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Crystal S.

Feeling hopeless right now.

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Hi,

I am Crystal 34/F  I live in Pittsburgh. I have episodic CH every 18-24 months  3-4 times a day for 6 weeks. I am about 4 weeks into the cycle and currently taking 20mg of prednisone 2x a day and 120mg verapamil a day  also I take 4MG Imitrex injection to stop attacks. The Imitrex works every time! I can not get a prescription for O2 Dr. says there is no need because it has not worked in the past. Dr has no samples of the Imitrex due to cost :-(

Here is the problem I have one injection of the Imitrex left and no way to get more for 2 weeks.  I am sitting here feeling very hopeless because I know I will need to use my last shot and then I am out.   I am willing to try anything right now. I just want the beast to give me a break! I have never tried the mushrooms. I would if I could find them. I went to find some mushrooms and have had no clue where to look or how to go about it. I found out quickly there is no mushroom store! and I have never tried this so I am not even sure where to begin.  Where do I begin?

So here I sit praying my cycle will end soon. Down to my last shot and hopeless! 

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Unfortunately you would have to be detoxed off the drugs for 5 days in order for mushrooms to work effectively.  :'(

You and I, as episodic CH'ers are in a different place here than the chronics when it comes to deciding whether to detox and bust, and with only 2 weeks expected to be left of your cycle, well I would probably save the mushrooms (or RC seeds, more about that later) for prevention of your next cycle.

A couple things to note:

That verapamil dose is a low one for CH. CH'ers routinely find that much higher doses are what actually works. Hopefully someone who's been there will happen along and elucidate, or you could start a new topic here or at the other  ch.com message board asking about it.

If the prednisone isn't helping much, well I'd taper off. That's because at prolonged doses of 60 mg I experienced immune system malfunctions, and this and many other serious probs are to be expected with sustained high dose prednisone use. I just don't know how dangerous 40 mg a day is compared to 60 mg.

If you're in the US you can potentially just get welding O2, cheaper, without a prescription!  :) And it's reputed to be the same stuff as medical. lots of CH'ers do this. I bet CHfather will provide some input on this. Always listen carefully to everything he says.  :) I do.  8-)

Your idiot doctor sounds kind of hopeless, but don't you be!  :)

I imagine you're pretty much in "high cycle" at the moment with attacks coming on strong. That could make it more difficult for the following couple of quick and dirty free CH aborting techniques to work, but they could be worth a try:

1) At onset of attack, breathe freezing air deeply through the nose. if the outdoor weather isn't co-operating, jump in the car and put your nose up to the blasting A/C vent.

2) At onset, exercise extremely vigorously, as in sprinting

A couple more side notes - drink an energy drink or shot such as Red Bull that contains caffeine and taurine at onset. This could also help the partial dose imitrex/freezing air/exercise/O2 work longer and more effectively.

If you were to taper off the prednisone and hadn't taken the imitrex for 5 days it could still be worth trying RC seeds (which are legal/easy to acquire) or mushrooms even while still on verapamil.

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Once you're in a better place physically, go to the board entitled ClusterBuster Files. Then start clicking and reading. It's all the nuts and bolts of busting.

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crystal, that's an awful situation.  my heart is hurting for you, and i know that's true of everyone who reads you post.  my daughter is also 34 and in cycle right now, so it's particularly poignant for me. (she's a lot better off since she got a good oxygen system and started busting with RC seeds, but it's never a picnic.)

there are a lot of things you can do, and they all are likely to help you (and help you manage future cycles much better) but none of them is likely to be an immediate magic bullet.  you can create your own oxygen system using welding oxygen and regulators and masks that you can buy on the internet.  i'm not sure why your previous oxygen system didn't work for you, but our usual guess here is that the flow was too low or the mask was not right.  you could start by reading this file and then asking any questions you have: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

there are some harbor freight stores near pittsburgh where you can get oxygen and a regulator.  you'll be able to find them here: http://www.harborfreight.com/store-finder/

you can take rivea corymbosa seeds instead of mushrooms.  seeds are just as effective and can be purchased and possessed legally (preparing and drinking them is illegal).  i'd recommend that you seriously consider ordering some today and having them overnighted to you. among the many places on the internet where they can be purchased are www.iamshaman.com and www.psychoactiveherbs.com

read more about seeds here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

you'd probably want to order 150-200.

you could start today the vitamin D3 approach that has helped many people, some of them quite quickly.  it's relatively inexpensive, safe, and all the ingredients can be purchased at a decent pharmacy.  read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

have you tried melatonin?  are you using RedBull or Monster drinks taken at the onset of an attack to try to abort them?

our best wishes to you . . . hang in there and the good folks here will hang with you.

