Hi everyone!  My name is Shauna, I am SO EXCITED to find a place where everyone understands what you are going through!  My earliest recollection of having a cluster headache is 17 years old, which means I have been getting them for 26 years,  I thought I was dying - seriously!  I couldn't understand how someone could go through such pain and live through it.  I still don't understand it.  I went from doctor to doctor to find out what was going on.  The doctors told me it was stress, or drinking too much, etc...(I am sure you all know what I am talking about).  A lot of doctors accussed me of drug seeking and refused to even try and help. My mom gets migraines, and of course she really didn't understand me, why would someone with a headache be pacing the room, screaming, crying, banging her head when all it would do is make it worse (her thoughts).  I was really loosing my mind.  When I first started getting them there was no rhyme or reason to the pattern. it wasn't seasonal, I couldn't figure out any triggers to the start of the cluster - nothing! I really thought I was loosing my mind!  Finally I was sent to a neurologist and he diagnosed me - YEAH! I started crying with relief, somebody believed me! I wasn't crazy!  So, as I am sure the rest of you out there has, I have tried every drug on the market for both pain relief and preventative.  I would sometimes find something that seemed to work but wouldn't work for the next cluster (it is very difficult to figure out if something is actually working or if the cycle naturally ended).  I still had the same old problem with doctors thinking that I was a drug seeker though and that clouded there judgement and treatment strategy.  Then, the thing that scared me the most, the thing I dreaded since i started getting these damn headaches happened - they became chronic, I had them for about 2 years straight! I maybe had a day or to (at most) where I wouldn't get a headache but that was it!  Around the year 1994 or 1995 I met a neurologist at the University of Alberta hospital who was doing surgeries for patients whose avenues were exhausted.  The surgeries he told me about were extremly invasive and dangerous with extremly dangerous repercussions if anything went wrong.  So we started off with the least invasive which was just an injection of glycerall on the trigeminal nerve - didn't work!  The other two surgeries were major brain surgeries (can't remember the details) that had something to do with splitting the nerve (like i said, i can't remember the details).  I have two scars, one is like a question mark shaped scar that starts at my temple area and ends around the bottom of my ear lobe.  The last surgery left me with a scar that starts about 3" from my hairline on the top of my head and goes all the way down to my neck (just below the jaw line).  Unfortunately the surgeries did not work, however some of my symptoms have changed, for instance the frequency of the clusters are further apart than they used to be, I now get them approximatley 8 months apart instead of getting them for about 3 months at a time with only about months remission.  I have two children and it is extremly hard for them to deal with this disease! They are very good to me now (both teenagers), but when they were little it scared them to death. This last time however I didn't get any for about 18 months!  Yippee, I thought, maybe that's it! maybe I will never get them again (that hope is always in the back of my mind), but of course, no such luck, I started getting them again about 3 days ago  :'(  I am so angry, defeated feeling, like there is nothing more that I want right now is to die than having to go through this again!  I am a single mother now and so I am also having to work full time, which is very difficult because i don't sleep at night.  I will stop ranting now, but WOW! it feels good to talk about this to all of you who understand!  

I have been at this a long time so if there is anyone out there that thinks I may be able to help, please feel free to e-mail me anytime at shaunamote@hotmail.com

Good luck to everyone fighting the devil!

Shauna Mote
Cranbrook, BC Canada

Welcome Shauna to the board. I noticed no one appears to have even mentioned 02 (oxygen) to you or at least you didn't mention it. Read all about 02 on the left. Many here get relief in 5-15 minutes breathing 02 from a tank using a regulator with a flow of at least 15LPM. It is safe and usually very effective. Read all you can on other helpful hints and drugs that DO work, like Imetrix injectors or nasal. Good luck and keep posting and asking questions.

Welcome to the board! Sorry it took so long to get back to you, many of us were at the OUCH (Organization for Understanding Cluster Headaches) Convention in Saint Louis. When you get a second, let us know how you deal with CH, what you use for a preventative and what you use to abort. My system is a 2 pronged approach many find effective:

1: A good prevent strategy. This is a medication you take daily while on cycle to reduce the frequency and intensity of your attacks. I use lithium at 1200 mg a day, cuts down about 70% of my attacks. Verapamil and Topomax are 2 other front line prevents enjoying a good degree of success on the board. All require working very closely with your doc.

2: A good abortive strategy. A headache is starting, now what? As Jimi mentioned, oxygen should be your first line abortive! I can abort an attack, be pain free, in 6-8 minutes using oxygen. Read the link on the left as it MUST be used correctly or it won't work. Imitrex injectables and nasal sprays are also popular abortives. I have stopped using imitrex as the oxygen works so well.

That's what works for me. Many variations on that theme you'll hear about from others. Glad you found us, hope we can help you!

Joe

Hi Shauna, and welcome to the board.

It seems that you have been very unfortunate and that nothing has seemed to work for thus far. Definitely have a look at the 02 section to your left, its a little miracle in a tank.. ;)

Let us know how it works out for you.

Take Care

lefty...!