Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2002 Posts >> A Newbie Story....sad but true
        
(Message started by: kparent on Sep 30^th, 2002, 4:52pm)

Title: A Newbie Story....sad but true
Post by kparent on Sep 30^th, 2002, 4:52pm

Hi All,

I am new to this board as well as a new cluster headache suffer. They started about 2-3 months ago. Now I always have a headache. Not a bad headache but a headache, 24/7....but, when my headaches flair up, I just want to die. A ray of sunshine feels like a stream of fire burning through my head. Any little noise is amplified by 100. I work at home because I can't stand to be out during the day with all the noise and light. Even my laptop is a vicious creature that causes pain. My headaches have caused me to have seizures, memory loss and depression.

So why doesn't my dr. believe me??? Sure the Dr gave me Fioracet but that only makes a small improvement. I don't want to be on drugs the rest of my life, I want a cure for this!!! Why don't I see another Dr. you ask??? I wish!!! But I am part of a small HMO where there are few qualified physicians. My dr thinks that it is just caused by stress and they will go away. My husband tries to understand, but he can't. All that he can do is put a cold cloth on my head and take the children (a pre-schooler and an infant) to a playground or a walk around the block. I have another appointment on Friday. I have said and done everything I can to make her understand that these headaches are ruining my life, the life of my children and the life between me and my husband.....I have done everything except cry and I'm not far from that at any given moment of the day. :'(

Well, thank you for listening to me.......I'll talk to ya later.......

Title: Re: A Newbie Story....sad but true
Post by BobG on Sep 30^th, 2002, 5:18pm

Welcome to the board. Sorry you had a reason to come looking.

A couple of your statements make me question if you are suffering from cluster headaches.
"I always have a headache"
"a headache, 24/7"
"caused me to have seizures, memory loss and depression"

To me it sounds like you have something other than clusters. Have you been diagnosed with clusters? Your doctor's statements about stress tells me he doesn't know anything about clusters.

Push the cluster quiz button on the left side of the screen. Then please let us know what the results were.

Title: Re: A Newbie Story....sad but true
Post by jonny on Sep 30^th, 2002, 5:19pm

If your Doc thinks your HA's are caused by stress why do you say you have cluster headaches?

Have you been diagnosed with clusters?

Have you takin the cluster quiz on the left side of the board?

Most of what you say about your HA's dont sound like clusters but im no Doc.

Take the quiz and let us know how you make out.

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

Not fair, Bob....you type faster ;D

Title: Re: A Newbie Story....sad but true
Post by kparent on Sep 30^th, 2002, 5:24pm

I don't know what kind of headaches I have. I have taken the quiz and it is about half/half. I have been diagnosed with stress related headaches. Which I have disagreed with since everything started. Like I said, it has only been about 2-3 months. I don't know what questions to ask, nevermind knowing where to look....lol

I don't know.....maybe I am in the wrong place. I figured who knows best about headaches then other people who have suffered long before I have.

Title: Re: A Newbie Story....sad but true
Post by 2late on Sep 30^th, 2002, 5:25pm

i agree with jonny(and that don't happen all that often...LMAO) also look at the kip scale and other catagories to the left. there's alot of non-med treatment's on this site that may help you. get back to us!!! ..........2late

Title: Re: A Newbie Story....sad but true
Post by Jim R on Sep 30^th, 2002, 5:48pm

Hi,

I agree with the other guys here - I ? whether it's CH's you have - CH's are not "all the time" - they come on fast, last varying amounts of time while the person having them is in utter agony - then leave as fast as they came. There are all sorts of other symptoms that are listed in information here and on OUCH. Light and noise don't bother all CH sufferers either....hmmm, I think you need to go to a doc and be diagnosed. Good luck. - Jim R

Title: Re: A Newbie Story....sad but true
Post by catlind on Sep 30^th, 2002, 7:13pm

kparent,

I have to question your doc on this one. Have you had a CT scan or MRI done? If so what were the results? Have you been to a neuro yet? Whether your headaches are clusters or migraines, or a brain tumor, the first step you need to make is in making your doc send you to a neuro, and get the scans done. There may be something far more involved than stress headaches.

