Tapering off Medications post-MVD

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Hi Everyone

I have just joined this site. I live in Sydney, Australia.

The (I just refuse to own it as "my") Type 1 TN pain started from the age of 39 and I have had it for 8 years.

It travelled along V3 for the first few years, then V2, then V1 and 2 so it's had its fun.

As I can see for others here, as the years have passed, I have spent more time with it than without it.

Tegretol worked incredibly well for the first few years although I have never gotten used to the 'brain fog'. It began to fail after 4 years. I was put on Lyrica but that did not work. It decreased the attacks some but not all and I felt incredibly "drunk" on it (without the fun of getting to that state!) I started Tegretol again which seemed to work for a while after a break from it.

In the last 18 months, it became so bad that stepping on my left foot or reaching out for something with my left arm fully extended would set it off and I had to be hospitalised. The Tegretol had well and truly failed. I was then put on Neurontin which worked up until I was lucky enough to have had the MVD at the end of April but to my incredible disappointment, I experienced the pain whilst in ICU/recovery. I don't know if I am one of the unlucky souls for whom this procedure did not work.

It seemed sporadic. One day, no pain, the next some, the next what felt like on and off all day, the next again - nothing.

I was asked to begin tapering off the medication slowly. I went from 800mg daily and down to 300mg with no pain. I'm sure people on this board can really appreciate how exciting that was. I was beginning to think 8 years of hell was finally over.

And then last Friday it returned with a vengeance - and all three branches which I had never experienced before. Hell. Absolute Hell. I called the Neurosurgeon who suggested I go back to the full dose of Neurontin pre-surgery and try tapering again in 4 weeks. I have brain fog again. I want my brain back.

Can anyone here pls give me their thoughts? their similar experiences? I thought if nothing was touching the nerve root then technically there should be no pain. I don't understand this and am wondering if the MVD worked or not. I would be grateful for any enlightenment.

I will keep reading across this site. I just thought I would type this out before I get sleepy. The Neurontin makes me tired as well. I can't complain - the full dose has kept the attacks at bay so far...

thank you. Bel

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Hi Bel and welcome to the site. I’m sorry you are experiencing pain after your MVD - that’s just not fair! I had my MVD on 30 January this year by dr mark dexter at Westmead private, all successful for me with no complications. In hospital he reduced my Neurontin 600mg completely by day 4 and reduced my 1000mg Tegretol to 600mg by day 4 or 5. I experienced a little TN pain so was advised to stay on the same level of tegretol for another 5 weeks which I did. After that I reduced by 100mg every week until no more meds. It worked.

I asked dr dexter why MVD works for some and not others. One reason he said is it depends how much damage the nerve had done to it while being compressed/compromised. The longer since diagnosis before MVD is performed, the more chance of permanent damage. I hope for your sake the damage isn’t permanent, I’m still taking vitamin b12 for on recommendation from dr dexter. Don’t know if it works but I figure its worth a go.

Who did your surgery?

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Hi Bel,
I had my MVD on April 9th, I was on high doses of tegretol, baclofen and Dilantin at the time. Upon release from hospital my neuro surgeon gave me an aggressive weaning schedule to get off my meds. By week 3 I was off both the Dilantin and baclofen and on 800mg tegretol from 1600mg. That’s when the shocks returned, horrid, I couldn’t talk, eat or drink.

I should mention that I have bilateral TN, my right side was/is controlled on 800mg tegretol. My left side ( MVD) was resistant to meds therefore the MVD, it was my goal to get down to the 800mg and stay there for my right side. But with the return of the pain on my MVD side I had to add back 2 more pills of tegretol so that I was at 1200mg to be pain free.

My NS and neuro both said that it takes time for the nerve to heal.
We consider my surgery to be a success as I am off 2 meds and pain free at 1200 mg tegretol.
This past week with my neuros guidance I removed a half pill of the tegretol to see how I’d react now that I’m almost 12 weeks post op, well yesterday was day 3 without the half pill and I could feel the twinges of pain beginning.
My reality right now is that my right side needs the 800mg to be controlled and my left side needs the 400mg .
That’s ok with me, with time we will try and reduce again.

Give yourself time to heal, every few weeks you can attempt to reduce again, some people don’t even start reducing their meds until 3-4 months post op.
don’t be discouraged yet, take whatever dose of meds that relieve your pain and allow your body and nerve to heal. Pain =stress, worrying about a failed MVD=stress and you don’t need any stress right now, you need time to heal.
Don’t give up hope! Positive thoughts and vibes!
((( hugs ))) Mimi

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bilateral? good God, Mimi, how are you still upright? One side is enough to make me want to rip my face off. I cannot imagine both. :( thank you so much for telling me your story. some don't start reducing 3-4 months after? I just must be impatient then. I have hated the brain fog almost as much, I want so much to be off those pills.

Patience. Given that some have already failed I should be very grateful I still have something to take that works!

thank you heaps, Mimi.

Bel :)

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You know, that's what I thought, Gen. I have Nursing training. I also work in a hospital! (St Vincent's in Sydney) I thought, if I keep getting hospitalised, if meds keep failing, WHY isn't the neuro offering me something else? I'd asked 3 times about the surgery and kept getting fobbed off. After a comment of "don't worry, I have people on medication for decades without problems" when I asked about the effects of being on medications for that long, I knew it was time to hunt around for a second opinion.

After the last hospitalisation, I was incredibly lucky and a pain specialist - I will offer her name for anyone Sydney-based on this site, because she is beyond Awesome(!) - Dr Rebecca Martin who works at Northern Private Pain Centre near Royal North Shore public and private hospitals - offered to get me a second opinion. I got the surgery at RNS. They were all really fantastic there. Given Mimi's story in response to my post, if I find months and months later I still can't taper off, I will go back to RNS and ask about there having been the possibility of permanent damage. Not that there's anything I could do about it. But at least I could put my mind at rest with an answer either way.

:)

Gen said:

Hi Bel and welcome to the site. I'm sorry you are experiencing pain after your MVD - that's just not fair! I had my MVD on 30 January this year by dr mark dexter at Westmead private, all successful for me with no complications. In hospital he reduced my Neurontin 600mg completely by day 4 and reduced my 1000mg Tegretol to 600mg by day 4 or 5. I experienced a little TN pain so was advised to stay on the same level of tegretol for another 5 weeks which I did. After that I reduced by 100mg every week until no more meds. It worked.

I asked dr dexter why MVD works for some and not others. One reason he said is it depends how much damage the nerve had done to it while being compressed/compromised. The longer since diagnosis before MVD is performed, the more chance of permanent damage. I hope for your sake the damage isn't permanent, I'm still taking vitamin b12 for on recommendation from dr dexter. Don't know if it works but I figure its worth a go.

Who did your surgery?
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oh and it was Dr Johnathan Parkinson at RNS who did the surgery. Lovely guy. :) Also got told to do fish oil daily as well - I guess like the B12... worth a shot. Can't hurt. I guess we can say that about practically anything now that we've had TN!!

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I feel like I’m reading my own story except all my pain stayed in the V3 on the left side. I had an MVD last November with the same experience as you after. By April the pain got so bad I couldn’t talk and couldn’t even drink water through a straw without excruciating pain. I got severely dehydrated and even passed out. My neurosurgeon rushed me in for an emergency balloon compression…woke up pain free and have been ever since!!! An now completely off all meds as well!!! You really should look into it. The trade off is I am numb feeling on that side now but completely worth it.

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If I find I just can't taper off these medications, I will look into that, Linda. Seems different procedures work differently for different people. No one size fits all, I guess. No pain for 3 days on the meds. cannot be ungrateful for that. Could be my expectation were way too high on the MVD outcome - I have a feeling I wouldn't be the first to do that! :)

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I will have a second MVD someday if I must!



I had world class surgeon… Only had full TN for a year. Should have come out great… But only sorta great.,… 1.5 years later 2days week 5% pain…



You should wait several months to judge, takes full year for things to settle.

I hurt at week 11-17, 5%… Then NO pain for a year,no meds… Noe back to low pain…if you had it beating on nerve so long …might be slower heal… In the meantime investigate Lidoderm
patches… 12 hrs relief…keeps me off meds

Or EMLA cream!

We are all so different here… Have you read.
Striking Back. By dr. Ken. Casey?

Many more treatment options!

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Thanks for that, Kc Dancer - I can see impatience is my problem.

I can also see on this board people who takes doses of meds far in excess of what I am taking.

I take 300mg Tegretol and 400mg Neurontin. I find the brain fog so hard to deal with at work.

I can't imagine taking more - which I am about to do - as I've just embarrassed myself by having an attack both in front of the GP just now and the Pharmacist.

Do you simply just get used to large doses? I'm worried about how I'm going to do my job on more and more medication.

I'm so sorry if I seem down in my posts. I hate TN.

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That is where the patches and cream come in…can lower meds with their us for MANY people…just numbs pain away…no druggy effect! So before you go up
On meds check these out… Can’t hurt to try, many here use them. Had to quit my job because of meds. Lidocaine gave me my brain back!

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well unfortunately I am not in a position to quit working altogether. I did quit my current job - although I really like some of the people there, the stress of that job and the TN has nearly driven me insane. two weeks to go in that job and I will then go back to temp work instead. I will definitely investigate those alternatives. I'll try anything! :)

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Great … Let us know!

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