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Title: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 5:27am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by chopmyheadoff on Aug 25th, 2006, 6:55am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BarbaraD on Aug 25th, 2006, 7:01am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by chewy on Aug 25th, 2006, 7:32am Break out the big guns. Imitrex injection. |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 7:36am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 7:48am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by chopmyheadoff on Aug 25th, 2006, 7:50am on 08/25/06 at 07:32:15, chewy wrote:
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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by chopmyheadoff on Aug 25th, 2006, 7:51am BTW it might be worth asking the neuro if he can up the dose of verapamil |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 8:35am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by LeLimey on Aug 25th, 2006, 8:43am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by Bond007 on Aug 25th, 2006, 8:45am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 9:51am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 9:56am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by georgej on Aug 25th, 2006, 10:38am on 08/25/06 at 09:56:29, BB wrote:
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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by seasonalboomer on Aug 25th, 2006, 11:12am 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by Bond007 on Aug 25th, 2006, 11:39am on 08/25/06 at 09:56:29, BB wrote:
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 [smiley=twocents.gif]. I much prefer an anti-depressant. |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 12:11pm 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by georgej on Aug 25th, 2006, 12:16pm on 08/25/06 at 12:11:21, BB wrote:
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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 12:21pm Oh George, Now I am really crying ... :'( Annette |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BobG on Aug 25th, 2006, 12:35pm 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BlueMeanie on Aug 25th, 2006, 12:36pm 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by Bond007 on Aug 25th, 2006, 2:15pm 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by Bond007 on Aug 25th, 2006, 2:28pm on 08/25/06 at 12:11:21, BB wrote:
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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by chewy on Aug 25th, 2006, 4:00pm Quote:
Oh no! Not me personally. I'm with you. Kip 3 and I'm shooting the bastard. |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by prcole18 on Aug 25th, 2006, 4:37pm 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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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 6:18pm Thank you very much everyone for your precious advices and support. Maybe thats what we are doing wrong. My DH tries to put up with the pain and wont take anything for it until it becomes really bad. Quite often the pain would subside back down but then he is so tired with the fight, and when it continues to go all the way to a KIP 10 its a bit too late for the medication to work properly? We are going to try today and hit it when it reaches a 4,5 and see if it will make a difference. He says sometimes it gets from a 3 to a 9 very quickly and its hard to gauge which one is which, but he will try. Thanks again everyone. Wishing all of us painfree days and nights. Annette |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 6:22pm Oh and he does have a NON rebreather mask. I am sorry it was a typo. When the gas company first delivered the 02 tank they supplied only the normal face mask. Then I read from here thats its important to get a proper non rebreather one so we ordered one from the medical supply company and it has made a HUGE difference. Thank you very much for all the most precious advices. Its wonderful to have people with REAL experience to share their tips. Neurologists dont have a clue when it comes to practical things so this forum has been a real God send. Annette |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by kevinpix on Aug 25th, 2006, 6:27pm Most of my hits were KIP 8-10, 3-4 times daily. All you can do is keep ice packs ready, or whatever he uses, ae nd probably hide the knives and other dangerous items. I tried to "cut out" the pain with a knife, ended up being sent to a hosp., they thought I was trying to kill myself. Had to "break out" , jump fence, and walk home 11 miles. Just be there and don't get your feelings hurt by what he says and does during an attack. It's the beast coming out, not the man you love. Although he may not be hurting at this moment, he will always suffer from pain. Try to be there for him, I know it's hard. Even if he can't tell you, I know he appreciates you! Hope all goes well, let us know! |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by Jobette on Aug 25th, 2006, 6:30pm Annette, your