I'm feeling extremely frustrated with this situation.
I had an MVD at the end of this April, had 6 glorious weeks of no pain whilst I decreased medication only to have it return full-force after and having to increase medications.
In terms of trying to keep the pain under control, I am taking more medication than I ever have.
I just don't understand this condition at all. At all. and it would appear, neither do a lot of neurologists.
I appreciate that medicine can't know and fix everything. But still, it's frustrating. Last Friday I had to go to the ED as the pain was so bad I just couldn't take it. I was sitting with the Nurse and we could time it... It seemed to go off every 3-4 minutes. It was like my brain was in a weird sending-out-a-pain-alarm-loop. It never did it like that before. It was from that visit that I was told to increase the Tegretol. Since then, I have felt permanently, unsteady on my feet, nauseated and I struggle to stay awake. I have steadily gone up from 600mg to 1800mg (which is in addition to 300mg Neurontin) and I'm frightened of taking that much of anything (unless it's chocolate!). Even still I can time the "breakthrough pain". Every 5 to 6 hours, several times a day and during sleep when I turn and wake up. Even on that much Tegretol. Nobody else seems to be able to help.
In desperation I called the neurosurgeon who indicated that I might need a second MVD. We decided to try the higher level of Tegretol for a month and if no improvement, I would go back to see him. But I still don't understand. If nothing is now touching the nerve root, what is there to do in an MVD? I didn't ask him when I was on the phone because I was crying and feeling embarrassed.... but has anyone here had anything remotely similar?
I would really appreciate hearing your stories.....
Belau,
I’m so sorry to hear of your increased pain after MVD. Unfortunately it can happen. Incredibly frustrating, and discouraging. (( hugs )).
I’ve read of other people’s experiences where the pain returned after MVD and stayed and then others who’s pain returned for a few months then went away.
There is not enough information as to why MVD can totally relieve pain for some and not others. They’ve studied cadavers of people who never experienced TN in life but upon autopsy had compressions on their Trigeminal nerve. I’ve also read of a member of this group who had MVD and surgeon found no compressions.
It’s extremely frustrating that after all this time there just isn’t enough research or solid answers!
All procedures offered for TN are a roll of the dice, there are no guarantees. That being said we’ve had a few members here who have had to have a repeat MVD within months of first one and some saw improvement after 2nd one.
I wish I had more answers, but TN is an enigma.
We have a group called “failed procedures” you might find some direct personal stories there for more info. Just head to the groups tab above and scroll to find.
Make sure you get your blood work done to screen for toxicity with your increased dose. My max was 1600mg Tegretol, I wasn’t allowed to go higher. I think what your neurosurgeon has suggested is a good start, try and then see him to investigate further.
I hope you find relief soon. Sending you positive vibes, Mimi
thanks so much, Guys. Sorry about the whinge. At least everyone here knows what I'm talking about. I'm just the sort of person who needs an answer. Even if the answer is not something I want to hear - I just like to know why! Guess going to have to accept there isn't one for now! :)