really really exausted...very little sleep in days

[clustermom13]

Just so you know, detox helps clear the path for these alts to work, but given the shape you are in, it is not imperative to do before your first dose. 

When those seeds get there, crush about 35 of em, and soak for one hour in bottled drinking water, only a shot glass is all you need.  Drink the entire concoction, but have something like OJ ready to drink after, cause it is NASTY!  Just remind yourself before you drink it that there is NOTHING worse that what you have already been going through.

Make sure you don't eat for like 2 hours prior as well.  And wait about the same after dosing before eating.

Be prepared, you may get hit, AND HARD, during the dose, or even right after it.  That is the beast fighting back, just remember it is part of the process.  Otherwise, you may notice increased activity anytime in the following 24 - 48 hours.  Don't distress, it will pass and in its wake, you will observe a new, hopefully less intense pattern.

All the while, you will be detoxing, and by the time your next dose can be administered (5-7 days later), your detox will be done, and they will work even better.

[zenchow]

Just wrote a very long and heart felt post

my shaky fingers hit a wrong button and it all disappeared

to summarize went to the ouch recommended Dr in my area today...very positive experience. was given an O2 script and a shot of toradol and a script of same...any info on toradol would be appreciated.

went to the medical supply place where difficulties began

they gave me an E tank with a 5 lpm regulator and a cannula

it was all they seemed to have...clueless as to CH

so now when I am in the throws of an attack, I can look at my shiny new O2 setup while rocking and moaning :

will address these issues tomorrow...suggestions please

My wife and I am very overwhelmed by the support all of you have provided ;D

We are even thinking of going to Chicago this September if possible for the conference.

I am keeping a positive attitude, and know I can rise up from the depths of hell and regain my life back.

much love and thanks to you all, I know I could never have made it this far without you.

When I do over come, I with remain to help others...and I feel a special calling to give what little I can back to this very special organization and to my new brothers and sisters in pain.

I may feel the pain in my head but I feel the love in my heart

for all of you and for all that you do.

Thank You,

Wade

[ThatHurtsMyHead]

Wade,

We're all in this together! 

Like you, I hope to be able to give back some portion of the support that's been given to me.

If you run into issues getting the proper mask and regulator.  I'd highly recommend picking up your own.  New O2 regulators are quite cheap on ebay.  Don't bother with the used ones, as there are enough companies selling new ones for $20 to $40.  I just recently picked up two 15 liter regulators for spares.  I'm still using the non-rebreather masks from the med supply company, but have heard nothing but the highest reviews from the Opti mask they sell on the ouch.com website (I think it's about $27).  I get relief with 15lpm, but many on here recommend the 25lpm. 

Here's a search on ebay for New, 15 liter, O2 regulators:

http://shop.ebay.com/i.html?_nkw=oxygen+regulator+15+new&_sacat=0&_odkw=oxygen+regulator+15&_osacat=0&_trksid=p3286.c0.m270.l1313

Here's the cheapest 25 liter I could find:

http://cgi.ebay.com/CGA870-Regulator-BARB-2-DISS-Power-Take-Offs-0-25-LPM-/130539156984?pt=LH_DefaultDomain_0&hash=item1e64bd75f8

Make sure you get the proper fitting for your tank.  There are three types but you'll just need to match what you already have with the E tank you have.

At any point of the year I have between 5 and 8 'E' tanks around the house.  Make sure you get multiple tanks, as it's easy to go through one tank in a night.  (But believe me the O2 works!) 

PF wishes!!

Jeff

[CHfather]

wade, first thing to do, of course, is call your O2 supplier (have your wife do it, probably) and insist, demand, beg, whatever.  this is their job. call the doctor, too -- it seems surprising that he/she would refer you to such a poorly-prepared supplier.  you also need an m tank -- at least one -- as well as the e tank.  you'll go through the e tank in no time.

even if the supplier does not have a proper 15 lpm or more regulator, they should have large tanks and non-rebreather masks.  the problem with getting a regulator from ebay is that they generally will not ship overnight or in any fast way. you can get overnight delivery of a regulator from some online places.  some are listed at the end of this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files

(you will also see at that file that these kinds of problems with suppliers are not unusual at all.)

alternatively, you can get large tanks and a regulator instantly at a welding supply place.  if there's a harbor freight store near you, for example, they will have it.  airgas store, too.  you'll want the mask (and maybe your supplier will get that to you), but there are workarounds for having no mask, too, i think.

keep us fully informed and someone here will have strategies for quickly getting something working. 

[Bejeeber]

I can rise up from the depths of hell and regain my life back

Without a doubt!

