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chronic CH (Read 993 times)
artscotland
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chronic CH
Jan 19th, 2010 at 9:07pm
 
I have had my CH for coming up to 3 yrs now, without any stop to the cycle. I supose I am posting this almost more of a pull yourself together message to me then anything else so if you do read this sorry for the dribble!

Most of the time I can cope I am lucky that 80% of the time I will only get 1 attack a night but as time goes on and different treatments are tried and gone it just gets to you. I am fed up with myself for being a grumpy git mind you I must thank my GP who by accident help keep me going as when I told him  was aware how grumpy I was with my partner he told me have I tried not being so grumpy pmsl wow medicial science moves at such a fast rate how do we absorve all this new info lol

But then maybe I find it so funny is I am aware how sad it is I am becoming such a shit because of this condition. I want to be mr strong but sometimes when you can see no end in sight it start to feel like prision.I know tommorrow it will all feel better but tonight waiting for the attack I am pissed off and having a bad night. I have a constant headache that never goes so  can always find an excuse har but its easy to use excuses its done to me to pull myself out of it.

so to conclude my dribble rant to myself

To the monster you may have won the daily battle but I will not let you win the real war this is my life not yours, I will not let you take over my life and be content with your part role you WILL play and I will take control not YOU!

easy to write words see if I can make myself do it now good plan if it works oh life so easy written down lol
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anthony g
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Re: chronic CH
Reply #1 - Jan 19th, 2010 at 9:15pm
 
i feel for u man! we are all here for u to say whatever u need and want to say! it really sucks and that for sure and feel what u need and know we are on board!!!
best
anthony
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Chad
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Re: chronic CH
Reply #2 - Jan 20th, 2010 at 7:01am
 
Artscotland, you maybe grumpy, but you have an incredible attitude and that counts more than anything.
Not letting the beast get the best of you is key.

Keep fighting and we're all here to listen and give advice.
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When the PAIN starts, I FIGHT back!

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Bob Johnson
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Re: chronic CH
Reply #3 - Jan 20th, 2010 at 8:42am
 
There are two, parallel, lines of action which need your attention:

1. Do you have access to headache specialists with deep training & experience?
        You may find it helpful to contact your support group and see whether its members have some advice to offer in finding doc and treatments:

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

2. Coping with any chronic medical problem demands attending to the emotional burdens and learning how to handle them. The OUCH group may be of help and I'd explore local options with your doctor.

(I have a lead on a new form of treatment for coping with the emotional burden of CH and will get back, here, ASAP, with information.)

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« Last Edit: Jan 20th, 2010 at 2:22pm by Bob Johnson »  

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artscotland
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Re: chronic CH
Reply #4 - Jan 20th, 2010 at 10:06am
 
Thank you for your messages and I know that this is one of the few places you can speak how you feel without stupid comments or questions about but its only a headache.

I do have a excellent nuro which I did first of all find via ouch (who are a great charity highly recomend them to anyone here  in the uk) My nuro has been working through lots of different treatments and is still trying now so I know I have good medicial support there. As I have just moved I am now having to work with a new GP who so far I have very little confidance with and I keep trying to direct him to ouch and the institute of nuro in London but not sure he will do either.

It would be intresting to hear about emotional burdens with CH so I will look for your posting.

Just good sometimes to rant on here and it great to have a site like this because I am not a touchy feely person and do not talk to people about how I realy feel but I find I can on here and not be made to feel a fool.

sorry for bad spelling very heavy head today so cant be bothered lol
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Batch
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Re: chronic CH
Reply #5 - Jan 20th, 2010 at 1:03pm
 
Has your neurologist started you on oxygen therapy?
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artscotland
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Re: chronic CH
Reply #6 - Jan 20th, 2010 at 1:20pm
 
yes high flow of course and 960mg verapmil sr and gon blocks gabapentin I have the full set lol
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Brew
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Re: chronic CH
Reply #7 - Jan 20th, 2010 at 1:57pm
 
artscotland wrote on Jan 20th, 2010 at 1:20pm:
yes high flow of course and 960mg verapmil sr and gon blocks gabapentin I have the full set lol

You might want to ask him to dump the SR for the immediate release form of verapamil. It's been proven to work better for us CH'ers.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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