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Mattrf
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Thank god for my wife and kids who keep me alive.
 
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My wife thanks all of you
« on: Mar 22nd, 2006, 10:45am » |
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I was diagnosed two years ago with CH but at the time just thought the doctor was using the term to describe a bunch of stress headaches he could not fix. I should have found this site then, so back in December I started what I thought was a bad sinus infection and after a CT scan a couple weeks ago wound up back at the neurologist and he told me again that I was having a CH attack and started me on meds. My wife of three year and I also thought that this time and two years ago that they had been caused by stress and this time she took it hard and was blaming herself for the stress of me stepping into a life with to kids and a wife, the kids are 7 and 16 anyone with kids knows how stressful a 16 year old can be. Well she has been seeing a shrink and been on medication since the guilt she felt was so depressing to, you all can understand what she felt like seeing me go through this kind of pain and to think she was the cause, so it felt so good after finding this site yesterday to be able to tell her that this was something many people suffer from and that it was not stress related and she had nothing to do with the cause of the headaches. I also can’t tell you how good I felt being able to remove that burden from someone I love very much and to see the relief in her face. I also feel so much better now that I can recognize what I have and pull from my past history so I know somewhat what to expect and know that I probably have a month or so to go with this cycle then it should be done and then I should have another two years before the monster comes back again, at least that seems to be my history. I feel for those I have read about that have much more frequent attacks, mine may last for months but then I get a long rest from them if I didn’t I think I would go insane. Finding this site is a godsend, not only do I better understand what I have but have told my closest supporters to read it so they also better understand what I am going through so they can also better deal with it. I can’t thank all of you enough, this is a horrible thing to deal with but having you, people that truly understand and can relate and help means the world to me right now.
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There is no stronger a person then one who can deal with brain pain and still function.
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LeLimey
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Re: My wife thanks all of you
« Reply #1 on: Mar 22nd, 2006, 10:51am » |
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Hello Matt,
Its nice to meet you. You and your wife are welcome, God knows we'd all be in a right mess without our families support and I know its very tough being the one who has to watch too.
Tell her to come along and post too, supporters are most welcome and we'll do all we can to help her cope as well as you.
tell us a bit more about yourself, its hard to know where to start with your first post isn't it?
What meds do you have? What works for you etc.. lets see if we can't help you a bit with getting as much pain free time as possible!
Take care, looking forward to hearing more from you soon
Helen
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Mattrf
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Re: My wife thanks all of you
« Reply #2 on: Mar 22nd, 2006, 11:02am » |
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I am waiting to hear back from the doctor now, I sent him a list of some of the meds from this site that people say work best to see what ones we tried or didn’t two years ago.
I wish I had tracked them but there was so many and nothing worked for me at that time.
I have a history of bad sinuses and over the past ten years have had what I thought was a sinus infection about every two years that would not go away for months and that no antibiotics would cure, now I am sure that it was not sinus at all and was CH just misdiagnosed. They always seem to be in the winter and always on the left side. Can’t tell you how many times I have screamed into a pillow thinking my head was going to explode at any moment. Now that I am more informed I plan on tracking things much better to help myself be ready for the next cycle and know what to expect. The unknown was the worst, will it ever go away, is it something really bad like a tumor, you know the routine you put yourself through before knowing what this monster really was. I am going to ask the doctor what medications he gave me two years ago so I can compare to the list and see if any of them match up, but you know how fast doctors respond.
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There is no stronger a person then one who can deal with brain pain and still function.
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LeLimey
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Re: My wife thanks all of you
« Reply #3 on: Mar 22nd, 2006, 11:22am » |
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Okay well while your med-less have a look at some of the remedies people try here that are available in the home so-to-speak! People vary as to whether ice or heat works for them. Personally for me, ice is marvellous, a bag of peas wrapped in a tea towel is a godsend. Others find have a hot shower really helps but thats a huge trigger for me - we all vary.
Sitting in the car with the air con on full whack and your face close to the vents can help alot too.
O2 is my personal favourite abortive, you will simply not believe how well that works until you try it. When used at a high flow of 15 liters per minute with a non rebreather mask or a clustermasx (www.clustermasx.com) I can abort a hit within 5-7 minutes which can't be bad!
Some people swear by Red Bull or other similar high energy drinks. When chugged cold and quick it can abort a hit for you as can strong coffee.
I know I've missed some other "home remedies" out but I trust my cluster family here to add to this for me, I just wanted to get something back to you ASAP before you went offline. Some info and something to try makes me feel better for you than imagining you coping without any help.
You're amongst friends FAMILY here now and you'll never be alone with this again okay?! 
Helen
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Mattrf
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Thank god for my wife and kids who keep me alive.
