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Today I got my answer (Read 822 times)
Lucifer
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Today I got my answer
Mar 12th, 2013 at 9:35pm
 
So, I went to see a headache specialist. It took him all of a few minutes to point out that what I have is a cluster headache.  Very kind doctor, said I could come in any time without an appointment if it was really bad.


I've been told my house is too dry, and it's a sinus thing. (for the 7 years I've lived in 5 different places, no less), I've been told it's allergies, migraine, bullshit diagnosis #201294, whatever.

I have been told for so long that I am wrong about my headaches that it kind of shocked me to hear it from an expert.

I know these are supposed to be the worst pain ever, but in my case, I handle pain very well. That said, it feels more like my brain just cannot cope with or comprehend/process the painful sensation of a drill boring into my skull and I begin to kick and thrash almost involuntarily. Do any of you know what I am saying here?

So, He gave me an occipital nerve blocker and that hurt about as much as a spitball compared to a headache but what a strange feeling, knowing there's a needle in one of the nerves.


Am I venting? Ranting?  I don't know. My dad told me to try coming here, and now I know for sure I've got clusters. I always "knew" it, but it is still like a jarring feeling.

and now, it's not that I feel validated, but after years of agony, having friends hold me down because they were worried about what I would do with myself, screaming and putting holes in my walls, I finally have an answer, and the answer is depressing. I knew it was coming, but it's depressing.
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« Last Edit: Mar 13th, 2013 at 9:09am by Lucifer »  
 
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Guiseppi
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San Diego to Florida 05-16-2011


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Re: Today I got my answer
Reply #1 - Mar 12th, 2013 at 9:41pm
 
But by no means the end of the world! Glad you stuck your head in. Glad you found an understanidng doc, they're worth their weight in gold, now some reading for ya!:

I’ve had CH for over 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days


So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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BarbaraD
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Hugs to ya


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Re: Today I got my answer
Reply #2 - Mar 13th, 2013 at 7:37am
 
What Joe said... and remember we're here and we UNDERSTAND... we've all been right where you are so we've all got the t-shirt.

Feel free to rant, vent or whatever, but DO keep us up on your progress. This board is a lifeline for support and understanding and has been for years and years. Use it and know someone is always here for you.

My one piece of advice is ATTITUDE. Keep in mind that we're bigger than this monster and we can whip him... Kiss
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What don't kill ya, Makes ya stronger!
 
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Lucifer
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Re: Today I got my answer
Reply #3 - Mar 13th, 2013 at 9:07am
 
you guys are amazing. im going to give that otc combo a try except with a vegan alt. to fish oil.


glad to know i can come here and talk.


by the way, the nerve blocking thing has helped some. i usually get a bad headache in the morning and thats definitely more tolerable today.
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Guiseppi
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Re: Today I got my answer
Reply #4 - Mar 13th, 2013 at 9:21am
 
by the way, the nerve blocking thing has helped some. i usually get a bad headache in the morning and thats definitely more tolerable today.

Well that's a great start!

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