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(Message started by: Reese on Mar 24th, 2004, 2:36pm)
Title: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 2:36pm
Whats up ppl, lately I read about someone who suffered with CH for years and finally found out it was a tumor or brain cancer,which got my fears rolling. I have been getting CH for about 6 years now. Almost textbook cluster h/a's. My cycles come and go on a irregular schedule though,no spring or fall tendencies. I usually have a cycle for about 1-4 months followed by a couple months of zero pain. This last cycle seems to have lasted about 4 months now,it gradually peaks and then diminishes but then starts right back again. I go weeks of kip1 or 2's up to a few days of 8-10's and then gradually back down to shadows,but then they start rising back up again slowly. Sometimes I go days with no pain,then a 8 or 9 jumps in for a day and then goes back to shadows or no pain for a week or so. Triggers like alcohol do play a role in my h/a's but sometimes get hit even when havent drank in week or two. I guess I just want some reassurance that I dont have brain cancer but just good ole' cluster headaches. I have a neuro who diagnosed my CH,but I have never had a CT scan or MRI,doc says its been going on so long it would not be brain cancer,just cluster headache. BTW,please dont recommend CTscan or MRI,just tell me Im not alone in this sporadic cycle of off and on all year round. Thanx
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 2:45pm
I should have mentioned that I only get 1 h/a per day(not as predictable as few years ago),rt.sided pain extending from temple to back of neck(constantly rolling my head around to ease pain),they last 30 mins.-2 hours,and oxygen aborts most of them. Signed,Paranoia
Title: Re: ever wonder of brain tumor?
Post by Melissa on Mar 24th, 2004, 3:13pm

Quote:
lately I read about someone who suffered with CH for years and finally found out it was a tumor or brain cancer,which got my fears rolling

Could you please point out where it was you read this?  I'm curious to read it myself.

Quote:
I just want some reassurance that I dont have brain cancer but just good ole' cluster headaches

Ask your neuro to have an MRI or MRA done.

Quote:
BTW,please dont recommend CTscan or MRI

How can you be reassured if you do not get one done??

Quote:
Sometimes I go days with no pain,then a 8 or 9 jumps in for a day and then goes back to shadows or no pain for a week or so.

Are you episodic or chronic?  Are you on any preventative meds?  I only ask these questions because you state you go PF for days at a time.

Thanks,
:)mel

P.S. cancer and brain tumors run in my family.
Title: Re: ever wonder of brain tumor?
Post by 9erfan on Mar 24th, 2004, 3:15pm
I'm not sure why you don't want us to recommend CT or MRI.

That would be the obvious choice.  I can't imagine a Neuro diagnosing cluster h/a's without having eliminated other ailments first with an MRI and Cat Scan.  I mean, everytime I have a seen a new Dr. over the years the first question out of their mouth is what tests I've had.

Personally, I think your Dr is acting irresponsibly by NOT doing the necessary tests.
Title: Re: ever wonder of brain tumor?
Post by aprilbee on Mar 24th, 2004, 3:25pm
*bump*  

I've had several CT scans just to be "safe"  They're expensive, but worth the easment of worry...
Title: Re: ever wonder of brain tumor?
Post by Tachometer on Mar 24th, 2004, 3:28pm
This may sound kinda...I dunno...crazy...but well, there have been times when I actually wished it was a tumor.  At least...an operable tumor that could be removed.  Then I could go under the knife, have it removed, and never get one of these things again.

But that sort of thinking only occurs at...certain times.

Bleah.
Title: Re: ever wonder of brain tumor?
Post by Melissa on Mar 24th, 2004, 3:33pm

Quote:
This may sound kinda...I dunno...crazy...but well, there have been times when I actually wished it was a tumor.  At least...an operable tumor that could be removed.  Then I could go under the knife, have it removed, and never get one of these things again.


