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Dave_Emond
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Someone saved my life last night
« on: Sep 30th, 2003, 4:41pm » |
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Hi Friends,
Close call last night. As many of you know, for a month now I've been in trouble with some new type of strange disorder we haven't been able to trace. Day by day, it's been getting worse, I cannot walk on my own anymore.
I posted about an ER situation after going into tremors and then paralizing of the left side of my body. These symptoms have spread throughtout my entire body now.
Close to this time yesterday, I started to feel a lot of pain everywhere and within an hour I was shaking and turning colors. I asked Annette to keep an eye on me as I was starting to get confused. Sometime later I was at the local clinic, and fortunately my doctor was there. After many attempts to help, they called an ambulance to take me 30 miles to the ER. Along the way, I lost control of the shaking and pain, and being strapped down on my back, got hit with a major CH attack. I fought for as long as I could, but guess I finally collapsed. They had a "intercept" by the fire deparment, where they put a paramedic on board as I was considered "Contonic" (spl?). Whatever that means. Guess I wasn't responding to anything or breathing, didn't care, I was done. But, this Paramedic big brusier of a gal, would have nothing to do with it. She'd smack me around and kept trying to force a rhino horn threw my nose over and over. But, she did get me back to a fighting mode, and it made me fight again to live.
All the ER doctors were great this time, they had Flight for Life ready to go if they couldn't stabilize me. After several hours they were able to.
Seeing a new specialist again tomorrow, supposed to be top notch. Looks like West Nile Virus is no longer the suspect. Looking at possibly MS, or some other more rare disorder.
I'm wondering, this bothers me the most: I've never felt pain or anything during major CH attacks, yet with this, my entire body feels pain even during the attacks.
I've scalded my face, frozen an eyeball, beat boards over my head, etc., never felt a thing in the past. Only the CH! What gives? Anyone else ever had pain bad enough to divert some CH pain during a major attack? I don't ever remember anyone saying they have, that's what scares me a bit (okay maybe a lot).
I've read up on MS, and can see some simularities, but nothing concrete. They say you can't compare one sufferer of MS with another because everyone is different. But if you, or someone you know has MS, I'd still like to talk to them via E-mail.
Anyway, I'm at a loss and just looking for some clue as to what is going on. For the first time last night, besides the earlier suicidal tendancies, I found out whatever this is could kill me.
Who saved my life? Annette. She took charge as not only my wife, but as a supporter. When I think of that, I think of all the supporters out there and want to thank you all for what you endure for us. My doctor, the whip butt paramedic gal, the ER doctors all did their jobs well. And then of course, the many, many of you who have been contacting me, and saying prayers, sending vibes and been so supportive. Thanks to all of you.
I don't know what lies ahead, but I know you're out there and I do feel you with me when it seems like it's the end.
Kinda just letting things out right now, trying to keep my mind focused on something by talking to those I trust. Really interested to know if anyone else feels other pains during major CH attacks? I thought it impossible.
Thanks for listening, I'll shut up now,
PFDAN's
Dave
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Prense
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Re: Someone saved my life last night
« Reply #1 on: Sep 30th, 2003, 5:29pm » |
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on Sep 30th, 2003, 4:41pm, Dave_Emond wrote:| I've read up on MS, and can see some simularities, but nothing concrete. They say you can't compare one sufferer of MS with another because everyone is different. But if you, or someone you know has MS, I'd still like to talk to them via E-mail. |
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Yes, I know someone and I will give him your email address. The first neuro I saw, mentioned MS to me although he never tested me for it. I also know of two other people who eventually was diagnosed with MS, but only after one was diagnosed with CH and the other was diagnosed with a form of migraine. It was later determined that both of them only had MS. I am not sure how to get in contact with those two, but again, I will give your email addy to a friend of mine who has been diagnosed with MS for a few years now.
Chris
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Carl_D
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Re: Someone saved my life last night
« Reply #2 on: Sep 30th, 2003, 5:43pm » |
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Dave, you are very lucky you were with your wife when this happened. Had you been alone, you may have just given up.
