As you know, I've been  working with Fox news about an informational segment on clusters. Between hits, I've been doing a LOT of searching between surfing, posting, and emailing. There is so much repeated old info out there, and as you may or may not know, ANY type of media is going to be very limited in time they have for discussing any issue. So, I'm going to include a couple good resources I've found and gotten permission to use, but the only way to make this more beneficial for immediate relief etc., I've found for this segment to be as successful as possible and still stay within a short time frame, we should focus on putting together (especially for chronic and more severe ongoing cases), a list of the biggest, most important concerns about CHs to be presented to the specialist they find, rather than have him/her just take up a few minutes speaking on topics and unhelpful facts we already know. So please add to the list (please don't repeat if anything is already there), what you think should be the most important questions answered and the most important facts you think should be covered/unveiled.
The only reason I'm more concerned about chronic and severe cases is because they are foremost the most important people seeking immediate relief, and chances are, if it helps the chronic, anything covered, chances are, will also help the episodic and less serious sufferers.
So please let me know so I can get this out with the other information to Angela, by Friday, May 22nd, by 4am.
Thanks, and please rethread so it comes up as a new topic and stays on top for a while.
I'll start. Please change if you think there's something more serious.
Have a good morning and I hope you have a PFD! I'm off to the neuro.

1. More awareness of the use of O2 to abort.
2. A short clip of a real hit taking place, to show the true pain.
3."

Since I'm episodic I'm not as important as chronic sufferers?   I call bullshit.

                 Potter

Quote:

The only reason I'm more concerned about chronic and severe cases is because they are foremost the most important people seeking immediate relief, and chances are, if it helps the chronic, anything covered, chances are, will also help the episodic and less serious sufferers.

- I suggest that if you want help from the community, that you choose your words a little more carefully.  You just insulted a majority of the sufferers here by indicating episodics are more of an after thought. :-/

~mel

No, No, No, No, No, No, No!!!!!!!!!!!!!!
You've got it ALL wrong!!!!!!!
I'm episodic myself. NOT chronic or severe compared to most I've read about.
What I'm saying is, we all suffer the same thing, some are just more severe than others. I know EVERYONE suffers from this pain including myself.
If you truly did two tours, you should understand this!!! When you have many people injured (like clusters, everyone is physically inflicted someway), who are you going to take care of first? The person shot through the leg, or the person with his/her head half blown off, pierced through the heart, or worse?
Being chronic/severe, these poor souls suffer much worse and a lot more often than us periodics, therefore, they most likely have tried/investigated more alternatives seeking some relief and have more valuable input that would help everyone!
How many years have you been here? And how many periodics come here for relief while in cycle, then you never hear from them again until the next cycle? I've seen several in the short time I've been here!
That's why, in the title, I said, "A must read, esp. for...", the esp. stands for "Especially," and the must "Must Read," means everyone.
Trust me, I'm suffering as bad if not worse than most...and it's not just from clusters! But I'm thinking about the population as a whole, not just myself.
I don't know how to make it any clearer.
Sorry if you're offended.
Steve

As a chronic, I have to say I think I'm better off.  Instead of fearing the hit, I know it's coming.  Instead of wondering *if* I'm going to get hit as I try to fall asleep (or very shortly after), I know.  Being chronic, this beast is predictable. When I was episodic, the hits would come out of nowhere.  I hated that.  Yes, being in pain on a regular basis sucks, but at least it's regular.

ocnprl wrote on May 20^th, 2009 at 11:01am:

No, No, No, No, No, No, No!!!!!!!!!!!!!! You've got it ALL wrong!!!!!!! I'm episodic myself. NOT chronic or severe compared to most I've read about. What I'm saying is, we all suffer the same thing, some are just more severe than others. I know EVERYONE suffers from this pain including myself. If you truly did two tours, you should understand this!!! When you have many people injured (like clusters, everyone is physically inflicted someway), who are you going to take care of first? The person shot through the leg, or the person with his/her head half blown off, pierced through the heart, or worse? Being chronic/severe, these poor souls suffer much worse and a lot more often than us periodics, therefore, they most likely have tried/investigated more alternatives seeking some relief and have more valuable input that would help everyone! How many years have you been here? And how many periodics come here for relief while in cycle, then you never hear from them again until the next cycle? I've seen several in the short time I've been here! That's why, in the title, I said, "A must read, esp. for...", the esp. stands for "Especially," and the must "Must Read," means everyone. Trust me, I'm suffering as bad if not worse than most...and it's not just from clusters! But I'm thinking about the population as a whole, not just myself. I don't know how to make it any clearer. Sorry if you're offended. Steve

Every time someone has suggested oxygen to you on your multitude of posts you have completely ignored the advice and made some new post.  Why?  here are the results of my second go round. Would you like to discuss pain?

