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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › New to this amazing community

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New to this amazing community (Read 959 times)

Franz

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New to this amazing community
Aug 26^th, 2013 at 10:06am

Hi there!

Been checking around this site for a couple of days now and you can't believe the feeling I got when I read the stories you other guys share. Well I'm no longer alone out there

There seem to be some huge knowledge among people here and willingness to share with each other. Brilliant

Well I'm Franz, 32 years old from Sweden. First time with ch was 2005. Having clusters every 2 years since then in the autumn. Clever one to keep up with the timeframe.. Diagnosed in 2009. Been in the cluster for 3weeks now. Expect it to last another 3-4 weeks.

Have been on different types of triptans but now I'm testing O2, had it for two weeks. Just ordered a better type of breathing mask thanks to this community

O2 works sometimes for me, just asked my supplier for bigger tanks Wink

I will also try the vitamin d3 therapy I've starting to study.

Take care! /Franz

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maz

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Hampshire, England
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Re: New to this amazing community
Reply #1 - Aug 26^th, 2013 at 11:01am

Hi and welcome to the family. Smiley

You need a non-rebreather mask (the one with the bag on it) for the O2, and a high flow rate. 25lt per minute I think. The D3 regime seems to have taken the boards by storm. It's been successful for so many, and often in just a few days. It's so simple that I don't understand why the doctors didn't come up with it years ago. Good luck with it. Have you had sumatriptan auto injections? It works as an abort for me every time, and I am completely pain free in less than 10 minutes. The tablets and sprays take too long to work.
You'll find all the help and friendship you can get right here, from all over the globe. Cluster heads are the best people in the world. It's so good not having to explain.
Good luck
Maz.

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Franz

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Re: New to this amazing community
Reply #2 - Aug 26^th, 2013 at 11:41am

Hi Maz!

Yes I've ordered the mask from this site, just hope i will get it as soon as possible. Couldn't find it in Europe, did call my contact at the hospital and she promised to look it up and get back to me. Hopefully it will be enough with 15l/ min which is max flow rate with the regulator I got at the moment. Will check out bigger ones otherwise.
The routin at the moment is 15min inhale, 5min dip head in icy water, 10 Min inhale... Works with minor attack anyhow..

Yes I do have sumatriptan injections, they do abort an attack. But I rather not use them cause I always have feel dizzy after the attack runs out. Also an "burning sensation" in my skin. But if you got to go you got to go right

About the vitamin regim, the unit IU is a little confusing to me. I've read in this forum, 10000 IU is a good starting level. I've package with pills, 25microg/pill. Do you now if this is correct, 1IU = 0,025microg? In that case, 10000 IU wold be about 10 pills from this package?

Thanks a lot for the response!
/Franz

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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 to this amazing community
Reply #3 - Aug 26^th, 2013 at 11:51am

Hey Franz,

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

Is AGA still the primary home oxygen provider in Sweden? The last time I was over your way they were planning on using the Linde Integrated Valve (LIV) oxygen delivery system with the regulator integrated into the oxygen cylinder. As I recall the max flow rate available was 15 liters/minute.

Be sure to get the lab test for 25(OH)D, the metabolite of vitamin D3 used to measure its status... If you're experiencing a cluster cycle, the odds are you're 25(OH)D serum concentration will come back deficient or near the low end of the normal reference rang...

We CH'ers need to keep our 25(OH)D serum concentration up around 85 ng/mL, (212.5 nmol/L) to remain pain free and still have sufficient reserves of this metabolite to fuel our immune system... That usually requires a daily vitamin D3 intake of 10,000 IU/day plus the cofactors.

Regarding the conversion of International Units (IU) vitamin D3 to micrograms vitamin D3. You've got the right conversion factor...

10,000 IU/day vitamin D3 = 250 micrograms/day.

When you go in for the 25(OH)D lab test, ask your PCP/neurologist for the higher strength vitamin D3 capsules.

Take care and again, welcome to CH.com.

V/R, Batch

« Last Edit: Aug 26^th, 2013 at 12:01pm by Batch »

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maz

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Re: New to this amazing community
Reply #4 - Aug 26^th, 2013 at 12:00pm

Hi, Where are you. I'm in England. Just looked at my bottle of D3 and it says 5000 iu is 125 mcg. That's in small print on the back of the bottle. It clearly says 5000 iu on the front. I don't know if the packaging would be the same where ever you are. Have a look at iherb.com. I have only just found the site myself so not bought from there yet. It's all in US dollars but seems very reasonable. They have 10,000 iu so less pills to swallow.
I know another ch'er who lives near me and she has a non-rebreather mask but not sure where she got it. Her O2 is via the NHS and I assumed the mask too, but could be wrong. I'll ask her.
I am very lucky with the injections. I get no effects what so ever, except blessed relief. They are my magic bullet and I go nowhere without them. Smiley

Hope this helps
Maz.

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Franz

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Re: New to this amazing community
Reply #5 - Aug 26^th, 2013 at 12:46pm

Well I surely have come to the right place

Batch -
Thank you for your comment!
For now the provider is Aiolos Medical. Yes it's an integrated system, have pic but cant post it yet Wink

easy to use but maybe to low flow, max 15l/min..We'll see..

I will check this lab test next time I talk to my doctor. I will probably have to print some of the text you've written and bring it. Thanks for all the info and effort, will definitely study this harder

Maz-
I'm living in Sweden, Norrköping. Eastcoast

Will look around for " bigger" pills. I'll bet there's some regulations in my country.. There always are.. I'll take any suggestions, thanx!!
Yes I always carry around injections to if I have to go somewhere, not easy to hid a 1000l tank in my pocket Smiley

. Sorry to say that most of the time I feel stuck at home.. Hoping to get to watch soccer tonight, Man U - Chelsea Wink

Thanx again guys!
/Franz

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Franz

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Re: New to this amazing community
Reply #6 - Aug 27^th, 2013 at 6:28am

Talked to my supplier today and they offered me to try the demand valve system. After reading around this site this seems to be maybe the best O2 system out there. Feeling very lucky to be given this oppurtunity. Going to try it tomorrow. Just worrying about travel but guess i will bring injections just in case. Any tips for breaking attack while in car??

And about vitamin d3 test. Talked to a nurse, that's the common way here to start when to get hold of any doctor. She was very sceptic, going on about it as experimental and telling me i needed an referral from my neuro to get the test. So guess ill start hunting him down

not always that easy.. Sad

/Franz

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