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Topic: New Sufferer - Wendy (Read 462 times) |
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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: New Sufferer - Wendy
« Reply #1 on: Jun 21st, 2006, 11:24am » |
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Wendy I am so sorry you need to be here and are going through a rough time.
Have you tried the o2 treatment yet?
It also sounds like it may be time to find a new neurologist, print out as much as you can here about treatment and take it to a new doctor and get some relief, don’t see a doctor that does not take your condition or treatment seriously enough, you should not have to suffer more because a doctor does not want to treat you or give you what you need to get through this.
Like Margi said you should post here you will get a lot more support over there and you will find you are far from alone in this and can vent as much as you need to and you find that everyone understands exactly what you are talking about and will be nothing but sympathetic to your condition and circumstance.
I hope you feel better soon and your girls start to understand that you are not to blame and that you need there support.
Matt
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| « Last Edit: Jun 21st, 2006, 11:25am by Mattrf » |
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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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Linda_Howell
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Hearing is one thing. Listening is another.
 
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Re: New Sufferer - Wendy
« Reply #2 on: Jun 21st, 2006, 11:33am » |
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Wendy,
I sympathize with you for all you're going through right now. It's going to take a lot of courage to get through the days ahead but I have a feeling you will be up to it. You just need an arsenal right now.
You don't mention oxygen. Here is a link you can print out and take to your Dr. http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
02 is effective for more than 70% of us and it's safe, cheap and it works.
There aren't many here who HAVEN'T gone through a divorce, so we can empathize there also...vent away.
calientev8@sbcglobal.net if you just want to talk.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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alchemy
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get out of my head
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Re: New Sufferer - Wendy
« Reply #3 on: Jun 21st, 2006, 1:12pm » |
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Hang in there Wendy, you are not alone. You have the ch family with you. 
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tanner
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Re: New Sufferer - Wendy
« Reply #4 on: Jun 21st, 2006, 2:06pm » |
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I am so sorry that you have needed to come here, but you are at the right place!
How far are you from Grand Rapids (Joel Sapers team)
If you know that verap works for you you need to find a Doc that is going to let you build up fairly quickly.
I am assuming that you are already getting PM's with helpful suggestions so I will simply say hang tough and check your messages..........................Tim
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: New Sufferer - Wendy
« Reply #5 on: Jun 21st, 2006, 4:31pm » |
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Warm welcome, Wendy! 
Best wishes,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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maffumatt
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We are here for you Wendy.
Anyone else noyice that you can not reply to the post on the supporters board?
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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: New Sufferer - Wendy
« Reply #7 on: Jun 21st, 2006, 5:14pm » |
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I tried as well and could not, whats up with that?
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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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Jonny
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Re: New Sufferer - Wendy
« Reply #8 on: Jun 21st, 2006, 5:16pm » |
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Margi locked the thread so all replies would be posted here.
Nice move, Margi 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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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: New Sufferer - Wendy
« Reply #9 on: Jun 21st, 2006, 5:19pm » |
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But where is Wendy?
I hope she is reading this and getting the support we are trying to give.
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| « Last Edit: Jun 21st, 2006, 5:20pm by Mattrf » |
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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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Jonny
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Re: New Sufferer - Wendy
« Reply #10 on: Jun 21st, 2006, 5:22pm » |
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on Jun 21st, 2006, 5:19pm, Mattrf wrote:
My guess is that she is dealing with life and will be back when she has time.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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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: New Sufferer - Wendy
« Reply #11 on: Jun 21st, 2006, 5:31pm » |
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When she comes back, I sure hope all this makes her feel better.
Lots of good vibes going her way.
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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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Carl_D
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Re: New Sufferer - Wendy
« Reply #12 on: Jun 21st, 2006, 5:50pm » |
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Wendy - I know it is a bit of a distance from where you are at in Michigan, but there is a place in Ann Arbor called MHNI - Michigan Head-Pain and Neurological Institute. These people are pros at dealing with CH and Dr Weintraub helped me immensely when I lived in Michigan just over 10 years ago.
Here is some contact info for you:
Telephone:
(734) 677-6000
Fax:
(734) 677-2422
Address:
Michigan Head-Pain & Neurological Institute
3120 Professional Drive
Ann Arbor, Michigan 48104-5131
Hang in there Wendy and don't let the beast conquer you. I know it is easier said than done, but you are not alone. There are many ears here to listen and many shoulders to lean on.
Peace,
Carl D
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Sandy_C
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Re: New Sufferer - Wendy
« Reply #13 on: Jun 21st, 2006, 6:03pm » |
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Wendy
You said "I don't think I will have the strength or coping ability".
Well, you do now. That is what this family does. Gives each other the strength needed to make it through and to live a life. Please keep in touch with us.
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
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Charlie
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Re: New Sufferer - Wendy
« Reply #14 on: Jun 21st, 2006, 6:39pm » |
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Hi Wendy.
