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   Tenth bout with CH...what a waste of 20 years
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   Author  Topic: Tenth bout with CH...what a waste of 20 years  (Read 775 times)
Michelle4174
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Tenth bout with CH...what a waste of 20 years
« on: Mar 15th, 2007, 3:58am »
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Hello everyone-
 My hubby has had CH since 1989...they were first diagnosed correctly in approx 1999. He has been through the mill, from acupuncture (where he left and got a headache) to lithium (which actually made him depressed enough to call me crying just because) to stadol, oxygen, verapimil, amerge, prednisone and imitrex to name a few that come to mind. The only ones he truly believes works for him are high doses of prednisone and imitrex injections. and I'm sure you can all relate to the cost for the imitrex and the fact that most docs/insurance companies don't want to prescribe/cover very much. we've been through the letters of medical necessity and paying out of pocket for just one box (if i remember it was just over $200.00).
 
I just wanted to introduce a little, my hubby is actually a member of this site and has been since 2001 but I wanted to try to gets some tips/advice or even just a hey dare!  
 
He is in his cycle now and has been since early December 2006. he is currently on 60mg prednisone daily and imitrex injections as often as needed (and yes more days than not he exceeds the twice a day) he recently visited a headache doc and also began depakote and melatonin...but now at these amounts he is still getting breakthrough CH.... having been through eight of his ten cycles i mentioned verapamil which previously worked through 2 of his cycles...or again trying oxygen which has never worked for him (i think he was using it incorrectly)  
 
 
any thoughts/suggestions/ideas?????? he is getting pretty scared now of running out of imitrex and/or prednisone (which has happened before from self medicating....and adrenal shock is no fun)  
 
Thanks to all and i wish each of you PFDAN!!!!!!!!
 
 
P.S. anybody ever tried Stadol nasal spray? he did a few cycles ago. it went something like this...he felt a CH coming on, he sprayed the Stadol in one nostril and then put his head back, he then woke up 2 hours later HA free and weirded out....he hated it but my thoughts were....HE SLEPT THROUGH A CH....which just does not happen...but it did...just figured i'd share that!
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Re: Tenth bout with CH...what a waste of 20 years
« Reply #1 on: Mar 15th, 2007, 8:06am »
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Hello Michelle
Its nice to meet you and I'm very glad you've come along to join us, we value supporters highly here  Smiley
I'm both, a sufferer and a supporter so I get to walk on both sides of the fence, I know I'd sooner be suffering than watching and my hat goes off to you and my heart goes out - we know what YOU go through as well as your other half so please don't ever be afraid to say you feel miserable  or anything, reading some posts here will prove you have that right!
 
You mention your hubby uses high dose pred which was a huge red flag with warning lights and whistles for me - as I can see you are aware pred is a bloody nasty drug and is not meant for long term use OR for use more than once or twice a year maximum on a taper basis. Its usually used in conjunction with starting a prevent such as verap or depakote. How high a dose did he get up to with the verap? 480mg is about the median with alot of people going as far as 960mg to get relief. Anything less than 480mg is not commonly effective.
 
Has he ever tried Zomig nasal sprays? They are another triptan like Imitrex but the big difference is how long the effects last for - Imigran lasts a maximum of two hours (its the oldest triptan and a veritable dinosaur) whereas Zomig lasts up to twelve hours and you can use up to three per day which is a lot more help. They take about ten to 15 minutes to kick in but then they are sort of like an energiser triptan in that they just keep going LOL
 
O2 if used correctly (15 LPM and a non rebreather mask for starters) is a godsend. We're happy to give you all the tips on that we can if you think you could get him to try it again.
 
Stadol - is not a drug we have here so I can't comment on that as such however I will say that narcotics shouldn't have a regular use in CH as they simply don't work in a way to stop the attack.  
 
In a hit the blood vessels on the affected side of your head swell by up to 20x their normal size. What we need are vaso-constrictors to reduce them asap and get rid of the pain. Triptans, O2 and even strong coffee or high energy drinks such as red bull (or store brand equivalents) are ALL vaso constrictors. If used early enough coffee and red bull* will abort a hit for me beautifully as will O2 which I swear by. The longer you let a hit ramp up, the more you let those blood vessels swell - the harder it will be for ANY med to work so the key point to remember with CH is attack IT at the first twinge!  
 
(*I use cheaper options but its quicker to just call it that!)  
 
Narcotics don't take away the pain - they take away you. That's why your hubby slept through a hit - he was doped up to the eyeballs and beyond. I've tried morphine for a hit in the past and it was awful, absolutely awful for me. It didn't stop the pain, it just stopped me from having the ability to work out how to use my body. I couldn't work out how to move my hand to scratch my nose. I felt fully cognitive inside a body I couldn't work and I was in awful pain which was no doubt "worse" because I couldn't deal with it to remove it and I was terrified. For me - I'd never do it again.
 
And then there are addiction issues to consider too...
 
We'll help you help him - and we'll help you understand and help YOU too okay?!
 
Take care of yourself as well
Helen
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Re: Tenth bout with CH...what a waste of 20 years
« Reply #2 on: Mar 24th, 2007, 10:58pm »
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    Quote:
Narcotics don't take away the pain - they take away you.

 
 
      AMEN.
 
 
Quote:
 
O2 if used correctly (15 LPM and a non rebreather mask for starters) is a godsend. We're happy to give you all the tips on that we can if you think you could get him to try it again.  

 
    If he wasn't using it correctly this just may be his 1st. line of offense.  Please give it another go as it helps 70 % of us and it has no side effects, it's cheap and is a whole lot easier to use/get/ and abort.
 
 
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Re: Tenth bout with CH...what a waste of 20 years
« Reply #3 on: Apr 19th, 2007, 8:36am »
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Don't know if this will help you much, but if he's been in cycle since early december it's been a long time. My cycle started new years eve and lasted until 3 weeks ago. So it was around 13 weeks. I only used Imitrex 11 times during the whole cycle, and nothing else. Usually my cycle last 4 - 5 months, and I think it is due to taking alot of meds. Anyway that's just my experience, it's not for all. I find I can cope with the pain most of the times by doing the dance, punching the air and watching the clock. Attacks usually ends in 45 - 60 minutes, and then blissSmiley Hope he breaks out of cycle soon!!
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Re: Tenth bout with CH...what a waste of 20 years
« Reply #4 on: Apr 19th, 2007, 10:23am »
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Has he tried putting ice on the neck and temple ? plus drinking a lot of water ?
 
Also energy drinks with taurine such as red bull can help abort the smaller attack.
 
Take care and painfree wishes to you.
 
 
Annette
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Patrick_A
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Re: Tenth bout with CH...what a waste of 20 years
« Reply #5 on: Jul 6th, 2007, 10:26pm »
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Sounds to me like he is on the right path.
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