No matter what it is, don't give in to it. Keep fighting. Sounds like you have a very strong supporter by your side.
Peace,
Carl D
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Miss_Deleny
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Re: Someone saved my life last night
« Reply #3 on: Sep 30th, 2003, 6:29pm » |
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 Made me cry, you did!
I'm VERY glad Annette was with you! She is one hell of a supporter as well as wife to keep you from letting this thing beat you!
Yes, its hard being a supporter but we are here to make that beast know that WE are not going to let it take who we love .. when you, the sufferer, cant find the strength to fight anymore, we are there to take over! Annette proved it!
Remember Dave, no matter what you find out to be the problem, we will be right there with you to help in any way that we can!
~April~
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5-string
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Re: Someone saved my life last night
« Reply #4 on: Sep 30th, 2003, 6:42pm » |
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Dave,
I'm so sorry about your medical situation. I wish I could do something for you.
I have yet to feel any pain that is not completely shadowed by a cluster attack. I've only been experiencing these things for 4 years and they have gotten worse each year for me but so far the head commands all attention when I'm hurtin'.
I'm sorry I can't be of more help.
...Mark..
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Donna
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Re: Someone saved my life last night
« Reply #5 on: Sep 30th, 2003, 7:43pm » |
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Dave......I'm so very sorry to hear of the terrible pain and frightening symptoms you are experiencing. You are still in my prayers.
A thought that comes to mind is the possibility of exposure to a toxic substance, such as mercury. Most of your symptoms are included in long term, chronic exposure. Do you work with mercury compounds at place of employment?
I can't imagine why you have not been admitted to the hospital for extensive testing.
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OneEyeBlind
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Re: Someone saved my life last night
« Reply #6 on: Sep 30th, 2003, 7:59pm » |
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Dave, sounds like you have one hell of a wife. And with the stuff you have had to deal with ...... well, you are one hell of a guy. Whatever the outcome, whatever the disease ..... we are here for you. I have a feeling that whatever you are dealt, you'll be able to deal with it. You are that kind of family. My best vibes, prayers, and juju coming at you !!!!!!
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ShariRae
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Re: Someone saved my life last night
« Reply #7 on: Sep 30th, 2003, 7:59pm » |
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Dave,
I know there is nothing I can say or do to help get rid of all the pain & confusion..just know you are in my prayers for a speedy diagnosis & an even faster recovery...keep up the fight. Annette..you are one helluva lady..my hats off to you for keeping your cool & doing what needed to be done 
Huggs to you both
Shari
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Melissa
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Re: Someone saved my life last night
« Reply #8 on: Sep 30th, 2003, 9:05pm » |
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Dave,
My prayers are with both you and Annette. I cannot even begin to fathom the trauma you are going through! Please know, that I pray for you both daily, to give you relief and strength, and to find out what is causing this. Know I am with you in spirit!!
much love,
mel
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TxBasslady
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Re: Someone saved my life last night
« Reply #9 on: Sep 30th, 2003, 9:15pm » |
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Wish I could take some of that pain for you, sweetie.
You have really had a rough time
Annette, you are a great wife and supporter ! 
Both of you...please stay in touch....let us know if there is anything we can do.
Sending lotz of pf vibes to you, Dave. 
Jean
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Edna
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Re: Someone saved my life last night
« Reply #10 on: Sep 30th, 2003, 10:12pm » |
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Aw Dave, I'm so glad that Annette was there to take over when you needed her to.
Sending you the biggest, warmest, heart felt vibes you could ever imagine Dave.
I'm so glad too that you consider us a place to come and share, glad you did BUT PULEEZ.....you don't have to shut up...(lol)
Hope we can be here for you whenever you need. Keep us posted on all your progress.....we care!!
EDNA
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Charlie
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Re: Someone saved my life last night
« Reply #12 on: Oct 1st, 2003, 3:43am » |
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I'm here for you Dave and wish I had some profound thing about MS if that's what it is, to tell you. I do know that there are some oddball kinds that hit only rarely for short periods and then not necessarily in devasting ways...........
