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Corinakitty
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Drug Seeking
« on: Dec 20th, 2007, 4:00am »
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Hi, I'm new here. My husband is a sufferer of cluster headaches. He had one bout of them about 7 years ago, and is currently in the middle of one (started mid-November). We just got the correct diagnosis for his condition, after 2 trips to his regular doc and 2 ER trips, we finally had an ER doc declare that this was NOT an "abnormal migraine", but was in fact a cluster headache, with the neurologist seems to agree with. We started looking into it and yeah, point-for-point down the list of symptoms, he's a clusterhead. Right now he has Topamax and Vicodin and I'm going to really get on him to demand the O2 when he sees his neurologist next week. btw, of all the darn luck, he can't take triptins like Imitrex--he's terribly allergic. They make his throat close right up. Sad
Now, here's my question and the reason for the subject line:
Has anyone ever known their clusterhead to have been turned away/undermedicated/treated unkindly at the ER because it was assumed that they were "drug seeking"?  
We haven't had this happen so far, but I've heard of it happening and I'm wondering if he should get some kind of note to carry from his neurologist? To me, if someone is whimpering in the fetal position in your ER at 3 am with a worried wife by their side, it should be obvious that they aren't out to get high, but I'd hate to see him run into any problems, and I wonder what the ER staff must think, seeing us there twice in ten days.
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Jackie
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Re: Drug Seeking
« Reply #1 on: Dec 20th, 2007, 4:47am »
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Good Morning Cornina...
 
Welcome to the site.  I'm the wife of a CHer too.  Sorry you all have the need to be here but glad you found us.  There is a multitude of information here and support as well.
 
First off...it is not at all uncommor for cluster sufferers to be accused of being 'drug seekers'.  It's happened to many.  Having a letter from your neuro or GP would be good.  Keep it with you/your hubby and present it if and when you go to the ER.  Many CHers refuse to go to the ER because the attack is often over before they are even seen to.
 
Topomax is a good prevent drug for some sufferers.  It worked well for my hubby for a couple years.  As to the Vicodin...well,  that may not be the best.  Narcotics are not very effective for CH....they take to long to work and can cause other problems.  Read all you can....there are many posts about narcotics and CH.
 
Having 02 is the #1 defense for many....it should be used properly and quickly.  You can study about that on the OUCH site (yellow button on the left menu).
 
Good luck and please keep us posted.  There is someone here 24/7.
 
Jackie
 
 
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Woobie
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Re: Drug Seeking
« Reply #2 on: Dec 20th, 2007, 11:12am »
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HI
 
Yep - my husband was labeled a drug seeker... and to be honest - before I knew about clusters, I thought he was over-reacting too.  I feel HORRIBLE about that now, of course, but I thought it - so there it is. Undecided
 
Jackie is right......... always right - so listen to her.
the vicodin is worthless...and a note from a neuro in the wallet is a good idea.  
 
nice to meet you........
woobs Kiss
 
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nani
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Re: Drug Seeking
« Reply #3 on: Dec 20th, 2007, 12:03pm »
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Hi Corrina, welcome.
 
I can't take triptans, either. Oxygen, at 15lpm with a non-rebreather mask is my 1st line abortive. He can also try Energy drinks, RedBull, Rockstar, etc. The combination of taurine and caffeine can really knock an attack back.
 
As the others mentioned, Vicodin is not a good choice. It takes too long, and can be addicting.  
 
If he gets hit at night, try melatonin before bedtime, it helps many of us.  
 
Keep reading... there's tons of info here.
Thanks for being a supporter. We love supporters.  Smiley
 
pain free wishes to your hubby, nani
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Re: Drug Seeking
« Reply #4 on: Dec 20th, 2007, 12:56pm »
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Yes alot of us has had that label at one time or another. Narcotics (for me) have a compounding effect on a CH hit. They make it worse and last longer. The few times (2) that I have gone to an ER after I was diagnosed I stated right away that narcotics don't work but make it worse. Tis catches their attention and seems to make them take you more seriously.  
 
If your husband has just been diagnosed I would ask your neurologist about an alternative to Vicodin, there are alot of combinations that he hasn't tried yet that will most likely work alot better than that.
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Guiseppi
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Re: Drug Seeking
« Reply #5 on: Dec 20th, 2007, 1:54pm »
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Bless you for being a supporter, if my wife hadn't found this board for me and pushed me to the specialist I'd still be hugging my head and crying! You supporters rock!
 
When you start out by telling the ER narcotic meds are worthless for CH they listen a little closer. You do need to get your doc to presctibe 02 and have a home set up. If I let the CH establish itself, oxygen won't help me. So by the time mommy drove me to the er the CH would be on its way out anyways.  
 
I keep a tank in my car, 1 at work and 1 in my bedroom, and always have a regulator available. If I jump right on the 02 I can abort in less then 10 minutes, before the beast ever gets his talons sunk in.
 
And the advice about the narcotics is spot on. They provide very little relief, and their downsides are awful. Thank you again for being a supporter...we really can't say that enough! Grin
 
Guiseppi
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Mosaicwench
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Re: Drug Seeking
« Reply #6 on: Dec 21st, 2007, 8:10am »
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You've been given excellent advice here by people who know of what they speak.
 
I'm a supporter so I'll say I'm glad YOU are so involved with what's going on with your husband so you can be a good supporter.
 
Thanks for worrying and fretting about him and his diagnosis.  Once he gets the pain under control he'll realize the value of you as a supporter.  A good supporter can be a livesaver in an out of control cluster.
Like Jackie mentioned - we're here most all the time should you need us.
 
Welcome to clusterville - stick around and get to know us.  I've met some of my very dearest friends on these boards.
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Corinakitty
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Re: Drug Seeking
« Reply #7 on: Dec 24th, 2007, 4:54am »
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Thank you all sooooo much! Seriously, I could sit here and reword my thank-you a hundred times and still not find a way to fully convey my appreciation!  
My husband got a prescription for his O2, and should be getting it either tomorrow or after the holiday.  
Tonight we figured he'd be getting another headache, since they've been every other day like clockwork, and he had one Friday, so he asked what I'd read on here about abortives other than O2, and I suggested caffeine. He made 4 cups of double-strength Starbucks espresso and put it in the fridge, and at his usual time (10:30pm) when the headache hit, he sucked that stuff down and in 15 minutes he was almost totally over the headache! We were stunned and thrilled. We never could have come up with that on our own, and it WORKED! So, again, thank you, thank you, thank you and Merry Christmas!
P.S. My husband wants everyone to know he made his XBox Live username "Cluster Captive". He was pretty impressed with his creativity. Smiley
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Jackie
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Re: Drug Seeking
« Reply #8 on: Dec 24th, 2007, 8:06am »
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Good to hear that you all are doing better.`` Smiley
 
Now...make sure he uses the 02 correctly and that he gets on it at the first sign of a HA.  Very Important!!!
 
Glad the coffee is working....we've had success with hot tea too.
 
Hang in there, Sweetie.....it's gonna be OK... I promise.  Smiley
 
Merry Christmas to you all....
 
Jackie
 
 
 
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