I have learned so much in the last 48 hours about TN. I am so happy to have found a group of people to relate to. I am going to my GP for a follow up tomorrow and hopefully a neurologist by the end of the week.
I have been reading about the different medications to treat the symptoms of TN and it scares me to be honest. I have so many questions.
I am a young, 31, mother of two boys and I stay at home with my 13-month-old. Mental clarity is of utmost importance because I am caring for a small child. The neurontin I take gives me brain fog for about an hour, which is not desirable- yet tolerable. I have noticed a decline in my flare ups with neurontin. I have constant pain, but the stabbing-shocking pain is the worst. From my reading I was considering asking to be put on a tricyclic antidepressant (amp) in combination with neurontin.
I also finding it interesting that neurontin is said to have horrible withdrawl symptoms if stopped suddenly comparable to benzodiazepine withdrawl. It makes me wonder… So many doctors do NOT want to create drug addicts (opioids), but some of the treatment medications for TN can create worse withdrawl symptoms. I wish the doctors who are ‘helping’ us would take that in as food for thought. Don’t get me wrong, narcotics aren’t for everyone but studies show that chronic pain suffers rarely abuse them.
Instead of going into this battle blindly - I have some aersonal now. I know I just have to find what works for me fighting TN.
Any suggestions on meds that won’t knock me on my butt?!?
I can tell you how I was/am able to be on less meds --- lidocaine patch - also comes in a cream. Prescription that I put on that side of my face
makes any breakthru pain I have non existent
Lets say I could be on Trileptal 600 per day and feel no pain
I can instead take 300 mg per day and put patch or cream on when I feel a twinge coming on - or if its a long episode, or can't sleep use patch instead of cream. I try and use cream if I have to go out somewhere -
Keep learning and posting!
I echo Dancer's advice: keep on learning and posting. And I invite you to make use of our Resources page and our Face Pain Info articles as a part of that process. See menu above.
As for advice: neither anti-inflammatory meds nor opioids are effective for pain relief in a lot of cases of TN. Nobody that I've read is quite sure why. Of the "big three" anti-seizure meds used off label for TN, Oxcarbamazepine (Trileptal) is presently enjoying some reputation as the best tolerated for a lot of folks.
I don't think any of the anti-seizure meds in present use against TN pain have quite the "withdrawal" symptoms of benzodiazepine. But sudden cessation of these drugs when they've been used for a while at high doses, can precipitate seizures in some people.
Go in Peace and Power
R.A. "Red" Lawhern,
Resident Research Analyst, LwTN
I must concur that opioids do not help me with my jolting pain, however it does help me with dull, achy pain with my neurontin.
The neurontin was the medication I read caused benzodiazepine-like withdrawals. I may have read wrong. I’d rather have the right information so please correct me.
It will take two weeks to get into the neurologist, but I am at the GP now so I will inquire about the lidocaine cream. I think I will wait to see the neurologist to ask about the adding new medications from this point. What’s two more weeks, right?