Author Topic: Capt'n Deb  (Read 8266 times)

4cm in Pacific Northwest

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Re: Capt'n Deb
« Reply #15 on: October 30, 2007, 07:42:43 am »
Deb,

I am incredibly curios as to whether you ever get “rosacea� with your migraines.

Rosacea defined
http://www.rosacea.org/index.php

I have some head, face and sleep issues I was hoping were going to go away once the ‘whopping’ size tumor (although only 1/2 the size of Satman’s 8cm) came out… nada….

My sleep disorder I think is from the tinnitus keeping me up at night (some nights it sounds like a refrigerator compressor in my head)


The “cause� of Rosacea has just recently been discovered (announced in June 07)
http://ucsdnews.ucsd.edu/newsrel/health/08-07CauseOfRosaceaDK-.asp

One “protein� stimulant that it being highly scrutinized is “tannin�....

Tannin defined
http://en.wikipedia.org/wiki/Tannin

There is also quite a bit of interest in the relationship between tannins and migraines recently.

Tannins and Migraines link
http://www.widomaker.com/~jnavia/tannins/tannexpl.htm#sourcream

Even in my “House Calls� magazine (from HEI) there is recent article, Titled
“Food For Your Ears:  Many of us do not realize how much foods we eat can affect our hearing and balance systemsâ€?
discussing research studies between food allergies and Meneier’s disease at the HEI allergy clinic.

Meniere's Disease defined
http://www.vestibular.org/vestibular-disorders/specific-disorders/meniere92s-disease.php


Anyway in reading your post here re migraine attack while hiking out alone…
I am wondering if you have tried a tannin elimination diet… yet. (You have probably tried everything at this point)… Just a wild idea I thought I would present.

Did you get any photography done for your paintings? I am also wondering if you are working with non-toxic or toxic paints (i.e. media) in your artwork. Do you have good ventilation in your art studio?

4


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Captain Deb

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Re: Capt'n Deb
« Reply #16 on: October 30, 2007, 09:06:07 am »
No rosacea here, but I have been doing a small amount of caffeine in me coffee about 1/3 real to 2/3 decaf. I'll cut that out again. Solo hiking is something I would never have attempted pre-Topamax! Even thouhg I got a breakthrough migraine, I got 200+ incredible waterfall pix. All I need is 12--one painting a month, to get me through a year! 15 to 18 would be a spectacular year as I do really large work.

4 you are a fabulous researcher and an assett to this forum.  Keep up the good work.

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

yardtick

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Re: Capt'n Deb
« Reply #17 on: October 30, 2007, 06:00:50 pm »
Yes 4, I agree with Cap't Deb.  Windsong was also a fabulous researcher.  I have a desk top  and lap top computer.  Two son's in college, one in gr 11 and one in gr 12.   have to fight for every minute I get on the computer. 

Cap't Deb, I had a horrible headache Sat.  My  face and body ached.  I find since I've been taken the topamax the severity hasn't been as bad as a full blown migraine.  I was given something else to take if I should get a migraine.  Its along the lines of imitrex.  I feel for you Cap't Deb.

 
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

yardtick

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Re: Capt'n Deb
« Reply #18 on: May 24, 2008, 04:33:37 pm »
Okay Capt Deb,

Are you on the "Lost" island keeping Sawyer safe for me? 

I'm missing you!!  Hey wasn't that a song from back in the day?

Anne Marie

Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Jim Scott

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Re: Capt'n Deb
« Reply #19 on: May 24, 2008, 10:16:37 pm »
Captain Deb:

I'm so sorry to learn of 'Dr. Love's' back injury and subsequent necessity for surgery.  I pray he'll be able to have it done soon and be out of pain.  My wife had a similar operation some time ago.  A car accident (she was rear-ended) caused it.  Fortunately, she saw much improvement afterward, meaning less pain.  Unfortunately, my wife has quite a few health issues, including Fibromyalgia  and Chrohn's Disease, to deal with on a daily basis.  She's a real trouper.  Although she went on disability leave from her management job quite a few years ago,  she refuses to give in to her health problems and leads a fairly active life.  I greatly admire her for that. 

I've always been the healthy one in our family.  So, when I went through my AN experience in '06, my wife switched roles with me Although she did a fantastic job, she didn't much like the role reversal.  Mainly because she felt she had no 'backup' if she had a disabling medical problem and needed my help.  Naturally, I got better as fast as I could and now we're back to normal.  ;)  Fortunately, she has remained well and we both pray that this will remain the case for the foreseeable future.

I was also dismayed to learn that your migraine headache returned - apparently with a vengeance.  Fortunately, you had access to a pharmacy and were able to get a shot of Imitrex and return home, shaken but intact.  I hope and pray that this will be a temporary situation for you.

Of course, having both you and your husband incapacitated is daunting and a bit scary but he'll be fine once he has his surgery and I trust that, with medication, anyway, you'll be quite functional, too.  After all, you have a ship to run!  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Capt'n Deb
« Reply #20 on: May 25, 2008, 07:12:20 am »
Capt'n Deb -

best wishes to both you and Dr. Love.

