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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Am I wrong?? 
        
(Message started by: xxxxprincess on Nov 20^th, 2006, 10:41am)

Title: Am I wrong??
Post by xxxxprincess on Nov 20^th, 2006, 10:41am

Do i suffer from cluster headaches or is it all in my head.... Hi everyone My name is Laurie and I can not explain how happy I am to find this web site... I have been suffering from these headaches for about 20 years... I a 42 year old woman and this is the first time I have ever heard the term "cluster headache" I have suffered so badly and people either didnt understand the magnitude of the pain and thought i was a sissy or else thought i was over exagerating... I dont know why they are even CALLED cluster HEADACHES.. the word "headache" doesnt begin to cover the pain in my eye and the right side of my head and face. I have been to many dr.s who all told me i had maigrains or sinus or tension headaches or allergies... I finally gave up on the drs they all kept giving me pain pills that didnt work. My head hurts so badly i bang my head against the wall, and people always thought i was being overly dramatic.. I have given birth to 2 kids and have had a few broken bones in my life and i can handle a little pain..but when these things come its like no other pain.. I have them a couple of times a day for maybe a week or so and then they go away for maybe 2 or 4 weeks and then they are back again.... So I'm very grateful to know That Im not alone .. Im getting one now so i have to go find something to hit myself with... sometimes it helps to hit my head against a wall or the floor.... does anyone else do that? Does this sound like "cluster headaches ?"" I have been reading a little about tonight but it seems like its mostly men that get them so its probably not ... although EVERY symptom i read about fits me.. I found this picture on the "wikpedia" website under "cluster headache" and its a picture of this demon thing with his fist in this guys eyeball and thats when i knew... I see that guy everytime i get a headache... I dont know how to make it so i can add him to this post but you should go look at the site becuase i will bet you know him too!!...Anyway thanks for listening

Title: Re: Am I wrong??
Post by BobG on Nov 20^th, 2006, 11:28am

Welcome to the board princess. It sounds to me that you may very well suffer from cluster headaches. Most GP-family type doctors know between zero and very little about cluster headaches. Get your doctor to send you to a neurologist that is familiar with headaches.
Cluster headaches are called that because they come in 'clusters' where the word is used like 'groups' or 'many' or 'cycles'.
Best of luck to you. Now get to reading. There's lots to learn here and you may have to educate your doctor.

Title: Re: Am I wrong??
Post by RichardN on Nov 20^th, 2006, 11:57am

Hi Laurie and Welcome to Clusterville

. . . and from your first post, it sounds like you've found the right place. Sorry you're getting hit so hard right now . . . we DO understand.

To help us help you, please take the "cluster quiz" (4th link down on the left) and let us know how you do.

Some people here are chronic (never 30 days PF without meds), and some episodic (weeks or months, interrupted by months or years of PF time). So . . . do you consider yourself chronic or episodic?

Please read the "oxygen info" link (9th down on left). I can abort most attacks within minutes if used early-on in the attack . . . inexpensive . . no side effects.

There is MUCH more. You have lots of reading to do and many questions to ask . . . here, the answers/info/caring/sharing comes from folks who truly know your pain.

Be Safe, PFDANs

Richard

Title: Re: Am I wrong??
Post by xxxxprincess on Nov 20^th, 2006, 4:03pm

Hi everyone thanks for all your help ... I added a lttle more about whats going on with my headaches to my post and I have been reading ALOT... the headache is gone for now but i'm soooo tired.. I'm scared to go to sleep because that seems to make them come sometimes... I am curious if you have ever seen the picture of the guy i am talking about.. When i have tried to describe these headaches with words i cant seem to get across to anyone how much it hurts but the picture says it all... if you go to wikpedia and type in "cluster headache" this picture comes up and thats when i knew i wasnt alone .... that other people have the same pain.. of course I'm not happy to hear that other people suffer as i do but at the same time I AM happy to hear that other people suffer as i do ... does that make sense? They hurt so much and I have never met anyone else that gets them that i just figured i must be dying.... no doctor has ever even mentioned the word "cluster headache" to me although one of them did say " well if you were a man it would be easier to diagnose this" but women dont suffer from this particular headaches so heres so percodan and have a nice day" I hate pain pills.. They make me sick and i dont like to be so "out of it " so I have just suffered through them ... I am just so grateful to know I'm not alone ...thank you soo much

Title: Re: Am I wrong??
Post by Gena on Nov 20^th, 2006, 5:23pm

I cannot believe that there are still DR's that say women do not get CH.

