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JoeyT
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1st Post-Plea for help
« on: Dec 28th, 2002, 9:06am »
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Well, this is my first post.  I get the feeling it’s going to be a long one-
 
I got my first full-blown Cluster headache on my 20th birthday: July 19, 1975.  This began, as all of you know, a seemingly endless series of drugs, doctors and pain.  Except for Ritalin I have been on every drug I’ve seen listed on these message boards. Sometimes I was on 7, 8 maybe 10 meds at a time.  Side effects?  Some pretty nasty ones.  My GP at the time identified my headaches correctly and I went to the Diamond Headache Clinic here in Chicago. I was a patient of the ‘famous’ Dr, Diamond on and off for about 8 years.  I won’t go into detail right now, but let me just say that greed of some doctors is also a battle that I have had to face.  I’m sure as time goes on I will go into detail about my dealings with the Diamond Headache Clinic but, now doesn’t seem the right time.
 
After a couple months of headaches they suddenly stopped. From about Oct. 1975 till Feb. of 1976 they were gone – poof.  A couple months later they returned stronger than ever.  After that, I did not get a break for another 20 years.  At some points I was getting 7 – 8 headaches per day.  I had to quit college, I lost several jobs.  My love life came to a standstill.  It destroyed my life.  Endless hours locked in the bathroom or my bedroom or anyplace I could get away from people, begging and pleading with God to just make them stop.  Seems to be a pretty common theme here.
 
 During this 20 year period my drug of choice for aborting my headaches was Cafergot suppositories.  A lot of the time the headaches would break through but it also aborted the headaches much of the time.  In the summer I would have suppositories stuffed into the AC vents of my car.  In restaurants I would always order an extra glass of ice water and throw a few Cafergot into the glass to keep them solid so that when the attack began I would be able to use them.  I was known as the guy with the ‘rectal rockets’ to anyone I would get close enough to share my story.  I also tried DHE-45 which worked sometimes but I would have a hell of a time jabbing that needle into my leg.  At some point in the 1990s Imitrex came out – what a joy. Incredible.  I would say 90% of the time a shot of Imitrex would abort the attack – life was good.  I had also discovered straight O2, which worked probably 80% of the time when I could get to it.  Not real convenient but a backup to the Imitrex.
 
In the summer of 1997, after increasing my dose of Verapamil to 480mg/day the headaches stopped.  For the 1st time in 20 years they were gone!!  I could drink booze, eat chocolate, Chinese food – I was in heaven.  
 
Although my CHs were chronic they were particularly nasty in the spring and especially the fall.  In Oct. 1997 my headaches returned.  I was hospitalized for 3 – 4 days in early Dec. 1997 and given IV steroids, which just about drove me mad – and didn’t really do much of anything for the headaches.  One thing it did do was put almost 20 pounds on me in less that a week.  Then in late Dec. the headaches stopped again.  
 
On Jan. 6, 1998 I awoke to a strange sensation in my chest, eventually my left arm, etc.  I had my last cigarette after swallowing several aspirins on the way to the ER.  You guessed it – a mild heart attack.  During the week that followed – all my medication was stopped and the headaches returned with a vengeance.  Even during my Angioplasty I had an oxygen tube in my mouth as I watched a catheter being threaded into my heart.  Then, about a week after leaving the hospital and resuming my verapamil, the headaches stopped again.
 
I had not had a headache for over four years – until this month.  Now I find, I can no longer use Imitrex, cafergot or anything with Ergotamine for that matter.  I am left with just the O2, which only seems to work about half the time.  The night before last, I finally got a full-blown cluster. A real ‘Kip Scale’ 10.  In fact it was actually several attacks in rapid succession.  The whole ordeal lasted about 5 hours.  I had truly forgotten just how incredible these headaches are, and how evil and deceptive that pain can be.  
 
 I cannot go back to the person that I was for over 20 years.  I will not be reduced to a sweating, twitching, groaning, sniffling pile of mush again.  I need help and that’s why I’m here…I need your help.  Right about now I feel as if my life is over.
 
