Author Topic: Capt Deb is back, too!!!  (Read 5999 times)

Captain Deb

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Capt Deb is back, too!!!
« on: October 12, 2011, 11:26:29 am »
Ahoy Mateys, Wenches and scurvey scallywags!

Sorry yer dear Capt has been AWOL for so long, but here's my excuse........ha ha ha!!!

Typing on the computer for more than a minute or two has been really difficult, but is much better now.  Around springtime, I started getting tingling and numbness in my hands and feet, which soon progressed to severe burning pain.  I was also suffering from an allover body ache much like you get with the flu.  I saw my GP, my neuro, my pain doc, and finally had to wait 2 months to get in to see a rheumatologist (errrrrrr >:() Before I saw the rheumatologist , most of the docs I saw said I had fibromyalgia and one thought I might have ALS which of course scared the bejeezus outta me.  Then the 2  month wait---why do they DO that to us?????  I finally got in to the rheuma and she ran a battery of blood work on me and ruled out the ALS, Lymes disease, RA, And a bunch of other weird stuff.  She agreed with the fibro diagnosis and put me on Lyrica--this was the end of July.

 Meanwhile, Eric bought us a place at the beach!!  We now have a park-model 39 ft RV in Sea Level NC on Core Sound in the outer Banks.  We have a view of the sound, a small dock and boat launch, and we dragged our kayaks and 18 ft Dagger sailboat down here. 

We came down for the moth of August and I was totally unable to walk the 100 yards to the beach as the pain in my hands and feet was so severe.  I thought, you know, hand and foot pain just doesn't jibe with fibro, so I got on the computer and started researching.............

In March, my GP had put me on a low dose of Lipitor to get my not-all-that-high cholesterol down--apparently they do that to everyone these days! Well,  I soon discovered this website:

http://www.spacedoc.com/

I read all I could on the side effects of statins, ordered one of Dr Graveline's books called "The Statin Damage Crisis" and threw my Lipitor in the trash.  Of course I called my GP and told her what I was doing.  It amazes me that all those docs I saw didn't pick up on this!  I bring all my meds with me to every appointment and not one of them put it together that I was having a reaction to statins!!  Needless to say I was pretty angry, especially when I read that the damage in my hands and feet could be permanent. 

Almost immediately my foggy thinking and body ache went away, but the hand and foot pain remained.

I saw my rheuma when we went home and she agreed with me that I had statin damage, but she has yet to rule out the fibro.

We came back to the beach at the beginning of this month and my hands and feet are very slowly getting better, although I went through a period of severe all over twitching as the toxins left my system. Very weird!!  I put myself on a vitamin regimine that includes a buttload of vitamin C and CoQ10, which is an element that cell membranes need to function and that the statins inhibit.

I'm still on the Lyrica, but will probably switch to gabapentin when I run out as I am in the Medicare part D donut hole.

Eric's doc put him on 80 mg of simvastatin following 2 stent procedures and he started feeling side effects, so he is on the vitamin regimine to counteract them and has been able to halve his dose and we got my 90 yr old Uncle off them, too (with his doc's permission) as he was having terrible problems with his feet, which was keeping him immobile and fogging up his still very sharp thinking.  Just talking to him on the phone I can hear him not struggling to remember words any more, which is something I was going through while on them, too.  It is really scarey when you have to describe "that big black thing that we keep the food in!"

Somehow I feel better when we are down here at the beach.  A flat world seems more friendly to someone with a balance disorder.  I have found a walking partner in a new friend who is recovering from back surgery who also has an RV in the park here.  I'll attach some pictures when I get a chance.  Eric is busy building us a deck and this morning I sat out on the finished part and watch pelicans feed with my morning coffee.  Anyone who wants to visit--I'll put all my artsy -craftsy stuff up in my "studio" and you can have the bunkroom.  An RV with a studio!  The studio window is the sound view, too!