WHATEVER!!!!!

I was in the same boat as you just 3 short years ago; I had been misdiagnosed with everything under the sun but CH for 12 years.

Finally I got a correct diagnosis, 02 and found this site. My life has been completely turned around (for the better)

WELCOME and good reading to you.

Title: Re: Am I wrong??
Post by bothofus on Nov 20^th, 2006, 7:16pm

Hello,
I saw the pic you were talking about. I don't know how to post pics either, so maybe somebody will be along later who does.

Definitely find a doc who understands these headaches and keep some kind of diary to show them the timing and (what's the word I'm looking for) how bad they are.

Keep us posted as to how things go.
Read the links about the meds most of us have used or are still using.

Now which clusterhead on here wrote that wikipedia info? Sounds like someone here did.

Carl

Title: Re: Am I wrong??
Post by Linda_Howell on Nov 20^th, 2006, 7:33pm

Laurie,

Yes, the picture on that page you mentioned was done by one of our own here and in my opinion is the best depiction of what this condition feels like.

Until DJ started this site almost 9 years ago most of us had never talked to anyone with these HA's either. Lots of us, upon finding this site existed...cried because years of going undiagnosed, trouble explaining to people etc.

I hope you will stick around and learn all you can from here so you can educate your Dr. family and friends.

As soon a s I read what your Dr. said about not getting clusters because you were a women I wanted to scream. Please try to get another Dr. if you're still seeing him and read all the links here and come back and ask as many questions as you need to. All of us combined probably have thousands of years experience with CH. Dr.s get exactly 5 hours of training in Med school on the subject of headaches. ALL kinds of headaches, so it isn't any wonder that we have to educate THEM.

Linda

Linda

Title: Re: Am I wrong??
Post by Tar on Nov 20^th, 2006, 8:16pm

http://upload.wikimedia.org/wikipedia/commons/3/36/Clusterhead.jpg

this is the picture on wikipedia she was talking about, not a bad rendering.

Anthony
(PF for a whole day now after my last hit on Sunday that was verging on a KIP 10 at peak times and a KIP 5 for the rest of the day)

Title: Re: Am I wrong??
Post by Linda_Howell on Nov 20^th, 2006, 8:17pm

Laurie,

I just now noticed that you live in San Raphael. Us Californians are having a get together in San Diego the first week in January. Here is some of the info on it and the rest is under the "meeting and gatherings section on the board index.

Quote:

--------------------------------------------------------------------------------
Okay you western staters and especially you Californians. The meet and greet is on for San Diego. Those of you who have been to one will come back because.....you know. Those who haven't been........
1: It's not like an AA meeting.
2: It's not like a religous revival
3: It's not an Amway meeting

(As a clarifier I have nothing against any of the above!
It's a chance to sit by the pool and hang out with a bunch of people who honest to goodness understand you.

We will be arriving January 5th, Friday, checking out Sunday, January 7th. The hotel is accross the street from Old Town State Park, 2 miles from the Zoo, 5 miles from Sea World and 2 miles from the airport.

Go to www.padretrailinn.com for info on the hotel. The rate for us is $89.00 a night. To make reservations call 1-800-255-9988, tell them you are with OUCH to get the $89.00 rate. Any questions please IM or e-mail me at Jsprecco@cox.net

Guiseppi
IP Logged

This would be a great opportunity for you to meet fellow sufferers and pick our brains or just come to sit and laugh. (We do a lot of that)

Title: Re: Am I wrong??
Post by Barry_T_Coles on Nov 20^th, 2006, 8:36pm

Hi Laurie

Welcome to the best little nut house around, sad you had to be misdiagnosed for so long but your now among people who do understand.

