Author Topic: Hemicrania Continua  (Read 59004 times)

Captain Deb

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Re: Hemicrania Continua
« Reply #60 on: June 04, 2006, 10:15:38 am »
Mr Cat--
(my last reply on this post crashed somehow)
I was put on fioricet, a barbituate first thing post op for headaches, but it did nothing for the brainwrecks. My doc also carefully monitors my narc use as we are well aware of analgesic rebound headaches. I went off all meds for 2 months last summer just to see what was up and continued to have the brainwrecks every 2-3 weeks.  Also lots of exertion headaches as well. At least with the narcs, I'm able to work a couple days a week.
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Janet

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Re: Hemicrania Continua
« Reply #61 on: June 05, 2006, 12:36:32 am »
Capt Deb,

I have been reading your posts and it sounds like your headaches are improving but your stomach is acting up.  You also had mentioned that you were tired from the Indomethacin. Did the fatique start after you started the OTC Melatonin or before? Could the fatigue be from the Melatonin since it is used to help people sleep? Just a thought. Also, did you check with your doctor and pharmacist whether you could combine Melatonin and Indomethacin? I had read that the 2 chemical structures were similar and was wondering if it could be a problem. I was curious about the Melatonin and haven't have a chance to talk to my doctor about it. I am not sure I can try it because of the study that I am on. I definately don't want to get kicked out of the Botox study!

Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Captain Deb

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Re: Hemicrania Continua
« Reply #62 on: June 05, 2006, 10:27:19 am »
I'd been taking melatonin for quite a while before the Indo trial
You know, I'd really like to quit taking EVERYTHING and see what my body does--I think I'm totally overmedicated and would like to see how my head reacts to good food, excercise and fresh air and lots of water!
Going to the gastrowatzis today--willing to put the Indo trial on hold to let my tummy heal.
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Janet

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Re: Hemicrania Continua
« Reply #63 on: June 05, 2006, 11:03:42 am »
I hear ya. The first year after surgery, I was determined not to chase a cure for these headaches and time would be the answer. Then, I got so tired of feeling like crap that I decided go on the offensive and attack these headaches. Sometimes the battle is exhausting. Even though I feel a lot better than the first year, I still have to keep a constant assault with meds and lifestyle.

The one R&R is the comfort I get knowing that there are others out there that understand how life changing this whole condition is and that they too are searching and sharing experiences and info. People must have felt very alone before these sites where available.

Janet
Surgical removal of 1 cm x .8 cm x .6 AN on 4/2004.

Captain Deb

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Re: Hemicrania Continua
« Reply #64 on: June 05, 2006, 06:27:47 pm »
AMEN!
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Captain Deb

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Re: Hemicrania Continua
« Reply #65 on: June 06, 2006, 04:17:12 pm »
OY!
Anyone ever have an Indomethacin withdrawal headache? Had to discontinue use cuz it wrecked my stomach. The WORST Up all night, pounding headache with pulsatile tinitus--gotten better enuff to post a HEY to everybody!
Catch ya later
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Hemicrania Continua
« Reply #66 on: June 06, 2006, 05:02:47 pm »
Laz stands on desk at work, gets stared at by colleagues, chants a plenty to oogle, boogle etc, doesn't do any whirlies coz might fall off the desk. Heads a flingin (does wonders for my headaches too)!, chants a ravin.

Oh Capt Deb, a surprise do thou need,
perhaps a huff and a puff
of that magical weed,
will bring you some peace and rest,
with no pain to atest.
That mighty headache jumbie
is cruel as can be,
we all need to chant,
for our Queen Bee

So lets all get up on our desks
and pound and pound our chests
to the beat of the world wide web,
for our wonderful Captain Deb,

The weed as we know,
is not really for us,
but if pain it does relieve
then what the heck,
better than a pain in the neck.

Now the writer you may say
is putting his foot astray,
coz the weed he has never puffed
as it does cause people to huff huff.

So for our Captain Deb,
we hope ya feel better
coz we all luv ya dearly
and ya give joy to as all
so get better quickly
so ya can stand and stand tall.


Laz


2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Captain Deb

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Re: Hemicrania Continua
« Reply #67 on: June 07, 2006, 09:08:48 am »
Yikes! Laz-bloke--I do appreciate the ant-jumbie chant!  I don't think medical "M" is legal in NC and my hubby works for the state, so probably not a good idea. BELIEVE me if it was legal I'd consider it!
Dr. Love's Birthday is today (he's 25 and quite the lil' love muffin) and I baked him a flippin' cake with a flippin' ragin headache and stomachache last night and  iced it this mornin'.  Just as I finished, flippin' Martha comes on with "how to ice the perfect cake" Well, mine came out a lil' heeled over to the left, and kinda crumby (with crumbs, not taste wise, my chocolate cake RAWKS) but that's LLLLUUUUURRRRRVE for ya!  Bakin' someone a flippin' cake with a flippin' headache.
The two meds I can take to be able to work a little and have a somewhat normal life have eaten through my stomach lining, so I guess it's back to square one---the hemicrania continues.......................................