This area is Blackbeard's old hold-up and they've newly discovered the remains of his flagship "Queen Anne's Revenge" and are exhibiting them at the Maritime Museum in Beaufort which is the nearest large town.  We are 10 miles to the ferry over to Okracoke Island, which has one of the most beautiful beaches on the eastern seaboard.  If anyone wants to google earth us, we are at Styron Creek, Sealevel, NC.  A short boat ride takes us over to Cape Lookout, the Core Banks, and all manner of small deserted islets.  I am in heaven!!!  Now to just get these feet and hands working!!!

I have missed you all will try and catch up on what is what by reading around the forum.  A big hug to all the folks over on the headache threads.

AAAARRRR!!!!!

Capt Deb 
« Last Edit: October 12, 2011, 11:38:40 am by Captain 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

staypoz

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Re: Capt Deb is back, too!!!
« Reply #1 on: October 12, 2011, 11:41:03 am »
Welcome back, Capt Deb, and so sorry to hear all you have been going through.  We've missed you!!

Your new digs on the Outer Banks sound wonderful and I hope the sea air and the "flat world" help with your healing. 

staypoz

Cheryl R

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Re: Capt Deb is back, too!!!
« Reply #2 on: October 12, 2011, 11:52:19 am »
Capt Deb, so good to see that you are back and hopefully soon better than ever.    I did not know exactly what all was going on with you and you are so lucky to found the answer.     You could write a book on the ups and downs of your health issues.         Your new beach digs sound super and wonder if we could have a symposium at your place!          I hope all goes all goes well for you now and good to have the head of the ship back!                 Do you take B vitamins?    I was told to take those when had some tingly problems and they did decrease.           I know statins have to be watched and you  just added to what can happen!
                        Great to hear from you!                    Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: Capt Deb is back, too!!!
« Reply #3 on: October 12, 2011, 03:05:32 pm »
Ahoy, Captain Deb!

Welcome back.  Thanks for the account of your tribulations with the effects of statins.  It was very informative but I'm sorry you had to go through all that discomfort to find the culprit was your prescribed medication.  Although it's ironic, unpleasant, even serious medication reactions are not at all uncommon and one of the reasons why my wife, who has suffered with Fibromyalgia for 20 years (among other maladies, including major spinal problems) is very cautious about what medications she'll take and, so far, has avoided any real problems with her meds. 

It goes without saying (but I will, anyway) that your new place on the beach at the Outer Banks in North Carolina sounds fantastic and I'm glad you're enjoying it so much (who wouldn't?).  I trust that your healing will continue - and the pleasant surroundings certainly will help!  Meanwhile, thanks for checking in and we look forward to reading more posts as your time and physical ability allow.

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.

kerijacobs

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Re: Capt Deb is back, too!!!
« Reply #4 on: October 12, 2011, 03:34:44 pm »
Welcome back from me too!

I'm so glad you've found some answers and it's going better. Your place does sound beautiful.

I could probably write a book on teenage depression and meds and more meds that lead to suicidal thoughts which leads to more meds and hospitalizations.  Too long of story to go through now, but my daugher is doing better this year (thank the Lord) now that we've tossed out the meds. I know that's not true for everyone, it just seems to be working better for us.

Welcome back!!
Keri

ombrerose4

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Re: Capt Deb is back, too!!!
« Reply #5 on: October 12, 2011, 06:02:05 pm »
Welcome home Deb! We all missed you:) Sorry to hear about all you have been going through. Surprised the doctors did not pick up on this and that you were the one who figured it out-they should have given you your money back, lol! My husband has also had many ill effects from statins but thankfully his pains were not as severe and he did recover quickly. Your new home sounds peaceful! Hope you and your hubby continue to feel better!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Captain Deb

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Re: Capt Deb is back, too!!!
« Reply #6 on: October 13, 2011, 07:02:14 pm »
A note to those on statins--please do your research and take your CoQ10 and Vit C--We're taking 400-500 mg CoQ10 and 10,000 Vit C right now. I also take 1500 mg of calcium, B-complex, Omega 3-6-9 in addition to a multi-vit.  Also on a whey protein powder and guess what?  Headaches down to maybe one a month and no Botox.  Wonder if there is a connection there?

