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Living With Facial Pain

Got new Med - Topiramate

#1

Has anyone tried Topiramate and did it work for you. I got 25mg, but instead of helping me, it makes the pain more constant. They also prescribed Cymbalta. So the first time I tried both within one hour apart hoping that it would work, but I almost died from the pain. The next day, though, the electricity shocks which are constantly on my jaw, was not as bad. So I did not take either one of the pills, because I am afraid they will cause the pain to get worse. When the pain and electricity started again the following day, I decided to take the topiramate by itself, at dinner time, and again same painful results, so that’s it I’m not touching it again!!

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#2

I’m so sad to learn your story. I’m trying to get a study done on something that has had me pain free for 3 years. May I use this when arguing how sub-par and down right cruel most treatment paths are?

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#3

Definitely, so far none of the meds I have tried work. The only thing that worked for me back in 2013 was MVD.

#4

I was prescribed Topiramate, on top of Depakote. Bad combo as both contribute to metabolic acidosis. Made me feel horrible and continues to make me feel horrible but its the only thing I can take at the moment to make the pain help. Doc doesn’t believe I have TN so the only thing thats working at the moment. Also on cymbalta as well, and just had botox 2 weeks ago for TN2. Topiramate is pretty ruthless for memory issues from what I found online. Have you tried oxcarbazepine/Trileptal yet?

#5

Yes, when I first got TN in 2012, they prescribed oxcarbazepine, Trileptal and Gabapetin on different occasions, but none of them worked. Instead of slowing down the pain, they made the pain either constant or quicker pulses. So I went to a neurosurgeon and they did the MVD surgery in August 2013 which lasted until December 2018. I think what triggered the pain again was that I listened to a book online using headphones two days in a row for about an hour each day, On the third day I started getting the electric shocks again, the burning inside my cheeks and stabbings on the side of my head every time I talk, or eat or drink. So I finally had a chance to see a doctor, they prescribed baclofen but did not work, now they prescribed Topiramate with Cymbalta, but I took them together, the pain got worst for about 1-2 hrs then I noticed the electric shocks were gone but I still had the stabbing pain and the wind makes it worse! I tried each one separate a day later on different days and neither one takes the pain away, the shocks moved from the chin to the upper lip. Sorry this is so long, I have a Dr. appt Tuesday. They are supposed to refer me to a neurologist, I’m still waiting for their call.

#6

Mitzi, both meds you mention typically have to tritrate up in your system to reach an effective dose, this usually takes about two weeks (give or take, depending on the person). You may not get the proper benefit from the med by trying different meds on different days. And, usually, it’s not a good idea to start two new meds at the same time as you won’t be able to clearly tell which med is doing what. I hope you get the referrals to the neuro quickly!

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#7

Thanks A, I tried the Topiramate by itself again two days later and instead of slowing down the nerve, the nerve started stabbing pain like crazy and something like burning electricity inside my cheek for hours. But before I ever took it, I only felt the electric shocks when I touched my chin, and the stabbing on the side of my face when I talked. I know this is definitely not working. All those drugs for epilepsy make my TN worse. After doing some research on Cymbalta, I decided to keep taking it until I get to see the neurologist.

#8

Hello! My name is Cris ~ I’ve had TN since 2012 and was prescribed the staple of trileptal … took enough of THAT and long enough that it almost killer me (literally). My sodium levels in Jan 2017 were 19… supposed to in the minimum of 30 to be normal brain/heart function!
…switched to Topamax (25 mg EACH - 75mg in AM & 100mg in PM) … I have had so much better relief without the brain fog, loss of my vocabulary, I don’t stumble around like I’m in a stupor anymore!! I could not believe the difference!! …of course ~ getting my electrolytes back to normal helped also :+1:t3:, but I’ve been in this for over 2 years and have had great success!
I also had a MVD in 2013… THIS saved my life! I was DONE…
I have Trigeminal & occipital Neuralgias

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#9

I use topurimate but for headaches
Not for pain
I had root canal rods amalgam cores taken out
I had mercury poisoning in the 1■■■■
A world opened up and I felt better.
I had a car accident and mold from a work environment I take topomax for It stops headaches. Makes you acidic.
Metabolic acidosis.
I drink aloe Vera juice - makes you alkaline
You need a PH balance of 7.0-7.3 water is 7.0

#10

Yeah, Cymbalta takes a few weeks to take effect, and on low levels the effects might not be apparent. I take 60 mg twice a day. I was taking a variety of things, most of which you have mentioned, and my doc said it was too much. 6 months later after reducing meds and having an increase in pain, she said I wasn’t taking enough!

So while she is incredibly frustrating, upping my Cymbalta dose from 60 mg once a day to 60 mg twice a day has lead to a reduction in pain. Of course that is just me, but I hope you are able to find something soon that works for you. Also, nice profile picture!

#11

Hi, I have TN 1 & 2 - and Occipital Neuralgia. have used Topamax for years for migraine prevention. It helps me, and has not increased any pain, however it’s difficult to take during the day, I learned to take it only at bedtime. When my TN fires up badly, my ON does too so I wind up with a symphony of pain. Topamax does cause memory issues, but the trade off is worth it for me. I was hospitalized for the migraines and pain because I was dehydrated from vomiting, and couldn’t bear the pain too many times to count before we got the ON under control. I take other meds for the TN.

#12

I kept taking the Cymbalta, but I couldn’t sleep, because the sharp stabs kept me awake. So I didn’t take it the next day and the night stabbing slowed down, the following night I didn’t feel them. I don’t know, but all these meds do is make me feel worse. :’( I’m afraid, of messing up the other side of my face, which by the way last night I felt an electric shock on the left side of my tongue. I’m glad they work for you.

#13

I suffered for three months, not talking, only sipping liquids, three weeks in hospital, lightning striking, no meds working, ready to ask the Lord to take me, when FINALLY I was given radiation, called Gamma Knife, and after a few days no more pain. Three months have gone by. If it works, supposed to be good for 5-8 years. BUT BEWARE and make SURE your health insurance covers it.Otherwise you’ll be out $23,000!

#14

I’ve taken topirimate, but can handle successfully. I took much higher levels. My neurologist explained it was necessary to have a consistent level in your system, rather than taking more or less depending on how you feel.

I’m on a different track now and hope to eliminate meds all together.

Keep faith. It’s easy to lose your shit while going through this but it does get better

Andy

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#15

I’ve heard so many bad stories about Gamma knife that it scares me more than getting MVD again. I won’t do anything that servers the nerve.

#16

Hi Andy, when will you be ready to share your new track with the rest of us?

#17

I am with you on the Gamma knife, Mitzi, My Neuro says we’ll do that after we have tried everything else. However there are some success stories as well.
I am on Oxcarbazepene 850 ml per day. so far it effective 90% of the time.
It gets better in the summer so I looking forward to it to arrive.

I feel for you, hang in there you will find the sweet spot. Hopefully soon.

Do you have the book Fighting back yet. If not order it from Amazon today goo info.
Si