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a sad hello...


dereksgirl
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well it has been almost two years, and like clock work, the beast is back, maybe a little early, but he is knocking at the door and bring my poor guy to his knees.

Life has been been so busy with the new baby girl, Ella, (9 months now) and homeschooling, and my oldest two starting college. Add a summer full of broken bones, food allergies and 3 months of strep throat being tosssed back and forth amongst the group (we're a pretty kissy and huggy sort-of-bunch)... well time just flies...

- I have only been able to browse the boards occasionally, but have you guys are always very very often in my thoughts... hows, Michael? Hows Ting?The BB, Pixie-elf........ the list goes on and on.....

I see some seeds in the very near future....

....so very thankful for this place...

-dg

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You and your guy helped so much when I first came to the board I will be eternally grateful for your generosity and kindness, and it makes me sad to know that you guys are suffering again.

Anything we can do, just ask.  I'm gonna send you some info on Mandrake.  Might help.

-Ricardo

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Hey DG.  A sad hello indeed.  But you're more ready this time!  Get those seeds today and get started, please. 

Since you've been away, there is more and more confirmation of the great value of a demand valve oxygen system.  I know money doesn't grow on trees there, but it's something I'd suggest you guys should consider.  '>http://94.100.244.217/gas_devices_and_therapies/regulators%20and%20demand%20valves.asp

  If not, maybe at least an O2ptimask?  http://www.clusterheadaches.com/khxc/

Sorry to say that the news is not great about everyone you asked about.  But I'd rather let them fill you in than speak for them.

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  • 2 weeks later...

Derek is getting his butt kicked. Worse ever. He won't try oxygen again, so it is just ice packs n red bull to try and make it through this second week. I have renewed gratitude for those of you who risk so much to share your stories... I wish I could do the same. Sad that I can't. But the beast is shaken, clawing and screaming, hoping for a knock out soon...

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Derek is getting his butt kicked. Worse ever. [highlight]He won't try oxygen again[/highlight], so it is just ice packs n red bull to try and make it through this second week. I have renewed gratitude for those of you who risk so much to share your stories... I wish I could do the same. Sad that I can't. But the beast is shaken, clawing and screaming, hoping for a knock out soon...

Why not?

    Potter

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He is stubborn, like you   ;D

He got with Batch early on, got all the right stuff, and didn't get any relief, I keep suggesting it once in a while, that he try again, but he won't. Maybe part of it not wanting to be strapped to a tank for 3 months... all I know is he won't, so the best I can do is try and find other things to help him and let him make his own decisions on which treatments he wants to use.

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Hello DG,

Congratulations on the new baby.

As to the 02, I know how stubborn clusterheads can be (I am one lol) and although it os one thing that helps us get through the clusters, it can also be a detriment. (or so I'm told)

One thing about using the psychedelics, is that often, they make 02 work even better than it did before using them. Not sure why but it's something I hear over and over.

Also, no one is "strapped to the 02 tanks" ...unless its working and it's worth it.

I know I'm probably preaching to the choir, but thats always so much easier than preaching to someone that needs it LOL.

I hope the seeds start working soon.

Bob

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Many thanks Bob,

I had to find my big girl pants before I came back to this thread.  :)

I do understand how very difficult it is for all of you when you want so badly to help, and it seems like they won't take the advice. I wish he would try again too... maybe one day he will.

I will pass the info on to him. Hope you grandbaby is doing well....

I am very grateful for all your work and the many people here who help in so many ways.

-dg

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One thing that should be noted as far as Derek not using O2...He's got a regulator that goes to SIXTY LPMs.  My bet is that it would be hard to be doing it wrong at that high a flow rate, and I would bet it's really easy to tell if it's working.  I went through a lot of O2 before I gave up and acknowledged that it wasn't working and I'm hesitant to try again because all it has been is disappointment.  I don't blame him at all for not attempting the O2 anymore.  If it doesn't help the cluster all it is is infuriating and you would be hard pressed to get me to try it again.

If his Neuro is open to it I bet my Neuro would be willing to send out a little info on the Ketamine he has been prescribing patients.  Changed my life.

-Ricardo

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What Ricardo said, because after reading this...

..He got with Batch early on, got all the right stuff, and didn't get any relief..

It appears as if Derek very well may be one of those rare unfortunates for whom O2 just doesn't work, unthinkable as that is for the vast majority of us for whom it does work.  :'(

I think if I was Derek I'd be investigating the Ketamine as Ricardo mentioned.

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