husband CAN NOT outwait this thing. :o it is all about timing. if he doesn't take the meds in enough time he may as well not take it because you end up having to go through it (the headache) only to feel the effects of the meds after the headache has sudsided. :'( |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by Jonny on Aug 25th, 2006, 6:32pm As soon as I feel it coming I mount a counter attack.....every time!!!! |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 25th, 2006, 6:46pm Hello Kevin, Jobeth and Jonny, Thanks for your replies and support :-*, much much much appreciated. I printed the pages out to my DH and he was very touched by the amount of support all of you are giving us both. It put a smile on his face for the first time in days. You dont know how happy I am to see that smile. :) Unfortunately he still gets blurry vision and finds working on a computer difficult so he cant post right now. He sends his appreciation to you all and will come to the forum once the blurry vision subsides. We will definitely try to shoot the beast as soon as it rears its ugly head high enough to make a good target . I will be back later to report. Wishing you all painfree days and nights. Hugs all round. Annette |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 26th, 2006, 2:01am Hi all I am very happy to report that it worked ! MY DH started to feel one comming up about 1 hr ago with sensation of heat on face and neck and back, with a light pressure building up in the head. It got to about a 2-3. He drank 1 cold Red bull and got on the 02, which caused the headache to subside within 10 mins. About 30 mins later it started back up again and this time quickly got to a 5-6 despite the 02 so he jabbed himself in the leg with an Imigran injection. Well, he only had a few spikes of pain and the drilling stopped completely quickly. Afterwards he had some residual but fairly strong sensation of burning and pressure in the head behind the eyebrow. But no KIP 10, not even an 8, fantastic ! Thank you very much everyone for sharing your tips. THANKYOU THANK YOU THANK YOU. Now pray to God that he wont get another attack in a hurry. Hopefully he will only get 1 or 2 a day so that we can control it this way and that the preventive meds will work much better soon. Also pray that the cycle will soon cease. Painfree prayers to you all. Annette |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by mynm156 on Aug 26th, 2006, 12:11pm I cry like a baby and scream like a madman WISH I HAD A GUN then usually end up on the floor rolling around or THRASHING about. MYNM156 |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 27th, 2006, 3:03am Hello MYNM156 That is exactly what my DH used to do a few days back. But since he has 02 and with the imigran injection ( using the Imitrex tip so that 1 injection lasts him 3 uses instead of 1 ) and with the practice of using both early as soon as the attack got to a KIP 4,5 then he has not had a KIP 10 in the last 2 days. I pray to God that his cycle and everyone's cycle will end VERY VERY soon, in fact will end NOW if at all possible. Painfree wishes to you. Take care. Annette |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by Bond007 on Aug 28th, 2006, 8:40am Annette- I am just ecstatic to hear that DH was able to stump the Beast and get some well needed relief PF time!! It's success stories like yours that keep the rest of us going! Congrats and I'm glad you both were able to find help and solace here. Here's wishing you both many more PFDAN's! |
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Title: Re: IS THERE ANYWAY TO COPE WITH A KIP 10? Post by BB on Aug 28th, 2006, 6:23pm Thank you very much Bond007 for your kind words :-* Medication success is one thing but abundance of emotional support is what stops the suffering. I have learnt that there are 2 major components to CH. One is the physical side of things with the head pain being the centre of it , then the physical drain on ones strength from chronic lack of sleep. But its the second part with the emotional drain that would prolong the suffering. The fear of the pain itself, the fear of what and when the next attack is going to be or be like, the worry about work, money, children, the frustration of ones loss of control and independence .... that are so much more difficult to cope with. The physical pain will stop, even without medication and it will not kill you . But the associated emotional strain may not stop and its what can literally kill you as it makes you suicidal. Medication doesnt help with the emotional part very well at all. One can take antidepressant or antianxiety to stop the extreme of emotion but one will not be free nor truly happy on them. For us, we found that its the understanding and loving support that we received and continue to receive from here that helped us through the emotional battles and kept us sane. Its what really save lives AND souls. Thank you, all of you very very much. We will try our best to be around and give back as much as we have received. Painfree wishes and prayers to all. Annette and Daniel |
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