Come back and let us know how you make out on Frid.

Cat

Title: Re: A Newbie Story....sad but true
Post by Charlie on Oct 1^st, 2002, 3:02am

One thing I look for with clusters is: Do they wake you out of a sound sleep? I think that would be an indication. If you aren't having CH, count yourself lucky but find some better help. We know headache can be horrible.

Charlie

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 1^st, 2002, 8:33am

Sorry for the late response.....

I have had several MRI's done and the dr informed me that my nerves have unusal spasms on the left side of my brain. The dr said that it could be caused by stress. The only thing I am stressed about are the headaches. I have a dream job, loving family, wonderful friends. My life (headaches aside) is quite joyful. To describe the headaches a bit: there is a constant dull pain on the left side of my head, above the ear and towards the back. When they flair up, the pain raidiates up over the top of the left side and comes back around and sits there for hours. And for the person who said I should be lucky they aren't cluster headaches? Why should I be lucky? Do you know what it is like to have an infant crying for you and you can't even go near her because you think your head is going to explode. Or to be in a meeting at work with sunglasses on? I consider myself lucky to have the support of my family and friends......not for what type of headache I have/don't have.

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 1^st, 2002, 8:40am

oops...I forgot a question.

yes, they wake me out of a sound sleep (when I finally get to sleep). They stop me in my tracks no matter what I'm doing. I don't know when the pain is coming.....It is not like they are on an internal clock. I've only been experiencing these for 2 -3 months so I don't know the signs I should be looking for but this site has helped tremendously. I don't scream or yell, that is not my demeanor. I do wrap ice cold towels tightly around my head....stick my head in ice water. I have slept in closets because they produce the best sound and light barriers. Someone even told me to stand on my head for as long as I can.....DO NOT do this......it made the headache worse!

Title: Re: A Newbie Story....sad but true
Post by Edna on Oct 1^st, 2002, 8:43am

no offense meant, but you should feel lucky that we are here trying to help you out...........AND

YES

I DO know what it is like to have an infant crying and my head hurting.........for that matter, my THREE children knew what is was also like to have MOM crying and them trying to help me out..........after having suffered with these headaches for more than 24 years....I KNOW

sad that you had come looking to us, but hoping you can understand the purpose of those here.......read the wonderful info provided and keep us informed.

WE CARE

wishing you luck,
EDNA

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 1^st, 2002, 8:53am

I think I have cluster headaches from just the research I've been doing the last month or so.

They only happen on one side of my head (left side). It lasts about 2-3 hours and then it dies back down to a "normal" headache and then comes right back within 30 min or so. I try to get away from the pain.....God only knows where I'm going, half the time, I can't see when the intensity is at it's strongest. Or sometimes I can just lie in bed and meditate (rarely does this work, but it did work once). I usually keep to myself as much as I can. I'm not a huge fan of making a spectical of myself or being the center of attention so screaming and yelling will just get everyone around me upset. That is the only time I have stress. When these headaches make my loved ones worried

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 1^st, 2002, 9:23am

Hi Edna,

I know this place has a wonderful support system. I have learned more about cluster headaches in 2 days than I did in a month researching on my own. I know you guys all know how dibilitating headaches can be, I am just so frustrated that the one person who I need to listen, refuses to. I do have an appointment on Friday to tell the dr "yes, I still have headaches and they will not go away". I will need to explain to her for the 100th time what they are like and what I do to get rid of them, blah, blah, blah.

Thank you all for listening to me

Title: Re: A Newbie Story....sad but true
Post by echo on Oct 1^st, 2002, 4:34pm

The positive side is that you have stated that you learned more here in two days than the previous years of research. This should make you a powerful force in dealing with your doctor. You will no longer be the passive "please help me doc" patient. Now it's more of the "Get your head outa your ass doc -- that won't work, this is known to work" active participant in preventative treatment. Which might lead to finding a new doc and starting over again.
Good luck

Title: Re: A Newbie Story....sad but true
Post by Drk^Angel on Oct 4^th, 2002, 4:24pm

Kick ass and take names... Hell... Don't worry about takin' names... Just kick that docs ass. If he doesn't want to believe that you are a patient, in need of medical assistance... Hit him upside the head with a steel pipe a few hundred times, then ask him if he needs some aspirin for his "headache". There's got to be a way for you to see another doc. Call your HMO... Find out if there's any other doc's you can see, even if you need to travel to another city to do so. Find out if you can file a complaint against the doc. See if you can file for special circumstances to see another doc, even if the doc is out of network, and still be covered. Get mad... Get angry... Put on some shitkickers, and kick the shit outta someone... Preferably that worthless doc. Good luck!

