Post by LeLimey on Jan 19th, 2009 at 7:49am
Hello Rachel,
You say you're on steroids and that concerns me greatly especially at your age. They can do a lot of damage to your skeleton etc How long have they given you on them and is it a repeat prescription if you need more? one week of steroids is how I'm reading it but I want to be sure and not just "think"
I have a small son with CH too so I know how tough it is, I'm both a sufferer and a mum of a sufferer so I'm in a good position to talk to both you and your parents (who I hope you will get to come along and read here also!)
From reading - it sounds like your attacks last approx tem minutes or so? Is that right?
I know I sound like a nosey old bat but I DO have reasons for asking, CH is one of a group of headaches called TACS - Trigeminal Autonomic Cephalagia
(sounds much better than CH doesn't it?!)
There are a couple of variants on a theme that respond to different medication and it can be quite hard to tell them apart. One that typically has shorter intense periods is PH or Paroxysmal Hemicrania. The pain is the same, the symptoms are pretty much the same, the main difference is duration of attacks. The good news is there is a treatment for them which is highly effective, works for just about everyone with PH and starts to work within a week to ten days so doesn't have the huge build up that other CH drugs have. You could try it to see how it helps whether you have CH or PH as it's commonly used to help diagnose which is which anyway. The med is called Indometacin and I definitely would like to talk to your parents about this with you too of course. I think its very important you are all involved in your treatment and it's wonderful to see you taking ownership of it!
On another note, PH is commonly overlooked in diagnosis as it's rarer than CH. A friend here refers to them as "Posh Headaches" and Common Headaches" because she has PH and I have CH (and she's mean!!)
There is a lot of info here to absorb and talk about for you, please come back with any questions or comments you may have, we'll be delighted to help.
I'm also happy to email or to telephone if that helps. I know that sounds very disturbing when some nutjob off the internet offers to call but you can check me out! My name is Helen Williams and I am the Vice President of OUCH, The Organisation for the Understanding of Cluster Headaches.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or 
END PRINTPAGE
I really would love to see your parents come here for help and support too - I know only too well how hard this is on them. It crucifies me seeing my baby suffer, it's a million times worse than getting hit myself
Take care of you, looking forward to hearing more from you
Helen
You say you're on steroids and that concerns me greatly especially at your age. They can do a lot of damage to your skeleton etc How long have they given you on them and is it a repeat prescription if you need more? one week of steroids is how I'm reading it but I want to be sure and not just "think"
I have a small son with CH too so I know how tough it is, I'm both a sufferer and a mum of a sufferer so I'm in a good position to talk to both you and your parents (who I hope you will get to come along and read here also!)
From reading - it sounds like your attacks last approx tem minutes or so? Is that right?
I know I sound like a nosey old bat but I DO have reasons for asking, CH is one of a group of headaches called TACS - Trigeminal Autonomic Cephalagia
(sounds much better than CH doesn't it?!)
There are a couple of variants on a theme that respond to different medication and it can be quite hard to tell them apart. One that typically has shorter intense periods is PH or Paroxysmal Hemicrania. The pain is the same, the symptoms are pretty much the same, the main difference is duration of attacks. The good news is there is a treatment for them which is highly effective, works for just about everyone with PH and starts to work within a week to ten days so doesn't have the huge build up that other CH drugs have. You could try it to see how it helps whether you have CH or PH as it's commonly used to help diagnose which is which anyway. The med is called Indometacin and I definitely would like to talk to your parents about this with you too of course. I think its very important you are all involved in your treatment and it's wonderful to see you taking ownership of it!
On another note, PH is commonly overlooked in diagnosis as it's rarer than CH. A friend here refers to them as "Posh Headaches" and Common Headaches" because she has PH and I have CH (and she's mean!!)
There is a lot of info here to absorb and talk about for you, please come back with any questions or comments you may have, we'll be delighted to help.
I'm also happy to email or to telephone if that helps. I know that sounds very disturbing when some nutjob off the internet offers to call but you can check me out! My name is Helen Williams and I am the Vice President of OUCH, The Organisation for the Understanding of Cluster Headaches.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to
or END PRINTPAGEI really would love to see your parents come here for help and support too - I know only too well how hard this is on them. It crucifies me seeing my baby suffer, it's a million times worse than getting hit myself
Take care of you, looking forward to hearing more from you
Helen