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Brad

Hello

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I know carbamazapine is typically for facial pain but it is a little complicated with several extra visits for blood tests and I think it was actually triggering a few attacks in the beginning.  If anyone has any info before I see my doc that would be awesome.  Thx.

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LOl.  Yeah, FunGuy,  right after I posted that I Googled the subject and it took me to the same page that you did.  There was some good info on there, definitely.  I'm sorry, I'm a little sleep deprived due to the now expected 2 a.m. CH visits shooting me out of a dead sleep.  Imitrex pills take to long.  Could I dissolve them in water to speed up absorption, just till I can see my doc?

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I seem to recall a post long ago that explained why dissolving Imitrex was not a good idea, but I can't find it now.

Anyone??

Yep, most everyone here understands the sleep deprivation.   :-(

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One of the many doctors I went to prior to being diagnosed with CH decided that I had Tri Geminal Neuralgia or Tic De La Rue (sp?) as he called it......he prescribed the tegretol and though it's been quite a few years, I think I had progressed up to 900mg a day when I said enuf!!  It didn't affect the CH one way or another but it made me feel like pure hammered shit!!!  As Doug stated though, I have read accounts of it being helpful for some folks...good luck!!

DD

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Thanks.  Im calling my Dr today to sched an appt.  Just wann get my facts straight plus I print the necessary O2 info.  Im in th U.S., would he be able to prescribe ketamine because I heard it works like busting, as well.  I look back at my younger partying days and can say that I was in an unusually, long stretch (about 3 years)  with no pain.  I am a dad now and quit all of that a long time ago.  But now, I am starting to understand why.  Because of what I was taking was unknowingly keeping pain free and I was just having a little fun.

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Brad, there are threads about ketamine at ch.com that you might want to look at.  Here's one example: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1285659007

(It's also an example of why it is sooooo much nicer, for me at least, to be here rather than there.)

You can enter the word ketamine in the search bar there to see more. (Interestingly, their search function is so much better than ours that it will take you to a thread here about ketamine at Clusterbusters that you won't come to by using the search bar right here.)

You've given us some hints about why you're resistant to busting (even though it seems to have "worked" when you weren't even deliberately using it to treat your CH), and we've given you some reasons to reconsider your reluctance.  'Nuf said on that topic.

The "official" medical journal materials on O2 talk about 7-12 lpm flows (or 15, tops).  I know it's tough to push doctors, but someone here was able to get a demand valve system paid for by insurance (as I recall), so I think you should try to share info about higher flows/better systems to try to get the most effective O2 prescription you can.

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Thank you CHFather.  You are very wise and understanding am I fully respect yours and everyone here's advice.  I guess I am on the ultimate question of "Why me (us)?"  Such a small percentage on this big ass rock that we live on.  I'm glad to hear that it is not highly hereditary (minus a few small cases) so my daughters may not get it but I'll be damned if I go on much longer, w/my sanity intact.  I lost my voice again because on the late nights attacks accompanied with the loud hollering and yelling that I do to keep me from bashing my head against the brick wall (in the basement away from sleeping family.  I know I am ranting but it feels good to get it out.  Thx! 

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well, i know i said 'nuf said about busting, but you reminded me of something a truly wise guy once wrote:

     To be, or not to be, that is the question:

     Whether 'tis nobler in the mind to suffer

     The slings and arrows of outrageous fortune,

     Or to take arms against a sea of troubles,

     And by opposing end them?

i'd say that most people here have chosen to take arms against their sea of troubles, and in most cases they have, if not ended them, at least put a great big dent in them.

www.iamshaman.com

completely legal to buy and own.

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I know my doc is going to try to push the carbamazepine again because he was convinced that it worked last cycle even though I told him I was already towards the end anyway.  I mentioned o2 before and here steered me away.  I dont have a PhD, but I sometimes question his experience or true agenda.  I'm thinking of changing.  If he tries to deny o2 again then I will request a new doc. 

