Trigeminal Neuralgia or ATN

(deactivated member)
on 4/14/14 6:23 am

I hat gastric bypass 12 years ago. Now I have Trigeminal Neuralgia type 2. It feels like the worst toothache you ever had!   It is constant pain EVERY SINGLE DAY!  I'm still trying to fine the right medications for my constant pain. Also there seems to be a problem with the absorption of the medications. Is there anyone out here that has TN or ATN Too?  What meds do you take now??

Citizen Kim
on 4/14/14 8:43 am, edited 4/14/14 8:43 am - Castle Rock, CO

I have had it for about six years (following a facial surgery) and it is intermittent - lasting for weeks at a time and then disappearing for months and so I am not in constant pain.   Surgery has been suggested if the bouts become longer lasting or if I don't get the remission I get currently.

It is very difficult to describe the pain as it is so acute and life altering, but I am able to get some relief with Vicodin as I don't take pain killers on a regular basis and so haven't built up any sort of resistance or addiction to them.

 

Proud Feminist, Atheist, LGBT friend, and Democratic Socialist

(deactivated member)
on 4/14/14 10:28 am - San Antonio, TX

I was diagnosed with it about 12 years ago. I had a microvascular decompression 10 years ago and have been pain free since. Before the surgery I was taking about 3600 mgs of Neurontin a day. I was a walking zombie and gained about 40 lbs. I currently take a maintenance dose of 50 mgs. Topamax daily. If I stop the Topamax I start to feel the numbness return. 

gabby169kitty
on 4/14/14 11:48 am

I've not had TN but I worked with a group of neurologists for 2 years. Neurontin/gabapentin is a common med used calm down the nerve pain. Neurontin was originally an anti-seizure med and is used for migraines and nerve pain. Other anti seizure drugs are also used. Another drug is Lyrica, it's the drug that's helping my friend, who has TN, the most.

    

Surgery will be hopefully in October or November 2014, with Dr. Megan Gilmore

 

(deactivated member)
on 4/14/14 12:06 pm

Thank you for your replies.  I have a marginal ulcer marginal ulcer so I can't take any Pain pills such hydros. 

I think it takes more mg for us because all of the Meds don't get absorbed.  I had been on 3000 mg a day of Neurontin and was told that is a very high dose.  I've gained about 40 also. 

Im am am going to ask my new Neuro about Lyrica.  

Hislady
on 4/15/14 4:06 am, edited 4/15/14 4:07 am - Vancouver, WA

Unfortunately lyrica is notorious for weight gain too. My neurologist told me neurontin is an excellent drug because it causes so few side effects and you can take huge doses without it causing problems so it may well be the best drug for you. I take 900 mg daily with no side effects. Maybe you just need to adjust the dosage a bit more or add another drug to it. It can be very difficult when dealing with malabsorbtion to find the right dose.

(deactivated member)
on 4/15/14 5:55 am - San Antonio, TX

Huge doses can cause many side effects. A couple of the main ones being severe drowsiness and memory loss. I was on a large dose for two years so I speak from experience. 

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