I knew more than the doc

LOL went to my doc (gp) first time today and thanks to this site and your input...I expalined what I thought was going on and she looked it up on the computer and agreed. She put me on tegretal at 100 mg twice a day.... I felt dizzy after that wee little dose...geez!! She said I should increase it if i needed-- but she really didn't tell me when.... have open MRI scheduled for thursday... my insurance does not cover the first $1,500 so I will be paying for that-- does this sound ok to all of you??
What was your schedule of upping the dose?? Could you drive on it?? How long till you didn't feel high?? Part of that was prob. b/c I didn't eat much today..... so glad you all are here... I told my friend about it and she changed the subject,,,then said-- well I hope you can still get up early and go tomorrow to the greenhouses!! I guess that is my introduction to how people respond... ;-(

Did you get topical med to keep oral med dose lower? Did you ask for open MRI…cost more?..sounds like a good start. MRI will rule out MS or tumor…most likely will not show TN

I was being a cheap skate and didn't get the topical it was $60.00 but guess who is heading to walmart right now?? that bite of scrambled egg set me off-- goona get some ensure, too. I was little fat --but this was never my diet plan....

I did not ask for the open but I was such a wreck in the office I think that is why she ordered it!! I am going to call tomorrow to see if it is a high enough TESLA (some kind of magnet reading..)

can I share one of my big worries??? I am afraid that the pain as bad as it is is not really it yet..I had a herniated disc and the nerve pain in my back was terrbile--about like this just made me cry and roll on the floor.. but they always say the worst pain known to man--YIKES--that freaks me out.... not sure I have experienced that yet... am I LOOSING it????---

Hi,
Try not to stress too much (easier said than done, I know).
All you can do is take it one step at a time and it sounds like your doctor is prepared to listen to you so that is going to make it much easier to deal with the whole thing. There are lots of really knowledgable people here that I have found so helpful so keep posting when you need adivce or support.
Everyone responds differently to medication but in my case over the past 15 months I have had lots of changes but have now found a combination of three meds that are really helping me.
At the start I found the medication so debilitating and was spending lots of time on the lounge unable to drive. For me it has improved over time, I have a lot more energy but I still have trouble finding words, remembering the plot of a book and can barely write a coherent sentence. It all becomes a trade off, I guess.

Good luck with the MRI! I am one of those strange people that quite enjoys being in the machine. I find it musical so I just keep my eyes closed and make up dances in my mind.

Take care
Hugs
Trish

hey tacocat, glad your doctor is going to help and not just go to some default action. i had a bulging disc on L5/S1 last june and yes that pain was wicked. this pain is basically all the pain you could feel at that one spot, so if someone tore open your face and stuck a blow torch in there, it would feel about the same...there is a max any of us can feel. you will quickly learn coping skills, like what to eat and how to wash your face, that sort of thing, that will minimize the flare ups. the meds will turn down the volume of the hits and you will get through this, hang in there. understand that people are just not sure what to do when they dont understand what is happening. i just say that i have a nerve shorted out inside my skull and i get pain signals when i do certain things...yea they still dont understand, but then they think it is them not you ;-] right now just take it one day at a time...

What was $60…cream or patches

thanks!! so far most of my attacks have been random-- though eating, talking on the phone and crying (the scrunched up face kind...) have set me off-- otherwise it just rolls on in... ;-( hope the meds kick in before too long--just had one dose so far...



Mace said:

hey tacocat, glad your doctor is going to help and not just go to some default action. i had a bulging disc on L5/S1 last june and yes that pain was wicked. this pain is basically all the pain you could feel at that one spot, so if someone tore open your face and stuck a blow torch in there, it would feel about the same...there is a max any of us can feel. you will quickly learn coping skills, like what to eat and how to wash your face, that sort of thing, that will minimize the flare ups. the meds will turn down the volume of the hits and you will get through this, hang in there. understand that people are just not sure what to do when they dont understand what is happening. i just say that i have a nerve shorted out inside my skull and i get pain signals when i do certain things...yea they still dont understand, but then they think it is them not you ;-] right now just take it one day at a time...

cream-- do you like cream or patches better?? Also I got vicodin to use until the meds kick in-- but I am afraid of that stuff...I might use it if it still acts up in bed tonight....


Kc Dancer Kc said:

What was $60......cream or patches

I like patches for home…stronger…and you cut them up to fit pain path…so they last forever…





Wear up to 12hrs.



