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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › hello fellow suffers, new member here

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hello fellow suffers, new member here (Read 1236 times)

MichaelFrancis

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to those who hate truth,
truth sounds like hate...

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Rhode Island
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hello fellow suffers, new member here
Nov 15^th, 2017 at 9:25am

well, after 10 days of suffering, this latest episode had me seeking out a community of people who would understand my condition and maybe even offer some advice. My story is pretty typical I believe, I'm 62 now and through most of my life I suffered from headaches that most everyone, including me, thought were sinus headaches. Then about five years ago, I stumbled upon the cluster headache definition and yelled "eureka!" , the description was spot on. From that point I watched the seasons, full moons, equinox etc. I monitor my alcohol intake, and watch for other triggers. Last year I helped my doctor help me by describing my clusters to him. Being unaware, he took a few days to do research and then we met again and I now have 20mg of nasal sumatriptan. This is a Godsend for me. Last night it took a 8 headache and brought it to a 1 in 20 mins, allowing to fall sleep at 4am. I had been awakened at 1am with the pain. In the past ten days I have had five headaches varying between 5 and 8 in severity. Prior to this I had not had a headache since mid September. As the holidays approach I'm hoping to get this under control so my Christmas with family is not ruined like last year.

So a few questions if I may:

many times if I wake with a 2/3 headache I can take Excedrin Migraine and stop it there. If I wait, they do no good. But during a cluster it isn't feasible to keep taking Excedrin is it?

Over these past 10 days I've used the nasal spray three times and only when I could no longer tolerate the pain at all. For example last night I paced, took showers, held a warm compress on my temple, walked outside, swore, until finally at 4am I snorted... , is 3x20mg over ten days a bad thing? I know it's an expensive thing. LOL

I started tracking using the iPhone APP called MigraineBuddy, does anyone here use this also?

I believe I have determined there is a strong correlation with the changing seasons,

So, sorry for the long intro but I eager to read any feedback at all... God Bless

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maz

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Hampshire, England
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Re: hello fellow suffers, new member here
Reply #1 - Nov 15^th, 2017 at 9:51am

Hi Michael, and welcome. Your story is typical of many of us.

Firstly, don't waste time with pain killers. Because of the nature of the beast, painkillers - even morphine, don't work.

Sumatriptan is the best abortive drug. As your doctor is now on board ask him to prescribe the auto injections. They will kill off the biggest CH in 5 - 10 mins. You can only use 2 per day, and I know they are expensive where you live, but they can be split so you can get 4 or even 6 doses from 2 injections.

Ask also for oxygen to use at home. This can be used as often as you like with no danger at all. I use it at home and save my injections for when I'm out. If your doc agrees you must have a minimum flow of 15 liters per minute, and a non rebreather mask. Get these wrong and it won't work. It's great for night times - I just keep it beside the bed and get on it the moment I wake with pain. An average CH can be stopped in about 10 - 15 minutes.

A red bull or similar energy drink containing caffiene and taurine, is well known for helping to stop the CH from developing into a bad one. It needs to be gulped down really fast ( you need a sudden hit) and at the very first sign of pain. It doesn't work for every one, but does for many so worth a try.

Search around the site for a thread called 123 days pain free, about a vitamin D3 regime. It's a very long read so make sure you have plenty of time. Batch - it's creator - is a great guy and has helped so many of us. If you send him a PM he'll help you.

I can't answer your question about the nasal spray - I haven't used it, but I can tell you the injections probably saved my life - certainly my sanity. I never leave home without them. Don't bother with the tablets - they take too long to get into your system.

Read all you can here. There is more knowledge about CH here than any doctor can give you. Let us know how you get along.
Maz.

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Batch

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Control The Beast With
O2 & D3 You Must

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Bremerton, WA
Gender: male

Re: hello fellow suffers, new member here
Reply #2 - Nov 15^th, 2017 at 9:52am

Hey Michael,

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.

For starters, you're likely vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your CH.

Many of us have been taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 fish oil and the vitamin D3 cofactors to prevent our CH.

I estimate over 700 CHers have started this regimen since I began posting my experiences with it in December of 2010. 80% of CHers who start this regimen experience a significant reduction in the frequency of their CH from an average of 3 CH/day down to 3 or 4 CH/week within the first 30 days. Over 50% of CHers taking this regimen experience a complete cessation of CH symptoms in the first 30 days.

The following chart from the ongoing, online survey of 215 CHers taking this regimen illustrates the response rates by day from start of regimen.

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

You can download a copy of the anti-inflammatory regimen CH preventative treatment protocol at the following link. It really works.

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

I had this PDF file posted on the VitaminDWiki website on the 21st of January of this year. I just checked, as of this morning, readers of this website have downloaded 4151 copies of this treatment protocol.

It sounds like you've a great doctor so be sure to take him a copy of this treatment protocol and discuss it with him. That way you'll both be singing from the same sheet music when you ask for the lab test of your serum 25(OH)D.

Take care and please keep us posted.

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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