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The Beast is BACK!!!!


Brad
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Hello fellow clusterheads, I have missed you all and I hope everyone is well.  I have been absent for a while dealing with the chaos in my wonderful life. I have been doing well in school and am actually turning in my final assignment tonight.  I graduate/walk in about 3 months but now officially a personal trainer for a large gym.  I have been PF only since January and last night it hit while driving home.  Luckily I still have a few Immatrex injections which a 1/3rd of one worked.  I'm hoping that it was just it's illusive cousin the Sinus migraine. They are hard to tell apart for me at times.  I am going to wait it out and see if the cyclic pattern returns.  How have y'all been?!

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Congratulations on all you have accomplished, Brad!!  I remember (I think) that the last time you were here you were afraid that you might have to drop out of school.  I'm also remembering (I also think) that you were using only D3 plus O2, and maybe some energy drinks (?) to treat your CH (plus the imitrex).  There's a relatively new thread at ch.com about the D3 regimen -- You might check it to be sure you're taking it in accordance with the latest info: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

Seems like you might want to consider starting out at a higher D3 level to ramp up more quickly (20,000 IU instead of 10,000) (?). 

I hope the strategies you developed last time are going to get you through this time, too.  Or maybe, even better, that it's not CH but those sinus headaches that you're feeling.  If you need advice about any of the things you haven't tried yet, you know we're here for you.

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Thank you, very much both of you.  Luckily, I realized this morning that I have a sinus infection.  The sudden searing pain behind my typical eye threw me off kilter.  But with the arsenal of information that I have received from you guys, I did not panic, as I used to.  Good to hear from you again and I plan to stick around and visit way more often!

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Welllll......I am now starting to think that the beast is in sheeps clothing.  Had to perform two more injections for the last two nights at about the same time.  Yet each morning I blew out some lovely orangey hued mucus from the nostril of the typically painful side.  Either way, I'm scheduling a Dr visit this week to re-up on shots and O2 and I will certainly read the D3 updates, CHFather.   Thanks for the heads up.  Bummer, it hasn't even been a full year yet!  Hoping that I am not slowly becoming a chronic!?!?!?  Oh well, I am truly blessed that I have a wonderful extended family here that I can always depend on!!!!!!!

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  • 2 months later...

Ok, so I finally started the D3 regimen today.  I have been getting hit once or twice in the day and at least twice at night, possibly at the start of rem sleep.  Figured that I would try to tough it out with just the shots, but now my belly is sore from all the injections.  Fed up and frustrated due to severe lack of sleep.  I had great luck the last time with D3 and now wished that I didn't drag my feet on this one.  I WANT A CURE!  Not just pain management, but a REAL cure! Thanks for letting me vent! ::) >:(:D;)

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Brad, I am back in the mix again too.  I feel your pain and hope we are both able to knock this down before it digs in.  How awesome would a cure be???  Don't see it as a reality so I am heading forward with my 02, redbull and busting.

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I WANT A CURE!Not just pain management, but a REAL cure!

  Brad, am I remembering correctly that you have resisted busting?  Completely respecting your decision in that regard, I would say that most people here think that in terms of ending cycles and possibly preventing them with maintenance dosing, busting is the closest thing to a "cure" that currently exists (or that is currently available, anyway).

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Thank you Birdman and CHfather. After 26 years of this, I just get frustrated at times. I took the first dose of the D3 reg yesterday and actually had the first full night sleep in almost 3 weeks.  With the exception of a mild lingering shadow when I woke up  It is still early and it took about a week the last time but I am optimistic as I included honey(Boron) Parmesan romano cheeze (Vit K) and OJ this time around.

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Brad, regarding the D3, and just out of curiosity since you seem to have had such good results with it (NO JINX!), would you describe yourself (as I imagine you) as someone who basically eats a healthy diet?  Because our experience with the D3 was that it enabled my daughter to quickly re-establish a highly alkaline pH level, which seems to be potentially a way in which the D3 is effective.  I'm wondering whether people have better/quicker success are people whose diets are typically "healthy" and whose pH is already more in the alkaline direction.

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Sorry for the delay, I fried my laptop on Halloween, so I am now using the wife's until I get my new one this week.  Amazingly enough, I have still yet to have anything more than a few morning shadows since I started the D3 regimen. They were quite aggressive up until my second dose.  And yes CHfather, I do eat quite healthy being a personal trainer and all.  I have to lead by example for my kids and my clients.  I wasn't always and still am not completely perfect but now I have condensed it to a cheat day or two, once a week.  Soda was my biggest weakness along with smoking, till I quit 3 years ago. 

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Scratch that!  That friggin Beast visited me 3 times in 24 hours and he's Angry!  Nailed him the first two times with my remaining injections but he woke me up at 2 in the morning and the sumatripten tablets took and hour and a half before I was able to go back to sleep  I wonder if it is because I ran out of OJ a few days ago?

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  • 2 weeks later...

Urrrrrrg!  I am getting an average of 4 hits every 24 hours.  I am afraid to even go to sleep since rem seems to trigger a hit.  Waiting for insurance to clear my o2 script and he gave me topamax that I have been hesitant on taking because of how I didn't like the carbamazepine (anti seizure) from before. Is it worth it?

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Sorry Brad!!!  From what I've read, topamax is preferable to carbamazepine/tegretol in terms of side effects . . . but far from side-effect free.  I think in these situations it's a matter of which you like least, CH or topamax side effects (assuming that the topamax actually works, and assuming that you still don't want to consider busting).

While you're waiting for your O2 to come through, seems like you ought to at least consider ordering an O2ptimask (http://www.clusterheadaches.com/khxc/), and maybe a 25-lpm-or-higher regulator.

Hoping things get better fast!

Jerry

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No word from my insurance clearance for O2 so I I may have to pay out of pocket.  Finally started the topamax and already annoyed with how slow I feel but I slept through the night so be it.  I have a BAD cold/flu infection on top of it so I feel like I'm in hell.  I think that I already see little visuals out of the corner of my eyes.  I just have to stay positive and know that I will ALWAYS win!!!

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I honestly think that we may be they toughest people on the planet.  To know that something as painful as these are going to repetitively beat us down and yet we are still here.  I am proud of you ALL for being there for us and helping us when everyone one else just shruggs us off!!!  THANK YOU!!! :) :) :) :) 8-) 8-) 8-)

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I have not given up on the D3 reg yet though I am blown away that it worked so well the first time and at the start of this second cycle.  i understand that there are many other benefits to it aside of th CHs.  I have gone up to 20,000 iu.

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