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                Potter the grunt

   

First of all, I'm sorry that happened to you. But Everyone suffers in one way or another. We both suffer from the same things "physical and mental," just in different forms. Believe me, I could tell you stories that would make your stomach turn, and at the same time, I'm sure you could do the same.
The point here, is not to cause more pain and suffering, it's to try and stop it.
You may have done 2 tours, have horrid experiences, nightmares, paranoia, etc. I don't know everything, but believe me, you have my sympathy. I can cry with you, but can't experience what you've gone through or what you are going through. And I have major physical, mental, financial etc. problems as well. Besides physical problems, I've had severe bi-polar/psychosis and acute anxiety almost all my life. Again, we are both suffering mentally as well, basically the same, but brought on by different reasons. I can't experience your level of emotional distraught or experiences/constant nightmares, but I feel for you. And at the same time, you can't understand the level of my emotional distraught or experiences etc.

I've had severe emotional problems my entire life. I was beaten and abused as a child, drugged and raped by my art teacher at 12, put in an institution at 13, put my trust in a Catholic priest while there who could get me out for a weekend under his supervision, and was raped by him as  well. Once out, I was so screwed up, my mom wouldn't have anything to do with me so I moved in with my dad. He was an alcoholic/drug addict, and bipolar, was a dentist so he could write his own prescriptions. He would drink a case of beer a day on top of a fifth, pop uppers and stay awake for days and beat the shit out of me several times a week because he didn't like the way I did this or did that, or I got a "B" instead of an "A." He would wake me with a broom stick or bat if he thought I was sleeping too much. etc. etc.
Then, after days, he'd pop Quaaludes, Seconal, and other sleeping pills, go into his bedroom and be out literally for days at a time.
Not to mention his daily use of Perodans, Percosets, Placydils, Valium, etc.
One night he came home drunk and drugged, didn't like the way I was cutting the carrots for a salad, and pulled a knife on me, threatened to kill me. I ran the hell out of the house, went to a friends and never saw him again for years and years. This was my own father! And my mother didn't understand or accept my being abused or my being diagnosed with bipolar while in the nuthouse, so wanted nothing to do with me.
And all that was just the first 17 years of my life. Long before clusters or anything else. And these last 25+ years have been worse in some ways.
I had so much shit go down in a short time about 2 years ago, I went into hiding, went weeks without a shower, the only time I went out was at 8am when the liquor store opened and bought a couple of cases and fifths to get me by a few days, lock the doors, unplug the phone, no computer and just tried drinking myself to death while popping my daily Oxycontins for pain, clonazepam for stress, Adderall to wake up...and that went on for about a year.
Finally, one morning, I was so sick, it was "do" or "die." I "did." It took over 2 weeks of ungodly withdrawals, sweats, shakes, isolation etc. to get that crap out of my system.
Then one day, I felt a little stronger, turned on the computer, and saw an old email from a friend I hadn't seen in almost 30 years. I responded, told me my story, gave me sympathy, believed in me, helped me get stronger and gave me a chance. He was tired of the crap, moved to Peru, and started WindAid, building generators for the poor and poverty stricken areas of South America.
Then one day, after bitching and complaining so much, he emailed me with a two-liner: "It's time to move forward and leave the past. You have internet access, so I assume you ate today..."
He would then, email me stories and pics of people who not only had no electricity, but had nowhere to live, went days or weeks without eating, the ones who had a place to live, lived in 6'x6'x6.5' huts with no running water, no electricity, no toilet, no bed, very sick, the top of the huts were made of crap like plastic etc. and leaked when it rained...but when he went to the coast to check his fish nets (he daily fished to provide food for these people, take them to the village and give out 2 fish per family), these people would smile and be so thankful like there was no tomorrow. That's suffering!!! And what's worse, there are people worse off than them!
That was over 6 months ago, and when I decided I was going to help people instead of hurting or doing nothing.
You ask me why I don't try O2. I can't even get in to see my damn doctor. I'm in a shit system with no insurance, waiting on disability, need back surgery, carpal tunnel surgery, have a cyst in my brain, still struggling with bipolar and acute anxiety, my clusters are back (but manageable), have little family left, owe over $75,000 I can't pay and going bankrupt, I can't work...and I've got a long road still ahead of me.
But I've never been happier. You know why? I quit abusing, i quit dwelling on my past, and I definitely quit thinking about the future.
The ONLY way I am surviving right now is by living moment to moment, sometimes second to second if I have to. And, more importantly, I'm doing what I can to help people. Some are worse off, many have it better.
I still have all my disabilities, but the only thing keeping me going is to focus on helping others. That's why I stuck with WindAid, doing things for other people, and when my clusters started again, I looked up on anything new, found this site, read posts by chronics etc. and realized mine aren't nearly as bad as others. That's when I talked more with Chuck, and contacted Angela about a possible story on Fox to help put a stop to this shit.
And unfortunately, I worded the post the wrong way and people got bent out of shape. I apologized, accepted it, and went on.
My point is, we have all suffered and/or are suffering, but there will always be someone worse off than us. As much shit as I've been through, am going through, and will have to go through, I'd still rather have all that to deal with than be homeless and starving with completely nothing.
Again, I can only deal with shit sometimes second to second, but I'm trying to stay focused and deal with everything the best I can. And I know people have had it worse, or still have it worse than I have or ever will. That's why O2 is not one of my top priorities right now.
Not stop this crap, go back to my post, and start listing some stuff I can use to send into Fox, alright!

