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rascleo

Some Decisions

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First, I'd like to thank those members who replied to my posts, it meant a lot to me. I've made some pivotal decisions re: my Chronic Cluster headache situation. I've decided to stop seeing the doctors on my medical team, as there is nothing they can do to help relieve me from my 7 daily headaches. I feel their time would be better spent treating patients they can actually help. In addition, I will be stopping any and all medications I take for Chronic Cluster headache as they do not work and have zero affect to abort the headaches. I feel like I'm just throwing good money out the window, I can't afford to do that, as My school District has put me on a 6 month Unpaid Medical Leave, and that includes loosing my Health Insurance the end of this month.

Finally, I won't be posting on the boards on this site any longer. All I do is complain, and complain some more. All of you here know what Cluster headaches are, either episodic or chronic, so why listen to me go on and on about how horrible they are, you already know!

Thank you all for your kind, caring, and supportive words. I wish all of you pain free days, weeks, months and even years!

Sincerely,

Richard

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I urge you not to go. Just read if that makes you more comfortable. There are oodles of success stories here, and I'm sure there's something that can help you. Traditional meds seem to have failed for you. That's why this is the place to be.

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I agree with Brew. You have to find your "niche" in this malady. Nothing works for everyone. I agree about cancelling the docs your seeing if they aren't helping one bit.

ARE YOU ON OXYGEN?

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Hi Richard.  Yep sounds like it officially sucks but hang out with us more.  I haven't heard of too many (any??) people that were not remarkably better within a few months of coming to the busters or the CH.com.  You definitely have a hole to dig out of first and people on these 2 sites will spends as much time as you need to help.

Here's the advice part, so if you are not looking for advice you can skip the rest of this response.  I give it freely to take or not like most others on the site.

Relook at your oxygen use.  Go bigger if you need to.  15 lpm doesn't work for everyone.  Some people use 20-45lpm.  Tons of discussion on the sister website ch.com, good huffing techniques etc.

Liberal use of caffeine for daytime hits is a wonder drug for many of us.  There are some herbal stuff for night some people have success with.  Other dietary things may help as discussed at length at both sites.

But the moral of my post is: if you are getting creamed like you say, no medical insurance, life falling apart, severe pain all the time...it may be time to hit the big guns as reported on this site.  Of course follow all precautions.

I hope you don't just go away because getting some relief is what this site is for.  We all complain a little bit too.  People come here because the other stuff doesn't always work that well (or we don't want to deal with all the side effects). We all have been there one way or another. 

Keep reaching out and we can figure this thing out.  Don't leave us if you are still in pain. :)  PM anyone you want, everyone is great on this site.

--The Shaggy

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Richard,

Everyone on this site either has CH or is a CH supporter.  No complaint is too big, nearly everyone has either been to the depths of hell or been with a loved one there.  We understand and you can speak your mind, it's not complaining, it's being with your brothers and sisters that are glad to help.

Please see the PM I sent.

Jeff

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PLEASE don't leave, there is help here!

I'm chronic. I had between 3-8 hits each day. I say had, because I've been busting since Feb. 11th, started with RC seeds.

We're all in this screwed up disease together. Try busting. If it works, you may be able to go back to teaching! What you do at home is your own damned business, and you can tell them it was a miracle of God, or whatever you believe in that the headaches stopped.

Don't give up. There's hope. You can beat this, or at the very least get it to a point that you can live with... My doctors couldn't help me anymore either, so guess what?

I started busting.

You have choices. You don't have to go through it alone. We're here. Even if you don't talk to us, read what's here.

Either way, I wish you good luck, and hope you find an answer...

Mystina

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This family understands the feelings of desperation and hopelessness that are caused by CH's.  Please never feel like you are complaining.  Sometimes we just need a place to vent and gather ideas.  

When the CHs are relentless and it seems like there is no end in sight, it's important to know that it's possible for things to get better.  Like many others on this site, I have had a drastic improvement in my CCH by using alternative treatments.  I'm able to live life again rather than barely exist. 

We're all here to help each other cope - to offer encouragement and support.  Should you decide to try an alternative, this site contains a wealth of written information.   Feel free to ask questions.   

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Richard,

The middle of the night between bouts of agonizing pain is not the best time to think clearly. Drop your doctors and meds? probably a good idea, as you have clearly determined they are not helping you. To assume there is nothing else you can do is an error.

I spent thirty seven years in cluster land, alone. Doctors were of no help. In all that time, I met exactly one other cluster sufferer in the flesh. One. We are not exactly ubiquitous.

In this place are people who not only understand your situation, but have some pretty good ideas about how to improve it. If someone, somewhere, proposed trance channeling with gerbils strapped to your head to cure clusters, I guarantee you somebody here tried it. Besides me.

Alright, I jest, but the cumulative expertise makes this place the Mayo clinic of the cluster universe. No person here is going to berate you for bitching about it, either.

In fact, I would insist on it. Anger can be very therapeutically useful in managing pain. Are you angry at the Doctors who blithely handed you useless script after useless script for a condition they don't understand? good.

Are you perhaps angry at yourself for surrendering responsibility for your own health to others who don't feel the pain at all? better.

A journey begins with a single step. You have already decided not to be a victim of the medical establishment any longer. Take the next step; read, experiment, try. (Not the gerbils, though. I made that up.) Decide not to be a complacent victim of your own (understandable as it is) despondency.

Know what my favorite thing about this place is? Not the knowledge, compassion or love of the people, though all three abound. Its the unfailing good humor, the steadfast refusal to allow this debilitating condition to rob us of the dignity and nobility of life. Nobody here even owns a white flag.

That alone is reason enough to stay here, and I hope you do.

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That's heartbreaking...I see Richard hasn't been back on since mid April. You Guys are the BEST.. I've only been on here for a couple of days and already feel as tho I have a ton of friends supporting me. I always thought my HA's were 10's. After looking at your Kipp scale...I realize I'm only 8 or 9... Richard hit 10. I figure my body started this crap and I'm going to get it to stop it... one way or another... no giving up here. My heart goes out to all you people that have to go to work and deal with this...

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