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Topic: Hi everyone! (Read 418 times) |
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Daredevil_Girl
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Hi everyone!
« on: Jun 22nd, 2004, 4:18pm » |
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Hey everyone. My name is Ashley, I just turned 19 recently in May. I have had cluster headaches since I was 18 and right when I started my freshman year in college. I have went through all odds to find a way to stop the pain because apparently my cluster headaches were different than the "usual" ones. Mine the pain never went away, it was a constant cluster headache. So I know what you all are going through. I've had every type of procedure done to figure out what was wrong with me to shots to the back of the head, spinal taps, over fifty shots in my body at once, medications you name it. But they did find a cure to break the constant pain, it is a treatment called Depkon, knocks yah for a loop but it really helps. Now I get my clusterheadaches once a month if that.
But I read about this site in a paper and I wanted to join. Having these cluter headaches has changed my life greatly. It is very hard for me to find a boyfriend now "as if it wasn't hard before lol!" because they don't understand what happens to me and they believe I am just making up excuses not to see them. And also I know what it does. Plus there is more to my cluster headaches than just that, I also found out that I have a brain tumor as well. So I just thought this would be a nice place to go and chat with people.
A little bit about me.....
I am planning on being a crime scene investigator and yes I love csi las vegas but not miami. I am working for the ada p.d. as their dispatcher and I am also in training to be an emt-basic. So my life is pretty stressful now and my headaches think they can come back but luckily I've had enough energy drinks on hand that I can just pop one open and drink one to stop it.
I go to Ohio Northern University here in ada as well. I will be a sophmore this year.
If you want to know more about me, here are my screen names
aol-CSIgirl013
yahoo-Daredevil_Girl013
msn-a-beery@onu.edu
I cannot say when you will catch me on there cause right now I am doing constant work, but you can always leave me a message or email me!
I hope to hear from you all soon!
Ashley
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The Girl Without Fear
It can't rain all the time.~The Crow
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jonny
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on Jun 22nd, 2004, 4:18pm, Daredevil_Girl wrote:| . Now I get my clusterheadaches once a month if that. |
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Meegraine.
..............................................jonny
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don
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Quote:| But I read about this site in a paper and I wanted to join. |
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Which paper would that be?
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Kris_in_SJ
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Re: Hi everyone!
« Reply #3 on: Jun 22nd, 2004, 9:08pm » |
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Hi,
I think if you look at other posts (like the one below) you'll find that maybe you don't have what your doc said you have. Your symptoms don't even come close to those of CH. Please follow the links at the side and read up. Believe me, you don't have Clusters.
Kris
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Woobie
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Re: Hi everyone!
« Reply #4 on: Jun 22nd, 2004, 9:17pm » |
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Hello
It doesn't sound like clusters to me. I dont think there's such a thing as "constant" cluster headaches... I dont think one could live with such a thing.. death would surely be in order.
It sounds like a migraine to me......... but who am i?
I'm sorry you're in pain - either way.
maybe find another doctor?
you can also go to www.headachesupportgroups.com they cover ALL headaches... there's a message board there.... and a chat room.
hope you find what you need...
tina
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| « Last Edit: Jun 22nd, 2004, 9:19pm by Woobie » |
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Prense
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Re: Hi everyone!
« Reply #5 on: Jun 22nd, 2004, 9:46pm » |
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You are more than welcome to hang around and participate in this board, but as the others have elluded, you probably do not have CH. CH is definitely not a once a month thing. They also tend to average 15 min - 3 hours (at most). You really gave us no other symptom information other than duration.
All head pain sucks...hell, pain in general sucks. There is absolutely no pain like that accompanied with a CH attack. Please, for yourself, get a 2nd opinion of your condition. It is not safe to treat other head pain conditions as CH. I do not know what is causing your pain... If indeed it is not CH, consider yourself extremely lucky. That is not to say that your condition can be "cured" or even treated, but the ride probably wouldn't be as bad.
