I'm new and just to see how everyone copes day to day with TN.

Replies to This Discussion

Permalink Reply by Gina Berg on May 11, 2010 at 1:55pm

Hi Una,

Welcome to the group and sorry for your pain. I'm glad you found this website though.

I've only been diagnosed with TN for almost 6 months so I'm still trying to find relief and a balance between the meds and side effects. I'm sure you know with these horrid drugs you have to wean yourself on and off so I haven't tried too many but here is my insight.

I tried Gabapentin and it worked wonderful at first but I found myself having to increase the dosages quickly to maintain the effectiveness. I maxed out on the dosage which was a pain having to take a handful of pills multiple times a day. However, as I increased the dosage - I battled negative side effects: the worsts one were sleepiness, lack of coordination (I swear - it made me STUPID, I couldn't remember anything), depression & mood swings. I demanded a new med and had to wean myself off of this one. Man - I found out why people become drug addicts. I was sooooo sick as I weaned off and started my new meds and it was a slow process.

Now I'm on oxcarbazepine. Again, at first I thought I was a miracle drug and answer to all my problems. I wasn't pain free but I feel better and didn't all the side effects like I previously had. Well, after a few weeks my body got used to it and I had to up the dosage and with that came the side effects: double vision, loss of coordination, nausea, and sleepiness. I'm not far from maxing out on this one again - I just don't want to go through the process of changing to a new medication again. I was miserable.

In addition my doc has given my percocet for when I'm having really bad attacks. I try not to take it much, all it does it knock me out.

I'm not sure if I just have a fast metabolism and I burn through these meds quickly or what but I've yet to find the answer... I'm not far from turning to my neurosurgeon. All I know is that I'm not going to let it hold me down and I'm going to try and keep on going as best as I can. Hope this helps!

I know it's a lifestyle change and it's a battle but don't give up.

Permalink Reply by Ally Castellano on May 11, 2010 at 2:02pm

Hi Una. I am sorry to hear that you have been diagnosed with TN too. Hope they were able to diagnose you fairly quickly! I am currently on 600 mg of Lyrica too. I have tried almost every other med there is out there..literally! Lyrica seems to help some, but doesn't give me horrible side affects. I have had TN since I was 13 and I am now 20. My suggestion to you would be that if you don't like being on Lyrica, talk to your neurologist. There are so many other meds out there. Its like a game to see what works, and what doesn't.
I have my good days and my bad days. On my bad days, I get really down and frustrated. But on my good days I try and enjoy what life I can.
Keep your head up!

Permalink Reply by Erin McKeag on June 23, 2010 at 5:16pm

Ask you doctor about tegratol. I have gotten enough releif to feel somewhat normal a portion of the time. Have you noticed any triggers yet? Also muscle relaxers will help because your face will tighten up from the pain and help you sleep. I am sorry to hear that you are going through this too! Hang in there... Thats all any of us can do.

Permalink Reply by Una M on June 24, 2010 at 8:02am

Hi Erin. I took trgretol for about a week and came out in a very bad rash so i'm now on 900mg of gabepblin (sp?) so going to see how that goes.
Havent noticed any triggers yet. Not in that much pain at moment. Just prickly feelin over left side of face and eyes get pain aswell.
Hope you're well.
Una

Permalink Reply by sally choate on November 10, 2010 at 11:29pm

Erin McKeag said:

Ask you doctor about tegratol. I have gotten enough releif to feel somewhat normal a portion of the time. Have you noticed any triggers yet? Also muscle relaxers will help because your face will tighten up from the pain and help you sleep. I am sorry to hear that you are going through this too! Hang in there... Thats all any of us can do.

Permalink Reply by Josie Jackson on February 15, 2011 at 6:59pm

I don't know why they gave you Lyrica, they gave me that crap and told me I was depressed. I came back a week later and was diagnosed with TN. Then they put me on a high dose of hydrocodone and started trileptal lowest dose. Trileptal had my hair falling out so i stopped taking it. Shortly after I went into remission. Now i am on Fiorcet and Gabapentin. The Gabapentin works good for now. i've only had it two days. It worked right awaqy though first pill.

Permalink Reply by Josie Jackson on February 15, 2011 at 7:02pm

That's what I'm afraid of with the Gabapentin, that it won't last long. And make me nuts.

Gina Berg said:

Hi Una,

Welcome to the group and sorry for your pain. I'm glad you found this website though.

I've only been diagnosed with TN for almost 6 months so I'm still trying to find relief and a balance between the meds and side effects. I'm sure you know with these horrid drugs you have to wean yourself on and off so I haven't tried too many but here is my insight.

I tried Gabapentin and it worked wonderful at first but I found myself having to increase the dosages quickly to maintain the effectiveness. I maxed out on the dosage which was a pain having to take a handful of pills multiple times a day. However, as I increased the dosage - I battled negative side effects: the worsts one were sleepiness, lack of coordination (I swear - it made me STUPID, I couldn't remember anything), depression & mood swings. I demanded a new med and had to wean myself off of this one. Man - I found out why people become drug addicts. I was sooooo sick as I weaned off and started my new meds and it was a slow process.

Now I'm on oxcarbazepine. Again, at first I thought I was a miracle drug and answer to all my problems. I wasn't pain free but I feel better and didn't all the side effects like I previously had. Well, after a few weeks my body got used to it and I had to up the dosage and with that came the side effects: double vision, loss of coordination, nausea, and sleepiness. I'm not far from maxing out on this one again - I just don't want to go through the process of changing to a new medication again. I was miserable.

In addition my doc has given my percocet for when I'm having really bad attacks. I try not to take it much, all it does it knock me out.

I'm not sure if I just have a fast metabolism and I burn through these meds quickly or what but I've yet to find the answer... I'm not far from turning to my neurosurgeon. All I know is that I'm not going to let it hold me down and I'm going to try and keep on going as best as I can. Hope this helps!

I know it's a lifestyle change and it's a battle but don't give up.

Permalink Reply by Una M on February 16, 2011 at 3:26am

Hi Josie.

Thanks for your reply.

Yeah the Lyrca didnt help at all and now i've bee on gapbenptin 2700 mg a day which seems to be working. As like you said, i hope it works for a long time. Really hate changing meds because of all the side effects you have at the begining. And with having a 16 month daughter,its not easy to cope at that time.

Take care

Una