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Cluster Headache Help and Support >> Getting to Know Ya >> New here and scared to death http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1219232716 Message started by worst pain ever on Aug 20th, 2008 at 7:45am |
Title: New here and scared to death Post by worst pain ever on Aug 20th, 2008 at 7:45am
hello
I am so relieved to have found this site.I am(or was) a healthy and relatively happy 37 year old man. I was working out 5-6 times a week but thats all changed now that I have a "beast" of my very own. I have been basically house bound for the last eight weeks. I am either in excruciating pain or waiting for it to start again.I have been prescribed alot of drugs in the last eight weeks(verapimil,compazine Imitrex and some others I cant really remember)The imitrex works to take the pain away but after 6 hours I feel the Beast awakening and It starts all over again. I am at the point where I just don't know what to do. I started to think I had something wrong inside my head but a ct scan ruled that out and I was tested for lymes disease which was negative so now I'm waiting to see a neurologist. I am at the end of my rope I haven't slept in what seems like weeks and weeks I feel like I'm going crazy. I am not usually an emotional person but lately I just start crying for no good reason.I feel like my life is over and I want to run out into traffic. I am also not a religious person but I now find myself praying to god often when the beast is with me it doesn't usually help This illness or sickness or whatever the hell it is is taking its toll on my relationship with my wife and 6 month old son I. She just stands by helplessly and watches me turn into the shell of the person I used to be.I know these headaches are cyclical and are supposed to end but I just don't beleive it.I'm relieved to know I'm not alone (I don't mean I'm relieved to know that others are suffering like I am just glad that I have found an outlet to turn to in the middle of the night when I feel like I'm dying) I dont know what else to say so I'll just say thanks for now |
Title: Re: New here and scared to death Post by Ungweliante on Aug 20th, 2008 at 8:35am
I'm so sorry you're suffering through this!
I know what you're going through...the pain can be quite immense, but if I may give you some advice: DON'T WAIT FOR THE PAIN TO BEGIN AGAIN! When you're concentrating on the pain even when you don't have it, it takes your whole life away. It's can be difficult to adjust to having chronic or near-chronic pain, but your life isn't over. You might not be able to do all the things you used to do, but you can do a lot of things when you're not in pain. I did a lot of research and concentrated on the CH for maybe 8 months since it started. I practically spent all my waking moments trying to find a cure for it. Since then, I've just begun living my life normally during the time I'm not in pain. I can still go to the movies, clean my house, make dinner, work part-time, have fun with my friends and family, etc etc. By accepting my condition as a new part of my life and stopping concentrating on it when it's not present, the quality of my life became far better. You can do these things as well! I know it's hard to do, but try to accept the condition as well. Look for a cure, but don't spend your entire time concentrating on the pain. Concentrate on having fun and living your life as best you can. Believe me, it's really important. Acting like your life is over is a self-fulfilling kind of thing. - Best wishes and hope you'll feel better soon, Rosa |
Title: Re: New here and scared to death Post by Chad on Aug 20th, 2008 at 9:12am
Hey man, sorry to hear about the beast. We all know where you're coming from and it sucks. As Ungweliante said, don't wait for the next one. Enjoy your PF moments and just getting your mind off it alone helps. Deal with the beast as he comes. Do research and READ a ton on this site. You'll learn many ways to fight this prick. Keep up on the exercising too. I do these pumping exercises or just a simple jog to get the blood flowing away from my head. I use Imitrex usually an hour before I know a CH will come on since mine are like clockwork.
Is this your first cycle ever? How many CH do you get a day? Do not get down and educate your wife so she knows how to deal with it too. My wife of 4 years is very educated with the CH and has been well before we were married. I have an 19 month year old boy myself and he alone takes my mind off of CH. I'm currently in remission, but i'm here to support everybody because I look at it like we're a team. Our enemy is the beast and he can be beaten down, he will always get up again, but we're prepared, we're positive, and we WON'T let him ruin our lives. Read this site thoroughly! Wishing you PF days ahead :) |
Title: Re: New here and scared to death Post by BarbaraD on Aug 20th, 2008 at 9:54am
One thing you didn't mention... Have you tried O2? That's the first choice of most of us here.... 15-25 liters a minute with a NON-REBREATER mask. If your neuro didn't put you on that first thing - get a new neuro!!!!! That's the first line of defense....
Also melatonin at night before bed.... start with 3-5mg and work up to 15-20mg. It helps you get thru the REM sleep (where the CH hits) and lets you get some rest at night (most of the time). Also have you tried RED BULL (or another energy drink with caffeine and taurine - at least 1000mg of taurine -read the lable). It will sometimes abort a hit if you get to it when it starts. I use it with the O2 and it works most of the time. Be careful with pain meds - they will cause rebound headaches and really don't help anyhow. How much verap are you taking. Most have to take a large dose for it to do any good. Ice packs (or heat - your choice) help some. I keep frozen peas in the freezer - they fit wherever I need them and are about the easiest ice pack I know of. Stick around, ask questions, read -- we're all here to help... and you're not alone anymore. Hugs BD |
Title: Re: New here and scared to death Post by Jean on Aug 20th, 2008 at 10:06am
Hi and welcome,
I just wanted to offer a warm welcome to you. Sorry you are suffering. You have already been given some good advice. Please stay around and learn all you can. The help I received from the wonderful people here saved my life. PF wishes, Jeannie |
Title: Re: New here and scared to death Post by Karl on Aug 20th, 2008 at 10:10am
I am a christian and I pray and pray, yet this thing still comes. so instead of praying for myself , i will pray for you.
the good people on this site will give you great information most of which works for me. what i will add is the please arm youself with knoweldge, support, and a good dr (can be hard to find). this will help reduce the anxiety and fear. you are not alone. maybe have your wife read here too, so she can get some info and support for her. |
Title: Re: New here and scared to death Post by Karl on Aug 20th, 2008 at 10:11am
I am a christian and I pray and pray, yet this thing still comes. so instead of praying for myself , i will pray for you.
the good people on this site will give you great information most of which works for me. what i will add is the please arm youself with knoweldge, support, and a good dr (can be hard to find). this will help reduce the anxiety and fear. you are not alone. maybe have your wife read here too, so she can get some info and support for her. |
Title: Re: New here and scared to death Post by kittysezmeOUCH on Aug 20th, 2008 at 10:51am
This is a great place for support. These people will help you find all sorts of information and make recommendations that one would have never thought of before. I am one of the lucky ones...I am episodic the worst beginning October 18th and lasting a mere 3 days. There is so much information you can go on overload. I have spent alot of my free time reading up on CH and it is mind boggling. Read as much as you can and if you have any questions ask...they are more than happy to oblige.
HAVE a HAPPY and HOPEFULLY PF DAY!!! :) |
Title: Re: New here and scared to death Post by Guiseppi on Aug 20th, 2008 at 10:52am
Welcome to the board, you're in a dark place right now, one we've all been in. There is no cure yet for these things but they can be manages. It just takes a lot of patience, which is hard to come by when your head is exploding.
You need to get the oxygen prescribed, that should be your first line of defense. I can kill an attack in less then 6 minutes using the oxygen. You need to get on a good preventative medication, one that will slow down the attacks a little. The more common ones are the verapamil, lithium and topomax. See if your GP can put you on a 2 week prednisone taper to get you some immediate relief. Most of us find prednisone will offer a temporary reprieve from the beast while we wait for our preventataive medication to take effect. Not something you should stay on long term cuz it beats up yourt body but you sound like you need a "rest and recovery period" in a really bad way. They do end, WE really do understand, hang in there. :'( Guiseppi (edited for spelling..as usual!) |
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