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        New Message Board Archives >> 2002 Posts >> Sick and Tired
        
(Message started by: Night_Owl on Aug 15^th, 2002, 10:21pm)

Title: Sick and Tired
Post by Night_Owl on Aug 15^th, 2002, 10:21pm

I am so tired of this. I am in the 10th grade and can barely make it through the school year. My CH's occur all of the time. It never goes away. Most of the time it is about a 3, but then every night it gets pretty bad. I missed 20 days of school last year, and can't afford to do it again this year. Nothing helps. I take 3200 ml. of Motrin a day just so I can get through school. When I come home I lock myself in my room and punch my punching bag until my knuckles bleed. I get 4 maybe 5 hours of sleep a night. I don't even remember falling asleep most of the time, I guess I just cry till I do. My mom thinks I'm over-reacting. She is busy with her work most of the time, travels a lot. I don't tell my dad much, he worries. My teachers just think I am depressed and nuts. They mistake being in a bad mood with trying to stay concious. And anyway, who wouldn't be depressed? It really bugs me when people pretend to know what it's like. They have know idea. Thanks for reading.

Night_Owl

Title: Re: Sick and Tired
Post by Drk^Angel on Aug 15^th, 2002, 10:28pm

Welcome to the board! Sorry that the beast is using your cranium as a punching bag, and has broken glass glued to his gloves. What you need is to have your parents find you a good neuro, so you can get on some proper cluster meds. Good luck!

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

Title: Re: Sick and Tired
Post by kim on Aug 15^th, 2002, 10:41pm

Night Owl:

Please read all the information available at this website. Use the buttons on the left to help.

Most of the people at this website (including myself) were at the SAME PLACE you are now. It is important for you to not be overwhelmed by the lack of understanding and knowledge of family/teachers. Print out everything you find here. Give to family and teachers (guidance counselor?). You are NOT alone. It can get better RIGHT NOW.

I wish you much luck. The headaches are God Awful. But the lack of understanding you encounter is what really can trip you up.

Please stick around and be strong. Need help? We are here!
Smiles, Kim

Title: Re: Sick and Tired
Post by Charlie on Aug 15^th, 2002, 10:45pm

Welcome to our world. You are not alone and everyone here knows, really knows that this has nothing in common with other headaches. They have been called suicide headaches for a reason. Anyway, here is the link to Simon's letter from OUCH UK. He suggests printing it and many of us do as it's the best we have and it's great for friends, family, and in your case teachers:

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

This next link is something learned from my old neurologist. It's supposed to be more effective for those with good circulation and that means young.

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

Tell your mom that hundreds of people here who post on this board know you are not exaggerating. In my 56 years, nothing has been more painful.

If you keep reading, you'll likely find something here to help. It happens all the time. Good luck and keep in touch.

Charlie

Title: Re: Sick and Tired
Post by CC on Aug 15^th, 2002, 10:48pm

Sorry to here that!! For what its worth, thats about the time i started getting my clusters. I am 26 now and on some good medication that helps me through my bouts!! i was in your position with my parents thinking i was over reacting, I actully suffered a good 3 or 4 years taking only advil and tylenol, I finally broke down one day and told them if i dont get some help for these i may not want to live much longer, after that they sent me to neurologists all over the place and i finally got a hold of medication that works, Now i look back and cant believe i made it through those years without it. Basically what i am telling you is that if your parents wont listen, take it upon yourself to go to your doctor ALONE, tell him exactly whats going on and that u want to go to a neurologist. If he has any brains he will refer you to one! TRUST ME, THERE IS NO REASON FOR YOU TO HAVE TO SUFFER THROUGH THEM, THERE ARE GOOD MEDICATIONS OUT THERE THAT WILL GET YOU THROUGH YOUR DAYS!!! SO GET YOUR HOPES UP!! IT WILL GET BETTER!! You ever want to talk about it feel free to e-mail me anytime cboc@sympatico.ca

Peace! :o

Title: Re: Sick and Tired
Post by markdavid on Aug 15^th, 2002, 11:00pm

Welcome, lots of good Info. and great people on this site... Get as much info as you can, get the right meds. there are some good ones out there now , were'nt when I had this shit in high school, wwwwhhhheeeeee those were some fun times............welcome, good to have ya
PFDAN's
markdavid

Title: Re: Sick and Tired
Post by Melissa on Aug 15^th, 2002, 11:12pm

Hello Night Owl...

I know you are tired and hurting, but what these kind people have told you, is excellent advice.

