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What Happen When you come to the end of the Road ?

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#1 Mon, 17/03/2014 - 15:07
Brian C
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Joined: 26/02/2014 - 14:35

What Happen When you come to the end of the Road ?

I have asked the above question hoping for answer, I have read the internet, had GNOB & multi blocks, at my last count I had tried 58 various tablet and postions. The last DHE lasted about a week when I seen my nerologist he told me quite simply there was nothing more he could do but give me DHEs. The only book I found useful was ........ P, which I have read over and over that has got me thinking about my life in general in another way will I last another 10/15 years or can I find another way out ?. There is many ways you can think about the beast, or you can sleep.

Mon, 17/03/2014 - 15:39
duetto
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Joined: 26/02/2014 - 14:54

Brian I am too at the end of the meds only one that worked was merthyserglide and that was taken of the market not long after i started on it.

which leaves ONSI or DBS not keen on them, but at bad times I often have 2nd thoughts, yesterday was my first free cluster day of 2014 but was intensly restless all day so only just escaped a cluster.

We have just got to learn to cope, no matter how bad you are or feel there are always many others with medical conditions far worse than ours [eg look at the poor fellow this week on the news lost both legs, an arm and lips to a bad infection caught via a cold]

 

Mon, 17/03/2014 - 16:31
ElizabethK
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Joined: 26/02/2014 - 14:26

Hi Brian,

Sorry to hear about what you are going through, please phone the Helpline 01646 651979 and you will be able to speak to a fellow sufferer who can offer some good advice, but can also understand.  Hang in there, there maybe new stuff you have not tried, please speak to the Helpline.

Take care

Liz

Mon, 17/03/2014 - 19:55 (Reply to #3)
Brian C
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Joined: 26/02/2014 - 14:35

Thanks duetto it's just when you hear your Dr telling you there is no more he can do for you, it's like somebody went into you and pulled a big part of your life out. Thanks again

 

PS

  O.N.S.I. 

DOESN'T WORK IT HAS BEEN BAND IN 8 STATES THE LAST AMERICAN POST I READ AND THERE IS MORE TO COME THAT WAS 2YRS AGO. THEY TOOK MINE OUT AFTER 8MONTHS BECAUSE IT INCREAST MY HEADACHES.

 

 

Tue, 18/03/2014 - 07:21
duetto
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Joined: 26/02/2014 - 14:54

brain thanks for the feedback on ONSI I dread operations and read so many mixed views on both ops it scares me off asking for them.

I know exactly how you feel they get me so down at times too.

Tue, 18/03/2014 - 07:46
Mike
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Joined: 21/03/2012 - 12:43

Brian, I do know how you have suffered over the last few years. I know how old you are so take some comfort in the fact that in all probability the attacks will finish, just cant say when. There are a few treatments you havent had. More information on one of them will come out at Shrewsbury.

 
 
 
Chairman OUCH UK

Tue, 18/03/2014 - 09:29
tangerinearmy
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Joined: 26/02/2014 - 14:34

brian

 

i presume that you have heard of the forum clusterbusting

Tue, 18/03/2014 - 11:27
Dorothy
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Brian - I am late to this thread and I'm so sorry to hear how much you are suffering.  I do hope you ring the helpline - you never know, there just might be something they can suggest that you haven't yet tried and having a chat to someone who completely understands can't hurt.  All the best to you.

Dorothy x

 

Sun, 23/03/2014 - 07:50 (Reply to #8)
CatherineM
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Last seen: 5 years 3 months ago
Joined: 26/02/2014 - 15:05

Brian I am so sorry you are feeling like this atthe moment I can remember many times in the middle of the night with the oxygen cylinder going full pelt as was my cluster and i could have thrown it and myself out the window but you don't I have tried every med going and I am very lucky i know that I have been able to try the gamma core to some success and the clusters have abated with perhaps my age who knows I do hope fingers crossed and everything else that something works for you so so soon Cathy

Sun, 23/03/2014 - 23:16
Brian C
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Last seen: 2 weeks 4 days ago
Joined: 26/02/2014 - 14:35

Thanks to Everyone for there support and help .

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