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I swear they feel like they are getting worse each cycle.  Sometimes I feel like some of these imitrex pills are just placebo because One CH can sometimes bust right through as if I didn't take anything.  Even if it did, my CH is kicked in and at full force in less than 3 to 5 minutes from that first initial little "ting" behind the eye.  I almost broke my hand from punching the wall during my last bout.  I almost want to take chemistry myself so I can produce BOL and give it out for free.  It would be the right thing to do.

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brad, i looked back over this thread to see whether you're tossing down an energy drink (redbull, monster, etc.) at the first sign of an attack.  don't see anything about it, so i'll mention it here just to be sure you know it's a strategy that helps for some people.

also, when you're talking to your doc, it seems that injectable imitrex, not the pill form, should be high on your agenda, along with the oxygen conversation.

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Its funny you mentioned it.  I actually tried that the other day and it worked but I have been reducing my coffee intake for the last several months and I'm not acclimated to that high dose so I made my chest a little uncomfortable but I'll take that over an attack any day.  They are a little expensive and funds are short right now but on payday I plan to pick up a case.  Good Call!!! :) 

I will request the shots fro doc and DEFINTELY O2.  Have to wait till thursday till appt, though. :(

Im a strong guy who is not afraid of anybody but when my kids see me like this I might as well be pansy.  My 4 year old kissed me on the head today during my attack.  I have awesome kids!

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Well, my doc ordered the tank and the imitrex injections and I wasn't taking "No" for an answer.  So now I'm just waiting to see if my Ins will cover them.  Fingers crossed.  On my way to health store to get D3 regimen.  Things are looking up.

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in reply to a post that i saw earlier but can't find.  i think having a cold suppresses the attacks.  i seem to have been experiencing that for about 2 days now.  hmmmmmmm.....

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Good on you for hangin' tough with the doc, Brad.  Many people have experienced frustrating slippages between getting an O2 prescription and actually getting the thing set up right.  I have some suggestions about that in that O2 file of mine, so you might want to give it a quick read-through.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

First thing I recommend is calling the O2 supplier to make sure they're on the right page about what you need. Often a prescription will be quite simple, something like "O2, 12-15 lpm" -- if you have any wiggle room, try to get the highest flow and the best equipment (e.g., a demand valve system) you can.   Be sure you're getting big tanks ("M tanks") and, ideally, also a smaller, portable one for the car (an "E tank"). These usually require different types of regulators (and it's nice to have a mask for each).  You've mentioned that you're not rolling in money, so I guess you have to consider whether the costs would be higher . . . just suggesting that sometimes O2 suppliers know what they're doing regarding CH patients, and often they have no clue.

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Yeah, That's right (doin the cabbage patch), I gots my tank and I goes to 15 lpm and the Imitrex injections.  Haven't had a headache in two days but I'm ready now.  "BRING IT ON", I say.

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So crazy,  30 minutes after my last post the beast came callin.  Did my first ever injection in my belly skin and about 5 mins on the new O2 tank and put a woopin on that Clusterpunk!!!  Pickin up a case of RedBull tomorrow and still continuing D3 regimin.  Thank you all for your advice and support!

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Hey Brad,

Here's something I and some others have found about O2 and imitrex:

I know I can safely hop on the O2 tank first without going for an imitrex injection, because if for whatever reason the O2 won't perform the abort alone, it keeps the attack at bay enough that when I throw in the towel I can jump to the imitrex and still abort with an injection as a last resort.

That said, nothing under 45 (!) LPM O2 will abort an attack for me when in high cycle.

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just a small addition to jeebs' advice:  do the redbull immediately, then get on the O2.  the combo is pretty potent, at least for "beginners."  if it works, then stay on the O2 a few minutes (5 minutes is recommended) after the HA has cleared -- helps prevent recurrences.

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Ahhh, duly noted.  I do like how refreshed I felt after the o2, also.  So many benefits.  As much as I HATE this curse, I am starting the think that it has also helped to to have a passion for something (finding a cure) and also the great people that I have met along the way. Thanks guys!  :)

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I know that I am already married but I think I'm gonna ask my O2 tank to marry me.   :D

I LOVE it! 

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