Just when ur skippin through cluster hell with one or two K3 - K5 Ch at night with some manageable shadows during the day.
    BOOM  full blown K7-K8 out of a sound sleep (and pretty cool dream I might add).  
    Paced it away around the back yard for about a half hour.  It's 41 degrees out which helps.  I can only hope the neighbors don't see a crazy old fat guy in his underwear pacing back and forth and call the nut squad on me.
    I am only on Verapamil at this point whith minor hits at night, but decided to take an Ambien tonight.  I can't say that caused it but I was sure disoriented when it woke me up.
    I'll try nuthin tomorrow night and see what happens.
    Oh well, it's 45min later and almost completely gone.  Can't bitch about that too much.  We all have had much much worse.
    I haven't whined in awhile and just felt like it.  Sorry
                               PF TO ALL
                                  JPC

Have you tried Melatonin? I know it keeps a lot of us from waking up during the night... It's just a supplement, too.

Mystina

yeah,  I tried 9mg Melatonin along with an Ambien and was still getting an attack after about 1 hr sleep.  This was about a week ago and I was getting hit all night long after 1 to 1-1/2 hrs sleep
    Seems like the first night I got any quality sleep was after I didn't take anything.  Could of been the Verapamil kickin in, not sure.
    This whole episode in not remotely close to what I went through six years ago.  Not as much pain this time but the lack of sleep thing has really beat me up.  Very hard to function during the day.
     I still keep saying to myself  "the last one was the last one"  eventually it will come true.

Was pushing the beast back every other hour last evening, and then around 01 in the morning it woke me from a dream, trying to up the ante on the kipscale. Am glad to say that I was able to push it back again, so it remained at kip5 for about 20mins. I am waiting for the last one too now. I actually slept 5 whole hours last night so I am feeling a little more perky this morning:-)

maybe it is the full moon
4am he got me with k8 for about 20 min

(Was pushing the beast back every other hour last evening)
I feel for you. I was doing that for a couple of weeks.  Definately knocks the snot out of you.
what prevents are you on?
I hope your next one doesn't comes and you sleep til noon.  Work can wait.
                         JPC

Hey, I am not using any meds or anything this time around. I have a little experiment going to check if not using anything will shorten my cycle. Usually it lasts about three months. I have found something that works for me when the HA kicks in though, I do as many push ups as I can, and that cuts it short in a matter of seconds. Only 3-4 kip8-10's has slipped by that regime, but that is because I have been too slow hitting the floor:-)

Carl - took me three tries before I gave the melatonin a "chance". I'd try it one night and it didn't work so I'd just say it doesn't work.

The third time I tried it I stuck to it a couple of weeks and lo and behold - it worked and has been working ever since. I NOW sleep at night and am much more rested for when the demon comes to visit during the day.

Of course he really loves me early in the mornings (about 4 am is his usual visiting time) but we usually just get up with about a 4 and he gets a blast of O2 and decides he doesn't like me in the mornings, so he goes away until after I've had my coffee and get in a better mood. Then he sometimes comes back for a rear end kickin'. I keep telling him we've got to break off our affair, but he keeps stalking me. What can a girl do? :o

Hope you get some relief soon....

Hugs BD

I just wanted to add....crap poop crap and crap again.
thebb [smiley=hammer.gif] [smiley=hammer.gif] [smiley=hammer.gif]

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

to quote Homer Simpson..."CRAAAAAAAAAAAAP!"

and of course, crap, and also crap.

poo

Just Plain Carl wrote on Oct 15^th, 2008 at 12:29am:

I can only hope the neighbors don't see a crazy old fat guy in his underwear pacing back and forth and call the nut squad on me.     I am only on Verapamil at this point whith minor hits at night, but decided to take an Ambien tonight.  I can't say that caused it but I was sure disoriented when it woke me up.

About the nut squad: We had a nieghbor (we live in a middle apartement, so neighbors on all 4 sides, up, down, & sideways) knock on our door at 3 am asking if he needed to call the police. I responded "No, my husband is just sick." So...can understand the worry about nieghbors! *lol*
About the Ambien: Jon also has frequent bouts of insomnia & doesn't want to take sleeping pills because in the past he's gotten headaches (but before he was officially diagnosed so can't definitely say it was cluster but about 99.9 percent it was, unofficially). Is this a frequent thing, does anyone else share this experience?

Last night I took an ambien and 9mg melatonin and had three attacks after falling asleep.

The night befor I only took the 9mg of melatonin and slept through the night.  I will try that tonight and see what happens.

I just have a bad feeling about the ambien.

I'll let you know

                              JPC

Carl,
Ambien gave me the worst nightmares I've ever had.
My expierence is anything that makes me drousy is a trigger. Melatonin and Ambien included.
all the best
thebb

PS. Crap crap crap and holy crap. Some sleep would be nice. :o

so much for melatonin
slept from 10:00pm to 11:15   up with k6-k7 for 30 min
slept from 12:30am to 4:00     up with k2-k3 for 15 min
slept from 5:30am to 6:45       up with k7-k8 for 30 min

I think I am just as well off not using anything

I am very lucky the attacks are not so severe or lengthy
got to take the good with the bad

so,   CRAP AGAIN

Just Plain Carl wrote on Oct 15^th, 2008 at 12:29am:

Just when ur skippin through cluster hell with one or two K3 - K5 Ch at night with some manageable shadows during the day.    BOOM  full blown K7-K8 out of a sound sleep I am only on Verapamil at this point

What's up with the verap Carl, when did you start with it and where you at with dosage?  It can be adjusted gradually if side effects have been minimal.  Give the doc a call on how it's been going, depends what dosage you're at, could be a mid-cycle arriving, which can break through a previous level of protection that seems to have been barely containing it.  With doc's ok, upping a step at this point might give better results through this period, decending gradually again as this period passes.  It could be only for a few weeks perhaps.

Hi Kev,
    I'm on 240mg of Vrap. Have been all month.  
I do have the ok to up it to 360mg.  I think I will start that today.
    Judging from past episodes, I should be at the end of this one.
However, this bout has been so much different the prior ones.
                        PFD's to every one
                              JPC

Other than the pain, sleep has to be the biggest problem with CH for me. This cycle I sleep sone day then I'm up  for 48hrs. I don't try to knock myself out because when I do I wake dazed and delay reacting to the hit, and over my 20yrs sufferd a few too many kip-10's because of this, I think.

Just a suggestion, but I've only went to the ER twice for CH, but it has been to get an injection of DHE, and this will knock out all my shadows and give at least 24hrs to sleep untill the cows come home.

Hoping to help, Don

Just Plain Carl wrote on Oct 18^th, 2008 at 7:19am:

so much for melatonin slept from 10:00pm to 11:15   up with k6-k7 for 30 min slept from 12:30am to 4:00     up with k2-k3 for 15 min slept from 5:30am to 6:45       up with k7-k8 for 30 min

Hey Karl,

Sorry things are still "interesting" for you.  CRAPPPP is right!

I find it takes a week or so for the Melatonin to build up in your system and take effect.  One night typically doesn't do it.  I start at 6mg and ramp up over that week by 3mg every other night to get to 9-12mg.

Don't get impatient with the tweaks your making.  It takes time for a lot of this stuff to make an impact.

I'm with Kevin on the verapamil dosage.  If you're cleared to go up then do it.  Waiting for your cycle to end might take a while.  If you can get some relief in the mean time then take it.

Good luck...

-Dennis-

Thanks Dennis,
    (I find it takes a week or so for the Melatonin to build up in your system and take effect)
    That seems to make sense.

    Last night was an "UNCRAP" night.  I just have that feeling that I am at the end of my cycle.  I didn't up the Vrap but I did take 20mg of Prednisone before I went to bed at 1:00am.  Slept until 9:30.  Woke up a couple time with some shadows but had no hits.  I feel mighty fine today.

                            Happy UNCRAP to everyone
                                   JPC

Good deal JPC!!! I will add a few more craps though.
Crap, crap and crap again.
This is a pretty cool crap thread. 8-)
thanks
thebb

Crap Again,
    Couple of pain free nights (nice to get some sleep), but back in the groove last night.  Oh well, today is another day and "The Last One Was The Last One"
                             PFD's to all
                                 JPC

If you got the ok from your doc to increase the Verap to 360mg daily then give it a try. I am on 480mg daily and anything less opens the door for the beast to nail me.

Hope you find the right cocktail that works for you bro! Hang in there!

crap again. Stupid head.
thebb :-X

And crap, crap, crap,crapcrap, crap and crap some more dammit.
4th week. Did i mention crap. I'm still kicking demon bastard.
thebb
02,02,02
sometimes nothing works,whaa whhaaaa whaaa. :'(

Ongoing Crap.

I'm still in the crap zone myself.  It has been much worse before, but I can still whine if I want to.  CRAP, CRAP and CRAP.

8th week for me.  I should be very close to being done with this.  However, this episode is so much different from my last one, it's hard to tell.

Oh well, tonight is another night and tomorrow is a new day.

                                    UNCRAP on Ya

                                           JPC

CRAP is right Im on my 160th week or there about I've got no advise just hang in there it will pass, I hope it passes sooner than later.
Wishing you pf days and nights,   Phil 8-)

160th week !!!!!!!

Man I feel for you.   Thats like Mega Crap.

                            Hang In There Bud
                                   JPC

  160 or 6 it is all the same once youre sleep is disrupted for more than a month I think the fatigue is about the same, on the bright side when I get 3-4 hours sleep it almost feels like a full nights sleep.  I wasn't looking for sympathy I was just putting my two cents in and truely hoping the best for you.
  If I where you I would up the Verap to break the cycle the beast has a mind of its own and you dont want to end up being chronic when you could have broke the cycle.  Now you hang in there I have come to terms with it so Im good here,  even though it is MEGA CRAP.  Go kick some demon a$$.  pf days and nights to all.    Phil

Coming to terms with this is the major part of the battle.

Last night was another one for the crap chronicles.  Had a K8-K9 for about a half hour.
Major shadow for a couple more hours.  Didn't want to, but I took a Trximet and got about 4 hours sleep. Wigged me out all day.

Anyway, I picked up my scrip for 02 today.  Hopefully be hooked up by tomorrow.

                            Good Sleep To Ya Bud
                                    JPC

Hi JPC  [smiley=wave.gif]

Sorry to hear that you had a rough night again.  I hope that the O2 helps you.  I also hope that you get some good sleep tonight.

Phil slept maybe a half an hour last night.  He appears to be sleeping right now.  I just know that when I leave for work in a little while he will wake up no matter how quiet I try to be.

Anyway, I just really wanted to say hi to a fellow Michigander.

Hugs  [smiley=hug.gif]

Jen

Hey guys, Having a crappy time tonight too. Tomorrow is my last Prednisone dose and the Beast is hungry tonight. Fought off a 7 that came right back as a K-8 5min later. Thank God for O2.

My last 2 cycles, the night before the last dose I had Kip-10's so the nerves are on edge. Had the wake up calls all last night so setting here tired, with my shot ready but trying to hold out, just a little longer. Just some nerve to lay down.

Good night & Good Luck, Don

Hi Jen,
    JUst got home with the O2.  Went to Binson's.  It was another adventure.

Tell Phil not to sleep with those wooden shoes.

                                 

Don,

    Sure wish there was something that would be a guaranteed knockout at night


                          All The Best Guys
                                 JPC

Just Plain Carl wrote on Oct 29^th, 2008 at 2:15pm:

Hi Jen,     JUst got home with the O2.  Went to Binson's.  It was another adventure. Tell Phil not to sleep with those wooden shoes.                                   Don,     Sure wish there was something that would be a guaranteed knockout at night                           All The Best Guys                                  JPC

LOL ;D my neuro just perscrided these shoes,  see ya next Tulip Time.

Hi Peeps

Well i feel crap for yas im not in cycle atm but when i am its the sleepless nights that get me down so much, PF vibes to you all hope you can all get some sleep we all know to well what sleepless nights feel like

PF wishes for ya all
Brian

It used to be that both my CH's and my cycles followed a predictable pattern.  But now there doesn't seem to be much of a pattern to either.  My last cycle ended abruptly with a nasty 4 hr. K9-7, before that it would always taper off.

In this cycle I'm being attacked in the early evening, and when it ends, I take an over the counter sleep aid and get a pretty good night's sleep.

Best wishes for PF days and nights and a quick end the cycle.

           Johnnystar

I did get some sleep this morning. I am just so darn conservative with my knock out shot, for good reason. For aborting......

All of us have to fight the beast in our own ways on our own terms but in the end we do win the battle. We survive and carry on our lives as best we can. It sure helps when we can sleep or get a PF break but when we don't coming here and being with others who know is about the best thing for us.

Carl, I should probably say I can wait to hear about your 1st abort with O2.  Best to All,  Don

All of us have to fight the beast in our own ways on our own terms but in the end we do win the battle. We survive and carry on our lives as best we can. It sure helps when we can sleep or get a PF break but when we don't coming here and being with others who know is about the best thing for us.

Well said My Man.

We'll see about the O2 abort.  Now that I have all the tools, the beast just may take a hike.  Would suit me just fine.

Hope you have a more tolerable evening
     
                                        JPC

Just Plain Carl wrote on Oct 29^th, 2008 at 2:15pm:

Hi Jen,     JUst got home with the O2.  Went to Binson's.  It was another adventure. Tell Phil not to sleep with those wooden shoes.                           All The Best Guys                                  JPC

I knew it had to be those shoes.  I told him to quit wearing em.  LMFAO  ;D

Good luck with the O2.  

Hugs,

Jen

Crappy crap crap, poop crapz. Same stuff different night. :o
Fight on gentlemen.
all the best
the bb

A double Bullcrap evening.

gettin tired of this crap.

Well Carl that 02 should help ya out with the sleep. Hit the 02 and abort, hit the sack, wake up, abort again and you may just get some ZZZZZZ's if you can get past REM. Four hours last night, I'm good to go. Got past REM at 2 am, up at, 6 go to work. :P
all the best
thebb

Just felt like sayin CRAP.

The O2 is working well.  Knocks the mutha out in about 10 min.

Luckily I am near the end of Cycle (fingers crossed) and am only dealing with 1 hit per night.

So anyway, Crap on the one hit.

                                 PFD's On You All
                                       JPC

One hit is worth at least one crap. Crap crap crap crap. But just one today. Oh maybe tonite I'll get lucky.. :-/
all the best
the bb

Crap, crap, crap. Me too. Got hit with a K-10 this morning @ 4am after a couple hours sleep, gave myself the shot & slept 4 more. Thebb you said it. Carl you got it. Really gets tuff. I've been at the point where I knew I could work but 'should I drive?'. Made it though.

I feel that way right now. Hang in there guys a better day is coming             Best, Don

Well I am just full of crap lately...he.hee.hee.
crap. K tank ain't big enough ;)
the bb

wrote on Nov 5^th, 2008 at 10:17pm:

Well I am just full of crap lately...he.hee.hee. crap. K tank ain't big enough ;) the bb

   Im full of crap to but no kip 10's and I am thankful for that,   hang in there Don.  I've even got some sleep in the past few nights thanks to prednisone but  I started tappering down yesterday and already can feel it coming back,  I'll see what happens tonite.  
Phil 8-)

Quote:

I've even got some sleep in the past few nights thanks to prednisone but  I started tappering down yesterday and already can feel it coming back,  I'll see what happens tonite.

I was up for 6 days straight one year on a long taper. Grew some rightous man boobs, and was baking cookies at 3:00am. :o

I hate prednipoison. Worked a few times though.
Kick A$$ Phil

In '05 I was on 80mgs and got totaly nuts. Went out and bought 7.5 acres of property without the wifes knowledge and am paying for it to this day. I don't remember half the things I did. I do remember having sugery on my CH side eye to implant drainage tubes for a blocked tear duct. Got hit as I was rolled out of the OR.

Told Helen, "give me the stadol" and proceded to use it, the nurse freaked and grabbed it out of my hand, "you can't do that". Like I said I was nuts. Bad thing is I thought I was on top of the world. Never again says the Neuro. I'm fine @ 60mgs, and have been on that twice since. Just got off a week ago. What we do....

I think this mornings '10' may be the last for this cycle. (educated guess) Tonight will tell, I should be coming out of peak. OK long winded done. ,Don

Here's a big UNCRAP on you guys.

Hope you all have a good night with lots of sleep.

I'm still on one minor hit after I go to sleep.  I can live with that

                          Uncrap On Ya
                                JPC

Quote:

In '05 I was on 80mgs and got totaly nuts. Went out and bought 7.5 acres of property without the wifes knowledge and am paying for it to this day.

[smiley=deal2.gif] [smiley=spit.gif] [smiley=spit.gif]
I cant touch that one. :D
Thanks for the uncrap

Hey anyone who gives a crap jump in ...it's a crap thread.
The taper I was referring to started at 100mg for 4 day's, I drove the wifey nutso. No headaches though ;)

  Yep pred sucks but the wife works nights and is always impressed at what I got done when she gets home,  I may not sleep much while on pred but atleast I get some pf sleep, any time I get 3-4 hours Im happy.  The pred side affects are alittle different this time my skin is burning and I cant stop itching and the man boobs hope I dont start milkin'  oh well what the hell!!!! You guys dont worry about me I'll keep on  keepin' on.
   Phil 8-)

Huff huff and away!!!
the bb

wrote on Nov 5^th, 2008 at 10:31pm:

Quote: I've even got some sleep in the past few nights thanks to prednisone but  I started tappering down yesterday and already can feel it coming back,  I'll see what happens tonite.   I was up for 6 days straight one year on a long taper. Grew some rightous man boobs, and was baking cookies at 3:00am. :o I hate prednipoison. Worked a few times though. Kick A$$ Phil

ROTFLMMFAO ;D

Feel for you.  I am a trainwreck myself. Havent got more than 2 or 3 hours sleep at a time in 3 weeks.  Black bags under my eyes.  People see me and woder what happened to me, I look terrible.  And thats with cafergot and oxygen.  Dont know how I survived 20 years before I discovered O2.  Sometimes I awake from pain of something alive twisting and writhing behind my eye.  Scared to sleep.  Been coming in waves every few hours day and night....

Here's a couple of craps for ya ...Crap crap crap crap. and another one for me.........CRAP.
the bb
Hi Allen ;)

I think it's time for an UNCRAP.  Made it through last night with nuthin.   Slept from 11:00pm to 8:00am.

I wish the same for all of you.  No sleep sucks.

                                  UNCRAP on Ya

                                        JPC

That's sweet news Carl.  You deserved a good night's rest.  

Here's wishing you another undistrubed trip to dreamland tonight...

-Dennis-

Hope your still doing better Carl. Not so much crap here but, 3 to 4 at night.
Sleep, who needs it. Crap
the bb

Doin fine.  Slept all night Friday, 1 attack Saturday, slept all night last night.

Would like to say I'm at the end of my cycle but don't want to jinx myself.

3 to 4 attacks a night doesn't get you much sleep.  Hope things get better for ya soon

                                    Uncrap On Ya
                                       JPC

 I hope the word crap doesn't offend anyone ;D  My virgin eyes cant handle it :o  
 Hang in there John Bb,  its only kinda crap here still getting 1 or 2 hits a night but I've been toughing them out without the Imi witch seems to be helping alittle may shadows or migraine in my case are down to a 2-3 kip instead of the 5 I was at when doing 3-5 imi's a day,  and my big hits are only 30-45mins at a 5-7.   So it is still crap but not as crappy as it was.
  Pfdn to all,     Phil 8-)

How's this for ya Phil?
Fu(*^&)HPBU_(*&^&% no good _Go%$^^&5$^#%&#*^6 sumbit3467$$%&%*%&* demon bas^#$$&*$* fuc#$%^#er anyhow.
I bet your ears are just burning off now. :o :o :o :o
Hee.he..he ;) ;)

wrote on Nov 10^th, 2008 at 8:24pm:

How's this for ya Phil? Fu(*^&)HPBU_(*&^&% no good _Go%$^^&5$^#%&#*^6 sumbit3467$$%&%*%&* demon bas^#$$&*$* fuc#$%^#er anyhow. I bet your ears are just burning off now. :o :o :o :o Hee.he..he ;) ;)

 AAAAHHHHH MY EYEEZZZ!!!!!!!! [smiley=yikes.gif] [smiley=sgrin.gif]

Carl, I'm so glad to hear that your getting finally getting some sleep.  I'm so happy for ya.

Phil and BBZ - LMMFAO  [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]

Jeez,  thanks all you guys.  The support here definitely is powerful medicine.  Thats no crap.

and here is some crap info for yall              START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

                                            Uncrap On Ya
                                                   JPC

Just Plain Carl wrote on Nov 10^th, 2008 at 9:34pm:

Jeez,  thanks all you guys.  The support here definitely is powerful medicine.  Thats no crap. and here is some crap info for yall              START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE                                             Uncrap On Ya                                                    JPC

  WOW Carl ya gotta get all technical with the word ;D

Thats some cool crap there. Thanks Carl.

Well it seems my wake ups are starting to get spaced farther apart, finally. Got 2 nights in a row of good sleep then 1 of wake ups. It has been a while for that. Only wish I could give some of that to some of you guys who need it too.

I'm going with my brother and the guys to my brother inlaws cabin Thursday and I'm a little scared but I have my aborts so I'm going. Wish me luck. Going to hunt deer.     , Don

Shoot a big one Don. Glad ya got some sleep brother.
the bb

Hi Don  [smiley=wave.gif]

Glad to hear your getting some sleep too.  That's fantastic news.

I'm excited to hear that your going bambi slaying.  I hope that you have better luck than Phil's been having and you get a big buck.  If you do you better have pictures to share.

You've got all your ducks in a row, now go have some fun.

Smoochies  :-*

Jen (who's doing the happy dance for ya)[smiley=2vrolijk_08.gif]

bb & Jen,  Thanks, I need the support. Probably won't shoot anything but the crap but it's mostly about our little group getting together and chasing the deer around and having a few. (I'll be the designated driver for sure.)

I so need this trip and I do have what I need for any beastly visits. I should be back either Tues or Wed but if we're having big fun who knows. Ha ha. I don't think the deer are too afraid I haven't shot one since 2000, I've saw them but... I just love being out there, so quiet, fresh air.

Hopefully I'll have some good stories to tell on my return, if not some more crap to add. I am due for the big buck though.

Best to you all,  Don

Don,

I'm looking forward to hearing some stories.  Just make sure that you have some fun no matter what.  You deserve it.

Big Hugs  [smiley=hug.gif]

Jen

Triple Jinx Crap  The last two nights I've been back to the same ole crap.  Attack after 1 hour sleep.  Had a K7-K8 last night that was too late for oxygen.  Got hit with a K9-K10 this morning that the O2 wouldn't touch.  Should of kept my mouth shut.

Anyway
    Don, I expect to hear some great tale about you taking down a 12 point with your hunting knife.  Good luck to ya.  Watch out for the crazies.

                                                 Uncrap on Ya
                                                      JPC

JPC that really blows.  Here's a few for ya crap, crap and crap  >:(

Keep hanging tough ;)  This too shall pass.

Hugs  [smiley=hug.gif]

Jen

Carl, Sorry to hear that, really would like to shoot the beast for you, and I'm a good shot. Oh and my back up rifle does have a fold out bayonet on it, maybe I'll use that. tee hee.

I have a 1:00pm Neuro appt. then pick up a script and it's north bound for 3.7 hrs near Baldwin south of Cadilac. My brother & brother inlaw (actually he was with my deceased sister)will be there waiting. They will be calling me every hour until I arrive. (as usual)

Season opens Saturday, so we have time to shoot the shi-ot and I can watch them drink, I really don't mind, check out our gear, and just enjoy the woods.     Best, Don

Don where near Baldwin?  My parents have a cabin near Baldwin too, Ruby Creek.

I hope that your appointment today goes well and that you have a safe trip up north.

Shoot a big one  ;)

Jen

Near Wolf Lake, Eight mile & Foreman, offroad trails everywhere. We go to Luther to the bar & resturant a lot. Also Dublin grocery.

Gotta go. Hugs, Don

I know that area well Don.  Used to have a place near Irons.

Good luck hunting.

                                    JPC

Did some steelhead fishing in the past out that way.  Big buggers.   Got a place north of Harrison on Long Lake.

I just want everyone to know there is CRAP going on in Denmark. Has been for at least 6 months with no break and I am running out of hope. Nothing seems to work.... crap crap crap crap crap! If this keeps up until January I am sticking my head in the ocean and see if I can scare the stupid crappy thing away! The doc put me off sick for 6 weeks. Does anyone else want to talk about it if they have this problem? I feel so alone!!!! Crap Crap and more Crap. Frustrated Crap. Fed up Crap. Tired of it Crap. It makes my head feel on fire Crap. I dont want to eat anymore and all I want to do is sleep and be depressed Crap. GRRRRR Crap. Sophia :'(

Well, crap Sophia.  Sounds like you have some real major crap going on.  There's always hope and your in the right place to get it.  Come here and vent away, it's like therapy.  You have to keep eating to keep up your strength to fight the beast.  

I'll say a couple for ya....crap, crap and crap.  I'm sending some positive vibes your way  :-*

Big Hugs [smiley=hug.gif]

Jen

That's a bunch of crap Sophia.  What are you doing about it?

I hope you find something that works.

          Here's a BIG UNCRAP on ya

                      JPC

Hey Sophia,

I can understand your crappy disposition at this point.  CH is a shitty thing to have to deal with (I don't swear often, but to make a point the word SHIT fits).  You'll get through this, really you will.  Don't stop eating - I've seen the results of that.  You think you can't handle this now - try to handle it when your body doesn't have the nutrition it needs.  Vent away - this is the place to do it.  Most everybody here has been in your shoes (or can at least relate).  If you want to share what your trial and errors have been, you'll probably get some good advise.

Well I survived the trip, but like others here the crap did continue. had one good day and one bad day on & off, kept the crappy beast under control though. The only shot I fired was at a target and I hit the bullseye. I saw a few but didn't shoot. Two guys in my group got one.

We had great fun watching them out the kitchen window after dark, munching the achorns out there. Also got around 9 inches of snow that gave me a chance to put my truck in 4 wheel drive. (really didn't need it.) Got to be the designated driver and that wasn't much fun. the highlite of the night was this band playing a song that said, " It's hard to say I love you, when you're sitting on my face." I laughed hard.

Sophia, understand you are having crap in Denmark. This is not good. We want to help if we can, like the others have said please tell us what you are taking to get through this crappy time.                         Best,   Don

Carl, Irons is very close to where we were, I saw the sign for it. Not far from Dublin is it?

Kevin, I've been up to Long Lake. A friends Father (now passed) had a cabin there, it's been awhile so I'll have to call him to find out the location. Small world or state.

Best PF days, Don

Hey guys. Sorry to hear that you are having such a crap time. I have made some discoveries that really helped me a lot. I have had about a week of no hits since I have been taking Melatonin before going to bed. I still get bad shadows a couple of times during the day. I made a point of looking for the possible triggers. We know that strong smells are triggers, but I overlooked suttle smells. Furniture polish is my worst trigger. Any form of aerosol sprays are bad. I have found that I always get a bad shadow as soon as I walk into a supermarket where the smells and dust around washing powder and cleaning material and especially air conditioning. I even suspect soya sauce and tabasco sauce. These products are manufactured from a brewing/distlling processes, similar to some liquors. It could be coincidence, but there could be something there.
Hope some of this helps.

Rina

Don,
    Couldn't bag one eh?  I may go up to Fife Lake Thanksgiving weekend.  If I'm lucky I'll pass some meat your way.  I did the designated driver thing salmon fishing.  Know what you mean, not fun carting a bunch of drunks around.  By the way, there are two bars in Irons.

    I had a totally uncrap night last night, wishing the same to all of you.

It's time for another big UNCRAP on ya'll

                                        JPC

   

Thanks Carl, but I have about 4 days worth of crap here...cCRAAAAPPPPP.  Onward, fish-on.
the bb

Welcome home Don.  Sorry that the crap followed ya.  Little demon seems to follow where ever you go.  I was really hoping you'd get a big buck and have some awesome pictures for us.

bbz - I'm sorry that you're having such a crappy time of it.  

JPC - good for you having an uncrap night.

Thanks Jen

might just be time for a tinfoil hat and wooden shoes.

Don't try the wooden shoes, they don't work.  

Well, maybe they will work for you.  I still have a pair from when I was in high school and was a dutch dancer  ;D ;D ;D

Phil's been having a pretty crappy time.  I know he hasn't slept much in the past few days again.  I don't know about last night.  I got home from work and don't want to peak in the bedroom and wake him if he's sleeping.

Hoping has everyone has a great big uncrappy day!!!!!!!!

Just Plain Carl wrote on Nov 19^th, 2008 at 11:05pm:

might just be time for a tinfoil hat and wooden shoes.

   Im trying the tinfoil hat tonite keep your fingers crossed I'll let you know how it works ;D,   as for the wooden shoes you are the one that told me to stop wearing them I say give um a try they can't hurt unless you like to pace 8-).
  Hang in there guys and gals,    Phil 8-)

This post has become a really good and helpful post its like a venting post and the word crap seems to be the venting word of the time i like it

Sorry some you guys are in hell atm makes me feel a little guilty being pain free for now anyhow where getting really close to christmas my worst cycle of the year .

Pain Free wishes to you all this crap we live with is just well crap dont let it win guys

Brian

Brian,  don't ever feel guilty about being in the uncrap zone.  We all wish that for everybody.
                            Uncrap On Ya
                                  JPC

Just Plain Carl wrote on Nov 20^th, 2008 at 9:04pm:

Brian,  don't ever feel guilty about being in the uncrap zone.  We all wish that for everybody.                             Uncrap On Ya                                   JPC

Ditto  ;)

CRAP

The piece of crap just won't die

What flow rate are you running on the oxygen Carl? I huff at 40 till it settles down and drop to 25 till I’m feeling good. Then I stay on it at 10-15 for another 5 min.

Edit to add; I just realized that I didn’t get hit at all today! First day in 2 months I had a break. Knock on wood!

Roland. ;)

wrote on Oct 27^th, 2008 at 9:57pm:

CRAP is right Im on my 160th week or there about I've got no advise just hang in there it will pass, I hope it passes sooner than later. Wishing you pf days and nights,   Phil 8-)

Ha Ha Ha, I got you beat at 260 weeks [smiley=hammer.gif]

wrote on Nov 23^rd, 2008 at 2:35am:

wrote on Oct 27th, 2008 at 9:57pm: CRAP is right Im on my 160th week or there about I've got no advise just hang in there it will pass, I hope it passes sooner than later. Wishing you pf days and nights,   Phil 8-) Ha Ha Ha, I got you beat at 260 weeks [smiley=hammer.gif]

Hang in there Rolo,  stupid demon bastard has to go away some time.

What flow rate are you running on the oxygen Carl?
15 is the max on my regulator.  seems to do the trick all right.  I still need another mask.  It's been another adventure with Lifegas.

I can only hope I won't catch up with you guys.  I'm on 15 weeks and hoping it's done.  should be, from past experience.  Sure wish there was some way to bust that up for ya.
    How about a DOUBLE SECRET TRIPLE UNCRAP on ya.

                                    Hang in there
                                         JPC

Settled in to 3 craps a day now. sum-bitch
I have had it worse. Crap Crap Crap,  those are for tonight.
Kickin demon ass. YA!! ;)
the bb
260 weeks Rolo, you need a break. Uncrap on ya.

I'm still in the crap zone too. Night before last I was woke up 10 times to abort the crappy beast, the 02 did the job each time. I guess I can call that 10 un-craps. I did get some sleep last night after my big med that I avoid using every night so I just keep waiting for the cycle to end. Un-crap to the crap.

I really am hoping for an early Christmas present cause that's about as early as my cycle could end, but I'm prepared for whatever. I'll walk the walk & talk the talk until it's done.

Carl, I had a little delay with Lifegas on my 1st order with them. They got behind on the 3 liter bags in my case.

The best un-crap night to all,  Don

Sorry that everyone is having such a crappy time  :'( :'( :'(  Hang in there, I'm pulling for each and every one of you  :-*

Rolo - holy crap 260 weeks :'( :'( :'( :'( :'(

PF wishes to all of you!!!!!!

Love,

Jen

Thanks Jen,

Lithium and oxygen for breakfast, lunch, and dinner! That’s what’s on the menu.

Roland. :D

Hi Rolo  [smiley=wave.gif]

We have really got to get Phil on some Lithium.  He said something the last time we went to the neurologist, but that guy was such a butthole he didn't want to listen to anything that we had to say.  He goes to his GP next Thursday so maybe he will listen.  He's way more receptive to the things that we bring in to him.

Saying a great big huge uncrap for all of ya!!!!!!!!!!

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this should help

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This looks like the three apaco's eating tacos, er wearing em anyway [smiley=crackup.gif]

Why don't the pic show,  [smiley=damncomputer.gif] I fingered it out :D

OMG!!!!!!!!  That is too funny  [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]

Awsome Carl I like it,  now you know what to get me for christmas. ;D

  Thanks for the laugh,   Phil 8-)

flipperlips wrote on Nov 25^th, 2008 at 5:10pm:

OMG!!!!!!!!  That is too funny  [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]

Er, da wif didn't mary me for da ching so it had to be da sense of hummer..er..ah..ya ;D

One look at that guy on the left and I see why I have CH, that face triggers me. (don't worry it's me)

Jen, is Phil still going to see someone at U of M? My daughter saw Dr. Cooper that Phil had the appt with and says he is great. (headache expert, DO.), but I saw Dr. Cheng, PHD. Just in case you need it.

The Lithium just may help, from what I read here it is a big help for chronics. I take it as an episodic, and have daily for years. I think it reduced the amount of hits I get. I was chronic when I first became a CH'r so I do know what it's like although it was a long time ago.

Rolo, are you officially chronic? I feel for you brother, glad to hear you have the big O2, it really helps. It has given me some of my life back. OXYGEN is a real UN-CRAPPER!!!!    ,Don

Skyhawk5 wrote on Nov 25^th, 2008 at 5:43pm:

Rolo, are you officially chronic? I feel for you brother, glad to hear you have the big O2, it really helps. It has given me some of my life back. OXYGEN is a real UN-CRAPPER!!!!    ,Don

Almost daily for 5 yr's as I suck on the O2 brother! ;)

Add: I need a TBI (trigeminal-nerve borg implant) so I can share the pain with the rest of the HA doctors in the collective!

(((GDI, why do I keep on having connection problems on this site? I keep getting kicked out and having page load stalls. Dam old Netgear VPN FVS328 router or Comcast’s DNS servers I’ll bet. Frustrating?!/!)))

Ya, it was the dam router!!!!!!!!!!!!!!!!!!!!!!!! Time for a replacement… Oh well. [smiley=damncomputer.gif] :) :) :) :) :)

Uncrap on the chronic stuff.  I sure feel for you guys.  

How ya doin Don?  I've been PF for two days.  Sleepin like a baby. but not peeing the bed or shittin my pants.

Here's wishing you all a uncrap PF Thanksgiving

                                JPC

Just Plain Carl wrote on Nov 26^th, 2008 at 4:47pm:

Sleepin like a baby. but not peeing the bed or shittin my pants.                                 JPC

OMG, ROTFLMMFAO ;D ;D ;D ;D ;D

Happy Thanksgiving to all!!!!

WooHoo!!!!!   I'M UNCRAPPED!!!!!    
took the beer test yesterday, no demon.
slept all night, no demon
I'm done.

Wishin it on all of you.

                                       Uncrap On Ya
                                             JPC

Just Plain Carl wrote on Nov 28^th, 2008 at 7:44pm:

WooHoo!!!!!   I'M UNCRAPPED!!!!!     took the beer test yesterday, no demon. slept all night, no demon I'm done. Wishin it on all of you.                                        Uncrap On Ya                                              JPC

Good news man Im happy for you it must be the wooden shoes ;D,  time to get on with life and live it up.   I hope you stick around the site,  I'd miss your humor if you left us.
  Phil 8-)

Crap, crap, crappity crap for all the Clusterheads who are suffering!
Wish I had some magic potion, gang, but all I have, including lots of juju for you.spread all the way around!
Show the beast the door!!!
PF, all!
Cathi :o :o

Just Plain Carl wrote on Nov 28^th, 2008 at 7:44pm:

WooHoo!!!!!   I'M UNCRAPPED!!!!!     took the beer test yesterday, no demon. slept all night, no demon I'm done. Wishin it on all of you.                                        Uncrap On Ya                                              JPC

That's wonderful news.  I'm so happy for ya  [smiley=2vrolijk_08.gif]

Sorry so long in getting back. Doing about the same Carl, still holding my own though. Glad to hear you're coming out of it, we still need to meet up in the near future.

One night of wake up every hour the next night I take my shot and sleep like a baby. When this cycle finally breaks it will be so nice not to look to that needle for a good nights rest. Last night I had a dream of running out of O2 on my E-tank only to wake up to a hit and already be at Kip-7. Sucks.

I hope all of you have an un-crap night, Don

Crap X 10, DHE leg sore, and 3 am hit I had to swap tanks at K7, Pulled lower back.. Call wrecker please, stuck in ditch! >:(

Thanks y'all.

don't worry Phil I'll still be hangin around.  Gotta keep uncrappin you guys.

Hang in there Don, I'll be by for lunch one of these days.

Sounds like a shitty night Rollo.

                             Uncrap on all of you
                                       JPC

Just Plain Carl wrote on Nov 30^th, 2008 at 6:58pm:

Sounds like a shitty night Rollo.

Thanks Carl,

First shot of DHE at 4 pm didn’t do crap. I waited two hours and just did another shot.

Second shot helped my head but the leg is sending nasty grams. I hate those dam needles (23 gauge 1”) in the thigh musle.

I wish there was a better way to do it but that would mean going to the ER for a IV push and I just aint gona do that!

The DHE makes my lemon zinger tea taste like a crap zinger now!

Rolo, better now?

Roland:

Sorry for the rough night.  Thanks for the reminder to swap my tanks tonight, down to about 250 lbs in².  

Have you ever tried the DHE nasal spray, Migranol?  It works pretty well for me for occasional use.  I clogs the heck out of my nose for a while though.

Ray

Yea Ray, I tried both but its useless when the snot is running and it just washes out before getting absorbed.

The leg is dragging but the head is much better now. I shouldn’t wait so long to hit it but I just hate the needle. Its one thing to have someone else do the poking but the self infliction is a reluctant endeavor.

Cheers, Roland. :)

Roland, I use the DHE injections too, and just had to put some ice on my inject site. I usually don't have any problem though. My trick is quick with the needle in and slow with the med in and most times it doesn't hurt. I'm pretty new to it and that's how I was shown, and also to rub the area right after.

