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maalstroom

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''Dance to my tune''....
the hell I will!

Posts: 491
the Netherlands
Gender: male

Greeting from Maalstroom to all my clusterkinsmen.
Jun 4^th, 2008 at 8:45am

Hi y'all, I'm Maalstroom, a 33 year old clusterheaded male from the Netherlands, who is currently in cycle again for a little less than a month now. Haven't been in this hell since late 2005 and had almost forgotten the Beast.
I've been diagnosed with CH when I was 17 or 18 by a very alert doctor, so I've been spared the hell of not knowing what I had, as I read in several posts here, and very grateful for it.
For now I'll keep it short, but ask me anything if you like, and hope to become a proud member of this family Wink

!

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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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CostaRicaKris

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Currently training for
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San Diego, California
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Re: Greeting from Maalstroom to all my clusterkinsmen.
Reply #1 - Jun 4^th, 2008 at 9:06am

Welcome Maalstroom!
Sorry you have to be here but glad you found us.
What meds are you currently using?

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sandie99 CH.com Hall of Famer Offline Wish it, dream it, do it - inspite the pain! Posts: 11975 Finland Gender:	Re: Greeting from Maalstroom to all my clusterkinsmen. Reply #2 - Jun 4^th, 2008 at 10:20am Welcome to the family, Maalstroom! I'm sorry that you have ch, but this the place to be when you do. I hope that the beast will leave you alone soon! Wishing you PF days, Sanna
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Greeting from Maalstroom to all my clusterkinsmen. Reply #3 - Jun 4^th, 2008 at 10:38am Welcome Maalstroom! Sorry you have to be here but please know that you are among friends. The people here are amazing. You'll find that out soon! PF wishes! Jeannie
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Greeting from Maalstroom to all my clusterkinsmen. Reply #4 - Jun 4^th, 2008 at 10:14pm maalstroom wrote on Jun 4^th, 2008 at 8:45am: hope to become a proud member of this family ! You already are. I just took you 26 years to figure it out Welcome home my clusterbrother... -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Greeting from Maalstroom to all my clusterkinsmen. Reply #5 - Jun 4^th, 2008 at 11:25pm When you get a chance, give us a run down of your regimen, what does and doesn't work etc. The combined knowledge is what makes this place what it is. Welcome home brother! Guiseppi
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Pinkfloyd CH.com Hall of Famer Offline comfortably numb Posts: 1626 x0\|\|USA\|\|\|\|IL,Illinois Gender:	Re: Greeting from Maalstroom to all my clusterkinsmen. Reply #6 - Jun 5^th, 2008 at 12:00am maalstroom wrote on Jun 4^th, 2008 at 8:45am: Hi y'all, I'm Maalstroom, a 33 year old clusterheaded male from the Netherlands, ! Quick, get a supply of those paddos from the smartshops before they shut things down!!! Bobw
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maalstroom

CH.com Old Timer

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''Dance to my tune''....
the hell I will!

Posts: 491
the Netherlands
Gender: male

Re: Greeting from Maalstroom to all my clusterkinsmen.
Reply #7 - Jun 5^th, 2008 at 8:14am

OMG everyone, thanx so much for this warm welcome, didn't expect that... For now I am using Imitrex (called Imigran in the NL), but I have an appointment with the neurologist first thing tomorrow, coz this is my worst cycle since a decade orso. Sure, they're all horrible, but this one is particularly nasty... guess you guys and dolls know which ones I mean.
In the past I had Sandomigran/Pizotifeen (no idea what it's called in English) as a preventative, but it did nothing for me. Only the Imitrex seems to work, but can't take it for every hit.... so I'll be pressing for Oxygen. I'll keep y'all posted about tomorrow! Thanx again for you kind hearts!

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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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maalstroom

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''Dance to my tune''....
the hell I will!

Posts: 491
the Netherlands
Gender: male

Re: Greeting from Maalstroom to all my clusterkinsmen.
Reply #8 - Jun 6^th, 2008 at 11:19am

As promised, I'd come back today to tell about my appointment with the neurologist this morning.
Well, he was amazed that I endured them all this time with only Imitrex, and said no one deserves to live in this kinda pain... he's right about that. Anyway, monday I'll be starting on Verapamil, first week 2 a day,building up from there. He also subscribed me oxygen as a first choice of abortive, which will be delivered at home. Probably monday also.
Furthermore I got 10 more injectables, which is always great Grin

!
As being a virgin on the oxygen and verapamil roadshow, anyone having any suggestions, things to keep in mind? All wll be greatly appreciated!

