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        New Message Board Archives >> 2002 Posts >> Hello, new member. I don't know what to do anymore
        
(Message started by: The_L on Aug 6^th, 2002, 7:17am)

Title: Hello, new member. I don't know what to do anymore
Post by The_L on Aug 6^th, 2002, 7:17am

:'(
Wassup board.
I'm Lawrence. My friends call me, The L. I'm a 24 year old black male, and I live in Gary, Indiana. I've been having these bastard headaches since I was 13. When I first started having these, I didnt know what the hell they were. These pains started everyday, when I was thirteen, i remember being in my algeba class. They started at the same time everyday, and they always hurt on the right side of my head.
I've had these off an on all these years, but lately, they've started to interfere with my everyday life. I'm a student at Devry University, in Tinley Park Illinois, and I've had to miss class, after class, after class, and i've had to take a "medical leave" from work.
I've been on the internet alot, becuz I havent been able to do much else lately.
These cluster headaches will cause me to eventually flunk out of school.
I've sat in class, in labs, and amongst other students, the pain begins. I'm in the middle of class, with this terrible cluster, and I have to hide it from my classmates, becuz they dont understand that its not just another headache.
As I type this, i'm missing class now. I've never felt this depressed in my whole life.
I've never met another person with these clusters, but I sure would like to.
When I was younger, I though these pains were normal because I had them so much.
As I grew older, I finally realized I had something RARE.
I need u guys, to help me, to tell me, how can I live like this.
I dont know what to do anymore.
I try everything I can to keep the faith, but its not that simple when you feel the pain.

Title: Re: Hello, new member. I don't know what to do any
Post by don on Aug 6^th, 2002, 7:30am

1. First go see a neuro and research the life out of this site and the OUCH site.

2. Join OUCH.

3. I did 6 years of full time school with CH. Find a good abortive (imitrex) and sit near the door. Educate your profs.

4. Dont say WASSSUP.

Title: Re: Hello, new member. I don't know what to do any
Post by Svenn on Aug 6^th, 2002, 7:55am

just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few seconds after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

Title: Re: Hello, new member. I don't know what to do any
Post by williamsmh on Aug 6^th, 2002, 8:05am

Welcome... Sorry you have to be here!

Before I was diagnosed I had a hard time with my job because they couldn't understand why I had to come in late sometimes. Once I was diagnosed and gave them one of the letters (posted on this board) that describes cluster it helped a lot. You might want to give your profs a copy.

I am on Sansert (and haven't had a cluster in a week!!!). I have also been on prednisone which works for awhile, also.

Imitrex injections end my ha in 15 minutes. I inject at work and keep going.

Good luck!
Mark

Title: Re: Hello, new member. I don't know what to do any
Post by nancyc on Aug 6^th, 2002, 9:36am

As I read your post, i was reminded of when i was in nursing school and the beast was on a rampage...after 14 months of hell, i ended up going in the hospital for DHE IV treatments...Do you have a good neurologist? IF not , get one fast...you did not mention what meds you have tried but verapamil is a good one to start with...Praying the beast gives you a break...stick around here for support....that is what this site is all about...smiles,nancyc

Title: Re: Hello, new member. I don't know what to do any
Post by Drk^Angel on Aug 6^th, 2002, 8:47pm

Welcome to the board! Sorry that the beast has planted a flag in the name of pain in your cranium, and finds great pleasure drivin' it a little deeper each day. I was 11 when cluster started hitting me. I spent many days in grammar school in a dark, empty classroom 'til the attack would get over with, and let me go back to class. Ended up droppin' out of college my first term when the beast showed up during a particularly difficult time, and the combined stress made it impossible for me to do much of anything. Hope you have better luck than I did. Definately get some help with the clusters as soon as possible. Hopfully it won't be too long before you find the combo that works. Good luck!

PFDAN....................... Drk^Angel

Title: Re: Hello, new member. I don't know what to do any
Post by williamsmh on Aug 6^th, 2002, 8:51pm

Wow Drk^Angel

I can't imagine having cluster so young... I know it happens... I was lucky... I started migraine at 3, but didn't start cluster until my early 20s (after I graduated college).

Trying to study would be horrible.

I did have it while getting my Masters, but I typically only took one class per quarter and I had imitrex!

Were you diagnosed that early or did that come later?
I know that in elementary school they didn't know what to do with me having migraines - they probably really had problems with cluster.

