My name is Clark, I am 33 years old, and I was diagnosed yesterday. 

My first episode was September 2004, and the doctors told me I had a sinus infection.  It started again three weeks ago, and with my persistency I was finally referred to a neurologist.

I must say that after doing some preliminary research I am very frightened. I have had a gunshot wound to the chest, and endured three months of medical torture, and that pain is a walk in the park compared to these headaches. Right now I am afraid of going to sleep because I know what’s coming. 

Anyway, I am here to learn as much as I can and I wanted to say hello.

Sorry to welcome you into our group.  Be happy you have found one of the best resources for ClusterHeads like yourself.  Read up on the treatments, look into 02 especially!

I'm only 23 and have had clusters for about 7 years now.  Mine (luckily) are not as frequent as some people, but have been getting worse.  Still know what that Kip9 headache feels like though.

Cluster's have been likened to natural childbirth, or amputation of a limb without anesthetic, and other incredibly painful horrors (like your bullet wound).  Not that I've felt any of those, but I know these are the most painful thing I would ever be able to experience without dying and are the limit of what I can stand. 

Keep checking back in here.  Very kind, understanding people are waiting to hear updates from you!  Getting diagnosed is a HUGE first step.  Some suffer for years before CHs are properly diagnosed, so consider yourself lucky.

Good luck, hang in there!

Hi Clark and Welcome, sorry the beast has you walking the plank.

It may take a year or more for the fright to dissipate, but it will eventually and you know what?...It will be for the same reason you are now afraid to go to sleep, "you know what's coming", by then you should be able to deal with it a bit better.

I've had CH for 10 years and am a chronic CH'er.  I didn't deal with it well when I first found out and denial was my 1st obstacle aside from the CH itself.  But then I wasn't functioning at all at that time.  When I was 1st diagnosed I was getting up to 20 CH hits per day. 

Now that I've been at this awhile it's a bit easier to deal with.  I get hit, deal with it and then it's back to business as usual.  It doesn't interfere with my work often and most of the people I work with are understanding about it.  If you wish you can download this letter START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE to better help your employer to understand your condition.

My Advice to you is to read as much as possible and not to be afraid to try new things, along with your medication if necessary.  There are things that can help get you through the night such as Melatonin or even an over the counter allergy pill such as Zyrtec or it's generic cetirizine (take either 1 hour before bed).  These may help you get a good nights sleep without a CH hit.

Get some O2 as well it will kill a CH hit for most people.

Most of all know that you are not alone and Read read read all the info you can on this site.

Best Wishes & PF days and nights to you!

Hi Clark, and welcome to the site. Have you seen the neuro yet? If not, arm yourself with the O2 info you can pick up here (see link to the left) and be prepared to discuss preventatives such as verapamil or lithium. Some people find a couple week prednisone taper helps while the other meds kick in. Discuss with your neuro - hopefully he or she has experience with CH. If not, help to educate them - point them to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Stay in touch and let us know how your appt goes.

Christy

Hi Clark and sorry you are having to deal with this horror. Trying O2 is definitely a must for you. You'll find lots of info on it here.

I was 23 as well when I got my first hit. I had no idea that it was something unfortunately shared by others. On the plus side, I haven't had a bad hit since I was 45 in 1991. Other than perhaps some combination of drugs taken over the years for epilepsy, I don't know why they went away.

Here is something I post now and then:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from my neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      

Hi Clark, welcome aboard.

You have been given good advice by all those who preceded me

Lots of information here, don't be scared of what you find . It will help you in your battle against the Beast.

All the best :)

Thank you for the warm welcomes!

My doctor put me on verapamil, so that makes me feel like she knows what she is doing.

Clark,

First, welcome!

Next, get some O2 as already suggested - and let us know how you are doing with Verapamil.

Marc

Welcome Clark!

Stick around and READ as much as you can retain.  Since I joined over a year ago, this site has helped me more than any doctor.  It's like family here.

I'm wishing PF days for you soon my friend.

Peace,
Chad

Welcome Clark.

What they said!   ;)

Good luck with your fight!

Welcome also....pull up a chair, and start reading.

I also take Verapimil, with good results...just watch your blood pressure, and take a stool softener. :) :D