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I am taking Melatonin at 9 mg at bedtime.  I have not tried redbull. But I am going to get some! Also I am going to try the 123DAYS thing tonight too.  At this point anything is worth a try.  As far as buying O2 I will look into what I can buy. I am trying the water thing too. I've been drinking 1 glass every 30 mins as of 7 am this morning. I am hoping something works to stop this cycle. I just do not want mix to many things.  Thank you all for the support I am trying to hang in there! 

Questions on the RC Seeds. Can I use them while using everything else? I may be able to get some overnight mail.

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Crystal, I do understand why you don't want to keep shoving more stuff into your system.  Maybe the water will work -- I know it has for some people.  But here are a few thoughts.

It's my impression that some people take more melatonin than 9 mg when they're in high cycle.  I've read of 12 - 15 mg. not being an uncommon dose.

Based on experiences reported here and even more so at ch.com, I still think the D3 approach is worth serious consideration.  Here's the kind of comment that keeps me recommending it, even though for some people it has not been effective: >>>I have been headache free pretty much since starting the D3 regimen. I'm also taking melatonin at night. I'm convinced the D3 regimen. followed exactly as the directions indicate have ended my cycle.<<<     I do think that following the directions exactly is important.  (Ah! I just realized that the "123 days thing" you referred to is the D3!  Good.)

In order to take the seeds, as Bejeeber has written, you want to be off the prednisone and the imitrex for several days.  Verapamil seems to be less of an obstacle to busting.  Getting a working oxygen system is pretty essential to being able to drop those meds. You haven't said whether the oxygen that didn't work for you was at least 15 liters per minute using a non-rebreather mask.  It's true that there are a small number of people for whom oxygen just doesn't work, period, but for most people, it's just a matter of getting a proper setup.  (If you have not had a proper setup in the past -- my daughter, for example, was given an oxygen "concentrator" that could only put out a maximum of 8 liters per minute and she was given nasal "cannula" -- those things you stick into your nose -- and so she and her doctor believed, falsely that oxygen "didn't work for her -- then maybe your doctor would be willing to prescribe a proper one.  In that file I directed you to, there are links to official medical journals showing that 12-15 lpm and a non-rebreather mask are essential; you could show those to your doctor.)

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How much redbull should I drink? and how quickly? Cold or warm?

I guess you could try the giant-size one, or the mid-size (335 ml?). My daughter was helped quite a bit even by the smaller one.  Chug it down, as much as you can (I don't think that chugging it makes it more effective; just gets it into your system faster).  Cold is fine; I don't know of any reported differences between cold and warm.

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Questions on the RC Seeds. Can I use them while using everything else?

Imitrex is known to block the effects of RC seeds and the like. You may be able to get away with staying on the verap.

How much redbull should I drink? and how quickly? Cold or warm? 

A mid size can or shot so that you're getting around 100 mg caffeine. Chug it as fast as possible at onset of CH attack. I don't think cold or warm matters. Some CH'ers believe that the carbonation in the cans helps with quick absorption. I dunno about that - I think downing a shot in one second makes for pretty quick absorption, and helps you get to your freezing air breathing/welding O2 breathing or whatever else ya got faster.  :D

[Edit: just saw CHfather's post that went up while I was typing mine. You're the fastest gun this time CHF, but I'll get ya next time - meet me at high noon! :D. Anyhoo Crystal, I'm agreed with CHF, and will just add that some CH'ers even take the melatonin up to the 18-21 mg range (I don't actually know how safe that is though) to get night relief.]

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Also, be attuned to your heart rhythms if you're going to use energy drinks that contain taurine while taking verapamil. Both act as calcium channel blockers and can start to mess with the ol' ticker when taken together. When I was taking verapamil, I always limited myself to one (large) energy drink every 24 hours.

Edited to add: Now that busting has left me virtually pain-free for about 18 months, I drink as many or few energy drinks as I like. Still get occasional shadows, and a can of NOS will get rid of them in no time.

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You're being given very good advice, Crystal. The methods of aborting and preventing CH cycles and individual attacks that you'll read about here have been found to be effective by many of your fellow CH'ers. I'll only suggest that you watch a video of a presentation given by our group's founder, Bob Wold. It's an introduction to busting and the work we're doing here. It should answer many of your questions:

Welcome to our forum!

Ron

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Also, be attuned to your heart rhythms if you're going to use energy drinks that contain taurine while taking verapamil. Both act as calcium channel blockers and can start to mess with the ol' ticker when taken together.

Ooh good catch there Brew - I had plum forgot about that.  :-?

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