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Topic: Hi, I'm Nienke, chronic clusterhead (Read 728 times) |
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Nienke
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xxx Nienke
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Hi, I'm Nienke, chronic clusterhead
« on: Aug 27th, 2007, 3:31pm » |
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Hi everyone! I'm Nienke and I'm brand new here!
I'll introduce myself ... I'm 21 years old, living in Voorschoten, Holland. I'm still living with my parents, sister (who is going to live on her own within a month or 2) and 2 cats.
12th of July I graduated for nurse.. Now I'm working in a nursery home with people who have dementia. In April 2008 I'll go to Ghana for 14 or 15 weeks to work and travel.
I'm a chronic a-typical clusterhead for 3 years now. Thinking back I had the first episode when I was 14, but we never saw it as cluster headache. February of 2004 I had another episode, but also never saw that as cluster headache. July of 2004 the episode was gone, and August 2004 it was back... Since then it's never been away....
I don't know if al the names are the same in Dutch as in English, but I tried Verapamil, Deseril, Amytriptilline and a lot of other things (I forget and can't look for it now).
I tried acupuncture, natural physician, magnetizing and 4 treatments with heat (trying to confuse the nerve near my nose and the nerve at my C1-vertebra).
The C1-treatment worked for about 2 weeks and then it stopped...
At the moment I'm using Propanolol in combination with Taurine.. It's doing something, but not enough...
At the moment I've one attack at nights and besides that I have chronic headache.
Picture is coming later, don't have one now, because I'm not at home
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Ray
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #1 on: Aug 27th, 2007, 3:53pm » |
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Hello Nienke, or Dag if you prefer!
I lived in Naarden for a year and I had clusters even then. The best specialist I found in Leiden at the university. The doctor's name was Michelle Ferrari. I believe he's still there as he still publishes papers.
I notice that you don't list Oxygen, zuurstof, as an abortive treatment. It has been a major help to many of us here.
Good luck (goed geluk) and welcome to the family,
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
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Bob_Johnson
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #2 on: Aug 27th, 2007, 4:17pm » |
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This article represents current thinking about good treatment in the U.S.
http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
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Bob Johnson
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Rosybabe
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #3 on: Aug 27th, 2007, 6:27pm » |
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Hello Nienke!
Welcome aboard!!
Sorry to hear you are having to endure the beast in chronic basis but I am glad you found your way here.
You are among family now and we understand your pain.
Give a try to O2 as an abortive, works for a lot of us and is pretty much side effect free.
and melatonin is very good against night hits..
Hoping you get lots of Pain Free days and nights!
Rosy.
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 Believing is just the beginning!
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sandie99
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #4 on: Aug 28th, 2007, 12:40pm » |
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Nienke, welcome! 
I'm so sorry that you have ch, but I'm glad that you found your way here.
PainFree days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Nienke
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xxx Nienke
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #5 on: Aug 29th, 2007, 3:32pm » |
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Hi everyone!
Thanks for the welcome!
I forgor to say, I tried Oxygen, in the beginning it did work a little bit.. But during the attacks, the Oxygen stopped doing it's job 
@Ray, Michelle Ferrari was also my neurologist (do I say it right??  )... The only thing he wanted to try else was Lithium... But because I'm 21 and the risks are high I wanted to try other treatments.
Lithium is here in Holland my very last option...
If there's nothing else left for me here in Holland, I'll go to America.
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Ray
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #6 on: Aug 29th, 2007, 6:07pm » |
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Dear Nienke,
I sent you an e-mail. Good luck!
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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Batch
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Re: Hi, I'm Nienke, chronic clusterheadWe
« Reply #7 on: Aug 29th, 2007, 7:58pm » |
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Hey Nienke,
Welcome aboard. You've come to the right place. Lots of experienced cluster headache sufferers and supporters are here and they are most willing to offer assistance and sound advice.
