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Dazed and confused
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I'm new to this
« on: Dec 27th, 2006, 2:44pm » |
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Hello everyone, this is all very new to me. I'm a 40 year old Irish guy living in Sweden. I was diagnosed with Clusters in '96 after years of getting shot up with morphine at the ER and being told it was all in my mind. In the end my wife was so concerned that I had a tumor that she dragged me off to see a doctor and luckily he had just read an article about CH and could not believe that he bumped into me one week later. I went from being episodic to chronic in 2002.
Anyway, I have just joined your "family" after years of trying to pretend that this is just a part of who I am. Well right now I have been on my meds. for over two years. I take Isoptin (verapamil) 80mg tablets. I'm supposed to take 4 a day but am now on 10-14. My face is like a balloon and I can just about squeeze my feet into a pair of hiking boots. The doc. tells me that we'll try to stop this two year episode soon (he's busy over Christmas). We tried cortisone but that had no effect. The Imitrex injections just destroy me and my poor wife is sick of having a husband around who can't think straight. I'm at my wits end. Whining? Yeah, I guess so, but sometimes it just gets too much. My beautiful one-year old daughter can't understand it when Dad just goes quiet and rocks back and forth and I just want it to end.
Okay, I've gone on a bit. It feels great to be able to "talk" to people who understand. Right now the only things keeping me going are my daughter, Mony Python and Denis Leary.
Seasons greetings to you all and I hope the Beast allows you to enjoy New Years Eve.
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E-Double
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Re: I'm new to this
« Reply #1 on: Dec 27th, 2006, 2:56pm » |
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Welcome and glad you found us!!!
It is not uncommon for us to have to go that high with a dosage of verapamil.
I would however be concerned with the significant edema that you seem to have.
I do not use any meds at the moment as I got sick of the side effects.
Imitrex was a bitch as well though it works.
Look into Oxygen!!!!!!
A G-dsend
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Brew
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Re: I'm new to this
« Reply #2 on: Dec 27th, 2006, 3:06pm » |
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It's not "your" family.
It's "our" family.
Sorry you're here, but glad you found us.
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Always remember that you're unique, just like everyone else.
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Dazed and confused
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Re: I'm new to this
« Reply #4 on: Dec 27th, 2006, 3:32pm » |
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Thanks for the replies. I will indeed read as much as I can here. I have asked about oxygen but been met with no interest whatsoever by my doc. I had a great team of doctors in Stockholm who were all experts in CH but since I moved down south I have a new team who just don't care and admit that they just don't know that much about CH.
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Guiseppi
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Re: I'm new to this
« Reply #5 on: Dec 27th, 2006, 3:42pm » |
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I use lithium at 1200 mg a day when on cycle, side affects ar minimal, might be worth a shot. And do push for the oxygen, no side effects, cheap, really effective for many!
Guiseppi
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Linda_Howell
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Re: I'm new to this
« Reply #6 on: Dec 27th, 2006, 5:07pm » |
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Hi and welcome to "our" family as Brewcrew already said. None of us here are Doctors but, combined, we all have thousands of years of experience with this condition and we will help you in any way we can. Don't hesitate to ask questions.
Please check out this link on pure Oxygen. It's safe, cheap and doesn't have side-effects like those from the meds we take and it works to abort a headache in about 70 % of us. Most of the time with-in 10 mins.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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RichardN
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Re: I'm new to this
« Reply #7 on: Dec 28th, 2006, 2:35am » |
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Hi and Welcome to Clusterville
Another vote for 02! I have some artery blockage, so cannot take Imitrex . . . so 02 is my only abortive . . . can kill the beast in minutes if used early-on in the attack. Just nailed him a few minutes ago in under seven minutes using a Clustermasx.
Please try the "water X 3" therapy (link on left) . I'm absolutely positive this therapy has helped me reduce the frequency/intensity of the attacks.
Copy the "cluster traits", and "oxygen info" (links to the left), plus the other links that will be along (if I was better at cutting and posting I would give them to you now  . Much of it is "recognized" medical research material indicating that 02 IS a viable abortive for CH.
Identify your triggers . . . alchohol is a major trigger for most CHers (huge one for me), some only in cycle if episodic. I'm chronic and a beer or shot of brandy will trigger an attack within 10 min or less. I was a heavy drinker when I came here . . . quit 2/02.
Keep reading, keep asking. One of my favorite mottos on this board is, "Nothing works for everyone, but SOMETHING works for everyone" . . . here you've a very good chance of finding the "something" that works for you . . . .and the answers/info you get comes from people who truly know your pain.
Be Safe, PFDANs
Richard (Scots/Irish . . . .Wallace/Stewerts clans)
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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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Dazed and confused
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Re: I'm new to this
« Reply #8 on: Dec 28th, 2006, 3:06am » |
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Thanks you guys for your replies. I will definitely pin down the doc. to discuss O2. It is a major process in Sweden as I'll hqave to have the house OK'd by the fire dept. etc. but i want to try it. Thank you for thye link Linda; very helpful. Thanks to Richard for the info. You're up late. Did the Beast wake you? I have identified my triggers. Alcohol is the main one as is tobacco. Thankfully I am not much of a smoker, but I do enjoy the odd cigar. I'm up with my daughter now having given her breakfast. A CH free night thankfully. My wife is very negative (even angry) about this forum and reckons that I'm wallowing in self pity and concentrating on the "negative". I am just so happy to have found such a welcoming "home" of fellow sufferers and I believe it will be of great help, support and education to me.
I have taken part in a number of research projects here involving blood tests and all sorts of tubes in the stomach as they try to find a cause for CH's. The last one involved a lumber-puncture and I'm afraid I bottled out. Since moving to the south of Sweden I guess there will be no more projects as Stockholm is where it all happens. As a researcher (in a completely different area) myself I am keen to keep up with what's happening and how the research is coming along. Anybody got any news?
Keep well
Trevor Dolan
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Sandy_C
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Re: I'm new to this
« Reply #9 on: Dec 28th, 2006, 2:02pm » |
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Hi Trevor, and welcome.
As everyone above has said, this is the place to learn about CH, what it does to you as the sufferer, and what it does to your family, friends, and co-workers. You mentioned that your wife feels that this site is somewhere we all get together and dwell on the negative, and wallow in sel-pity.
Yes, we do wallow now and then when things are going badly for us, but the others on this forum, while they do sympathize with us, will not allow us to wallow long. They tell us to fight back, check out a different medication, a different method, a different trick that helps each of us in one way or another to make it through.
This board is not a pity party. It is a place where CH sufferers, and their supporters can come for information, knowledge, support, and, above all, shared information on what worked for some of us, and what didn't work. Please encourage your wife to log on and read. She doesn't need to join herself, allow her to log on under your name. I gave my husband, who early on felt pretty much as your wife does, carte blanche to log in under my name on these boards any time he wants - full freedom to read what I post and what others post (even my private PM's - nothing here is kept secret from him). He has done this, many times. And he has learned about CH, and has learned just what a family I found here. Your wife can learn this too. Just tell her there are no secrets, no hidden agendas, no pity party - just knowledge. There is even a special board dedicated to our supporters.
Above all, talk with her openly and honestly about what you have learned here. We need our supporters, who primarily are our family members and close friends, but who are also the CH sufferers on this forum. Without all of them, we wouldn't stand a chance.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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Dazed and confused
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Re: I'm new to this
« Reply #10 on: Dec 28th, 2006, 2:22pm » |
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Thanks Sandy, I'm working on it. I have already suggested that she takes a look at the website but I guess she's just not ready yet. I do let her know what I learn here though and I feel that some day she'll hopefully have a look for herself. I don't know if it's a cultural thing, and as a sociologist I should know better, but in Sweden some people seem to equate illness with weakness. An example of this is that it is prefered that my daughter not see me taking tablets. This is after all a country that sterilised people with Downs syndrome up until 1976. Accepting illness is difficult for many here whereas in Ireland we just see it as a part of life.
Peace
Trev
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Sandy_C
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Re: I'm new to this
« Reply #11 on: Dec 28th, 2006, 2:51pm » |
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Trev, my husband, too was reluctant to log in. I just kept talking to him about people I had met on these boards, great people who posted back to my stupid questions, who even telephoned me from across the country. I even told him about some of the slams and not-so-nice posts.
I told him about different methods (non-prescription) of attack to CH that I had read about here - water, water, water, melatonin, kudzu, etc. , and told him I wanted to try them. Some worked, some didn't.
I told him how astounded I was at the support I found here, and, eventually, so was Tarey (my husband). Above all, when I shared all of this information with him, he could see how uplifted I felt, just knowing there were people out there who were trying to help me, he also felt uplifted and was more willing to do whatever he could to help me.
Whether something worked or not, I had help! And when I had help, my own attitude became more positive, which, in turn, made his attitude more positive.
One positive + another positive = success! Maybe not pain free success, but success nonetheless in that the two of us, (my bestest supporter in the world, my husband), and I, are fighting this battle together.
And, we're winning!
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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Guiseppi
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Re: I'm new to this
« Reply #12 on: Dec 28th, 2006, 5:37pm » |
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Beautifully put Sandy, both posts. My wife found this site for me and has been a Godsend of a supporter for me. She learned so much about CH from the board, finally convinced her it wouldn't kill me and taught her how to help. Strongly encourage her to give the supporters board a look see!!
Guiseppi
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Yorky
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learn to meditate (or just sit & do nowt)
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Re: I'm new to this
« Reply #13 on: Dec 29th, 2006, 1:45pm » |
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Right now the only things keeping me going are my daughter, Mony Python and Denis Leary.
always look on the bright side of life.(monty python, for those that dont know)
glad you have found us.
i hope things improve for you buddy.
just give that little girl of yours a big cuddle when not in pain. i tend to lock myself away on my own when gettin hit. try not to beat yourself up buddy (i find geting moody, or why me,type of thinking..just set's the ball rolling again)
(i wish i could take some of your hits for you)
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today is a gift.....thats why it is called the
present.
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Dazed and confused
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Re: I'm new to this
« Reply #14 on: Dec 29th, 2006, 2:22pm » |
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Thanks a lot Yorky. Right now I'm battling that selfr-pity monster. I've always seen myself as someone who just gets on with life, but this cycle has been going on for two years now and I just want to get off the meds. I give myself a good kick in the backside from time to time and remind myself how lucky I am to have such a beautiful family.
Just had a bad day at the A&E (ER). Heart problems from too much Verap. My own doctor is on holiday and his clinic basically said "tough s...! Go to your local ER; we can't help you". Ah the caring NHS of Sweden. It warms my heart.
Dr. Einstein told me I needed to cut down a little, like I hadn't figured that one out already. The poor guy did his best and rang to the nearest neuro clinic, but the doctor on call said he didn't know me and would not make any recommendations re. meds. It felt good to get the heart checked though.
Anyway, thanks again. That goes for the rest of you too for the various replies. It really has given me the boost I needed to get back on track. Feels like home already!
Peace
Trevor
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