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FZfan
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Hello all
« on: Feb 24th, 2004, 6:20pm »
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Well, well, well. It's been over three years since I went to the net looking for cluster info. I had no idea this site existed. What a godsend!
 
My Story,
 
My father was a chronic CH sufferer from his 40's into his 60's. He's 73 now and had his last one when he was 62.
 
He had a helluva time with them and with doctors. He did finally end up at the Diamond Headache clinic in Chicago where he finally got the help he needed.
 
Because of this, I knew alot about CH.
 
Then in 1995, about 6 months after I turned 40, BAM! I got them, and I knew it. I went to my doctor, and it turned out I knew alot more about them than he did. But he was fascinated with it, and together we have both been researching and learning and trying different treatments. One of his good buddies is a neurologist and he helps us also.
 
My CH's are episodic, and for that I feel lucky. My episodes usually run about 3 to 4 weeks with remissions of anywhere from 6 to 18 months. I love the pain scale you have here. Mine range from 6 to 8 and run anywhere from 30 minutes to 3 hours.
 
Brief history of my treatments:
 
Imitrex - didn't work for me. Tried both oral and injection.
 
Zomig - nope
 
Calcium blockers - no help
 
Beta blockers - nada
 
Tylynol #4 - this was somewhat helpful. Would sometimes reduce the pain, but never take it away. The amount I had to take to acheive this effect was too high and this treatment couldn't continue. Like my doctor said, don't wanna see your eyes change color from the codiene.
 
Oxygen - Aha, this was promising. It works for me about 50 percent of the time. But when it works, oh man, I can't possibly describe how good it feels to actually feel that pain melt away. It's almost a religious experience.
 
After a couple of years of just Oxygen, we were still looking for a way to raise that percentage. This lead me to my current treatment, which for me has been nearly 100 percent effective.
 
I have a prescription for a concoction called, the Diamond Headache Elixer. It's a three part mix that can only be made by a compound pharmiscist, and there is only one of those in my area. It's basically a "Tylenol bomb" as my doctor puts it. I don't know the exact ingredients, but the idea is to hit your stomach lining with a massive dose of tylenol accompanied by a massive histerestimine to open up all your pores. You have to drink two ounces of this stuff, which is tough because it tastes worse than Nyquil. Then you hit the Oxygen. This combination has eliminated my headaches in about 12 minutes almost every time.
 
After the headache is gone, I take one oxycontin. The theory here is to prevent you from feeling the next one for the next 12 hours. This also has been effective, although the side effect is sleeplessness, which kinda makes it real hard to work the next day. For this reason, I have quit taking the oxycontin unless I get an "8".
 
I keep two oxygen tanks in the house at all times. The elixer is expensive and hard to get, so I occassionally run out of it and have to get by on oxygen alone. I have been fortunate judging by the other writings on this board. Seems most of you have it worse than I do.
 
Please keep up the good work. I hope my experience can work for someone else. There is truly no feeling like the feeling of a number 8 cluster just melting away.
 
BTW, I found this board at this point in time because the Beast (I had no idea nicknames existed for CH stuff, I particularly like "the dance"Winkhas returned, started a couple days ago. Not looking forward to going to sleep tonite. Even though this treatment works (for me) at removing the pain, it does nothing to repair the damage to the bioligical clock.
 
Good luck and best wishes to everyone seeking relief from this horrible affliction.
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Re: Hello all
« Reply #1 on: Feb 24th, 2004, 6:31pm »
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Hello and welcome to the board but sorry that your going through this again.  Glad you've found something that works.  Tylenol of any sort doesn't have much eefect on me but as you'll see everyone has something different that works for them and others have been helped here by suggestions from people here.  So your already on the right track.  Keep us posted on how it goes with your doctors appt.
 
