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TarHeel-blues

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wow,guess i shoulda known
Oct 20^th, 2008 at 8:40pm

hello im jason,,well i do the forum thing with my Z28,and my motorcycle,,and my softball,,etc ,,etc,,,,guess i shoulda known one existed for this terible crap too...ive been chronic since i turned 20,,im now almost 30 and the beast is still going strong.weakest ever i would say kip 8 and a whole bunch of 10's..i quit all my meds cold turkey about 3 yrs ago and went about 7 months virtually headache free,,omg it was so great,,,but just as it disappeared it reappeared mostly 2-4 times daily/nightly..sometimes worse Cry

maybe i will learn something that will help on here or at least gain some comfort from those that actually know what im going through,,,man its depressing Cry

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« Last Edit: Oct 20^th, 2008 at 9:16pm by TarHeel-blues »

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DennisM1045

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Re: wow,guess i shoulda known
Reply #1 - Oct 20^th, 2008 at 9:55pm

Welcome home Jason. Sure took you long enough to look us up Wink

This stuff really sucks but there are things you can do to fight back. Why don't you tell us a bit about what you've done that's worked and what hasn't. Then we can make some suggestions on where you might take the battle.

It took me 12 years to get a diagnosis. I found this place within days about a year and a half ago. What I learned here gave me my life back. Don't get me wrong, I still loose a few battles. But I'm winning a lot more now than I'm losing.

Oxygen works great for me as an abortive. What gets past that I treat with Imitrex injections. Fortunately 100% Oxygen via non-rebreather mask at a flow rate of 25 lpm kill 90% of my hits within 10-15 minutes.

I use Verapamil for my prevent. 400mg of regular release a day. That keeps me PF for days at a time. The hits that do break through are easily handled with O2.

That's my magic formula. It's worked for two cycles now. Some day it won't work and I'll have to learn some new tricks. That's the way this works.

Between cycles I live my life. In cycles I live between the hits.

You'll learn how too Cool

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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TarHeel-blues

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Re: wow,guess i shoulda known
Reply #2 - Oct 20^th, 2008 at 10:16pm

well for the first 2 years i just ate bottles of aspirin and boxes of goodie powders,,then i finally seen a neurologist,,started on depakote er500 (4 a day)along with verapimil 240 (twice a day)along with topamax 200(once a day)9mg of melatonin at night,,,imitrex 6mg injections when needed of course problem there is insurance will only give me 8 injections a month,,,so usually after 3rd or 4th day im out and have to go 26 or so days without.lost job and insurance bout 3 yrs ago so when i couldnt afford meds any more i just quit,,and so did the headaches for about 7 months,,,then they just came back and im currently taking lithium 300 4times daily and melatonin at night,and imitrex inj. when i can get my hands on it.ive been seeing my current neurologist for several years and i feel that the relationship is getting stale,,,hes even told me im his toughest case ever..i just feel like i need a fresh start with someone new but dont know where to start..guess i need an actual headache specialist instead of a reg neurologist?and as im sure everyone here already knows any and all help would be greatly appreaciated by me,my wife,and my 3 little ones

jason

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« Last Edit: Oct 20^th, 2008 at 10:16pm by TarHeel-blues »

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Linda_Howell

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Re: wow,guess i shoulda known
Reply #3 - Oct 20^th, 2008 at 11:09pm

Jason,

Go back to that Dr. and ask for a precription for 0xygen. Tell him you need at least 4 to 5 E-tanks per week when in cycle. A regulator that goes to at least 15 lpm with a non-rebreather mask.

This may sound like gobbledy-gook to you right now but trust us.

Compared to the costs of what you were taking...the price of 02 is a walk in the park. So are the side-effects. Imitrex is not good if you have a heart problem, Topomax can cause you to be dumb as a rock and not fit to operate machinery or drive..the list goes on.

you can print this out if you want for your Dr.

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

or

I am so happy you found us. There is no other place where you will find such understanding. You can send me a PM if you need anything. Or you can ask questions right here.

Welcome to the house that pain built.

Linda

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

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BarbaraD

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Hugs to ya

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Re: wow,guess i shoulda known
Reply #4 - Oct 21^st, 2008 at 6:52am

O2 O2 O2 It works for about 70% of us here and we swear by it. BUT it has to be done right to help.

Energy drinks (Red Bull, Monster - just make sure they have caffeine and at least 1000mg of taurine in them) at the START help a lot of us.

Melatonin at night has helped me over the years (I'm chronic).

The BIG secret with docs is building up a repore with your doc. We've learned we have to EDUCATE them. My neuro's first question on my visits is "What have ya'll come up with that's new?" Over the 10+ years I've been with him, he's changed the way he treats CH thanks to this site. He comes here when he has the time and sends his CH patients here.

Welcome ~~to the Funny Farm~~ Clusterville. One thing you'll learn is when we say, "We understand!" WE DO. Most of us have been right where you are. So pull up a chair and read read read. Ask questions - someone will be here to try to answer them or offer support or whatever you need. We're not doctors, but some of these guys are pretty darn smart (did I just say that

).

Hugs BD

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What don't kill ya, Makes ya stronger!