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

ppearl214

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Re: Capt Deb is back, too!!!
« Reply #7 on: October 14, 2011, 04:21:39 am »
Aye Captn! Good to see you back at the helm of the PBW and out of sick bay!  Due to catch up with chatter with you.  MASSIVE hugglez to you and that scurvy scallywag, Dr Lurve and will check on you later

*does Pirate salute! and does about face to plan next game of 1-legged plank walking without stumbling!*

Signed,
I know her name but can't think of it since I have a dr's note for having a brain tumor! ;D
Cursed Cruise Director!
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Keri

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Re: Capt Deb is back, too!!!
« Reply #8 on: October 14, 2011, 07:48:06 pm »
I don't know why I showed up as a 'newbie' in my post, but the 'real' Keri welcomes you back too!

Keri who is not a newbie
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

ppearl214

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Re: Capt Deb is back, too!!!
« Reply #9 on: October 15, 2011, 05:43:35 am »
I don't know why I showed up as a 'newbie' in my post, but the 'real' Keri welcomes you back too!

Keri who is not a newbie

Keri, you have 2 profiles here? Pls see name of other profile referenced as "newbie". Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Soundy

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Re: Capt Deb is back, too!!!
« Reply #10 on: October 15, 2011, 06:12:55 pm »
Glad to see you back ... sorry to hear of your troubles ... Mom was on Lipitor and as a result now walks with a walker or cane ... she has been off of them for about 2 years with little improvement ... glad you are improving ...

gabapentin didn't work very good for me ... if Lyrica works better for you check in to Pfizer's prescription program ... I get my Lyrica free through it ... I couldn't afford it and my insurance wouldn't pay for it ...
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Mei Mei

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Re: Capt Deb is back, too!!!
« Reply #11 on: October 16, 2011, 07:34:27 am »
Dear Capt,

I am so sorry to hear of all your troubles.    I take CoQ10 in the liquid form that I get at Costco.   I hope there is a Costco near you.   If you want the name, let me know.   

I wish you could go to the Genome Institute in Baltimore where I went to find out what's wrong with me.   Dr. Clair Francomano was one of the founders of the Genome Institute at NIH.   She's now in Baltimore at Greater Baltimore Medical Center.   She diagnosed me with Ehlers Danelos Syndrome and there are many classifications of it.   Thank goodness I don't have the worst kind where you die of a burst blood vessel, but fibro etc are a big part of it as well as degenerative disc disease.

She wants to meet both my daughters and grandchildren.    We did a four generational study.   Before she accepts you as a patient, you have  to fill out online or printed out this 37 page history form.   It's really worth it.
Thinking about you,
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

leapyrtwins

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Re: Capt Deb is back, too!!!
« Reply #12 on: October 19, 2011, 02:10:30 pm »
Well thank the good Lord you're back with us.  You were missed - a lot!!!

I've been gone myself - computer issues (DAMN!!!) - plus the last time I tried to log onto the Forum it wasn't letting anyone login.

My computer still isn't fixed - long story that - but hopefully one of these days.

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

kraynok2

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Re: Capt Deb is back, too!!!
« Reply #13 on: November 03, 2011, 06:38:47 pm »
Late catching up on the forum due to issues of my own.  So glad you are feeling better Deb.  I think anytime one can get to a beach to relax is some of the best medicine you can do for yourself.  I hope you continue to do well and keep improving.  I'm taking a few minutes away from a ton of school work to catch-up on here.  I will be posting the problem my family has been having, but first I wanted to read some posts and see what's been going on.  Stay well!  Many thoughts are with you.
Sandy