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Re: 1st Post-Plea for help
« Reply #1 on: Dec 28th, 2002, 9:32am »
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Dear Joey, I'm so sorry you are in such pain right now. I cant offer you any advice on meds but there are others here that have had heart attacks and are able to be medicated, maybe they can help. I know when the beast attacks, he makes you feel like your life is over but just as he has left you before, he will leave again. Try to hang in there, pain free days may be just around the corner.
 
suzy
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Re: 1st Post-Plea for help
« Reply #2 on: Dec 28th, 2002, 9:36am »
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Hi!  Unfortunately I have no answers for you-I just wanted to say hello and acknowledge your hell. My story is very different-but if you have been reading on here, you already know everyones experiences are different. We all have the pain and frustration in common.  If they can really start to clone humans, maybe they can find an answer for us soon?
Jabeen
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Re: 1st Post-Plea for help
« Reply #3 on: Dec 28th, 2002, 9:37am »
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Joey,
 
Do you have a family?  Where are you located at?  Sorry to hear that CH is zapping your head like an old time bug zapper on the back porch.     LOL- DRK
 
I don't know what to tell you except that I can almost guarantee that I will start a cycle 10 days to 2 weeks after a major variance in my sleep schedule.  Lock-ins with the kids at church were always a major sacrifice because I knew what would come shortly after.
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Re: 1st Post-Plea for help
« Reply #4 on: Dec 28th, 2002, 9:40am »
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OMG!!  I am so sorry for you!    Embarassed
 
I don't know anything.. but I just wanted to say I will be praying for you!  
 
I hope you find something to help.. these people here are amazing - -
but.. you'll find that out for yourself!!
 
Good Luck..  
 
Tina
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Re: 1st Post-Plea for help
« Reply #5 on: Dec 28th, 2002, 10:03am »
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Welcome JoeyT,
 
Svenn is a member who also has had a heart attack. Do a search for his posts, or send him an Instant Message or email him (all those little icons under the name of a poster are the quickest way to reach him). He understands the ramifications of the post heart attack drug regime. He will go out of his way to help you (as will everyone here), he probably would have replied by now, but he is in a waay different time zone. He has different information about the ability to use abortives.
 
I sense the desperation in your post, however you have found your home away from home. These people on this board will reach out and be here for you. They, of all the people in this world, know what it is like.
 
Stay tough, (and reach out to Svenn).
 
David J.
 
P.S. There have been some posts about certain abortives or preventatives that work well after a persons system has been cleaned of all the "shotgun approach" drugs. So the effectiveness of things you've tried before, might be enhanced by the elimination of the background noise. Things change, there's always hope.
« Last Edit: Dec 28th, 2002, 10:09am by SommelierCH » IP Logged

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Re: 1st Post-Plea for help
« Reply #6 on: Dec 28th, 2002, 11:21am »
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Joey - I am sorry you're in such pain, and no, we won't let you go back. You said Oxygen was 80% effective, and you were on Verapamil. I thought Verap was used for folks with poor tickers, and if O2 works 80% of the time, you need to focus on that to help you through. Make sure you're using the O2 properly (lots of info here about that) and read, read, read. Lots of other methods to beat the beast.
Welcome to the board. You'll find the answers you need here. Check out the OUCH website also.(button on the left)
Hang tough
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Re: 1st Post-Plea for help
« Reply #7 on: Dec 28th, 2002, 11:32am »
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Joey....Hi......stick around the 'pain shop' here....least sumone can be here for you always....hopefully sumone can help ya figure out a safe routine with meds that has similar problems as you and will help you and work !! Your in good hands it seems to me bein here ! Pam
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Re: 1st Post-Plea for help
« Reply #8 on: Dec 28th, 2002, 1:03pm »
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David,
 
Thanks so much for leading me in the right direction - I really do appreciate it.
 
Joey
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JoeyT
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Re: 1st Post-Plea for help
« Reply #9 on: Dec 28th, 2002, 1:14pm »
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Joey again.  I was trying to do as you suggested but I can't seem to find Svenn's email address or profile.  I am finding this board a little confusing.  Can you help (again)?
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Re: 1st Post-Plea for help
« Reply #10 on: Dec 28th, 2002, 1:54pm »
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Joey,
 
Sorry for your pain and trouble.  We will help any way we can.
 
