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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › new in town

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new in town (Read 2724 times)

jimmy ny

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new in town
Dec 12^th, 2008 at 4:49pm

my name is jimmy and ive been suffering clusters for 11 years now. It is very comforting to know that all of you are here. I used to think I was overreacting to a headache. My doctor dignosed clusters after the first year. Millions of imitrex shots and numerous head beatings later, here I am. I have a wonderful wife who supports me as well as a 3 year old boy, who just wants to know whats wrong with daddy. I look forward to talking to as many of you as possible in the search for pain free days. am currentky in a pretty bad cluster and have used my 2 imitrex shots for the day. Now the fear of the next attack is imminent. I'm not sure what I'll do , but usually I end up in the E.R. I read the water treatment and have started it today. I have been living my life on percocet and imitrex for far too long. But, as many of you know, I just want the pain to go away no matter what the cost. Is there any thing we can do to make the pain less intense during our nighttime attacks so we can go back to sleep? Ive done the dance and all but it always seems to be some sort of meds that finally put me back asleep, only to wake up with the beast staring me right in the eyes again. I'm just looking for people to talk to and understand whats going on. I look forward to my wife looking at this site as there many people out here that she too can relate to. Do people post while they are battling? I think maybe it will help to talk to people going through what I am at the same time. Thanks again for being here and talk to you all soon.

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Just Plain Carl

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IT IS WHAT IT IS

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Royal Oak, Michigan
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Re: new in town
Reply #1 - Dec 12^th, 2008 at 5:02pm

Welcome Jimmy,
   Glad you were able to find us.
   I'm sure you are about to recieve a ton of info.

   I'll start with suggesting oxygen (lots more to follow on this). Read up the info in the medication section.
Alot of us get relief from it.

   You might try Melatonin (over the counter) to help you get some sleep. It was hit and miss for me but some others have had success.

   Anyway, stand by for more and good luck to Ya

PFD's
JPC

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Mosaicwench

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www.mosaicwench.com

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Near Milwaukee WI, USA
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Re: new in town
Reply #2 - Dec 12^th, 2008 at 5:02pm

While I don't have an O2 Pusher button, I believe wholeheartedly in Oxygen's merits.

You really should speak to your doctor about getting you tanks and a non-rebreather mask set up. Someone more knowledgeable than me will be along in a minute to give you more information about liters per minute and techniques that work, I'm sure.

My DH (a clusterhead for 17+ years) can abort a hit in 10 minutes or less with Oxygen. I watched it work time and time again. And I thank the creator for simple O2 every day!!

If your wife is amenable, send her here - we're great at supporting supporters. We supporters have our own private hell and it's nice to know we're not alone too.

And let me tell you about my son. He's 17 now, and he's never known his father without CH. My son has grown into an excellent supporter and advocate for his dad and has a boatload of empathy for those in pain of any kind. He's watched his dad battle this beast all his life and knows all about perserverence and "living between hits."

While I know 3 years old is too young to be exposed to a full blow cluster attack, don't shut him out of your battle as he grows up. Adversity builds character, and in the case of CH, empathy and advocacy skills as well.

Welcome home!

“Be regular and orderly in your life, so that you may be violent and original in your work.”
~Flaubert

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jimmy ny CH.com Newbie Offline I Love CH.com! Posts: 8	Re: new in town Reply #3 - Dec 12^th, 2008 at 5:07pm thank you it is already a pleasure to know you.
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kevmd

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Who needs a hypothalamus
anyway?

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Re: new in town
Reply #4 - Dec 12^th, 2008 at 5:11pm

i'll 2nd the o2 and then tell you to get off the pain killers. They are probably giving you rebounds. You may find you get less attacks when you stop taking it. Plus they are addictive. You don;t need to go through that on top of CH. I have a 3 year old boy as well. Earlier this year he kept asking why my head always hurt. He got use to it after a while and referred to my oxygen tank as daddy's medicine.

You are not alone in this mess. We are here to help and be your friend. Welcome to your new family and get off the dam pain killers

PHILADELPHIA PHILLIES 2008 WORLD CHAMPS

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MITYRARE

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autocross racer

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Ontario, Canada
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Re: new in town
Reply #5 - Dec 12^th, 2008 at 5:13pm

Welcome to the site.
I too am in cycle right now....and a very intense cycle at that!
Lots of excellent knowledgeable people on here with many different coping strategies.

As a 30 year clusterhead, today begins a new chapter for me as today i embark into uncharted territory (along with my Dr.) experimenting with hormone replacement therapy/manipulation to see what effect if any it brings to my clusters and my cycle duration and intensity....stay tuned as i will report periodically.

Listen to the folks about the Oxygen...works at aborting the headaches for most.

Paul

Paul
"car crazy"

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: new in town Reply #6 - Dec 12^th, 2008 at 6:44pm Welcome, you have probly read all these post and thought were 02 freaks or something. But the truth is 02 at a rate of 12-15 lpm in a non rebreather mask will stop my cluster in less than 5 minutes!!! Coach Bill
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RichardN

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Re: new in town
Reply #7 - Dec 12^th, 2008 at 8:01pm

Hi Jimmy & Welcome Home

Another vote for 02 here. I can't use Imitrex (some artery blockage & high cholesterol), so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack . . . works for 70% of us to abort . . . AND it's cheap (if insurance won't cover). Copy the 02 info and take to your doc. Most here use the 02 first and save the Imitrex for the hits the 02 doesn't reach.

Nite hits: Melatonin (OTC) helps many reduce the frequency/intensity of night hits . . . will make you a bit groggy . . . I'd start with 6, then 9, then 12mg to get used to the grogginess and assess the success of same.

Strong coffee, Red Bull or other energy drink with caffeine & taurine seems beneficial to many.

Ice pack on the affected side . . . I have to move it around . . . eye, side of head, neck, sinuses, and in combination with the 02 seem to abort much quicker.

There are a host of preventatives out there; Verapamil, Depakote,Topomax, Lithium. Many use in combination with other prevents. You've got a lot of reading to do, but one of my favorite sayings on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . . and here, you have a very good chance of finding the "something" that works for you.

Water treatment: When I first came here (2/02), having multiple daily/nightly attacks, it was Verapamil (as prevent) and 02 (as abortive) that did the trick for me. In 4/04, I had surgery which required/requires that I consume large quantities of water . . . my attacks were reduced in frequency/intensity (I had stopped the Verapamil due to low BP) . . . . so yes, I'm a believer . . . but it is NOT easy to do. . . and of course I have my 02 available at all times to kill whatever hits I do get.

Read, read, read . . . ask any questions you might have. The info/caring/sharing you will get here comes from folks who truly know your pain.

Be Safe, PFDANs

Richard

I can live with the beast as long as I don't have to "dance" with the bastard.

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barry_sword CH.com Alumnus Offline Mountain Biking Keeps Me Sane Posts: 3947 Bracebridge, Canada Gender:	Re: new in town Reply #8 - Dec 12^th, 2008 at 9:42pm Hi jimmy and welcome to your new home. I have 100% success rate with the o2 to abort a hit. Every time! Must get on it at the very first sign of an on-coming hit. I am on 480mg verapamil daily as a preventative, which is working well so far this round, and get on the o2 when one gets through. Barry
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ClusterChuck

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The BEAST rises again,
and again, and again,
and .

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Greenville, North Carolina
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Re: new in town
Reply #9 - Dec 13^th, 2008 at 12:14am

Ummm ... in case you haven't heard, try OXYGEN!!! LOL!

It is the only reason that I have any sanity left, at all! (YES, Barbara, I DO have an ounce

{well, ALMOST and ounce}

of sanity left) Oxygen is the FIRST line of defense for most of us. I only resort to Imitrex when I get a particularly nasty hit, that oxygen does not abort. MOST of my hits are aborted by oxygen.

ALSO, read the hint over on the left margin called imitrex tip. It allows you to get to take up to six shots a day, verses the two you get now. I use it for all of my shots. I also do it because, in reality, due to heart and circulatory conditions, I am not suppose to take it at all. The lower dosage does not seem to affect me, or my heart.

If you are confused about the tip, or oxygen or anything else, I PM'd you my phone number. Don't be afraid to use it.

Chuck

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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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: new in town Reply #10 - Dec 13^th, 2008 at 12:06pm Welcome to the board, Bob has given you some awesome reading. His posts are always the most up to date medically speaking. Another vote here for oxygen, oxygen oxygen!!!!! My primary and most effective aboortive after 30 years of doing battle with the beast! Hoping you can find some pain free time soon. Joe
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jimmy ny CH.com Newbie Offline I Love CH.com! Posts: 8	Re: new in town Reply #11 - Dec 13^th, 2008 at 5:08pm Thank you all for welcoming me to the family. I heard somewhere that o2 might just work(lol). Im gonna get that ASAP. Will do as much reading as I can. Im so relieved to have found this site!! So, thanks again to all.
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tuck

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Damn this cross is heavy
!

Posts: 232
Gillespie , Illinois
Gender: male

Re: new in town
Reply #12 - Dec 13^th, 2008 at 5:28pm

Jimmy, isnt it a wonerfully awesome feeling when you find this sie and realize there are others out there JUST LIKE YOU??!!!??! I still remember the feling, its almost like a "high". I cant add much that the others havent already said. This place is a wealth of info. I have been "dancing with the beast" for going on 24 years, and NOTHING has helped me as much as this site has!!!!!!!! Like the others, I use melatonin at night,(works like majic) and O2,(works like even BETTER majic!!!!). I still take verap. daily, but havent touched the old imitrex "sticker" for a couple of years, yea,,, the O2 works THAT well!!!!!!. Good luck to you pal, God bless and Merry Christmas. Tuck

cancer shmancer,, i get cluster headaches!

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seasonalboomer CH.com Hall of Famer Offline CH messes with my isness Posts: 2517 Charlotte, NC Gender:	Re: new in town Reply #13 - Dec 14^th, 2008 at 6:26am Jimmy, Welcome. You've got all the great advice in the previous posts. My life was changed by these people and their great advice. I consider what I have been able to do in reclaiming that portion of my life that I used to relinquish to CH a miracle. Hope you will end up feeling the same one day. Best regards, Scott
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BarbaraD

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Hugs to ya

Posts: 8333
Douglasville, TX
Gender: female

Re: new in town
Reply #14 - Dec 14^th, 2008 at 8:14am

Welcome to Clusterville and your new family. Most people here are ok (Except for Chuckles and he'll tell you he's "sane" but, he's a little weird!)

O2, O2, O2 -- and I'm a PUSHER!!! For years and years and years (I'm OLD) I've used Cafergot (ergotomine) as an abort, but since getting on O2 at a really high flow rate with the RIGHT mask, I haven't used it since August. I rely on O2 to abort.

I second that the percocet will cause rebounds, so ya need to get off them. Switch to melatonin at night for the sleep ya need. I take 12-15mg before bedtime. It helps ya get thru the REM sleep where the headaches hit. One hint - if you wake up with a shadow - get up immediately (do NOT lay there expecting it to go away). Get some coffee down - get on the O2, but get your rear out of bed immediately.

Frozen peas work great for ice packs if you don't have one handy. Most of us keep them at the ready. Or if you perfer heat (it's a matter of choice - what works for YOU).

We're all different and different things work on us. 70% of us agree on O2 but after that what works on one probably doesn't work on the next one. One thing we have found over the years -- if you 'tried' something 10 years ago and it didn't work - it MIGHT work today if you try it again. This has been known to happen.

Oh and Red Bull at the first sign of a headache (chug it) sometimes will stop it in its tracks. (not always, but sometimes).

Read READ Read..... There's 100s of years of knowledge on this site - from people who are going thru just what you are. Welcome to the funny farm....

Hugs BD

What don't kill ya, Makes ya stronger!

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jimmy ny

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Re: new in town
Reply #15 - Dec 14^th, 2008 at 9:41am

Again I cant thank all of you enough. For some reason my cycle has come to what I think is the end, at least for the time being. I dont know what to contribute it to. I started a prednizone dose pack 3 days ago as well as water, water, water!! Whatever it was I dont care the beast is taking a well overdue rest. I still feel shadows now and then but I try to drink coffee or more water. I also sometimes make believe that there not there. As you all know that works for about 3 nseconds and reality hits. Im so glad to check i9nto this site every day and see whats new. I hope noone gets upset if I dont answer everyone but the amount of responses to my post has been overwelming. I will write back to all of you in time, I will try not to forget anyone. Thanks and good luck to all , aaaaaaaaaaaaaaaaaaaaaand here is to as many PFDs as we can get!!!

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mezza

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I love YaBB 1G - SP1!

Posts: 415
north carolina
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Re: new in town
Reply #16 - Dec 14^th, 2008 at 10:19am

Hey Jimmy

Welcome- Glad to hear you are getting some pain free time. Preds have killed a couple of cycles for me on the spot. It always buys me at least a day or two of pain free time.

Sometimes though it helps to have a back up plan. For some, after the pred taper is complete, the beast comes back. Prednisone is a transitional med- buys many pain free time until a preventative med like lithium or verapamil or topomax kicks in.

I don't want this information to discourage you though - just wanted you to be prepared as the beast can be very tricky sometimes. Wink

I hope though that your cycle has drawn to close. PF wishes to you! Hope you stick around.

Kelly

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barry_sword

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Mountain Biking Keeps
Me Sane

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Bracebridge, Canada
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Re: new in town
Reply #17 - Dec 14^th, 2008 at 11:42am

jimmy, I really hope your cycle has come to an end and you can go and enjoy each precious moment of your PF time. It might be the Pred. that is giving you some relief right now.

Either way, try and stick around whether you are in or out of cycle, other's could use your support. Too many folks leave as soon as their cycle ends and we do not hear from them until they get the CH's back. Strength in numbers!!!! Wink

PF wishes

Barry

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Nyteguardyan CH.com Junior Offline Someone pluck out my right eye please. Posts: 41 Port Republic, Maryland Gender:	Re: new in town Reply #18 - Dec 14^th, 2008 at 12:00pm tuck wrote on Dec 13^th, 2008 at 5:28pm: Jimmy, isnt it a wonerfully awesome feeling when you find this sie and realize there are others out there JUST LIKE YOU??!!!??! I still remember the feling, its almost like a "high"... AMEN!
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