Sorry to hear of the O2 setback though - this is unfortunately a very common experience when dealing with O2 suppliers.

I'll just echo the recommendations for a minimum 25 LPM regulator and an optimask.

[clustermom13]

any info on toradol would be appreciated.

First it depends on if your prescription is for pills or injections.

The pills, slow, most likely by the time they are absorbed, your headache will be gone anyway. 

The injections we have firsthand knowledge of.  Prior to clusterbusters, my son used them A LOT!.  He felt fortunate to be prescribed basically as much as he needed.  Here's the problem:  the more he used it, the more he needed.  Oh it was plenty effective enough, but it caused rebounds.  He got to the point where he would use it to abort a moderate cluster, and then within an hour he would pay with a killer!  It became not worth the price of the rebound.  Toradol took him to the highest heights of severity and frequency.  Ask him today if he would like a script and he would say FECK NO!

That was our experience.

Be careful, and use it sparingly until you can get busted.  I would advise against using it for very long, or very frequently.

[tingeling]

We are even thinking of going to Chicago this September if possible for the conference.

I am keeping a positive attitude, and know I can rise up from the depths of hell and regain my life back.

Come to conference!! I`m travelling from Norway to Chicago, hoping to meet  as many as possible!!

True words, this treatment make us rise from the depths of hell, you couldn't have said it better.

[Guest]

Get the stuff Jeff suggested and then enjoy the relief. Hang tough.

all the best

the bb

[zenchow]

got a full night's sleep last night with no attacks YEA!

had a small attack later this morning...no big deal

starting to feel better over all...but my head is still sore and there is still constant low levels of pain...in my younger days I would have called this a bad hangover...now I call it progress!

still no help from the med supply people... screw 'em I'll order my own stuff

[shaggyparasol]

Hi Zen. I definitely recommend taking matters into your own hands.  Seeds, oxygen, order mask and regulator as needed.  People here and ch.com know more about minimizing and negating the effects of our disorder than any doctor I have met or heard from. 

You have gotten great advice so far and we all have similar stories.  Hang in there because once you figure it out it gets easier and mostly pain free!  Psilocybin for me and I figure I have avoided about 200 attacks in the last 3 years.

--Shaggy

[tingeling]

Hang in there because once you figure it out it gets easier and mostly pain free! 

True words

[ThatHurtsMyHead]

Definitely Pain Free here right now!!!!  Those on this board know what they're talking about!.  

You get your Oxygen setup yet?

Jeff

[zenchow]

have tank...15 lpm regulator has been ordered and is in transit...as is a mask

I've had good nites sleep for 5 nites now, until tonite.

I went to bed at midnight and woke at 1:30 with a low level attack.

busted friday nite with RC Seeds...I really thought my cluster cycle was ending.

Oh well...headache is under control, so I'll head back to bed and try again.

Can't complain...this week has been so much better than the last few!!

[clustermom13]

So glad that you are feeling better.  Just keep after it.

[Bejeeber]

Yeah Zenchow! Sounds to me like the very welcome signs of the end of  a cycle indeed. 

Keep after it as clustermom suggested, and you just may be able to thwart the entire next cycle - how cool would that be?!    8-)

[CHfather]

agreed -- great news.  and thanks for letting us know.  do you mind saying how much rc you used (how many seeds)? and so far, i take it, you have busted just one time?

[zenchow]

ok so here is what I did... I've used psychedelics before, so I kinda wanted to enjoy the experience, and felt like I deserved a little fun after the month of hell I had been though. I ground up 100 seeds, with the intention to share them with my wife, in a coffee grinder. added about 6 oz of dechlorinated water and a few squirts of lemon juice...put in the fridge for 2 hours stirring occasionally. divided the vile concoction in half...and slugged my half down. My wife made the mistake of stopping in the middle of her half which cause her to taste it...so that was it for her and I drank the rest. My guess would be I had about 70-75 seeds. wife felt very little effects...made her a little sleepy. I am fairly sensitive to psycadelics, so I felt lots of effects after about an hour.

some stomach cramping and a little nausia at first. It was very much a body buzz...my mind stayed pretty much intact. very limited visuals... some wall breathing in low light but not much. Time perception changed...overall similar body sensations to mushrooms and LSD but none of the loss of ego or the changes in general emotional perception. took a walk down to the lake and enjoyed a clear starry nite with an almost full moon...one star in particular was pulsating with multiple colors this was the strongest visual effect of the nite...this star seemed to move closer and farther from me for quite some time...walked back home and listed to a wilco concert on the head phones. overall I was very restless for most of the nite. dosed at 10pm Friday began trip around 11:30 and stayed up until 5am...had fun, would do the seeds again but would prefer the alternatives.

