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Hi there!

I just wanted to quickly introduce myself. My name is Ravyn and I live in Portland, Oregon. I've been suffering from cluster headaches for over 20 years but was only diagnosed about six months ago. I've been on Verapamil as a preventative measure which seems to be an improvement over nothing -- and Sumatriptan as an abortive measure, which seems to work about 25% of the time, which I will gladly take over 0%. My doctor would love to prescribe me oxygen but my insurance won't approve it.

Just was hoping to connect with other CH sufferers. Hope everybody's day is CH-free. :)

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Ravyn,

My insurance this past year also quit covering my O2.  I was lucky to have a backup provider that doesn't backout quite as easily.  I'd highly recommend welding O2.  It's a complete game changer.  Attacks are aborted, and aborted usually quite quickly.  The key is getting on the O2 at the FIRST sign of your attack.  Waiting significantly reduces the effectiveness of the O2.

PFW,

Jeff

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....Sumatriptan as an abortive measure, which seems to work about 25% of the time

Hi Ravyn, what THMH said, plus when someone reports a low success rate with sumatriptan I tend to go out on a limb and guess that they've likely been prescribed the pill form. Is that the case with you?

Inhaler and injection delivery methods for sumatriptan are much faster and more effective for CH, and many CH'ers reach a 100% abort success rate with injections. I still think of sumatriptan as something to only use in a pinch when the high flow O2 100% isn't available though.

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Welcome, Rayvn.  20 years!  How terrible -- but good that you're now diagnosed.  There are some very good folks from this board up there in the Portland area.

As Jeff says, you want oxygen!!!!  It's the best friend of most people with CH.  I once looked into getting welding oxygen in Portland, so I know it can be done.  If you can't persuade your insurance to cover medical O2, I think almost everyone here would recommend setting up a welding-O2 based system.  You can read more here about what you would want/need: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf  (You can get to the same file as a Word document from here: http://clusterbusters.com/?page_id=77)

Is your sumatriptan injectable?  Seems like you would be having better than 25% success with that.  If it's pills you have, try to get the injectable sumatriptan instead.  [i see that crafty Bejeeber snuck in ahead of me on this one.]

Do you know about using energy drinks (RedBull, Monster, etc.)?  For many people, an energy drink at the start of an attack can significantly reduce the severity, or even sometimes abort it.

Do you know about the "vitamin D" regimen that helps a lot of people?  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Melatonin at night?  Also helps a lot of folks.  There are quite a few other things, too, such as licorice root and kudzu, that have helped many people.  (There are also other pharmaceutical meds, such as prednisone and lithium, that can help, though most people here would say that over the long run they can have some undesirable effects, such as extending cycles and causing rebound headaches.)

Might you consider "busting"?  Read the basics here-- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and if it interests you, read the other files (the numbered ones) over in the "ClusterBuster files" section of this board, which you can get to from the "Forum Jump" at the bottom right of this page, or from the "General Category" heading at the top of the message boards.

Mostly, please feel free to ask questions -- you'll get answers.  (Also, the search bar at the top left is a good way to find out more about specific things.)

What an amazing person you must be to have endured this for 20 years.  Things can now start getting a lot better for you.

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I live in an area that there are not many choices of medical suppliers and basically the the supplier doesn't want to deal with it so they are charging me $10 a tank which seemed like a great deal but I am going through it so fast it is costing more than I thought but my point is if you call a supplier and tell them why you need the oxygen maybe they will wok with you to make it affordable.  Also as I have learned from this here make sure you get a nonrebreather mask.   

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Welcome Ravyn - Hope you get some pain free days. I live in Cali so we are somewhat close. Dont give up on the insurance battle. I used to call them daily and argue with them then i would go back to my doc and make him get on the insurance company - he had to write several explanations of why things were needed but I ended up getting what i needed in the end.

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Hi Ravyn.  Welcome to the site!