I tried the Migranal too, it was too slow for me and I found it was harder on my heart than the shots. I still have some here. It did help me sleep but just no good as an abort for me. The shot will abort a Kip-9 in 5 min. Although as dangerous a drug as it is, I don't reccomend it for everyone or anyone.

I've come to a point where I don't get much sleep unless I shoot the beast every other day or so. I don't get many daytime hits, but it loves to wake me all night long. I've tried melatonin etc., and I just wake too groogy to react quick enough. Crap to the crap.,  , Don

Yea Don, I do the same and make sure I don’t bottom out the needle in the ampoule so as to ("crap" that one is bleeding allot) dull the needle.  You know how sometimes it runs down to the knee? And the bad knee is a hurting so I had to hit the right twice in 2 hours….

It’s all good, I’m feeling better! I haven’t had to hit that “CRAP” for over 2 months now..... Just the dam shadows where killing me.. >:( I kept running for the O2 but it was constant shadow and the O2 wasn’t doing "crap" for it so I broke out the DHE and it took 2 shots, the first one did nothing!

PF’s Bro [smiley=thumb.gif]

Glad you're feeling a little better now, I had the same problem a couple weeks ago. It took 2 shots to take it away. I've got the Flotec setup too and it usually does the trick. What I found out in my case was I was taking calcium, magnesium, zinc and also using milk of magnesia for a poop problem. Well this was causing my DHE to not be as effective. As soon as I stopped I could sleep again.

I was about to lose it on the 3rd day of no sleep. All it took was to stop the magnesium! Of course I went back to being constipated for awhile. Prune juice, yeck...

I think I've hit a nerve with the needle a time or two, always seemed to show up when I got up. Tonight it puffed up a bit and got sore after, but I know I'm sleeping for sure. Best uncrap to ya brother, Don

Good point Don, I’ll have to check the paper print that comes in the box. There may be something there if you can find it in all that scientific jargon and tiny print. No warning from wall greens about it on my box. Add; there is a triptan warning. Magnesium didn’t seem to help so I quit that some yrs ago.

Thx, Rolo.. ;)

Rolo, This is not in the Rx info. The calcium, mag, zinc, supliment info says "do not take within 2 hours of medications as it may affect the absorbtion." The problem I had may be specific to me, I'm not sure. I was getting a mega dose of magnesium.

What we go through to fight this thing. I was taking the C,M,Z, to balance my PH and then my Neuro suggested the Milk of magnesia for the poop trouble and woops we have another problem. Now I'm afraid of both for good reason.

I'll figure out something or fight with O2 and the tools I have.             Best, Don

So I spent an hour calling Allina, Apria, and my nero. I have it all set up except for Allina wanting a stop order from the doc. I don’t understand why they need that when I am just switching suppliers? I guess I’ll have to call the neuro again to get them what they want so they can come pick up their equipment. I certainly don’t want to be charged extra rental fees for the yolk regulator and tank stand. Why can’t this be easier to do?


Rolo… ::)

So I spent an hour calling Allina, Apria, and my nero

What a pain in the ass.  I was gonna switch oxygen suppliers and didn't just for that reason.

I never did get my mask from Lifegas.  They had to have a fax with my signature on it.  Tried 3 times and gave up.  Hopefully I will never need it.

This is hard enough to deal handle without that kind of crap.

                                         Uncrap On Ya
                                               JPC

Good to hear you had an uncrap night Don! Rolo.. 8-)

Dam Don, your post dissapeared? Well uncrap ya anyway! ;)

Yeah Rolo, I got a little dopy so I deleted that one. I had another night of only one wake up and I'm still in shock about it. No shot just plain old sleep, I may be on the down side of my cycle finally. Still a way to go.

Carl, I ran into the same with Lifegas and they didn't let me know. If you have cable like me, I didn't use the email from the scanner and this was the problem. The scanner was cutting my name off. I had to experiment and send the document to myself until I got it right. Sucks.

The mask is great and comes with the mouthpiece that Rolo uses. I'd still get one. I did end up letting managment there know I was not happy. They could use some customer service.                    Best, Don

Yea Don, I posted and thought I was writing to myself after I posted! They (Allina) have to have it from the original doc so another call or two? Pf’s, got to run.. Roland.

Don,
 Much to my surprise, I recieved my mask from Lifegas today.  They still shipped it next day air.  Oh well, at least I have it.  Hope I never need it again.  Glad to hear you are doing much better.  Let me know when you are ready for the beer test.

Rollo,
  Hang in there man.  We got to UNCRAP this chronic thing for you and Phil.  Doin my voodoo thing for ya.

                                                        UNCRAP on all of ya
                                                                   JPC
       

Carl, I guess stranger things have happened. That mask will give you much faster abort times, next time you do need it. I'm sure you'll be glad you got it, I know I am. Give me a while longer on the beer test, my cycle comes down slowly so I have some time yet.

Roland, my apolgy for ripping that post out from under you, I thought I deleted it before anyone saw it. I just wasn't awake enough to be sure of what I was saying, so I took it down and went to sleep. Probably wasn't anything worth it, I'm not sure.                    Best, Don

Hi guys  [smiley=wave.gif]

JPC - I'm glad to hear that you're still doing great, I'm so happy for you!!!  And you're right we need to uncrap this chronic business for Phil and Rolo.

Don - sounds like things are looking up for you, YIPPPEEEEE!!!!!  I'm so glad that your finally getting some sleep.  I wish that Phil was  :'(

Rolo - keep hanging tough, we all got your back

Phil - well you already know how I feel about you since I'm married to ya  :-*

Great big huge uncrap!!!!!!

I forgot to tell you guys that Phil finally has an appointment set up at the U of M.  It's March 9th.  I wish it was sooner, but at least we have something set up.

flipperlips wrote on Dec 4^th, 2008 at 9:00am:

I forgot to tell you guys that Phil finally has an appointment set up at the U of M.  It's March 9th.  I wish it was sooner, but at least we have something set up.

WTF Jen? Why soo far out? See if you can get him on the cancel list! Phil just may get lucky and get in quick. I have done it a few times and made it in less than a month..Rolo. >:(

:-*

Good advice.  Why didn't I think about that?  Geez, I'm an airhead sometimes  :D

 Thanks for thinkin of me guys and that Flipper chick too :-*.  March is a ways away but I have seen so many doctors that it makes me sick I usually end up pissed off and depressed after my doctors appointments anyway,  but I will be trying to get on there cancellation list.
 Don as of now its March 9 so you think your up for meeting for lunch?
Carl if you could make it that would be great,  Rolo well you are welcome to join but it would be a long drive to meet for lunch.
 Well guys Im glad to hear things are uncrappin for you,  and Rolo hang in there buddy.
  Im off to my GP now,    Phil 8-)

Yea Phil, I upped my lith to 600 the last few days after the DHE breakdown. I have been pretty good the last few days other than a stubborn one last night that took 30 min on O2 but only hit K6. It's funny when you are thankful for just a K6?? ;)

LYG… Rolo. [smiley=hug.gif]

Yep,  got March 9th marked on my calendar.
Let me know if you get in earlier.
               JPC

wrote on Dec 4^th, 2008 at 9:55am:

Yea Phil, I upped my lith to 600 the last few days after the DHE breakdown. I have been pretty good the last few days other than a stubborn one last night that took 30 min on O2 but only hit K6. It's funny when you are thankful for just a K6?? ;) LYG… Rolo. [smiley=hug.gif]

  Just got back from my GP,  he didn't change anything witch I didn't think he would.  I am kinda trying to detox off some of my meds so I didn't want to start any thing else right now.  I havn't used any abortives except energy drinks in three + weeks,  it was tough the first few days but after that its been ok,  most hits dont get above a k6 and only are lasting 45min-1 hour.   I was taking 6+ Imi injections a day and WOW I was on the fast track to a stroke :o my eyes were about to pop out of my skull and I went 48 hours with a half hour of sleep thats when I decided to just take the pain for awhile.

 Anyway WHoaWHoooo..... Im going to meet the famous JPC.

Hang in there Rolo I am sure I will start Lithium again in March if not sooner.

  PFDANs to all!!!!   Phil 8-)

Phil, If we get Jen to call and tell them whats going on with you, I'm sure they will up your appt. Also my daughter works at the Hospital and see's Dr. Cooper herself and will email him with your story, if you want.

Losing sleep like that makes me a basket case, I'm bad enough with only 24 hours but 48 and I'm ready for the nut house. I really feel for you brother, very heavy duty crap, besides the pain.

I am ready for lunch anytime, maybe Carl can meet at my place to save him some driving and I'm easy to find from Royal Oak.?

And the crap fight continues,   Don

Crap on , Crap on. Oh crap. ow,ow,ow crap START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Battle on gents.
the bb

I am ready for lunch anytime, maybe Carl can meet at my place to save him some driving and I'm easy to find from Royal Oak

No problem.  I can swing by and pick you up.  I don't mind driving.


BB   that's a big ole crap

                                  Uncrap On You All
                                               JPC

I started up again every 2 hours at 1 am last night. Not bad ones mind you, just alarm clock accurate …1-3-5-7-am and 1-3-5-7-9-pm… I am expecting my friend will want to talk again tonight… I’m in this dam 3 day cycle of two day crap, and 1 recovery…

I really hope ya get some sleep Phil, I’m with Don on this, no sleep makes jack a very ornery and unhappy boy!!.... PF’s….Roland.

[smiley=bomb.gif] [smiley=hammer.gif] [smiley=sleep.gif]

Skyhawk5 wrote on Dec 4^th, 2008 at 5:49pm:

Phil, If we get Jen to call and tell them whats going on with you, I'm sure they will up your appt. Also my daughter works at the Hospital and see's Dr. Cooper herself and will email him with your story, if you want. Losing sleep like that makes me a basket case, I'm bad enough with only 24 hours but 48 and I'm ready for the nut house. I really feel for you brother, very heavy duty crap, besides the pain.

 As of right now my appointment is Mar 9 @9:00am with Dr. Cooper and if your daughter could do anything to get me in sooner that would be awesome.  I have an MRI tomorrow @ 11:00 and plan on calling U of M after that.
 Phil 8-)

Phil, still have Jen call too but I will have Liz send him and email with your story, I think I know enough of it to get the point to him. I'll send you a PM when I find out more.

Uncrap to all you guys. I didn't get much sleep lastnight, the beast kept knocking every hour until I gave him a shot @ 4:30am  so I got maybe 4 hours sleep. Crap. Think I caught that from Roland, or BB, or Phil or JPC started it all, or maybe Flipperlips, nah, not her.

Saw my Neuro today, he thinks my cycle is starting to end. Very Slowly.. Me too.  Uncraping whenever we can..    Good Night to All, Don

Sure blame me  :)

Sorry to hear that you guys are having a hard time.  I know the sleep thing is a giant crap.

I sure hope you are at the end of this cycle Don.  Sounds like you are

                                     A BIG UNCRAP ON YA'LL
                                               JPC

Yeah Carl, the rotten beast has getting his walking papers, it's just making him leave all the way. It's always slow for me, like trying to get money back from my sister. (over 2 years ha, and now it's X-mas)

I've been doing a little better but still fighting. This morning was a wake up every 2 hours instead of every one. Better. Tonight is take a shot and sleep good night. I will soon just battle it out with the O2 for at least 2 nights straight, as I did have 2 nights with few wake ups. It just takes a little guts I guess.

Phil, We have our fingers crossed, and waiting for Liz's response. Let me know if you get the call. Praying you get some rest, hang in there.

Best to All, Don

Gee I need to get a yolk adapter… I have three E’s to empty and the yolk regulator only goes to 15 LPM… That’s like tiring to drive my truck to Chicago on 10 gallons!! Rolo… :D

Hi guys  [smiley=wave.gif]

I hope that everyone is doing well, if not here's some smoochies for ya  :-* :-* :-*

Phil's hanging in there.  He's not getting much sleep, which isn't anything new.  I thought for a minute there last night that he was maybe going to get a good nights sleep.  We went to bed and within 5 minutes he was snoring right in my ear  :D  Well, of course, that didn't last but maybe 3 hours.

I'm going to call the U of M tomorrow to see if we can get his appointment moved up.  He needs (and I need for him) some relief.

PF wishes to all of the sufferers here in Clusterville.

Hi Jen,

    I sure hope you can get that UofM appointment moved up.

I'm still doin fine.  Wishin that on all the rest of you guys.

                                         UNCRAP on Ya

                                                 JPC

O2-Apria update,

I was on the phone for another hour today playing ping pong between Apria and Cigna… We finally had a conference call to get it right I hope. Dam picky these O2 suppliers are, that’s why I have resisted the switch so long. With the NP on the phone I requested a new NR mask W/mouth tube, 5 M’s, 2E’s, M stand, and 15 maybe 25 LPM yolk reg.

Now, I’ll have to see what I actually get… ::)

Hello all, Phil, Don, Carl, and of course Jen!  :D

Roland.  [smiley=vrolijk_26.gif]

Showing signs of improvement here. Haven't had to take a shot in 5 days now, and the wake ups are getting farther apart. Not over yet though, but we'll take it as it comes. Been sleeping too much, catching up.

Jen & Phil, got the fingers crossed, I know if you ask to be put on the cancellation list and that the appt is for CH it will be speeded up, so my daughter says. Let me know once you've called too.

Roland, I hope you get what you've asked for from Apria. I'm not sure if they have it all, I know they have the O2. Good Luck!

Carl, I'm getting there. Soon my man. Best, Don

A great big huge crap!!!!

Phil had such a rotten day yesterday.  Oh, how I wish I could just kiss it and make it better  :'(  When I was driving to work last night I had tears in my eyes the whole way.  Why oh why can't he just catch a break even for a day?

I called the U of M.  The person I talked to was kind of an idiot.  She didn't seem to understand what I was asking.  I'm going to try to call again tomorrow.  I'm just so tired today and I have a feeling when I finally make it to bed that I will crash and burn.

I am so sorry to hear that Jen! A ginormus hug for ya and a man hug for Phil.

I wonder if he can get the GP to get him rolling on some lithium. This dam CH can tear you down like Katrina going through a shanty town.

Best to you and Phil!!! Roland. [smiley=hug.gif]

Big Ole Crap Jen,

I sure wish Phil could get some relief soon.

You would think UofM would put someone in mega pain at the top of their list.

Keep holdin Phil's hand or whatever you need to hold

                                                        UNCRAP On Ya
                                                              JPC

Here's a big ole crap for Phil. One for me. Not quit so big.
I need an overhaul.
all the best to the crappers and uncrappers
the bb

UNCRAP on you too bb
         JPC

JFC- This Apria guy is a moron!!! The office was supposed to call me before they sent someone out. He comes at 9 pm with no warning, aint got a pen, and wants me to help him carry it all in! They sent out 5 tank stands, one for each M tank, and I did not get the 25 LPM yolk reg… The masks are cheep and no mouth tube (I'm sending that crap back). Then he makes a remark that I took to mean “I hope your mom needed this tonight” he went out of his way to deliver it tonight.

PO’ed – Roland. >:(

What a butt munch!!!!!  Sounds like somebody needed an attitude adjustment  ;D

So, I really pissed right now.  You know how I called to see if Phil's appt could get moved up?  We got a letter in the mail today saying that his appt has be changed to April 7.  WTF!!!!!!!!!!!!!!!!!  [smiley=wtf.gif] [smiley=furious.gif]  I'm so going to call every fricken day until that appt gets moved up.  

Hoping everyone is having an uncraptastic day  :-*

That's some shit news Jen.  What's with those dumb asses?
Maybe if we all started calling they might get the message.  Just a thought.
Any way to get Phil's GP to help?
Bunch of CRAP!!!!!


Rolo, that's quite an adventure with your oxygen.  I guess we all have some morons to deal with.
Have you got some other masks to use?

Crap on UofM         Crap on Apria

                                            Uncrap On Ya
                                                  JPC

Yep, JPC that is some real shit.  It just makes me sick to my stomach  [smiley=hurl.gif]   I'm going to call on Monday and plead his case again.  I'm not going to stop until we get him in there sooner.

Yea Carl, I have an original cluster mask with mouth tube and because Apria wasnt supposed to come untill I called I have 7 full M's and 6 tank stands... What a load of $hit.....

LYG, Rolo. ;D

Jen, I'm so sorry to hear the delay on the appt. Liz told me this Doctor is overloaded. He's young and good looking, (his picture is on U of M Neurology site) thus every young lady with headaches wants to see him.

I think if you request to see Dr. Cheng, the guy I saw, who actually has a higher education (PHD), Phil can get in quicker. I can call myself too, cause Dr. Cheng told me if I had any problems to call the office and he would call me back. This is the Doc that took my blood pressure himself.

If Phil wants to stay with Dr. Cooper you may have to tell them he is getting phsycotic or something like that, or forgive me the 's' word.

I really thought my daughter could speed things up, but I guess I was wrong, and for that I apologize, but we'll do what we can do., Don

No apologies necessary Don.  We really appreciate all that you guys have done for us.  Thank you for that from the bottom of my heart.  This is what this place is all about, family helping family.  You know if there's ever anything we can do for you, we're a phone call away.  I'm going to call on Monday and see what I can get done.  

So the doc is young and good looking, huh?  Hell maybe I want to see him, LOL!!!!!!!

Horrible night I had, got maybe 3 hours sleep. Long hits, intractable with O2 every two hours from 1 am to 1 pm. My left eye feels like it’s been rubbing on a dam cheese grater. I had shadows all day @ K4 with 7 pm start up again tonight. If I get one more hit I going for the DHE. Arrgggggggggg… Ok, enough whining… I love this thread! I’ll call you tomorrow and let you know what’s up Phil, hang in there… LYG, Roland.

Rolo I'm so sorry that you're having such a bad day :'( :'( :'(

Must be something in the air, because Phil had a real crap day today too.

Give er hell Rolo!!!!! and that ain't no crap. This is some crap we have.
all the best
the bb

Roland, sorry to hear the beast knocking on your door. Kick his butt. I woke up to the stomach bug today and have been crapped out by that all day, a few shadows. Just yucky..

Hope you beat the beast down,  Don

Way too much CRAP going on here.
Need some relief for all of you

bb, are you chronic also?

Hey Rolo, got any extra M tank stands?  ;)  
that no sleep crap really wears on ya.   Beat that mutha down and get some zzzz's

                                     UNCRAP on Ya
                                           JPC

 Hi guys been awhile figured I'd say Hi,  and its all a bunch of crap ;D.
You guys hang in there and thanks for the calls Rolo.
  Phil 8-)

Been missing you Phil. We got to get you feeling better brother. Keep up the good fight, you're in our hearts.    , Don

ZOMG!!1! Craptacular day today.

Hard, stressful work day. Relax and Bam hit k-7. Father-in-law in hospital very touch and go. Hit again. Wife at hospital with her Mom. Kiddo sleeping soundly unawares. Puppy chewing everything in sight. Hit again. Find out Father is in hospital with CAD related issues and blockage. Hit again while on phone with my Mom.

No way I'll be able to work in the morning. Father-in-law's second surgery in 6 hours is starting now. Wife went back to hospital @ 1am. I sit here waiting for the next hit. BTW I am 1 month and 14 days away from being my first year as chronic. I really hate crap!

Carl, I have had no prob's with Apria. I was their first CH customer here in west Texas. They were more than willing to get me anything I needed. Doesn't hurt that I am only 4 blocks from their building.

Crappy crap,
Eric

Carl, you might try getting your own regulator from e-bay and your own mask (click on Oxygen info on the left). Then all they'll have to bring you is O2. That's what I've been doing for years. They don't argue with me when I call. Usually here within a couple of hours.

Sorry you guys are having so much crap going on. Guess it's just the season.

Wishing everyone a PF holiday season.

Hugs BD

Hi Barb,

     thanks for the info, but I'm good to go.  Got my mask from Lifegas after several faxes and phone calls.

Still in the box, my cycle quit just befor I got it.  Hope I never have to use it.

                              Happy Uncrapmas
                                     JPC

Hi guys  [smiley=wave.gif]

Eric I'm sorry to hear that you're having such a crappy time.  I hope you get some relief soon.  Being chronic blows, my hubby has been chronic for about 3 1/2 years now.  Stay after it and I hope that you find something that works for you soon  :-*

Keep us posted on your father in law.  I'll be keeping your family in my prayers.

JPC - are ya still PF
Don, Rolo, bbz - how you guys doing?

Hiya Jen,

Yeah, I'm still livin large.  I wish I could spread that around to the rest of you.  I'd even take a hit here and there if it was possible.   what's the latest from UofM?
   

Damn Eric,
       You reallly need a break in the action.  Hope things have settled down for ya.

Don,
    Can ya taste that beer yet?

                                        UNCRAP on Ya
                                             JPC

Hey Carl,
I'm episodic. Crap. Hope all you all are doing better. I hope this crap goes away. I have gotten something of a reprieve lately due to some rather large doses of shrooms. Still getting crap at night.They did not abort the episode this time as they have done in the past. I remain optimisitic and hope my wall holds up to the bangin. I need a pad like Linda has.
Give the demon bastard the hell it deserves...I am.
all the best to all the best
the bb

Hanging in there. Been having trouble with my sleeping still, not so many hits just can't stay asleep. I end up staying in bed late, until sometimes 3:00pm. Bad.

This is all part of me coming out of cycle, the hits are still happening just farther apart. It's almost 4am now and I'm beat but had to say hey. Gotta go try to sleep, hope all you guys are getting some too.       , Don      There's a beer somewhere down the road.

Here's a crap for ya Don.....CRAP 8-)
the bb

I thought crap was what Americans did in a casino?

Never will speak your language

pubgirl wrote on Dec 18^th, 2008 at 7:14pm:

I thought crap was what Americans did in a casino? Never will speak your language

That would be "craps". They allow Brits to play it too.  ;D

I'd be crap

Thanks bb, and a nice CRAP that was, made me laugh. Hope your CRAP is UNCRAPPING I know you need a break.

Jen, any luck with the U ?? Phil could get in to see my Doc if he would want. He could put him in the Chelsea Headpain inpatient Hosp. if needed. Just an idea. Anything to uncrap him.

JPC, keep it cold, I may need one after this big storm, getting a little better each day..

Rolo, did you get Apria straightened out? Chain those tanks up eh? Sounds like a project. No Crap to you.

Pubgirl, I think you got it. Crap means something more like $hit actually, over here and especially on this thread.

The night shift signing off, Don

Sorry guys, I need to use a little stronger word.....

Damn, Damn, Damn   >:( >:( >:(

I just got off the phone again with the U of M.  I told the lady about Phil and what he's been going through and how he hasn't had any PF time in 3 1/2 years.  She listened to my story and asked me some questions.  I told her that we don't necessarily need to see Dr. Cooper that we would see Dr. Cheng.  She told me that they don't have a cancellation list and that she couldn't change his appointment because he's a new patient.  WTF, he's not important because he's a new patient.  You would think that they would want to help us because he is a new patient.  She finally told me that I have to talk to some lady named Sandy.

So I get Sandy's voicemail and her message says that she's out of the office from Dec. 19th through the 30th.  So I leave a message telling her Phil's story and that I really hoped she could help us out.  So I hope that we get something figured out when she gets back.  

I so flipping pissed right now I could spit nails.  At least this time when I called I feel like I got further than the last time.  Why didn't they have me talk to this Sandy person when I've called before.? Then I could've actually talked to her and not have to wait 2 flipping weeks to hear back.

JPC - glad your still uncrapping
bbz & Don - it's gotta be over soon CRAP, CRAP, CRAP
Eric - how's everything going for you?

Smoochies  :-*

F....N Snow  !!!!!!
Hey Jen or Phil. Check your answering machine at home and give me a call.
I've got someone else that may be able to help at UofM.
It's a shot in the dark but worth a try.

                      Uncrap on all of ya
                            JPC

Well crap Jen. That's worth a good ole shitfire and applebutter. Primo donno's all of em.
all the best headbangers
the bb

F..n snow is right.  We got like two feet of snow I swear it  >:(  At least things have calmed down for the drive into work tonight.  This morning I was scared shitless.  

Thanks for the call today JPC.  We really appreciate it.

bbz - yep a shitfire and applebutter for sure, when I said damn, damn, damn, I was actually think much worse words  ;D

I figured this would be the first thread Gary'd be drawn to.  Go figure.  But he's been headbanging pretty much all afternoon and is still at it, so I just wanted to say this crap is really crappy.

Jen - hope Sandy gets back and uncraps this situation!

Don, Eric, Phil, BBZ - uncrappy thoughts headed your way.  !!  JPC - like Jen, I hope things remain uncrappy.  

CRAP.  AND CRAPPY CRAPPITY CRAP.

Laurie

This is the place Laurie we have been coming to vent in partial obscurity. It's nice to vent without all the hoopla going with it... nice to see ya here Gary!

Roland. 8-)

 Yep I am offically sick of this f-ing crap I cant seem to shut my eyes with out getting hit without a large dose of sleeping pills and I dont really consider that sleep its just some down time, because I still wake up in 3-4 hour more tired than I was before I slept.  OK enough whining for me all of you kick a$$ and I wish you the best.
   
  JPC-  thanks for the help,  it means allot to me.

  Don-  your awsome and I will call you tomorrow.

  Laurie- your a sweat heart.

  Gary- get your a$$ on this board thats an order.  j/k but please stand at parade rest when you respond to me.  lol

  bbz-  hit those shrooms a little harder,  somethings got to work.

   Everybody else keep on keepin' on

          Phil 8-)

Oh yeh that flipper chick I think I love you :-*

Thanks for the vote of confidence Phil, I’ll just go to my corner now… Rolo… :-X :D 8-)

PS; if not Sat, Mon for sure... ;)

wrote on Dec 20^th, 2008 at 1:04am:

Thanks for the vote of confidence Phil, I’ll just go to my corner now… Rolo… :-X :D 8-) PS; if not Sat, Mon for sure... ;)

 Sorry Rolo I thought that I thanked you first,  but I totally missed you I am so sorry I recieved the christmas gift today(well yesterday now) please forgive me my brain is mush. :-[

All cool bro, hope it helps... :)

Phil, Liz spoke to Dr. Cooper personally Friday and he agreed that your appt must be moved up, saying he wants to see you  soon in Jan. I know that's still a long time to wait, but the kid has his attention now so who knows.

Does anyone else crave chocolate when they really shouldn't have it? I would so like some right now. I'd rather not get slammed though

Laurie, tell Gary I sent him some UNCRAP vibes and he can come here with whatever CRAP to unload it, especially CH CRAP.

A Peaceful Night to All, Don

January isn't that long to wait that's only a week and half away  ;)

Thanks for all the support everybody.

I love you all, you're the best  [smiley=heart.gif]

Hugs and Kisses all around  :-* [smiley=hug.gif]

And of course, a great big huge UNCRAP!!!!!!!

January isn't that long to wait that's only a week and half away  
    Man I hope that happens.

We have to get Gary on board to help with the business of uncrapping.  

A big UNCRAP on all of ya.

                               Merry Uncrapmas
                                      JPC

Merry Uncrapmas  [smiley=spit.gif] [smiley=crackup.gif]  Now that's funny.  I needed a good laugh  ;D

Come on in Gary, the water's fine.

We've had our first crappity. CRAP, CRAP,CRAP. That was for last night.
I hate is crappity crap.
the bb

Gary's eyes aren't uncrossed enough to wade in.  Looked like he was on earlier but that was me.  He hadn't logged out and I didn't realize it.

BB - CRAP.  Maybe a mix of seeds and mushies?

Phil, Jen / Don (Liz) - GOT MY FINGERS CROSSED it happens!  Even better if you don't have to wait for Sandy to uncrap the situation!!!!

Don - bummer chocolate's a trigger.  Isn't for Gary.  But like Rolo, he always seems to get the crappy one.  

Rolo - hope the zyprexa is still uncrapping the situation.

Gary hit a crappy record yesterday.  TWO fever episodes, both over 104.  As I type he's at 104.8.  He refused to take it at the peak because he was headbanging as well.  But at least it's on the way back down.  But that's just crappy.   :'(  Like the CH isn't bad enough.

As always, a big UNCRAP to all of you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

(And JPC, thanks for the laugh!  Merry "uncrapmas" to you too!  ;D )

Laurie

Laurie,

Third day on zyprexa and third day attack free, I've had a few tiny starts that went away in 10 min without the O2. I am happy with the results so far and no reactions at all. I have been taking it at bed time and sleep like a rock.

Hope you all are well, I've been geting things done around the house and fixed the fuel pump in Jeanne's mini-van. That was the first in the tank pump I have done and it weren't no fun...

PF's to all you guys,

Roland. :)

Add; I drank 4 beers tonight and nothing! [smiley=beer.gif]

Hang in there Gary and Laurie, here's a big ole CRAP for ya!!!!

Rolo I'm glad you got the wife's van fixed.  I'm even gladder about the beers  [smiley=beer.gif]

Add; I drank 4 beers tonight and nothing!  
Way to go Rolo.   If you were closer I would come and have one with ya.  Maybe this summer.

BB, you need a double secret special uncrap,   sounds like Gary needs one too.
I know Phil needs one.

Have ya had the beer test yet Don?

          Uncrap on Ya'll
                 JPC

Just Plain Carl wrote on Oct 18^th, 2008 at 7:19am:

so much for melatonin slept from 10:00pm to 11:15   up with k6-k7 for 30 min slept from 12:30am to 4:00     up with k2-k3 for 15 min slept from 5:30am to 6:45       up with k7-k8 for 30 min

How odd!! Those are almost my EXACT times as well.  The 4 and 630 just kill  me with the lack of a good rem cycle.  feels like i just get my eyes closed and boom, they are open again.  the 630 is the most powerful of all of them for sure for me as well.  I sometimes get a random 2am thrown in there with no apparent pattern.

Hi bsic,
    My whole cycle was similar to that.  Mostly all night hits.  The no sleep crap really wears on ya.
                                     Uncrap on Ya
                                            JPC

Hi bsic sounds like you need an uncrap.  So uncrap on this crap already  ;)

I'm with ya JPC - a double secret special uncrap is needed here

The wierd thing is that over the last 3 weeks or so of this cycle, when i reach the "cracking" point where I feel like im going to have a breakdown from lack of sleep, depression, etc... I get one solid night with no visits.  My hopes rise, my energy is restored, only to get three (or four) visits the next night.  Almost like the beast is teasing me.  This has happened 3 times in the last 3 weeks or so.  *shrug*  Ill just throw an uncrap on it and be done with it ;)

Rolo - YOU FOUND THE GOOD CHOCOLATE!  (Knock wood, I don't want to jinx it).  4 Beers?????????  Holy uncrap!!!!!!!!!!!!!!

A big UNCRAP to all!

Laurie

Garys_Girl wrote on Dec 21^st, 2008 at 1:51pm:

Rolo - YOU FOUND THE GOOD CHOCOLATE! Laurie

Only time will tell Laurie... All that snow blowing in the wind last night has left me with some really chapped lips.  :-*, oww  :-*, Oww... :D

Got a break going here..one ,only one today...heee.heee.heeee and slept all night.  [smiley=bath.gif]No seeds just shrooms.
Total uncrap for a change. Finally.
Fuckeneh..uncrapola [smiley=2vrolijk_08.gif]
the bb
Stay away demon bastard

wrote on Dec 21^st, 2008 at 7:41pm:

stay away demon bastard

[smiley=bigguns.gif] [smiley=headbanger.gif] [smiley=bigguns.gif]

Hey Phil, any improvement so far? Just wondering...

Add; great news Thebb's. 8-) Jen, no call from her this morning so I guess the fix took! 8-)

Roland. ;)

Been getting 2 PF nights in a row off & on, I still have a hard time sleeping though. I think the habit of waking to pain is hard to get over. It's like this is unusual.

I haven't been on here lately cause my Father is in the Hospital. He started getting ill on Friday and my brother (that lives with him) called 911 Sunday.

He had low blood sugar of '40 and the ER Dr. said renal failure. He's doing better as of Monday but is being kept for more testing etc. He should be released for Christmas, we're told.

bsic, just a few short weeks ago I was just like you only every night. Hang in there brother. Are you keeping the hits well controlled with the O2? I got a 25lpm reg. and the O2pti mask and they are a big help. Also Hyperventilate... If not needed sorry.

Carl, no beer test yet, Roland did it for me. bb good to see you getting some PF time.

Laurie, I did sneek a little chocolate in a couple cookies and got away with it!! Good sign! I had 2 weeks ago and paid the price.

A PF Night to one and all, Don

Sorry to hear about your dad Don.

Good to hear you getting better as far as hits go! I hope Phil is too!!!

I'll drink a brew for you and wish ya the best, all yous guys!!!

Roland. :(

Don,  hope you get your Dad home for Christmas

I'm with Rolo, I'll be drinkin a beer or three to toast all of you guys

Wishin a PF UNCRAP Holiday to you all

                        Merry Uncrapmas
                               JPC

PS   Don't forget to wear your foil hats on News Years Eve        Uncrap, Uncrap, Uncrap

Don, so sorry to hear about your dad.  He'll be in my prayers and I'm sending a big heap of positive light/healing vibes his way right now.  In fact, I'll light a candle for him when I sign off.  Hope he's able to join you all at home for Christmas!   [smiley=heart.gif]

Totally UNCRAPPY news on the few pain free nights! ...though CRAP on not sleeping well.  And NO CRAP in those cookies!   ;D

Rolo - sounds from your other thread like you could use a special UNCRAP!

Phil - how you doing?

And to steal the FABULOUS line....

A Merry Uncrapmas to All!

Laurie

Don how is your dad?  I'm glad you've been getting some PF nights, now if you could just sleep.....

Phil's hanging tough.  He's had a few rough days with getting hit and looking after me while I've been sick.  He's a keeper, I love that guy.

Keep hanging in there everybody, sending special prayers to everyone.

JPC - I have to work New Year's Eve.  I won't even be home to kiss my sweetie.  I don't think I better wear my tin foil hat at work, but I'll have it on in spirit

Thanks everone for the concern about my Father. Well he's not getting out for Christmas. He has an infection of the colon that is "highly contagious" so he must stay until clear. It is life threatening if not treated.

Jen, sorry to hear your not feeling well. Get well soon. Phil too.

Carl, Roland,  have one of those beers for me. I'm not quite ready yet.

Laurie, give Gary my best. I have been eating those choc chip cookies, just not too many.

HAPPY HOLIDAYS TO ONE AND ALL

It figures, Christmas dinner and I'm stuck to the tank... F**K!!!

I just had to let that out. Hope it's better for you guys!

Roland. [smiley=hammer.gif]

Rolo, I sent a special UNCRAP last post.  Sorry it didn't take.   >:(

Another UNCRAP headed your way.

Laurie

Garys_Girl wrote on Dec 24^th, 2008 at 8:38pm:

Rolo, I sent a special UNCRAP last post.  Sorry it didn't take.   >:( Another UNCRAP headed your way. Don, sorry to hear your dad won't be home for Christmas.   [smiley=hug.gif] Jen - YOU GET BETTER!  Phil - you're a good man.  Hang in there! JPC and the BBZ - hope it continues to be smooth sailing! Laurie

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good one Paige! [smiley=crackup.gif]

Here's hoping all you "crap-heads" and "uncrap-heads" had a PF Christmas!!! I did not...

Rolo. :D

wrote on Dec 25^th, 2008 at 7:19pm:

Good one Paige! [smiley=crackup.gif] Here's hoping all you "crap-heads" and "uncrap-heads" had a PF Christmas!!! I did not... Rolo. :D

 I didn't either! :(  
 Merry uncrapmas too all and a uncrappy new year!

Sorry to hear you guys having a crappy Christmas. Although I was near pain free, right after a wonderful Christmas meal with my wife, Daughter and her boyfriend, I got a phone call.

It was my mentally challenged brother saying " I need your help, Dad's car has a flat." He lives with my Father. I said, put the spare on. " I can't get the tire out of the trunk." Unbelievable the guy is 50 years old. So I say give me a few to put my suit on and I'll be there. It's 14* out.

I get there and have to beat the large wing nut off the device holding the tire down, easy enough. But now the doughnut tire is actually frozen to the bottom of the trunk, and I have no tool to pry it out. 1/2 hour later we get it out. Then the jack won't fit under, so I go get my floor jack.

OK almost there, now there's one lug nut that is an antitheft device that you need a special adaptor to get it off and my Dad is great for moving things around so we couldn't find it. 20 minutes later we find it. So a half hour tire change took just under 2 hours. CRAP, CRAP, CRAP, CRAP, CRAP, CRAP.      , Don

Hey Don,

I'm glad you got er fixed. My sister-in-law is a pretty dim bulb like that also.

A friend of mine had the same experience with the lug lock. I asked him why he didn’t keep the key in the glove box and he said that he didn’t want anyone to be able to break the window and get the lug key! I replied a lot of good that way of thinking will do you on the expressway with a flat…

Roland. ::)

Thanks Roland, it just gets to me when my brother really is physically capable of doing something like that himself but mentally he's not.

He did go to special ed. until he dropped out in 9th grade. He has always been babied by my parents so he never learned to handle anything.

All that being out in the cold and bending over did bring on some shadows for me but the O2 took care of that quick. So I had new tires put on Dads car today and that's no longer a worry.

PF wishes to all of you,  Don

Glad you got that taken care of Don.

Rolo - how you doing today?

bbz - haven't heard from you in a few days, you doing okay?

Don & JPC - you guys both still doing good?

Laurie & Gary - how you guys doing?

Well, it appears that Phil now has the flu, too.  Good grief, the guy cannot catch a break.  I still feel like shit and my stomach is still flip floping.  One of units at work is in lock down due to the flu.  I knew I got if from there.  Damn work  :P

I'm better Jen, I started a solumedrol taper today so the HA's will be gone for a week but the roid rage and eating frenzy to start already...

Thanks for your concern sweetie. :-*

Hope all you crapper's are un-crapped today! :) And good #'s for Phil :-X

Roland. ;)

wrote on Dec 26^th, 2008 at 9:02pm:

I started a solumedrol taper today so the HA's will be gone for a week but the roid rage and eating frenzy to start already... Roland. ;)

Quick somebody lock up the food  ;D

You know I'm kidding  ;)  At least you'll get a break for a week, my fingers are crossed.

Man, I wish that things were uncrapped here.  The beast just won't let go of Phil's head.

Just like the last time I did a roid taper, It aint doing $hit for my CH...

I cant sleep for nothing ether. AARRGGGGG!!!

Rolo. [smiley=hammer.gif]

Holy Crap!!!!!

    Sorry to hear some of ya couldn't escape the beast for Christmas.  Thats CRAP.