There are numerous sites devoted to different types of headpain. I would suggest researching your symptoms to give you an idea of what you are probably suffering from, then visit a different doc for a diagnosis. Researching first will allow you to know if the new doc is worth a crap or not.
Good luck!
Chris
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mynm156
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Re: Hi everyone!
« Reply #6 on: Jun 22nd, 2004, 11:02pm » |
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Hi Ashley,
Welcome aboard. I am very sorry that you are one of us. You symptoms do sound more like Migraines than CH yet this BEAST never surprises me anymore. Stay around and you will find you have a new family cause when that pain comes noone in the world understands like your brothers and sisters in pain will here.
Good Luck and GOOD VIBES
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Daredevil_Girl
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Re: Hi everyone!
« Reply #7 on: Jun 22nd, 2004, 11:45pm » |
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Alright the paper is The Blade it is a toledo paper.
And I have seen several doctors, seven to be exact. All of them said cluster headaches, I have a very rare form of it, and yes I wanted to kill myself but I didn't. I had a very good team of doctors that did the best they could to keep me in the smallest amount pain possible. I saw a specialist that works at the cleveland clinic and they even confirmed it. I am that one in a million case that gets the very rare form.
And I have every sign for it, my pain was always in the right eye, it was a blinding pain I would literally go blind for a few moments. My eye sight dropped down from 15/20 to 25/20 and my eyes changed literally. The black part of my eye would either be so large it took up my whole eyeball or so tiny you couldn't even tell it was there. I earned the name daredevil because I could see soundwaves. And my doctor confirmed that people could sometimes see it. But I do have cluster headaches, and I know the other term for them, suicide headaches, the worst pain any human being can feel. And I couldn't concentrate, I couldn't do much of anything. I just wanted to sit in the dark, if I moved it hurt, if I even tried to look at something in the dark it hurt.
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Prense
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Re: Hi everyone!
« Reply #8 on: Jun 23rd, 2004, 10:17am » |
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on Jun 22nd, 2004, 11:45pm, Daredevil_Girl wrote:| I have a very rare form of it |
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Me too, it's called chronic...
on Jun 22nd, 2004, 11:45pm, Daredevil_Girl wrote:| And I have every sign for it, my pain was always in the right eye, it was a blinding pain I would literally go blind for a few moments. My eye sight dropped down from 15/20 to 25/20 and my eyes changed literally. The black part of my eye would either be so large it took up my whole eyeball or so tiny you couldn't even tell it was there. |
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This is not every sign for CH...
on Jun 22nd, 2004, 11:45pm, Daredevil_Girl wrote:| I just wanted to sit in the dark, if I moved it hurt, if I even tried to look at something in the dark it hurt. |
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Exact opposite of CH...
It is apparent that you seem dead set in your diagnosis. Learn now, or learn later...docs are not the be all end all. Here are some symptoms to CH: Inability to sit still, tearing of the eye (affected side), miosis, runny/conjested nose (affected side), 1-8 attacks per day, duration-15 minutes to 3 hours, nocturnal attacks, sudden on-set.
I would at least take the cluster quiz on the left and see what it says.
It is impossible to diagnose chronic cluster headache during the first year based on the IHS criteria. That is the only "rare" form of CH that I know of.
Good luck!
Chris
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thomas
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hmmmmmmmm food for thought, who would know more about ch; a highly educated headache specialist who has spent maybe 1-2 hours total on studying ch, or some one who has spent oh say 10-12 years of their life researching it, because it truly does consume and affect their life. Just something for everyone to think about.
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Prense
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Re: Hi everyone!
« Reply #10 on: Jun 23rd, 2004, 11:49am » |
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I was gonna say something similar, but figured we all knew that anyway.
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Margi
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Re: Hi everyone!
« Reply #11 on: Jun 23rd, 2004, 3:10pm » |
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on Jun 23rd, 2004, 10:31am, thomas wrote:| hmmmmmmmm food for thought, who would know more about ch; a highly educated headache specialist who has spent maybe 1-2 hours total on studying ch, or some one who has spent oh say 10-12 years of their life researching it, because it truly does consume and affect their life. Just something for everyone to think about. |
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VERY well said, Thomas.
