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zenchow

really really exausted...very little sleep in days

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just slept for about an hour...woke from an elaborate dream involving running from something while on some non existent drug that was effecting my breathing...I may have been hyperventilating. upon waking from the dream I found myself quickly in a k-7 situation. I have just recovered :o

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I live in Northwest Arkansas USA in the Ozark mountains near Fayetteville. I am 44 yrs old and have been experiencing these crazy headaches for about 4 years. They usually start during a head cold or hay fever type of event. I do not have health insurance, so I have been combating them mostly on my own.

I found this site about two weeks ago and have been obsessively reading the info here. Thank you for being here. It is so wonderful to finally know what's going on.

I am currently in the third week of the most consistant episode yet. And am very tired...getting headaches one hour after going to sleep every time.

Thanks to some of the suggestions from here the intensity of the attacts are down and I have been able to manage most of the pain...redbull who would've have thought.

I have missed a few days of work...but I now believe I may survive.  I will find a way to see a headache specialist and will get the o2 as soon as I can.

I went to a walk in clinic and they agree with the cluster headache diagnosis and I took a round of Predizone.

I am take the D3, fish oil, calcium and magnesium regime.

I am taking 10mg of melitonin before bed as well as 1mg of xanex (unperscribed) also taking B complex vitamins and vit C. drinking lots of water.

The sleeping issues are really taking there toll on me however...I am very shaky and generally confused...any sugestions would be appriciated ... Sorry about spelling and grammer mistakes ... not at my best right now.

I currently have feelers out for busting options. Sounds much better than most of the meds that you guys talk about.

This site has already been such a help to me...THANK YOU

reposted from the CH.com board

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don't think I got any real sleep but definitely got another headache...not as strong...not as long

the energy drinks don't seem to be helping as much as they did earlier in the week.

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Hey Zenchow - well I bet the busting option could really help you, I hope you're able to get ahold of some busting materials ASAP.

Although some of us find that Rivea Corymbosa seeds don't seem to be as strong acting as mushrooms for instance, at least the RC is legal to mail order and possess (it's relatively cheap too), so that could be something you can look into while awaiting the big busting guns.  8-)

Also please do look into that welding O2 we were yakking about over at the ch.com board. Besides no prescription being required, from what I've heard it's also cheaper.  8-)

But meanwhile, today, none of that is going to do you any good, granted, so FWIW here's what I do that can abort my hits when no meds/treatments are available (although it mainly just works for me during the first ramp up weeks of an episode):

1) At onset, run to the car and deep breathe freezing air from the blasting A/C vent through your nose. Combined with an energy drink and possibly ice cubes in your mouth this might abort an attack.

2) Ultra vigorous sprint til you drop type exercise at onset.

(I'm not the only one who can potentially kill a hit with these techniques BTW, I've seen several others report some success)

Hang in there Zen, it sounds like you're poised to be treating this stinking beast to a walloping counter punch or 3.  8-)

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zenchow, i think everyone here can understand how you feel -- the pain, the fear, the exhaustion, the wooziness.  it's horrible.  AND IT WILL GET BETTER.  it might even become just a distant memory to you.  the oxygen will start changing things, and busting will almost certainly take care of the rest. 

bejeeber is right -- order some rc seeds now.  they're not very expensive.  maybe you can also go for overnight delivery, or some relatively rapid delivery methods.  rc will do the job: in fact, to slightly disagree with bejeeber, there are some who think that lsa (the active ingredient in rc) is more potent or effective against ch than mushrooms.  our fearless leader, psiloscribe (bob wold), has said as much.  the problem is that it's hard to be very precise about dosing with rc because the seeds' strength varies, but if you take enough, that's not a problem.  i just don't want you to think that rc is a "second class" or "second rate" busting method.  here are some sources for seeds:

http://www.ethnobotanicals.com

http://www.iamshaman.com

www.psychoactiveherbs.com

www.shamansgarden.com

and here are the names of some doctors who have been recommended by people with ch.  they might be your best bet for finding someone who understands ch and might help you get oxygen:

Fayetteville:

Dr. Joseph R. O'Connell (PCP)

FirstCare Fayettevile North

Fort Smith:

Dr. William L. Griggs

Southwest Neurological Institute

Dr. Duane L. Birky

Sparks Neurology Center

Van Buren:

Dr. R. Wendell Ross (PCP)

Summit Medical Center - Cornerstone Clinic

i'm sorry the D3 doesn't seem to be helping you, but i'd stick with it because it might kick in.  it's been quite good for quite a few people.

know you have understanding friends here who will do all they can for you.  it's gonna get better.