Hey Don,  I had visuals of you being a tire changer at a Nascar race.  Wasn't pretty.

Hope you all get some relief soon.

                            Happy Uncrap Year

                                  JPC

I'm kinda freakin out here man!!!! :o [smiley=shore.gif]I went 4 days with nothing more than a shadow. Best Christmas present I could ever get. I did have a light one last night but it was easy to abort. 02 baby. Holy uncrap to all and to all an uncrappy night. Yes I am thanking the shrooms.
Hope this holds. Hope the kitchen cabinets make it through the pred taper your doing.  :DI hate it for you guys.
all the best
the bb

Great news bbz  [smiley=2vrolijk_08.gif]

Rolo have you eaten yourself out of house and home yet  ;)  Seriously are you feeling any better?

You know, bb, all my college days in this town you couldn't throw a stick without hittin' a bag of shrooms...then wouldn't ya know it, when I have a MEDICAL REASON to take 'em, I can't find jack squat!  :D


....then I'm at a party, after i (finally) got my hands on some the weekend before, and I'm telling the guy next to me about the ordeal of CH and how a "cure" for it is mushrooms and I look down and-seriously- there's a FRIGGIN' SHROOM ON THE GROUND AT MY FEET!!!  ;D ;D ;D
Turns out it fell out of the pocket of the guy on the other side of me!!!
*sigh* good times.

I do a stuffed mushroom that's perfect with steak and so easily done on the barbeque, but I'm guessing this isn't the right place to talk about it.

Brian, that made my head feel better just reading that. LOL. But now I have to go to Outback Steakhouse to satisfy the craving you started.

Did a chocolate test yesterday and it was a failure, it caused shadows all evening. I can have small amounts in like a couple cookies and it doesn't bother me. A chocolate bar is too much.

After eating the chocolate we went to the Casino (MGM) in Detroit, 30 miles from home. That is when the shadows began, K-2-3. These were handled by my breathing techniqe and half a pill from the wife and O2.

Carl, an old Clusterhead like me would put that Nascar tire on backwards trying to be that fast!!

Roland, what mgs do they have you on?

You are not forgotten, Don

Skyhawk5 wrote on Dec 29^th, 2008 at 3:57am:

Roland, what mgs do they have you on?

Methylprednisolone, 4 mg pill. Taper from 6-1 in 6 days.. It’s for my neck and it aint helping my neck or my CH. I quit doing pred tapers 2 yrs ago because they don’t do $hit for the CH no more. The roid rage and the not being able to sleep on top of it is very frustrating to sayyyyy the least. Especially with no relief, I’m doing it to satisfy the Nero, and do what I have to so he will do my disability paperwork…

PFT to all...

Roland.

Thats such a low dose, it wont touch the CH. But your neck will be better. holy uncrap to all
the bb ;)

We do what we have to do, that is for sure. I haven't had a drink in about 5 months now and I am so ready to fall off the wagon. But..

Phil, I hope the letter comes from Dr. Coopers office soon.

Lauie, is Gary feeling any better? Hope so.

All you guys hang in there, Don

Wishing everyone a pf Happy Uncrappy New Year!

Beth :)

How ya'll doin???

Still uncrapped here.    

Did you have that beer yet Don?

                            Uncrap On Ya
                                  JPC

Wow - way too much crap going on

JPC - GLAD to hear things continue to go well!!!!!!!!!!!!!!!!

bbz - good to hear!

Don - bummer on the chocolate test!

Radar - GREAT news on the shrooms!   ;D

Jen, Phil - damn you deserve a break!

Rolo - a big UNCRAP coming your way!

Been an incredibly crappy few weeks.  Thank goodness we made no Christmas plans (my fam is down in AL and Gary's mom is in Chicago).

I think the depakote is making things worse.  Activity is through the ceiling - and it was already bad.  Gary had to redefine K10 last weekend.  Activity has been so bad he hasn't been able to work.  He can barely read at this point, and cannot concentrate at all.

It's really crappy.

No one deserves this crap.

Laurie

Crappity crap...Cedar Season has hit us in Central Texas; for those who don't know, Cedar Fever allergy attack is like the flu, with a fever and body aches and stuffed up sinuses...that..give...me...a...HEADACHE!!!

poop.

I'm just sick and tired of being sick and tired.  I know it could be much worse, but it's like, I'm friggin' DONE with this, you know?!?

*whew* okay, I'm better now!  ::)

How's everybody doing?  Sounds like a couple of you are doing better.  That makes me happy  :)

Shit, shit and more shit here.  Phil just can't catch a break.  He can't sleep either.  We'll just keep on keeping on, we always do.

And a big ole CRAP for Phil. Total uncrap here in Lewistown. I think some of my higher brain functions are returning. Crap, back to reality.
Keep on keepin on crappers, it will not last. Even you Phil ;)
the bb

It's all just crap.

And I stepped in crap - bbz, I apologized in that lidocaine thread.  Thoughtless of me.  Glad you're uncrapping.

Phil - a big UNCRAP being thrown your way.

Hope there's more uncrap happening for all and soon!

Laurie

Here's to an Uncrappy New Year to everyone. I was actually Pain free and yes I did have a few drinks New Years day here at home but no hits to report. OK, for me.

Phil, we're going to have to kick this Sandy's butt at Dr. Cooper's office. This has got me really p- off.

Carl, didn't have a beer but Crown Royal...
bb,  I hope some of my brain comes back too.
Rolo, are you OK? Almost STL time.

Laurie,   a big Uncrap for Gary.     , Don

Skyhawk5 wrote on Jan 6^th, 2009 at 12:12am:

Phil, we're going to have to kick this Sandy's butt at Dr. Cooper's office. This has got me really p- off.

Yep, I'm pissed too.  Yep we're gonna kick her hinney  ;)

Hi ya all,

I just got off the tank at 40 LPM for 10min and 25 LPM for 10min. The $hit is kickin me a$$ lately. I may have to hit the dreaded DHE again tonight. The pain spikes I just had tell me doom is to come tonight...

I'm done whining now, thank you for listening.

PFD&N to all,

Rolo... [smiley=hammer.gif]

You forgot the CRAP! I got one for you CRAP. Hope the DHE gets you a break.
the bb

Thanks bb's, I'll add the "crap" here.

I am in hell, the stairwell is blocked, the elevator is broken, and I am trapped in iron maiden helmet. They even found a way for the O2 not work down here, and now I am getting spikes on the right side which has only happened once before. Constant K3-5 shadow pain for two days now and no end in sight tonight… My dam friggin head. I hope the rest of you guys are getting some clear time. I have a feeling that I will be hiding a lot in STL.

PFW’s to all,

Rolo… [smiley=hammer.gif]

Rolo, you should NOT have eaten the same chocolate Gary did.  BAD BOY.  That is TOTAL CRAP!

A big UNCRAP is flying your way.

Jen - go kick some Sandy butt!

Laurie

Major triple crap Rolo.  I'll give ya a great big hug when I see ya Thursday.

Same ole crap here different day.  The beast attackin and not much sleep.  Poor Phil  :'(  Plus now that I screwed up the muscles and shit in my chest he has to deal with me all day long and doesn't get a break from me, LOL!!!!

Laurie how is Gary doing?  Tell him to check his PM's.  I sent him a special one the other day, LOL!!!!

Roland, sending De-crap prayers from DTW to MSP. Really looking forward to meeting you at STL. Hang in there brother...

Phil, looking forward to seeing you too, we can make plans on how to kick Sandy's butt..!!

, Don

Skyhawk5 wrote on Jan 12^th, 2009 at 2:38am:

we can make plans on how to kick Sandy's butt..!!

Hehehehehehe  [smiley=sgrin.gif]

I hope you all got DE-CRAPPED in St Louis.

Just checkin in to see how ur doin.

BB & Don----Looks like you are on the road to remission.   Great news.

Phil, Rolo, Gary, Radar & anybody else still battlin the beast-----You guys hang in there.  Here's a BIG OLE UNCRAP for ya.

                                          PFD's
                                           JPC

Aww...thanks, JPC!    ;)

Who in the hell is this JPC guy  ;)  I hope your still doing good.  We were chatting with Don and Helen, Jackie and Blake and MR and we decided when this wonderful Michigan weather decides to give us a break we're going to all get together and we want you there too  :-*

No uncrap in St. Louis.  The beast still found Phil and Rolo.  Don was living it up however, man that guy is a party animal  ;D ;D ;D

I sure am glad that crap is over. I sure wished it were over for you all.
UNCRAP
the bb

when this wonderful Michigan weather decides to give us a break we're going to all get together and we want you there too  

You betcha!  Maybe we'll meet in Holland and I can pick up some new shoes ;)

                                           Uncrap On Ya
                                                  JPC

Hey now- I'm lucky I know my OWN name when I'm in cycle!!  ;D

-Susan

-er, Laura



...uh, Walter?

What happened to Rolo?

                            Uncrap On Ya
                                 JPC

Rolo is fine he is just taking a break,  hopefully he will be back soon.
 Phil 8-)

We'll miss you Rolo.  A big uncrap for ya.  Hope you find the good chocolate.

Laurie

Hiya Laurie

How are things with Gary?  Did you get him into the doc after your accident fiasco?

                         Uncrap on all of ya
                                 JPC

Carl, I can say my cycle has ended and I am pain free once again. I fought the beast hard and yes he did fight back, but I won! With help from my friends on this site I got through those sleepless nights. I got the better O2 to kill the beast.

I found the better mask to help the O2 kill the beast even better. Then when I needed something more I read about the DHE that I need to kill the beast when the O2 can't. And during all of this I found my fellow sufferers at any hour sharing the same grief as me.

My brother after being with me for several days during my recent cycle, and seeing how I would get no sleep, asked me, " how do you not lose your mind?" I said, "I don't know, CH.com I think."

I look back and being able to come to this site, then to this thread, with all of us unloading our 'CRAP' made it easier to deal with the crap. So I'm not going anywhere, just on the PF side for awhile.

Hey, Phil, Jen, bb, Laurie, Rolo, Paige

Don

Fantastic Uncrap news Don.

Yeah, I'll hang around too.  There's still alot of uncrappin to do.

Looking forward to havin a beer or three with ya.  I'll be in touch.

                                 Uncrapness
                                    JPC

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  YEAH DON!!!!!!!!!!!!!!!!!!!!  Fabulous news!

Yeah... saw the neuro yesterday.  He wanted to put Gary on dopymax and Frova.  He's already been on dopymax and it didn't do anything, but he's trying again.   ::)  None of the triptans have worked, and Frova's bearing out that trend....  BUT he wants to talk about putting him on lithium (FINALLY!) after the cardio on Friday.  Also, Gary's got the MRA tomorrow morning.  Big ice storm here, so I hope getting there tomorrow am isn't a problem.

So there's the poop!   ;D

A big smile for those without the crap - and a big fat UNCRAP to those still crapping!

Laurie

Damn.  Forgot the image tags and there's no edit option in this thread for me!   ::)

Laurie

[smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!! [smiley=hammer.gif]fuck!!!

-Dennis-

Holy shit Dennis  :o

You ok??????

 That post is fucked ;D ;D    Hope your ok Dennis.

Damn Dennis

unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]

A big giant UNCRAP on ya too.

Phil, How ya doin?  What's latest on UofM?  Uncrap on you too.

Big UNCRAP for Gary too.

And a big ole UNCRAP for anyone else who needs it

                                                   PFD's
                                                     JPC

 Hi JPC,  Well U of M is still some time in March or April but its been years so I am not too stressed about it,  I am in low cycle right now with only one or two hits a day still have constant shadows and a few bad days here and there but I can handle it.
  Glad your still doing well,  hope this weather changes soon and we can go have some beers.
 Every one else hang in there uncrappy days will be here again.
    Phil

wrote on Jan 31^st, 2009 at 5:05pm:

Hi JPC,  Well U of M is still some time in March or April but its been years so I am not too stressed about it,  I am in low cycle right now with only one or two hits a day still have constant shadows and a few bad days here and there but I can handle it.   Glad your still doing well,  hope this weather changes soon and we can go have some beers.  Every one else hang in there uncrappy unfucked up days will be here again.     Phil

I fixed it for ya sweetie  :-*

Yep beers with JPC, Don, Helen, MR, Jackie and Blake sounds great to me.  To bad we probably won't have good weather until June  >:(

Dennis, hang in there brother. It must be knocking hard for you to post that. When the CRAP comes it does come. We're here so let it out. This is the place to let the crap out I know I have.

Don

I'm ok.  Not sure what the hell happened yesterday.  The beast blew right through everything I had.  I stopped count the hits.  My day couldn't stop either - food shopping day!!!  Three stores between 9am and 4:30pm.

By the time I got home I was just so pissed at the struggle I vented a bit  ::)

I'm sorry you had a shit day Dennis, grocery shopping can do that anyone.  Then you had to be in battle on top of that.  I hope that your day is better today.

