Hi folks, my name is Tim and I have has cluster headaches since 1997(Episodial).
I am not sure how I stumbled across this forum, but noticed that many of you are sympathetic to our condition and want to know more about it. So I decided to become a member here and share my story.
Before I continue, if you want to see testamonies and read more about this condition, go to
www.clusterheadaches.com. My name there is TimInTexas. We are a world wide support group for fellow sufferers. Here is my description of my cluster headaches.
There are two pains going on during an attack: deep throbbing pain and a searing sharp pain just behind your eye. The attacks are sudden, however, we feel them coming on. A tingling sensation very much like a sneeze coming on. This is when we prepare ourselves for the immenient pain to come.
The tingling pain starts at the back of our head(head aches are always on one side) and slowly embeds itself behind our eye. As it makes it's way behind our eye, the pain increases very quickly. (This is the sharp and worst part of the attack) To put this pain into perspective.....it's much like getting a lot of water up your nose.....but a thousand times worse and doesn't let up so fast. This pain behind your eye is the first to set in and the last to leave.
Once the pain settles in behind your eye, it begins to get hot and begins to increase to a level that you can't imagine. At this point, the second part of the head ache comes......the pounding.
Many of you, I'm sure, have had a pounding migraine before. This much like that, but only horribly worse, because Migraines seem to come in waves and let off at times. Not Clusters. The pain only continues to grow. Most clusters I've had stay within 7-8 on the klp scale *see clusterheadaches.com. However, about one in five hit 9 or 10.
The pain becomes unbearable within 10 minutes and pain management at this point is an illusion. You are usually in some kind of fetal position, hand covering eye, other hand over head and rocking. Many people scream and hit their heads. This is just not an option for me. As I have a 5 year old son who I don't want to see me like this. I hide in my dark closet and try to remain as quiet as possibly. This is my sanctuary. I have it set up with a stool and pillow to scream in (when they reach that point).
During an attack, you will sweat like a pregnant nun. It will feel like you are so hot, that it's superhuman.
An attack will sustain its peak (intensitity always varies) for about 45 minutes to up to 2 hours. I know when relief is coming when I begin to feel my body start to cool down.
Once the pain is at a reasonable level, I get out of my sanctuary and begin to cry out of relief. It's finally over!
Or so you think. Cluster Headaches can hit you over and over again for hours. Each time leaving you exhausted.
Last night I got hit with 8 of then starting at 8:21pm and ending at 7:49ish Am.
The true heroes are our supporters who have to deal with us in this condition. For me it's my amazing fiancée and son. I try not to let my son see me like that, but he does have to be quiet and leave me alone.
There is nothing anyone can do to help ease the pain of the suffering, and it's hard for loved ones to understand. For me, my fiancée and I have devised a routine.
Once I retire to my sanctuary: don't talk to me, don't touch me, stay out of the closet PERIOD, don't turn on the light, and be as quiet as possible.
This may seem harsh and demanding, but we had to develop this routine the hard way.
I honestly don't know how or why this woman lives with me. She is my hero!
I hope this helped you guys and gals better understand our condition and thank you for showing a real concern for us.
If you have any questions for me, feel free to ask. Until then.....happy gaming!
