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  New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › And so the experiment begins
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And so the experiment begins (Read 17678 times)
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Re: And so the experiment begins
Reply #50 - Jun 1st, 2010 at 6:31am  
If you are experiencing success between doses, and you're starting to stretch the doses out longer than 5 days apart, then by all means, I think you should continue.

Check your PM's.
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Re: And so the experiment begins
Reply #51 - Jun 1st, 2010 at 9:51pm  
Very very encouraging day. Hit at 12:30 aborted easily with 02 at 12 lpm, hit again at 3:40 again 02 at 12 lpm for a few minutes and then one more time at 6:50 same abort time and lpm. I also have not had a nocturnal hit for 10 days and I am down to 1 red bull a day and an extra cup of coffee or two to get rid of lingering shadows between hits. I will be preparing dose 4 tomorrow morning to take tomorrow night which is a week between doses. I bought a better pepper mill today as the coffee grinder tends to turn the product into dust and I lose some of it.  I will let you know how that works out tomorrow night before I drink my "cocktail". I am going to keep the dose at 60 seeds instead of increasing it since I have had good results for the week. I hope this journal of my experiment has been helpful in some way to anyone reading it and I wish everyone a pain free night.

David Smiley Smiley Smiley
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Re: And so the experiment begins
Reply #52 - Jun 2nd, 2010 at 10:01pm  
As promised I am writing this PRIOR to drinking my cocktail for dose #4. First I have to say I found a better pepper mill, and crushing this morning was not as easy as the coffee grinder but I lost less little babies to the dust the grinder causes. Really very interesting day, missed my usual 12:30ish attack just never happened. First of the day didn't occur till 3:50pm and it was very mild and easily aborted with a few minutes of 02. Nothing after that till another small one at 7pm same abort, for the rest of tonight no attacks however a persistent shadow and a head banging normal headache around the circumference of my head (OK so maybe normal is the wrong word but for us it is close). I am wondering if that is lack of caffeine related issue as I have avoided red bull and coffee since 2pm prepping for tonight's dose. I am once again extremely encouraged that a true cluster buster can occur but as we all know the Devil has many tricks. Hang in there Birdman and I will see everyone tomorrow night.

PFDs to all

David Smiley
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Re: And so the experiment begins
Reply #53 - Jun 3rd, 2010 at 9:03am  
Hope your cocktail goes well.  The caffeine withdrawals can feel pretty intense.  Please let me know how it goes.  Living on 02 and trex or zomig over here
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Re: And so the experiment begins
Reply #54 - Jun 3rd, 2010 at 11:27pm  
Pretty good day post dose 4. Two hits same times pretty much as yesterday only they both were harder to abort and the second one was accompanied by the same "normal" headbanging headache as last nights so that one was kind of hard to deal with. I went ahead and had a red bull after the hit and then did a 2 mile walk and it cleared up. If tomorrow is the same  and so on I probably won't post till I have something new to report, like hopefully a PFD ( I keep thinking as the day progress's this will be the day and then ah NO. I must say however I am overall very happy with the experiment so far, at this point normally in my cycle I would be at 8-10 a day including nocturnal hits every two hours through the night. One of the best parts is a full nights sleep and my m60 tank lasted almost all week and I only used one and half E tanks so saving some money there LOL. Wishing all many PFDs.

David Smiley
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Re: And so the experiment begins
Reply #55 - Jun 4th, 2010 at 8:11am  
David,
I am both extremely happy and jealous that you have found sleep filled nights.  What I woulddn't give for just one right now.  Hope that thie fourth dose gets you complete relief in a day or so.  Please let me know either way.  Tryying to send positive vibes from NYC to your next of the woods.  Not easy though, but I am trying.
Tim
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Re: And so the experiment begins
Reply #56 - Jun 4th, 2010 at 8:49pm  
davidj35 wrote on May 25th, 2010 at 12:17am:
Just out of curiosity does anyone else get a feeling of wellness and joy about 20 seconds before the pain snaps shut? I find this happens at times and I know before the pain ends that I am only moments away. When this occurs the pain just snaps off like shutting off a light (this happened on the 6:23 hit and has happened before). Other times the pain subsides slowly and lingers for a few minutes before ebbing away. Though that has nothing to do with my adventure in cluster-busting I was just curious.


Ya this happens almost every time for me.  I assume its my body's endorphins are kicking in.  I love the feeling because i know it's over for the time being.
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Re: And so the experiment begins
Reply #57 - Jun 4th, 2010 at 10:26pm  
I can't help myself, I have to post tonight, it is becoming a habit LOL. I could ALMOST call this a PFD, one minor hit that took 2 minutes to abort and then I thought I was getting one, shadow, twinge, sharp pain back of the head but by the time I strapped on the mask and turned on the 02 it was gone. I am so freakin stoked I might try to play golf this weekend (of course I will hide a D tank in my bag just in case). No headbanging regular headache either and The METS won so a great day. PFDAN to all and I can't wait to post a true PFD report.

