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Kate in Oz CH.com Hall of Famer Offline Posts: 633 Australia Gender:	Things just got awfully confusing... Aug 31^st, 2010 at 7:20am In the last day or so we've had 3 new members come to the board - Dale, Daniel and Danny. Oh my. Forgive me if I get you guys a little mixed up Welcome
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Things just got awfully confusing... Reply #1 - Aug 31^st, 2010 at 7:40am If they only recently got confusing for you.......you're miles ahead of me....I spend most of my life in that state Joe
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shellcory CH.com Junior Offline I Love CH.com! Posts: 71 Victoria, Australia Gender:	Re: Things just got awfully confusing... Reply #2 - Aug 31^st, 2010 at 9:54am Guiseppi wrote on Aug 31^st, 2010 at 7:40am: If they only recently got confusing for you.......you're miles ahead of me....I spend most of my life in that state Joe Know that feeling all to well!
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bejeeber

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Re: Things just got awfully confusing...
Reply #3 - Aug 31^st, 2010 at 1:38pm

Me three about being plenty confused even before the 3 D's arrived to add fuel to the confusion fire. Cheesy

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Daniel Cook CH.com Junior Offline I Love CH.com! Posts: 29	Re: Things just got awfully confusing... Reply #4 - Sep 2^nd, 2010 at 12:36pm i'm sad i'm still all new to this... dealing with CH is the worst thing ever.... i was in a horrible car accident when i was 17.. honestly id rather redo that then have these headaches. I'm not joking either.
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Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: Things just got awfully confusing... Reply #5 - Sep 2^nd, 2010 at 1:44pm Daniel, there's no reason to be sad. (even if we are all confused by the names of new members) There are ways of dealing with this and making life tolerable while your're in cycle. Just keep asking questions here and keep reading too. Linda
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mikstudie

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Re: Things just got awfully confusing...
Reply #6 - Sep 2^nd, 2010 at 1:44pm

Daniel,I just found this site a few weeeks ago and these people have got me from K7/8s to K 2/3s in a short time just from the info I found here.These people know things that my Doc is clueless about. Energy drinks,MELATONIN,cold water, fresh air, IMITREX,I almost feel normal. Read thru this forum and try some of the things suggested. Good Luck and God Bless!!!

DONT LET THIS DEMON RULE YOUR LIFE!!!

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IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!!

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Things just got awfully confusing... Reply #7 - Sep 2^nd, 2010 at 2:26pm Hey Daniel...getting down in the dumps...hard not to every now and then, just don't stay there! I've survived 32 years of CH and it aint killed me yet! Joe
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bejeeber

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Re: Things just got awfully confusing...
Reply #8 - Sep 2^nd, 2010 at 2:45pm

mikstudie wrote on Sep 2^nd, 2010 at 1:44pm:

...These people know things that my Doc is clueless about.

From my own experience and what I've seen others report, this is true about most doctors, and the value of info found here.

Now that you're here things are looking up! Hang in there - you very well may be able to push the CH well into the background of your life.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Agostino Leyre

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Re: Things just got awfully confusing...
Reply #9 - Sep 2^nd, 2010 at 4:26pm

mikstudie wrote on Sep 2^nd, 2010 at 1:44pm:

DONT LET THIS DEMON RULE YOUR LIFE!!!

Out of all the info found here, this is the most important and helpful in developing a strategy for getting your life back. Do we still have miserable times? Yes. But not letting CH rule your life is the best attitude to have.

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Triptans cause increased number of hits and increased intensity. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.&&

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Kate in Oz

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Re: Things just got awfully confusing...
Reply #10 - Sep 2^nd, 2010 at 7:45pm

Hey Daniel,

I totally understand how devastating CH can be - especially in terms of fear and depression. But I have to tell you... I woke up this morning with that familiar feeling in my temple that tells me anothe cycle is about to start - oh joy. It seems like only a few weeks since the last cycle stopped. BUT I'm truly not too phased about it - yes there is going to be some pain - but I do feel I have it under control! Today I will go and pick up an o2 tank, that is enough to put my mind at ease. Just having it on hand eliminates the fear factor!!

Read, read, read, there is so much good advice on this board - no reason you need to suffer needlessly anymore. I came here in 2005, and I was in a bad way!!!!! But over time I have learnt what helps as well as what to try if that stops working - which can happen.

I do hope you find somethiing soon that helps for you - in the mean time feel free to ask all the questions you have, and vent when you need to !!

Wishin you all the best,

Kate

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Daniel Cook

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Re: Things just got awfully confusing...
Reply #11 - Sep 2^nd, 2010 at 8:28pm

Hey all, kinda wanted to give everyone an update on whats been going on. I'm almost at 5 weeks so far and almost getting ready to think i might be chronic? is that a fair assumption?

I have another appointment with a Neurologist tomorrow at my hospital, she is good and does know about CH, just not sure to what extent? I also have an appointment October 7th to see the cluster headache specialist which was noted on ouch website. So i guess thats a positive sign?

I'm taking divalproex and im going to be straight up with the doc and tell her to put me on something better because it does make the pain less intense i'm still getting hit 4-6 times a day and i work a really intense job ( brain function wise ) which requires complete concentration and being able to handle multiple tasks at once seems to be triggering the attacks? does that make sense?