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TarHeel-blues CH.com Veteran Offline I Love CH.com! Posts: 132 matthews nc Gender:	Re: wow,guess i shoulda known Reply #5 - Oct 21^st, 2008 at 6:52am does insurance usually cover the o2?
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: wow,guess i shoulda known Reply #6 - Oct 21^st, 2008 at 11:02am Yes. Check this link out: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Linda_Howell CH.com Moderator CH.com Alumnus Offline Do not feed the Moderators Posts: 11927 Santa Maria, Ca. Gender:	Re: wow,guess i shoulda known Reply #7 - Oct 21^st, 2008 at 12:10pm And Jason..even if your Ins. won't pay for it 02 is pretty cheap. I pay 10.00 per tank. The regulator can be bought on-line for a reasonable price also. If you can't find one...I will send you one in the mail. Linda
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TarHeel-blues CH.com Veteran Offline I Love CH.com! Posts: 132 matthews nc Gender:	Re: wow,guess i shoulda known Reply #8 - Oct 21^st, 2008 at 12:27pm wow i had no idea it was so easy...when you say 10$ a tank are you talking refill?where would i go to buy my own supplies tanks etc? -jason-
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Linda_Howell

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Re: wow,guess i shoulda known
Reply #9 - Oct 21^st, 2008 at 2:21pm

I'm not sure where you live, but look in the yellow pages under oxygen and/or medical supplies for "Lincare" or " Apria" I say these two because they are nationwide and have offices almost everywhere.

When you get the prescription from your Dr. take it in and ask to sit down with a manager. Tell them you don't have Insurance and would they be able to make a deal with you regarding the cost of e-tanks. Make sure you tell them it is for CH. This is what I did and it has worked for almost 22 yrs. now. I had Ins. at the time, but they were charging me 42.00 per tank, the Ins. paid 10 and I was stuck with 32.00 so that is when I asked to speak to a manager and asked them to leave the Ins. Co. out of it. They agreed.

If you have Ins. you may want to give them a call to see if they will cover it though, as I don't know what kind of policy you have. Someone I know here pays 6.00 co-pay for his tanks per month for UNLIMITED amt. of tanks.

You don't actually buy a tank. They give you one, you pay the 10.00(sort of a rental) ...you use it and you bring it back and they swap the empty out for a full one.

Hope that helps a little Jason.

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

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thebbz Ex Member	Re: wow,guess i shoulda known Reply #10 - Oct 21^st, 2008 at 3:09pm Welcome, it's about time you got here. 02,02,02 all the best thebb
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Guiseppi

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Re: wow,guess i shoulda known
Reply #11 - Oct 21^st, 2008 at 5:50pm

Hey another lithium boy! 1200 mg a day is my prevent also, blocks upwards of 80%. Oxygen wipes out most of the rest with the occasional imitrex jab.

For several years my insurance wouldn't cover my 02. Scored a regulator, rented the E-tanks from a local supplier for $4.25 a month, each tank, about $11-13 a refill. So even if insurance won't cover it. it's FAR cheaper then imitrex, none of the imitrex side effects.

Took ya long enough to find us! Welcome home, damn glad you found us.

Guiseppi

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TarHeel-blues

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Re: wow,guess i shoulda known
Reply #12 - Oct 21^st, 2008 at 8:16pm

had no idea it was so cheap to buy that stuff...i wouldnt even have messed with insurance,,believe me by the time bcbs gets done with me even if they cover it ill be paying more in copays than what you are describing,,,,wait i dont think i mentioned earlier today i called my neuro's na and left message asking for my verapimil back and a script for o2(hey shot in the dark)well she called me back not to tell me to stop trying to be a doctor but "the doctor put in the order for the o2"and that some one would be contacting me about it..oh he did say he didnt like the reaction between the verap and lith started me back on topamax...wow i really get rambling on and on huh ,,sorry,and please just tell me if im doing something wrong after all i am a newb

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« Last Edit: Oct 21^st, 2008 at 8:26pm by TarHeel-blues »

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: wow,guess i shoulda known Reply #13 - Oct 21^st, 2008 at 8:30pm I have BCBS and they cover my O2 100%. No copays Please make sure you read through the stickied O2 threads at the top of the medications page. Those two threads have everything you need to know to make sure you're getting the right rig and flow rate. Good luck... -Dennis-
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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: wow,guess i shoulda known Reply #14 - Oct 21^st, 2008 at 9:00pm hmmm m. I had BCBS when they charged me 42.00 per e-tank. Must be a California thing.
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Callico

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Re: wow,guess i shoulda known
Reply #15 - Oct 22^nd, 2008 at 11:09pm

jason,

Don't EVER feel like you are bugging us or asking to much or saying to much, or any other such garbage. That is why YOU are here, and why WE are here! You are where I was several years ago, asking the same types of questions I asked. How do you think I know how to answer??? Grin

Seriously, I am glad you found us, even if you are a Tar Heel. No question asked honestly is a dumb question. You may get some dumb answers, specially if that other Tar Heel, Chuckles (or is he just a heel), answers. Cheesy

(did I really say that?) What you will find is a family of other clusterheads who know where you are and what you are experiencing and CARE. These people have become closer to me than much of my own family, and I couldn't do without them. My wife says I spend more time with them than I do with her.

Jerry

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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)

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