Glad to meet you but sorry for the reason. In any case you came to the right spot for ideas about dealing with this horror. You'll find some good stuff here. This is one of mine that helped:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Wendy1
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Re: New Sufferer - Wendy
« Reply #15 on: Jun 21st, 2006, 7:06pm » |
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WOW... I knew I could count on you guys. Actually I've been coming here for quite a few yrs. I feel guilty cause the only time I show up is when I'm in a cycle.
I can barely deal with a cycle anymore when things are good, I pray to God this is not the start. I am not leaving here. I know so many of you go through these things, but I am so much on overload right now that I scare myself.
I have a wonderful relationship with my daughters and my oldest is so pissed at me cause her dad's not here. It's getting bad, however I am in a verbally abusive, angry marriage that it's not even an option anymore unless things change. I truly know that it is in God's hands because if he choses to make changes then it will work out, if not, it doesn't and I've come to accept that. I just am so afraid of chasing my girls away.
I know I don't have a custody thing to deal with, but wow, any advice on how to still enforce rules/parenting rites without 'chasing' them to their dad would be greatly appreciated. Love you all so much. And thank you! Wendy
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Jonny
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Re: New Sufferer - Wendy
« Reply #16 on: Jun 21st, 2006, 7:49pm » |
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Wendy,
Hang in there, EDouble will be by.....this is the kind of thing he does for a living and im sure he will have some advice.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Wendy1
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Re: New Sufferer - Wendy
« Reply #17 on: Jun 21st, 2006, 9:24pm » |
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Who is EDouble? Thanks again everyone
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Wendy1
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Re: New Sufferer - Wendy
« Reply #18 on: Jun 22nd, 2006, 12:21am » |
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Ok, just tryin to keep myself up on top, I can use all the help I can get. I tend to forget what a great, great bunch of ppl you all are here.
I've always come back to the board during a cycle. It's just about the only thing that gets me through.
If the beast was ever going to rear its head for a cycle, this would be a prime time...
Any new treatments, etc since about 1/2005?
I usually do 360mg twice daily of Verapamil, and O2 rebreather, however NONE of that works for the first few head bangers/first few weeks. I've tried just about everything imaginable and have been to the Diamond Clinic in Chi Town with no luck.
What is the newest med for the actual h/a? I usually down a vicodin, (when they are SO gracious to give me a few), and then I don't even know what it is I've tried last, Relpax maybe? Of course none of the shit works fast enough for me and I end up going to er.
Oh yes and I busted my girls ganging up talking trash about me tonite, that hurt bad, seeing i live, breath, sleep and everything else for them. But of course I'm the bad guy here.
Wow, am I venting or what! lol. Thank God I only have a few more yrs b4 college!! love u guys
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Wendy1
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Re: New Sufferer - Wendy
« Reply #20 on: Jun 22nd, 2006, 8:02am » |
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Ahh yes, Kudzu, I do remember that from stopping by a few months ago. I told my gp about that and he laughed.
Anybody have suggestions as to where I can find this?
Thanks for all the vibes. SO FAR, nothing. Maybe the Lord knows that it would just be too much for me right now to start a cycle. :
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E-Double
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Re: New Sufferer - Wendy
« Reply #21 on: Jun 22nd, 2006, 8:02am » |
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Hi Wendy,
Drop me a PM and we can talk.
I will drop my fee and Jonny will get a kickback when we meet a again. Brew alright? 
Eric
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| « Last Edit: Jun 22nd, 2006, 8:02am by E-Double » |
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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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Wendy1
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Re: New Sufferer - Wendy
« Reply #22 on: Jun 22nd, 2006, 5:38pm » |
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Wanted u to all know that I'm still keeping the beast @ bay. I'm still alive and struggling with my girls attitudes about all this.
Why or why don't teenage girls come with manuals!
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Ree
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Re: New Sufferer - Wendy
« Reply #23 on: Jun 22nd, 2006, 7:15pm » |
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wish I knew that answer about the teenage girl thing..... my friend told me that they are supposed to hate us it means we're doin something right. Ya can't be friends with your kids til they get married and have their own......
anyway..... welcome back to the family... lot's of support for you here......go easy on the narc drugs (vicodan) they can rebound on ya.... love ree
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Wendy1
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Re: New Sufferer - Wendy
« Reply #24 on: Jun 24th, 2006, 8:55am » |
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Just Checkin in... cause u were all so kind when I originally posted this. As u all know there are ups and downs.
Hopefully I'm gettin a handle back on my children(!), husband is still gone, don't know where that is going. And SO FAR I've staved off any cycle.
I'm so confused about e/thing, but on the bright side I have an awesome job interview on Monday! Keep those vibes coming. I've never known such an awesome group of ppl. LOVE YOU ALL! Wendy
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