Love to alla ye wenches and blokes
Capt Deb

"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

matti

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Re: Hemicrania Continua
« Reply #68 on: June 07, 2006, 09:41:53 am »
Happy Birthday Dr. Love  ;D

Keeping you in my prayers capt. Deb and sending you a hug
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Static

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Re: Hemicrania Continua
« Reply #69 on: June 07, 2006, 08:11:43 pm »
Hey Deb!
Been reading your posts on this thread and was wondering if you take nexxium or any other meds that help your stomach.  I take the nexium and still, at times, have problems with certain meds, but maybe that is the one med you should be on!  I had a perforated ulcer sewn up in emergency surgery about 7 years ago and have been on some type of stomach meds ever since.  As soon as I stop, I start having problems.
Just a thought :/
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Captain Deb

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Re: Hemicrania Continua
« Reply #70 on: June 07, 2006, 08:49:37 pm »
Oh yeah--been taking Aciphex and when that runs out ($$$) I start on Nexium--also on some yucky liquid crapola--hard to time alla these meds--take this one hour before eating--take that 3 hours after eating--don't these folks know I eat all the time--Jeeez!
Have had a very very rough day--stomach cramps, headache.  Thanks or all your well wishes-got to sit outside for a little while-tried to pull a few weeds, but bending over tweaked my tummy

Ya know I missed another day of work,too.  I figured it out that I have missed at least 600 days of work in the past 3 1/2 years since my surgery. I pay myself $300 a day when I price a painting which covers my materials, too. So it's about $250 a day x 600= $210,000.  There goes the money I was going to use to build my studio on my already- paid-for beautiful lot next to our house. Still actively pursuing disability, which, if you are college-educated and self-employed, is just about impossible to get unless you are comatose.
Oh well, the day sucked, but the choccie cake RAWKED!
Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Larry

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Re: Hemicrania Continua
« Reply #71 on: June 09, 2006, 01:46:18 am »
Okey dokey guys,

I had a really good session with a pain management neuroligist today - who actually said that he reads this web site - scary stuff!

Anyway, apart from a number of discussions which I will elaborate on another time. He has suggested that i try a combo (burger, fries and drink) of neurontin and topomax. The topomax has a few side effects - one of which is - weight loss! Ok, i thought, I can handle that one.

He also indicated that 40% of med applications for headaches fail and to stay away from surgery to relieve tension.

He said that i will notice a change from the drug in about a week's time.

I'll keep ya posted.


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Captain Deb

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Re: Hemicrania Continua
« Reply #72 on: June 09, 2006, 05:49:10 pm »
Yikes! I tried Topamax twice!  Had severe psych side effects--couldn't stop crying.  Doc hasn't put me on neurontin yet, but I emailed him the AN post-trreat headache thread and asked him to give me some sorta extended relief pain med till I can get to my local pain clinic--gonna try some mechanical stuff--trigger-point injections or Botox. Ins won't cover medical Botox--a*****es! HEY! I have a headache--I'm allowed to cuss! But I have a huge deductible and the insurance co. won't let me upgrade.  I want to give them more money every month and they won't let me--go figger. Maybe they can Botox summa these Shar-pei lines I got from too much fun in the sun!  ;) (I'm not gonna tell ya how old that there picture of me is!!!)
Feelin' a little better today--tummy is healin up nice and I got my pain meds back for now--sure is nice not to have a low-grade headache with an occaisional thunderclap crashin' through my skull.
I'm dyin' for some West Indian food!!! I think I'll bribe my doc with a painting to tell my insurance co. that I need a house in the Caribbean to be cured.  With what they paid for my surgery plus what I paid for all the subsequent issues, plus $300 a day for 600 days of missed work, I coulda hadda flippin' MANSION right next to Kenny's in Peter Bay on St. John!  Well, at least a nice lot on the East End.  Dr. Love and I had one all picked out and BOOM!  AN time. Still having a hard time with acceptance right now--thanks for letting me vent.
Laz, you are such a dear guy--I hope you find your Magic Bullet soon!  I guess that goes for all of you family on the forum whether it's headaches, facial paralysis or balance issues or just plain FUNKINESS!
Love and Hugs,
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Static

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Re: Hemicrania Continua
« Reply #73 on: June 09, 2006, 08:00:21 pm »
OMG, I hear ya about the $$ and meds.  I am currently going to (actually was going to) PT for my shoulder.  I am not big on PT other than, show me what to do and I'll do it, I don't need to see you 2-3X a week and fork over $20 a pop especially since I was laid off.  Topomax didn't really help me too much but I tried too many things with it to get relief, I never really stayed on it continually and I also never lost any weight (one side effect I could deal with)!  I'm so glad you guys are always here cuz nobody wants to hear any of this stuff!
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Captain Deb

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Re: Hemicrania Continua
« Reply #74 on: June 10, 2006, 07:21:11 pm »
Static,
Every time I see one of your posts I just want to smoosh my face up against the 'puter screen and nuzzle that adorable fuzzy puppy! :-* :-* :-* :-*  I have missed you!
Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW