new dr, different opinions

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Comment by Bethany Phillips on February 5, 2010 at 1:34am

Hi, nice to meet you.

Comment by Jackie on January 18, 2010 at 9:05pm

A friend of mine works for a Palliative care clinic. I've discussed my bf's condition with her and she has talked to her doctors and they all seem to 'like' Lyrica... which is what his neurologist said he may put him on at this visit. We are keeping our fingers crossed.

Comment by anne morris on January 18, 2010 at 1:02am

hello all, just wanted to share - got my new spectacles today, i was in a state of panic a couple of weeks back, and i thought my TN might have something to do with my eyesight, and being i hadn't had them checked for 3 years i went along, anyway no change in my sight, but bought new glasses anyway, just to cheer myself up?? tomorrow its the dental hospital to re-check my teeth, i am clutching at straws i suppose, but hoping that something will turn up and i will get the miracle cure that i pray for???? i am always hopeful. excuse my attempt at humour today, i am feeling flippant. must be the meds ha ha! thinking of you all. anne

Comment by Linn on January 17, 2010 at 9:53pm

Hi Kristi, I hope you will start felling better and everyone else on this page. It's so depressing and frustrating to have this pain. My pain has recently gotten worse. Probably because I've been on Tegretol for 15 years and now it doesn't seem to be working. Pain is worse and increases all the time.. This really is a complex disorder. I won't give up thinking there has got to be a reason, that this disorder starts. I'm searching.
A few things: do you grind your teeth at night? Any tooth clenching? Did you have any whitening trays in your mouth in the past and have there been any traumatic situations in your life and are you stressed a lot. As I said, I'm trying to find a cause to get to the bottom of this. I know it's the 5th cranial nerve rubbing against a blood vessel but most of the MVD and other surgeries don't work for very long from what I've read so maybe, it's not that at all. Please let me know if you have any issues. Also, check out EFT, Emotional Freedom Techniques that have healed a lot of serious disorders like this one. FEEL BETTER

Comment by Kristi Boyer on January 14, 2010 at 6:09am

not even sure where to go with this. couldn't type it last night cause my fingers were not working well. had to go to my GP doc yesterday after periods of blackout and passing out. the side effects from the med changes were proving to be too much. Wanted to make sure we were not missing something. My new neuro on Jan 5th wanted me off lyrica and increase lamictal to 500 mg per day. increased lamictal last week to full dose, and this week started to go off of lyrica. was going to take me another three weeks to go off it! I had never imagined how bad I would feel.
So my doc finally calls me at seven last night and says to go off lyrica by sunday but cutting dose in half rest of week. to go down on lamictal to 200 mg per day in same time frame and to start on tegretal because there is nothing out there that has proven to work any better and being on lamictal will complement it as a secondary med. And to take baclofen for breakthru pain, which i was having last night!
whew...she did research all this for two hours and said that if i can make it thru the changes that in a week i should feel better as tegretal has less side effects. she also said people stopped rx'ing lyrica because of the same side effects i was having and that very few docs still use it? and like i already KNEW that the lamictal was not a front line drug for tn!

she said the new neuro was going on studies from like six years ago when they were trying lamictal and that it proved to be uneffective. UGHHHHHH

i'm willing to go off lyrica quick because she says standard time to come off is 5-7 days not three weeks? and the lamictal worries me because that is cutting my old dose in half! but she says that normal dose of it even for bipolar which is why they are using on me (its a pain thing they don't actually think i am bipolar and i don't have a flipping clue anymore)...i don't want to cut that and all of a sudden start having pelvic pain again!!!
and tegretal, everyone else seems to start there, so not sure why no one else ever tried it with me?? do you all do well on it? she's starting me on a low dose and telling me to work up on it as needed?

i'm just so confused. now three doctors and all of these different opinions. the only reason i consider going with her plan is because at least she is local and can see me to manage problems until i see yet another LOCAL neuro at the end of feb who she swears she will work with diligently to manage my tn.

i want to scream and cry and just figure out what to do so i don't feel crazy. my husband wants me to wear a helmet when i stand up and threatens to put me in a bib and let me drool pea soup down my front!

Comment by Kristi Boyer on January 13, 2010 at 6:28am

Anne, again, please don't judge Lyrica based on me. I don't know others who are taking it and whether or not they have had similar experiences. My doctor wasn't overly complementary about the med and his success rate with his TN patients. His large neuro practice doesn't prescribe lyrica for tn. however, he is using lamictal for me, and i can't fine ANYONE who is taking just lamictal for tn. so far my pain is ok, but on lamictal and lyrica right now. very confusing for me. waiting for that wonderful point where the meds side effects are manageable and the pain is acceptable. as i understand it, that is where we all need to get to. also, i have been on neruotin/gabapentin and it was moderately helpful but didn't feel like i ever got on a high enough dose to know for sure before my first neuro dropped me off of it and started lyrica. now that i think about it, she is probably getting major kick backs from lyrica manufacturer because the stuff is super expensive and she pushed me on that right away. new dr said that didn't make sense?? so try lyrica, others have probably done well. just watch for the side effects. i can talk to you more about it if you have problems but see how you do first! what mg are you going to be taking at full strength?

Comment by anne morris on January 13, 2010 at 1:25am

hi, i only started on lyrica yesterday, and i was hopeful?? but after reading yours and other comments, now i am not too sure. now i think about it, i was better on tegretol, i dont know, cant think straight. as long as the pain stops, luv anne

Comment by Jo on January 5, 2010 at 4:51pm

Christmas day was lovely. Meg woke up at 1.30am!!! I had just gotten to bed an hour before but luckily she was kept busy with her stocking and didn't wake Steve and I until 5.30 which was still early but we didn't mind.

I started back at work yesterday, but we are having the heaviest snowfall here since 1981 so fingers X we will have a "snow day" tomorrow. I hope so anyway!

How was your holiday? I hope you had a restful time of it.

Comment by Kristi Boyer on January 4, 2010 at 2:57pm

Jo, it was amazing, how different they view this and what they say works in their practices. this guy doesn't like lyrica (side effects) but also confused because i thought lamictal was a secondary med not primary. but he has good results with it. guess we'll see. tired of feeling drunk (dizzy, out of it, not motivated, up and down with my moods, and no inhibitions, luckily only with words - which results in crazy twitter stuff)...i need a time to settle down. will be so good.

hope your doc appt goes well too. how was your holiday? are you back at work?

Comment by Jo on January 4, 2010 at 2:46pm

Hi Kristi,
I'm glad your visit with a different Neuro went well. And hope the new med schedule helps and stops you feeling so "out" of it.

I have a 2nd opinion next week and am hoping for a more sympathetic hearing.

Its great to see you back, and all the very best for 2010.

Jo X x