Do Clusters cause apnea, or does apnea cause Clusters?"


Marc

Hi Brad,

Just thought id welcome you here and say Hello!!!

HI!!!

I'm Si been on here since Feb-ish been suffering for 2-3 years now and am an 02 pusher, its my silver bullett. As usual the best people on here have already given you great advice as they did when i joined and helped me find the right path.

Hope you find your silver bullet

PFD to all!!! :)

Hi Brad,

I want to add my name to the welcome wagon.

It took me 12 years to get serious about getting a diagnosis and then about a week to find this site.  Take it from another stubborn male, this place will change your life.

O2 works for me along with Imitrex injections for the ones that O2 can't handle.  Last cycle this amounted to only a handful of hits.  Much better than what I used to suffer through.

I use O2 at work and in the car as well as at home.  It's my #1 abortive.

I also use Verapamil.  I didn't have a lot of luck with it until Bob Johnson showed me this article.  It gave me the map to success... at least for now...

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Quote:

Brief Communication Individualizing Treatment With Verapamil for Cluster Headache Patients Joseph N. Blau, MD, FRCP; Hans O. Engel, FFOM, LRCP&SE Address all correspondence to Joseph N. Blau, MD, FRCP, City of London Migraine Clinic, 22 Charterhouse Square, London EC1M 6DX, UK. From the City of London Migraine Clinic. Copyright 2004 By the American Headache Society KEYWORDS cluster headache • treatment • verapamil (Headache 2004;44:1013-1018) ABSTRACT Background.—Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses—720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.—To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.—Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.—Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy—lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.—Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. -------------------------------------------------------------------------------- Accepted for publication July 19, 2004.

Good luck and read till your eyes burn  ;)

-Dennis-

I'm so sorry you have this horror to deal with but here is some more reading. It worked for me:

                                         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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

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.

I used to try to imagine I was pushing blood away from my neck 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      

Brad . . . another suggestion re the 02

 When you next see your doc (soon, I hope) . . . make sure you copy the (recognized) 02 off this board and take with you.  Many docs are reticent to prescribe 02, and you need to be armed with info they can't disregard.

 In my case, about ten days after finding this site, finally getting a name-for-the-pain, and some hope of getting relief, I had what still ranks as the worst attack ever . . . at least 2 hr.+ Kip 10 by myself in the woods (was having 6-8 attacks daily at the time).  The next day, when I went to the doc, armed with much material, I was in no mood to be denied, though he really just wanted to up my Atenelol (sp?) script.  I persisted and he relented and gave me a script for Verapamil and 02 (4 lpm . . nasal canulae w/8 lpm reg) . . . didn't care . . had the script . . bought my own 15 lpm reg and non-rebreather mask.  Had my first PF day in over 13 months a few weeks after coming here.  DO NOT leave the doc's office without a script for 02.

 I am one of the few here who successfully uses the water treatment (see water X 3).  It can work . . . it's NOT easy.  My wife tried to get me to try it when I first came here, but as the Verapamil and 02 were giving me some control over the beast, I didn't try same.  Well, four years ago I had surgery which required/requires that I drink copious amounts of water/liquids.  Six weeks after the surgery, was having few attacks, all easily handled with the 02, was getting ready for chemo, and my blood pressure got uncomfortably low, I stopped the Verapamil.   Well, I didn't see any real increase in attacks . . . questioned the board whether the chemo "juices" might have had a positive effect CHwise . . . nope.

 Long story (I know guys . . . I tend to run on) short, for me, water is now my only preventative .  .  . has greatly reduced the frequency/intensity of attacks . . . and if I slack-up on intake I'm not surprised if I get hit.   And of course I avoid all my triggers whenever possible.

 Be Safe,   PFDANs

   Richard

O2 O2 O2  - You'd think 02 worked for a few people here! :)

For the night hits - you might want to try some melatonin (OTC med) About 6-15mg. It helps you get thru the REM sleep (where the CH occurs) and get the rest you need to fight during the day. Sometimes it takes a while to get in your system so don't give up if it doesn't work the first time you take it.

Welcome to Clusterville. Glad you found us, but sorry you have to be here.

Hugs BD

O2 is the best nightime hit killer!

I'm sucking on it as I write!! ;)