Sounds like you have received some good advice so far.  With or without your insurance company covering you ..... get that script for o2 from your doctor.  Where there is a will there is a way .... and o2 can quickly become your best friend.

Again, WELCOME!

Best regards,

steve

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Hi.  I am new also.  This is my 4th "episode" of CH.  I was diagnosed in my early 20's and was told it is rare in women.  Lucky me.  I am now in my mid-ish 30's and am going thru this again and am on the end of my 3rd week.  I am apparently rather lucky though.  As I am reading the entries on this forum many of you are chronic.  I am currently not taking anything as nothing has helped and I cannot afford more in monthly RX's. 

I cannot fathom what you guys (or gals) go thru when you suffer from the CH chronically.  A few months out of every few years is too much for me.  I am exhusted, edgy with my kids/hubby and unable to focus my brain the way I can noramally during a remission.

This is my husbands first round of CH with me.  He works overnight (which is when this round is hits-thankfully no CH during the day) he comes home to find me more tired then when he left, and I look like someone beat the hell out of me (dark circles, etc).  At first he thinks these are normal headaches and does not understand.  He witnessed his first CH two nights ago and was going to rush me to ER.  Said that is was like watching a person going insane for 45min and then they pass out. 

Sorry for ranting...just tired.  Looking forward to a new remission.  I send warm thoughts and best wishes to all of the CH sufferers out there! [smiley=sad.gif]

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Hi P. Ivy,

So you got the night visits from the beast huh? That sux REAL bad.  :(

BUT *busting* has fortunately proven to be more a more effective preventative than the RX's (not to mention more affordable for those of us in the USA).  8-)

PLUS most find they can afford welding high flow 100% O2 for aborting their attacks.  :)

Heck I should just say please read CHfather's post above, and follow every word and link relating to O2, busting and D3 very carefully, as it is indeed the condensed CH bible! In fact I'm starting to think we should call him CH Heavenly Father. :D Oh LORDY, how could it have taken me so long to think of that one?  ;D

And in hopes of helping to motivate you to turn this thing around, here are 2 links - a genuinely riveting Newsweek article on busting for CH, and a video talk by Cluster Busters founder Bob Wold on his CH experience. These can get you up to speed and inspired in a jiffy, and I mean toot sweet.  :)

http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html

http://vimeo.com/10918637

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Good luck to your dad Jeff.

Welcome to the new people.

I am one of the CHRONIC ones so count your blessings :)

Oxygen and mushrooms will save your sanity, if not your life.

We are having an annual conference in Chicago in September if y'all can make it. Meeting other sufferers is priceless and we all actually manage to have fun and learn how to better survive with this SHIT :)

Dan

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Hi poyzinivy.....

Sorry you had to find us, but GLAD you're here.

The discoveries and info gathered by the "Gods" of this group are absolutely compulsory!  Speaking as a four-year Chronic myself, the O2 (correct set-up), mushrooms and D3 Vitamins are indeed a life saver .... and sanity saver like Hipshot said. 

Your husband has a right to freak-out, just like all of our spouses have.  I can't imagine seeing someone else go through what I do.  I can't even watch video's of people having a CH attack.  Just too disturbing!

Ask all the questions you can think of and you will be answered with VERY good advice and instructions.  The experts are on board --- just jump in!

I too, had never met anyone with CH before going to last years Conference.  The experience is PRICELESS.  It made a believer and true supporter out of my wife.

Best of luck, and pain-free days to you ........... ;)

weatherman

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  • 4 weeks later...

Thank you everybody for your helpful responses. I do have the pill form of Supatriptan. I will ask my doctor if I can get the injectible form.

I will certainly take all of your wonderful advice to heart. Thank you so much for taking the time to respond.  :)

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I am fairly new to this site and condition (15 months),but it seems to be chronic.These folfs here will stear ya right.

You need oxygen.It has saved me . two weeks ago i was lookin at other options.Permanent ones.You need oxygen.

Good luck

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