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

HELLO LORI
MY NAME IS ANTHONY! I TOO AM NEW TO THIS SITE AND FEEL BLESSED TO HAVE FOUND ALL OF THESE AMAZING KNOWLEDGABLE PEOPLE WORDS CANT EVEN DESCRIBE!!!! IFIND MYSELF ASKING QUESTIONS THAT I THINK SEEM SILLY AND I STILL GET ANSWERS AND NO JUDGEMENT AT ALL AND THE PROPER GUIDANCE AND SUPPORT AND LOVE JUST AMAZING SO WELCOME ABOARD!!! :)

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

Jeannie

What a great first post Lori.  Welcome to the family.  You will find more help here than anywhere else.

Hugs
Carol

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...

Hi Skullcrusher!
I love your name, because that is what I attempt! Can you tell me please, am I replying to just you, or does this reply go to everyone, or is there a way to make it go to everyone at once? Sorry I am not computer savvy, but I will master this because it is very important to me. I love all the warm welcomes. I have been reading here for a week, and I can see that the people here are great for sure. I love all the terminology, and the humor. This monster could go one of two ways, and humor is the better choice. I like to pat my O2 tank and smile at him as I go by, he is my soldier, ready to defend me. Lori.

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! ;-)

Thank you so much, that was actually very helpful and clear. Gee, what a friendly new neighborhood. Sort of soothing in the midst of all this terror. I appear to be episodic, and very thankful for that. Lori

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

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

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

hello LoriB you are not alone ! I to am hopeless at this message board stuff , Bach sent me a pm before Christmas which I have only just found in the bit where it says "you have one message"  at the top of the page , I thought that meant posts on the board  :D so sorry Bach I'm not ignoring you and I will e-mail you just as soon as i workout how to send one ( I'll ask my wife in the morning).

any way Lori welcome, sorry you need to be here but glad you found us.

Good luck, our prayers are with you.

Nigel

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

Hi everyone,
What a great experience to read all your messages of welcome. I read a few lines to my husband, but he just doesn't get it. I have to accept that no one but a fellow Clusterhead ever can. So.... Thank you all so much for being there and making me feel so good. What a terrific community. My first ever experience with an online community, what a doozie. I have lots of thoughts and questions, plenty of time for them in the days to come. Biggest moon of the year tonight, gorgeous. Sleep PF everyone. Love, Lori

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!!

Hello Lori.
Yes, I picked my name because that's what I often find myself trying to do.... My O2 tank is also my best friend. I have also being using the energy drinks this year with surprising results. During the day if I feel the monster coming to visit I quickly chug a Monster and it works. (most of the time)

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

Good Luck with your outing Lori.  Best advice I can think of is not to let the Beast rule your life.  Do what you can when you can.

There is an awesome Supporter's area on the board.  Maybe you could convince your hubby to have a look there.  It will take time to educate him and most of us have had to deal with "it's only a headache, take an aspirin" at some time or another.

Hang in there
Carol

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.

NancyB wrote on Jan 30^th, 2010 at 6:03pm:

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.

Don't talk that way about somebody who spent hours tracking down oxygen for you. He did it FOR YOU! Sheesh!

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

Welcome lori
   glad you found us... all your questions are answered here.     Lorac ...(because there is already a Carol)  ;)