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Cerberus
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Newbie needs help..........
« on: Dec 23rd, 2003, 9:52pm »
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Well, this is a first for me.  I've never been in a chat room, if this is what you call it?!  My husband of 18 years has had cluster headaches for at least three years.  He is a chronic sufferer.  We frequent the emergency rooms at least 2-3 nights a week.  He gets 125 of Demerol and 75 of Phenergan every time.  He has gotten to where now he tells the docs what will work.  They sometimes won't give it and look at him like a "druggie".  He has lost his job, is on disability.  We owe out our butts for medical bills and still have no cure or anything that helps except the shots in the ER.  He has been to the Diamond Headache Clinic in Chicago, two weeks to be exact, with no relief.  I'm at my witts end, don't know what to do with him or myself.  Please, I'm desperate, I'm going nuts here and I'm sure my husband is too.  I'm worried now that he is hooked to the drugs because even when his headaches are not as severe as some of the others, he still goes to the ER.  He has tried just about everything.  Where does a person go from here?  I'm not sure how much longer I can hang on.  I know that some of you sufferers are thinking I am a cold-hearted bitch but after a while, it takes it toll on a marriage and family.  Anybody else out there going through what I am?  If so, please, let's talk.  I need some advise, reassurance, or something.  
 
 
Posted to the supporters corner , by newbie WKU lady
 
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Re: Newbie needs help..........
« Reply #1 on: Dec 23rd, 2003, 10:06pm »
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Welcome to the board......
 
You and your husband need to read the info found in the links to the left.  Tons of good info there.
 
Reading the posts......and for you, reading the posts in the Supporter's Corner.  There are some great supporter's here on this board.  Read their stories, it may help you to better understand.
 
Your husband should have discovered by now that the narcotic drugs do very little for CH.  In the experiences of a lot of the people here on this board, ER visits are pretty much a waste of time and $$.  Hard to find an ER doc that knows anything about CH.
 
Read all that you can.....and stay here and post and let us know how things are going for you and your hubby.
 
Pf vibes to your hubby.....
 
Jean
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Re: Newbie needs help..........
« Reply #2 on: Dec 23rd, 2003, 10:13pm »
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The first thing you might want to consider is getting away from the Diamond Clinic. I've heard 10 negative comments about the place to every one positive.
 
Apparantly keeping the "Diamonds" in the Diamond name is first priority for them. For what its worth.
 
What are they prescribing for him?
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Cerberus
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Re: Newbie needs help..........
« Reply #3 on: Dec 23rd, 2003, 10:20pm »
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Agreed....
 
 
Ramon
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Re: Newbie needs help..........
« Reply #4 on: Dec 23rd, 2003, 10:20pm »
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My husband has not been there for two years but prescribed only a Diamond liquid syrup.  He never did have it filled at the pharmacy because it didn't work in the clinic.  Also, they had him on Predisone with decreasing doses.  Even after all of this, he still had the headaches.  Right now, he is not taking anything except for his Synthroid (he developed Graves Disease after going to Diamond Clinic.  Coincidental?  Who knows,  but some docs seem to think that there may be a correlation between the lithium that was given to my husband during his two week stay)  He had his thyroid removed two months ago.  As far as anything preventative, he doesn't take anything.  He hasn't found anything that works for him.  He has taken two pages of medicines that do not help.
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Cerberus
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Re: Newbie needs help..........
« Reply #5 on: Dec 23rd, 2003, 10:27pm »
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Keepin this to the top..........Bump
 
C'mon people, the lady needs help.
 
Ramon
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Re: Newbie needs help..........
« Reply #6 on: Dec 23rd, 2003, 10:29pm »
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WKU lady,  
 
You mention nothing about any of the drugs your husband gets to stop cluster headaches except O2. Is he doing it right ? Check the Oxygen info to the left.  ALL the drugs you mentions DO NOT stop cluster headaches.  
 
Any narcotic drugs just either knock you out so you don't feel the pain or just make you high so you don't care about the pain.  
 
There are very few, if any, people here that have CLUSTER HEADACHES that take narcotic drugs you describe.  
 
Has your husband tried IMITREX, & Amerge to abort a CH ? There are about a dozen preventive meds to help keep them from coming too. Spend a bunch of time reading all the info you can.  
 
Good Luck ! Sending PF vibes.
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Cerberus
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Re: Newbie needs help..........
« Reply #7 on: Dec 23rd, 2003, 10:35pm »
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Bump........and again.
« Last Edit: Dec 23rd, 2003, 10:40pm by Cerberus » IP Logged

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Cerberus
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Re: Newbie needs help..........
« Reply #8 on: Dec 23rd, 2003, 10:44pm »
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Roll Eyes Bump Roll Eyes
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Re: Newbie needs help..........
« Reply #9 on: Dec 23rd, 2003, 10:44pm »
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Turn your back on the Diamond clinic and run. Run fast and far and find a legitimate neurologist.
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Jackie
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Re: Newbie needs help..........
« Reply #10 on: Dec 23rd, 2003, 10:49pm »
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Hi WKU Lady...
My husband, Blake, is also a chronic sufferer.  He was also a Diamond patient....like your husband it was a terrible waste of time and money.  They gave him the "Diamond Magic Syrup" too.....it's only a mixture of Tylenol with a couple other things thrown in and is for the after effects of a cluster headache....or so they said.
You mentioned that your husband has been on lots of drugs to no avail.....did Diamond or anyone else have him try Verapamil?  You mentioned Lithium but apparently it did not work.  Sometimes it has to be combined with Verapamil at a high dose to be effective.
Has you hubby ever taken Topomax or Depokote?  Blake is on a combo of Lithium, Verapamil and Topomax and for the first time in years is relatively pain free.
Has hubby every tried any of the triptan drugs...Imitrex, Zomig, etc.  These are the abortive drugs that work well for most of the sufferers here.  Oxygen therapy is the number one choice as an abortive but MUST be used properly.  Did Diamond suggest the 02?
I hear the desperation from reading your post....I too have been in your shoes.  Try as hard as you can to keep yourself and hubby going.  Let the fine folks on this board help you.....they can and will.  When I found this site I was at the bottom of the well....I swear they saved both Blake and myself. Study the information on this site and OUCH....ask questions and try to answer ours.  We're not medical professionals but there are may here who know more than the majority of doctors.
 
Hang in there.....things do get better....
 
Jacks Cool
 
Couple more questions....
Have you all had any success with any of the 'home remedies'...like hot strong coffee, hot or cold showers, ice packs on the head,  strenuous exercise at HA onset,  cold air conditioner blowing in his face, etc.?
« Last Edit: Dec 23rd, 2003, 10:54pm by Jackie » IP Logged
furrfish
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Re: Newbie needs help..........
« Reply #11 on: Dec 23rd, 2003, 11:51pm »
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I can certainly understand what your husband is going through.  I have been sufferring CH for four years now and I have lost jobs, credit, and nearly cost me my marriage.  My situation is alittle diferrent though.  I first started having these headaches in 1999 after an eye injury to my right eye.  I do not know if there is a connection between the two and while on active duty, I was diagnosed as having "stress headaches" associated with my Air Traffic Control Job.  These are certainly not stress headaches.  I have went to the VA hospital in Tomah Wisconsin and was given ergotamine and verapamil.  Either of which I don't think works effectively.  The ergotamine was discontinued and the verapamil leaves me with continued pain and pressure behind my right eye.  The only relief I can find is keeping my window air conditioner operational so I can freeze my head while pulling my hair almost out to distract myself from the pain until it goes away.  Additionally my ER visits cost about $570 each and I do not have health insurance.  I am hoping for an increase in disability from the VA.  I hope this helps and feel free to email me at furrfish@yahoo.com for any other questions.
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Patrick_A
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Re: Newbie needs help..........
« Reply #12 on: Dec 24th, 2003, 12:21am »
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Prednisone and Verapamil stopped mine in its tracks,Nothing else ever worked before!
 
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Re: Newbie needs help..........
« Reply #13 on: Dec 24th, 2003, 1:18am »
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Sorry folks, I don't mean to hijack the help for the WKU lady but I want to address the new guy furrfish.
 
furrfish..........you say your headaches started after, or was caused by an eye injury. IMHO, that does not sound like clusterheadaches. Please tell us more about your pain. Have you been diagnosed by a doctor/neurologist? Had a CAT scan or MRI to rule out other problems? Besides the ergotamine and verapamil what else have you tried? How often do the headaches come on and how long do they last? Do they ever wake you from sleep?
On the left side of the screen is a 'cluster quiz' button. Click it and take the quiz and let us know what you scored. If you do have clusterheadaches there is much information and help available here. If not we can probably help guide you to the best help.
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Re: Newbie needs help..........
« Reply #14 on: Dec 24th, 2003, 5:58am »
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My advice: Forget Diamond. It's not a place to get help.  
I can't remember anything positive in the archives.  
 
My little technique is a better deal. Free, non-invasive and harmless. Make him do it.  
 
http://www.netsync.net/users/charlies/
 
Charlie
 
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Re: Newbie needs help..........
« Reply #15 on: Dec 24th, 2003, 10:10am »
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The only real thing that worked for me was 960 mg of verapamil.  I have been on that dose for over six months and pain free.  Prednisone sometimes works, sometimes not.  Sounds like the Diamond Clinic is out for theirs.  I hope he gets the help he needs and soon. Stuey
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Re: Newbie needs help..........
« Reply #16 on: Dec 24th, 2003, 11:36am »
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I have read and studied these headaches now for the better part of two years.  It is my understanding that doctors do not know why these headaches develop.  They know the triggers...but why do these triggers only affect 0.03% of the male population.  And yes, I have woke up daily at 2-3 AM with terrible headaches...followed by another between 8-10 AM to be followed by another between 1-4 PM and lastly one that comes in between 7-11 PM.  All throughout the day though...it feels that many times somebody had just stuck a knife in my eye and temple area.  I had just assumed that it was possible that there had to be a connection with my eye...but also after the eye injury a few months had passed and I had developed migraines...then episodic clusters...now chronic.  It is of no interest to me that they be found connected to my eye...but it is a medical history of retinal damage now post vitreous detachment.  And my Verapamil is 240 MG at bedtime.
 
And for those of you who do suffer...find that vein in front of the ear on the affected side and massage it while applying ice to freeze your head.
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