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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Greeting from Maalstroom to all my clusterkinsmen. Reply #9 - Jun 6^th, 2008 at 11:57am Be sure to give the Verapamil a fair chance...........It takes time to build up in your system. It might also make you feel very lethargic..it gets better though! Jeannie
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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Greeting from Maalstroom to all my clusterkinsmen. Reply #10 - Jun 6^th, 2008 at 1:40pm Go here and read everything! This'll get you on the road to effective use of O2. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or -Dennis-
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maalstroom

CH.com Old Timer

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''Dance to my tune''....
the hell I will!

Posts: 491
the Netherlands
Gender: male

Re: Greeting from Maalstroom to all my clusterkinsmen.
Reply #11 - Jun 7^th, 2008 at 2:09am

Jean, I will, and Dennis, thanx for that link - all very usefull. Really glad I found this site with all the wonderful folks on it. CH.com rocks.
Seems like our affliction is kinda rare... I don't know anyone personal who suffers from it too, which is a lonely feeling. Just for that this site helps me, and for numeral other reasons as well.
I read that in the Netherlands, a densely populated but small country (I guess it's about the size of Maine) with a little less than 17 million inhabitants, there are only 6000 to 7000 ch sufferers. No wonder you never meet any others.
Have been reading alot here those last few days, and have learnt so much. I remember when first diagnosed in the nineties going to the library, to look up some info on CH, and finding almost nothing. Sure, there's tons of books on migraine and tension headaches, but our little friend is pretty much ignored (at least here, dunno about the US).
Anyway, this site has shown me how less I know, except for my own experiences, though I have tried to educate me before. There was just nothing. Untill now! Cheesy

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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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maalstroom

CH.com Old Timer

Offline

''Dance to my tune''....
the hell I will!

Posts: 491
the Netherlands
Gender: male

Re: Greeting from Maalstroom to all my clusterkinsmen.
Reply #12 - Jun 10^th, 2008 at 9:00am

Started yesterday with the Verapamil, twice a day 120 mgs, and next monday I'll have to start with 4 tablets, which will count up to 480 mgs daily. Is that an amount that'll work for most, as I've seen posts of people taking 600 a day.
Still no oxygen delivered, hope to hear something today.

Woke up in the early hours with a mild attack, so I took an Imitrex tablet.... boy was I wrong! Some 10 or 15 minutes after I took the pill, my hit worsened to a 9, and by that time it was to late to take an injectable. Does that ever happen to you, that a hit will fool you into thinking it won't get past a 7? Now I can laugh about it, but this one had me close to tears earlier on!

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...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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Charlotte

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Posts: 2385
Patterson,California
Gender: female

Re: Greeting from Maalstroom to all my clusterkinsmen.
Reply #13 - Jun 10^th, 2008 at 9:28am

maalstroom wrote on Jun 10^th, 2008 at 9:00am:

Started yesterday with the Verapamil, twice a day 120 mgs, and next monday I'll have to start with 4 tablets, which will count up to 480 mgs daily. Is that an amount that'll work for most, as I've seen posts of people taking 600 a day. -

if you can space them during the day, I've found my 80mg direct release four times a day works very well, so your 120 mg 4 times a day might work better than 240 twice a day.

Still no oxygen delivered, hope to hear something today. -

When you follow up, ask the Dr for the higher flow. My doc prescribed a lower flow so I have a concentrator that goes to 10, and it works especially since the meds have most hits down to 2 to 7 level, but it takes a full 20 minutes where I've heard a higher flow can abort in much less time.

Woke up in the early hours with a mild attack, so I took an Imitrex tablet.... boy was I wrong! Some 10 or 15 minutes after I took the pill, my hit worsened to a 9, and by that time it was to late to take an injectable. Does that ever happen to you, that a hit will fool you into thinking it won't get past a 7? Now I can laugh about it, but this one had me close to tears earlier on!

- sorry, bud, yes I misjudge too and then just have to ride it out.

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« Last Edit: Jun 10^th, 2008 at 9:38am by Charlotte »

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