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Kudos to all here ! (Read 1623 times)
Raagoholic
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Kudos to all here !
May 1st, 2016 at 10:50am
 
Hi everyone,

First of all a big shout out for the people behind this place and for all the contributers!

Well my name is Zakariya, living/studying in Germany but I come originally from kingdom far far away, so called Oman.
I've been suffering from CH since almost 3 years and Im so glad that I found this place. I thought I had a brain tumor or Aneurysm and that im gonna die soon  Shocked, untill I was diagonosed with CH (also ex Epileptic) and found out about all the other Clusterheads.

I wish no one this pain but fact is, its somehow comforting to just know there are others who exactly knows how you feel.
Its just recently that I undrestood my condition. My cycles usually show up in Spring (im in the end of one),and late summer to Autumn.
Last Year I suffered the hardest attacks, while I was visiting my family back home and sadley my mom had to see me in my worst condition, that was a kip 9-10 in my books. Even after the attacks the mild pain lasted till the next attack.

I have tried many many many things but very rarely that I seeked medication, at the beginning of the attack my epilepsie prescribed anti dep.(Valproin) had aborted few attacks, after that never again. It was going like that, anything new I tried worked fine in the first couple of times and then not anymore.

I never tried Triptan or Imitrex or any of usuall prescriptions for migrain & headaches, I was afraid that it will be useless after two uses and the pain will just become worse and worse.

Well now Im planning to start with the O2 Therapy. As I was reading through the Oxygen threads Ive decided to get a Cylinder for home and a portable one. One's that could get a flowrate of at least 10-15 LPM. Any tips about suppliers or anything related in Germany ?


Last but not least, I want to share this simple illustration with you guys.
**Actually I cant embed links with < 10 Posts   Undecided **
i(dot)imgur(dot)com/TWTyzPk.jpg?1


Once Again Thank you all !   Cool
Zak
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MDR
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Elysburg Pa.
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Re: Kudos to all here !
Reply #1 - May 1st, 2016 at 11:41am
 
Please read up on this( 123 Days PF And I Think I know Why its in the medication link you will find it very interesting a lot of people are on this.

Mark
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Bob Johnson
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"Only the educated are
free." -Epictetus


Posts: 5965
Kennett Square, PA (USA)
Gender: male
Re: Kudos to all here !
Reply #2 - May 1st, 2016 at 1:23pm
 
It's very important to be working with a doctor who has good experience and training with Cluster.

Forsome, it's a strange disorder with a medication working well for a time and then stopping being effective. No altenative to starting to use some other med but, fortunately, you and he doc do have some choices. If this occurs with you, it's not your fault.

Oxygen is effecive but with a short effective life. In a situaton where you are moving about (work, school, etc.) the bried life and carrying the equipment can be a burden. Clearlly, a pill or injection resolves that issue.

Print the file below and share with you doctor. This will give you some choices and rates effectiveness of individual medications.
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (96 KB | 16 )

Bob Johnson
 
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Peter510
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don't give in.


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Wexford. Ireland
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Re: Kudos to all here !
Reply #3 - May 1st, 2016 at 1:28pm
 
Welcome to CH.com Zak.

Mark is spot on. Read the thread, it's a detailed lesson on the Vitamin D3 programme that a lot of us are getting huge benefits from.

There's a lot of reading, but it is worth the effort. Ask any questions you need to. Post anytime.

Peter.
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You don't stop laughing because you grow old....You grow old because you stop laughing.
 
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Raagoholic
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Re: Kudos to all here !
Reply #4 - May 1st, 2016 at 2:12pm
 
Thanks alot that would help for sure.
Ive read alot and im still going to keep on.
This beast wont break me down  Smiley
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Mike NZ
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Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Kudos to all here !
Reply #5 - May 2nd, 2016 at 1:40am
 
Hi and welcome

Raagoholic wrote on May 1st, 2016 at 10:50am:
Last but not least, I want to share this simple illustration with you guys.
**Actually I cant embed links with < 10 Posts   Undecided **
i(dot)imgur(dot)com/TWTyzPk.jpg?1


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

Anyone with CH will instantly associate with that illustration.

I agree with Bob's suggestion on you working with a headache specialist to find out what will work for you to avoid as many CHs as you can and to kill off the rest quickly.

For oxygen, I'd read up our info page - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register.
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