Read as much as you can from the links to the side & ask all the questions you want, that’s what we are here for.

If you want to know how to get that pic across I will PM you with the instructions.

Cheers for now & here’s the pic.
Barry

http://upload.wikimedia.org/wikipedia/commons/3/36/Clusterhead.jpg

Title: Re: Am I wrong??
Post by goof1031 on Nov 20^th, 2006, 8:49pm

Call me blonde, but I was trying to get the pic on the reply but couldnt figure it out. Must be the CH turning my brain to mush. I also tried to post my picture on my profile and had zero luck. I know some one out there can help me. ;;D

Title: Re: Am I wrong??
Post by Jonny on Nov 20^th, 2006, 8:50pm

That picture was drawn by a member of this family, "JD"

He has been MIA for a few years and I gave the ok for wikpedia to use the picture.

Title: Re: Am I wrong??
Post by chewy on Nov 20^th, 2006, 10:14pm

Welcome aboard Princess !

Quote:

I gave the ok for wikpedia to use the picture.

::)

Title: Re: Am I wrong??
Post by xxxxprincess on Nov 21^st, 2006, 3:00am

Hi everyone...I am just so overwhelmed with how wonderful you guys are.. Its so awsome to find people who understand.. all these years I felt so ALONE with these things.. Its hard to call them " head aches" because everyone gets headaches sometimes but these are so different... and I just have to thank you again.. I was writing my will the night i found this site.. It was right after another really bad one ( the 3rd one of the day) and It had been going on for 6 days straight so in between headaches i decided i just couldnt take the pain anymore and since i was sure i was dying from some kind of tumor or something anyway it was senseless to keep living since there was something VERY wrong with me. I kept praying that the next episode would be the one that ended it for me but i kept on living through them until i didn't WANT to live through them anymore and I started making difinite plans on how to end it .. and somehow i stumbled onto that picture and that picture led me to this site so... I just want you all to know that ALL of you together saved a life ... mine ... and I thank you... for giving me hope and strength and courage... just to know that other people believe how bad it gets.. So im going to take the quiz thingy and I let you know what the results say.. Sorry I have been rambling .. thanks for listening.. ps .. one more thing .. sometimes when they get really bad i bang my head on the wall or the floor and I was just wondering if anyone else has ever done that.. I end up with bruises on my forehead and then i look like some kind of crazy person but it seems like it hurts so much i cant help it and i have to do somethinng or Ill totally lose it ..so if anyone has ideas on other distractions i would love to hear them.. I have tried meditation and deep breating but i cant sit still long enough for it to work ( actually it seems like i cant sit still at all when its happening ) is this normal? Ok im going to do some reading now so i dont ask a bunch of dumb questions... thanks again

Title: Re: Am I wrong??
Post by sandie99 on Nov 21^st, 2006, 8:18am

Laurie,

warm welcome to ch family! :)

I'm so sorry that you're suffering. But I'm glad that you found your way here. You'll find lots of information and support right here. Vent any time you want, we're here for you. :)

Best wishes & PFdays,
Sanna

Title: Re: Am I wrong??
Post by georgej on Nov 21^st, 2006, 9:11am

Welcome, Laurie.

No, you're not the only one who can't sit still and who bangs her head. It's quite common, especially in attacks that are higher in intensity.

Do you find that you have a panic reaction when getting hit? If so, that is also very common, and a natural reaction, I think. It's much easier said than done, but if you make a deliberate effort to control your reactions, it can make a difference in what you experience, particularly during hits that are lower in intensity.

