What drugs do you take?

Hi all.
I’m new to this site and was wondering what drugs, combination of drugs, doses and side effects people have.
I’ve just switched to Lyrica 300mg from carbamazopine 1200mg. I’ve taken carbamazopine for 10 years but the side effects have been too hard to deal with.
So far Lyrica isn’t killing the pain but the side effects are better.

Hi Pierre,

I’ve been on Carbamazepine CR (slow release Tegretol) for many years for my bilateral TN.
I tried Neurontin ( Gabapentin) but the side effects were horrible for me.
When my left side became med resistant, I was on tegretol CR 1600mg, Dilantin, and baclofen.
Since my MVD surgery I’m only on 1200mg Tegretol CR for both my left and right side TN.
Other than bad word recall and brain fog and sone memory issues, I have no adverse side effects.
We all respond differently to the meds, so it’s important to try and allow a significant amount of time to let the meds build in our systems to accurately determine wether or not they work for us individually.

Mimi

Thanks for sharing your experience and thoughts Mimi. I appreciate it.

http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion…



2 years i compiled this list here!

Gotta be something a couple of thousand have tried here…everyone is different…Let us know

Thanks so much Kc dancer Kc. This is quite the list! I've only tried the two meds over the last 10 years. I think I will print this list out for my Dr and just leave it with him to ponder. He's a good doctor but no one knows everything

Kc Dancer Kc said:

http://www.livingwithtn.org/forum/topics/for-those-on-the-medicaion...

2 years i compiled this list here!

Gotta be something a couple of thousand have tried here.....everyone is different.....Let us know

Pierre, just goes to show how different we all are. I find Leif from Gabapentin and Tegretol but Teg is harder on my body. Lyrica was very slow in giving relief when I tried it but many here swear by it.

You might be better overnight…if you will have any doc,call in to pharmacy

for you lidocaine patches for face…and… Lidocaine for cream…and if needed mouthwash…magic



I haven’t ever had patches at work…but I would…the cream is Clear but have to put it on 4 x day…at least with patch stronger…and last 12 hrs…you just cut them the shape and size…and last forever in the box.


Maybe you would get to recharge your batteries if you can some ASAP topical....or mouth rinse...wherever hurts most..... Or all 3......... Saved my life to have relief...and kept my meds as lower doses!

thanks I will look up lidocaine. never heard of it. Wonder why my dr never mentioned it. So it's a cream, patch or rince that isn't an injested drug and might help. Good to know after 10 years! Maybe I could at least get some sleep

Kc Dancer Kc said:

You might be better overnight.....if you will have any doc,,,,,call in to pharmacy
for you lidocaine patches for face.....and.... Lidocaine for cream....and if needed mouthwash......magic

I haven't ever had patches at work....but I would.....the cream is Clear but have to put it on 4 x day....at least with patch stronger....and last 12 hrs......you just cut them the shape and size.....and last forever in the box.


Maybe you would get to recharge your batteries if you can some ASAP topical....or mouth rinse...wherever hurts most..... Or all 3......... Saved my life to have relief...and kept my meds as lower doses!



Jackie said:

Pierre, just goes to show how different we all are. I find Leif from Gabapentin and Tegretol but Teg is harder on my body. Lyrica was very slow in giving relief when I tried it but many here swear by it.

I will keep trying the Lyrica for now, Dr wants to see me at the end of the week if I need to increase dose. I'm at 300mg don't know what the maximum dose is. I'm interested in finding out more about the lidocaine kc dancer mentioned. Thanks for you words Jackie. I'm loving this web site. Wish I'd found it years ago

current drugs are...

Carbamazepine 1200mgs/day

Gabapentin 2400mgs/day

Baclofen 30mgs/day

Oral Lidocaine mouth rinse...as needed

As KC mentioned...lidocaine is great. I've never used the cream or patch, as my pain is almost all inside my mouth, but the oral lidocaine rinse is heaven.