David Smiley Smiley

PS: Thanks Jeremy glad to know I am not the only one.
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Re: And so the experiment begins
Reply #58 - Jun 5th, 2010 at 1:27am  
Jeremy365 wrote on Jun 4th, 2010 at 8:49pm:
davidj35 wrote on May 25th, 2010 at 12:17am:
Just out of curiosity does anyone else get a feeling of wellness and joy about 20 seconds before the pain snaps shut? I find this happens at times and I know before the pain ends that I am only moments away. When this occurs the pain just snaps off like shutting off a light (this happened on the 6:23 hit and has happened before). Other times the pain subsides slowly and lingers for a few minutes before ebbing away. Though that has nothing to do with my adventure in cluster-busting I was just curious.


Ya this happens almost every time for me.  I assume its my body's endorphins are kicking in.  I love the feeling because i know it's over for the time being.




ditto

I have also had a recurring "cool water" sensation that feels as tho it's trickling inside the affected side, which is now the right side.  weird, huh?
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Re: And so the experiment begins
Reply #59 - Jun 5th, 2010 at 11:36am  
Cindy,

I never use the word weird with our "condition" because the whole freaking thing is so weird LOL.
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Re: And so the experiment begins
Reply #60 - Jun 7th, 2010 at 2:23pm  
Exactly!


Dose 4 still going well for you David?  Dose 3 was the same night for me as your dose 4!  I just want to reply "ditto" so many times after your journal entries!
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Re: And so the experiment begins
Reply #61 - Jun 8th, 2010 at 10:20am  
It has been 3 days since my last post so a quick update is in order I guess. Nothing really has changed much, I am still getting 2 to 3 minor attacks a day that are easily aborted with 02 if I get to it quick enough. I am going to do one last dose towards the end of this week which will be 10 days in between doses. If at that point I am still in this cycle I am going to have to go back to using my 50mg imitrex pills as a preventative at times in order to do my job. I haven't been able to go on evening dinner or networking events for the past few weeks for fear of an attack and leaving my clients sitting at a restaurant table by themselves for 15 to 20 minutes and consequently my sales have fallen off dramatically. This experiment has been 90% successful and I am thankful I found this site and all of the information to give it a go. If I don't break this cycle I am going to look into the HBWR seeds (sold out on the site I get the RC ones from so if anyone knows of any in stock please let me know), after getting my sales back up and start over using those. I will post again when I have anything worth talking about. PFDAN to all.

David
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Re: And so the experiment begins
Reply #62 - Jun 8th, 2010 at 1:12pm  
I really am encouraged by your 90% relief statement and wanted to tell you so?

Do you have a client that you could "test" an evening out who might be more understanding than others?  I totally understand the juxtaposition you're in being in sales.  One of my worst cycles (before becoming chronic in 2008) was in 1993.  Single mom, outside sales representative and 100% commissioned based for our income.  I went out on a limb and shared with one of my buyers (Lumberjack Building Supplies) what was going on in my life.  His brother had CH!  Blanket PO's for every Lumberjack Building Supply yard in California!  I'm just sayin........

hugs,
Cindy
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Re: And so the experiment begins
Reply #63 - Jun 8th, 2010 at 2:20pm  
Thanks for the input Cindy, I have told some current clients over the years and they are okay with it. My problem is that I am with a new company (hence the no insurance yet) and they gave me a bigger territory where I have no existing clients. I know that I can turn it on in the next few weeks and get my sales back up, (I am 100% commission as well) it is just a little frustrating to not be out there selling as much as I usually do. When are you going for dose 4 and where are you on your attacks? Talk to you soon, as always it is great to hear from you.

David Smiley
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Re: And so the experiment begins
Reply #64 - Jun 8th, 2010 at 5:08pm  
I've been dosing with mushroom tea (not seeds).  My attacks have been quelled substantially, but are still lurking (it feels) so I liken it to being at the 'end of a cycle when I was episodic'.  Here's my dose dates;

May 9th
May 25th
June 5th

The following day the hits were always out of character in the sense that they did not hit at my usual times (which screws with one's ability to make plans!), they were far less intense (down from kip 6-10's to kip 2-4's) and their were more of them.  What I also noticed was by day 3 of post-dosing all of this calmed way down too.  I would then have several days pain free!  No shadow!  No attacks!  I would be hopeful each time that I wouldn't have to dose again (that's why I waited so long between dose one & dose two).  MY indicators pointed toward the end of an episodic cycle and I had hoped things would trail off naturally....however they did not trail off naturally and actually began to ratchet up again in terms of kip level so I just said "this is a treatment" not "a cure".  The treatment works better than any other treatment I have used. 