Mark

Title: Re: Hello, new member. I don't know what to do any
Post by Drk^Angel on Aug 6^th, 2002, 9:00pm

Didn't get diagnosed until this past May. When I was a kid, the docs kept tellin' my parents that I couldn't possibly have headaches, because children don't get headaches. Can't remember how many docs my mom totally cussed out. The first attack I had was while at school, and I thought it was something wrong with my eyes. They left me sitting in the principal's office for two hours, then the principal looked at my eyes, and said I was okay. Of course, by then, the attack had run it's course. In junior high, they were more understanding. Prolly because enough teachers had seen how I looked when I was getting hit to not assume I was faking. In high school, I didn't get as much understanding, bur luckily most of my attacks were at night then. Fun fun fun 'eh?

PFDAN..................... Drk^Angel

Title: Re: Hello, new member. I don't know what to do any
Post by Donna on Aug 6^th, 2002, 9:06pm

Hello L..........so glad you found this site.

There is so much info here that it will take you some time to read it all, but you will benefit if you do. It has taken the experiences of hundreds of people and the research of many of us to complie the wealth of info found here (left margin) and the OUCH site.

The most popular meds seem to be a high dosage of Verapimil ( up to 900 some mg per day, max.) as a preventative, and 02 used with a non-rebreather mask, up to 10 ml, and Imetrix as abortives.

You will find much discussion on medications in the archives.

Good luck, and don't let the Beast rob you of the goal you have set for yourself.

Title: Re: Hello, new member. I don't know what to do any
Post by Charlie on Aug 6^th, 2002, 9:49pm

Welcome to our world. You'll find just about everything here relating to clusters and a lot of other stuff. As our friend says: Take what ya need and leave the rest.

If you read a lot here, you'll likely find someting that will help. It happens all the time. On that, here is a technique I found very helpful:

http://www.chhelp.org/circ.html

Stick around. Tell us more and along the way we'll both learn something.

Charlie

Title: Re: Hello, new member. I don't know what to do any
Post by Scotty_Dog on Aug 7^th, 2002, 1:52am

Keep the faith “L”

I am glad you found you way to this board, and very sorry for the reason you looked for it. I know it very frightening when you first start having the Beast visit you, and lonely too. Nobody understands what you are going though. But you have to keep the faith!

Speaking of Faith, I assume you are speaking of being a Christian, and as one, I would encourage you to stay away from televangelist and stick to the teachings of a fundamental Christian doctrine. Please read and I mean read, the book of Job. You will notice that Job did not suffer because he was being punished, but suffered because of righteousness. Remember it is OK to cry, and OK to ask God why, but like Job, we are not intelligent enough to understand the answer. Just remember that God is a good Father, and as one, if He punishes us, we very clearly know the reason. You are among friends and fellow travelers here at CH, and we will do all we can to lift you up and encourage you, but you have to be willing to fight back against the Beast of torment and get the help you need.

If you want to talk about God, or how I am a Christian who has not found anything that works for my Beast, and I have been in torment for over 20 years, send me an E-mail.

Also, I say, stop using the Wassup thing. Does not sound like college level education to me, ;-)

Title: Re: Hello, new member. I don't know what to do any
Post by Kezz on Aug 7^th, 2002, 2:24am

Hi,

I have to agree with so many of the other replies. Read up on CH on this site. It is excellent. I have only had CH for two weeks now but I have learnt heaps. I'm 14 and my headaches do interrupt with my schooling but I know that without school I really won't get anywhere. Don't let CH interfere. Get on with YOUR life not the HEADACHES life. And remember, God WILL get you through this. It's just all a part of the life plan he has for us. Cya.

Kezz

Title: Re: Hello, new member. I don't know what to do any
Post by Ted on Aug 7^th, 2002, 3:28am

Hey Kezz. Welcome aboard. Shit, I hate that term. Sounds too fake to me. Let me try again. Well, a fine hoodly do to you. Nope. that doesn't work either. Sounds too much like Ned Flanders on the Simpsons. Alright. Let's forget the formalities. You're 14 and you've got them? Man, am I sorry to hear that. Stick with us and we'll bore the shit out of you (you watch. I'm going to get bitched at for using swears in front of you now) but we'll also pull you through your tough times. So stick with us. And if you have homework you need to do but can't because of an attack, don't worry. DJ will do it for you in his spare time.

Title: Re: Hello, new member. I don't know what to do any
Post by Charlie on Aug 7^th, 2002, 4:05am

Lawrence & others:

I forgot to link to Simon's letter which is worth copying for your friends, classmates, teachers, and family. This letter describes well for others the who, what, when, why, and where of CH. Don't pass it up. Perhaps this will help you to get along better in your classes:

http://www.ouch-uk.org/ch/note_colleagues.cfm

Take care and let us know how you're doing. Keeping in touch can help you as well as us.

Really hopeful old Charlie

Title: Re: Hello, new member. I don't know what to do any
Post by Jim R on Aug 7^th, 2002, 5:45am

Hello Lawrence,

Sorry you have to be here, but it IS a great place to be... I'm 47 now and these damn CH started when I was 22 or so. There are many medications out there that CAN help with these and if you find a good neurologist, he/she will help you explore which one is best for you. In my case, before I was diagnosed properly, antihistamines helped me but then stopped. Then I went to the doc's and verapamil 240 mgs., extended release prevented them for about 6-8 years and stopped. Last year was hell for me - trips to the ER, shots of morphine, droperidol, percocet, vicodin...finally my neurologist said let's try lithium. It worked after getting my blood level up (about 4 days). No more pain BUT I felt like a drone... I'm cyclical, so my headaches usually go away sometime in January and return in Sept., so I stopped the lithium and have been PF until about a month ago when they started up again - early. Now getting hit night and day (about two a day) and they hurt like hell, but right now they're building up to the really intense ones. The ones I am having now are just opening acts for the main show to come later. I will probably be back on lithium before ya know it.

Find something that helps. Oxygen works for some and has helped me, but has stopped being an effective, longlasting abortive medication for me, unfortunately. As far as school, I got Associate, Bachelor, and Master degrees all the while having these damn headaches, so it can be done, but you need the help of a good doc to do it...

Good luck bro and welcome to the board.

Jim R

Title: Re: Hello, new member. I don't know what to do any
Post by BobG on Aug 8^th, 2002, 12:51pm

Wassup den!

Here we can be uppity,

shape up,

act up,

link up,

hicc up,

7 Up,

grow up,

screw up,

dress up,

give up,

fuck up,

be up shit creek,

go up north,

and Yes, we can say Wassup.

So, Wassup ya'll.

Title: Re: Hello, new member. I don't know what to do any
Post by echo on Aug 8^th, 2002, 1:03pm

Welcome to our little corner of the world L. Sorry to read you are having a dance at such a young age. Mine didn't take over my life until my sociology class in Vietnam.
Stick around, read, learn, input and support.

JimR -- Nice pic, love sitting on the water. Even tho owning a boat is nothing more than a hole in the water to which one throws a lot of money into. Recently bought a used 21f open bow to enjoy this summer.

Title: Re: Hello, new member. I don't know what to do any
Post by Jim R on Aug 8^th, 2002, 4:23pm

echo- yup, that's where I try to spend my PF time ;D

It's only a Four Winns 17 footer Horizon that I trailer to our nearby lakes. Would like a cabin cruiser someday and live down south in the winter and back up here on the boat in the summer. You're right though - $$$ down that hole, but worth it IMHO!

Take care and enjoy your BIG boat!! :)

Jim R

Title: Re: Hello, new member. I don't know what to do any
Post by The_L on Aug 10^th, 2002, 8:28am

Thanks you guys for welcoming me to the board, and giving me medical advice. I'm glad there are other people who UNDERSTAND, this type of PAIN.

Title: Re: Hello, new member. I don't know what to do any
Post by don on Aug 10^th, 2002, 9:09am

Hey Den. Is your ass still giped?

I have never encouraged anyone to "let their light shine"

In fact I will ussually suggest you turn the damn thing off and go to bed.

OK L, say whatever you want. BobG missed one of the most imnportant and widely used ones in his list. It's;

SFUD= Shut the Fuck Up Don

Title: Re: Hello, new member. I don't know what to do any
Post by oringkid on Aug 10^th, 2002, 9:55am

Welcome L! You have found the ultimate place for info on CH and a group of really great (but very crazy) people!

I too started young (12) and thought that was just the way headaches were. I remember walking to the school bus stop hoping the cold air would make it go away before I got to school.

Take these peoples advise and get a good doctor. Don't let the beast screw up your education.

Sherry

Title: Re: Hello, new member. I don't know what to do any
Post by don on Aug 11^th, 2002, 8:15am

Den

I could email them to ya. ;D

Title: Re: Hello, new member. I don't know what to do any
Post by kim on Aug 11^th, 2002, 8:45am

Hel L,

WASSUP! ;D

As you can see, you are NOT ALONE. The above advice is right on. It is KEY to get yourself to a neurologist who has some knowleadge of cluster headaches. Then, you start the journey to finding the right preventative along with an effective abortive. The information available at this sight is immeasurable! Print out as much as you can and bring with you to the doc.

I started young too (about 13) and totally relate to your school experience. It is very difficult. Thankfully you now have this place to help you out. I did not. No one understood what was going on and it took me DECADES to start getting in the right direction.

I encourage you to look into oxygen as an abortive. It is natural with no side effects and works GREAT for LOTS of folks around here.

Good Luck L,

Kim