I am concerned though, about the amount of motrin you've been taking. Please do be careful with it, for ibuprofen (motrin) thins out the blood, and can give you incredible stomach pain, among other serious side effects, from bleeding. (This has happened to me)

Take care, and good luck!
Melissa

Title: Re: Sick and Tired
Post by Edna on Aug 16^th, 2002, 9:27am

Oh night owl, do I hear your pain. My ch started in 9th grade and hearing your story brings back many many memories. High school sometimes got unbearable with the pain I endured. And today there is no reason for you to have to go through the same as I did for so long. It was YEARS before I got any kind of actual help for my ch........PLEASE don't wait that long. There are too many helpful things out there for you.

If I'm figuring right....you're about the age of my son which is 15, which means you're old enough to insist upon getting some kind of help. So read, read, read here all you can. Had the same attitude with my parents back when. No need for that for you. Print whatever materials you can from here and then show it to your mom. It's likely she won't want to come to the puter to see...so make it your business to bring it to her.

Get to a doctor......even if they refuse to bring you to a neuro.....perhaps your doctor may still help once you bring along printed info from here too. I see only my family practioner so far and have much luck with that...so it's worth a try.

So wishing you much luck and success with some kind of treatment.......please keep us posted........Your family here cares! :)

EDNA pst....check your private message ok?

Title: Re: Sick and Tired
Post by TomM on Aug 16^th, 2002, 9:42am

Be careful with Motrin. "During long-term therapy, kidney function should be monitored periodically, particularly in those patients at high risk for developing renal dysfunction. "
From this site:
http://www.rxmed.com/rxmed/b.main/b2.pharmaceutical/b2.1.monographs/cps-%20monographs/cps-%20(general%20monographs-%20m)/motrin.html

--TomM--

Title: Re: Sick and Tired
Post by jimbo on Aug 16^th, 2002, 10:59am

Tell and show your folks about this site! They can ask us as many questions as they like. There is no reason you have to put up with this. Ignoring you and denial on their part is doing you absolutely no good. Three more things..

#1 GET TO A DOCTOR

#2 GET TO A DOCTOR

#3 GET TO A DOCTOR

P.S. Arm yourself with tons of info. from this site when you go see the doctor. Believe me there is nothing worse than a doctor ignorant to the reality of a CH.

Keep us informed. If your parents have email I'm sure some of the angels on this site would be glad to talk to them regarding your situation.

Seeya,

Jimbo..........

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 3:24pm

Hey,
Thankyou for all of your support. I will have to figure out something. I appreciate all of your concern. The Motrin isn't working, so I have stopped that. My bedroom wall is now a good make-shift med. Thanks again.

Title: Re: Sick and Tired
Post by jimbo on Aug 16^th, 2002, 4:15pm

Do your parents have medical insurance? If not, is that the reason that your pain is being dismissed? I am sorry, but I am starting to get a little pissed at the non-compassion by others for your pain. >:(There is nothing worse than ignorant people or doctors (Assuming that you have been to see one). or maybe your parents believe everything that he says, and nothing could be worse for you if he has no idea what you are going through! Someone, somewhere has got to try to help you! I don't care if you have to be beligerent with your parents but you have got to try to find a way to make them understand what the hell is going on! YELL IN THEIR EARS IF YOU HAVE TO! Sorry for venting but I have been in a similar situation when I was younger and I guess your story just opened up an old wound from when I was younger.

LET US KNOW WHAT THE HECK IS GOING ON!

Ventfully,

Jimbo..............

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 4:28pm

Well my dad is military so we get free medical. My mom just puts it off. I have told her time and time again. She pisses me off so bad sometimes. Then what really makes me mad is when she says something like "oh my head hurts, I have to go lay down". I am thinking well my head hurts too, and you have no damn clue. But do I complain? No, I suck it up and shut up about it. ARGGH! I feel better now.

Title: Re: Sick and Tired
Post by Ree on Aug 16^th, 2002, 4:56pm

Hey I'm glad you have us to vent to but you seriously need to get your mother and show her this board... My husband has CH and no one ever took him seriously either... we gotta get you through high school so you can help us cure this thing...You need a preventative and an abortive... I have overused the motrin too and ended up with early ulcer symptoms so that isnt a good idea... My two sons are in the military so I know you will have good medical care as long as you find a neuro that can grasp the intensity of and knows CH... keep coming here there are other young members of the board maybe you can ge them writing more and posting more frequently... thats a part of CH we dont get everyday. "Going through the motions of adolescence with CLUSTER Headaches"... I barely made it through with Migraine... good luck... you have friends here Ree

Title: Re: Sick and Tired
Post by Drk^Angel on Aug 16^th, 2002, 5:06pm

No offense Night Owl, but your mom needs a swift kick to the arse. When I was a kid, at least my parents believed my headaches were real, even if the doctors didn't want to. My cussed out plenty of doctors when all they would say about me was that "Children don't get headaches." Even at the time, that old wives tale was being disproved, but these damn GPs were too buzy collecting their patients money, and not enough time keeping up with the times. I personally went way too long without a proper diagnosis, or treatment, and know how hard it can be to deal with things. Grade school was bad, high school was worse, but if you plan to go to college, you're going to find it damn near impossible to study with a kip10 scrambling your brain. The sooner you find a treatment that works, the better you'll be in the long run. Good luck!

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

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 5:12pm

I know how that is. I used to get migraines too. Not for long, a couple years. I still get em every once in a while, but not nearly as frequently as CH's. Speak of the devil, here he comes. They are more frequent now, and come earlier. This really sucks man.

Title: Re: Sick and Tired
Post by Ree on Aug 16^th, 2002, 5:17pm

Why if there are so many of you ... CANT WE WOOP SOME CH ARSE as you put it Drk???? there are almost 2000 members of this site... lets get loud and mean... I want to see in my life time an end to this maddness...

another pissed off moment from REE I must be PMSing...

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 5:21pm

That would be nice. And with our luck, we all get stuck with a problem about the body part that is the least known about. It couldn't be something else?! I wish it was my foot.

Title: Re: Sick and Tired
Post by Drk^Angel on Aug 16^th, 2002, 5:49pm

Well Ree... It seems to me there's a lot of factors working against the clusterheads.

#1... They haven't even found a cure for migraines yet, and docs have been diagnosing them for ever.
#2... When compared to many ailments, clusters aren't that common.
#3... And #2 leads us to the main reason... How profitable is it for the pharmacueticals to research a cure for a rare syndrome? They'd prolly make a lot more money providing a partial treatment, on drugs they actually researched and developed for a much larger community. The medical profession makes more money off treatments than they do cures.
#4... Very little publicity for our ailment.
#5... It's not a terminal illness, so don't rank as high as other ailments in the public view.

Basically... Our hope for a cure is either for someone outragiously wealthy decides to make clusters his pet cause... Or someone famous... Or for a clusterhead to make a brakethrough in their own treatment (kinda like the shrooms).

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

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 5:57pm

Anyone happen to know any celebrities we can call? Or anyone rich even?

Title: Re: Sick and Tired
Post by Drk^Angel on Aug 16^th, 2002, 6:03pm

I wish I knew the number of some rich celebrities... lol Hell... My own friends don't even give me their numbers... :P

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

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 6:05pm

yeah me neither

Title: Re: Sick and Tired
Post by Not4Hire on Aug 16^th, 2002, 6:06pm

...lets see.......jonny's a *legend in his own mind*
......and the rest of us are broke from buyin' Imitrex and lining rich neuros pockets......

...now Slammy is the *name-dropper*....... hangs out in LaLaLand pickin' up rich divorcees...... we hit him up to schmooze Dr. Kudrow (Lisa's sis)...... but he pointedly ignored us.........hmmmmmm

....sorry 'Owl.... we be toast..... >:(

Title: Re: Sick and Tired
Post by Slammy on Aug 16^th, 2002, 6:22pm

Oh man! I didn't get the note that today is "Slam Slammy Day!"

That's it, time for me to get out of the pool!

Dr. Kudrow is Lisa's Bro, not sis... and Slammy isn't finished working on him....However, I have contacted Lisa's publicist to pass a message to Lisa ( that's how you do things here in La-La Land....)

Living where I live, seeing celebrities out and about is very common....respecting their privacy makes them more approachable when the timing is right...

I would never pointedly ignore anyone on here..... :)

ok.. Slammy's limping home for the weekend...

maybe my self-esteem will return next week!

until then...... :)

Slammy 8)

Title: Re: Sick and Tired
Post by Not4Hire on Aug 16^th, 2002, 7:52pm

...well, good on ya then..... keep us posted......

sorry I dropped the word *his* betwixt "Lisa's" and "sis'.... sheesh, everybody's a Englard grammy perfesser here.....

...and I got the raise from ya I wanted...... ;D ......so I'm good fer the weekend too........

(sniff....wish I HAD a pool............the $heepdip tank just don't cut it)

Title: Re: Sick and Tired
Post by jonny on Aug 16^th, 2002, 8:11pm

...lets see.......jonny's a *legend in his own mind*
......and the rest of us are broke from buyin' Imitrex and lining rich neuros pockets......

Tell me NOT4 fuck face where you get off?

Im a ledgend alright, when you can come close to this list ill respect you. otherwise you are a scumbag for bringing my name up. douchebag!!!!!!!