Check your PM for a PS  Cool
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Re: And so the experiment begins
Reply #65 - Jun 8th, 2010 at 9:43pm  
Well said.  There is nocure, only treatment options
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Re: And so the experiment begins
Reply #66 - Jun 8th, 2010 at 11:23pm  
Tim and Cindy I just posted this on Cluster Busters and after reading your posts here this day is my prayer for you!


Wow, didn't think I would be doing an update so soon but I am getting ready to hit the hay after a great Mets win and I just had to post my first PAIN FREE DAY in two months!!! Smiley Smiley Smiley I went to a networking lunch, no attack, I fixed my Mothers vacuum cleaner, no attack, I played golf, nothing, I watched a baseball game ditto. You forget that this is how the other 99% of the world lives. I am pushing off my next and hopefully final dose till this weekend. Anybody following this who has been starting the same or similar regime all I can say is be patient and maybe you will be part of the 75 to 80% that alternative therapy works for. I know I am not out of the woods yet but as I have been throughout my experiment I remain very encouraged and hopeful. I wish all a Pain free night and day.

David Smiley Smiley Smiley
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Re: And so the experiment begins
Reply #67 - Jun 9th, 2010 at 12:52am  
Resounding......"YES"!!!!!

I'm so happy for you David!  Isn't it an amazing feeling?  Pain Free for a whole day.  Really, I am near tears of joy to read your words.

Cindy Smiley Smiley Smiley Smiley
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Re: And so the experiment begins
Reply #68 - Jun 9th, 2010 at 7:10am  
Fantastic news David.  You did the experiment as good as anybody could have.  It's a trail and error game and what suits your body.  Patience is the key and you did that.  I just dosed 40 seeds two nights ago as I am having shadows for what I think is the beginning of a cycle.  As long as i'm off everything else, i'll be dosing again on Saturday.  I'm glad your getting some relief.  Now enjoy life (as you have) on these pain free days and remember to never think of that next hit.

Cheers!

Chad
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Re: And so the experiment begins
Reply #69 - Jun 9th, 2010 at 11:22pm  
I am delighted for you David!! Cristal is going on ice!
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Re: And so the experiment begins
Reply #70 - Jun 9th, 2010 at 11:28pm  
That's both great news and an incredible job of chronicling the whole journey. Thumbs up to you on both counts!

Joe
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Re: And so the experiment begins
Reply #71 - Jun 10th, 2010 at 7:54pm  
David,
great news!!!!!! SO so so so happy!  I too am joing the buster regime tonight.  Watching the evil empire Yankees and just finished my dose.  Wish me luck!
After this is all over, we gotta catch a game!!!
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Re: And so the experiment begins
Reply #72 - Jun 10th, 2010 at 10:02pm  
Birdman,

I am so rooting for you, just remember don't get discouraged it got worse for me before it got better. I just watched the Met rookie Niese pitch a one hitter so nice end of the day. I am going to post my last two days in a little bit, more positive news.

David

PS: Absolutely yes to a game as soon as we feel comfortable not trying to lug a couple of E Tanks into the Ballpark LOL.
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Re: And so the experiment begins
Reply #73 - Jun 10th, 2010 at 10:24pm  
Two days since my last update so here we go. Since my PFD on Tuesday things have been close to that. Two minor attacks yesterday easily aborted with 02 and quite frankly I could have waited them out and let them abort on their own but why should I. Today one minor one at 4:30pm which was kind of weird, I was driving and the pain never got above a 1.5 but it was coming and going every 45 seconds for about 20 minutes. I just went ahead and aborted it when I got home in about two minutes with my trusty 02. I am going for dose 5 tomorrow night and I am hoping that is the knockout dose, I would really like to crack that Cristal. That's it for tonight, as always I remain encouraged, hopeful and eternally grateful to the two sites, and all who have helped me with this experiment.

David

PS: If you know anybody who has been posting lately about having ONSI before trying alt therapy please let them know of the success of this experiment and the others who have gone before me. I am not saying not to have it, I am just saying to really check out alternatives before having such an invasive procedure.
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Re: And so the experiment begins
Reply #74 - Jun 11th, 2010 at 6:09pm  
I feel like me are traveling this highway together and glad to see that we are both having positive results.  Let's hope for the best and keep going.  Go Yankees, Mets, and USA soccer!!!!
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