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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hello All, New "clusterhead" here.

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Hello All, New "clusterhead" here. (Read 1200 times)

niavas

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South Dakota
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Hello All, New "clusterhead" here.
Feb 13^th, 2012 at 5:04am

I just got diagnosed a few weeks ago with CH. Last year in January I got my first onset of CH on the right side of my face, but I was diagnosed as having Trigeminal Neuralgia. They put me on Carbomezapine "it didn't work." And I suffered until April with the curse. A week later I had a tooth crack and it was thought I must of just had a bad tooth and I would be pain free. Come December the pain returned only now on the left side of my face and again I was told that it was TN. So again I was put on Carbomenzapine, which again didn't work. Angry

I looked online at all the sites and found that the only thing I had in common with TN'ers was severe pain. But with TN they have severe pain that lasts a few minuets. Where I would have episodes that would last an hour or more sometimes. It was on a TN website that I stumbled on the term Cluster headache.... It Fit......... that was last Sunday, It was the same day that I had an attack so bad that It sent me running to the ER "Yes I literally ran into the ER" lol. They put me on Oxygen "After I told them my suspicions." And sure enough the pain went away. Cheesy

They are now putting me on all sorts of meds to help get this under control. It's nice to find this site. This curse is very hard to take on by yourself. My family has been very supportive but I think its hard to understand if you haven't lived with it. I literally cried at the stories I read online because I saw so much of what I have gone through in the past year and it's nice to have people understand.

There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.”
---Albert Einstien

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Guiseppi

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Re: Hello All, New "clusterhead" here.
Reply #1 - Feb 13^th, 2012 at 9:02am

Glad the ER had the heads up on oxygen. Since it appears you may be one of the "lucky" ones, Sad

time to get serious about locating a Headache Specialist Neurologist. For two reasons. If it is cluster headache, it's most likely a lifetime condition. The sooner you get to working with an expert, the better. We have found GP's and even garden variety neuros lack the experience and working knowledge of CH to provide an effective range of treatment options.

Second, and this is a biggie, there are several more serious conditions that can mimic CH in their early stages and it's important to eliminate those so we're not treating the pain and ignoring a bigger problem.

All that being said, read this link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Oxygen should be your first line abortive. With a home set up that you can get on immediately, you'll find you're aborting in well under 10 minutes. I average 6-8 minutes. It's cheap, fast, effective, no side effects, it's hard not to love it.

Visit our sister site:

Clusterbusters.com

We deal with alternative treatments here, some legal some not, but all come with an impressive list of success stories.

This is a link to recommended doctors from our OUCH-US.ORG website, any close by?

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Glad you found us, hope we can help you.

Joe

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

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wimsey1

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Re: Hello All, New "clusterhead" here.
Reply #2 - Feb 13^th, 2012 at 9:25am

In my case, I was diagnosed with CHs first, and then they added TN on top of it. I would experience both attacks simultaneously, and it was awful. I also was on carbomanzapine for both conditions and it didn't help either one. O2...that aborted both. During a hit, the first to go was the TN pain, and shortly thereafter, the CH itself. There are other more effective meds, and O2 is the best abortive. Good luck, find a good neuro, and attack the beast. Blessings. lance

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niavas

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South Dakota
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Re: Hello All, New "clusterhead" here.
Reply #3 - Feb 13^th, 2012 at 10:30am

Thanks for the replies!

I have an appointment with a neurologist on March 19th "The earliest I could get in." Sad

Unfortunately there are no recommended ones in the state I live in (South Dakota) on the OUCH website. My PCP is working on getting me oxygen. "My insurance is being a bit brutish about it." The one thing I have going for me is the fact that this is not my first rodeo with something Major, I'm a 2 time survivor of cancer and have a close relationship with my primary doctors. (I pretty much have my own parking space.) lol I guess I'm lucky in the fact that when talking to my docs they listen to what I have to say. I've read a lot of stories of people getting the run around from their doctors over this. Angry

There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle.”
---Albert Einstien

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello All, New "clusterhead" here. Reply #4 - Feb 13^th, 2012 at 3:17pm A doctor who will listen to you is definitely worth their weight in gold! Joe
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markk38

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Houston, TX
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Re: Hello All, New "clusterhead" here.
Reply #5 - Feb 14^th, 2012 at 7:47pm

The good news on having an appointment time over a month out is that you have time to do your homework. You can browse around here and see what is working for people and even try some of them out. I had never tried the O2 or vitamins before coming here. I hate red bull, but I'll drink it now! Start a journal. I stated adding so many things at one time, it is immpossible for me to say what helped. Next cycle I'll have to start over with a more methodical approach. Anyway start the journal and go to you appointment armed with knowledge.

I know what you meen by crying at the stories here...it is nothing more then tragic that other people have to suffer this also, but ironically it is comforting non the less. I guess the releif for me was just knowing I was not crazy and others suffered from the same thing. Wish I had looked for this place years ago.

I'm truely sorry you have to be here. Good luck!
Mark

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