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Title: Back again... Post by dkmy1903 on Nov 18th, 2007, 8:16am Hello everyone, Last I was here was June 2006. Everyone here was very helpful, as usual. I don't actually have any deep insights or therapy advice (I use several preventatives and Trex for the attacks themselves), just need to let off some steam with people who can understand. I have been on a new cycle for the past 4 weeks: 24/7 shadows, gulping down Ibuprofen like M&M's, attacks at least 2 times a day, wakes me up at night, usually between 2 am till 4 am, 10 kip like there is no tomorrow. A lot of the people here describe the pain as the beast, but I feel that it turns me into some kind of demon - can't stand light or noise of any kind during attacks, can't stand still or think coherently for hours, am terribly impatient with my kids (12 and 9 - very supportive, but still...). My wife is 7 months pregnant with our 3 child ( a girl! Hurray!) so I can't bring myself to wake her up or bother her too much - so it's head banging excruciating pain as far as the eye can see (or not really see since its half closed and running). I hope it will be over before the baby arrives. I can't imagine going through the first months with a newborn and dealing with this nightmare at the same time. So, sorry I unloaded all this stuff on you long suffering people. But then again, who else if not you? |
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Title: Re: Back again... Post by DennisM1045 on Nov 18th, 2007, 8:44am Sorry to see your pain has returned. Ibuprofen isn't going to help. Stop taking it. That may be a source of your longer lasting headaches. They could very well be rebounds. Have you tried energy drinks yet? How about Oxygen? These work very well for me. Anyway, no worries about venting. It's what we do here. Good luck with the babies. -Dennis- |
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Title: Re: Back again... Post by ski2k on Nov 18th, 2007, 9:55am Sorry you had to find your way back. We all seem to do that eventually! I'd just like to second the motion: try energy drinks with taurine and caffeine in them. Also try the O2. These are the wonder drugs that have seemed to work wonders for me! E-drinks during the day, and O2 at night. Knock that beast on his ass within 10 minutes!! Hope you find relief soon, and hope the new baby is healthy and happy!! Best wishes, Adam Edited to add: I don't know why I didn't put this in the first time... I totally agree with you feeling like you become a demon during hits. I've often told people I feel like I'm possessed while mid kip9-10. The pain just gets to be too much to handle, and you feel like you totally lose control. Yelling, screaming, threatening suicide if it doesn't stop, sharply telling the kids "leave me ALONE!", and when it's all over with.... Feeling sooo bad about it. :-[ You just really don't feel like yourself. Like something else is doing that, and you're just along for the ride. The most important thing, is to TALK to the kids and your wife about it. Over and over. Make SURE they understand it's not YOU doing that, it's just the pain taking over. Be sure to apologize each time, and give them extra love, AND SAY THANK YOU to them!!! Bottom line: You're not alone. We've been there, and we will try our best to help you and your family get through this. Though it feels like it at the time, having CH is NOT the end of the world. Take care, and go get some O2 (need a prescription for it)!! Might be just what you need to fight this thing! The O2 link on the left is highly recommended reading! Adam |
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Title: Re: Back again... Post by dkmy1903 on Nov 19th, 2007, 4:09am Thanks Adam and Dennis for your comments. Adam, could you please describe how you use the caffeine drinks? I mean, do you take them when all hell breaks loose in the middle of the night? Doesn't that disrupt your day? Anyway, I have decided that I refuse to be a victim of this creature, and am fighting back - using a hell of a lot of medication, but fighting back! |
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Title: Re: Back again... Post by DennisM1045 on Nov 19th, 2007, 8:01am I try to avoid them at night. My night hits were limited this past cycle by taking 9-12mg of Melatonin a half hour before bed. I still got hits during the day and these I would use energy drinks on. At the first sign you pound one down and then get on the O2. Worked almost all the time for me. I was able to get my Imitrex injections down to an average of one a week. Good luck... -Dennis- |
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Title: Re: Back again... Post by Guiseppi on Nov 19th, 2007, 10:49am Welcome to the board and by all means vent away! Energy drinks didn't work for me. Those that have success with them say they chug a whole one down at the first sign of a hit. I drove my wife crazy with these thngs for over 10 years, she went searching on the internet and found the old version of this board and saved my sanity. You need to adopt a 2 pronged approach to managing these thngs. 1: you need an effective preventative. Something you take to reduce the number and the intensity of your hits. I use lithium, others use verapamil and Topomax. 2;An abortive strategy. The headache starts, now what? Your first line abortive should be oxygen. It's cheap, no side effects, when you get a night time hit you can kill it with 02 and be asleep in half an hour. Read the link on the left, used incorrectly it's useless, used correctly it's been a life saver for many. I use oral cafergot and the occasional imitrex jab when the oxygen fails me. Get away from the over the counter meds, they'll put you in a vicious rebound cycle. Stick around and welcome to your new home. Get your wife to join the supporter section. My wife loves to log on and bitch about what a pain in the ass I get to be while on cycle. She'll find a lot of comfort with all of our supporters who've been handling these things with us all these years!! Guiseppi |
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Title: Re: Back again... Post by ski2k on Nov 19th, 2007, 4:23pm Looks like others beat me to your question! Like they said... drink it down quickly at the first sign of a hit. For night time hits, O2 usually works better, as it won't keep you up all night. Best, Adam |
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Title: Re: Back again... Post by chewy on Nov 19th, 2007, 5:17pm on 11/18/07 at 08:16:00, dkmy1903 wrote:
A lot of people let off steam since 2006. If everyone bailed out when they are pain free then there would be no one here to listen to you. |
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Title: Re: Back again... Post by dkmy1903 on Nov 20th, 2007, 3:44am Thanks! I 'll try the caffeine drinks. My neurologist is opposed to O2 for some reason, so I'm searching for a another neuro for a second opinion. My preventatives are working better - only a hit per day, but the shadows are my main concern. The attacks themselves are so insane that it's like a state of emergency - I'll do anything for relief and everyone around me is geared to do anything to help. But the constant low level pain which doesn't prevent me from, say, going to work (I'm a sound designer) but makes me irritable and impatient is my main bone of contention with the evil forces that gave me CH. |
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Title: Re: Back again... Post by Guiseppi on Nov 20th, 2007, 7:08am You definitely need a new neuro. Any doc treating CH, who is opposed to 02, is completely clueless. The least amount of side effects, cheapest, most effective treatment and should by far be your first line abortive. Good luck in the doc search!!!! Guiseppi |
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