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Kurtz99

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Hello new here
Mar 26^th, 2016 at 4:41pm

Hi everyone,

I've been looking over this site for a few years now and thougtht that i would try to be active as i start this new cycle.

I started getting ch about 10 years ago. luckily my last cycle was over a year ago ., my heart goes out to all the chronic sufferers out there. i wish you the very best. as of now im only getiing one attack at night, which is something new. my normal cycles usally jump right in to 4-5 a day. another bright side is the most recent one was only a shadow. im not sure why, i guess i'll know more tonight. as for now, im left with the feeling that something just isn't right. i'm not sure how to explain it. almost like a constant pressure on my head that lets me know im in a cycle.

Anyway, going to doc to get meds in 2 days as he wouldnt send any to the pharmasist. so i'm on my own till then. but, i'm not confinced of there effectiveness anyhow. its strange, one cycle i had good results from depakote. but same treatment failed on another. last time verapamil helped, im guessing i'll try that again. well i'm starting to ramble. i just wanted to introduce myself and let you all know i'll try and be more active in the future

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Peter510

CH.com Alumnus

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Don't give out... But
don't give in.

Posts: 966
Wexford. Ireland
Gender: male

Re: Hello new here
Reply #1 - Mar 26^th, 2016 at 4:50pm

Kurtz,

Welcome to CH.COM.

Get some energy drinks (Red Bull or similar) and wolf one down as soon as you feel a shadow.

Before you go back to your Doctor, who I hope is a Headache Specialist and not a General Practitioner, read the thread "123 days pain free...". It can be found in the Medications and Treatments Section.

Then post questions here and by the time you do see a Doctor you will have a lot of knowledge to share with him/her.

In the meantime, post here anytime. There's always someone who will respond.

Peter.

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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3706
Bremerton, WA
Gender: male

Re: Hello new here
Reply #2 - Mar 27^th, 2016 at 1:47am

Hey Kurtz,

Welcome to CH.com. You've come to the right place. We know what you've been going through and the good news is it doesn't need to be that way.

Be sure to ask you PCP for the lab test of your 25(OH)D serum concentration. 25(OH)D is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for 25(OH)D is 30 to 100 ng/ml, (75 to 200 nmol/L).

Unfortunately most physicians will interpret 31 ng/mL as "normal." Nothing could be further from the truth. While that much 25(OH)D will prevent rickets, it won't do diddly squat for cluster headache. As cluster headache sufferers we need to maintain our 25(OH)D around 80 ng/mL to remain CH pain free.

Take care and please keep us posted.

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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Mike NZ

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Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: Hello new here
Reply #3 - Mar 27^th, 2016 at 2:56am

Hi and welcome Kurtz

Since you've been reading through the site for a while you should have a good idea but any questions you have, just ask.

What meds do you have from the doc? Have you abortives (oxygen and imitrex) too to kill off CHs that you get?

For shadows, energy drinks like Red Bull can work pretty well.

One thing that we've seen a lot is that CH can change on you between cycles, so it could be a preventive that worked doesn't or needs higher doses, the side can change and more. It's good at keeping us on our toes.

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Batch CH.com Alumnus Offline Control The Beast With O2 & D3 You Must Posts: 3706 Bremerton, WA Gender:	Re: Hello new here Reply #4 - Mar 27^th, 2016 at 11:30am Kurtz, Check your PM InBox in the upper left corner of this page under the date. I've left you some additional information on lab tests. Access your InBox by clicking on the words in bold saying "you have 1 message ." Take care, V/R, Batch
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Michael63

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Re: Hello new here
Reply #5 - Mar 28^th, 2016 at 11:43am

Welcome Kurtz,

As a newbie here myself, and a 34 year CH'er, I must say that in the month since I joined, I have gotten more relief both physically and mentally since I started.

Take the information and make it work for you. The friends here on the site are understanding and sympathetic. The knowledge contained is outstanding.

I started the D3 therapy about 3 weeks ago and the results are amazing. I still get shadows, but the pain is minimal to what it was before.

Read, when you get tired of reading, read some more.

Michael

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Hello new here Reply #6 - Mar 28^th, 2016 at 1:29pm Michael, Great to hear that the D3 is working for you. Keep well, Peter.
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Michael63 CH.com Junior Offline I Love CH.com! Posts: 45	Re: Hello new here Reply #7 - Mar 28^th, 2016 at 1:59pm Thanks Peter, It's not perfect yet but I am proceeding forward with the utmost hope for completely PF days. Michael
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Hello new here Reply #8 - Mar 28^th, 2016 at 3:52pm Good stuff Michael. Gotta keep taking it forever. You can't stop when you think the Beast is under control, it will still be waiting to pounce. Anyway, there are countless other benefits to be had from the regimen. Peter.
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Blue Meanie

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Re: Hello new here
Reply #9 - Mar 29^th, 2016 at 5:50am

Welcome Kurtz. As Peter said, get some Red Bull or Monster drink 12 or 16 oz and drink as fast as you can as soon as you know the shadow is turning into an attack. It's been stopping 2 out of 3 of mine so far which really surprises me, I never thought it would work until I tried it. If it's an attack that wakes you and it's too late don't bother, use the trex instead.

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