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RandyJ

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New member from N.E. Ohio
Nov 6^th, 2010 at 2:34pm

Just wanted to introduce myself and say hello. I just heard of cluster headaches this past week and according to all my symptoms, I believe I have been a sufferer since 2003. Whew!...Now maybe I can get some actual help.
When I first started having them my regular doctor and then even my specialist (orthapedic) kept blaming my headaches on the arthritis in my neck. Though they did seem completely baffled by the extreme runny nose and teary eye on the right side only and why they occured several times a night. I got to the point where I was begging them for help and they got too the point of just referring back to the other doctor. LOL. It was a nightmare. Nothing they gave me helped in the least.
Finally, when I lost my job and my health insurance, I signed up for veterans health which I was eligible for and within about five minutes of explaining my symptoms to my new doctor there, she said, Hmmmm, sounds like you have cluster headaches. Huh?
So, here I am, with MRI's scheduled for later this month. If it truly is cluster headaches, at least now I have someone who understands.
Thank you for being here.

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bejeeber

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Re: New member from N.E. Ohio
Reply #1 - Nov 6^th, 2010 at 3:00pm

Yep we understand.

Plus much more than that, we've pooled our knowledge regarding how to beat these things - something that is necessary since the medical profession generally does a very poor job of diagnosing (as you've seen so far) and treating CH.

If it turns out you do truly have CH, please stick around to educate yourself on how to take this into your own hands as much as possible, and how to treat it as effectively as possible.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Guiseppi

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Re: New member from N.E. Ohio
Reply #2 - Nov 6^th, 2010 at 5:20pm

For now, read the oxygen info tab on the left. If it turns out you have CH, oxygen will be your new best friend. 32 years of CH, I used to have 90 minute rides, with oxygen, I abort in about 6-8 minutes with oxygen!

Then just start reading like crazy, if you have CH, knowledge is your most powerful weapon!!!

Welcome to the board!

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Linda_Howell

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Re: New member from N.E. Ohio
Reply #3 - Nov 6^th, 2010 at 5:50pm

One of the worst things we, as patients, can do is go into our Dr.s office and say fix me. This conditio9n is so rare, many Dr.s have no clue and so we need to be our own best advocates in treatment. That means WE have to understand the condition and all the treatment options so we can educate our doctors.

Just about everything there is to know about CH is right here. In the links to the left of where you are reading as well as in all the threads and posts.

You've got a lot of reading to do and we are all here to answer questions you may have along the way.

Linda

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Hurt people.....hurt people. Think about it.

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RandyJ

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Re: New member from N.E. Ohio -Reply
Reply #4 - Nov 6^th, 2010 at 6:21pm

Thanks everyone,

Until this week, I thought maybe I was all alone on this and my old doctors got tired of me calling them. I probably should have started research on my own but didn't have my own computer and assumed they were right about the arthritis. Though they couldn't explain why the stronger drugs they gave me had no effect whatsoever.
So far its only been episodic (thankfully) and from reading other experiences on here with chronic CH. I can't imagine how you got through it for years at a time/ The pain is so excrutiating and that along with the lack of sleep is unbearable.
I have read quite a bit in the last couple days and found this site. I plan on becoming an expert on this pain with all of your help.
Question: Can they actually do an accurate diagnosis by testing? I took the quiz on here and every answer was my smptoms exactly. I would hate to go down the wrong road once again.

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Guiseppi

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Re: New member from N.E. Ohio
Reply #5 - Nov 6^th, 2010 at 7:55pm

It's pretty much diagnosis thru elimination, I don't believe there is any actual "test" to diagnose CH. If you're not already doing so, start a diary. When the attacks start, how fast they build, how high they build, how long they stay at peak how fast they go away, describe the pain, boring, throbbing, stabbing, a combo of those, where the pain is centralized, any side observations, the runny nose, red eye etc., what has and has not helped in the past. The diagnosis will regimen.

be in the details. It's why re strongly recommend a headache specialist neurologist. It's your best bet at an accurate diagnosis and effective treatment Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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RandyJ

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Re: New member from N.E. Ohio
Reply #6 - Nov 6^th, 2010 at 8:23pm

Guiseppe,

Thanks for the reply and I will be sure to do that. Right now I am pain free but am scared to death it will return.

At least now, if it does return I have lots of good ideas to try and stop the pain...or at least ease it some.

My wife thought I was going crazy for a while as all I could do was sit and rock back and forth with tears streaming down my face every night almost precisely 90 minutes after falling asleep. Then up twice more before dragging off to work.

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Katie C.

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Re: New member from N.E. Ohio
Reply #7 - Nov 7^th, 2010 at 6:54am

From one NE Ohioan to another, this has been a pretty bad year for headaches in my opinion.

You will find so much extremely valuable information on this board and through the links to the left.

Find yourself a good neuro. See someone at the Cleveland Clinic Headache Center. I just met with Dr. Stillman at the main campus and he knew exactly what I was dealing with and put me on a variety of things. I'm on my way to remission and am getting better every day.

In the meantime, educate yourself and don't be afraid to ask questions. If you can't find what you are looking for on the boards, post a topic.

This board is great. One big family that understands what you're going through.

Wishing you pain-free days and nights.

~ Katie

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"Flying is learning how to throw yourself at the ground and miss." - Douglas Adams

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RandyJ CH.com Newbie Offline I Love CH.com! Posts: 9	Re: New member from N.E. Ohio Reply #8 - Nov 7^th, 2010 at 5:58pm Thanks Katie, I will do that...I have MRI's scheduled for the end of the month to rule out anything else. Then if the V.A. will pay for it, hopefully I can get into the center you mentioned.
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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: New member from N.E. Ohio Reply #9 - Nov 7^th, 2010 at 11:14pm N.E. ohio is a pretty cool place couple times a week i take a few loads up to the con-way terminal in lordstown up by the chevy plant. one of my favorite terminals to go to. welcome to the board
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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: New member from N.E. Ohio Reply #10 - Nov 8^th, 2010 at 9:38pm Welcome, I to am from N.E Ohio. Just east of Cleveland. Get the 02, It will change the way you live with clusters. If you need any help with anything just let me know. Coach Bill
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RandyJ CH.com Newbie Offline I Love CH.com! Posts: 9	Re: New member from N.E. Ohio Reply #11 - Nov 9^th, 2010 at 7:07pm Thanks to all of you here. smiles Kind of like having a new family.
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