Author |
Topic: Been silent - can't shake the nightmare (Read 690 times) |
|
burnt-toast
New Board Hall of Famer
Gender: 
Posts: 1686
|
 |
Been silent - can't shake the nightmare
« on: Jul 29th, 2006, 9:33am » |
 Quote  Modify
|
My apologies for the silence. I've been reading from time to time but unable to bring myself to post.
Way too little sleep, too many attacks and no relief. Need this to let up (even a little) so that I can function somewhat normally again.
This isn't supposed to be life threating but I think it's attempting to kill me. For the first time in 12 years this thing has really gotten to me.
Again I apologize for being so silent, when/if things ease up a bit - I hope to be back.
Best Wishes to all,
Tom
|
|
 IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: Been silent - can't shake the nightmare
« Reply #1 on: Jul 29th, 2006, 9:39am » |
Quote Modify
|
Yo dude!!!!
step up and feel good!
Things will always improve.
Hang in there
type favorite cliche here 
E
ps you know it will 
|
|
IP Logged |
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.
|
|
|
Sean_C
Guest
|
|
Re: Been silent - can't shake the nightmare
« Reply #2 on: Jul 29th, 2006, 9:44am » |
Quote Modify
 Remove
|
No need to appologise Tom, everyone in here knows what your feeling.
What are you using for preventatives and abortives if any??
Keep the faith bro,
Sean.......................................................
|
|
IP Logged |
|
|
|
maffumatt
Guest
|
|
Re: Been silent - can't shake the nightmare
« Reply #3 on: Jul 29th, 2006, 9:50am » |
Quote Modify
Remove
|
Hang in there brother, your not alone.
Matt
|
|
IP Logged |
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: Been silent - can't shake the nightmare
« Reply #4 on: Jul 29th, 2006, 10:10am » |
Quote Modify
|
Stay strong dude, it can only get better...you just need to ride it out like you have done before!!
You WILL Do It!!!!! 
|
|
IP Logged |
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
|
|
|
Jackie
CH.com Alumnus
New Board Hall of Famer
Go For It!!!
Gender: 
Posts: 2963
|
|
Re: Been silent - can't shake the nightmare
« Reply #5 on: Jul 29th, 2006, 10:29am » |
Quote Modify
|
on Jul 29th, 2006, 9:44am, Sean_C wrote:
What are you using for preventatives and abortives if any??
|
|
I don't like to give advice on meds.....
But....when Blake would get really, really bad I would change things up a bit....
The beast is a smart SOB and sometimes a change in the battle plan helps.
Bless your heart, Tom.....better days are coming....
Love & Hugs,
Jackie
|
|
IP Logged |
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: Been silent - can't shake the nightmare
« Reply #6 on: Jul 29th, 2006, 10:30am » |
Quote Modify
|
Hi Tom. I've wondered about you...
When you're feeling so down, it's probably the best time to be active here. I think it makes it a little easier for us to be surrounded by this bunch of sick bastards... especially since they know exactly how we feel.
Please contact me if you ever want to discuss a different plan of attack, OK? There's hope....
hugs and pf wishes, nani
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
George_J
CH.com Alumnus
New Board Hall of Famer
White-Breasted Nuthatch
Gender:
Posts: 4222
|
|
Re: Been silent - can't shake the nightmare
« Reply #7 on: Jul 29th, 2006, 11:38am » |
Quote Modify
|
Even when you know it's going to end eventually, it doesn't get any easier, does it?
Someone wrote here a couple of weeks ago that his tolerance for CH has diminished over the years. I'll second that.
Frankly, I'm just tired of them. Tired of fighting the same battles over and over again.
I agree with Jackie that a change in the plan might help.
In the meantime, you know the drill:
1. Suck it in.
2. Cowboy up.
It'll end, and you'll be fine--you know it will.
Best regards and PF wishes,
George
|
|
IP Logged |
Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
|
|
|
Sean_C
Guest
|
|
Re: Been silent - can't shake the nightmare
« Reply #8 on: Jul 29th, 2006, 11:46am » |
Quote Modify
Remove
|
on Jul 29th, 2006, 11:38am, georgej wrote:Frankly, I'm just tired of them. Tired of fighting the same battles over and over again.
I agree with Jackie that a change in the plan might help.
In the meantime, you know the drill:
1. Suck it in.
2. Cowboy up.
It'll end, and you'll be fine--you know it will.
Best regards and PF wishes,
George |
|
Words to live by George 
"Our greatest glory is not in never falling, but in rising every time we fall."
-Confucius
Kick his asss Tom
Sean..................................
|
|
IP Logged |
|
|
|
Jasmyn
CH.com Alumnus
New Board Hall of Famer
Each day will be a new trick in life's journey
Gender:
Posts: 2762
|
|
Re: Been silent - can't shake the nightmare
« Reply #9 on: Jul 29th, 2006, 12:28pm » |
Quote Modify
|
Hang in and hang on, you can do it Toaster man.
(((((((((((((((  )))))))))))))))))
|
|
IP Logged |
Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
|
|
|
chewy
Guest
|
|
Re: Been silent - can't shake the nightmare
« Reply #10 on: Jul 29th, 2006, 12:31pm » |
Quote Modify
Remove
|
Are you able to get the meds that are effective for you?
What is it you use?
|
| « Last Edit: Jul 29th, 2006, 12:31pm by chewy » |
IP Logged |
|
|
|
stevegeebe
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1342
|
|
Re: Been silent - can't shake the nightmare
« Reply #11 on: Jul 29th, 2006, 12:36pm » |
Quote Modify
|
You're right Jackie.
See your Neuro and see if you can increase some meds and maybe add something else.
That has worked for me as well.
Hope it ends soon.
Steve G
|
|
IP Logged |
|
|
|
TxBasslady
CH.com Alumnus
New Board Hall of Famer
Bass fishin' is a h00t It's the catchin' that sux
Gender:
Posts: 3201
|
|
Re: Been silent - can't shake the nightmare
« Reply #12 on: Jul 29th, 2006, 1:02pm » |
Quote Modify
|
Mega vibes to 'ya Tom
Jean
|
|
IP Logged |
How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
|
|
|
alchemy
CH.com Alumnus
New Board Hall of Famer
get out of my head
Gender:
Posts: 1639
|
|
Re: Been silent - can't shake the nightmare
« Reply #13 on: Jul 29th, 2006, 1:09pm » |
Quote Modify
|
Hang in there Tom, you can do it. Were all here for you
|
|
IP Logged |
|
|
|
Dragnlance
New Board Hall of Famer
Monster bait
Gender:
Posts: 1129
|
|
Re: Been silent - can't shake the nightmare
« Reply #14 on: Jul 29th, 2006, 7:40pm » |
Quote Modify
|
Some days I wonder how any of us survive. Even when the break comes, the day after is just as bad because of the exhaustion.
We were given an extra dose of strength and ability to survive. You will survive, and we are here to help you do it.
(whether you like it or not)
Dragn
|
|
IP Logged |
|
|
|
burnt-toast
New Board Hall of Famer
Gender:
Posts: 1686
|
|
Re: Been silent - can't shake the nightmare
« Reply #15 on: Jul 30th, 2006, 11:35am » |
Quote Modify
|
E-Double, Sean, Matt, Jonny, Jackie, Nanny, George, Jasmyn, Chewy, Steve G, Jean, Alchemy, Dragn
Rest assured, I’m physically and mentally exhausted but not giving up the fight. Thanks for the all the heartfelt encouragement and advise I really do appreciate it. After getting my magical 2.5-month break, this nightmare has returned with a vengeance. It clearly intends to make up for lost time before settling in to what I hope will be more typical levels.
The last few months have been brutal averaging 4 attacks daily, 65% Kip 8 and above, durations averaging 1.25 hours with several 3.5 to 4.5 hour marathons. Key hours are between 21:00 and 06:00. As soon as I attempt to rest the fun begins.
My physical and mental abilities are very distressed. My speech is affected, I struggle to find even simple words, poured my coffee into an ashtray and have frozen a 5lb. bag of potatoes. I feel like a blithering idiot – sleep deprivation is far too often overlooked as a serious side effect of this disease.
My Neurologist stepped our visits up to monthly but there’s not much new in CH research/treatment. We’ve discussed/researched nerve blocks, implants,
histamine desensitization. The risk/reward factors aren’t real great but I guess I’m going to have to make a choice if things don’t ease up soon.
As far as meds. – preventatives = ye ole, chronic’s tonic of 1200mg Lithium Carbonate, 720mg Verapamil, 9mg Melatonin daily with 4-520mg Prednisone tapers annually. At my physical limits with the Lithium/Verapamil (hand tremors, leg swelling), discussed Depakote and Topomax with the Neurologist but both of us have serious concerns about using these in long-term treatment. Currently attempting to slowly discontinue use of Lithium/Verapamil. If backing off of these medications doesn’t make things worse we’ll begin experimenting with other meds. There’s a relatively new medication out that reportedly blocks pain delivery/receptors in the nerves. Not sure if it will pan out but we’re starting to look into it. Nani – I’ll be taking you up on your offer if it doesn’t and will surely fill everyone in if it does.
As previously stated abortive treatments O2-w/rebreather, Zomig, Imitrex, Caffergot gave absolutely no benefit. Drinking very hot tea and applying ice directly to my eye, temple, nose, forehead and scalp provides the best distraction.
Jonny you said it best – It’s not worth going PF free because dreading this nightmare’s return is worse than knowing what to expect.
Best wishes,
Tom
|
|
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
|
|
|
Charlie
CH.com Alumnus
New Board Hall of Famer
Happy to be here
  
Gender:
Posts: 14968
|
|
Re: Been silent - can't shake the nightmare
« Reply #16 on: Jul 30th, 2006, 9:20pm » |
Quote Modify
|
The thing is that you posted here. That means you're on the right track. Keep after the bashtard though.
My advice though is to stay away from draconian medical stuff.
Charlie 
|
|
IP Logged |
There is nothing more satisfying than being shot at without result---Winston Churchill
|
|
|
Sean_C
Guest
|
|
Re: Been silent - can't shake the nightmare
« Reply #17 on: Jul 30th, 2006, 10:05pm » |
Quote Modify
Remove
|
Tom, call Nan.
Sean..................................
I hope you get some pf time soon bro
|
|
IP Logged |
|
|
|
kevinpix
New Board Veteran
treat others with respect
Posts: 184
|
|
Re: Been silent - can't shake the nightmare
« Reply #18 on: Jul 30th, 2006, 10:38pm » |
Quote Modify
|
Be careful with verapamil, got bad withdrawl from it. Ever use oxygen? Works wonders for me. Hang in there, have faith the pain is on it's way out!!!
|
|
IP Logged |
|
|
|
chewy
Guest
|
|
Re: Been silent - can't shake the nightmare
« Reply #19 on: Jul 30th, 2006, 10:44pm » |
Quote Modify
Remove
|
Might be time for another pred. taper buddy.
Could give some relief time to catch up on sleep and energy.
Quote:| Be careful with verapamil, got bad withdrawl from it |
|
What withdrawal symptoms to you get with verapamil ?
|
|
IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: Been silent - can't shake the nightmare
« Reply #20 on: Jul 31st, 2006, 7:27am » |
Quote Modify
|
Tom,
A lot of what you describe not only sounds like a typical beat down from the attacks but also like what was going on with me when we discovered lithium toxicity (not to scare ya) the slurring......memory......this can also be from just getting a$$ kicked but look out for it as well
Have you had your levels checked recently?
Good luck
|
|
IP Logged |
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.
|
|
|
PollyPocket
CH.com Alumnus
New Board Hall of Famer
Someone I am is waiting for my courage.
Gender:
Posts: 2496
|
|
Re: Been silent - can't shake the nightmare
« Reply #21 on: Jul 31st, 2006, 8:52am » |
Quote Modify
|
Hang in there Tom. We're here for ya whether posting or silent, and we all know that tired of going thru it feeling.
Vibes for pf time and rest comin your way.
Hugs,
Jen
|
|
IP Logged |
“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Been silent - can't shake the nightmare
« Reply #22 on: Jul 31st, 2006, 9:03am » |
Quote Modify
|
Tom I don't know how I've missed this and I'm so sorry that I have. You've always been right here for so many of us and the least we can do now is be here for you in return.
If you haven't tried O2 DO.. for me its simply incredible.
Have you tried Red Bull? Surprisingly thats very effective for a lot of people too if you can chug it at the first sign of an attack. It tastes like shit and I hate it but it DOES help a lot of the time.
I can only reiterate what Sean said too.. Call Nani!
Before I find your number and call YOU! LOL You've been warned!
We love you Tom, we want the best for you and we want you pain free.
lots of love
Helen xxx
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Ghost
CH.com Alumnus
New Board Hall of Famer
Farting relieves the pressure
Gender:
Posts: 4024
|
|
Re: Been silent - can't shake the nightmare
« Reply #23 on: Jul 31st, 2006, 9:12am » |
Quote Modify
|
If it helps I am sending some Vibes .... Hang tough and you too will overcome.
Mike
|
|
IP Logged |
Illigitimus Non Tatum Carborundum
If all men are endowed by their creator, why was mine so short sighted?
***WARNING*** Oxygen will rust your pipes!
|
|
|
jimmers
CH.com Alumnus
New Board Hall of Famer
Hello GOD! The gene pool needs some chlorine!
Gender:
Posts: 2092
|
|
Re: Been silent - can't shake the nightmare
« Reply #24 on: Jul 31st, 2006, 10:15am » |
Quote Modify
|
Hang in there Tom! You never have to apologize to Family with what your going through.
Don't forget, Hunting season is right around the corner! Maybe you'll get a crack at the "Ghost" you've been looking for. 
Seeya,
Jimmers
|
|
IP Logged |
I don't suffer from INSANITY; I'm enjoying every minute of it!
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss