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Topic: IS THERE ANYWAY TO COPE WITH A KIP 10? (Read 824 times) |
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BB
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IS THERE ANYWAY TO COPE WITH A KIP 10?
« on: Aug 25th, 2006, 5:27am » |
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Hello everyone,
My DH is now into his week 5 of the first diagnosed cycle. He is starting to handle the attacks much better and is no longer panicking when they come.
He is handling the hits up to a KIP 8 very well, but when it hits 9 and 10 he just cant do anything, on floor screaming, rocking, banging head, begging me to kill him ... 
He is now on Verapamil, Lithium and Lyrica and they seem to help reducing the total number of hits and the intensity of the pain, but still once a day he would get one that would rocket to KIP 10 regardless of what med he takes.
Just want to know if there is anyway one can "handle" a KIP 10 hit ? Or is it just a matter of enduring the pain until the beast stops by itself?
Any advice is greatly appreciated.
Thank you very much and painfree wishes to you all.
Annette
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chopmyheadoff
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #1 on: Aug 25th, 2006, 6:55am » |
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just the sound of that word sends shivers up my spine.
frankly , no, there is nothing you can do.
It is quite literally hell on earth.
im sure he has his "coping" methods ie banging, rocking etc
i usually end up on my knees with the side of my head stuck into the floor, putting pressure on my neck and sliding along with my knees dribbling and swearing and crying.
sad but true
pain free prayres to him
chop
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BarbaraD
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #2 on: Aug 25th, 2006, 7:01am » |
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Try a can of Red Bull at the onset of the HA.
You didn't say if he had any O2. Might try that also (on a high LPM and with a non-rebreather mask or a Clustermask).
Wishing him PF days ahead.
Hugs BD
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chewy
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #3 on: Aug 25th, 2006, 7:32am » |
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Break out the big guns.
Imitrex injection.
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BB
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #4 on: Aug 25th, 2006, 7:36am » |
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Thanks folk,
He is on 02 with a rebreather mask which helps a lot . Red bull doesnt seem to help him though.
He can abort most of the attacks now with 02 and Imigran but still some would break through all the way to a 10 regardless. 
Annette
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BB
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #5 on: Aug 25th, 2006, 7:48am » |
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Hi Chewy,
Occasionally the imigran ( imitrex ) injection doesnt work either.
Some of those attacks just seem to escalate all the way to a KIP 10 no matter what we throw at it, or are we doing something wrong ?
Annette
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chopmyheadoff
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #6 on: Aug 25th, 2006, 7:50am » |
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on Aug 25th, 2006, 7:32am, chewy wrote:Break out the big guns.
Imitrex injection. |
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do you really wait for a k10 to have a stab of trex ??
i do it for anything above about a k3 !! 
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chopmyheadoff
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #7 on: Aug 25th, 2006, 7:51am » |
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BTW it might be worth asking the neuro if he can up the dose of verapamil
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BB
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #8 on: Aug 25th, 2006, 8:35am » |
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The problem is he is still getting 3-4 attacks per day, and he can only use 2 imigran every 24 hrs, so we are really saving the needle for the bad ones.
Thanks Chop ( sorry I dont know your name ), I will ask the neuro to see if we can up the verapamil, he is on 640 mg daily alreeady though.
Annette
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LeLimey
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #9 on: Aug 25th, 2006, 8:43am » |
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Annette there are many many people on as much as 960mg of verap a day. others have success combining verapamil and lithium, it would certainly be worth a discussion with the neuro.
Is there any possibility of either DHE or GONB (Greater Occipital Nerve Block) either? Both would be worth investigating. I didn't have much faith in GONB until 3 friends in a row had it done here in the last couple of months with quite impressive results.
Hope it helps!
Helen
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Bond007
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #10 on: Aug 25th, 2006, 8:45am » |
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I use Stadol NS even though most will say that CH shouldn't be treated with narcotic pain relievers. But, 2 sprays, one up each nostril, and I'm floating for a few hours at least. Most times, I'll only need 1 spray, however. It's also fast acting. I get relief in a matter of seconds.
THERE ARE SERIOUS RISKS!!!! HE NEEDS TO DISCUSS THIS DRUG WITH HIS DOCTOR!!!
Stadol is a synthetic opiate and HIGHLY addictive. It has also been proven to cause death if you overdose.
I only even suggest it because it has really helped me to make it through many Kip 10 hits. Then again, I am a real whimp when it comes to pain.
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BB
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #11 on: Aug 25th, 2006, 9:51am » |
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Thank you very much everyone for your wonderful support and suggestions, 
He is not able to read the computer screen now as he has blurry vision from the Lyrica but I print out the pages in big font and he can read it like that.
He had been given Pethidine injections which is the same as Stadol which he said takes the pain away for a little while but he gets very spacy with it and yes we worry VERY MUCH about the addiction part.
Will talk to the neuro about the other options though, thanks Helen for suggesting.
You guys rock !