I'm Pete Batcheller, a.k.a. "Batch." I'm also your friendly O2 Pusher. Please take a look at the following URL for the OUCH O2 User's Support Team.
http://www.ouch-us.org/medications/oxygen/o2info.shtml
We have also developed a Supplemental User's Guide for using 100% Oxygen to abort Cluster headaches. You'll find the page containing the the download for the User's guide under the O2 Information menu at the following URL:
http://www.ouch-us.org/medications/oxygen/o2links.htm
We've done a lot of research and collected some interesting data on cluster headache sufferers who claim O2 is not effective in aborting their headaches. The two most common reasons they were unable to successfully abort their cluster headache attacks was either too low an O2 flow rate and/or a malfunctioning nonrebreather mask.
The User's Guide discusses these problems in detail.
We are also developing a new High Flow Rate O2 Therapy for Cluster Headaches. I'll send you a copy via email.
Please take care and keep trying to find a good preventative.
Batch
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barry_sword
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #8 on: Sep 3rd, 2007, 9:12am » |
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Hi Nienke, welcome to the family. Sorry I missed your post on the 27th but better late than never, right?
Listen to Batch re: the o2. This stuff works wonders for me. Catch it at the first twinge (sign) of a oncoming attack.
I am on 480mg of Verapamil and enjoying life while in my 11th month of this cycle.
My wife Angie's family is from Holland. Her maiden name is van Ekelenburg. You two have something in common, she will contact you later.
Now read ,read, and read some more. Lots to learn here.
You are not alone anymore.
Barry
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Nienke
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xxx Nienke
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #9 on: Oct 20th, 2007, 9:05am » |
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Hi!
Sorry I've been away a while!
There has happend a lot the last weeks!!!
On the 3th week op September I heard that they were going to dismiss me!
So.. At the 3th week op September I was at home... Till last week, because I've got a new job at the hospital here in the surroundings!
And at wich department Neurology!! At that hospital there's a docter who is specialised at cluster headaches!
@ Barry, funny that your wife's coming from Holland!!
I'm curious about what we have in common !!
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Rosybabe
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #10 on: Oct 20th, 2007, 11:17am » |
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Nienke that is wonderful!!! you can have the Doc at your fingertips!
How is your head behaving?
Hugs
Rosy.
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| « Last Edit: Oct 20th, 2007, 11:17am by Rosybabe » |
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Nienke
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xxx Nienke
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #11 on: Oct 20th, 2007, 2:15pm » |
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Hi Rosy!
Since I'm dismissed my head is better!
I worked there since July and around August they said to me that a part of the team would rather see me go then stay (not with that words, but he was saying the same thing only nicer).
My head was reaction very heavy on that, so the attacks came more and more in the mornings, so I couldn't work!
Now I'm gone, my head is better!
Only today it's real bad, after the attack this morning my head still hurts like hell!! 
So, I'm going back to bed again!
I'm VERY happy with my new job by the way!!! 
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Guiseppi
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #12 on: Oct 21st, 2007, 4:12pm » |
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Welcome to the board! I'm 47 years old, episodic, I use lithium as my primary prevent when on cycle. If nothing else works for you it's certainly worth a shot. Very few side effects for me and extremely effective. Just requires a couple of blood draws when you start and occasional blood draws while you're using it to monitor your blood levels and keep an eye on your thyroid.
And do read Batch's ifo on oxygen. Many who found oxygen didn't work, found success when they changed HOW they used it.
Good luck, hoping you find relief soon.
Guiseppi
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MR_FLOOR
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #13 on: Oct 22nd, 2007, 2:28pm » |
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Hi Nienke,
Totally sucks that you have this condition,but once you doc comes up with the rite combination of meds that works for you, you can learn to live with it. I am also chronic for 28 years mine started the same age as yours,the ripe old age of 14. I noticed that you mentioned Taurine in one of your combos,have you ever tried any energy drinks as abortive's,Red Bull,Monster ect.......anything with the combination of Caffeine and Taurine in it,at the first hint of being hit slam one down as fast as you can,try 2 if one don't work,I know it sound hokey but it works ,at least for me it does,can't hurt to try. Good Luck and like Barry said, lots of reading Knowledge is power.
Dave
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lorac
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Re: Hi, I'm Nienke, chronic clusterhead
« Reply #14 on: Oct 23rd, 2007, 8:20pm » |
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Nienke..... good luck to you with the new job...
KEEP GOOD THOUGHTS! You are not alone anymore.
pf wishes to you LORAC
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