Wow.

Your life has been a real crap-fest, huh?

Lots of us here could share similar stories. It's a damn good thing that clusterheads are some of the toughest mofos on earth... we learn to deal with whatever crap is thrown our way.

I'm gonna mention oxygen again, in response to your initial post. There is no better abortive out there. I use welders O2, it's cheap and easy to get.

Ok, WHERE did that come from?? :-?

nani wrote on May 20^th, 2009 at 2:19pm:

Your life has been a real crap-fest, huh? Lots of us here could share similar stories. It's a damn good thing that clusterheads (and their supporters)are some of the toughest mofos on earth... we learn to deal with whatever crap is thrown our way. I'm gonna mention oxygen again, in response to your initial post. There is no better abortive out there. I use welders O2, it's cheap and easy to get.

There, fixed it for you, nani.

My most humble apologies, darlin'. I actually think the supporters are tougher.  :)

ocnprl wrote on May 20^th, 2009 at 2:01pm:

... That's why O2 is not one of my top priorities right now. Not stop this crap, go back to my post, and start listing some stuff I can use to send into Fox, alright!

You know - you catch more flies with honey than vinegar. If you stopped being so both defensive AND aggressive and also demanding, if you were a little more accepting of help and a little less judgemental you might find a much better reception.

There is always welders Oxygen, there is a whole plethora of stuff we can suggest to help you and frankly, you'll be a lot more use to others if you can show them some hope of efficacy of treatment.

Newsflash. Millions of people in the US and worldwide are struggling to eat never mind buy meds. There are programs in place where you can get help with meds such as needymeds.org etc. We can help, advise, suggest, advocate - we can help. You aren't giving the impression you want help at all and when you won't even look to be helped it suggests you "enjoy" your suffering.


Oh and as for your petulant little demand - wow.
You are not someone I want representing me with the attitude you have at the moment.

Quote:

Not stop this crap, go back to my post, and start listing some stuff I can use to send into Fox, alright!

Wow, Steve, I'm afraid I am with Helen and others on this one.  I know we talked via e-mail, but this latest just turned off a WHOLE  lot of people, not to mention... well nevermind.   :o

My husband loves Fox channel so we watch it most of the time. Dr Rosenthal did a nice little thing.

I wish you luck.  I look forward to seeing something informative on Fox.

If you need stuff by May 22, you didn't give me enough time to contribute.  

Charlotte

With such a tight deadline, I thought you might have been back by now. But you haven't visited in almost 19 hours. What's up with that?

Fox News will surely understand what his problem is and give him an extension.

                  Potter

Ouch

I know I'm late but after that I think my posting my technique couldn't hurt. It's cheap, you know. It's on the other board as well.

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
I hope this technique is helpful and I wish you the best of luck

Charlie      

TGIF.

 Potter