I have been on Trileptal 100 mg for twice a day.....for 6 months.
I have a master's degree in social work, trying to find a job,
and this medicine blocks all pain BUT...
my vocabulary, word searches in my head, might show in an interview, I can't even play scrabble with my son....I feel so stupid. My new husband sees a great difference in me -- I feel like I have alzheimers sometimes.
I know many have pain they can't block - but I can't pay my upcoming bills without a job! Will see neuro soon - but want to ask YOU ALL! Should I cut in half and see that first? If I go off, will this drug not work for me agian? Odds of that?
Neuro said some clear years before it comes back. And yes it was caused by a harried oral surgeon - but can't prove that!
I can't even imagine those debilitating shock-tazers in my face again.
Same story here . I have a Ph.D in psychology. I forget words, can't spell, my motor skills have gone down. It is the meds. Your in the same catch 22. Meds or pain? How do you survive? My kids tell me I have etch-a-sketch head. Everyone in my life has been warned. Luckily my job has been understanding. I have made peace with it. I hope you find a way.
Are you on seizure med? Have you gone off and got back on same one - is pain control effective? THANKS for the quick reply – I feel less alone.
Bobbie said:
Same story here . I have a Ph.D in psychology. I forget words, can't spell, my motor skills have gone down. It is the meds. Your in the same catch 22. Meds or pain? How do you survive? My kids tell me I have etch-a-sketch head. Everyone in my life has been warned. Luckily my job has been understanding. I have made peace with it. I hope you find a way.
I'm on Carbitrol. I had Gamma Knife a year ago. It worked great until Feb. I had gone down to 600mg a day after GK but never got totally off. I now up to 1600mg a day. I see a surgeon tomorrow about MVD. I hope to have that done next month.
The meds work decent. When there is a low front or stress or my menstral or the wind blows...then not so much. I wish there were a magic pill.
I take 150 mg of Trileptal ( a generic, since it’s so much cheaper) and now have to take it 3x daily. I take one pill in the AM and maybe a 1/2 mid morning and full dose at dinner and another 1/2 before bed. I know what you mean about the focus problem, but it got better for me as my body adjusted to the increase in dosage. You may want to try another generic as the timed release may be different in the different meds. I have had an injection out patient surgery last year which cost me about $3000 and did absolutely nothing. Never got off pain meds, just lost time and work. The surgeon was nasty and would not do a thing to help me. I now have another doctor who NEVER does the injection surgery since he thinks it’s a total waste. It only works for you if afterwards you have no feeling or paralysis in your face…nice! I am scheduled for the MVD surgery in September when I have 2 wks vacation coming. I know 2 people who have had it and have been pain free for over 12 years! Hopefully I can hold on until then, but it is truly frightening and such a terrible pain when you get an attack. NO ONE understands the severity of this pain unless you experience it. You are in a constant state of “waiting for the other shoe to drop” when you get a twinge or feel that electric zap coming. I am looking forward to the day when I can wash my face like a normal human being and no longer live in fear of an attack. I wish you well, Sally
I also found that a rainy day or talking or chewing too soon in the morning before the meds could take effect would cause me problems. I take 150mg of a generic Trileptal 3x daily. They are working OK, but some days they don't help at all. The worst attack I had lasted 25 minutes! I didn't think I could live thru it, it was SO painful! Wind and airline travel were also very bad. Anytime now that I fly, I really load up on the meds.
MVD surgery for me in Sept....can't wait to wash my face like a normal human being, and just be able to relax and not live in fear of another attack. The injection surgery I had last year did NOTHING, and the surgeon just washed his hands of me. I now have another doctor and he's been great. 2 friends of mine had the MVD over 12 years ago and have been pain free! Good luck.
Sally
Bobbie said:
I'm on Carbitrol. I had Gamma Knife a year ago. It worked great until Feb. I had gone down to 600mg a day after GK but never got totally off. I now up to 1600mg a day. I see a surgeon tomorrow about MVD. I hope to have that done next month.
The meds work decent. When there is a low front or stress or my menstral or the wind blows...then not so much. I wish there were a magic pill.