I have felt exactly the same way.  Also, I think you'd be surprised to know there are many clusterheads that wish this was the case.
Title: Re: ever wonder of brain tumor?
Post by john123 on Mar 24th, 2004, 3:35pm

I typed brain tumor and cluster into google and found the link below, it says most tumor-related headaches are migraine-like and a very small percentage are cluster-like.  Looks like it is from a college neurology program, take it for what it's worth...

http://www.upstate.edu/neurology/haas/hptumor.htm
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 3:41pm
OK,what the fuck?  I asked of 2 things 1) dont recommend cat or mri and 2) need some kind,any kind,of feedback that those of you thathad ct's and mri's to tell me "youre probably ok it sounds like just a CH to me" ,even call me a little fuckin baby worrying ass homo,I dont care,just help releive some of my anxieties at the moment.
Title: Re: ever wonder of brain tumor?
Post by john123 on Mar 24th, 2004, 3:43pm
little fuckin baby worrying ass homo

does that help?
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 3:44pm
yup
Title: Re: ever wonder of brain tumor?
Post by Melissa on Mar 24th, 2004, 3:46pm
Sorry Reese, but I CAN'T tell you that you don't have a fucking tumor.  We are not doctors here.  Don't go asking us for help thinking you're only gonna hear what you want to hear.

Cripes
Title: Re: ever wonder of brain tumor?
Post by john123 on Mar 24th, 2004, 3:48pm
whay didn't you say so in the first place?   ;;D

a little more info, this could be the problem

http://www.upstate.edu/neurology/haas/hpsxex.htm
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 3:51pm
holy shit, a person with a "worrying" disorder comes in and asks you not to scare the balls off him and you immediately do what he asked you not to. Am I wrong for gettin pissed? You be the judge. I wanted some thought releif by posting this. thanx
Title: Re: ever wonder of brain tumor?
Post by JDH on Mar 24th, 2004, 3:52pm
OK you little fuckin baby worrying ass homo  ;;D
I've had several CAT scan's and MRI's over the years and like the others have told you, your Dr isn't going to be able to tell you anything definite w/out knowing what's going on in there.
Yeah you're probably OK and it's probably CH's but why wouldn't you want to know for sure?  [smiley=huh.gif]
I agree with 9erFan in thinking that your Dr is acting irresponsibly by not doing these test.

Jim
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 3:56pm
thank you john123, the link you provided was just what I wanted:  "In adult patients with recurrent headaches that have been defined as migraine...with no recent change in pattern, no history of seizures, and no other focal neurologic signs or symptoms, the routine use of neuroimaging is not warranted" (The Quality Standards Committee of the American Academy of Neurology, 1994). "   I actually feel better already,thank you  
Title: Re: ever wonder of brain tumor?
Post by JDH on Mar 24th, 2004, 3:58pm

on 03/24/04 at 15:51:50, Reese wrote:
holy shit, a person with a "worrying" disorder comes in

Ummm, this is a Clusterheadache website not a "Worrying disorder" site  ;)


Quote:
Am I wrong for gettin pissed? You be the judge.


Yeah you're BIG TIME wrong! As far as I know there are no Dr's posting on this MB so if you want advice like that, see a Dr.
Me thinks you're just gonna hear what you wanna hear anyway.

Jim
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 4:02pm
laughing out fuckin loud at the 2nd link. that was good,but your 1st link I really thank you for. Ya like the little fuckin baby worrying ass homo line,huh?  :D
Title: Re: ever wonder of brain tumor?
Post by jonny on Mar 24th, 2004, 4:07pm
Who's the beeoch now?
Title: Re: ever wonder of brain tumor?
Post by aprilbee on Mar 24th, 2004, 4:15pm

on 03/24/04 at 16:07:21, jonny wrote:
Who's the beeoch now?


[smiley=spit.gif]

good one...

Reese, we are all really trying to help, really.... next time you ask people to not suggest anything, I will respect your wishes... here's hopin' for PFDAN to ya!   ;;D
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 24th, 2004, 4:23pm
no harm done,didnt mean you aprilbee ;)  jonny, Im the master(bating) beeoch now according to john123!!  ;;D
Title: Re: ever wonder of brain tumor?
Post by john123 on Mar 24th, 2004, 4:28pm
errr...just to clarify, I did not actually call you a masturbating beooch.   :o  

But...

