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        New Message Board Archives >> Jul-Sep 2003 >> RE: Update... Dave is going to keep fighting
        
(Message started by: Dave_Emond on Sep 2^nd, 2003, 4:03pm)

Title: RE: Update... Dave is going to keep fighting
Post by Dave_Emond on Sep 2^nd, 2003, 4:03pm

Wow!
So many responses, here and by E-mail: Good advice, sincere concerns and straight forward honesty in telling me fight on.
Wish I could respond to each note personally as I appreciate everyone's opinions and concerns.
Here's where I'm at now: We went to our small town doctors office this morning, but my doctor is out of town. It had again been a worse night than each previous night. The attacks and other pains started around 11 PM and lasted until about 9 AM this morning.
Besides the obvious will to go on due to the hurt it would cause my family, I think my ordeal with the ER doc also has strenghtened my resolve to keep fighting.
This bastard of a "doctor" who I can only guess was upset that either we woke him up or he had no clue as to what he was doing, must have decided to take his frustration out on me while I was helpless. I must have looked foolish as my defensive nature took over and I tried to take a swing at him while he was yanking me all over the bed ... my arm caught up in some side railings on the bed or I would have got at least one good shot back at him. Although the urge is there to take my tool belt in and give him a man-made Cluster attack, I'm going to have to wait on how to recourse this until I get my head and body back to at least the "normal" chronic state I was in before all this happened.
Anyway, a Nurse Practioner took me in this morning, we did skip over the mention of CH for quite a while, although I kept having attacks as she worked on me. She was extremely professional and thorough. Once the CH was revealed, she kept that aside from treating me for these other symptons.
First it was established I do not have any heart or respitory problems. She tried a shot for pain of ... uh ... Toderdal? ... or something sounding like that, I wasn't still all there. It didn't work, but was worth a try.
She went over my medical history as best as we could lay it out. She consulted often with another doctor in their busy offices. Looks like they are going to order another MRI and some blood tests, just want to get with my doctor first and the 3 of them go over everything to see how much testing I need. In the meantime, not to treat the CH, but this possible neurological problem that may or may not be related to CH, they have given me high dosages of Celebrex, Skelaxin (first meds ever given me in small amounts before we knew I had CH) and here's a mouthful ... Methylprednisolone. Basically I think they're all just anti-inflamitory or pain killers, nothing that should cuase any side effects like the experimental meds that gave me so much trouble before.
Looks like I have no choice but to just wait this out and hope something can be done. Every night the pain gets worse and keeps spreading. I dread each new night and what it will bring.
But, I have promised Annette I will fight for her, and with your tremendous support I will promise you too.
It's really all my own fault anyway, I had to go and say a while back there was nothing now that could ever get me down as I had been dealing with Chronic CH for so long now ... hint ... watch what you say, it can come back and bite ya in the A$$!
Although I'll whine secretly at night, I'm going to try my best to find my best form of fighting and that's in getting back my sense of humor and pissing off the Beast as much as I can.
Many, many, many thanks for your vibes, prayers and overall support to help me remember what I have to do for myself, my family and of course my fellow Clusterheads. We'll all fight together!
Dave

Title: Re: Update... Dave is going to keep fighting
Post by jonny on Sep 2^nd, 2003, 4:12pm

I got your back, Bro....FIGHT ON DAMN IT!!!!

..............................jonny

Title: Re: Update... Dave is going to keep fighting
Post by ShariRae on Sep 2^nd, 2003, 4:26pm

Keep on fighting..we are here to fight right along side ya :)
Huggs
Shari

Title: Re: Update... Dave is going to keep fighting
Post by BarbaraD on Sep 2^nd, 2003, 4:30pm

Dave,
Been there too many nites to count. I got relief with topamax. Hope the docs find something for you that works as well as my miracle does for me.

You know we're here for ya.. Hugs BD

Title: Re: Update... Dave is going to keep fighting
Post by 9erfan on Sep 2^nd, 2003, 4:46pm

You GO DAVE! Keep fighting! Your family needs you!

I feel for all of you who live in small towns and don't have a "choice" of Dr's to go to. But I would've liked to have been a fly on the wall when you tried to kick that Doc's ass!

:)

Title: Re: Update... Dave is going to keep fighting
Post by BonnieW on Sep 2^nd, 2003, 5:53pm

Dave - hang in there and keep fighting! We are thinking about you lots and praying for you. Thanks for the update and please keep in touch!
Bonnie and Warren

Title: Re: Update... Dave is going to keep fighting
Post by Peppermint on Sep 2^nd, 2003, 7:31pm

Dave -
I am glad to read that you are raging against the beast....and fighting for you and your family. Your post truly touched my heart for what you are going through. It left me speechless.

Never blame yourself though, you didn't ask for clusters! I don't know the pain you are going through with them, but know that you have one more person out here willing you to continue the fight against this dreaded thing.

FIGHT ON!!

Peppermint

Title: Re: Update... Dave is going to keep fighting
Post by Dave_Emond on Sep 3^rd, 2003, 1:04am

It's late and I know I haven't much time before it all starts again. Already I can feel my neck tightening up, that nerve being stretched from the base of my skull to the top, not long and it will snap. I'm nervous, and I'm having trouble finding keys to write, but I've got to do something, anything to try to stay focused.
So, I'm just going to ramble for a bit. I've tried to write through attacks before, having to rewrite simple words over and over again, but I'll stop before I go to far. I've throw out all my attempts at writings during full board attacks as they are a scary thing to see the next day.
A few things give me some hope right now, Annette has pulled out tye couch bed next to the chair i try to sleep in. You guys are out there even if i can't talk to you i know i'm not alone, plus the strangest thing hapenned this evening as the CPN gal from the office this morning called back this evebing and said she had been thinking about me and my case all day and if i have another night like the last to not wait for my next appointment but to come infirst thing in the morningor the next if things even get better/ i never had anyone in the medical field do this before she is a doctor in my book.
I need to put some dots here to let you know I'm past where I should be writing anymore..................................................................................... If I can finish this note as if I really do have a mind, I will be statisfied. I can do these last lines, but will not be able to go back and try to fix the rest. One arm is gone and this hand shaking taking forever to write what was supposed to be a quick note to applaud this DOCTOR!
Can go any further now ... I know you're there. Tonight there's going to be a showdown and tomorrow I be here to make more sense.
Thanks for listening, got to stop.
Dave

Title: Re: Update... Dave is going to keep fighting
Post by Mastifflvr28 on Sep 3^rd, 2003, 1:19am

We are here with you Dave!!!

Go to the docs first thing in the morning!
Take her up on her suggestion,

Will be thinking of you tonite....sigh :(
Mast

Title: Re: Update... Dave is going to keep fighting
Post by ClusterChuck on Sep 3^rd, 2003, 3:09am

Dave you touch my heart with your last note. You can babble on all you want here. we will try to figure it out. It is good to get it out. Keep us posted as to how you are doing.

Don't let that CPN go! Sounds like a keeper to me!

Our prayers and vibes are going out to you.
Chuck

Title: Re: Update... Dave is going to keep fighting
Post by suzy617 on Sep 3^rd, 2003, 5:00am

Hang in there Dave. My thoughts are with you and I hope you find the pf time you deserve, and fast.

Suzy

Title: Re: Update... Dave is going to keep fighting
Post by Hound_Dogg on Sep 3^rd, 2003, 6:26am

Dave...It sounds like you may have a neck injury of some sort...along with the CH. Possibly a nerve impingement along the C-6, C-7 nerve root.

I have the same symptoms from a neck injury in a car accident. Severe left arm pain, tense neck. The pain from spinal problems is usually "referred". Meaning it travels along to different parts of the body, depending on the nerve pathway. That's why people with low-back pain complain, more often then not, of severe leg pain. With neck injuries the pathway is either to the arm, hands or chest, depending on where the problem is.

Also, the stress you are going through is not making the matter any better.

You had mentioned you're going through with an MRI...hopefully this will include the neck region.

It's worth a look. Good luck

Jim

Title: Re: Update... Dave is going to keep fighting
Post by Miss_Deleny on Sep 3^rd, 2003, 7:27am

My heart goes out to you Dave :'( .. you have proven time and time again that you are stronger than the beast .. keep up the fight and make the beast know that YOU are the boss, not him!

Go see that CPN first thing in the morning .. she seems to be very concerned and wanting to help you! There are extremely few that will go out of their way to check on you after you have paid your bill and left their office. This one seems to be a keeper, as Chuck says. :)

Wishing pain relief for you and much needed rest for you and Annette.

~April~

Title: Re: Update... Dave is going to keep fighting
Post by ave on Sep 3^rd, 2003, 7:48am

Dave or Annette, check out this site, about tingling and loss of feeling in the arm, paralysis and pain.

http://www.gbs.org.uk/index.html

May be completely off, (and this is no lay try at a diagnosis) but it might give you some background if it is. It would tie in with the anto-inflammatory meds they gave.

It has also some info on possible treatments.

good luck again

Title: Re: Update... Dave is going to keep fighting
Post by taraann on Sep 3^rd, 2003, 9:18am

You have touched my heart also dave. You keep fighting and we all will keep fighting with you. AND definately take the CPN up on her offer, go see her again and again, she sure sounds like she truly wants to help so let her try!

Title: Re: Update... Dave is going to keep fighting
Post by cootie on Sep 3^rd, 2003, 11:09am

Gosh Dave.....hope yer doin ok rite now.......nice ta meet ya....hang in ther bud !! Yeah the neck pain deal could be an old injury too maybe. I know all bout that one ! Pam that's computer is total JUNK

Title: Re: Update... Dave is going to keep fighting
Post by maggie_may on Sep 3^rd, 2003, 11:36am

Hi Dave,

You've got tons of strength there! Your story is so touching and it looks like you've got a real special person with that CPN :D

Keep fighting - we're here for you! Sending prayers and pf vibes to you,

maggie

Title: Re: Update... Dave is going to keep fighting
Post by ozzman on Sep 3^rd, 2003, 12:36pm

Dave,
It hurts deeply to see a fellow CHr hurt so bad, but it is even worse to hear how badly you were treated at the ER. That CPN restores hope in the medical community, something that we at times lose sight of. There are countless caring medical proffesionals and that for every lazy, carelesss, incompetent bastard, there are many more that we can count on.

As part of the PA-NJ OUCH mission, we want and will do anything in our power to better the treatment of CHrs at ERs. We might do it one at the time, but we will be treated as human beings.

I hope all goes well, and the medical team that seems to have assembled to treat your case can come up with some sort of diagnostic and treatment. I will keep you in my prayers and thoughts.

Ozzy

Title: Re: Update... Dave is going to keep fighting
Post by Dave_Emond on Sep 3^rd, 2003, 12:56pm

Oh Boy!
Can't believe I posted that last message! Kind of remember coming in here last night just to read over the support messages, but must have had the urge to write. I sometimes try this in Word where I can delete my ramblings before anyone can see them. I'll admit I get scared of what each new night will bring, but try to put that aside. Thanks for not making me feel foolish, I obviously tried to finish off the message like I still had a brain, but not thinking to just close out the screen, deleting the message would have made more sense.
Yes, if you could could see it in there, I'm amazed by this CPN! I've never had anyone call back on their own (hard enough to get return calls at all from the doctors I've dealt with personally), so this was huge.
What she said was: If you still feel the same in the morning, come in right away. If you feel better, go ahead and come in the next day, but either way, don't wait until the appointment on the 8th.
There were significant differences last night. The full onslaught of CH attacks didn't hit as early as the previous couple weeks. Not long after I posted I wouldn't have been able to find the computer let alone write. I'm used to this barrage of attacks every night, as much as I hate them, I've had to learn to live with them.
I always awake to Clusters, neck and back pain and after a scalding hot shower can force myself to go to work. I usually have about 10 attacks during the day, but can cope.
These new pains have made it much harder to cope (like that hasn't been made obvious) :)
So, how did these high dosage meds every 4 hours work last night? Much better than expected. Enough to decide to keep taking them and see the CPN tomorrow morning. But, I know I still need MRI work and possibly other testing. These meds have only masked most of the new pain (no change with Clusters). I can still tell my fingertips are numb, the nerves are still shooting and it has spread again further. So I'll have to remember this throughout the day and not do anything to cause any more damage due to this "mask" of whatever med is covering the severe pain that was tying me into knots.
I agree with the many who suggest that I most likely have some sort of neck or back problem, either intensifying or caused by the CH. The tension of the day to day dealings with CH, the extremely physical nature of my work and of course the stress all most likely have their share in this. Guess the best route will be to get all the testing I need and try to work from there and then see how to deal with the other stuff.
Going to beat this, at least in my mind. I realize the CH may never go away, but can at least not let it take me down.
Again, I can't expess how much all your support means to me, but I thank all you you very much!
Dave
Annette says "Thank you all" as well :)

Title: Re: Update... Dave is going to keep fighting
Post by STABBINGPAIN on Sep 3^rd, 2003, 1:10pm

Dave and Annette....
Being strong as a family strenghtens the inner soul .Im glad your ok. Had us worried. . We're right there with you and your family . If you ever need anything...
Karen