Svenn's name is on the topics page, you will find a post that was started by him.  Just click on his name.
 
Good luck,
 
R
 
ps--don't just read the OUCH site...join....
« Last Edit: Dec 28th, 2002, 1:57pm by Roxy » IP Logged

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Re: 1st Post-Plea for help
« Reply #11 on: Dec 28th, 2002, 2:01pm »
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Hi Joey and welcome. I can tell you are in trouble so here is a technique, that as strange as it sounds, is something that I used very successfully:
 
Dr. Wright's Circulatory Technique
 
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
 
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head.  This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.  
 
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided.  If you let up or lose concentration, it’s very hard to restart this process.  It may take some time but when this works, the relief is almost immediate.  
 
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood.  It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.  
 
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
 
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.  
 
I wish you the best of luck - Charlie Strand
 
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Re: 1st Post-Plea for help
« Reply #12 on: Dec 28th, 2002, 2:10pm »
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I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway  
  
Verapamil Retard 120mgX5-7/daily during cycle    
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree    
Prednisolone in high doze for 10 days 80mg    
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily    
    
This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway    
 
I also have a bad heartcondition.Had a heartattack Nov 12.2001,But quitting the shots is no option for me.I think that the shots is Gods gift to us clusterheads.  
The thing that i don`t understand or found the answer to is how i after the attack has had only 9 light clusterattacks."singleattacks"And before i was diagnosed as a cronical.  
But so it has been said."I do not reccomend heartattacks as a treatment for cluster".Its a bit extreme for that.Dont you think?    
Take care my friend    
« Last Edit: Dec 28th, 2002, 2:11pm by The  mad viking » IP Logged

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Re: 1st Post-Plea for help
« Reply #13 on: Dec 28th, 2002, 3:59pm »
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Welcome home ole timer,
Sounds like you have hoed this road before. I cant offer much more in the way of advice right now but I can send some PF vibes your way and hope the beast sees fit to release you soon. Hang in there Joey.
Mark

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Re: 1st Post-Plea for help
« Reply #14 on: Dec 29th, 2002, 1:55am »
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Welcome aboard Joey.  You have travelled a really tough road alone !!!!!!!!!  But you aren't alone anymore; and hopefully something someone suggests will work for you.  In the meantime ........ pain free prayers coming your way.
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Re: 1st Post-Plea for help
« Reply #15 on: Dec 29th, 2002, 8:52am »
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Welcome aboard Joey, sorry you had to find us though Sad
 
I too have a heart condition so I can empathize with your situation.  I also have low blood pressure so can't even take the verapamil or other calcium channel blockers, so my list of medication no no's is long.  O2, ice packs and this board are my life savers.  
 
I'm in a situation that if it helps my head it will hurt my heart, and if it helps my heart it will hurt the rest of me - go figger.
 
You'll find lots of support and help here for the times when you are alone and have nothing.
 
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Re: 1st Post-Plea for help
« Reply #16 on: Dec 29th, 2002, 10:23am »
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Joey,
   So sorry to have to welcome you to our lil corner of the world. But now that you have found us, pull up a chair & have a seat. You will find a wealth of information, support and the best group of folks you could ever hope to find. You are not alone anymore, Welcome home.
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Re: 1st Post-Plea for help
« Reply #17 on: Dec 29th, 2002, 6:51pm »
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Joey,
Welcome to the family....sorry that you have a need to be here but since you do....Welcome.... Smiley
If you need any help or questions answered just ask.  There is a wealth of knowledge here.
 
My husband was a Diamond patient.  They put him in their 'infamous' hospital for over two weeks.  That should have made a few house payments for the good doctor. Angry
I'd love to hear your take on the 'clinic'..... Shocked
 
Jacks Cool
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Re: 1st Post-Plea for help
« Reply #18 on: Dec 29th, 2002, 10:55pm »
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I just wanted to thank everybody that took the time to say something in response to my 1st post.  It really does help to know that there are people out there who DO KNOW exactly what kind of pain I'm talking about.  I've wanted to reply to some posts specifically but am having a problem figuring out exactly how this message board works. I kind of feel stupid seeing as I write software for a living.  
 
Thanks again...Joey
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Re: 1st Post-Plea for help
« Reply #19 on: Dec 30th, 2002, 5:42am »
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Quote:
I've wanted to reply to some posts specifically but am having a problem figuring out exactly how this message board works. I kind of feel stupid seeing as I write software for a living.    
 
Thanks again...Joey

 
 
FUCKENEH JOEY,
 
That one line alone will endear you to most of us on this message board. Not that this board is complicated or badly designed, quite the contrary. However, all of us, as newbies, tend to be baffled by Charlie’s “Dancing friends”, Mark C’s “WELCOME” signs and Jonny’s photos. How the hell do they do that?  
 
FUCKENEH, that makes my day, thanks.
 
But in the real world now. How are you doing? Is the O2  having any affect? Make sure you are using it right, check out this site.
http://tinyurl.com/3voa
 
Check out the Verapamil again, it might take a week to kick in, but lot’s of folks here swear by it. There are several different types, what might be good for heart patients might not be the best for clusters, but (WARNING: Cliché alert) “beggars can’t be choosers”. Here is some info from a medical site. Of course you can’t believe everything you see on the net, but you also can’t believe everything an uninformed medical community says either.
 
Quote:
Calcium channel blockers for heart attack and unstable angina
How It Works
Calcium channel blockers help treat coronary artery disease by:
· Increasing blood flow to the heart muscle by expanding (dilating) the coronary arteries.  
· Possibly helping to prevent a spasm of the coronary arteries.  
· Lowering blood pressure and the workload on the heart, which allows the heart muscle to function with less oxygen and blood flow.  
· Sometimes slowing a rapid heart rate and controlling irregular heart rhythms.  
Why It Is Used
Although they are not proven to reduce death or prevent another heart attack, calcium channel blockers are useful in lowering blood pressure, controlling symptoms and treating complications of heart attack (such as arrhythmias).  
What to Think About
Calcium channel blockers are most effective when they are combined with nitrates and beta-blockers, but their dosage must be monitored carefully to prevent side effects.
In general, the long-acting forms (taken once a day) of calcium channel blockers are preferred over the short-acting forms (2 to 4 times per day).
Verapamil, diltiazem, and nifedipine may worsen heart failure. Amlodipine, felodipine, and nisoldipine are less likely to worsen heart failure.

 
 
One important point, is that nitro pills used in the cardio community are known and documented triggers for clusters!!
 
Keep posting, friend. We worry about our family, so keep us up to date, we care.
 
David J.
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Re: 1st Post-Plea for help
« Reply #20 on: Dec 30th, 2002, 10:06am »
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David, Thanks for the post,
 
I have been on verapamil for over 5 years now.  It took several months but it was the first med to actually give me a break after over 20 years of being chronic.  I am taking 480mg/day.  I know from experience that missing a couple of days will cause my CHs to come back.  So I guess I am still chronic but now experiencing a cycle.
 
The O2 works most of the time.  However, the attacks that the O2 does not catch are really a bitch.  I had 5 hours of pure hell the other night.  I would use the O2 for a while, the pain would decrease, then when I stopped the O2 the HA would attack even stronger than ever.  I had forgotten just how horrible that pain can be.
 
Thanks again for taking the time to reply.
 
Joey
 
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Re: 1st Post-Plea for help
« Reply #21 on: Dec 30th, 2002, 10:54am »
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Hey Joey ... just had to say you gave me a good laugh about the "I feel kind of stupid as I write software for a living".  I am also a programmer and have more trouble with message boards !!!  LOL, I think sometimes we think tooooooo much to use something soooooooooo easy.  Just kick back, don't think, and you will figure it out !!!!!!!!!!!
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Re: 1st Post-Plea for help
« Reply #22 on: Dec 30th, 2002, 5:52pm »
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Welcome to the board!  Sorry that the beast has your cranium wrapped in high voltage cable, and is blasting you with as much juice as he can for your daily cluster-shock treatments.  Good luck!
 
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