Daredevil Girl, I'm sorry that you're in pain and i'm sorry to see that you've been led down the wrong path with regards to your diagnosis.
You are not "seeing sound waves". You are experiencing classic migraine with aura. The sound waves are actually called phosphenes. It's happening in your brain, not in your eyes, yet it feels like it's in your eye and you do lose partial vision. Seeking darkness and stillness is also classic migraine behaviour. How do I know all this? Because I'm a migrainer. My husband is a clusterhead and, trust me, cluster attacks are ENTIRELY different than migraine. You've been misdiagnosed, plain and simple. The good news is, however, that oxygen works well to abort migraine - ask your doc for a prescription for it!
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don
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A mis diagnosis isn't much of a stretch coming from a Doc who tells you "you can SEE a sound wave".
Did he mention anything about HEARING an xray.
You wont get proper medical treatment until you get a proper diagnosis.
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Linda_Howell
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Re: Hi everyone!
« Reply #13 on: Jun 23rd, 2004, 5:12pm » |
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Ashley,
Before you get defensive in what has been written here, please take a moment to see where everyone is coming from in their posts to you.
We are all here to help anyone and everyone who suffers from cluster headaches. These people who have answered your original post are not Neurologists, but they have a combined education and research time-in, to rival any Doctor, who gets a 5-hour class in headaches during his education as a physician. We've walked the walk and have done the time.
My suggestion to you would be: treat your pain as if it were a Crime scene investigation since that is what you want to do.
When you do that you might see where we're coming from in our responses.
Please believe that we would like nothing better than for you to have no reason to be here. o.k. edit: which means that we don't ever want anyone to feel this pain. 
Linda
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E-Double
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Re: Hi everyone!
« Reply #14 on: Jun 23rd, 2004, 9:09pm » |
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This poor girl, but holy Shit!!!!!!
That gave me the biggest laugh I've had in a while!! 
Thanks
Eric
on Jun 23rd, 2004, 4:39pm, don wrote:A mis diagnosis isn't much of a stretch coming from a Doc who tells you "you can SEE a sound wave".
Did he mention anything about HEARING an xray.
You wont get proper medical treatment until you get a proper diagnosis. |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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pubgirl
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Margi
I'm with you on this one as I get both migraine and CH.
Ashley
If it helps, I use EXACTLY the same abortives for both. Imigran and 02 depending on when and where I get the attack and they work very well for both.
Wendy
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alleyoop
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Re: Hi everyone!
« Reply #16 on: Jun 24th, 2004, 12:27am » |
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[quote author=Daredevil_Girl link=board=knowya;num=1087935511;start=0 Plus there is more to my cluster headaches than just that, I also found out that I have a brain tumor as well. So I just thought this would be a nice place to go and chat with people.
If the docs misdiagnosed migraine as cluster, makes one wonder if maybe they could have misdiagnosed the brain tumor. Ashley, I sure would do some serious research and try to find a good neuro. But one thing is for sure- pain is pain- and I'm sure no one objects to you posting on this board. You may have to be a little thick skinned but everyone here means well and just wants to point you in the right direction.
I wish you the very best and hope they misdiagnosed your brain tumor as well.
Alley
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Woobie
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Re: Hi everyone!
« Reply #17 on: Jun 24th, 2004, 1:43am » |
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Maybe it's the brain tumor causing the pain??
I - again - have to say that it sounds to me like migraines.
Sound waves?? That's an aura - migraine
Sitting in the dark - if you move it hurts? Impossible to sit still with CH ...
your eye sight getting worse? never heard of that with CH.
You may have had 7 doctors.. but my husband had 12-15 that ALL said it was sinus headaches.. and he needed his sinuses operated on. It's not that uncommon to have a misdiagnosis more than once.
I guarantee you - the people here on this site know more about these headaches than most doctors.
I am NOT dismissing your pain... just saying it's not sounding like CH to me.
Hope you get the help you need. And I'm sorry you're in so much pain.
tina
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