How Many Ya'll Are Chronic

[b.g.]

A lot of people here do find that their CH is very sensitive to changes in barometric pressure

Yup.

I'll second that notion.  Here in Northwest Ohio we have been all over the place weather-wise over the past couple of weeks and it's been taking it's toll (as usual this time of year).

70° and sunny one day, 43° and raining the next.

I wish mother nature would get her poop in a group.

[weatherman]

I wish mother nature would get her poop in a group.

Gotta agree with that......

Serious wind event, Sun-Mon-Tues, on the West Coast followed by a minor heat-wave on Wed has sent me screaming.  Worst series of CH I've had in at least a year.  Tree pollen count through the roof and the stress of 60 hr work weeks has not helped either.

Busted last night and after a few minor slap backs today, there is a huge improvement.  I also don't take any meds that would interfere with busting, so giving it another go early next week.  If I saw God last time, I'm gonna be God for this next one.

Thankfully, O2 still aborts fairly quickly.  Have gone through my usual 4 week supply in the last 5 days.  Time to refill!

Keep at it guys, that Beast can be a bitch but has its weaknesses.......

weatherman

[madmike]

Damn buddy I feel for you I really do.

I am going through a tough bout myself right know as well.

You really need to find a Doc that know Clusters like the back of their Hand... NOW.  And I don't nec. mean a "headaches clinic" I have had some bad experiences with some of these.

This site has provided me with excellent advise and support.  I cant tell how glad I have found it.  But you also need a knowledgeable doctor.  Keep going from one to the next until you find "the one"

I have yet to try "busting"  however I believe I am on that road.  I wish you success and relief.

[Clusterman59]

Hey All!!

I have been a chronic CHer since 1973 and had a 3 year remission way back in 79 through 82 and have been chronic ever since so i believe that's about 37 or 38 years of chronic madness! ha! I have been CH free for the last 165 days on Batches D3 regimen and counting! I never thought i would ever become CH free until i met Batch but there is hope!! Busting is also something i'm researching to see if i can knock out that friggin beast for good as with using the D3 regimen must be continued for the rest of my life, i would like another option. The great percentage of those who bust and end there CH is very intriguing and exciting thanks to Bob Wold!! Thanks for the nice welcome "Fun guy" and i look forward to becoming more involved in the cluster busters forum....

[Bejeeber]

37 or 38 years of chronic madness! ha! I have been CH free for the last 165 days on Batches D3 regimen and counting!

WOW.  Both to the thought that anyone could withstand that long of a chronic stretch, and to the incredible D3 results!  Now THAT has really gotten my attention regarding the D3. 

...had a 3 year remission way back in 79 through 82..

Might be worth thinking about whether you had ingested any busting substance during that time without realizing it was a busting substance.  8-) Lotsa CH'ers look back and realize they were PF back during a recreational phase of their life.

Or since you respond so well to D3 , were you per chance subject to a lot of sun exposure in 79-82?

[Donnie S]

Well your right on about the Nova Scotia weather.They say around here if ya dont like the weather wait 10 mins and its likely to change.I ve had my third busting on the seeds,seems to be helping but they have by no means stopped.

As far as a doc goes that knows anything about this thing around here,forget it,the only doc that ive been able to attach to anything concerning clusters in Nova Scotia seems to have relocated to a clinic in Maryland.We are kinda isolated here on the east coast,i would likely have to go to Ontario,which is half way across the country.Would like to try busting with the shrooms instead of seeds but just cant find any.Dunno if im just not doing enough of them or what.About 80ish last couple times,did my third bust fri night and was rolling around the floor at 3am this morn suckin on the 02 mask.Have ordered the optimask but it hasnt arrived yet.And the pressure or shadows on that side of my face have been almost constant for 3 days.

I dunno.......

[Donnie S]

My 02 provider cant even get their hands on a regulator that is higher then 15 lpm.When i told her what rate the best results were being obtained from she about fainted and told me icu at a hospital is the only place she knows that can 02 at that rate.Hopefully when my optimask arrives the 15 lpm will at least be more effective then it is now.

[b.g.]

My 02 provider cant even get their hands on a regulator that is higher then 15 lpm.When i told her what rate the best results were being obtained from she about fainted and told me icu at a hospital is the only place she knows that can 02 at that rate.Hopefully when my optimask arrives the 15 lpm will at least be more effective then it is now.

haha, yeah you can expect some strange looks from people when you go looking for high flow regulators.  People just don't know/understand.

What kind of tank do you have?  I normally have some extra 25lpm regulators for "D" and "E" tanks but I am fresh out at the moment.  I did just see some new ones listed for $25 though ... thats about $5 cheaper than I normally find them.

The o2ptimask will most definitely help, but it never hurts to have a 25lpm reg. just in case.

[Donnie S]

my tank size is MM.Pretty big one.Not big enough cause i drained it in 12 days lol.

[CHfather]

Donnie, what's happening with you now?  Any improvement?

[Donnie S]

tings seemed to e improving somehat after my fourth or fifth bust then last fri i was supposed to bust again.Had them soaked and ready but couldnt get them pounded up right as we was at girlfriends parents cottage and just couldnt make the noise to pound them up so i just swalowd them whole knowing it wasnt the same thing.My fault i should have had that covered. By monday i started gettin hit hard again but busted tues and will again today.Didnt know if just one bust not done right would screw it all up or not but i know now.I do not like doin the seeds and i find a hangover with them.Hioin to try the shrooms instead if i can find them.On the upside my mask arrived today so im hopin that will make a dif too.

