I was diagnosed six weeks ago and a low dose tegretol worked immediately. Today I have noticied
a heaviness/ dull ache in the back upper jaw area as well as some tingling on cheek and eye area.
The doc said i could increase as needed and I was wondering if these sensations mean I should increase or should i wait and see if it gets worse?
I guess I am wondering when you all say your meds work does that mean painfree or bearable pain?
Do you still have awful attacks when you are on the meds?
If I up the dose now I worry that they will quit working sooner and I need to get through my sons football season as we travel to see his games and it is his last year...
does any of my thinking make sense....??
still having trouble believing this is really happening.. ;-(
it really depends on your pain threshold and what it is you can live and function with.
some of us are more sensitive than others, some of us have higher pain tolerances.
increasing by one dose sometimes can make a difference.
you shouldn’t be in pain, period. don’t suffer now worrying about months from now
so you need to decide what would be best for you.
please try not to worry and look too far ahead, I know that’s not easy but it’s so important for you to focus on your situation in the now. Mid football season you may require an extra dose or two OR you may go into remission and be pain and med free…
My Neuro and I have always had this plan… pain that affects my ability to function = increase in med or discuss others that may help. If pain free for 4-6 weeks we then start to reduce my med. I ended up with an 8 year remission on my right and ten years on my left!!
before my left side went off the rails, my right side was/is managed at 800mg Tegretol XR.
I feel no pain at that dose at all, only reminder I have TN on right is the three times a day I take my pills. I’ve tried to wean off but within 24-48 hours the pain returns.
my left side became resistant to meds, that’s a worse case scenario, so yes I was on 3 meds and had horrid pain everyday for 8 months or so until I had my MVD.
but I have had TN since 2002.
if what you’re feeling is affecting your ability to function, or is really annoying and you just can’t handle it, increase your dose and see how it goes. it usually takes 3-4 days before you can notice a difference after an increase, sometimes sooner.
thanks so much for your response! you make me feel hopeful. I think I will wait to see what tomorrow brings. The doc gave me vicodin for emergencies so I suppose I can use that if pain increases quickly--we are going camping tomorrow for a few days with the whole fam and I don't want to hurt... ( I have never been a pill taker type person-- so those big time painkillers scare me..) btw I love your long-windedness-the more info ..the better! ;-) --cindy
Lol : )
Before TN, I never took more than the odd Advil! So I understand completely.
Keep in mind, each time you increase you’ll usually experience some side effects for a few days, it varies with everyone,but you may be more tired, dizzy, groggy…this is something to keep in mind when planning ahead.
Enjoy your camping trip, hope you feel ok !!
(( hugs )) Mimi
Don’t let the pain “get away” on you. Pain can be self- generating. It’s best to knock it out fast.
And I agree with Mimi, worrying too far ahead will be of no use to you and those around you. If TN can teach anything, it is truly dealing with what the day brings.
Bellalarke