Hi Everyone, This is my very first entry. I am Lori in Carlsbad, California near San Diego. Although I email a lot, I have never used a message board, blog, chatroom, or whatever, so I may not do this correctly. I cannot tell you how much I have learned from all of you, both factually and spiritually. I sure do see a lot of brave people out there, and you have been a light in a very dark night for me. So by way of introduction, here goes...
The Top 10 List of Ways to Tell You Are New to the Clusterhead Club:
10.  You tried taking 8 Ibuprofen pills at one time. Didn't matter if you cooked your liver, in a hepatic coma you might not feel your head exploding.
9.  You knew you would die at any second of a brain tumor or aneurysm and that was a happy thought.
8.  You attempted to crush your skull for 2 hours during a Kip level 10 in the ER waiting room because you were too ignorant to demand a simple thing like Oxygen.
7.  The thought of never seeing your family again was better than the thought of having them see you like this.
6.  You let the ER Team give you the "Migraine Protocol" and send you on your way with Imitrex Pills because you weren't even able to speak.
5.  You didn't take even one pill from the big bottle of Vicodin you Primary Physician gave you, because it seemed absolutely irrelevant. But your new favorite drug in the entire universe is Prednisone.
4.  After doing tons of internet research and taking it to your Internist, you feel like you have won the biggest lottery in the world when you leave with prescriptions for Prednisone, Imitrex Injections, Home Oxygen and Topamax.  You feel absolutely blessed that you are an RN with excellent health insurance, and you respond well to the medications.
3.  Although of course the Oxygen is not delivered with the right mask, you order one from DJ who sends it the very same day, which makes you want to cry. Because he knows.
2.  You know how lucky you are to have a loving husband, and you have never appreciated him more. In your 20 years together, he has never taken better care of you because this thing scared the bejeepers out of him. Still, you could slap him when he tells people you "have a migraine".

AND, the NUMBER ONE way to tell you are new to the Clusterhead Club:
1.  You cried when you found the Clusterhedaches.com website. Other people know what you are going through. They understand. They are the only ones who possibly could.

Thank you, all of you. I cannot imagine how people survived this when they did not have treatments, or support. I look forward to hearing from you, and getting to know you. Love, Lori

Welcome home, Lori.  Sounds like you have your ducks in a row and are well on your way to fighting this beast!

Jeannie

Hello Lori.
I too have never belonged to any other message board and have found this site amazing!!!
The people here are great and I hope you get all the help and comfort needed to make it through this incredibly enjoyable time. I'm almost 6 months straight right now and hoping to see the light at the end of the tunnel???
All the best.
I liked your list especially number 1...

Lori - if you just click on the reply button and make your post, then we will all see it.

If you want to make a private post to a specific person, then look down at the bottom left - you will see a PM button.  When you do that - it only goes to the person you intended.

If that sounds confusing - I'm sure someone else will come along and make it more clear.  I'm not the most computer savvy one around the joint!

LoriB wrote on Jan 29^th, 2010 at 4:46pm:



Hell, somebody here hold him and I'll slap him for you (coming from a supporter)

Hiya Lori,

Welcome aboard...you are home...and WOW....your insights took me years to discover....to paraphrase "aussiebrian"....28 years of this ch and still no bloody good at it.....GREAT first post!

Grab an oar and row...."aint no passengers on this bucket...only crew". You got the wind at your stern, a firm grip on the oar, an excellent first mate, and a fix on the destination......

Your list could only have been written by someone who has been there...and just blew me away!...especially #1.

BIG...FAT ...TEARS here myself...couldn't see the screen anymore......NOTHING like finding family who knew EXACTLY what no one else did. Angels walk the earth....one is named DJ....you'll find MANY more here.

Best,

Jon

Hey Lori B. I feel awkward saying welcome since I'm a newbie too (don't want to appear like anything other than the grateful new guy).

I would be interested to know your CH history? Is this your first cycle? If not, how long do your cycles usually last?

Wow, when I was first introduced to Prednisone!! I do find that after treating several cycles one taper doesn't do it (although the first cycle still kills all hits until dose gets to about 30mgs) I ended up abusing this last cycle, taking too much too often and I'm suffering some rather nasty side effects. Skin infections, icky stuff.
Cafergot is my new favorite!! Cheap and worked like a champ!! no hits period, then cycle ended.

Best to you and your family.. Sounds like your a soldier!!

Hi guys,
Nice to hear from you - A quick check this am before heading out. I will answer your questions about my history later today or tomorrow, I want to do it thoughtfully. How long of a story would you like? Today I head out for my first big social activity since this monster hit, and I am nervous. Never felt this way before, but I sure can see how people get agoraphobia (that thing where they can't leave the house). Gotta leave my O2 soldier, but I will have the imitrex in my purse. Bummer guys don't have a purse! So wish me luck today! Love, Lori

I think we're married to the same guy. Even so he spent hours tracking down those O2 tanks for me today so I guess I'll keep him even if he is a dork sometimes.

Hello again new friends,
Great to hear from all of you. My social outing yesterday -huge noisy ladies lunch, I sat on the outside edge with my dear daughter went just fine. I think the meds stopped this cycle, no explosions for a week now. Today is the last day of my prednisone, and the background headache is much worse which is of some concern. Not sure if I dare take anything for it like Motrin....I have decided to be on a 100 year cycle, so we will see....   

Take a little timeout and visualize the beautiful, healing thing I did last night - a live George Winston solo performance in a small intimate setting. (yeah, some of you will have no idea of George Winston, so skip this). I sat 30ft from his open full size Steinway Grand Piano, closed my eyes, and let my head be totally filled with something other than overwhelming exploding pain. I know you get it. Awesome way to reset.

So, I was asked about my history, it is not exactly typical, but I think in the ballpark. But you know, it is Sunday morning here and I am feeling pretty good. I really want to be happy and enjoy my day. I look forward to sharing more with you, I'll try to get my history organized and be back later to share it with you. Thank you for being the caring community that you are. I am learning a lot about the technical-medical side of CH here which is so important. I have lots of questions about how people are coping with the uncertainty of this thing. How can you make plans, or commitments. I have always been a reliable person, now I fear being one of those flaky ones. Just what is on my mind when I am able to stop thinking of the terror of the head explosion.

Enjoy your Sunday. Love, Lori