The next day I had a few lower level headaches... saturday nite I slept well... sunday was mostly pain free. Worked on monday felt pretty good overall. tusday I had some low level shadows and then had the one nite hit tuesday nite/wed morning ... pretty strong headache all day wed, worked though it then came home and iced my head for 3 hrs and it eventually subsided. slept good wed nite and today I felt better overall than I have in a month. For the first time in several weeks I am not afraid to go to sleep. I don't really know how much of this improvement is due to the bust or if it is just the natural end of the cycle. It was the first time to bust although obviously not my first use of psychedelics...although it has been about 4 year since my last trip. I always look as it as a cheap vacation and a chance to clear my mind and spiritually recharge, I have never considered it to be a party drug, but more of a spiritual experience...I am an old hippy . I realize that this was probably more info than you were actually asking for...sorry if it was long winded.

I hope every one of you have a pain free nite and pleasant dreams.

Wade 

[Oscar]

Glad to read you got some PF nights and the busting really helps you.

Busting can bring you on a low cycle. Just wait what happens after a couple of days. When things goes bad again it's time to bust again. Wait at least 5 days if you can.

I'm happy for you you enjoyed the seeds and the trip. CH causes so much pain and bad life that we deserve it to at least enjoy our medicine. I always tried the best out of it and also my wife tried to be as good as possible for me to enjoy it. But be careful with tripping definitely if your trip with your wife, one has to be a babysitter as trips can go really bad.

Please keep on posting your results. Wish you a lot of PF days 

Oscar

[CHfather]

wonderful news, wade.  i think in some ways we all are not just gladdened by your success, but many of us actually feel your relief.

I don't really know how much of this improvement is due to the bust or if it is just the natural end of the cycle.

Wade, we hear this so much that I've come to think it's surely at least somewhat related to the busting . . . not that it really matters, as long as you're getting relief . . . and because we know that busting will stop or even prevent or delay your next cycle.

re your wife: some people find that washing down the seed potion with cranberry juice or orange juice will relieve the bad taste.

the question about oxygen is still in the air.  even if your cycle is ending, you might really want to get it now, or soon.  if you get a strong hit and you experience how smoothly oxygen erases it, you'll have less fear about future cycles, which is a big psychological boost.

[CHfather]

Chris, please notice that I have started a new thread, titled TO CHRIS1331, with a response to you, in this section of the site.  It will be better for this to have its own thread, I think.

[zenchow]

15 lpm regulator arrived today along with a cheap non-rebreather mask...I'll get the optimask later...lost alot of hours at work this month, things are kinda tight. this should work for now.

[CHfather]

15 lpm regulator arrived today along with a cheap non-rebreather mask...I'll get the optimask later...lost alot of hours at work this month, things are kinda tight. this should work for now. 

thanks, wade.  for most people, what you have is sufficient.  some people suggest cutting off the strap on the back of your mask, so you don't keep breathing in O2 (and wasting it) if you fall asleep.  also, be sure that any open holes without valves on the sides of the mask are blocked when you breathe in, so you get only O2 and not air from the room. Here's what it says at the ch.com oxygen page (there's a photo there, too). You can read the whole thing at http://www.clusterheadaches.com/O2/index.html

>>>Notice the little round white disks on the side of the mask.  These control the exhaled air, and the outside air.  If there is not one on each side, either tape over the other one, or (as I do) place your thumb over the holes, during an inhalation, and then remove the thumb during an exhalation.  If these valves are not present, or in good flexible condition, you will not get the full 100% oxygen that is required.<<<

[fireface]

Sounds like you're on the down side...I did shrooms after 3 months of what you are going through...Did it work or was I just done with my cycle ? Next year will tell... I feel for you, Man...Horrific situation..

[zenchow]

yes cycle does seem to be over. I have now worked two full weeks, and am just having normal stress headaches... no cluster attacks... and I am equipped for the next round. So bring it on!  8-) (just not for a while please)

I can't thank you guys enough, just knowing your here makes a huge difference ;D

[CHfather]

enjoy, wade, and congratulations for taking control.  some people suggest a bust between cycles, maybe three months from now if you're on the fairly typical twice-a-year schedule, and also to be sure to bust at the first sign of a new cycle (some people here have regretted waiting too long).   i would also recommend that you do the maintenance-level D3 program: 5 IU of D3; couple of calcium citrate tablets; and 2-4 mg of fish oil.  probably can't hurt, and lots of evidence that it helps.