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Re: My wife thanks all of you
« Reply #4 on: Mar 22nd, 2006, 11:35am » |
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Thanks and it seems to be the hot shower that works for me. I would say you have no idea how much it means to have this site and all you people for support but unfortunately you are in the same boat and do, I would not wish this on my worst enemy, well maybe my worst.
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There is no stronger a person then one who can deal with brain pain and still function.
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Mattrf
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Thank god for my wife and kids who keep me alive.
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Re: My wife thanks all of you
« Reply #5 on: Mar 22nd, 2006, 12:01pm » |
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You said the pain pills don’t work, why is that?
I am sitting here and thinking about it and your right, I take two Tylenol #4’s and it does not seem to make a dent and any more then that and I worry about being able to function and work so I don’t and just put up with the pain best I can.
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There is no stronger a person then one who can deal with brain pain and still function.
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LeLimey
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Re: My wife thanks all of you
« Reply #6 on: Mar 22nd, 2006, 1:41pm » |
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The reason they don't work is those sort of painkillers fight pain in a different way to what we need. Basically (and this is the idiots version.. for my benefit not yours!  ) when you get hit the blood vessels in your brain expand to up to ten times their normal size. What we need are vaso constrictors to reduce that swelling and ease the pain, hence cold, o2 and triptans for instance. These are called abortives as they abort each individual hit. Other meds work on preventing the hits taking place in the first place and these are called preventatives or prophylactics and examples of those are verapamil and lithium for instance.
There is a lot for you to read up on here, there is information on prescriptive and alternative therapies, all of which have benefits and drawbacks in one way or another but by reading about them all you will find the right route for you!
Good luck with it, ask all the questions you want, we'll help all we can okay?
Helen
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maffumatt
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Re: My wife thanks all of you
« Reply #7 on: Mar 22nd, 2006, 2:10pm » |
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Oh good Lord another Matt, glad you found us but sorry your here, Helen gave about as good advice as your going to get here, so I won't add anything other than a welcome.
Matt
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Mattrf
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Thank god for my wife and kids who keep me alive.
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Re: My wife thanks all of you
« Reply #8 on: Mar 22nd, 2006, 2:31pm » |
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Well I let my pain med laps to see if the pain was worse and it was so they do help a bit, not enough to make it go away but enough to make me keep taking them.
Can'r have to many Matt's that for sure.
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There is no stronger a person then one who can deal with brain pain and still function.
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BobG
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Re: My wife thanks all of you
« Reply #9 on: Mar 22nd, 2006, 2:44pm » |
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Welcome Matt. There is a Supporters Corner section of this web site. Some wonderful people there. Maybe your wife would be comfortable talking to other supporters. Of course she is welcome to post anywhere she wants to, just as long as she posts.
 Welcome Matt  That sounds funny
What do you call a guy with no arms and no legs laying on the front porch?
Mat
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Stay stressed. Never relax. Never sleep. Ever.
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RDubois
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Re: My wife thanks all of you
« Reply #10 on: Mar 22nd, 2006, 4:01pm » |
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Beware of EENT guys. The reason I mention that is when you mention a possible sinus infection, lots of Docs will send you to an EENT. After an MRI, they'll tell you that you have a clogged sinus and you need to have them cleaned out. I doubt that there is any connection to CHs but most EENT guys don't know much about CHs. I've had my sinuses cleaned out twice. Neither operation did anyting for my CHs.Since then, I've lost 95% of my sense of smell. Whether it is the result of the operations, age, a fall, or strong disinfectant, I'll never know. What I do know, is that the two operations did ZERO for my headaches.
And on Thanksgiving morning I miss out on a great odor.
Wonder if anyone else in this group went thru a similar experience as I did, and if so, did anyone have any success?
RED
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Mattrf
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Thank god for my wife and kids who keep me alive.
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Re: My wife thanks all of you
« Reply #11 on: Mar 22nd, 2006, 5:27pm » |
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Sorry to hear that you had such a bad experience with the EENT doctor, the one I saw told me she would love to operate to fix me but there was nothing to fix, guess I got lucky. I have had two sinus surgeries but they came out fine and where needed and it was also a long time ago both time it helped. Sorry about the lack of sense of smell as soon as you said thanksgiving I could imagine the smell and yes that would really suck to not be able to smell it. Is there nothing they can do to bring back your sense of smell?
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RichardN
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Re: My wife thanks all of you
« Reply #12 on: Mar 24th, 2006, 2:52pm » |
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Welcome to Clusterville
You have a lot of reading to do and many questions to ask . . . the neat thing about this place is. . . you WILL get some answers. We are all different and respond differently to various meds, but at least here you will be able to communicate with folks that can give you their experiences with any of the above.
DO GET A SCRIPT FOR OXYGEN! I can't take triptans . . . so oxygen is my only abortive. Works for 60-70% of us . . . I can kill the beast in minutes if used early-on in the attack.
Water/water/water
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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