Damn it, You'd think that one fucken thing at a time would be enough. Pisses me off. 
Charlie
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SommelierCH
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Re: Someone saved my life last night
« Reply #13 on: Oct 1st, 2003, 4:30am » |
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Dear Brother,
Your stories of courage are an inspiration to us all. For you to use your precious energy to reach out to us and let us know what’s going on, just blows my mind. What a wonderful gift you give us. Thank you.
I continue to send you and your wife prayers/vibes.
David J.
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Dave_Emond
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Re: Someone saved my life last night
« Reply #14 on: Oct 1st, 2003, 7:15am » |
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Thank you all,
I told Annette tonight to come see the messages of support that are coming in waves in here and by E-mail. We both are so thankful and extremely overwhelmed by just how our "family" cares. It is a major factor in what keeps me fighting now. I've woken twice tonight to extreme pain from this thing (a couple more times to CH attacks, but I've been going through that nightly for years now.)
Many have sent E-mails with possibilities to check into. Many are very close, and either rule out a disorder or at least give me paths to work from, so all have been helpful.
I'm in extreme pain now as I write, my brain does not seem to be effected, so I use this time to try to concentrate my thoughts elsewhere.
Mind if I tell you just what the symptoms are and how they have spread over the last month, it may help?
August 26: Had a major CH attack that threw me out of chair onto floor. No apparent injury. A few hours later, my upper left arm had severe nerve pains shooting from my elbow to upper arm.
Following days:
Left arm pain extended throughtout whole arm.
During CH attack, arm and head pain at same time, I was pretty freaked to feel pain other than CH.
Following nights, pain spread through left shoulder to behind shoulder blade. Increased pain during higher level CH attacks. I rolled on floor begging to die.
Each night got worse, the nerve pains spread into my whole left side, again increasing during CH attacks, got suicidal wishes but to debilitated to carry out.
Went to ER during CH attack & this new pain as I could no longer help myself. Nerve pain so bad, after "tremors" of shaking and incredible nerve pain, my left side eventually curled up in a somewhat paralizing manner. Nothing was done at ER.
Suffered through this over the holiday weekend and sat outside clinic on Tuesday morning waiting for any help. CPN took me in, did exams and gave me Megtol ?
Waited for my doctor to return from China where he was adopting an orphan child ... good man.
He did more tests as this pain was still spreading across my body. Prescribed 80 mg of Prednisone.
Pain continued to spread, but not as severe for a breif time. As it got worse, we had to up the Predinsone to 120 mg. Added Amitriptiline. These helped somewhat (didn't touch CH attacks though) but I could still feel the nerve pain continuing its progression into the right side of body. Stayed on high dosage of Prednisone as long as possible, but side effects were evident. Swelling of face, stomach and motor functions becoming hard to perform. Had MRI ... nothing new from previous MRI's, brain appears normal. Many blood tests, sediment and culture. High levels of white blood cells evident, but no conclusion as it could have been defensive action against the Prednisone. Had Spinal Tap, looks like so far they've found nothing wrong in fluids drawn. Blood tests also appear to show negative to West Nile Virus.
Tapering off Prednisone (now at 90 mg per day) pain is increasing daily through entire body. My average pulse rates run about mid 60's and have always had strong heart rate. For the past few weeks, pulse averages about 96. At times shoots to well over 100.
Episodes where nerve pains engulf whole body sending me into uncontrolable tremors, which after long periods can paralize sections of body. Cannot walk without assistance anymore and have to concentrate each step. Pain is incredible on soles of feet, knees and hip while trying to walk. Using a walker, I can get about 20 feet (in about 15 minutes), much nerve pain through back and arms trying to not fall off walker. Movements like this send pulse over 100+.
This has been the progression leading up to the other nights near death experience. Annette was keeping an eye me as I was starting to feel extreme pain and somehow managed to get me to the clinic, pulse was up to 128, I was unresponsive to some sort of pain tests, could hear, but unable to respond. Put in ambulance, during trip, again whole body lost control in imense pain. Pulse rate hit 144.
