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        New Message Board Archives >> 2006 General Board Posts >> Been silent - can't shake the nightmare
        
(Message started by: burnt-toast on Jul 29^th, 2006, 9:33am)

Title: Been silent - can't shake the nightmare
Post by burnt-toast on Jul 29^th, 2006, 9:33am

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

Title: Re: Been silent - can't shake the nightmare
Post by E-Double on Jul 29^th, 2006, 9:39am

Yo dude!!!!

step up and feel good!

Things will always improve.

Hang in there

type favorite cliche here ;)

E

ps you know it will :)

Title: Re: Been silent - can't shake the nightmare
Post by Sean_C on Jul 29^th, 2006, 9:44am

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.......................................................

Title: Re: Been silent - can't shake the nightmare
Post by maffumatt on Jul 29^th, 2006, 9:50am

Hang in there brother, your not alone.
Matt

Title: Re: Been silent - can't shake the nightmare
Post by Jonny on Jul 29^th, 2006, 10:10am

Stay strong dude, it can only get better...you just need to ride it out like you have done before!!

You WILL Do It!!!!! [smiley=bigguns.gif]

Title: Re: Been silent - can't shake the nightmare
Post by Jackie on Jul 29^th, 2006, 10:29am

on 07/29/06 at 09:44:09, 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

Title: Re: Been silent - can't shake the nightmare
Post by nani on Jul 29^th, 2006, 10:30am

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

Title: Re: Been silent - can't shake the nightmare
Post by georgej on Jul 29^th, 2006, 11:38am

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

Title: Re: Been silent - can't shake the nightmare
Post by Sean_C on Jul 29^th, 2006, 11:46am

on 07/29/06 at 11:38:13, 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 ;;D

"Our greatest glory is not in never falling, but in rising every time we fall."

-Confucius

Kick his asss Tom ;)

Sean..................................

Title: Re: Been silent - can't shake the nightmare
Post by Jasmyn on Jul 29^th, 2006, 12:28pm

Hang in and hang on, you can do it Toaster man.
((((((((((((((( [smiley=hug.gif] )))))))))))))))))

Title: Re: Been silent - can't shake the nightmare
Post by chewy on Jul 29^th, 2006, 12:31pm

Are you able to get the meds that are effective for you?

What is it you use?

Title: Re: Been silent - can't shake the nightmare
Post by stevegeebe on Jul 29^th, 2006, 12:36pm

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

Title: Re: Been silent - can't shake the nightmare
Post by TxBasslady on Jul 29^th, 2006, 1:02pm

Mega vibes to 'ya Tom ;)

Jean

Title: Re: Been silent - can't shake the nightmare
Post by alchemy on Jul 29^th, 2006, 1:09pm

Hang in there Tom, you can do it. Were all here for you

Title: Re: Been silent - can't shake the nightmare
Post by Dragnlance on Jul 29^th, 2006, 7:40pm

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) ;;D ;;D ;;D

Dragn

Title: Re: Been silent - can't shake the nightmare
Post by burnt-toast on Jul 30^th, 2006, 11:35am

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

Title: Re: Been silent - can't shake the nightmare
Post by Charlie on Jul 30^th, 2006, 9:20pm

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 http://www.netsync.net/users/charlies/gifs/VIBES & MORE.png

Title: Re: Been silent - can't shake the nightmare
Post by Sean_C on Jul 30^th, 2006, 10:05pm

Tom, call Nan. ;)

Sean.................................. :)

I hope you get some pf time soon bro :)

Title: Re: Been silent - can't shake the nightmare
Post by kevinpix on Jul 30^th, 2006, 10:38pm

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!!!

Title: Re: Been silent - can't shake the nightmare
Post by chewy on Jul 30^th, 2006, 10:44pm

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 ?

Title: Re: Been silent - can't shake the nightmare
Post by E-Double on Jul 31^st, 2006, 7:27am

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

Title: Re: Been silent - can't shake the nightmare
Post by JenniferD on Jul 31^st, 2006, 8:52am

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

Title: Re: Been silent - can't shake the nightmare
Post by LeLimey on Jul 31^st, 2006, 9:03am

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

Title: Re: Been silent - can't shake the nightmare
Post by Ghost on Jul 31^st, 2006, 9:12am

If it helps I am sending some Vibes .... Hang tough and you too will overcome.

Mike

Title: Re: Been silent - can't shake the nightmare
Post by jimmers on Jul 31^st, 2006, 10:15am

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. 8)

Seeya,

Jimmers

Title: Re: Been silent - can't shake the nightmare
Post by rickyshot on Jul 31^st, 2006, 11:38am

I have had luck with DHE too. Long intervals between episodes. Shorter duration. Hope it continues to work for me.

Title: Re: Been silent - can't shake the nightmare
Post by Mattrf on Jul 31^st, 2006, 12:00pm

Tom I am so sorry it is getting to you, I know how you feel, I can only say things will get better even if they seem they wont. Be strong my friend and you will get through it.
PF wishes and vibes coming your way.

Matt