Cream not as strong doseage…not sure. but rubs in clear to go out…in public…I haaaate Vicodin…makes me ill…tylenol3 with codine is my preferred pain relief but not sure works on TN

well-- I just read my $60 cream doesn't work on intact skin...nice. I wonder if i can return it...THIS SUCKS!! So tired but hurt and am having weird body jerks from the medicine.... only second dose.. I am not sure how to get through this.. ;-(

don't want to add the vicodin when I already feel odd...



Kc Dancer Kc said:

I like patches for home...stronger...and you cut them up to fit pain path...so they last forever....


Wear up to 12hrs.

Cream not as strong doseage...not sure. but rubs in clear to go out.....in public....I haaaate Vicodin...makes me ill...tylenol3 with codine is my preferred pain relief but not sure works on TN

I use my lidocaine cream on intact skin…supposed to…what did they give you?

If not lidocaine what is it…talk to pharmacist…should know more than dr on meds

Hi, in regards to the meds you are taking. See if you can have a sit down consult with your pharmacist. I did and I learned so much.

- set an alarm to take meds at the same time every day so you keep an even level in your body

- drink a full glass of water and eat every time you take your pills

- takes about 6 to 8 weeks to start to feel the results

- have the pharmacist set up a schedule to increase or decrease your amounts

- most likely you will have to add other meds at some point almost all of us out here are taking cocktails of drugs (this is neither right nor wrong nor getting sicker, it just is)

Creams and patches did nothing for me either.

I had the twitches too, along with very blurry vision at the beginning. These are powerful meds we are on; learn everything you can. (and your family too for days you can't think straight)

Wishing you the lest amount of pain you can have today

Honeybumps

Use the Vicodin, just one a day keeps me comfortable.

I went to three Doctors, one was a neurologist too. The last one was an ear Dr. who sent me for an MRI, he thought I had a virus put me on prednisone with no luck. But he did at least tell me I had Trigeminal Neuralgia, the first Dr. to do so. This was in a period of over 3 years. Now I can stay comfortable with Advil and recently I was given Vicoden and one pill a day keeps me comfortable. Was given Vicoden and an Inflammatory med for a torn rotor duff and torn bicep. I only use the vicoden when I really have a bad episdode.

thanks!! I did take the vicodin for my outing today and it worked well! ;-)



Auburn said:

Use the Vicodin, just one a day keeps me comfortable.

they gave me the wrong lidocaine cream-- the one for mucous membranes... like for inserting catheters... hmmm-- but now they gave me some sample pain patches -- called a flector patch--supposed to work for 12 hours... I will try them out tomorrow...

Kc Dancer Kc said:

I use my lidocaine cream on intact skin......supposed to.....what did they give you?

If not lidocaine what is it.......talk to pharmacist....should know more than dr on meds

thanks for the info!! the alarm idea is good!! ;-)

Honeybumps said:

Hi, in regards to the meds you are taking. See if you can have a sit down consult with your pharmacist. I did and I learned so much.

- set an alarm to take meds at the same time every day so you keep an even level in your body

- drink a full glass of water and eat every time you take your pills

- takes about 6 to 8 weeks to start to feel the results

- have the pharmacist set up a schedule to increase or decrease your amounts

- most likely you will have to add other meds at some point almost all of us out here are taking cocktails of drugs (this is neither right nor wrong nor getting sicker, it just is)

Creams and patches did nothing for me either.

I had the twitches too, along with very blurry vision at the beginning. These are powerful meds we are on; learn everything you can. (and your family too for days you can't think straight)

Wishing you the lest amount of pain you can have today

Honeybumps

This really is too funny -- I'm sorry about the mix up - but what a story!!!

I gave my dad a patch for his leg - sciatica along with neuropathy - and he went and got a script - HE couldn't believe how helping just one nerve settle down for 12 hours could happen --- I told him happy fathers day!



tacocat said:

they gave me the wrong lidocaine cream-- the one for mucous membranes... like for inserting catheters... hmmm-- but now they gave me some sample pain patches -- called a flector patch--supposed to work for 12 hours... I will try them out tomorrow...

Kc Dancer Kc said:

I use my lidocaine cream on intact skin......supposed to.....what did they give you?

If not lidocaine what is it.......talk to pharmacist....should know more than dr on meds