Have you paid for 36 memberships to OUCH?

Have you donated $900 to OUCH?

Have you bought 32 OUCH shirts and gave them to people that could not afford them?

Have you had 300 Clusterheadaches.com bumperstickers made and gave them away for free?

Have you givin this MB one tenth what I have?

You have givin shit, so keep your commets in your own home where you also probably give nothing.....until then SHUT THE FUCK UP!!!!!!!!!!!!!!!!!!!!

Anyone have a problem with what I say?

............................jonny

One last thing fuck face..........you ever carry a CH'er to her hotel room when shes having a kip 10?.....didnt think so!

Title: Re: Sick and Tired
Post by Drk^Angel on Aug 16^th, 2002, 8:15pm

Okay you two... Kiss and make up... No need to be fightin' and all...

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

Title: Re: Sick and Tired
Post by Not4Hire on Aug 16^th, 2002, 8:22pm

.....(quote): chill, dude.....(unquote)

adios, hermano

Title: Re: Sick and Tired
Post by debbie4278 on Aug 16^th, 2002, 8:34pm

OK. Back to Night Owl. My CH started in 8th grade. Went years with nothing like everyone. Same story as everyone. My heart goes out to you. You, I and allof us are so lucky to have each other. I am 3 weeks into an episode. Had an MRI Sat., and saw a new neuro two days ago. Wasted trip, since he was one of the ones who is not familiar with CH, and made it a point to let me know during my exam that he himself was at that moment experiencing a "migraine".

Interestingly, he wanted to take me off the Procardia I am taking because he said it is never used for CH. But I say no way. I will self medicate, because Procardia has worked for me for the last 3 episodes, (every two years). I am also taking Indomethicin this time, and am having very small shadows for the last week, that's all.

I take Zomig for the shadows. The orally disintegrating ones. The pills don't work.

To all you CH ers that don't have anything that works, please try the Procardia if you haven't already. I don't know why it works for me, but it does. My neuro in California said I am not even taking a therapeutic dose, so it can't be working. But if I try to wean off too early, the CH comes back. It does work.

Welcome to the board Night Owl. You have found some good people here.
Debbie
Raleigh, NC

PS any CHers in Raleigh with a good neuro????

Title: Re: Sick and Tired
Post by debbie4278 on Aug 16^th, 2002, 8:36pm

And do chill on the Motrin. I was doing the same thing, and my doctor told me I would kill my kidneys and end up on dialysis. Careful.

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 8:56pm

Hey, thanks for the input. I have quit the Motrin, wasn't doing much good. I don't want to be on pills, I want to try the oxygen treatment. That sounds like the best.

Title: Re: Sick and Tired
Post by debbie4278 on Aug 16^th, 2002, 9:00pm

Good luck. O2 didn't work for me.

Title: Re: Sick and Tired
Post by Drk^Angel on Aug 16^th, 2002, 9:06pm

O2 is the only abortive that works for me, but luckily verapamil is working as a preventative... I still have prolblems remembering to dose though...

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

Title: Re: Sick and Tired
Post by debbie4278 on Aug 16^th, 2002, 9:11pm

This new neuro I just saw wants to switch me from Procardia to Verapamil. But I don't think I should if the Procardia is working. I would like to stop the Indomethicin, but I am afraid to. The shadows are less with it. I was trying to see about CPH vs. CH.
Personally I think they are the same.
Deb

Title: Re: Sick and Tired
Post by Drk^Angel on Aug 16^th, 2002, 10:20pm

CPH attacks don't last as long, and you get more of them per day... But they're both TACs.

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

Title: Re: Sick and Tired
Post by gtarman on Aug 16^th, 2002, 10:24pm

NightOwl-
I barely made it thru high school and had NO physical problems, so I can only imagine what you go thru. Your peer group is probably not the most sympathetic bunch either; kids can be really cruel to someone who is different; they don't need much excuse to rag you. You must be one tough hombre, and that's what it takes to survive CH. The hardest part is coming to the realization of what it is, and that most folks just can't - or won't - understand.
Everyone has made the point sufficiently that you need to get a neuro and find a med that helps. But know this, too: your life IS worth living, there WILL be a tomorrow that's better than today, and the people here CAN relate because we live with it too; and we're here to listen, advise and comfort, anytime.
Hang in there, pardner, we're with you! :)

Title: Re: Sick and Tired
Post by Night_Owl on Aug 16^th, 2002, 10:38pm

Thank you Gtarman. Yes, people can be cruel. I get along ok though. Not much of a social butterfly, have friends here and there. It's cool.