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just had another attack, different than the others ... duller maybe k-5 or 6 seemed almost like some sort of rebound from the big one

I can not possibly imagine trying to run or do aerobics during these bigger attacks I can barely walk during them

been taking steam showers...holding scalding hot cloths on my face...slowly pacing by the microwave. heat cloth for 10 seconds, apply to face for about a minute or 2, rinse and repeat. lots of rocking and moaning. Tried the head in the freezer trick that helped some.

have decided to bite the financial bullet and try to see a headache specialist a.s.a.p

Thank you for the suggestions and support, please keep em coming...It's gonna be a long day :(

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I use spinning class to abort attacks and shadows. But you really need to give it all. One can of energy drink and bring lots of cold water and start pedaling. Works for me and also make my days better in general, maybe cause you get higher o2 levels in your blood etc, don`t know but more i exercise, better i feel.

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CHfather makes a very good point about how at least some CH'ers find RC to actually be a stronger busting agent - my previous commentary is colored by my personal experience and what I've seen a couple others report, but we all react differently.

I guess I should just say if you try one busting approach without results, don't get too discouraged, the next one you try may do the trick.

And since the head in the freezer trick helped some, you might still wanna try the car A/C thing - I find it provides a stronger, more effective stream of cold air than the freezer.

I doubt exercising between hits will help all that much - it's more of the sort of thing where at the very first twinge of an attack you BOLT, and if it works, you will have aborted the attack before it has gotten very strong.

Cool that razorPP lives by you!  :)

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update, had another big attack, a k-8 while my wife was away buying more energy drinks...tried everything I could think of to abort it early to no avail. Used hyperventation to control the pain...or to distract myself from the pain, not sure which. it lasted about 30 mins. after it was over I leaned back to relax and fell asleep for about and hour, triggering a K-6 attack.

the upside is I got a little rest...the downside is this has been the most painful day of my life. But I'm still here! ;)

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zenchow, my daughter had 8s and 9s for several years (episodic, so we're talking about a total of a year or more) with nothing at all to treat them, except that sometimes she would chew on coffee beans.  oxygen and busting saved her life (and D3 now seems also to have been extremely beneficial).  some of us have a superstition about a jinx related to talking about being pain-free (PF), so i will only say that her life is completely different now.  you will make it. you will make it.

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Back off the caffeine, you are rebounding big time. You need to break the immediate cycle and abort now; in your neck of the woods finding busting materials should be very possible, but first things first:

1. You might want to try to stay away from heat and heat treatments. Try Ice, cold packs, frozen vegetables, anything, immediately at the site of the most obvious pain. If its in your upper palate, use ice water, hold it and spit. Immediately applied cold can abort by itself, if you can catch it quick. Put the ice on and keep it on as long as necessary.

2. Try not to hyperventilate. Breathe consciously and slowly and stress and linger on your actual exhale, long but shallow inhale. This technique can deflect perceived pain.

3. I understand not wanting to move only too well, but the exercise point is valid, it diverts blood volume away from cranial vessels, so try this, but only in the early stages of an attack, doing it in the midst of a full blower is torture: Do about 15-20 quick push ups, then stop and hold about halfway down...for several moments, then repeat a few times. This can also naturally increase your body's oxygen demand.

4. You mentioning that your episodes commence after a cold or allergy type event leads to this suggestion: Examine your lifestyle for triggers. Most episodics can drink alcohol, for example, except when in cycle. Somewhere around here is a list of common triggers, cigarettes are a huge one, so is alcohol, marijuana.. (basically all the fun stuff). Cutting triggers can make a difference in as little as 48 hours.

5. You don't say what if any meds you are taking, and that could qualify this suggestion, but simple aspirin (real aspirin, not tylenol or alleve) can help with your secondary triggered pain, it also has vasoconstrictive effect and it thins down your blood volume.

The relentless night shit is the absolute worst. I lived where you are now for many years, and I fervently hope you feel better soon. Don't despair, they are absolutely right..it gets much better.