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

Title: Re: A Newbie Story....sad but true
Post by Margi on Oct 4^th, 2002, 4:37pm

Sorry, KParent, but I gotta agree that this really doesn't sound like clusters. Sounds more like migraine or stress headaches to me. Migraines will build and recede like that. So will stress h/a. Vision problems and the need to be quiet (motionless) are migraine traits.
From reading your other post, the one where you doc says you have chronic clusters, makes me think you need to find a new doc. Chronic clusters means 12 months of full-blown cluster attacks without more than a 2 week unmedicated pain free period. Cluster headaches also have pain free time in between attacks. Kip 0 - 10 quickly, average of an hour (or so), then back down to 0. Sounds like your doctor found the wrong website. ::)
I'd sure suggest you get another opinion from a neurologist who knows the difference between the two afflictions and one that knows that Imitrex also helps with migraine.
I hope you find relief soon.

Title: Re: A Newbie Story....sad but true
Post by jonny on Oct 4^th, 2002, 7:27pm

YOU BITCH!!!!

How dare you tell the truth, Margi.......you are mean spirited.

But I love you!!!!

Damn Meegrainers.....LOL ;D

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

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 4^th, 2002, 7:54pm

thanks Magi.....

I do have migraines that last hours and it triggers the CH. It is not stress h/a or else I wouldn't get them. I paved my life to live virtually stress free. I'm pretty easy going and not too much bothers me. The headaches and what they do to me and my family are the only thing that is stressful. And she looked it up in the offices intranet not a "web site". I don't care if she calls my headaches Christmas, as long as I get the attention I deserve. Also, I said that this was phase 2 of trial and error. Come December I may be diagnosed with something else.....who knows.....but atleast she is starting to listen to me.

Title: Re: A Newbie Story....sad but true
Post by jonny on Oct 4^th, 2002, 7:58pm

The fact that she had to look anything up on a puter to diagnose you tells me you need a new Doc,

Think about it!!!!

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

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 4^th, 2002, 8:03pm

I completely agree with you.....But the whole office does that. There is maybe about 4 GP's and the rest are specialists....Which I am waiting for the neuro to call me (sometime next week) and book another appt with him (there's only one and he's a sweetie)

They say ithat their intranet keeps them up to date with new practices and procedures.

Title: Re: A Newbie Story....sad but true
Post by jonny on Oct 4^th, 2002, 8:05pm

[quote author=kparent link=board=general;num=1033422756;start=0#17 date=10/04/02 at 19:54:10]

I don't care if she calls my headaches Christmas, as long as I get the attention I deserve.

Sounds to me youll take any diagnosis.

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

FIND A NEW DOC....Either you know what you are doing or you are a hack!!!!!

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 4^th, 2002, 8:05pm

and just to defend them.....a tiny tiny bit......They know how to diagnose a cold, broken arm and a skin rash...But they are GP's......How may of you told me that their dr's misdiagnosed them properly the first time..... C'mon.....lift those hands up.....ROTFLMAO

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 4^th, 2002, 8:08pm

Damn freakin' skippy I will, jonny!!

At least they are not telling me to lie down with a cold cloth and it will go away(which has been mentioned to me recently by an NP)!!

Title: Re: A Newbie Story....sad but true
Post by jonny on Oct 4^th, 2002, 8:12pm

How long have you been trying to find out whats in your head?

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

Title: Re: A Newbie Story....sad but true
Post by kparent on Oct 4^th, 2002, 8:16pm

Only since July......It hasn't been that long