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Showing all posts by "Erin"

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Posted in Untitled on 06 Mar, 2011 - 8:45 pm

Thanks for that Ben, I think I am definitely going to go see my doctor about getting a sleep disorder test done.


Posted in Untitled on 27 Feb, 2011 - 8:49 pm

Hi all,

I was just wondering, have any CH sufferers been diagnosed with sleep apnea? I have been doing a bit of research recently and found some mentions of it being related on some Internet sites.

I'm particularly interested as my mum has recently been diagnosed with sleep apnea, and I have a feeling I may have it as well, as I quite often wake up choking. My grandfather also had sleep apnea.

Has anyone found that with treating their sleep apnea, their CH seemed to ease?

Also, has anyone found any links with CH and sleep walking? I was a chronic sleep walker when I was younger, but I don't believe I've done it for some time. Wondering if there might be a link there.

Thanks icon


Posted in Untitled on 27 Feb, 2011 - 8:30 pm

After reading this topic I thought I would give the aspirin a shot and I have to say I'm pleasantly surprised at how effective it has been. I do have to take it as soon as I feel it coming on - if I wake up during an attack it's too late. But as long as I catch it quickly enough I feel very little pain.

I'll definitely stick with it while it works.


Posted in Untitled on 03 Nov, 2010 - 6:18 pm

Hi all,

My name is Erin, I'm 25 and have just recently (2 months) been diagnosed with CH.

My diagnosis process wasn't smooth sailing, I attended my GP after having some extremely painful headaches behind my left eye which frankly scared the pants off me! The GP diagnosed it as sinus pain, which I frankly thought was wrong (I know my own body), but went off to the ENT anyway.

Subsequently, both the ENT and Optometrist (wanted to rule out as much as possible) have confirmed they believe I'm suffering from CH. The ENT was actually very helpful as her sister-in-law suffered from neurological problems and had investigated CH for her.

I have been prescribed amitriptyline (brand name Endep) which was a bit tough in the beginning but has seemed to curb the attacks. I have had a few isolated attacks in the past 6 weeks but nothing to the intencity of the original ones.

The main struggle I have had is trying to get people to understand what I'm going through, especially my partner's family, as his sister was in hospital for 2 weeks with meningitis last year, so nothing could ever compare apparently. And when I'm having an attack, walking into the room and turning all the lights on and asking me if I'm ok is not the most helpful thing to do!

I'm just hoping that when I eventually ween off the Endep (unfortunately I can't take it forever) they attacks don't come back!

Thanks for listening icon