Trigeminal nerve pain

[spiegal]

my daughter has had 2 surgeries for pituiatry tumour,  radiotherapy, she still has remnant tumour, (Acromegaly) but also has facial ear and neck pain, which prof says is because tumour is pressing on trigeminal nerve, tried amytrplin, never worked, 3 weeks ago prof put her on Pregabalin, small dose then up to 300 a day, within a few days of upping the dose, she has been in more pain than ever, crying, agitated, and said she thought she had pain before, but now this is unbearable, they have told her to taper off of it, but is there anything I can do, she is 29yrs old, I cant bear to watch her cry and pace the floors at night, its worse at night. Thanks

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

I can not make specific treatment recommendations for your daughter without examining her and obtaining a history, however, I will try to provide you with some information regarding this matter.

Your daughter has what is called secondary trigeminal neuralgia (TN): TN due to an underlying cause, in her case a tumor. TN in general is as I'm sure you know very painful. For TN that is not due to a specific cause, treatments that have been helpful include as you mentioned elavil and lyrica, as well as other medications such as trileptal, carbamazepine, and neurontin. The latter 3 were originally developed as a treatment for seizures but have been found very useful in TN. Other less commonly used medications include phenytoin (dilantin), a seizure medication, and antidepressants such as cymbalta.

Often, more than one drug is necessary to control the symptoms, such that several drugs may be prescribed at once. In your daughter, it may be possible that as the tumor responds to the radiation that her symptoms will improve. If your daughter's TN is refractory to oral medications, and decompression of the nerve from the tumor is not going to be possible surgically or through radiation, if with time there is no improvement of your daughter's symptoms one treatment option is surgical. The trigeminal nerve system includes a body of nerve cells called the gasserian ganglion, and in patients with severe, refractory TN the gasserian ganglion can be ablated (literally meaning burned, intentionally damaged) to prevent transmission of impulses down the nerve. This is often successful but as with every surgical procedure there are risks and side effects, including the occurrence of facial numbness.

I recommend continued follow up with your daughter's surgeon and other medical team members, with evaluation by a pain management specialist as necessary.

Thank you for using the forum I hope you find the information I have provided useful good luck.  

[spiegal]

Thank you for your quick reply, I was just concerned that the symptoms intensified when she went on Pregabalin, she is now tapering off, I hope we see improvement, Thanks