Hope you find something that works for you and that you can work with. The side effects sometimes are almost as bad and the condition. .....Ok ok, i take that back, but you know what i mean. *laughs*

~Mistee

I just learned about the lidocaine from this site. Thanks to all who have brought it to my attention Misty and KC. I have spoken to a pharmacist at work and they have ordered me a lidocaine ointment. It should be iin tomorrow so I’m very excited to try it.
Shindig you seem to have been on many things. I hope you have found relief and comfort.

ATN and Chiari Malformation:

800mg Tegertol

20-40mg Oxycodone

10mg Celexa for depression (thanks to this kicking me while I was down-literally)

And the occasional shot in the rear of some heavy duty drugs from the ER and I get whatever med he chooses. And I always hope and pray its not Toradol, cuz that stuff is a waste of everyones time.

My Tegertol dose fluctuates, but never stops.

Neurologist said it often times takes 6-12 months just to find the right med combination and then about the time they start to really work good, some or all areas become immune to the meds.

Not considering MVD as of yet even tho doc suggested consult with neurosurgeon b/c I have it really severe in all 3 branches. MVD scares the hell outta me, so I am going to try all possible med combos first....

Tried Neurontin and it worked for awhile, but now does nothing. Tried Hydros for pain and they are pointless. Norcos work ok....

Current drug list as of today:

2 x Day 200mg carbamazepine ER (Tegretol) They are not quite ready yet to increase it, little dizzy already

2x Day 10mg Nortriptyline

3x Day 10mg Baclofen

Got my first B 12 injection today when asked for it

Have on hand for pain/discomfort or nausea: Phenegran, Zofran, and Lortabs

The Baclofen was just added today, so have no clue if will help me, or if I will have some crazy side affects as I do with many drugs like neurontin and others. The phenegran honestly helps me more then most anything, relaxes me some enough to rest, as is somewhat sedating.

Hi Pierre,
I take Lyrica and get some of the pain down with it. The maximum dose per day is 600mg. This is drug that works better in combination with other drugs aka gets maximum use when taken in a drug cocktail basically any of the other TN drugs used traditionally. The high the dosages the stronger side affect will become. 400 is the starting point of high dosage. Also just as the rest of the medications for tn such as tegretol and oxcarbazipine, Lyrica needs time to build up in your system. If you do have to stop taking this medication never stop taking it cold turkey, tapering dosage is important unfun things may accrue if it stopped cold turkey. Lastly Lyrica is drug your body may have a dependancey on it. Some people do feel the results quicker with Lyrica within a weeks time or start to feel while others seem to take a bit longer to feel the results or feel them, yet other do not get any pharmaceutical therapy from Lyrica. One thing you might want to consider is trying tergatol again but adding a boaster to it such as baclofen if you do not get any results or get enough relief from the Lyrica. I hope you are getting some relief by now or will be soon.



Pierre said:



Jackie said:

Pierre, just goes to show how different we all are. I find Leif from Gabapentin and Tegretol but Teg is harder on my body. Lyrica was very slow in giving relief when I tried it but many here swear by it.

I will keep trying the Lyrica for now, Dr wants to see me at the end of the week if I need to increase dose. I'm at 300mg don't know what the maximum dose is. I'm interested in finding out more about the lidocaine kc dancer mentioned. Thanks for you words Jackie. I'm loving this web site. Wish I'd found it years ago

Hi pierre, i just happened on here and saw yours and Jackies doeses of lyrica. All i can say is all drs. must all have different computer scites they go by. I guestion my drs. so much they show me where they get their info from.They tell me i am maxed out at 200 mgs aday so ya alls guess is as good as mine you would think they could come together on somethig as simple as dosages ha ha.So far the lyrcia has been an awesome medicine for me it has kept those HORRIBLE eye attacks at bay i can tell their still there but not very bother some now only 2 or 3 little ones a month instead of one or 2 a week and you know who i have to thank ?You all by making it possible to see what's out there and what works for some may work for someone else .We end up doing the work of some of the drs. the last one i just canned said he was trying to help me he was bending over backwards.I said was medicine did you offerme to try because i was in HORRIBLE pain and did not look up anything this time.So guess what he didn't 't know what to give me.HEY ain't no one paying me to do his job. I just want this nightmare to end NOW!!! YOU know that might be a good one to try that there Norteiptyline I know someone and her daughter take it for migrains anyone have any luck with it for the burning, nothing, aching, pain or any other suggestions. Please HUG TO ALL!

