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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

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03 Nov, 2010 - 6:31 pm

Hi Erin and welcome to the motley crew of the CH site!
Pleased that you have found us and hope that we can help you as you work through your illness.
First of all--be aware--you will always come across people who will try to do the "one better that you" so learn to take it in your stride--or in my speak--let it go through to the keeper. Not worthy of worrying about.
Just thank them for their concern and explain that for you it is better if the light is off--or whatever it is that you like. Remember they are not mind readers and are perhaps just trying to help.
I invite you to have a good read of all the information on the left, check out the links and in particular perhaps the "what its like" and the "supporters tips" these may help your family and friends get a better idea of what you are going through and how to help you a bit.
Be assured of one thing--you are definitely NOT on your own.
Keep coming back to this site and become proactive in reading and responding to others who are in a similar position to your own.
Cheers
Heather

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