Best wishes,

George

Title: Re: Am I wrong??
Post by Gena on Nov 21^st, 2006, 9:15am

on 11/21/06 at 03:00:14, xxxxprincess wrote:

sometimes when they get really bad i bang my head on the wall or the floor and I was just wondering if anyone else has ever done that.. I end up with bruises on my forehead

..so if anyone has ideas on other distractions i would love to hear them..

i cant sit still at all when its happening ) is this normal? Ok im going to do some reading now so i dont ask a bunch of dumb questions... thanks again

I have been known to bang my head :-/ I have ended up with some pretty big goose eggs.

Once just this last cycle, we have a waterbed frame that has one of those heavy wood book shelves a headboard, I keep sitting up and throwing my head back with my whole body to try and knock my self out. Good thing my husband was there to help.

We have all done some crazy stuff at one point or another to try and distract from the pain.

For me sitting still is very hard, sometimes my husband has to keep pushing for me to stay on the 02 because I will just start pacing, rocking and head banging and forget that I was doing the 02.

Title: Re: Am I wrong??
Post by Guiseppi on Nov 21^st, 2006, 10:21am

Not only is what you're describing normal, you're a poster child for cluster head ache symptoms. I've dented the drywall in my house when I've missed the studs while doing the head pound, my personal favorite is the cool tiles on the bathroom floor, you can press your cheek against them in between the slamming!!!

That being said, get yourself some oxygen, learn how to use it, (reading links on the left), I suspect it will become your new best friend. And i know Linda already gave you a nudge but consider coming to the meet and greet in january in San Diego. You will learn more in a weekend then 10 years of neuro visits I promise you. That and some of us are okay to hang out with !!!

Wishing you a little pain free time...soon!

Guiseppi

Title: Re: Am I wrong??
Post by briantrudeau on Nov 21^st, 2006, 4:45pm

Welcome Princess
Sorry you have to be here, but it is the best place to be since it seems sometimes that nobody understands besides cluster sufferers on how bad things can really be, my favorite spots to bang my head are the shower walls or bathroom floor. Had company over last weekend and was hit by a hell of a attack I retreated to my garage with my o2 and one came out to check on me and could not believe what they were seeing, they told my wife she needed to take me into ER and she told them thats how he looks everynight. Sometimes it is good to show others I think just to prove that you are not full of crap,
Great site for you to seek answers to any questions.
Brian

Title: Re: Am I wrong??
Post by lskilly on Nov 21^st, 2006, 8:22pm

Welcome and sorry you are among us Clusterheads.

At least your hubby hasnt found you with your head stuck in the freezer sound a sleep. Thank God my wife found me before I got freezer burn.

Skilly

Title: Re: Am I wrong??
Post by chopmyheadoff on Nov 23^rd, 2006, 8:45am

warm welcome princess - your post rings so true to me and so many others on here im sure !!

i cried for a couple of hours when i realised i wasnt alone. i thought i was going mad , or some kind of pu55y for not being able to handle these "migranes" i was having.

anyway, the key is getting a neurologist who will oficially diagnose you. then you can start getting the help that is out there (medicine wise).

most find that conventional painkillers (even really strong ones) dont do anything except make you feel spaced out. but there are drugs which can help you.

i had given up hope until i found verapamil which i now swear by and an pretty much pain free.

good luck and remember, the doctor works for you, print out all the info you think is relevent to you and go get him !!!

Title: Re: Am I wrong??
Post by roy21302 on Nov 23^rd, 2006, 10:13am

Princess,
I am so glad that you have found this board. Reading your post has just reduced me to tears, the thought of you going so long without a proper diagnosis, I remember what it was like when I had no idea what was going on. I was lucky my DR had a friend he played golf with and he sent me to see him, within 5 minutes he told me I had CH. I felt a weight hadf been lifted off me and the wife just knowing. Please keep looking till you find a Dr who can lift the weight off you and your family. Everyone here will be ready to help all they can, just ask away, and they will also be sending your vibes for some PF time, good luck stick around Cheers ;)Roy