Trigeminal Neuralgia

[Thomas45]

I have recently been diagnosed as having Trigeminal Neuralgia, and have been prescribed Carbamazepine 100mg x 2 a day which is the starting dose. It is the only drug which GPs can prescribe for this awful condition. The trouble with it is that it interacts (by making them weaker) with corticosteroids, which I have in my asthma inhalers, and with both DOACs and Warfarin, by reducing their effect. I do not understand the mechanisms involved. When I told a different GP in the medical practice he told me to take my normal dose. I have my own Coaguchek meter and two days ago it showed my INR to have dropped to 1.5. It seems logical to increase my Warfarin dose, but as I cannot get hold of any GP until after Easter, I probably shouldn't.

The drug for Trigeminal Neuralgia which doesn't interact with anticoagulants, but which can only, in the first place, be prescribed by a specialist, Lamotrigine, has awful side effects, although of course anyone using the drug may not get side effects.

Has any other AF person, (mine is now permanent and asymptomatic), had trigeminal neuralgia, and if so, what experience have you had of it?

[Buffafly]

I’ve had it and was told it’s a ‘suicide pain’, fortunately the medication worked. Sometimes you just have to treat the worst symptom and never mind effects on other meds/conditions x

[Sveta2001]

I have been given Gabapentin for trigeminal neuralgia. It's an absolutely deliberating sort of pain. I'm on prednisone for my lupus and GP didn't prescribe carbamazepine due to the drugs interaction. Hope this medication works for your pain. I don't like Gabapentin but simply don't have choice. Xxx

[Anothernewbie]

You have my sympathy. Trigeminal neuralgia is the most painful thing I have ever had. Since my followed an eye operation I assumed it came from there and dosed up with paracets and codeine, to very little effect I may add. In my case it gradually went of its own accord after about 3 weeks. At that time, it was some years ago, I did not have any heart problems.

[Qualipop]

I can't help at all with the drugs but having been on a neurosurgical ward with a lady who had trigeminal neuralgia and having seen just what agony she was in, I simply had to send my sympathy.

[Thomas45 in reply to Qualipop]

Thank you. The medication is working, but there are some break-throughs. Yesterday I'm sure if I asked a GP if I could have taken another tablet he or she would have said yes, but the pain was between midnight and 6am, so I just kept my face warm, which lessened the pain. I do appreciate that you have replied.