Being strapped in flat on back, of course triggered CH attack. Tried to use every CH coping method I could muster, but fight was too much. Must have fatiqued body too much, body went numb and no will left to fight.
Intercept of ambulance by paramedic got me breathing again, had to be very aggressive to get my mind on the defensive and start fighting to live again. After about 5 hours in ER, I was stabalized, although pain in legs never ceased. Doctors consulted with Neurologist in Denver, but they said if it has been going on for a month, immediate transfer not urgent. Sent home.
This morning, painful, but bearable, use CH coping methods to endure pain, although these methods I use sometimes cause me to forget to breath properly. Working on that aspect for a long time now.
(message too long ... have to follow up)
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Dave_Emond
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Re: Someone saved my life last night
« Reply #15 on: Oct 1st, 2003, 7:18am » |
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(continued)
These pains are not nearly as bad as the CH attacks, but when both hit at same time, it is more than I care to bear, very hard to want to fight. As I've said before, it is inconceivable to me that I feel pain of any type during a major CH attack, no one could ever have convinced me it was possible. They do not seem to be linked though. I still have CH attacks (about 5-8 during daytime and 10-12 attacks at night.) Needless to say, sleep deprivation has been a problem for the years I've been chronic, and is now much worse. Last few days, seeing things that are not there for short periods. Not sure if I'm awake and dreaming or what is going on with that.
Will be seeing an Internal Specialist today at 1:00, hoping for some hint of what is happening. As I'm tapering off the Prednisone, pain is increasing very quickly and with it throughout entire body along with repeating CH attacks, my mind is exhausted. I feel as long as I can keep my mind focused, I can bear this.
Sitting here now writing a book almost, helps me do this. Talking to family CH'ers and supporters is my haven at this point. Every response, so genuine, gives me strength and encouragement to keep fighting. Wish I could truly put down in words how much you all have meant to me in fighting this, I would have given up if not for my wonderful wife and my family here.
Thanks for letting me just bend some ears and sorry for the long post ... just needed to talk.
Will let you know if we learn anything new, thanks for all your prayers and vibes, I do feel them and feed off them.
God Bless you all,
Dave
(Wow, guess I did write to much, sorry bout that!)
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Obstacles are those frightful things we see when we take our minds off our goals.
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Donna
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Re: Someone saved my life last night
« Reply #16 on: Oct 1st, 2003, 8:06am » |
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Dear Dave.........
You could never write "too much". If It helps just a little bit, we are glad.
Before you know it, it will be time to go to the doctor. This one just HAS to help you! I'm sure your wonderful wife will take a list of what your family here has suggested no matter how far fetched some of it may seem.
Please consider a teaching hospital if you are to be admitted. They are usually worlds above even big city hospitals.
I won't be so foolish as to say "it'll be all right" because I don't have that knowledge, but I will hope and pray that the docs will find the wisdom to diagnose you and the hand of God to treat you.
Hugs and Prayers,
Donna
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Margi
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Re: Someone saved my life last night
« Reply #17 on: Oct 1st, 2003, 9:00am » |
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Wow, Dave - you and Annette are sure being sent some trials, huh? You've got a great lady there by your side - you already know that. Please let her know that we're here for her, too, if she needs to talk.
Sailpappy mentioned to me in email that he's wondering if you've been bitten by a spider.....that you were under your deck some time ago and found a nest of them. Have they tested you for that? Wouldn't it be wonderful if all you need is some anti-venom? You've often mentioned that your pain starts in either an arm or a leg - I know this probably sounds ridiculous and elementary, but has anyone checked you for bites?
What about shingles? Shingles can be very VERY painful and paralyzing....
Just throwing out some ideas to you to help you in your journey to recovery.
Prayers and hugs,
Margi
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BonnieW
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Re: Someone saved my life last night
« Reply #18 on: Oct 1st, 2003, 1:53pm » |
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Dave and Annette - I don't even know what to say - please keep fighting and looking for answers - someone somewhere has to know what is wrong. Meanwhile, please keep us informed - and know that you both are in our thoughts and prayers.
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