Hi everyone,

Today the sun woke me up. What an amazing feeling that was after weeks of being awaken by the pain. To express my joy I have decided to finally make a post on this site. I have read a lot here but never did really post.

I started having cluster headaches when I was 6 years old. Yes, I was just a kid when I started having this headaches and nearing 23, all I know is a life with cluster headache. I do hope that one day we will find a "cure" for it, but until then...all I have to give is 17 years of experience.
As said, I started having my headaches when I was 6 years old. I grew up in a relatively poor family so we didn't have the resources for medical advice nor was it too urgent as initially (from 6 - 10) it came just a few times each year so we didn't really bother. It was right around my 10th birthday did we (me and my mom) noticed that the frequency in the headaches became higher. But anyways, when I was 12 I already had my regular clusters each year. Luckily for me, my country introduced free medicare for everyone. So I took the opportunity and visited my doctor. He sent me to a neurologist and after 3 visits to him, he concluded that it was cluster headache. Made scans, MRI, wires and stuff put on my head (I seriously thought I was in some Star Wars movie which at that time made me look cool ). But at that time I wasn't even sure what cluster headache was. The first impression I got of how terrible Cluster Headache really is (besides the excusiating pains I already had) was when my doctor got the results from my neurologist. He basically stood up, came over and gave me a hug.
After that time, I have visited loads of doctors, ranging from neurologist to alternative medicince and even those ugly woman with crystal balls   None of it worked really. I think that between my 12th and my 17th I took more medication than someone would take in a normal life span. Up to a point where I said enough is enough. None were helping and sooo many drugs as a teenager wouldn't be any good either.
In 2 months I will be turning 23. In all these years I have tried all the basic treatments. From the top of my head I can remember:
- Oxygen (never really worked )
- Zomig (thank god for medicare. That stuff is so expensive but didn't even help a single bit   )
- Maxalt (was actually helping at first. But then stopped working   )
- sandomigran (8 pills daily    didn't work shiat)
- some nasal spray (all leaked back out   )
- acupuncture (harsh needles!!! )
- some other medice that I cannot recall the name
- and lastly sumatriptan.

I remember that it was about 4 times a year at the peak of my cluster period I would be in such excrutiating pain that I needed to be rushed at the hospital. They would give me a sumatriptan injection and that did ease the pain. When I emigrated to The Netherlands I went through the basic procedures again and they gave me the same diagnosis. But in this case, they gave me sumatriptan injections that I could administer myself. It helped at first. But later I realized I got so many adverse reactions to it that I stopped taking those too. At this point in my life I deal with the headache mano a mano   I mean...after 17 years it would be more than obvious that I start taking control instead of it taking control over me. Needled to say, that is the reason I wanted to write this post. I am not a doctor but an everyday citizen who fights his way.

Before I go to the interesting stuff, I would like to mention one thing. Suicide...did it cross my mind? Yes and many times over. I can remember thinking horrible things to do to myself. But in the end, it came back to me and the respect I had for myself and others around me. I never really did anything stupid. But hey, when you are in pain, anything can happen.

Ok, so with 17 years of experience I will recap some of my personal opinion on do's and don't, dealing with the pain, those around someone with pains etc.


Signs:

Usually people say that they don't have any signs before the onset of the headache. The thing is, you need to get to know your body. Nothing just pops up and start occuring. There is always a series of events before something happens and it is the same with cluster. I noticed two things. When the headache is about to start my body suddenly starts warming up. I can feel the heat in my lower back and my neck and instinctively my hands goes to my neck and start holding it (weird creature that hand of mine   ). So when that happens I know for sure that I will be getting one of my clusters (again   ) I understand that for others the symptom might be different. But again, get to know your body and he (or she?) will tell you when the drama is about to start.

Symptoms
Well, the symptoms associated with my headaches are typical ones like red eye, one sided (right), droopy eyelids, runny nose, watering eyes, PAIN, sweating.
About the pain itself, it is located behind the eye and around the temple and in extreme case up to my upper jaw. It does extend to the back of my head and to my right shoulder. Nothing fancy about that. Just the typical pain that everyone feels...next!

