Re: Cassy, Tegretol worries, Trigeminal Neuralgia, Klonopin.... and running out of meds

January 15, 2008

It sure is terrible Sharon.Im so sorry.:(My Tn has been awful too and

now in both eyes and my right jaw all the way up.I know how bad it

hurts to bring us to tears and I really feel for the pain you are

in.Can you get the Klonopin by just calling the doc?I think you really

need it.Last night was bad for me my TN,my legs,and my back I was

crying also.I took a half of 1 of Renes xanax and it helped some.I was

tempted to try the Tegretol but after thinkn about it decided not to.I

dont need anything more awful to happen,got enough awful stuff to deal

with.I know.It makes me depressed to.How could it not?I think it comes

with the territory.Someone can only take so much pain before it brings

them down.It sucks. Hang in there k.I know itl get better for both of

us.Its like a dang roller coaster hu?I wish there was something I could

do to help.I am praying for you.I dont know what I will tell my doc

about the Tegretol.The more I read about it the more I dont want to

take it.Isnt there sumthn else similiar?luv u!

casy

Cassy, Tegretol worries, Trigeminal Neuralgia,

Klonopin.... and running out of meds

That's the way I feel about it, too. My neuro gave me the script and I

had it filled at Wal Mart for 4 bucks last month. But I haven't taken a

single pill after learning about more it. My neuro was going to give me

something different but I asked for the Tegretol because it's on the

WalMart $4 generic program.

My trigeminal neuralgia has been really bad. I cried at least 3 times

yesterday from the pain and then typing that just now made me tear up

again! I am going to call the neuro today and fess up that I haven't

taken it because I'm worried. I have also let myself run out of

Klonopin (clonazapam). I had a few pills left so I've been cutting them

up and taking a fraction of what I normally take. Last night before bed

I thought " Hey, I'm doing

pretty good--maybe I don't need the Klonopin anymore! " Then I was hit

with the really bad leg pain about 3 a.m. LOL I told my son about

thinking last night I didn't need the med anymore and he said " Isn't it

wonderful to be your own doctor? " I said okay I get the point. ROFL

I have been so down though with the TN since September (and oral

surgery) but it's been so much worse the past few weeks. It's terrible,

isn't it Cassy? I know all the others here on the group who have been

'blessed' with TN along with MS will understand as well.

Pain really messes with my depression and always makes it worse. I

think that's probably normal. As if anything in our worlds could be

considered normal, huh? I've been trying hard to be " up " and it's been

a battle.

hugs)))

Sharon

This email is a natural hand made product. The slight variations in

spelling and grammar enhance its individual character and beauty and in

no way are to be considered flaws or defects.

Tysabri..how

are you doing? how is anyone on Tysabri doing. I guess I'm about

to

start. on metho

for five days and will start Tysabri in a couple weeks. had a brain

mri this morning and the dr. called me an hour later. wow. basically

got me in by noon and showed me all the new lesions. He basially

said " we gotta do something and do something now " and I was

thinking...hmmm. . no shit.

Just kidding. I love my neuro. he he

Mindy

Peace, Love and Hugs, D.

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January 15, 2008

Hi Cassy...I just added to my neurontin, topomax.

It is helping the TN somewhat. I am tapered off the

cymbalta and the tegretol now also.

For some reason, I'm having real bad pain/pressure

in my left (non TN eye). Not sure if this is still part of

my MS flare up, or ON, or...new TN, or? but it hurts

like heck. I hope you are feeling better, and you too,

Sharon, and hope all on list are in a good place today.

I think so many things with MS stink--depression,

fatigue and mobility issues...love you all, Kate

do to help.I am praying for you.I dont know what I will tell my doc about the Tegretol.The more I read about it the more I dont want to take it.Isnt there sumthn else similiar?luv u!casy

..

January 15, 2008

Hi Kate! Thats how my eyes feel. Pain and pressure.Do you have TN in

your right eye?Geez, i hope it didnt spread.:(How did you do on the

Tegretol?Any side effects?Did you have to have your blood checked

alot?Is Topamax like Tegretol?My neurontin isnt doin a darn thing for

me.I cant even fo outside.The light flares up my TN,and sometimes

chewing shoots it up threw the right side of my jaw all the way to my

eye.Feels like lightening striking me.I was chewing a piece of ice and

it happened again,had to spit it out and its happening with food too.