BTW - I loved your vent  ;)

I really thought I was coming out of it....again....and today I got a (hopefully rogue) hit from Satan's @ss...hit me hard and fast with no warning, right after walking three blocks to Printmaking class, have to run to the bathroom and throw up, and I didn't have any meds with me....I was shaking all over for a couple of hours.  :( Crap.  I really hope to God it was a one-off.

Uncrap on ya Paige.

That sucks.  Hope it was just a stray reminder hit

                        JPC

Just when I think that the day was going to be PF (anything K3 and below is PF enough for me), I got hit... I even left my oxygen at home because I was so confident!! I was so mad and frustrated that I accidentally set the injection off before it was in my arm,  which meant I had to result to the dang Treximet... another hour and a half wasted to dancing with the devil, not to mention my injection is all over my passanger seat. =\

and for some reason, the shadow seems REALLY bad today... like k4 all day... usually I have SOME k1-k2 time. :(

Crap? I think so. >:(

[smiley=hug.gif] Ouck Kim.......getting caught without my little green tank sucks. >:( Wishing you a peaceful pain diminished day.

Joe

I guess I was lucky in that the majority of my hits were at night after sleep.  My tank was real handy.

                                      Uncrap On Ya
                                            JPC

Paige I'm with JPC in hoping that it was just a reminder that he's still there and that your cycle is over.

Hi Kim, welcome to the shittiest thread on the board  ;)  I'm sorry to hear that you had such a crappy day yesterday.  Sending you wishes that today is going to be a better day.

Thanks for the uncraps...I've been shadowing heavily ever since, but no real hits....

Dang, Kim, that's crappy!  And I KNOW there's a "premature injeculation" joke in there SOMEwhere....  ;D

And I KNOW there's a "premature injeculation" joke in there SOMEwhere

And I am in awe of the restraint shown thus far!!! ;D

Joe

LOL.....!


No comment. :P

Hey all you crapheads!  How you all doin?

BB, Denis, Roll?, Phil, Gary, Don, Radar, Kim and everybody else I missed.
Just checkin up on ya.

Still doing good here.  Wishing the same to all of you.

                                      Uncrap On Ya  
                                           JPC

Hey JPC.  I'm so glad to hear that you're still doing well!!!!

Phil's still dancin' the dance and not getting much sleep, but he's a tough guy and he's dealing with it the best he can.

Thanks for checking in.  I can't wait until spring gets here, I'm still waiting to have that beer with ya  ;)

UnderTheRadar wrote on Feb 4^th, 2009 at 11:20pm:

Thanks for the uncraps...I've been shadowing heavily ever since, but no real hits.... Dang, Kim, that's crappy!  And I KNOW there's a "premature injeculation" joke in there SOMEwhere....  ;D

 I "permature injeculated" in my eye before. ;D

Radar, hope the beast has remained at bay.

Kim - that is crappy!  Hope things are looking up!

Phil - hope that "low cycle" hangs around until that specialist neuro appt and that they can find the right stuff to uncrap your situation!

Dennis - DAMN.  A big UNCRAP headed your way!!!!!!!!!!!!!!!

Gary's crapping out.  Almost off the verapamil that stuck him with blood pressure on the last Wed cardio visit at 80/50 with pulse of 54.  Yeah, that verapamil was really working.  NOT.  He's been dancing with the 105 fevers again.

BUT... one of the infectious disease doc appts is tomorrow!   [smiley=sayyes.gif]  And MRA - FINALLY - is on Thurs!  Man - I hope they find SOMETHING, ya know?

And another UNCRAP for all!

Laurie

wrote on Feb 15^th, 2009 at 3:47pm:

[quote author=655E5455426458556251545142300 link=1224044947/287#287 date=1233807618]  I "permature injeculated" in my eye before. ;D

Watch out, man, that stings like a mutha!!!  :D   Or so I've heard...

WAITAMINNIT- I have a crazy thought....what if THAT'S the cure for CH?!?  :o  ;D ;D ;D

-Radar

I'm doing great!!!  

Had constant shadows and low level hits since that one last bad day but no major hits.  Then on Thursday ... nothing ... totally PF.  Took the wife out for v-day and decided to push my luck.

A bottle of champaign came with the room.  PF!!!
Two martinis with dinner.  PF!!!
Yesterday, Andrea had a headache.  I felt GREAT!!!
Priceless!!!

Now that I think back on it I always seem to have a short cycle that begins right before Christmas and ends sometime in January/February.  Unfortunately it'll begin again in March/April and run till the end of June.  Then I have my fall cycle to look forward to...

Oh well, I'm PF now and lovin life again!!!

PFDAN to all!!!

-Dennis-

What a great time to catch a break...spoil the sweety for V-Day! Hoping you catch an extended break friend...take care!! [smiley=thumb.gif]

Joe

Hey Dennis glad to hear your doing a little better. I hope it stays away until you don't remember the last one. I came out of a 6 month cycle around Christmas.

Laurie,  those fevers with Gary have me worried. Are the Doc's saying what may be the cause of that?? Is he still taking the Depakote?????

Don

Don, thank you so much for asking.  He actually got to a REAL infectious disease doctor!  And the rescheduled appointment with the top infectious disease doc at Montefiore is tomorrow afternoon, so he'll be able to get a second opinion.

But... the opinion, right now, is that fevers that high but being intermittent are rarely caused by infection - and Gary doesn't have the history to look for any of the rare diseases that cause them (he hasn't been to the tropics in South America or Africa ever).  They are generally caused by something called "Central Fevers," which, yay, are neurologic, caused by a dysfunction of the hypothalamus.  Yippee.

That ID doc thinks he should continue to pursue it through the Montefiore guy who can co-ordinate with the neuro there, and that it is probably worth doing the spinal tap just to make sure it is not some really weird version of meningitis despite there being no signs of it on the MRI, and maybe the Montefiore ID doc has other ideas.

So... solve the fever problem, and we probably solve the CH problem.  But I've been searching high and low on central fevers, and even if they're caused by an aneurysm or brain surgery, there's usually no treatment for them.  I've been looking up research and e-mailing the people writing it, but no luck yet.  Found one case caused by nexium, so we had him stop the protonix for five days - but the fevers continue, and the nexium guy's fevers resolved within 20 hours of stopping the nexium, and it's been almost 6 days off the protonix now, but he's already throwing up blood again, so we went ahead and put him back on the protonix again.

Northwestern University is doing a trial of a new cooling blanket to help people with central fever problems.  I just never had the right terminology to search with before.  But I'm not encouraged by what I'm finding.

...So even though the 02 doesn't work for Gary anymore, we still haul around an E tank just in case.... so now maybe he'll get to travel around with his "blanky" too.  Just what he needs, right?   :D

I think the neuro wants to start him on the lithium.... but we're both feeling really discouraged, because it's seeming more and more like his brain just isn't working right and he doesn't have technical clusters, but "cluster like" headaches that are caused by something else (which is why no drugs are working and 02 isn't working) - and right now, we don't know how to find a neuro that knows how to find or fix that "something else."

We just know that Gary needs some kind of relief, and it doesn't seem to be pending.  His quality of life is so low.  Sadly, it's not just the pain.  He's just not ever comfortable in his own skin anymore, because these fevers combined with his gastro problems just make him feel like he's got the worst flu ever all the time.  Fevers of 104/105 degrees 2-4 days a week will do that to you.

So he's really crappy, and at this point, I've looked up a naturopath I'm going to take him to.  At this point, maybe a witch doctor, as Gary puts it, is the way to go.  As long as we're still seeing the others, it sure can't hurt.  At least the guy has lots of letters after his name and part of his training was at Harvard and Johns Hopkins.

Everyone - I sure hope there's a lot of uncrappiness happening!!!!!!  If I can't find smiles in Gary's health right now, it's sure nice to find smiles in what's happening in yours!

Laurie

P.S.  He had to stop the Depakote - it was making things a lot worse.  He also had to stop the verapamil - it almost killed him, and at just 520mg.  His blood pressure dropped to dangerously low levels.  I think the neuro is going to try lithium next (finally).  At least it may help with the depression.

Laurie,

Thank you for the update. Makes you really wonder about Doctors. I think he should be in the hospital until they find the cause of the fevers.

My understanding is fevers that high are life threatening, and Doctors taking so much time to treat Gary are basically comitting malpractice. Am I wrong? It shouldn't take too many Dr's to see this.

I'm very sorry you and Gary still have the BIG CRAP, and please know we all send you UN-CRAP vibes and prayers. Gary hang in there brother, your pain is our pain....

Don

Laurie,

here's two for you and one for Gary. :-/

[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Your strength and perseverance are amazing and inspiring.

-Dennis-

Yow!!   Laurie/Gary    A big ole giant UNCRAP on you guys.

Glad to hear some of you are getting some PF time.

Jen/Phil  hoping you get that UofM appointment sooner.

                              Uncrap on Ya
                                   JPC

DennisM1045 wrote on Feb 23^rd, 2009 at 12:24pm:

Laurie, here's two for you and one for Gary. :-/ [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] Your strength and perseverance are amazing and inspiring. -Dennis-

Yes they certainly are.  Laurie you are a huge inspiration to me, you are one strong lady.  I hope things went well today at the doc, please update us when you get a chance.

Idaho must be agreeing with Phil.  He had a great day yesterday, which is sooooo awesome.  It's been a really long time since a whole day has gone by that I didn't see him rocking.

    Don't mean to jump on board here, but I'm sure glad to know some of us are getting pain free days and some even out of cycle, cause about now, all I'm getting is CRAP days and I seemed to have forgotten what a pain free day was like. 13th week an all time record for me and it sucks as usual.
     Sorry folks, just needed to vent, I'll get my head out of my a$$ now and keep on keep'n on as usual.
   

B.Baer wrote on Feb 25^th, 2009 at 8:16pm:

Don't mean to jump on board here, but I'm sure glad to know some of us are getting pain free days and some even out of cycle, cause about now, all I'm getting is CRAP days and I seemed to have forgotten what a pain free day was like. 13th week an all time record for me and it sucks as usual.      Sorry folks, just needed to vent, I'll get my head out of my a$$ now and keep on keep'n on as usual.

You can jump on in anytime.  The more the merrier  ;)

Sorry your having such a crappy time right now.  Just know that you're not alone.  You have us to vent to 24/7.

Saying a great big huge uncrap for ya!!!!!

Skyhawk5 wrote on Feb 22^nd, 2009 at 11:49pm:

Laurie, Thank you for the update. Makes you really wonder about Doctors. I think he should be in the hospital until they find the cause of the fevers. My understanding is fevers that high are life threatening, and Doctors taking so much time to treat Gary are basically comitting malpractice. Am I wrong? It shouldn't take too many Dr's to see this. I'm very sorry you and Gary still have the BIG CRAP, and please know we all send you UN-CRAP vibes and prayers. Gary hang in there brother, your pain is our pain.... Don

Well, after the doc rescheduling, we did finally get to the montefiore ID doc!  He WAS surprised at the very few tests that were ordered by his GP or the lack of doing anything on the part of the prior two local infectious disease docs....   ::)

BUT... it is the fevers in excess of 107 that can be really dangerous.  The others are "just" frying brain cells.

Now we know why it's been so hard to get to see this guy.  He sees six patients a week.  So he IS the right doc, and he concentrates on very few cases at a time (primarily a research doc).  So that is GREAT.

But.... of course... the issue is going to be one of time.  He HAS seen very high intermittent fevers before.  But apparently literally a million things can cause them, especially given where Gary has traveled in his life.  It appears that it doesn't matter it was 20 or 30 years ago, there are things that can be dormant that long.

So he's got to figure out where to start, so we're getting him ALL of Gary's medical records going back five years.  He should have those next week, he'll have another week to review them, and then we see him again and decide where to go from there.

Also, if they turn out to be Central Fevers (not caused by an infection of some kind), he thinks he'll be able to find a way to treat them symptomatically.

In the meantime, we're charting Gary's temp every four hours for the next two weeks.

He was REALLY nice, and told Gary that he knows he's been suffering a long time, but he's just got to hang in there, because this is the first time he's seeing him, and it is a process that can take quite a bit of time.  So at least we weren't completely deflated, but have realistic expectations.

********************************************

Hope everyone is uncrapping big time!  

And B - sorry you've got the crap, but this is the thread to vent and get some uncrap vibes heading your way!!!!!!!!!!!!!!!!!!!!!!!!!

Laurie

Just Plain Carl wrote on Jan 31^st, 2009 at 4:27pm:

unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]  unfuck  [smiley=referee.gif]

JPC said it best.

Laurie and Gary you need something stronger than an uncrap!!!!!

We're all here pulling for you  :-*

I'm thinkin a double unfuck may be in order  

UNFUCK  [smiley=finger.gif]    UNFUCK  [smiley=finger.gif]

Hope you get some help Laurie/Gary.  

You too Jen/Phil

I keep checkin in on you guys.  Keep postin updates.  I am pullin for ya.

Uncrap on you and anyone else that needs it.

                   JPC

THANK YOU for your efforts - is there anything stronger than an unfuck?   :D

Hope everyone is TOTALLY UNCRAPPING.

Here's the latest Gary news:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

That about says it all.   ::)

Laurie