Painfree wishes to all of us .
Annette
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BB
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #12 on: Aug 25th, 2006, 9:56am » |
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BTW, the reason I ( we ) worry about those KIP 10 is that he gets so down and depressed and even suicidal when getting them , its scary.
Thats why I thought if there is some ways to handle them better, not just with medication but with mental attitude, concentration, distraction etc whatever then it would be really helpful.
However it sounds like when one is in THAT much pain, all will power and logic goes out the window?
Annette
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George_J
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #13 on: Aug 25th, 2006, 10:38am » |
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on Aug 25th, 2006, 9:56am, BB wrote:BTW, the reason I ( we ) worry about those KIP 10 is that he gets so down and depressed and even suicidal when getting them , its scary.
Thats why I thought if there is some ways to handle them better, not just with medication but with mental attitude, concentration, distraction etc whatever then it would be really helpful.
However it sounds like when one is in THAT much pain, all will power and logic goes out the window?
Annette
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From my experience (and my experience only) most non-medicating coping techniques tend to break down when the hit is over an 8, say. With practice and very hard work, though, he may be able to begin using coping techniques as the pain is ramping up, and evade a 9 or 10. Most of us get there after a time. Sometimes things break through to a level that is uncontrollable, though--particularly in the center of a cycle, which is where it sounds like he is now.
Depression and begging for death at extreme levels of pain is common to all of us. I don't think there's a single person who suffers these who hasn't hit those levels at one time or another. Sometimes there's nothing to be done but to wait until you reach the other side.
It's the nature of the Beast. If it helps, ask him to think of them as storms. They happen, and eventually they are over. There's little you can do sometimes but hunker down and hold on. But you do survive. It ends. And things look better afterward.
My heart goes out to your husband. This is something that truly is beyond normal human endurance, and it's an impossible thing to expect from anyone. In time, he'll grow stronger. The fear and anxiety will subside. All that will help him to strengthen himself for what lies ahead. It doesn't happen overnight, though. I haven't forgotten, although I've had CH for a long time.
Given time, his attitude will alter, and his ability to concentrate and cope will increase. He will become a CH warrior, and not a CH victim. It sounds as if he's learned a lot already--I think he's already at a place it took me years to reach. I believe he's very much on the right track.
Best wishes for you both,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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seasonalboomer
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #14 on: Aug 25th, 2006, 11:12am » |
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I agree with George fully.
It's been quite awhile since I've had one break through to those levels. Not because I haven't had some bad cycles but because I have become a FREAK about making sure I have my arsenal ready to head them off as much as possible.
I know they can still break through to those levels even with injections and what have you, but focusing on getting the right weapon in hand at the best possible timing for its effect is what I've become "all about" now. First shadows, I'm checking the fridge for the Red Bull. If they aren't budging I'm setting up in the closet with my Clustermasx and O2. If that doesn't work after a couple of go-rounds then I'm jabbing. You, get my drift I suppose.
This is where the "mental prep" and attitude is one of "TAKE THIS YOU @#$%%^"!", and then, "Okay, well then TAKE THIS!" It puts the fight into the fight.
Best of luck.
Scott
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Bond007
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #15 on: Aug 25th, 2006, 11:39am » |
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on Aug 25th, 2006, 9:56am, BB wrote:BTW, the reason I ( we ) worry about those KIP 10 is that he gets so down and depressed and even suicidal when getting them , its scary.
Thats why I thought if there is some ways to handle them better, not just with medication but with mental attitude, concentration, distraction etc whatever then it would be really helpful.
However it sounds like when one is in THAT much pain, all will power and logic goes out the window?
Annette
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As for the mental state, that's the biggest reason why I'm also on anti-depressants. Thank God for those damn little pills! If it weren't for those mood enhancers, I may have been dead a long time ago instead of dealing with these damn headaches. My "happy pills" help me to focus on the fact that the headache does in fact eventually go away and won't last forever. I will have some relief, albeit brief, but they help me to realize that my life is precious and that I want to be around for my family as well.
The Lithium he's on is more of a "mood regulator". It's most commonly used to treat bi-polar disorder as it levels out your emotions. You no longer feel extreme highs or extreme lows. I was on it once before when I was diagnosed as bi-polar. It made me feel very "blah" all the time. I'm no doctor, but based on my own personal experience with Lithium, I can only wonder if it might not be contributing to his "blah" feeling as well. Just my  .
I much prefer an anti-depressant.
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Sometimes life bites you in the ass -- that's what drugs are for!!
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BB
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #16 on: Aug 25th, 2006, 12:11pm » |
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Thank you very much George and Scott and Bond007 for your wonderful supporting words.
I have found so much solace from the forum. Its literally my life jacket whenever I feel like the beast is going to drown us both.
Bond007, may I ask you what type of antidepressant are you on?
As this is his first diagnosed cycle, we dont really know where he is in it and how long it will last for. We will just have to try to brace it until the storm wanes I guess.
