Am I nearing the end of medical management?

General General TN & GPN (Old Site)
1

I am currently experiencing a really bad flare up of TN. I can't even move my tongue without a severe attack. And actually...it's very hard NOT to move your tongue lol.

So, I'm currently on 800 mg trileptal as I have been for 3 years. My doctor added Lyrica last year to prevent migraines so I'm on 100 mg of that daily.

The neurologist also added effexor at a very low dose only 37.5 mg daily + 100 MG of Baclofen (only been on this for 1 week) + 200 MG Zonegran daily. The idea is that my body is probably really tolerant of trileptal now so I'll cut over to Zonegran and baclofen.

My concern is that even with ALL of this medicine, my TN is still out of control. I can barely eat, talk, wash my face etc. Has anyone else been in this position? Does it seem like I've reached the end of medical management to the folks here? My neurologist said I should go back and see the neurosurgeon now BUT I've already had MVD...and I'm afraid that the surgical success rates will be really low for me since I've already had the procedure done once.


Thanks for listening!

2

I really hope someone replies to this post. My mother is in the exact same shoes. She's on 1200mg Tegretol, 900 Gabapentin, 200 Phenytoin, 20mg Ametriptiline and Tramadol as needed and the pain wont stop. She's already had a MVD and I'm starting to think we're at the brink of medical failure. I pray to God for her relief and urs as well. This disease is emotionally crushing not only for the patient but for everyone around them as well.

3

I know the max dose of trileptal is 2400mg/day…I take 1800mg/day. I just have to get labs drawn every few months to keep a close watch on my sodium level. Trileptal lowers your sodium. Maybe you can try increasing that. TN is a constant balancing act to keep just the right meds and right doses. Don’t give up!! All your TN friends are right there with you!! ((Hugs))

4

Emma,

The thought occurs to me that you might be using more types of meds than you have to, each of them at doses lower than normally believed to be effective against pain. If you were a member of my family, I'd recommend that you schedule a medication review with your neurologist, to reconsider whether it may make sense to increase dose on a "primary" medication and reduce some of the others that you take. I also don't see Tegretol or Neurontin on your medication list, or any of the opioid medications. All of those meds have a reasonable role to play in managing facial neuropathic pain like TN.

Likewise, be advised by a neurosurgeon on the success rates with a second MVD. My personal impression from years of reading is that for TN-1 patients and those who have electric-shock pain as a part of their overall pain profile, the success rates are still higher than 70% on a second operation.

Regards and best,

Red

5

I was in this position before. My doctor was kind enough to admit me to the hospital . Every day she would attend to me and give me a nerve block in the gum (very close to the cheek). I would not feel anything because of the numbness . The nerve block was done in three or four consecutive days. I also slept most of the time. By the time I was discharged from hospital a week later, I was pain free . Even my doctor was surprised. I do not know whether it works for you.
( My doctor was a pain specialist as well as a dentist . I missed her )

6

Wow...that scares me! I feel so sorry for you and wish you the best of luck. Makes me a bit nervous to hear your dilema as I am facing surgery very soon. I realize everyone is different in their experience with the monster in their head. Gee...I'm on 1300mg of tegratol daily and still feel the little bugger coming through every so often. It never goes away at all, which leads me to believe I will have no break from the pain (no remission)period.I don't even want to think of what I would do without drugs to help. God help us!

7

I just Had MVD surgery a month ago and have (thank god) had no TN pain since. In fact I am nervous hearing now that many have had failed MVD's but so far I am living a new life without the demon on my head. I too had my TN focussed on my mouth functions. For nearly two of the seven years, I became anorexic just from the pain of eating and was skeletal, hospitalized for malnourishment, and also because of my tongue and lips, I was unable to speak most of the time. I still had to work to support my family and became known as a ventriloquist of sorts because I had to communicate without moving my lips. I went months at a time without being able to brush my teeth which was disgusting but at least my dentist understood. People in public would look at me strange everytime I tried to speak to deal with issues and functions that others take for granted. Dont worry, you are not alone. We have become so strong whether you realize it or not, in every aspect of our lives as we suffer. There is an end, and I pray for your every relief, and happiness in your journey. you are stronger than you realize.Love and light

Ps: I am also on effexor and have found that since it is a mood elevator, it is a great tool in helping with the depressive feelings of despair we experience after the torturous mental anguish. I remain on the effexor for now as I also have a depressive disorder, but all in all we know ourselves more than anyone, and know what we need to help carry on, function healthily, and live the life we want to live. And: dont be afraid BOb, because we all give our best to do what is right for us, and I have faith in your bravery> I have no regrets about my surgery....there is always hope, it is what keeps us going.

8

Thank you for the support!

:)

9

Emma, Bob and Nikki...

I'm sitting here with tears in my eyes for you three. I have atypical facial pain that may have come from shingles three years ago (though I'm only 26) and while the pain is horrendous, I don't have it aggravated by touch/chewing/etc. I am so sorry and I hope you are having a better day today and that you find something that helps (or cures!!!) soon...

Kelly

10

Emma,

Except for the fact that I am on different drugs than you, I have asked myself the same question and I am really scared. Hasn't hit while moving my tongue (yet) but has hit with everything else, talking, walking, trying to blow my nose, has hit with me just sitting still, not moving a muscle, but I believe I was thinking, lol. brushing teeth- I can feel the plaque building up on my eye tooth, on the inside but if I try to brush, the nerve gets irritated and then I really have problems. My Neurologists says "DO NOT" go to the Dentist, even for cleaning.

I asked what I would do if I had a dental problem, he said, take something for pain and let them rot and fall out. Guess that might work if you could take pain meds, but I can't take Codine or Synthetic Codine or anything else of the narcotic nature.

I take 400 mg of Dilantin and 2400 mg of Gabapentin (I have taken up to 3200 mg of the gabapentin but could not feel the difference in the pain) daily.

I have been having some really bad days, there is no day that the lightning doesn't hit, sometimes I just have better days that it doesn't hit as much or as hard.

Last few weeks have been really bad, but then Monday was time to go to the Neurologist and starting Saturday, I had real good days, including the day I went to the Dr. , it was an exceptionally good day, hasn't been a bad week since but today I am hitting when I talk, eat again, etc...

I also have had the MVD surgery, not successful at all. Neurosurgeon went ahead and put the piece of Teflon felt in anyway but said the nerve was not bouncing off a vein as he expected to find. He told me since that was unsuccessful, trying any of the other methods would have even less chance of working. I had opted for the best with the MVD, he said now just try to control it with meds. So, here I am, I know exactly how you feel.

When I went to the Dr. the other day and told him how I had been so bad, he gave me a starter pak of "Vimpat"

to take "with" all the rest of the meds in case I get real bad again, I sure don't want to do that but I have them if it comes to that.

I am so depressed, my friend suggested that I take something for the depression. She said, please, just add one more pill.

So, I asked the Dr. for Fluxotine 10 mg. as I just can't handle a lot of stuff. Took my first one last night at bedtime, hope I get in a better mood soon, lol. Sorry to make this post so long, but sometimes it just starts flowing out.

Bless your heart, not being able to move your tongue has got to be horrible. Hang in there, that's all we can do. How? I just don't know.

xxOxx

11

Emma I’m just seeing your message, I’m so sorry you’re in so much pain, I have been where you are. On May 4th, 2023 I had a procedure that eliminated my pain, it’s a miracle for me bc I’ve been living with TN for over 18 years.
This procedure is called “Percutaneous rhizotomy “, it’s very simple surgery but find a neurosurgeon that specializes in it. Very important!
I may have to have it done again in a few years bc it won’t last forever but I’ve never been off of meds until now. Please find someone that can help you, I finally have my life back and you can too. Good luck, hang in there.

12

Do you have type 1,2 or atypical? Mixed? I do know that types 2 and mixed DO respond to baclofen and opioids…type 1 doesn’t. You might want to push for palliative care and demand your pain is addressed, bc it isn’t at this time. No one should have that level of pain for any length of time. Also ask for a compound cream for the external area of your face…they help. 90% of the meds they have you on do not work for type 2/atypical or mixed. I hope you have an advocate for you attending appts with you.