Thanks for checkin in on me.Before i screwed up that bust i did have 5 good daya in a row and usually 3 days is about as good as it ever got and those were few and far between.

[CHfather]

Donnie,

It's nice to hear you had those five good days!  And your new mask should help, too.

(Standard procedure is pound first, to a rough powder, then soak for an hour or two.)

[Donnie S]

well damn i been soakin first then poundin later....still get plenty buzzed tho.So should they be stronger if soaked first,be nice to know before i find out the hard way lol.This mask is the ticket,the one my provider gave me was a joke for anybody supposed to be gettin high rate sraight 02.The taurine stuff in the energy drinks....can that be bought anywhere in pure form,the 5 hour shots up here are about $4 they work but are gonna have me in the poor house buying them

[CHfather]

some people have used taurine powder or capsules.  i guess you could stir the powder into a cup of coffee(???)

you're not the first person here to soak first, then pound.  since pound first/then soak is supposed to extract practically all of the LSA, it's hard for me to imagine that soak-pound would be stronger.  just guessing.

very happy about your mask working so well.

[Donnie S]

I could likely just spoon the taurine into me i doubt it could be worse then the seeds lol.Once again thanks Jerry

[Donnie S]

I found the taurine in capsule form.Will save me a tonne of money if it works the same that way.Only big hit ive had since the mon after the bust i screwed up 10 days ago was once again last night on a monday night after i busted on fri.Cant complain tho things are improving big time since i started hangin around this crowd lol.

[Bejeeber]

Hey Donnie, hopefully you're keeping in mind that it's the taurine/caffeine combo that's widely considered to be the ticket, hence CHf's mention of stirring the taurine into coffee. And my expounding here by mentioning other options like pre-prepared iced coffee or strong ice tea or other cheap caffeine drinks.  8-)

SUPER GLAD TO HEAR THINGS ARE IMPROVING BIG TIME!!  [smiley=thumbup.gif]

[Donnie S]

Ive set up tues and fri nights for busting and the only major hits ive had for 2 weeks have been on monday nights.As there is an extra night betwen busts compared to the days between tues and fri im wondering if im just not gettin quite enough fri night to keep the freak calm til tues night.Its possible but its also possible the freak is just being a freak lol.

ya been mixing the taurine in with a little strong coffee.If its gonna work im gettin the taurine dosage for about 10 cents compared to 3.50 for an energy shot/drink.Really hopin im not just at low end of my cycle and this is all an illusion,but hell i wil take it,best ive felt in 16 months.

[Bejeeber]

Well OK my concerns were entirely unfounded about whether caffeine was being included with the taurine (color me a worry wart  ), but I'll lay just one more on ya - from what I've read, taurine is very heat sensitive, often destroyed when cooking, and might be destroyed if added to real hot coffee.

[Donnie S]

Just warm enough enough to desolve....still cool enough to chug it all at once.

Whats your thoughts on busting fri nights and gettin hit hard on monday nights before my tues night bust.Do ya think im just not quite gettin enough on fri to get me through.Only happened 2 weeks in a row could just be a coincidence.But maybe a little extra juice in the punch fri nights wouldnt hurt to try.Ive tried everything else lol.

[CHfather]

Donnie, here's an alternative theory.  It is strongly believed here that people should wait about five days between busts, because of a phenomenon called "shutting the door," in which a bust blocks the receptors for about five days so that a dose taken less than five days after a previous dose will have no, or very little, effect.  Here's a file about that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130968

Some people find they can be successful with four days between busts, but your three days (Tuesday-Friday) is probably too little.  Can't say that for sure, of course.  Wish we could say more for sure.  But it's the accumulated experience/wisdom of a lot of folks.

So . . . it could be that your Friday dose is actually doing nothing for you because the receptors are still blocked from the Tuesday dose, and your Monday hits are the Tuesday dose wearing off, not the Friday dose wearing off.

I think most folks here would recommend trying to get five days between busts, or at least four.  Usually, the advice is that if you get extended pain-free time, try to keep stretching out the time between doses.

I doubt, personally, that it would just be a matter of taking more on Friday (though I guess you could try that and let us know what happens). In general this isn't like let's say pain meds, where the more you take the more relief you're likely to get. Since the amounts you are taking are generally working, I don't think taking more will work better.

Been wrong before; could be again.

[Donnie S]

Makes perfect sense,Jerry,as always and im gonna try it.Another thing im wondering and may even have read it somewhere,for about 3 days on the weekend i had just a normal headache,not cluster like at all,and had taken 3 or 4 tylenol couple times a day.This brand of tylenol has a small amount of codein in them.Do i remember reading about any opiate possibly blocking the busting effect ?

Im hopin so cause i just got hammered 3 times in 9 hours through the night and it would be nice it know it was nothing but my own dumbass fault

[Bejeeber]

I hesitate to continue to reply here Donnie, since I haven't been offering any actual useful info in this thread lately, but my impression from what I've read and seen reported is that unfortunately opiates can at least be partial busting blockers.  :-?

[Brad]

Hi gang!  Yes I am now officially a Chronic CH sufferer.  This cycle has lasted 9 months.   I have continued my Suma shots and O2 therapy (no D3 this time as it had the opposite effect as my first attempt), but am now reconsidering my decision to bust!  Im fed up with the pain and with mankinds version of "so called protecting the masses", from the natural medicines that they really need!

Good to see y'all again!

[alleyoop]

Sorry to just burst into the thread like that, now that I have read through it I see it was mostly a conversation between two people. :/

All threads are open to anyone who wishes to chime in Venifica.  We try to stay on topic as best as we can, but other than that, there are no restrictions.