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Zen,

You have everyone here pulling for you!!  I'm just coming out of a regular 'night  hit' cycle myself.  They suck worse than anyone without CH can imagine!

I 100% agree with Les - Any type of heat increases the pain for me.  Cold reduces the pain.  No hot showers, hot towels etc.  (causes blood vessel dilation, which is counter to the blood vessel restriction we seek)

You need 100% Oxygen (O2).  Before I started keeping tanks of O2 at the house I made several trips to urgent care centers.  (Emergency rooms are worthless, as I never once was actually seen while having an attack.  The wait was always so long my attacks were over by the time they called me).  Even O2 at an urgent care center may not work well since it may take too long to start the O2. 

For O2 the quicker the better.  You need to get on it as soon as you feel an attack coming on.  Welders O2, if you can't get a prescription from your doctor quickly enough.

Good luck and PF wishes!

Jeff

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Zenchow,  welcome to this great board.  Some real great people here.  Not to sound to "corny", but I can actually feel and see people truely caring on this site.  AWSOME !  Anyway, I am right there with you.  Currently in a MEAN cycle.  Evening hits.  Averaging three(3).  Last night was bad !  I was soaking wet with sweat after the hit left.  I know exactlly what your going through and it's probaly safe to say, so does all the people who have respond.  Try the D3 regime.  I think it's kinda working for me.  I go three to four days with multiple hits, THEN 2-3 days of PF.  I think its from D3 and O2.  Go get some Oxygen from a welding supply shop.  CHEAP !  Breathe that stuff like les genser suggested.  Concentrate on breathing.  Really try to focus on your breathing.  I did that last night and it helped.  (Thanks les ganser !)  Like you, I was slamming energy drinks big time.  RockStars.  High caffiene.  Like 6-9 a day.  I was told the caffiene was causing rebounds.  Can be just as bad.  I cut back.  Seems to be a little better.  One thing about me is that heat & humidity is a FOR SURE trigger.  I have to stay very cool.  I can feel the SOB coming on if I go out here in this high heat/humidity.  It sucks, I know.  I've been to that emontional point you mentioned.  Dents in drywall from hitting it.  Crying.  I purposely wear a crew cut so I don't pull  my hair anymore.  Hang in there !  It will get better.  It will !  This network of people here REALLY CARE !  Try the asprin.  It works.  The Oxygen.  It works.  Ice, (one of my bestfriends now), works.  I find when I can cool down, really cool down, it helps to alleviate the pain.  We are here for you.  Prayers for you and your family.

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Thanks everybody...things are much better today

when the night hits came last night I got up and slammed 8oz of cold water instead of redbull...then went outside where I have a ski slope cleverly disguised as a driveway...I walked down the driveway and then sprinted back up. did this 4 or 5 times which got my heart rate up... came back in, did some deep breathing, drank more water and was ready to go back to bed. did this entire process 3 times last night. after the last time I was able to sleep for 4 hrs ;D

am taking the day off work without pay, just some minor issues so far today, nothing I can't handle. Currently researching possible Dr.s

Tank You all, for all the suggestions and support!

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Hi zenchow,

If you haven't already, order RC seeds today! They're going to be your best bet in the short run. Virtually everyone finds that hyperventilating oxygen through a non-rebreather mask works. It is their go-to best friend when a HA is imminent. You NEED to get hooked up with a proper set-up ASAP. Read what you can about psychedelics and their use in aborting CH. LSD and Psilocybe mushrooms are the most readily available busting agents around. They're illegal but they flat out work. You have to decide if you're willing to go that route and if so begin your search. It could take a while. Lots of information in the ClusterBuster Files, http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files. Ask questions here. Everyone is anxious to help you.

Ron

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SEEDS ARE ORDERED!! will shoot for drop date of friday night

next order of business is the detox process

mostly I am just on lots of vitamins I do take 1mg of xanex each nite before bed

as always keep the positive thoughts coming please

and continue to add suggestions as you think of them

Thank you to you all

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SEEDS ARE ORDERED!! will shoot for drop date of friday night

next order of business is the detox process

Wish you good luck with detoxing and busting. Remember, detoxing can be very hard but in the end if you are ready to bust and you finally get some relief you are a happy person  ;)

Wish you good luck and PF days.

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