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Tuxguy

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MY FIRST DAY!
Jan 12^th, 2010 at 7:26pm

Hello, My Christmas gift this year was finding out what these horrible Headaches were called. First let me start by saying I'm 52yrs young and have been active and out going all my life. 2 years ago around the Holidays I had a mass about the size of a marble taken off my pituitary, 2 years later it still is not working. The good news is they make meds that will replace everything that it used to make........kind of!! Your never the same.
So now, about 2 months ago I started having the worst headaches Over my left eye. The other surgery was the right side so I guess it was trying to even things out. Undecided

2-3-4 hrs of the most intense pain Ive ever had or could imagine. Feels like I took a railroad spike and pounded it into my head. Tears, my eye droops, and all i want to do is ........I can't bring myself to say it........ Ive never thought of suicide before but this brings me real close. To much to live for thank God.
Finally I went to my Dr. and he called it first thing after I described the pain and everything. Merry Christmas!
I'm taking a low dose Blood presser medication, something else and the best so far....but not everytime is the high dose Oxygen.
I'm glad that I found this site

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

or

[/email][/media][/email][/media][/email]

and can maybe learn some things from all of you. Think about it, How lucky can we be to be part of the 1% of the population that gets these.
Im on my 3RD month of having these everyday!! Some days better then others but so far EVERY DAY!!!! Angry

And like clock work, here one comes Cry

so i will get back to you folks later, thanks,
Tuxguy

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Chad

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Re: MY FIRST DAY!
Reply #1 - Jan 12^th, 2010 at 7:36pm

Welcome Tuxguy, sorry you had to find this place, but I will assure you, it's quite comforting to know you're not the only one dealing with this beast.

I saw you said about high dose oxygen. You're on the right track there. That seems to be the winner here for abortive methods omitting the drugs. Just browse around and read everything and ask everything. When I came here first I only knew of Imitrex and a couple other prevents, but since I have asked and browsed around, I have found many methods, therapies, drugs and just very supportive people who will become your second family.

If you have any questions, just ask.

Wishing you PFD's

Chad

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When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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anthony g

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Re: MY FIRST DAY!
Reply #2 - Jan 12^th, 2010 at 8:28pm

tuxguy
i am new to this site myself and sorry you are here but welcome!! I can assure u this site is a godsend and helped me soooo much to fight this "beast" the best ways possible! just started with 02 and its the way to go for sure! I also am a fan of the imitrex injection i use the imitrex tip on the left using a third of the vile and it is plenty 3 shots in one cant beat that!
ask away my friend!!!

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Tuxguy CH.com Newbie Offline I Love CH.com! Posts: 11 mcminnville Or. Gender:	Re: MY FIRST DAY! Reply #3 - Jan 12^th, 2010 at 8:50pm Thank you! I knew something was not right when the pain went to a 15 on a scale of 1-10. My girlfriend has seen me in pain before, but this is unbelievable. Thanks again and I look forward to getting to know you people more. Tux
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: MY FIRST DAY! Reply #4 - Jan 12^th, 2010 at 11:44pm Welcome to CH.com. When we talk about high flow O2 the following is what we mean. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
Back to top	« Last Edit: Jan 12^th, 2010 at 11:44pm by Skyhawk5 » Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

bejeeber

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Re: MY FIRST DAY!
Reply #5 - Jan 13^th, 2010 at 11:16am

Tuxguy wrote on Jan 12^th, 2010 at 7:26pm:

...... can maybe learn some things from all of you.

Hey that ain't no MAYBE, that's a DEFINITELY..

I'm just speaking as someone who has had remarkable success so far controlling this beast through a combination of:

1) what I have learned here
2) a bit of luck thrown in

Lots of success stories here and your responders who have piped in already are some especially good people to have 'round at times like this.

Glad to see you've come through being dealt this lousy hand with a good sense of humor intact, and that you're even onto hi flow O2 therapy (with non rebreather mask?).

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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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Linda_Howell

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Re: MY FIRST DAY!
Reply #6 - Jan 13^th, 2010 at 12:05pm

The high-flow 02 is a REALLY good start. 02 is an abortive. Exactly how high does your regulator go to though. Some Dr's who are not educated in this condition only precribe 02 at 8 to 10 liters. Most get relief at much higher flow rates, like 25 to 45 lpm

Are you on a preventative of any kind? Like Verapamil or Lithium?

Cold packs to the affected side and chugging an energy drink like Red Bull or Rock Star at the 1st. hint of a hit works too. Make sure the energy drink has 1000mg. of Taurine in it as well as Caffeine. They work together better than caffeine alone. Although massively strong coffee works too.

