Tam after so long had to cut you short so soryy hon, but nothing personal my children come first in my lfe and that was my youngest calling in, so next dime will be on me !!!!!!!!!! I do not know what I did, but think I alienated somebody, I considered a good friend, though have, not received an e-mail or return phone call I do think this person knows whom I am am talking about.

Well so far so good with the Topomax.. seems to be helping a bit with the the headaches, theses days any releief with any symptom is a good thing so....MY and GOOBERS biggest thing is the wait on the implant of my intrathecal pain pump

I would like to say thank you to everyone who has stuck in there by my side through my up and downs and also I send out my thoughts and prayers to all who live day in and out with pain, frustration of dealing with doctors lawyers and employers Mark~n~Goober

No apology nec. to Mark!

I had three good days in a ROW! WOW...that's new.

Now, going back down, but slowly - this is different.

I'm at 4 1/2 yrs of TOS, and the past few months have had some different symptoms, but nothing anyone else would really notice - but this is a weird condition, as I always say.

I still have BRIGHT RED cheeks and chest (and sometimes right arm) usually about 2 PM - 7 PM. (And yes, I've had hormones checked twice and they are normal, not menopause.) So this is TOS, besides, the red BURNS like crazy. (This is newish.)

Does anyone else have changing symptoms with their TOS?

hope everyone is doing well.... been kinda crazy here at work the last 3 days- which is both good and bad. I like the "good busy," but hate the "bad busy." now i'm *slightly* p.o'ed at a few coworkers who decided they were all going to be out of the office friday (5 out of 8 in my group) .... only 1 had put it on the calendar. So I had to change my appt with my pain doc, and i have already postponed it from last week. by the time i see him, it will have been 8 weeks. never gone 8 wks w/o seeing him.... This coming friday was going to be 7.5 weeks, and that is pushing it. I put myself on his cancellation list, but my doctor is working short days this tues/wed, so i probably won't get in this week...... oh well. it could be worse.

I worked in an manufacturing environment - we HAD to submit our Vacation or days off requests for approval by lead/supervisor - same as where my husband works.
Of course if emergencies or such that was taken into consideration.
But it was generally a company wide policy - that only so many from an area could be "off" at the same time.

Dabbo-seems like seeing the Pain doc is very very important....did you have to give in? Stick up for yourself..., OK? you are important.

did you mention that without seeing him you won't function ? (that's how I'd feel if i didn't see mine these days...)


hi to everyone- quiet day today, went to the chiro for the first time since surgery, should have done that a week ago, wow. they must have really been jerking my arm all over the place to get me that misaligned.

stiches out tomrorow, and i get to pick up my rib from the pathology dept at St Johns

sweet dreams all,

Johanna

jokat- you're keeping your rib?? we used to have BBQ jokes about that all the time

It's been a part of me for a long time, i couldn't deal with letting them incinerate it!!!

I have taken Topamax a couple of times in the past . I'm supposed to have restarted it but I'm waiting until after my daughter's graduation as I KNOW I will have to take a week or two to adjust to "Topamax and I can only take about 50 mg before I get 'stupid."

When I first took Topamax about 6 years my first idiot pain management doc gave me a titration schedule that almost killed me. Every 4 days I would increase my dose by 25 mg until I got to 400 mg !!!!!

This does not work for me !!! One of my friends titrated her topamax that fast with no problem and she stayed on 400 mg and really like it because she lost weight.

When I hit 100 mg a night I hit the zombie phase of my life. I could not write my name or spell at all. I had no word recollection. I could not figure out how to turn on the TV or any small appliances and I found myself asleep in the garage on a pile of dirty clothes.
I had 2 kids that needed to be driven around and I know for sure that the Lord protected us and the guadian angels were with us, I can't believe I didn't crash the car.
My husband didn't understand what was the matter with me and was being a jerk. He just couldn't accept me saying that I was unsafe to drive, but when I would have to make a decision like in a parking lot I couldn't figure out if I should stop or go. IT WAS REALLY SCARY.

Also, it made me unusually aggressive verbally. I couldn't stand loud noices or I would get very agitated, forget driving with the radio on--no multitaking for sure. I couldn't even do one task. When we were driving home from my daughter's basketball game my husband again was being a jerk and he and my daughter were arguing.
I got very aggressive and yelled at them both and threatened them
Before I would yell at them, but I would never threaten them (yikes, embarrassing)
That when I knew I had to lower the dose, too many freaky things happened.

I found this in Jo's information:
So true for me..... I was the village idiot.
When I cut the dose in half I was much better and stayed on that dose for several years after.
__________________________________________________ ________
"Topamax's Freaky Rare Side Effects: Tongue paralysis. Combine that with not being able to get the right words out and you're all set to apply for the position of village idiot. There have also been a couple of men who started lactating after taking Topamax.
You aren't going to get these. I promise.
__________________________________________________ ____

The key is to increase your dose very carefully. Topamax now even comes in a dose with sprinkles so you can really take a small starting dose.
Take a long time to increase your dose ( no matter what the doc says, I say)

It's a good drug, but a very weird drug. Probably the weirdest med I am on..

Jo- we do have a calendar.... but THEY didn't use it.
JoKat- we would have ALOT of jokes about keeping ribs down here (BBQ capital of the world.....) I did think about telling the people that are here tough $*%&#, that I was going to the doc because i had already put it off 1 week (from the 8th to the 15th). But.... I couldn't do that to the 2 others that are in- the messed up thing is that they're the ones that quasi-understand how important it is that I go. Oh well.... I'm on the cancellation list, so i hope someone cancels tomorrow or thursday.

OC- thx for the heads up about topomax. I already mumble.... i'm pretty sure i would just become mute. and i DON"T need to start lactating. pretty sure that would be weird.