Wishing you PFD's
 
Belle
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Re: Hello all
« Reply #2 on: Feb 24th, 2004, 7:16pm »
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Wow, I must say that you are the first person I have ever heard of who has a family member with the same condition.  I’m sorry that both you and your father have had to endure this nightmare of a condition.  You certainly were/are a bit more fortunate than most of us to have so much knowledge on the topic so far ahead of time.  You are also very fortunate in that you can talk to your father about your condition, knowing very well that he understands exactly what you are experiencing.  The “dance” has returned for me just yesterday so I can certainly understand and sympathize with your state of mind right now.  
 
Best wishes for pain free nights over the next 3-4 weeks.
 
Laurie  
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Re: Hello all
« Reply #3 on: Feb 24th, 2004, 10:44pm »
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Thanks, and I hope you can find something that works for you.
 
You're right about the advantage for me of learning about it through my father. He went through real hell, mostly because his many doctors didn't arrive at the correct diagnosis until 1985, around 15 years into his ordeal. They drugged the sh*t out of him all those years. Not really entirely their fault, very little was known about them back then. By the time they finally came up with an effective treatment for him, he was near the end of his run with CH.
 
Unfortunately, even today nearly 20 years later, not a whole lot more is really known about CH.
 
Belle - I didn't explain the Diamond Headache Elixer very well, let me try again. It's a little more than just Tylenol.
 
The three parts are:
 
Arthropan - an arthritis pain medication known to reduce swelling.
 
Adult Tylenol Elixer - A super strength Tylenol liquid
 
Hydroxyzine - This medication increases the effect of pain relievers and is also a antihistamine.  
 
The idea is for the hydroxyzine to amplify the arthropan and tylenol while at the same time opening the breathing tubes to amplify the effect of breathing the oxygen. The liquid is thick and coats the lining of the stomach to get everything into the blood stream faster.
 
Like I said, this treatment takes all but a "10" away in almost exactly twelve minutes after starting to breath the oxygen. I time it every time and I've done this treatment at least a couple dozen times.
 
The only side effect to the elixer (other than the terrible taste) is the antihistamine can keep you awake the rest of the night. That's ok. I'd rather stay up all night with no pain than suffer through the pain and then try to sleep. Really makes going to work rough the next day, though. To bad these thing won't just strike on weekends.  Smiley
 
Of course, like you said, this strange affliction doesn't seem to lend itself to one treatment that works for everyone. It simply just works for me at this point in time. Hopefully, a simple, universal treatment will be discovered some day. Probably right after my episodes finally come to an end!  Grin
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Re: Hello all
« Reply #4 on: Feb 25th, 2004, 1:51am »
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Welcome to the board, FZ
 
Sounds like you got a handle on the beast.    Wink
 
Sorry you are suffering from these awful ha's.....but this is the place to be!   The greatest support and the best friends you will ever have are right here.    Cool
 
Stay with us.....let us know how things are going for you.   Usually someone here 24/7.
 
PF vibes,
 
Jean
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Re: Hello all
« Reply #5 on: Feb 25th, 2004, 10:40pm »
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Thanks txbass. Unfortunately, no one really has a handle on this beast. I wrote the following a few minutes ago when I finally felt up to it...
 
The beast is back.
 
It's been a 9 month remission this time. Started three days ago, 2 a day - one at 4:00p and one at 1:30a. I've never had one this early in the day in previous episodes. (before coming to this site I called them "spells" ) For me they have always been between the hours of 8:30p and 6a. Another new thing this time around - the one at 4:00 has been a k9 three days in a row. Fortunately, the 4p one has only lasted 30 minutes, but the one at 1:30a has been 6,6,8 for 1 hour. I don't know which is worse. Maybe the one at 4p because it's right after I get off work.  
 
Today I had the afternoon off to help my wife assemble a new bed we were taking deliver of. After we set up the bed we went to town to get new linens and nightstands. My wife was on cloud nine. She had been looking forward to this day since we ordered it a week ago.
 
