TN Remission????

My 2 cents. I’ve had a really awful case of TN since December and haven’t left my house except for drs appointments. I’m on several medications and have been trying different nerve blocks. Back in February I had six blissful wonderful perfect days of absolutely no pain. I thought I am in remission. The nightmare is over. I started seeing friends, going back to my life, taking my daughter to regular normal things. I asked my doctor to take me off my medications. He laughed. I thought, why is this man doing that? Why would I stay on this strong medications when I am not in pain. I took tegretol, gabapentin, baclofen and methadone. He said we can start lowering them one by one. I fought with him and he reluctantly lowered everything. Well six days later I was back in the horrible place I was before. I haven’t gotten any significant relief since besides the decrease in pain level from the medications. I would say, if you are lucky enough to be in remission, give it some time it may be the medication. You can always stop it in the future, but don’t jump the gun like I did because I had to go back up on everything and it took time.

JavaJ, when I started by battle with TN I found it hard to understand & accept too.  I want you know that if this  is diagnosed as TN there is hope and life after this  debilitating pain. In May I will be two years pain free from my  Microdecompression  surgery. If I can be of any help to you please let me know. 

P.S. the deciding factor for my surgery was the side effects from the medication I was on. Two weeks before surgery I was on 1400mg of Tegretol. I will be praying for you. 

dont stop taking your medication cut it down very very slowly 

Java So sorry to here you were diagnosed with this awful disease.

I also had bad side effects from the meds. There are a few natural ways you can go during the day.

I take as soon as I get out of bed 800 mg of Turmeric (A spice you buy in a pill at any pharmacy.) It didn't work for me at night.  If you take it to much it doesn't work.

The other natural is B 12 & also a B complex. This has to be taken with food in the am. It's an energy vitamin.

I like the Turmeric better.

Then at night I take 1/2 - 1 Carbamazapine. This way I sleep through the side effects.

I would ask your Dr. if you have questions about going off meds.

God bless you & I pray you get pain free soon!

Been dealing with this for 20 yrs. Have had 4 surgeries. The pain usually goes into remission when I am on meds.

?Used to take 2-3 weeks to go into remission. Now it seems to go 4-6 weeks. Most of my pain is in my tongue & lips, shooting into my left cheeks & ear at times. In the past 40 days I have lost 20 pds due to eating yogurt & drinking ensures. I force chopped spaghetti & chopped beef down with excruciating pain. After a bite or two the pain starts giving up. I take Tegretol, Gabapentin & 72 hour Fentanyl Pain Patches. I quit all but the Tegretol once remission is assured. I also pray to my God as do friends. The pain is a demon inside your body & the other angelic parts of your body & mind need to drive them away. The spiritual side of looking at this may only be a minor help, but you take whatever help you can get. Good Luck. ps-sometimes you get a false remission. I suggest staying on whatever medicine until you are in full remission for at least 3 weeks.

It can take up to six or even eight weeks for those groggy side effects to go away. Those meds are not meant to be off and on. If you are feeling better, do not come off of them. I totally understand what you mean about your mental state. If, after 6 weeks, you still can't think, you might want to ask about a safe mental stimulant to pair it off with. But be careful because those can also cause TN to be more sensitive. Even if it's just general face pain and your face nerves have gone a little nuts, Lyrica helps because it works on nerves. 

For me it's a matter of balance of things and balance of medications. And knowing my limitations. And knowing when I work best. And you need to stay on Lyrica for it to be effective. If you go off and back on? It'll cause the groggy side effects to restart again, your body getting used to them again. Plus Lyrica is stronger than gabapentin. Neither shouldn't be a stop/start when on higher doses. But even more dangerous when on Lyrica.

Drink plenty of coffee and get plenty of sleep until you see your doctor and stay on the meds until then.

What I also find that helps is giving myself plenty of time in the morning to get ready because I take longer. And start keeping to-do lists. And using your smart phone for alarms to remind you of things. Start using tools to be your second brain until you get used to the side-effects or something else changes.

Good luck and keep us posted. And remember - if this medicine is actually working for you, you are lucky! There are many people who are not so fortunate that have found any medicine to work. Or some are unable to have access to Lyrica.