Welcome to our world. So sorry your're here, but we'll all try to help you however we can. Someone said a sense of humor is important. Around here....it's a requirement. Grin

Linda

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Tuxguy

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Re: MY FIRST DAY!
Reply #7 - Jan 13^th, 2010 at 11:02pm

On the Oxygen, my gauge is set at 6. and no mask, just tubes in my noise. and the meds so far are a low high blood pressure med. sorry I will find out name and post later.
a little more info on me, because of the pituitary not working I'm on growth hormones, testosterone, hydrocortizone (sp), thyroid meds etc. also on enbrel for psoriasis. My meds list just keeps growing. Cry

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bejeeber

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Re: MY FIRST DAY!
Reply #8 - Jan 14^th, 2010 at 11:40am

Oh. 6 LPM and tubes in nose......that's some low dose O2.

But what a hopeful sign! If you're getting some results, even though inconsistent, with that approach, just think what your success rate may be when you step up to the big leagues! Smiley

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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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Tuxguy

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Re: MY FIRST DAY!
Reply #9 - Jan 15^th, 2010 at 8:27pm

this is tuxguys girlfriend. I am so glad he has found this site and some positive feedback. We have been dating for over a year now and I am somewhat educated on all of his meds and medical problems. I have seen him in some pain, but this one is unreal. I can see the pain coming on and i watch him turn from the fun loving man I fell in love with into a grouchy, uncommunicative person I don't recognize. I fully understand chronic intense pain and would do anything to help him. Any suggestions on how I can help him through this would be greatly appreciated. I feel so helpless. thank you tuxguy'sgal
Undecided

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Chad

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Re: MY FIRST DAY!
Reply #10 - Jan 16^th, 2010 at 8:07am

Tuxguy wrote on Jan 15^th, 2010 at 8:27pm:

this is tuxguys girlfriend. I am so glad he has found this site and some positive feedback. We have been dating for over a year now and I am somewhat educated on all of his meds and medical problems. I have seen him in some pain, but this one is unreal. I can see the pain coming on and i watch him turn from the fun loving man I fell in love with into a grouchy, uncommunicative person I don't recognize. I fully understand chronic intense pain and would do anything to help him. Any suggestions on how I can help him through this would be greatly appreciated. I feel so helpless. thank you tuxguy'sgal
Undecided

Greetings Miss Tuxguy!

All I can say is some clusterheads like to be alone and some like somebody to be there as comforting support during the hit. I personal dance alone upstairs (that's where I keep the O2 anyway) away from my wife and kids. She is very supportive about it and lets me have my time. I come downstairs when it's over and go on with my life. This is a hard to do, but never think of the next hit because it will drive you nuts. It's great that you're here discussing this as a supporter because some GF's and spouses don't support and that's when it's time to move on.

I wish Tuxguy pain free days real soon!

Peace,
Chad

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« Last Edit: Jan 16^th, 2010 at 8:09am by Chad »

When the PAIN starts, I FIGHT back!

Rivea Corymbosa seeds were my KO punch, now D3 is the front runner!

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Tuxguy CH.com Newbie Offline I Love CH.com! Posts: 11 mcminnville Or. Gender:	Re: MY FIRST DAY! Reply #11 - Jan 16^th, 2010 at 5:59pm Thank you Chad, I'm just learning about CH as he is living it! I just want to make things as easy for him as possible. Tuxguy's girlfriend
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: MY FIRST DAY! Reply #12 - Jan 16^th, 2010 at 6:19pm Tuxguy's gal - You might want to take look at the Supporter's Corner board on this webiste. Lots of good stuff there for the precious ones who support us.
Back to top	"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so." --Ayn Rand IP Logged

Skyhawk5

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Re: MY FIRST DAY!
Reply #13 - Jan 16^th, 2010 at 6:48pm

Tuxguy & Girl,

When it comes to using O2 to abort CH, the nose tubes (nasal canula) are almost worthless. You are only getting 50% or less of the O2 you need. We need 100% and this requires a NON-REBREATHER mask (with a bag).

Most Doctors are not educated about the modern use of O2 for CH so don't count on them knowing. Even though 6lpm is low for CH, with the right mask it is MUCH more helpful.

If you happen to live in southeast Michigan I will get in my truck and bring you one. Or PM me your address and I'll mail one. Yes it's that important..

Educate yourselves about CH, this is in your best interest and usually required to get the best treatments.

Good Luck, Don

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Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Lefty CH.com Alumnus Offline Posts: 759 Gender:	Re: MY FIRST DAY! Reply #14 - Jan 18^th, 2010 at 5:55am Hi Tuxguy and welcome, Lap up all this sound advice that you have been given and you should be able to take control back from the beast... Lefty...!
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