Definitely bice to see you have a good sense of humor.  :)
Title: Re: ever wonder of brain tumor?
Post by BlueMeanie on Mar 24th, 2004, 5:09pm
Anyone who gets CH's should always be checked out  by a Neuro to eliminate possiblilites of any tumors & such. CATScan/MRI etc. I know you didn't want to hear that, but it's a fact.

Your doc is probably right, but I can't believe he wouldn't want to check it out. My doc makes it manditory every 5 yrs. Sometimes brain tumors won't show up for long periods of time.

The ones that did have brain tumors instead of CH's are probably dead now.
Title: Re: ever wonder of brain tumor?
Post by 9erfan on Mar 24th, 2004, 6:22pm
Reese,

Not only are you being a "worrying baby" but you're just being an ass in general.  If you want people to only post what you WANT to hear, you should try another site.  We are clusterheads!  Clusterheads don't sugar coat anything!  

Why would you not want to get these tests to rule out everything??
Personally, like someone else on this thread, I would RATHER have a brain tumor than clusters.  The last time I had an MRI, I prayed that they would find a brain tumor.  When they told me the test was normal I burst our crying.  At least with a tumor they could operate and remove the damn thing.

Sorry you don't like our answers, but get over it.  ::)
Title: Re: ever wonder of brain tumor?
Post by pubgirl on Mar 24th, 2004, 6:32pm
Is there some gas in the air over there tonight which is making everyone evil?

Just wondering

Wendy
Title: Re: ever wonder of brain tumor?
Post by 9erfan on Mar 24th, 2004, 6:37pm
Me, evil??  Never!  >:(

I just think it's lame to come here, post your story, and then say "here's how I want you to respond".  

WHATEVER!
Title: Re: ever wonder of brain tumor?
Post by Melissa on Mar 24th, 2004, 6:38pm

Quote:
Is there some gas in the air over there tonight


Wendy, I've been wondering the same thing (without the evil part).  Like, who let the dogs out?

I know I'm being a wee bit assertive today myself, but that's only cuz I quit smoking 2 weeks ago. ;;D

Oh, and if anybody takes this post the way it wasn't intended, that's their damn problem.[smiley=tongue2.gif]
Title: Re: ever wonder of brain tumor?
Post by pubgirl on Mar 24th, 2004, 6:40pm
I was only mucking about, it wasn't directed at anyone in particular, it just seems like the board is on fire! more activity here in about 10 mins on various threads than in a whole week previously.

and more swearwords! ;;D

W

and Virginia, for what it's worth, I've been getting pretty cheesed off as well recently about people posting and either ignoring or possible not even reading the advice being given in good faith by other sufferers. Sometimes makes you want to give up :(
Title: Re: ever wonder of brain tumor?
Post by t_h_b on Mar 24th, 2004, 6:42pm

on 03/24/04 at 18:32:31, pubgirl wrote:
Is there some gas in the air over there tonight which is making everyone evil?

Just wondering

Wendy


Appears so.

I was thinking maybe it was a full moon, but no, it's not even close.

http://www.calculatorcat.com/moon_phases/phasenow.php
Title: Re: ever wonder of brain tumor?
Post by t_h_b on Mar 24th, 2004, 6:49pm

on 03/24/04 at 14:36:35, Reese wrote:
I have been getting CH for about 6 years now. Almost textbook cluster h/a's......,doc says its been going on so long it would not be brain cancer,just cluster headache. BTW,please dont recommend CTscan or MRI,just tell me Im not alone in this sporadic cycle of off and on all year round. Thanx


Your MD is right, if you had a brain tumor you'd be dead if it were cancer and non-functioning if it were benign.   No doubt.  

MRI or CT is probably useless but if you have insurance you could probably get one approved.  If no insurance you could go to the ER with a CH, give a false name, pretend like it's your first headache, and they'll do one.  Almost certainly a waste of time and money.  Useless.