He likes me to be with him throughout the attacks and would call for me if I am not there. But then when I see him going through a KIP 10, it really breaks my heart and I would cry. I dont want him to see me cry though so I would try to leave the room, then he would call out for me again, although at times there is really nothing I can do for him right there and then, so the tears flow some more ...
I really wish I could take the pain for him. Having been through 2 childbirths may be it wouldnt be as bad for me ?
Annette
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George_J
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #17 on: Aug 25th, 2006, 12:16pm » |
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on Aug 25th, 2006, 12:11pm, BB wrote:
I really wish I could take the pain for him. Having been through 2 childbirths may be it wouldnt be as bad for me ?
Annette |
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But it's his alone, and you can't carry it for him. Think of it this way--if you could take it from him and take it on yourself, do you think he could endure seeing it, knowing what you're going through?
If one of my loved ones could take it from me and take it into themselves, I don't think I could stand it.
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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BB
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #18 on: Aug 25th, 2006, 12:21pm » |
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Oh George,
Now I am really crying ...
Annette
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BobG
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #19 on: Aug 25th, 2006, 12:35pm » |
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Hi Annette,
Above you said his mask was a rebreather. Did you really mean to say a NON-rebreather? It's the NON-rebreather he should use. It'll give 100% O2 without mixing in 'normal' air. He needs to jump on it at the first twinge of an attack.
Has he tried hot or cold packs?
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BlueMeanie
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #20 on: Aug 25th, 2006, 12:36pm » |
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Hi BB,
I've learned that there is a trick to the Trex usage by trial and error. First off does he split the dose ? If he's not he's wasting twice as much Trex. It will work on a 1/2 shot just as good as a whole shot. See the Imitrex tip to the left of this page.
When he gets to level 2 get the Trex out with qtip ready to go. Wait as the CH rises higher on the KIP scale. I've learned if you either take it too soon or too late it may not be effective. The second you get between the level 5 & 6 jab immediately. Do not wait any longer than that. He may need to adjust when to jab as he figures out what works best for him. While he's waiting for the jab, he should be on the 02 and pressing ice on the CH side.
The Stadol is not a Triptan and I wouldn't recommend it except for last resort. Prior to Triptans, that was about the only thing available. It does not work the same. It is a narcotic that is used to knock you out.
My 2cents... hope he gets relief soon. PF vibes.
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Bond007
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #21 on: Aug 25th, 2006, 2:15pm » |
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BB-
My anti-depressant is called Lexapro. It's an SSRI (selective seratonin re-uptake inhibitor). There's been some studies that show some pretty nasty contra-indications though between SSRI's and triptans, like Imitrex, so Lexapro might not be the right drug for him. Besides, what works for me will not necessarily work for your hubby. He may need to try a few others out before he finds the one that's best for him. Typical rule of thumb is "third try is the charm." Just like CH, we all react differently to different anti-depressants and it also depends on how well each of us can deal with the side effects of those anti-depressants as well.
And, like BlueMeanie said, the Stadol is a last resort. For me at this point, my neuro is using it as an interim pain reliever while he tries out different med combos to see what is going to control my CH best. Once we've got the "cocktail" right, then we'll back off the Stadol.
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Bond007
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #22 on: Aug 25th, 2006, 2:28pm » |
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on Aug 25th, 2006, 12:11pm, BB wrote:
I really wish I could take the pain for him. Having been through 2 childbirths may be it wouldnt be as bad for me ?
Annette |
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I can understand your point of view, but it would crush my heart to see my spouse endure my pain. In an odd, and perhaps masochistic sort of way, I'm relieved that it's me who suffers this and not my wife. I know I couldn't bear it to watch her. I can only imagine what goes through her mind and heart when I'm in unimaginable pain. But, I will tell you one thing, BB. I get through my attacks with her help because she is strong and she is by my side throughout many of my hits. She never lets me see her cry. She never lets me see her pain. At least not during an attack. We talk about it them later when I'm feeling slightly better, but only briefly so that the Beast doesn't control my "free time" as well.
She's my base and my rock. I could never get through this without her. Your husband needs you too. I can only imagine that it must be tough. Somewhere from the depths of your soul, you'll find the strength to fight back the tears and become a pillar of strength when he needs you during the most intense moments. Just always remember. This WILL end eventually. There WILL be some pain free time. ENJOY that time as much as possible.
Wishing you and your family all the very best! PFDAN's!
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chewy
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #23 on: Aug 25th, 2006, 4:00pm » |
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Quote:| do you really wait for a k10 to have a stab of trex ?? |
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Oh no! Not me personally. I'm with you. Kip 3 and I'm shooting the bastard.
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prcole18
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Re: IS THERE ANYWAY TO COPE WITH A KIP 10?
« Reply #24 on: Aug 25th, 2006, 4:37pm » |
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Agree with chopmyheadoff anything above a 3 or 4 & that Imigran jab is straight in my leg.... never ever lets me down!
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