Every single morning since i start getting these headaches i get the same pain in both my temples and it drives me absolutely NUTS. I actually get woken up several times throughout the night with the same pain.. how come everything was perfectly fine before this? why all of sudden did this happen? rawr!! i just wanna scream!

I do have O2 S cylinder about 5 hours of oxygen, i have imitrex shots but they hurt so damn bad and i hate poking my self with a needle as i almost pass out everytime... i have nasal sprays they work wonders but i have used over 700 dollars worth of them in 2 weeks which is only partially covered by medical because they are bloody expensive! I tried melatonin... i'm going to try Kudzu my gf is chinese said its worth a shot?

I will report back after my appointment tmw at 1pm PST! i hope she can help me...... i just got promoted and this new job at the bank is stressful and dealing with this is even worse... i left early again today! i think maybe they are reconsidering their choice to hire me lol!

thanks for listening!

Daniel

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Kate in Oz

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Re: Things just got awfully confusing...
Reply #12 - Sep 2^nd, 2010 at 8:41pm

Daniel Cook wrote on Sep 2^nd, 2010 at 8:28pm:

I'm almost at 5 weeks so far and almost getting ready to think i might be chronic? is that a fair assumption?

Hey Daniel,

My cycles generally last about 8-10 weeks. I wouldn't worry too much about going chronic just yet. I know at the time it seems like forever - but it will pass!!

Good luck with the neurologist tomorrow - sorry I'm not up on what other meds you've tried - verapamil?? that can take a while to kick in but does usually limit the number of hits and the intensity for me - although I find I cop alot of shadows with it... still might be worth asking about - everyone is different.

With regard to work - that can be tough because people generally don't understand the magnitude of the pain. Wonder if you have seen the letter to employer on this site? I've used that a few times with different lecturers at uni and they have been very understanding.

I have found that most of the drugs given for this do tend to affect brain function or fatigue to some extent - and that is why I swear by 02. Is it not working for you??? What flow rate are you using?

Kate

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« Last Edit: Sep 2^nd, 2010 at 8:42pm by Kate in Oz »

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Daniel Cook

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Re: Things just got awfully confusing...
Reply #13 - Sep 2^nd, 2010 at 8:51pm

Kate in Oz wrote on Sep 2^nd, 2010 at 8:41pm:

Daniel Cook wrote on Sep 2^nd, 2010 at 8:28pm:

I'm almost at 5 weeks so far and almost getting ready to think i might be chronic? is that a fair assumption?

Hey Daniel,

My cycles generally last about 8-10 weeks. I wouldn't worry too much about going chronic just yet. I know at the time it seems like forever - but it will pass!!

Good luck with the neurologist tomorrow - sorry I'm not up on what other meds you've tried - verapamil?? that can take a while to kick in but does usually limit the number of hits and the intensity for me - although I find I cop alot of shadows with it... still might be worth asking about - everyone is different.

With regard to work - that can be tough because people generally don't understand the magnitude of the pain. Wonder if you have seen the letter to employer on this site? I've used that a few times with different lecturers at uni and they have been very understanding.

I have found that most of the drugs given for this do tend to affect brain function or fatigue to some extent - and that is why I swear by 02. Is it not working for you??? What flow rate are you using?

Kate

I find O2 works great while im at home and its at my hand, however my worst attacks are generally in the evening? like just now! almost every night before bed, and as soon as i wake up and during the night unless i do a nasal shot which can get me 4-5 hours of sleep at the most! so i technically like to stay up till midnight do a nasal shot then get some sleep till around 5am and go to work!

im running 15lpm sometimes 20! it does work great.. can i ask you a question... do you ever feel like the pains builds up pressure in your sinus? and then it releases once in inawhile and you get really stuffed up? is this normal as well? i almost think im suffering a sinus infection + cluster.

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Kate in Oz CH.com Hall of Famer Offline Posts: 633 Australia Gender:	Re: Things just got awfully confusing... Reply #14 - Sep 2^nd, 2010 at 8:56pm I don't recall getting sinus build up - I don't recall much to be honest - but I'm sure there are others here who do get that. But I do tend to stay up real late during cycle in the hope that I might miss a hit - get's pretty exhausting after a while
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wimsey1

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Re: Things just got awfully confusing...
Reply #15 - Sep 3^rd, 2010 at 8:29am

Quote:

do you ever feel like the pains builds up pressure in your sinus? and then it releases once in inawhile and you get really stuffed up? is this normal as well? i almost think im suffering a sinus infection + cluster.

You might be...we're getting into the high allergy season. Then again, the trigeminal nerve can bang pain into the eye, jaw, nose, and teeth. And after a series of high KIP hits I find a residual pain in those areas. And yes, some have found kudzu to be helpful. Good luck and Blessings! lance

Kate, sorry to hear you are going back into cycle. Prayers coming your way. lance

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mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: Things just got awfully confusing... Reply #16 - Sep 3^rd, 2010 at 8:44am I find when I try to miss a hit i make it worse but everybody is diffirent.I try to maintain my daily routine,(except to have my after work beer dammit)
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bejeeber

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Re: Things just got awfully confusing...
Reply #17 - Sep 5^th, 2010 at 2:57am

Daniel Cook wrote on Sep 2^nd, 2010 at 8:28pm:

...I'm almost at 5 weeks so far and almost getting ready to think i might be chronic? is that a fair assumption?

l

No, fortunately that's not a fair assumption at all. CH episodes very often run longer than 5 weeks, so odds still are that you are episodic.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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