There are a lot of episodic ClusterHeads.  You may very well be a perfectly normal ClusterHead, if that means anything.  Even as a chronic I go through cycles where it's worse sometimes.

Have you tried melatonin?  Research it on this site and then talk to your MD.
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 25th, 2004, 12:42pm
dont ever wish it was a brain tumor instead of CH.I recently had a buddy die at 34 from fucking brain cancer. He never did get to experience cluster headache type of pain but I had to carry his body to his grave.This is probably why Im scared and paranoid of head pain. I remember going to er few years back with a k10 and the doctors there also said no need for cat because they have been going on for so long. I just ignore posts that seem to try to egg on a battle,like some replies here. Now I know everyone here has not had these expensive tests done and maybe just wanted to hear from them that I am just paranoid and relax my fucked up state of mind.
Title: Re: ever wonder of brain tumor?
Post by pubgirl on Mar 25th, 2004, 1:40pm

on 03/25/04 at 12:42:18, Reese wrote:
 Its unfortunate that some of you have tumors or cancer cells growing in your heads that the ct scans and mri missed,but dont worry,it kills you pretty quickly.



Thanks Reese. Kind of you to be so considerate as to tell us this.

Wendy
Title: Re: ever wonder of brain tumor?
Post by Filbert on Mar 25th, 2004, 1:56pm
Reese if the last part of your last post was supposed to be funny-sorry its not!! It's just offensive! At least one regular poster onthis board as a best friend suffering right now.Hope you're proud of yourself!
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 25th, 2004, 2:00pm
Unfortunately pubgirl,I should have just emailed those who I wanted to read that line instead of here but,BUT, I came here,where people are dealing with the same situation as me, hoping to ease my fucked up pattern of thinking at that time. I get cluster headaches,not migraines,not tension,nor John Doe's "worst headache in the world". I get pain in my head,that to non CHers is uncomprehendable. [smiley=huh.gif]  I was just feeling like shit yesterday and 8 out of 10 people posted as if they wanted to intentionally fuck with a mans emotion(not that I have emotions) ;;D   As someone said,they wish they had a brain tumor,an explanation,but it was not there when they did these expensive tests. Why do  some of you have to start this shit here? Dont bother motha fuckin me cuz it aint worth shit!! To the nice peoples: you see my point.
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 25th, 2004, 2:07pm
FUCK!!!  Can I somehow edit that last line in that post? Its not fair for most to have to read what I meant to be directed at only certain people. "Me thinks you're just gonna hear what you wanna hear anyway." and "Not only are you being a "worrying baby" but you're just being an ass in general"  Fuck off
Title: Re: ever wonder of brain tumor?
Post by pubgirl on Mar 25th, 2004, 2:13pm
Reese

I take it you haven't read "How to make Friends and Influence People" then.

You are doing a quite marvellous job of upsetting almost everyone here with nearly everything you post. Impressive! Even I didn't manage to piss EVERYONE off ;;D

Wendy
Title: Re: ever wonder of brain tumor?
Post by JDH on Mar 25th, 2004, 2:30pm
Reese, take a deeeeep breathe and chill out.
We all know what you're going through and I know you don't think so BUT people are trying to help you here....YOU just don't seem to want to listen.

Jim
Title: Re: ever wonder of brain tumor?
Post by Melissa on Mar 25th, 2004, 2:31pm
Hey Reese, you see that little icon in your message in the upper right corner that says "Modify"?  I suggest you use it from now on. :)  

Oh and BTW, next time you don't want to hear someones opinion on a certain subject, give a damn reason WHY you don't want to hear it.