We picked up the linens and then went to a big furniture warehouse to pick out the nightstands. As we are walking into the store, I can feel one coming on! I can't believe it! Not now!!! I sucked it up and went on in. By the time we got to the end table area I had to tell my wife we had to leave. The beast was attacking. She looked at me and said, "Oh my god! Horner's Syndrome. You look just like it." She has been reading the posts and information on this site with me the last couple of days.  
 
Needless to say we got the hell out of there. It was a 20 minute drive home. It was just horrible. K9 all the way. Tears were streaming down my face in buckets. I hadn't had one like this in quite a while. We got home and I stumbled into the house. Within 5 minutes, the attack passed and I was wiped out. I sat in a chair for a couple of hours just completely spaced out.  
 
As I write this, I know tonight is coming. We will soon lay down on our new bed and linens, and I will surely be awakened at 1:30a - I just know it. My oxygen is ready, but I am out of elixer. Looks like O2 will have to do tonite.
 
God bless my wife. I don't know how she can put up with this. Seeing my doctor thursday. Don't expect anything new, but I'll update him anyway.  
 
The struggle continues...
 
I hope I don't sound selfish or self centered. I just want to express my experiences to those who truly understand. Thanks for listening.
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Re: Hello all
« Reply #6 on: Feb 25th, 2004, 11:52pm »
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Don't be afraid to inquire about altering and changing medication if present meds become less effective.  What used to seem like what was working for me became outdated over time and I paid attention to what is successful to others here.  I got good ideas here and am blessed to be suffering less pain because of it.  I am still learning.
 
Welcome,
 
Kevin M
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Re: Hello all
« Reply #7 on: Feb 26th, 2004, 2:44am »
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Welcome aboard and thanks for your interesting narratives. Sorry for your having to deal with this horror.  Lots of good ideas and support here.  
 
You might try sleeping in a recliner. It helped me by sometimes reducing my nighttime attacks by one anyway.  
 
Here are a couple links that may be helpful. The first being a technique that worked for me:    
 
http://www.netsync.net/~charlies/
 
This one is a letter written by a fellow cluster headache sufferer that is the best of its kind to help explain these attacks to families, friends and employers. Its author encourages copying. It’s well worth it:  
 
[url]"http://www.ouch-uk.org/ch/note_colleagues.cfm"  
[/url]
 
Good luck and let us know how you're getting along.
 
Charlie
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Re: Hello all
« Reply #8 on: Feb 26th, 2004, 8:23am »
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Welcome FZMan!
 
Just wanted to say hi -  
 
Tina Kiss
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Re: Hello all
« Reply #9 on: Feb 26th, 2004, 10:42am »
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I also like the fact your dad stopped getting them at age 62- hope for all of us that these things might not be here forever...
 
I know Stadol gets some bad press here but for me it works...completely wipes me out though...but for simple pain relief I have never found anything better. What a strange feeling to have a CH but no pain...
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Re: Hello all
« Reply #10 on: Mar 5th, 2004, 2:23pm »
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Welcome, sorry you have to be here.  My dad got them too.  He was never officially diagnosed though.  Went through lots of testing and lots of drugs and they could never figure out what was wrong with him.  He finally just gave up on the docs and meds, and suffered through.  That's probably why i never got tested or anything right away.  I just figured i inherited these awful h/a that no one knew anything about and I was screwed.  Glad I know now, and as for my dad, well he is 55 and hasn't had one in about 3 years.  We are hoping he is done with them.  But if he's not, I have told him about this place!!!
Good luck and PF days to all.
Andrea
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Re: Hello all
« Reply #11 on: Mar 6th, 2004, 2:14pm »
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Andrea, sorry to hear about your father's experience. Sound's similar to my dad's. We are both lucky, in that we have family members who can truly understand what we go through. I know it's stating the obvious, but good support is very helpful, maybe even more helpful than the meds themselves. That's why this board is, in itself, a new form of support and treatment for this bizarre affliction.
 
Apparently, from what I've read, heredity at one time was thought to be a factor, but now I guess that's been ruled out? In a strange sort of way I guess that makes us very lucky indeed.
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