Trigger:
This is the tricky part of this post I am making. It is one part of the two most important question.
I suffer from what is known as episodic clusters. I know that year in and year out the headaches are restricted to December - January - February and June - July - August with the other 6 months being pain free. Sometimes it does go a bit off scedule (like in 2007 it extended up to October was HELL) but usually it stays within those months (for everyone looking forward to Christmas...I AM NOT!).
Scientist don't really know what triggers it. But I discovered a few years ago what causes MY headaches. Basically it comes to this. Whenever I am in the months I said that I have my clusters, whatever that causes me distress is a trigger to a headache with January and July being the two months where I get the most triggers. it can be from a motocycle racing behind my house when I am watching Greys Anatomy or Desperate Housewives to me needing to wait too long for someone to show up and even people asking stupid questions (this is the most frequent one  ). Even when I am sleeping it can be caused by for example me forgetting to turn off my heating system before heading for bed or having to pee ( or poo  ) but not wanting to wake up to go do those stuff. When I was younger I used to have the headaches every single night around 3 am to 4 am. I am happy now that it only rarely wakes me up at night. Instead it wakes me up every morning   . Anyways, so for me it is not chocolate, caffeine or anything related (I even read cheese   ) It is simply caused by distress or anything that bothers me.

For those around people who have cluster:
I know how hard it must be for you to watch someone suffer from the pain and feeling helpless without being able to help. Well, you can help too! Coming from someone who is suffering from cluster I can tell you that I absolutely hate it when during my attacks someone start saying stuff like "don't you think that a tooth my be causing the problem?" and "I think the doctors have misdiagosed you" and "you want a paracetamol?" or "come drink this herbal tea. It is from china and it has written on it (in english) that it cures all diseases" (the last one usually makes me insult the one saying that ). The best thing that you can do to help someone with cluster headache is in my opinion to just go around by doing what you were just doing. Don't talk about the headache. Just go to the one who is in drama and just massage his or her back or run your fingers through his/her hair...make them feel comfortable. I will elaborate later on this part.

For patients and my "cure":
Before I write MY opinion on this I would like to stress on the fact that I am in NO position to give legal medical advice as I am not a doctor. What I am about to say is purely out of my own PERSONAL experience and I don't want to be held responsible for someone not following advice given to them by their doctos.
I was at home one day rocking back and forward in my chair having yet again another headache. It was excruciating as always..anyways. Suddenly I heard a LOUD BANG outside and bunch of noise (was like 4th of July). I directly ran outside to find one car turned upside down and the other just fully smashed. In that very instant, the headache was gone. Only after the ambulance came, took the guys to the hospital (one had bones popping out of his flesh (totally awesome)) and I came back inside did I realize something. And at that same moment I found the best solution to treat Cluster Headache. No >_> it does not involve smashing cars into each other -.-"!!
What I learned that day is that in a few seconds, my headache went from a full 8 on a scale from 0 to 10 to a full 0!! Basically all symptoms and pain gone in a matter of seconds. It was that moment that I realized how to deal with it. Point of the matter is this. When you think you are going to have a headache or you are in the early stages of the pain, you need to find something that TOTALLY takes away your concentration from the pain to that something. When I know that my headache is coming, I go on youtube and watch babies fall over or cats hunting dogs or gymnist falling from the bars (that one is funny to watch   ). Bottom line is this. When I know I am going to have a headache, I find something that can completely take away my attention from the headache to the other activity. If I can manage to do that, the headache will be gone in seconds. I;ve read on wikipedia that sexual activity (especially at the moment of orgasm) is a point where the pain dissapears. Scientist say stuff like "yes because testosterone levels are elvated" and stuff like that...all bogus to me . In my opinion, it is just that at the moment of orgasm your attention is fully on the orgasm that it takes away the concentration of the pain (dunno how that works though). I know cuz I do engage in those activities at times. Sometimes even my right hand get's a good excersise if you know what I mean   . Top sum up the activities I do (just as examples):
- youtube
- porn  
- intercourse  
- gossip  
- thinking heavily about life issues(war, peace, religion, culture)
- ingage in discussion with someone else about these issues (that is where someone else comes in handy)  