p.s. i'm sorry about your friend.
Title: Re: ever wonder of brain tumor?
Post by 9erfan on Mar 25th, 2004, 2:37pm
You might want to take some anger management courses for that temper of yours.
Get over it.
Title: Re: ever wonder of brain tumor?
Post by KarynG on Mar 25th, 2004, 2:52pm
On the night of my first cluster headache, I had a spinal tap in the E.R.  During the weeks that followed I had many tests including an MRI and an MRA which were both normal.  I also cried when the neurologist gave me the news.  I didn't want to die but I did want to have something that could be fixed even if it meant brain surgery.  I still do.  Funny thing, the neuro said if I had a brain tumor the spinal tap might have killed me, something about the pressure or something.  Also isn't there a saying that most people with headaches don't have brain tumors and most people with brain tumors don't have headaches? (OMG I used the headache word, be nice to me people  ;;D)  Anyway, hope that helps.
And Melissa, congratulations on quitting smoking!
Karyn
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 25th, 2004, 3:20pm
as Melissa said:"Oh and BTW, next time you don't want to hear someones opinion on a certain subject, give a damn reason WHY you don't want to hear it. "  I thought I did? I specifically did ask you not to post recommendations for ctscan or mri's. Ok forget about it.  Melissa,my friend passed on 2 years ago,not recently as I posted,but it still seems like yesterday. I think you see my point as to cryin out after not wanting to hear about procedures that were NOT performed on me.
Title: Re: ever wonder of brain tumor?
Post by cathy on Mar 25th, 2004, 4:58pm
IMHHO....I think you should get an MRI and a Cat scan done to be positive that it is CH's you are suffering from, im surprised noone has suggested that personally....still life is queer these days...
Title: Re: ever wonder of brain tumor?
Post by fubar on Mar 25th, 2004, 5:49pm
Reese,

I must just be stupid because I can't understand the questions you asked.  The thread it titled 'ever wonder of a brain tumor' and your post suggests you're worried about the possibility of a brain tumor, AND your friend died of a brain tumor so this is why you are concerned.  yet you specifically ask people NOT to suggest a diagnostic test to check it out.  What gives?  Are you saying, in effect, "I know it's not a brain tumor,  but the worry of it get's me anyway, so I'm looking for words of encouragement to calm these fears I know to be unfounded?"  If that's the case, then I guess I could understand it, but I just can't tell.  The hostility you have encountered is based in your seemingly contradictory and perplexing question/request .

You also went off on people for causing worry when you came here to relieve your worry, and basically said they should have known better because you have a 'worry disorder'?  When did you tell us that?  Were we supposed to figure that out by your signature in the second post?  ('paranoid')  If so, I don't think you gave enough indication that this was a problem.

Bottom line (for everybody) is that if you post a short question that has little context, expect answers that aren't in line with your expectations.  Your expectations are way too high.  If you want intelligent answers, ask intelligently framed questions.

this isn't an attack, just trying to sort this out.

-Fu
Title: Re: ever wonder of brain tumor?
Post by 9erfan on Mar 25th, 2004, 6:04pm
As usual, Fu is the voice of reason!  :)
Title: Re: ever wonder of brain tumor?
Post by t_h_b on Mar 25th, 2004, 6:04pm
No, it's still not even close to being a full moon.

http://www.calculatorcat.com/moon_phases/phasenow.php

[smiley=moon.gif]
Title: Re: ever wonder of brain tumor?
Post by jonny on Mar 25th, 2004, 6:12pm
Ok, I called my friend the shrink again and heres what he said.


Jonny, your little buddy, Reese appears to have some very real psychiatric problems including more than one personality disorder and appears to be manic/depressive and in the manic phase right now.  


Some of the general statements he's made haven't made a bit of sense.  He also seems to be having problems with memory as well as comprehension.  He hasn't paid any attention to anything anyone's said on a rational level and is in a total emotional state of functioning and response.

All of the attention he's getting from everyone is accelerating his dysfunctional behavior.

I don't know of a solution but he seems unstable enough to do something rash when he crashes.
................................................................................

Damn!!, thats two for two for my old pal the shrink....ROTFFLMMFUBO ;;D

.....................................jonny
Title: Re: ever wonder of brain tumor?
Post by t_h_b on Mar 25th, 2004, 6:35pm
ROTFLMYBO2
Title: Re: ever wonder of brain tumor?
Post by 9erfan on Mar 25th, 2004, 6:40pm
LMAO Jonny!
Title: Re: ever wonder of brain tumor?
Post by broomhilda on Mar 25th, 2004, 8:10pm
LMAO Jonny, spilled my coffee!!!!!!!

