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CRONIC CLUSTERS

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#1 Thu, 20/11/2014 - 17:13
JANEHAMMOND
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Last seen: 5 years 6 months ago
Joined: 04/10/2014 - 20:34

CRONIC CLUSTERS

I would love to hear from you if you have cronic clusters, I have between 2 and 8 attacks a day and find it really hard to cope with those who describe it as having bad migraines

Fri, 21/11/2014 - 07:38
Mike
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Last seen: 8 years 11 months ago
Joined: 21/03/2012 - 12:43

Jane many of us are chronic sufferers, personally after many, many years of being chronic you learn to live with it. Please call the help line as Liz has suggested on another thread.

 

Mike

 
 
 
Chairman OUCH UK

Mon, 08/12/2014 - 14:28
AnnK
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Last seen: 1 year 2 months ago
Joined: 26/02/2014 - 14:26

Hallo Jane

I have had chronic clusters for about 16 years now and have tried many many treatments. I also have chronic migraine.

Just finished a year long bout ofclusters with up to 6, 7 even 8 per day.

Very happy to chat with you  and answer any questions I can hep with.

At my worst moments I survive by reminding myself that even the worst pain  does stop eventually.

with all my best wishes

Ann

Mon, 08/12/2014 - 15:26
duetto
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Last seen: 7 years 11 months ago
Joined: 26/02/2014 - 14:54

I have had chronic clusters for years now and have tried many many treatments. I also have chronic migraine. Same here too,takes ages to adjust but eventually it becomes part of daily life, I know mornings are mostly ok. but late afternoons, evenings, are bad news.

Tue, 09/12/2014 - 08:59
Val
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Last seen: 1 day 3 hours ago
Joined: 21/03/2012 - 15:16

Hi Jane

I've been a chronic sufferer for 12 years and before that an episodic sufferer [undiagnosed] for 40 years.  Imigran and oxygen are my friends and I have an implant which has cut down the number of attacks I have, but I still get them and am still a chronic sufferer.  I work from home and try not to let CH rule my life, but its a tad difficult at times!

Val.

Mon, 15/12/2014 - 21:09
JANEHAMMOND
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Last seen: 5 years 6 months ago
Joined: 04/10/2014 - 20:34

Thank you everyone that replied, I have only just learnt how to read the replys, I do get by everyday, but every now and again I think that medical staff still have no clue.. I only have 1 appointment a year with the neuro unit, and today I was there for exactly 3.5 minutes, where she told me that as I was still using imigram she was going to stop my oxygen and give me 6 months to stop the injections as they can cause a stroke, these two work for me and I can not get them to understand that the 2 together get me through each day

Mon, 15/12/2014 - 23:46
ElizabethK
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Last seen: 1 day 5 hours ago
Joined: 26/02/2014 - 14:26

Jane, your Neuro obviously knows very little if not nothing about CH. Please phone the Helpline 01646 651979 and you will be able to get some great advice, in particular how to see a Neuro who specialises in CH!

take care

Liz

Tue, 16/12/2014 - 01:57 (Reply to #7)
JANEHAMMOND
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Last seen: 5 years 6 months ago
Joined: 04/10/2014 - 20:34

Thank you Liz, I will ring in the morning xx

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