New- Hello
New- Hello
Hey, hope this is ok to write.
I have always gone with the thoughts of dealing with CCH by myself and not really discussing how I feel in great deal as hate to be a burden to people but come to the conclusion recently that speaking to others who have CH would be amazing as it has taken its tole on many areas of my life.
I have Chronic Cluster headaches have done for around 6years but it was only this October that a diagnoses was finally made. As it started when I was 19 so now nearly 25 so glad I know what has been so present in my life causing so many problems. It's only really past 2 years it's really affecting all areas of my life saying this, if I may ask has anyone found it helpful using forums etc? Each day it's becoming more of a struggle and not knowing anyone else who has the same, haven't really wanted to talk to much about it with friends as they care but don't fully understand.
hope you are all doing well, best wishes
Sophie
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Hey sophie
I've suffered 6 years as well and new here as well,but I can say yes it is god to chat to people who suffer as you do, I find it good to talk to people who understand the pain and stress that it causes, most people don't understand and just see them as a headache, people who suffer CCH know different and can offer different ways to try and cope that you may not have thought off.
When I have an attack, I go really quite and my tolerance levels drop through the floor so my way of coping is my dog, I sit and stroke her or brush her, it's what keeps me calm and gives me something to focus on rather than the attack itself
If the attack is really bad it's off to bed for me I try and sleep it off, but my attacks are now getting me in my sleep
Best thing to do is see if anything sets an attack off, one of mine is nail polish remover so I've banned it in the house (daughter and mrs hates me for it lol)
Just remember your not alone
Jas
Hey Jas,
I've never felt the need or really knew what to say to go on forums and supports groups but just speaking to few people makes you feel you aren't the only one going through the same things so appreciate your message back.
i can imagine they aren't best pleased with that ban luckily I'm alright with that which in so happy about haha!
I can't wear certain types of perfume or be around them also a huge trigger is lack of sleep.
By the sounds of it I cope quiet similar to yourself, I try and carry on as long as possible then when it gets too bad I go to bed with medication till it eases off. My tolarance levels drop also I feel sorry for my fiancé so I take myself off when I get to that point but I have 2 cats who I go to. Amazing isn't it how animals can help.
more and more I am being woken from my sleep around 2am which is draining.
if you don't mind me asking are you Chronic? I am and have a continuous headache 24/7, I can sort of manage the cluster attacks but have found no relief for the constant pain even from nerve blocks. is this something you also have being CCH?
sophie
Sophie
Hey sophie
Yes mine is chronic I get maybe 1 day a week where I get some form of freedom from an attack, but I can still feel it lingering in the background.
I am the same I thought that I was the only one who suffered and had to deal with it, I talk to my other half about it but it's nice to chat with people who actually have it and can understand what your going through it almost takes some of the weight of your shoulders knowing your not alone with the problem.
The other thing that helps, I get my mrs to give me a head massage as with the others it doesnt always work but it makes my mrs feel like she is involved and helping which it does most of the time lo
I am forced to wear sus glasses pritty much all of the time as light is huge trigger for me , I've got 3 pairs for different light situations so that might be something worth trying ....
as I'm chronic I have yet to find anything that stops the background headache pain, I've just sort of learnt to deal with it, I try to keep myself busy so that I'm not thinking about it, as I find if I think about it, it gets worse if that makes sence
Jas