Andrea
Title: Re: ever wonder of brain tumor?
Post by Kevin_M on Mar 25th, 2004, 8:35pm

on 03/24/04 at 14:36:35, Reese wrote:
I guess I just want some reassurance that I dont have brain cancer but just good ole' cluster headaches.


Who did you expect was capable of "reassuring" you that you have clusters and not brain cancer.

Ok, you have clusters, but what the f*ck do I know.

If you're going to self diagnose with an internet link and happy with that, fine I guess.

What fubar says too.

Kevin M
Title: Re: ever wonder of brain tumor?
Post by Mark C on Mar 26th, 2004, 4:02am
................never mind.  :-X
Title: Re: ever wonder of brain tumor?
Post by sandie99 on Mar 26th, 2004, 5:16am
Reese,

every time I have a headache, CH or other.

But in my case, it's not because I would be that afraid that I'd have one. My doc informed me once I was first dignosed that it's not brain tumor.

:'(You see, my dad died in April 1997 - brain tumor. My uncled died in 1987 (April, too) and that was brain tumor, too. So, I do think about it every now and then. And now, as both my birthday (April 14) and the day of my dad passed away (4 days after my bday) are getting closer, I think about it all the time.

Best wishes & PF days,
sandie99

Title: Re: ever wonder of brain tumor?
Post by Charlie on Mar 26th, 2004, 6:41am
I had a neurologist who pretty much took one look at me after my describing the headaches, and said: “You have cluster headaches." He said tests weren't needed. He knew my history.......granted this was something like 33 years ago. He was different but he taught me the technique which got me back a good chunk of my life.  These tests weren't used back then. I had my only Cat scan in the early 80s. Nice to know that there was nothing in my head......no surprise..... :)  

I thought I might have had a tumor for a couple of days but I was lucky. Not many get a correct diagnosis so quickly. It’s okay for a clusterhead to be cranky, but be try to be careful.

Charlie
Title: Re: ever wonder of brain tumor?
Post by Reese on Mar 26th, 2004, 2:45pm
omfg,I probably sound so confusing because I am usually drinking when i get on this internet. Yes,I am an alcoholic.In the beginning of this thread I thought I made complete sense as asking not to frighten me with all the tests that should have been done. Unfortunately you guys said fuck you reese,Im gonna tell you exactly what you did not want us to say. What kind of shit is that? As for the manic depressive shit,joe dirt,thats a bunch of bullshit. I now realize these brain cancer concerns were only irrational thoughts and I should just deal with these lil girl thingy cluster headaches as thats what it is. You ppl are fucking like sharks in a swimming pool. Go ahead talk more shit,I need the support.
Title: Re: ever wonder of brain tumor?
Post by jonny on Mar 26th, 2004, 3:26pm
http://www2.incredimail.com/contents/animations/ocean_life/sharkswim150120clr_thumb.gif

......................jonny ;;D
Title: Re: ever wonder of brain tumor?
Post by echo on Mar 26th, 2004, 3:38pm

on 03/26/04 at 14:45:55, Reese wrote:
Go ahead talk more shit,I need the support.



Crap
Poopie
Turd
Crapola
Defication
Doggy lawn art
Dingle Berry
Laundry stain
Undie brownie
loaf
Processed food log
SHIT

Hope that helps. ;;D
Title: Re: ever wonder of brain tumor?
Post by fubar on Mar 26th, 2004, 3:57pm
Thank you for your lucid response Reese.

Being married to an alcoholic for 15 years (now ex-wife) has led me to a place where I can completly understand your total lack of any common sense and your inability to READ the posts and form lucid thought around them.  Good luck with your sickness, take your fucking drunken hostility elsewhere, we have enough headaches without that shit.  Come back when you want to talk about CH.

-Fu


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