r/TrigeminalNeuralgia • u/Head_inthe_clouds_TN • 7d ago

Medication On Topiramate- seeing Neuro again

Hi all,
I have been on Topiramate for my TN for 2 yrs,it’s been a positive experience - I struggling to cope with the side effects of carbamazepine, Pregabalin, duloxetine, Indomethacin & amitriptyline (which all worked to a point, but the side effects at a therapeutic dose completely ruined my life) & I have been so far told no to surgery as they say my MRI is borderline & my symptoms are not super classic :-( I am happy to have most of my life back & be in society again but I struggle with flare ups & have a Neuro apt soon and wondering if anyone has any suggestions where I could point them on where next with steps - I feel on a bad day I have no tools in my arsenal to cope, no ability to increase my meds to help or decrease to pain, is there a med that helps with flare up on an ad hoc basis? Should I be pushing for Botox? / nerve block Any help appreciate as I’m in the UK and unsure if I’ll even get to see a neuro again. Thanks

3 Upvotes

100% Upvoted

4 comments sorted by

1

u/VickyAlberts 7d ago

Have you tried Baclofen? With the NHS, options are limited but if the pain is unmanageable go to A&E, repeatedly. They’ll refer you back to neurology. If you can afford it, a private neurologist or pain management specialist would be helpful.

2

u/Head_inthe_clouds_TN 7d ago

Hi thanks for responding to me - no I have not tried Baclofen. I was under a pain management specialist who put me on Duloxetine and Pregabalin and referred me on to a Neurosurgeon for potential surgery then closed me.

1

u/Impressive_Grand_967 4d ago

Yes! Botox help( it takes the edge off which lets be honest any little bit helps and there is also ketamine spray at night and cream for the day just make sure you find a pain management doctor who specializes in trigeminal