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JD66

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Manchester, UK
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Thirty years of hurt.
Aug 11^th, 2016 at 11:42am

[pre][/pre]First of all thank you to all members, some of the things i have read on this forum have given me strength join this forum and write this post. My name is John and I am 50 years old this year I was first diagnosed with CH at the age of 20. In the early years here in the UK there was no meds at all, I went for O2 tests in the mid 90,s only to have it taken away again because of legal red tape. Things changed in 2002 when i went to see the specialist again and he was a new guy. since then I have been on high flow O2 and Imigran injections. Throughout all this I have worked and brought up a family.
And that was the good bit!
Now its all gone to sh*t
MY CH HAS GONE CHRONIC, My lovely wife dosent know what to do with me, All the kids have left home, Work have retired me, I am taking that much verapamil i have to have an ECG every week, the list goes on and on, I just dont think i can take anymore. I have no life and I am ruining what is left of my Wifes, last year I was pain free for about 3 months. I just think no one can help, I have been on high doses of verapamil before and the next step after lithium is invasive electronic brain stimulation , the neurologist said there is another none invasive option called Gammacore, but if it works it might be taken off you (reminded me of the O2 from the mid 90,s) well thats about it, 30 years, and I have spent nearly half of it crying, screaming, banging my head against a wall or trying to rip my eyeballs out. My 50th will be my last. Thank you for reading.
John

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Potter Ex Member	Re: Thirty years of hurt. Reply #1 - Aug 11^th, 2016 at 12:22pm Don't give up, Busting may give you back the life you had. Potter
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Peter510

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Don't give out... But
don't give in.

Posts: 966
Wexford. Ireland
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Re: Thirty years of hurt.
Reply #2 - Aug 11^th, 2016 at 3:34pm

JD,

From one Chronic in his 50's who retired early last year to another, there is light at the end of this long tunnel.

Read this and then come back with lots of questions. It's changed my life and that of 80% of those of us who gave tried it:

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

or

Also, I use gammaCore, which I buy myself. Why would it be taken from you??

Come on back, lots to talk about and work to do to give you your life back.

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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JD66

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Re: Thirty years of hurt.
Reply #3 - Aug 11^th, 2016 at 5:31pm

Hi, Gamma-core is not approved here in the UK, and is only available for trial. My main problem is facing what is left of my future, if it was not for my wife, who has been with me all the way from the beginning, I would not be here now. When I was younger and I had small children, I was a self employed Joiner/carpenter and when the CH got real bad I would think "I only need to live long enough to make sure the kids are OK" so that sort of kept me going. Over the last few years my situation has turned chronic, I have loosely got surgery planned next summer, the Wife and I have become more distant, House is empty, just no future really. I am a long way down the road with this CH thing, I just want to get to the end really. I have been ridiculed all my life by family and friends alike. more so by my parents, It is not really help with managing CH I am looking for, it is a reason to put in the effort.
thanks
John

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Potter

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Re: Thirty years of hurt.
Reply #4 - Aug 11^th, 2016 at 5:36pm

JD66 wrote on Aug 11^th, 2016 at 5:31pm:

Hi, Gamma-core is not approved here in the UK, and is only available for trial. My main problem is facing what is left of my future, if it was not for my wife, who has been with me all the way from the beginning, I would not be here now. When I was younger and I had small children, I was a self employed Joiner/carpenter and when the CH got real bad I would think "I only need to live long enough to make sure the kids are OK" so that sort of kept me going. Over the last few years my situation has turned chronic, I have loosely got surgery planned next summer, the Wife and I have become more distant, House is empty, just no future really. I am a long way down the road with this CH thing, I just want to get to the end really. I have been ridiculed all my life by family and friends alike. more so by my parents, It is not really help with managing CH I am looking for, it is a reason to put in the effort.
thanks
John

So if you don't want our help why are you here?

Potter

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JD66

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Re: Thirty years of hurt.
Reply #5 - Aug 11^th, 2016 at 6:20pm

Hi Potter, I dont need help with the CH, I need help in other ways, no one at my end is here for me, and I have tried to ask, believe me, It is hard to explain to somebody just the way i feel, I have never met nor spoke to another sufferer before, So when I talked to my Neurologist he suggested i joined a forum to interact with other sufferers. And I told him how I was feeling "bluntly" and my Wife was sat right there with me. So here I am

John

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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Thirty years of hurt. Reply #6 - Aug 11^th, 2016 at 6:21pm John, Sent you a PM. P.
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thierry

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Re: Thirty years of hurt.
Reply #7 - Aug 12^th, 2016 at 6:20am

Hi John,
I am sorry to hear your story.
As regards CH, there is a way that might help you.
Many of us here take a regimen of vitamin D3 and some co-factors (calcium, magnesium, fish oil, vit A, K2, zinc and boron).
It keeps us mainly pain free or 100% pain free. deficiency in magnesium and D3 can also agravate feeling down and lead to depression.
Myself and many others here are willing and will be glad to have the opportunity to help you, just like we have been helped.
On another note, reaching the age of 50 is no easy task and you've done it, well done. You had kids and kept a home together, well done. For some men, getting to that age can be a turning point, a time of questioning. For some men, a mid-life crisis.
Although it has not been talked about here -as far as i know-, have you heard of a world wide movement for men called "man kind project". It is present and active in England too. I am just back from a weekend in Bradford on Avon with a group of men who honour their being as men with all it encompasses. There is great personal searching and growth in it. You can find "man kind project uk" online.
I'm only accross the pond from you John and will be glad to answer your questions about CH, the D3 regimen or chat about anything you might want to.
Check your inbox for a private message.
All the best

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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Thirty years of hurt. Reply #8 - Aug 13^th, 2016 at 10:17pm Hi John If gammacore works for you, you can always jump on a ferry to Ireland and get some. Have you tried using vitamin D3? It has worked wonders for many, including those chronic. I've been CH pain free for several years with it, as have quite a few others. Keep talking to us and we'll do all we can to help.
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NSHensley

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Re: Thirty years of hurt.
Reply #9 - Aug 23^rd, 2016 at 2:21am

JD66...PLEASE don't give up hope. I went through 25 years of CH and heard that oftentimes they may disappear after age 50. I looked forward to that age in hopes that it was true. Well, I had a cycle at 50, 52...and 54 was my last cycle! No apparent reason, just stopped!! I used the high dose Verapamil during a cycle and O2 during a headache. At the time the O2 was like 10 ltrs/10 mins., but I understand you can even go higher now. All I'm saying is that for some blessed reason they stopped for me after 50, like I had read. Maybe that will happen for you, too. Try not to give up hope. {{hugs}}

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