I have a quick question for anyone that might have an idea how to keep baclofen from upsetting my upsetting my stomach and food isn't. the answer I have tried that. That just made my pain worse. Thanks all.

I have read 300 to 600 mg for Lyrica on various Web sites. I’m not sure what my dr thinks. Tegratol was 1200 mg max according to my dr but I did see someone on here maxing Tegratol at 1600 mg. I’ve never heard of norteptyline before. To be honest before finding this site à few days ago I’d only heard of carbamazopine (tegratol) and Lyrica for TN.
I just. Started experimenting with a lidocaine ointment last night which I learned about from kcdancer also on this site. It numbed my jaw cheek and chin so that I could brush my face with my blanket, pillow etc and not go through the roof in agony. I did sleep a wee bit better. Sadly most of the pain is inside my mouth. I will look into finding a lidocaine rinse.
I’ve never taken baclofen so I don’t know what to tell you about your upset stomach. I’ve been extremely fortunate never to have stomach troubles from medication yet.
Wishing you (all) a pain free day

hmmm...i take my baclofen in with the handful of other drugs i take. (Literally just all in my hand then throw em in my mouth...lol) So i never really associated the stomach upset with it specifically. I take all my stuff with food...but sadly, you've said that won't help with you.

i wish i could help....

As for pain inside the mouth...yeah, that's not fun at all, most of mine is there too. ("How's your toothache today, hon?") Seriously, get some of that magic mouthwash..it helps so much. It's not all day relief, but it's long enough to eat a meal and have a few moments of peace...and in a major flare, it's handy to be able to take meds with.

Here's to a painless day for us all...

~Mistee

I DON'T SEE THIS LISTED AMONG THE OTHER MEMBERS, BUT FOR SOME REASON I HAVE HAD HELP DURING

REAL BAD PAIN PERIODS WITH 300MG DILANTIN. I HAVE TRIED PRETTY MUCH EVERYTHING ELSE LISTED. SINCE A MVD TWO MONTHS AGO I HAVE BEEN BLESSED NOT TO NEED ANYTHING EXCEPT OCCASIONAL

PAIN PILL.

Morning Mistee,

On my 3rd day of Baclofen here, and it started making me really wonky-tired late yesterday. My GP called yesterday, and my blood tests all came back Ok, so he increased my carbamazepine ER by one 200mg pill, to take 2 at night now. He said I could back off the Baclofen if I felt it necessary. Going to try 2 today, instead of the 3. I have so many problems with so many drugs, not surprised here.

Been having trouble getting in to see a TMJ type DMD cause it seems now 2 of them do not take Medicare! Doesn't matter about having Delta Dental they said, as TMJ and joint problems/damage would be filed under medical.

But, they found me one in Louisville, name is Dr. Bryan H. Burdette, ever seen him or know? Have an appointment in September.

Have as GOOD a Day as Possible Everyone..

Lynsey



Mistee Humphreys Shelton said:

hmmm...i take my baclofen in with the handful of other drugs i take. (Literally just all in my hand then throw em in my mouth...lol) So i never really associated the stomach upset with it specifically. I take all my stuff with food...but sadly, you've said that won't help with you.

i wish i could help....

As for pain inside the mouth...yeah, that's not fun at all, most of mine is there too. ("How's your toothache today, hon?") Seriously, get some of that magic mouthwash..it helps so much. It's not all day relief, but it's long enough to eat a meal and have a few moments of peace...and in a major flare, it's handy to be able to take meds with.

Here's to a painless day for us all...

~Mistee