These are just a few examples of things I do to take my attention away. That is for me the best thing to do before I get a full blown headache.
One thing though. If I am already in a full blown headache there is little that I can do. In this case I resort to hot showers (letting the stream fall un my neck), massasing my shoulders holding my head, walking around and just hold off the pain. I don't even think about sex, because with that pain I don't think I can even get Mr. President to wake up   Dam thing is is sleeping like a bat. Sometimes I do make an effort to watch funny vids or anything related. But it rarely works during the pain. This usually happens when I wake up at night with the pain or in the mornings or when I am stubborn enough to ignore the symptoms.

Moral of this post is that if you want something done, you need to do it for yourself. Take control of you life instead of letting cluster take control over it for you. Parents of children with clusters, be patient. Don't be angry if they scream at you or insult you. They are in pain. My last advice is again "Take control of your life, take control of your clusters"

Wonderfully written but says nothing.  Try turning the volume up on the oxygen so it gets your attention.

                Kinder gentler Potter

I am wondering if adrenaline or stimulation is a big part of what you describe.  I believe that if there was a major (noisy) car collision outside my window, my attention would be focused - while the adrenaline was pumping into my bloodstream.

Intense exercise exercise can often abort a cluster headache.

Also, Charlie here routinely posts a method he got from some doc to change blood flow using concentration, and that can help some people.

I am all for non-drug techniques that can help, but I think there is a real physical dimension as well, and it is a mistake to ignore that.

Look Mom no hands.... HeHe.. Coach Bill

If your solution works for you, I'm glad for you.

I wish such an approach were realistic for most people. There are a lot of folks that have found their answers to, as you say, "Take control of you life instead of letting cluster take control over it for you." Many of these answers that others have found have broad applications to sizable percentages of sufferers of CH.

At 23, I do understand confidence in one's self is a good thing. However, in a nuanced setting such as an internet discussion board dealing with an ailment that many describe as "the worst pain known", you may want to rethink the way you characterized your solution.

You tend to relate your ability to think your way out of a cluster headache as a special gift - that due to your incredible experience with these things anyone can possess.

Most of us have had similar experiences where something occurs around us and a clusterheadache miraculously seems to subside - or the opposite, something wonderful is going on in our lives only to be marred by the sudden hints of an unwelcome visitor.

Personally, as my moniker even cynically states, I don't believe you can think your way out of a clusterheadache. If watching porn or youtube clips did it buddy, some of the folks on this site would never come back to this site..... but they do.

Scott

You have a good attitude ...keep it. I will say when I was younger I could battle through my CH, by my mid thirties I couldn't no more. It seems I didn't have the stamina any longer. I've tried since my fourty's to battle through. Now since the fifties are coming I dont put myself through the pain any longer....02,02,seeds and shrooms. I would rather eat barbed wire than have that stabbing jabbing pulsation from hell working my head over.
all the best
the bb

Quote:

seasonalboomer wrote on Jan 19^th, 2009 at 8:46pm:

ROTFLMFAO. Crap. I really should have thought of all the ways that could be taken before I posted it... Now I can't stop laughing.

I still dont get it Potter.
the bb

Ah, the Kinder Gentler Chuck

Potter wrote on Jan 19^th, 2009 at 11:16am:


ummmm..... yeah he is.  

FramCire wrote on Jan 21^st, 2009 at 5:16pm:


It's been said before. Waaaay back on the original board, a guy named Marc (NOT me) posted that his best abort method was...... let's just say that his post was titled "Hands-on approach to abort CH"

The followup posts from the group was one of funniest threads that I ever recall on ch.com.  (Well, maybe that honor has to go to Drummer's Mr. Winky post)

The Other Marc

Oh Marc, PLEEEEEEEASE tell me that thread is archived!! I can only imagine the responses!!!