Author |
Topic: really need encouragement (Read 437 times) |
|
fireball
New Board Newbie
Gender: 
Posts: 35
|
 |
really need encouragement
« on: Nov 9th, 2005, 11:34am » |
 Quote  Modify
|
I've been a member on the site for a while now, and spend most of my time here reading. Right now I feel as though things can not get worse (but, each time I think that it can't get worse, it does)
My husband was diagnoses about 8 years ago. He was episodic for the first few years, then became chronic -- after our sympathetic family doctor decided to just treat the pain since no other meds were working, and gave him narcotics, which research shows can turn episodic sufferers chronic.
Each year the cycles last longer and longer, and this one, unbelievably so, started LAST November. Yes, it has been one year with NO relief.
NOTHING helps. He is completely non-responsive to every medication he has ever tried, with the exception of high dose steroids, but they no longer work either. O2 has never helped.
2 years ago he was hospitalized for 5 days of DHE and Decodron, and it broke the cylce, but it returned within a few hours of being discharged.
We have tried alternative treatments with no results.
He was most recently referred for the gamma knife, and is a candidate, but doesn't want to do it.
At this point he is beyond depressed. He can't work, can't play with our children, and feels his life is not worth living. Who can blame him?
I am doing everything humanly possible but it just isn't enough.
I know there are no answers, and that is what is most difficult. Being totally helpless and have no control is the worst feeling ever.
I could go on and on, but I won't.
Thanks for listening.
|
|
 IP Logged |
|
|
|
Margi
CH.com Moderator
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: really need encouragement
« Reply #1 on: Nov 9th, 2005, 12:05pm » |
Quote Modify
|
Fireball, c'mere. Here's a hug for you. >>>>Fireball<<<<
I'm so sorry to read your story, I'm sure many of us have been able to write the same plot line over the years of being with our clusterheads. It totally sucks when they reach the point of doom like this.
I don't have any magic words for you to make your pain go away, I really wish I did. All I can do is offer you a seat at our supporters' table and let you know that you are not alone. We've all felt your pain.
Now, tell me...you say oxygen hasn't worked for him? Was he delivering it correctly? Through a non-rebreather mask AND at a high flow rate? Quite often we hear people say O2 doesn't work and it's because they're not using it correctly.
And...alternative treatments? What has he tried and was it under guidance of "those who have gone before him". Sometimes trying alternatives can get messed up by not detoxing first, for example. What type of alternative? Shrooms? Kudzu? HBW/RC/LSA seeds?
I'm in continual research mode here, hoping to someday find the magic bullet to end my husband's pain and the stuff I'm reading about the seeds is really encouraging...
And finally - can you get your hubby involved here? Sometimes that's the only therapy that makes this bearable, is talking to others who are clusterheads. We, as supporters, can only go so far with our understanding and respect of this beast. Other sufferers have walked in his shoes and it may do him the world of good to realize there are others like him.
All the best to you, Fireball, please keep talking. It's also the best therapy for a supporter. If you'd rather talk off the board (quite often we don't feel comfy posting in public), please feel free to email me directly at moxie_miss@hotmail.com.
Hang in there, friend.
edited to add: try to stay away from the gamma surgery if at all possible. Not only does it leave facial paralysis but more often than not, the pain comes back on the OTHER side (the one not operated on).
|
| « Last Edit: Nov 9th, 2005, 12:07pm by Margi » |
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
Dave_Emond
New Board Newbie
I love YaBB 1G - SP1!
Gender: 
Posts: 9
|
|
Re: really need encouragement
« Reply #2 on: Nov 9th, 2005, 1:47pm » |
Quote Modify
|
I'm pretty sure you have my phone number, if not, IM me and I'll send it to you. And feel free to use it anytime ... anytime!
You two are like family to me and I know firsthand the feelings going on ... I've been fighting that brink for some time now.
Possibly some of the new directions I'm trying might also work for you two?
I'll be expecting a call soon! 
Dave
|
|
IP Logged |
Obstacles are those frightful things we see when we take our minds off our goals.
|
|
|
Stix
New Board Newbie
pain free days to you all
 
Gender:
Posts: 8
|
|
Re: really need encouragement
« Reply #3 on: Dec 5th, 2005, 3:47pm » |
Quote Modify
|
Hey Fireball
Im sorry to hear about your Husband, and i hope that everything will just get better for you.
you must always remember that you have alot of people who care and want to help you through this, we are here for You too as well as your Husband.
i read your article and i flet like, i wish i was there to give you a big hug to let you know how special you are to have found us here.
my mom is a CH suffer so i can at leaset relate a little to your article.
hugs Stix
|
|
IP Logged |
It is when things go wrong that you must never quit.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss