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A bit puzzled...

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#1 Wed, 31/10/2018 - 00:34
scott.k
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Last seen: 1 month 1 week ago
Joined: 31/10/2018 - 00:05

A bit puzzled...

Hi. I’ve suffered from episodic CH since 2005 and while I admit that I’ve read these pages a lot for support I’ve never posted before. Perhaps that has been selfish, but I guess we all have our own way of dealing with this misery. 

Anyway, I have a question. Every episode has been longer and frankly worse than the prior one and honestly I’m not sure how I’ve made it through some days (nights really). Anyway, my last cluster was different to anything I’ve had previously and with the exception of a few really brutal attacks which scared the life out of my new colleagues (and the predictable loss of sleep) the pain was manageable (let’s call the average a kip 5). 2 weeks later, the cluster was over  Way less pain than normal and 2-3 weeks shorter than my normal cluster. But with all of the other symptoms - my left eye was half closed, weeping and bloodshot, nostril blocked etc etc  

Fast forward to the weekend just gone and I woke up on Sunday feeling fine.  Quiet Saturday night with the family, no issues. 45 minutes after waking up (again this is not normal for me as that would typically be my best time of day during a cluster) and my old friend started digging into my eye and trying to rip the side of my face off. Then it stopped. Since then I’ve had a fairly consistent niggle and a series of attacks, but none of them have gone past a 3, perhaps a 4 this evening.

Anyway, after this long winded ramble I was just wondering if anyone else has had the same thing? Obviously I’m hoping that I’m coming to the end of the misery (or as it stands right not the terrifying threat of if) but it seems odd. Any thoughts/help would be great  

On a more personal level, while my clusters are brief (up to 5 weeks) and not that frequent (worst case, annually) you all give me hope and strength. I know what this does to me and Your unknowing support has probably kept me here  

Thanks

Scott

 

Scott

Wed, 31/10/2018 - 09:51
Val
Online
Last seen: 8 min 40 sec ago
Joined: 21/03/2012 - 15:16

Hello Scott

CH is the most unpredictable disease, closest thing you will get to a designer disease because no two CHers suffer in exactly the same way, the only common factor is the appalling pain.  There may be others who have had similar experiences to yours and they will no doubt chime in.  I would say though that the rogue attack you had at the weekend sounded especially fierce and I would suggest you talk to your headache neuro about it.  I know you have a relatively short cycle, but keep a headache diary, that helps consultants to see if there is a pattern to your attacks and there may be a short-acting treatment available to  help.  You don't say what abortives you have?

Val

Sat, 03/11/2018 - 22:28 (Reply to #2)
scott.k
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Last seen: 1 month 1 week ago
Joined: 31/10/2018 - 00:05

Thanks Val. I guess the same as many on the abortive - imigran injections and oxygen  

I know I’m lucky with my clusters being short, so I’m usually given a combination of steroids and pizotifen. Takes a while to kick in but tends to limit me to 2 attacks a day. The weight gain is astonishing but a price I’m willing to pay. 

I think you’re probably right about the neuro. Will give him a call. 

Scott

Scott

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