I hope you both get well soon  :)

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

yardtick

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Re: Capt'n Deb
« Reply #21 on: May 25, 2008, 08:00:29 am »
Capt Deb,

I had no idea Dr Love had a back injury and is going to need surgery.  Please give him a big smooch from me.  I understand the killer headaches.  I am on a sick leave from my job.  Tomorrow I start my 6th week.  I wish that magic headache fairy of yours would get off of her small skinny butt and use her magic wand on all of us headache sufferers.  The weather pressure changes just seems to aggravate my headaches. 

Please pop in every now and than and let us know how you are.  Can't wait for you to be better so you can sail us to the new location of the "Lost" island.  I think I hear Sawyer, he needs to be rescued by us ;D

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

ppearl214

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Re: Capt'n Deb
« Reply #22 on: May 25, 2008, 10:08:39 am »
um, hi all... snuck back in to check quick emails... saw this.

Pls see the original post as it was late last year (this was re-bumped). I do know for a fact that Dr. Lurve had his back surgery and did great (at last check when I spoke to her.). I'm due to give her a phone call, so will check on her and see what's up.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Sue

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Re: Capt'n Deb
« Reply #23 on: May 25, 2008, 11:58:42 am »
Maybe she is busy spending all that SSi money she finally got!  ;D

Sue in Vancouver
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

leapyrtwins

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Re: Capt'n Deb
« Reply #24 on: May 25, 2008, 06:08:36 pm »
um, hi all... snuck back in to check quick emails... saw this.

Pls see the original post as it was late last year (this was re-bumped). I do know for a fact that Dr. Lurve had his back surgery and did great (at last check when I spoke to her.). I'm due to give her a phone call, so will check on her and see what's up.

Phyl

I thought this was an old post, but then I saw Jim's reply today and thought the Capt'n was AWOL and I must have missed something.

Regardless, I hope the Capt'n is doing well  :) 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Jim Scott

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Re: Capt'n Deb
« Reply #25 on: May 26, 2008, 03:54:37 pm »
Whoops!   :-[ 

I missed the 2007 date on Deb's post and responded as if it were current.  My bad - but the sentiments remain valid, all the same.

Pleased to learn that her hubby ('Dr.Love' - cute) had his surgery and that he is good, now.  I hope Captain Deb is, too.

Thanks Phyl for straightening this out and setting us on the right track.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Captain Deb

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Re: Capt'n Deb
« Reply #26 on: May 27, 2008, 12:46:55 pm »
Wow! nice to know that you all are thinking about me! I appreciate the well wishes and appologize for the absenteeism--I've been down wiv a nasty bug I got off me snotty grandscallywags.  I really need to wipe off the snot when it gets on me but it's so dang cute! Germy crud it is, it is!

Sadie is off at Puppy Boot Camp for bitey dogs.  She won't quit biting me!  She thinks I'm a big bunny or something.  The trainer says it's genetic. We may not be able to keep her. I'm just heartbroken over it and it's been stressing me out to no end. Stress is not good for headache people!

Anyway I'm trying to keep busy by doing a little gardening.  I go Friday for a training session with Sadie and the trainer and she stays another week.

The disability money is just about gone, but my credit card debt is, too! I've been researching supplemental medigap policies and they are more expensive than my current insurance and don't cover any prescriptions.  The medicare part D, which covers prescriptions is almost as much as my entire disability check. This is definitely not the windfall I thought it would be!

Again thanks for thinking of me and Eric's back is fine now as long as he does his exercises!

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

yardtick

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Re: Capt'n Deb
« Reply #27 on: May 27, 2008, 05:36:43 pm »
So glad you are back!!!  We all need your guidance and humor.  So sorry about Sadie, maybe doggie school will do the trick.

Gots me ironing board ready, can't have our Capt in wrinkled scivies or bustiere ;)

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

HeadCase2

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Re: Capt'n Deb
« Reply #28 on: May 29, 2008, 07:38:43 am »
Capt.,
  Glad to hear you're doing well.  And sorry to hear about Sadie's antisocial behavior.  Just a suggestion, I wonder if she would stop biting you if you hands or pantlegs (where ever she's biting) tasted bitter or spicey hot?  I've been trying to figure out how to keep my samoyed dog from keeping me trained.   As a puppy we wanted to have him scratch at the back door if he needed to go outside to do his business.  And now he scratches at the back door to go out, and then to get back in, and then to go out, and back out.....every 15 minutes.   He has me trained quite well.  If I try to igore him, he has a loud sharp bark that would bother the neighbors, so I can't just leave him outside.  I thought I was the pack leader, but hmmmm.  Where's Cesar when I need him?
« Last Edit: May 29, 2008, 03:22:55 pm by HeadCase2 »
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

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Debbi

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Re: Capt'n Deb
« Reply #29 on: May 29, 2008, 02:29:12 pm »
Oh, don't get me started on dog stories!  I'm the gal with the incontinent, neurotic collie.  And, I have a cat who bites (that'd be The Dark Lord, featured on my blog...).  However, since we don't have any kids to spoil, the animals get all our attention ...

Debbi ... plus two cats and a dog...
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com