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Charm

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Newbie....
Aug 18^th, 2010 at 1:41pm

Hi I'm Charm...I stay in Dallas, TX.

My first attack was about 6 months ago and when I felt the pain in my head I just dropped to my knees and thought that something was going to bust inside of my head. I layed on the floor for about 45 minutes, crying and rocking and screaming because the pain was unbearable. Ever since that first attack they started to come more and more and I kept on saying to myself "Why me?" I finally went into the neurologists and he explained to me what was happening. ]

This pain is unbearable and I wouldn't put this on my worst enemy. I get this bad headache and it feels like I'm just going to die from one of these headaches. My nose starts running and my eyes start watering. It feels like nobody understood what I was going through. My husband would just tell me to lay down and cut off the lights and maybe you'll feel better.That doesn't work. I can't lay down and i can't stay still. I have to move and rant and scream and ask the LORD why is this happening to me. It's scary cause I have kids and I'm home with them alot and when I get these headaches I can't tend to their needs cause I'm in so much pain.

I'm so happy I found this website. I'm currently taking Prednisone and Hydrocodone for pain. I'm also starting oxygen soon. It should be delivered here by tomorrow, hopefully.

I just wanna say HI to everyone and I'm so glad I'm not alone. The thing is with this condition is that there is no way of knowing when you're going to get one. I have this feeling that it's going to happen but when it does there is no way to stop it. Yesterday me and the family went out on the town, as I like to call it. LOL. I was so happy yesterday, I worked out, took a shower and then all that happiness went to sadness because just like that I had a attack. I get 2 attacks every other day in the morning and at night. OXYGEN PLEASE HURRY!!! LOL!

Well that's my story....TTYL!

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Guiseppi

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Re: Newbie....
Reply #1 - Aug 18^th, 2010 at 1:54pm

Ouch, an all too familiar story! Glad you found us, welcome to the board, flush that Vicodain!!! (Hydrocodone) It probably isn't touching the pain anyways, and has a lot of potential to hurt you and cause rebounds.

The oxygen is a great abortive, be sure and read the oxygen info link on the left as you must use it correctly or it won't work. The primary keys, a Non Re Breather Mask, A high flow regulator of at LEAST 15 LPM, and jump on it as soon as you feel an attack coming. Re Breather Masks, Nasal Canulas, Low flow rates, all are recipes for failure. The key is getting 100% oxygen to your lungs, no exhaled air, no outside air. I can abort in 6-8 minutes, from oh crap here it comes to pain free, it's a beautiful thing!

You should also talk to your doc about a preventative routine, a med you take daily to decrease the number and intensity of your attacks. I use lithium, at 1200 mg a day it blocks 60-70% of my hits. Used to block closer to 90% at only 900 mg a day but over the years it's lost a little of its effectiveness. Verapamil and topomax are 2 other popular first round tries for prevents.

Let us know how the oxygen works and please ask any questions that pop up! Welcome home.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Batch

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Re: Newbie....
Reply #2 - Aug 18^th, 2010 at 2:33pm

Hey Charm,

Welcome aboard and sorry you had to join us... Did you get an Rx for oxygen therapy for your cluster headaches? The minimum flow rate on the Rx should be 15 liters/minute and better yet, 25 liters/minute as that flow rate will support hyperventilation. The following link gives you all you'll need if you do not already have a prescription for oxygen therapy:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

In the mean time swing by Costco or your local supermarket and pick up a big bottle of calcium citrate tablets that also contain vitamin D, magnesium and zinc. Kirkland, Naturemade or Citracal Plus Bone Density Builder brands all have the same basic formula...

I take 3 to 4 of them a day usually an hour prior to the evening meal washed down with an 8 oz glass of fresh homemade lemonade.

The regimen of calcium citrate and citric acid from the lemonade acts as a buffer on the stomach contents to elevate the pH from 2.5 up to 4.0. This has a net effect of elevating arterial pH and stimulating vasoconstriction that will help lower the frequency and intensity of your cluster headaches

I've been using Baja Bob's sugar free margarita mix I ordered over the Internet for the last 10 days as it has extra citric acid and it's working great. I've had only two hits that required oxygen. Both were mild and took less than a minute of oxygen to abort.

Take care and TTFN

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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bejeeber

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Re: Newbie....
Reply #3 - Aug 18^th, 2010 at 2:37pm

Hi Charm.

What Joe said.

