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New Member Old Suffer (Read 935 times)

Tim Cobb

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New Member Old Suffer
Nov 20^th, 2012 at 7:24am

Hi My Name Is Tim 19Th year now and this has been the longest season. In the past they always went away in 16-20 weeks this year I'm in my 8Th month it's like they have transformed. Got worse last Fri went from 3 t0 8 so its been a wicked weekend. going to get oxygen therapy this week take imitrex topamax and calen. So glad to find this site never even thought of looking figured I was on my own. Showed my 16 year old son this sites home page with others stories and he read them came over gave me a hug and said dad I had no Idea I Love you Thanks for being here. Just wondering does anyone else get the constant headache that feels like it could go at any time?

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wimsey1

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Re: New Member Old Suffer
Reply #1 - Nov 20^th, 2012 at 8:04am

Quote:

Just wondering does anyone else get the constant headache that feels like it could go at any time?

Welcome Tim, to the site everyone wishes they did not need to visit. In answer to your question above, if I understood you correctly, yes. We call them shadows. A shadow is actually a low level cluster that presents as a constant background pain that persists after the big hit occurs. They are chs and need to be treated as such with a good abort.

You describe a little bit about your meds but if you care to, could you give us amounts and frequencies? That way we can share with you our experiences with similar treatment plans. One area of concern is your use of the term "O2 therapy." That sounds like a very low level COPD type use of oxygen which is not what we mean when we talk about using O2 for an abort.

In the meantime, welcome. blessings. lance

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: New Member Old Suffer Reply #2 - Nov 20^th, 2012 at 9:35am Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you. CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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Tim Cobb

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Re: New Member Old Suffer
Reply #3 - Nov 20^th, 2012 at 6:45pm

I live in N E Ohio a little town called Farmdale, and take 200 mg of topamax and 240 mg of varapamil a day my prescription for oxygen is 10-12 l at onset of attack for 15 -30 min. I thank you for the information about the "shadow" often wonder about that try to describe it to the neurologist but she don't seem to understand seems like she thinks its a rebound. Sometimes I carry those for hours and as soon as I lay down the ch comes I'll take a shot and then it goes away and I can get 4-6 hrs of good sleep, so I kinda don't mind them.

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Kevin_M

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withered branches grow
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Re: New Member Old Suffer
Reply #4 - Nov 20^th, 2012 at 7:55pm

Hi Tim

Oxygen, and it appears Imitrex shots have been prescribed, as well as preventives. You've not had a bad start with the docs.

Quote:

"shadow"

Sometimes I carry those for hours and as soon as I lay down the ch comes I'll take a shot and then it goes away and I can get 4-6 hrs of good sleep, so I kinda don't mind them.

This seems like your preventatives are just barely holding. I was wondering if you talked to your doc about stepping up from 240mg/day to 360mg of the calen (verapamil), maybe this would stop the shadowing and night hit. It sounds like you are on the verge of prevention, but just shy of getting there.

I'd understand being thankful while in cycle for 4-6 hours of good sleep, but if prevention is barely undergunned, a step up might hold things in check for you. If a next step in treatment were looked for, this might be a consideration. Any help using oxygen, let us know.

Welcome

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Skyhawk5

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Re: New Member Old Suffer
Reply #5 - Nov 20^th, 2012 at 10:11pm

Welcome to CH.com,

If you haven't already pls read the link below on O2 (oxygen). Most Doctors are not up on the best O2 for CH. We need at least 15LPM on the regulator thru a NON-rebreather mask with a bag on it, and no open holes on the side of the mask.

Higher LPM is even better but we have to take this into our own hands in most cases. 25LPM is much better than 15LPM. I use up to 60LPM with a regulator I ordered from Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

, no Rx required, or reg's can be found on ebay, prices vary. Pls read the link to get a good idea of what is needed.

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

Don

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

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Tim Cobb CH.com Junior Offline I Love CH.com! Posts: 41	Re: New Member Old Suffer Reply #6 - Nov 21^st, 2012 at 7:13pm Thanks for the info will talk to doc next Mon. I'll have time Fri to go for O2 so will find out about mask then.
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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
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Re: New Member Old Suffer
Reply #7 - Nov 22^nd, 2012 at 12:45pm

Hey Tim,

Welcome to CH.com. You've come to the right place...

When you see your doc on Monday to ask for an Rx for oxygen therapy, ask for the script to be written for a flow rate of 25 liters/minute... If he gets hissy or looks at you like you're speaking in tongues... settle for a flow rate of 15 liters/minute...

If he blows you off on the Rx for oxygen therapy... trot on down to Harbor Freight Tools and pick up one of their welder's oxygen regulators for $35. You can pick up an M-size oxygen cylinder at most welding supply stores... The prices vary on the cost of the cylinder... but once you own it, refills run $20 to $30... That's about what you would pay for medical oxygen refills...

Regarding the oxygen mask, order one of the $27.50 O2PTIMASK™ kits today from the CH.com store in the yellow tab at the left of this screen. You won't be sorry... The 3-liter reservoir bag lets you inhale a lung full of oxygen in a single gulp...

You can't do that with the El Cheapo $1.50 disposable non-rebreathing oxygen masks with a 1-liter reservoir bag... These POS last a month if you're lucky where the O2PTIMASK™ kit will last for years... I bought one in 2008 and it's still working great.

One last thing... When you see your doc, ask for a lab test for 25-Hydroxyvitamin D. It's also known as 25(OH)D. This is the serum level metabolite of vitamin D3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL

I suspect you are vitamin D3 deficient as nearly all CH'ers who have gone in for this test with active CH have all come back with serum concentrations of 25(OH)D less than 30 ng/mL, i.e., deficient in vitamin D3).

What we've discovered over the last two years is most CH'ers suffer needlessly from our disorder due to a vitamin D3 deficiency that's easily and inexpensively remedied with the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3.

At my last tally, 76% of the 250 CH'ers who started this regimen experienced a significant reduction in the frequency, severity and duration of their CH... 70% of the 250 had a pain free response.

See the following two links for details:

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

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

Take care,

V/R, Batch

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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Tim Cobb CH.com Junior Offline I Love CH.com! Posts: 41	Re: New Member Old Suffer Reply #8 - Nov 22^nd, 2012 at 3:17pm VR, A Pharmacist friend of mine was ordering me d3 when my Ch's would hit but Walmart fired her for no specific reason and I don't know where she is now. I wondered about the effect she was right just wasn't taken enough apparently.
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