This is aside from the eye deal.Not sure how much longer I can take

it.Hope you feel better and are havn a good day.

luv n hugz,cassy

Re: Cassy, Tegretol worries, Trigeminal Neuralgia,

Klonopin.... and running out of meds

Hi Cassy...I just added to my neurontin,

topomax.

It is helping the TN somewhat. I am tapered off

the

cymbalta and the tegretol now also.

For some reason, I'm having real bad

pain/pressure

in my left (non TN eye). Not sure if this is still part

of

my MS flare up, or ON, or...new TN, or? but it

hurts

like heck. I hope you are feeling better, and you

too,

Sharon, and hope all on list are in a good place

today.

I think so many things with MS stink--depression,

fatigue and mobility issues...love you all,

Kate

do to help.I am praying for you.I dont know what I will tell my doc

about the Tegretol.The more I read about it the more I dont want to

take it.Isnt there sumthn else similiar?luv u!

casy

.

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January 15, 2008

Re: Cassy, Tegretol worries, Trigeminal Neuralgia, Klonopin.... and running out of meds

Hey Cas~Good to read back from you so soon, my friend. Uggh! We both have the same awful thing! This TN stinks don't it? I hope it isn't TN on the other side. That would really bug me! I keep wondering if it isn't from the steroid treatment I just had, but not sure about it. Or possible glaucoma? which runs in my family? Who knows? I might just get to an eye doc and have them give it a quick look-see. Probably nothing. Just pain. lol! You take care. No Ice! Bad! Cold is a trigger for me. warmth is better, like soups, and not so much chewing. And yes, tegretol you need your levels checked about every 6 wks or so. love you sweetie, Kate

Hi Kate! Thats how my eyes feel. Pain and pressure.Do you have TN in your right eye?Geez, i hope it didnt spread.:(How did you do on the Tegretol?Any side effects?Did you have to have your blood checked alot?Is Topamax like Tegretol?My neurontin isnt doin a darn thing for me.I cant even fo outside.The light flares up my TN,and sometimes chewing shoots it up threw the right side of my jaw all the way to my eye.Feels like lightening striking me.I was chewing a piece of ice and it happened again,had to spit it out and its happening with food too. This is aside from the eye deal.Not sure how much longer I can take it.Hope you feel better and are havn a good day.luv n hugz,cassy

..

January 15, 2008

TN sure does stink! Im pretty sure its 1 of the worse things out there.

Gosh! I hope it isnt glucoma. I use to know someone with Glucoma and

she was part blind in 1 eye and almost all the way in the other.The

docs told her she had about 10yrs till she was completly blind in both

eyes. And she was going to school to be a forensic pathologist. I think

you should go get it looked at. Hopefully it is ok but better safe to

know for sure.Hey I forgot to ask you do you want me to send you my

walker?It is the standard hospital type one that I think is aluminum.

The one I told You about that I was using before I got the 1 with the

seat.It dosnt have a seat but it might help.Im so sorry I didnt offer

sooner I had just assumed you got yours. Jus let me know k.

luv ya!

cassy

Re: Cassy, Tegretol worries, Trigeminal Neuralgia,

Klonopin.... and running out of meds

Re: Cassy, Tegretol

worries, Trigeminal Neuralgia, Klonopin.... and running out of meds

Hey Cas~Good to read back from you

so soon, my friend. Uggh! We both have the same awful thing! This

TN stinks

don't it? I hope it isn't TN on the other side. That would really

bug me! I

keep wondering if it isn't from the steroid treatment I just had,

but not

sure about it. Or possible glaucoma? which runs in my family? Who

knows? I

might just get to an eye doc and have them give it a quick

look-see.

Probably nothing. Just pain. lol! You take care. No Ice! Bad! Cold

is a

trigger for me. warmth is better, like soups, and not so much

chewing. And

yes, tegretol you need your levels checked about every 6 wks or so.

love you

sweetie, Kate