"Ol Giusseppi/Joe is renowned for dishing out the really good advice, so you might want to even print his reply out and put it on your refrigerator LOL.

This condition can be pretty darn treatable for many of us, although it often requires plenty of reading here, because you usually don't get max relief from just doing what the doc says. So it's a good thing you joined us!

If you become interested in the clusterbuster approach to preventing CH episodes, here's a video talk on the subject by one of our fellow CH'ers: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

[Edit]: You can take Batch's advice to the bank too - he's the O2 guru. He snuck his post in before I got mine off. Cool

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« Last Edit: Aug 18^th, 2010 at 3:11pm by bejeeber »

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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Charm

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Re: Newbie....
Reply #4 - Aug 18^th, 2010 at 5:06pm

Wow...thanks for the replies guys! I feel so at home on this website. The doctor ordered the oxygen and it's going to be delivered to my home soon. So in the next day or so they will come over and give me the instructions. I will make sure I listen to you guys advice on the oxygen and I'll let you guys know what the doctor ordered for the oxygen.

TTYL!

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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Newbie.... Reply #5 - Aug 18^th, 2010 at 5:57pm Welcome to the club no one want's to be in Charm! Sounds like you got great advice from Joe and Pete aka(Batch) and you are off to a bangin good start with the O2! Good Luck and keep us posted! PF Wishes!
Back to top	Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or An eye for eye only ends up making the whole world blind. M.K. Gandhi If you are going through hell...Just keep going IP Logged

Linda_Howell

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Re: Newbie....
Reply #6 - Aug 18^th, 2010 at 6:47pm

Hello Charm and welcome to the house that pain built.

We are a family here and you are one of our newest members, so I welcome you. You say you have 02 coming and that is a great thing. So many, many, many...did I mention MANY, of us get relief from that simple thing? Breathing pure 02 with a regulator that goes to at LEAST 15 lpm is a Godsend to us. I use one that goes to 25 and the difference is amazing.

Don't do the "why me" thing. We've all done it at first, but it is counterproductive. Someone could come back and say..."why not you" The thing to focus on is that this condition of ours will not kill us, it does NOT define us, it will not injure us in any way physically except for the pain, even though we think it must do some collateral damage...it doesn't. It will end. I promise.

You said you were given hydrocodiene. (oh heavy sigh) The best minds that we have at our disposal here. Neurologists like Dr. Peter Goadsby have said that narcotics have no place in the treatment of this condition. I would ask you to go to the medications board, scroll down to a thread titled "narcotics should be a last resort only" Every few months we go through this, but this time we have a poster talking about her own private opinion and others have chimed in with theirs in a non-heated, intelligent conversation about it.

Then I would like you to read "Dancing with the devil" by the mad Viking (Svenn) Hope I do this link right...Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

If it doesn't work just go to the general board and it's up at the top.

Quote:

I just wanna say HI to everyone and I'm so glad I'm not alone.

Nope..you are not alone. Smiley

edit...o.k. my link didn't work. SOMEONE here is gonna have to teach me this. I have no problem with posting any other links?????

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« Last Edit: Aug 18^th, 2010 at 6:51pm by Linda_Howell »

Hurt people.....hurt people. Think about it.

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Mosaicwench CH.com Sponsor Offline www.mosaicwench.com Posts: 3507 Near Milwaukee WI, USA Gender:	Re: Newbie.... Reply #7 - Aug 18^th, 2010 at 7:10pm Here you go Linda, dear! Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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bejeeber

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Re: Newbie....
Reply #8 - Aug 18^th, 2010 at 9:29pm

Charm, it was great of your doc to prescribe you O2, but I betcha it will be for something like 8-10 LPM.

That is a joke for many of us here although in my earlier years of CH it would actually work for me. These days I need a minimum of 25 LPM.

You might wanna check into ordering a non rebreather mask and higher LPM regulator right now because your O2 supply place likely won't have 'em even in the unlikely event your doc prescribed them.

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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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Charm CH.com Newbie Offline I Love CH.com! Posts: 7	Re: Newbie.... Reply #9 - Aug 18^th, 2010 at 9:34pm Thanks for all the advice....you guys are wonderful!
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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: Newbie.... Reply #10 - Aug 18^th, 2010 at 10:04pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Thanks my dear friend. One of these days I'll call ya and you can teach me that. Right after you teach Joe how to copy and paste. lol Sorry guys. Didn't mean to derail or hi-jack...carry on. Over.
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