Hi, I've just read, (from BBC Health News 13/11/13), about a promising trial last year, on a sodium channel blocker for TN medication. Has anyone heard of the results or what the SCB is called?
I don't know which sodium channel blocker the BBC was referring to, but I've been following this company.
There is a zalicus trial going on right now for Shingles, post herpetic neuralgia, that is interesting.
I had seen a flurry of articles saying CNV1014802 was moving right along.
I have GPN, in addition to a cavernous malformation in my brain, and severe spondylosis in my cervical spline I'm a newbie at this type of treatment. I have just had my 4th Lidocaine infusion. These are done every 3 weeks. I still work, and this does have an impact, as I take that day, and the following day off from work. Seems to take a lot out of me while doing it, and for a few days after.
Too soon to tell how effective it is. So far, if there has been improvement, I can't tell how much, if any. I don't believe it will take ALL of the pain away. I'm hoping it will "kick-in", and to see the benefit of doing it. It might not work for everyone. I find it to be a bit too intense at times, though the strength & mixture can be dialed by the administering doctor. Best to keep a detailed pain log and communicate thoroughly with the doctor that is administering it, every time you go back.
Other patients have indicated that it is very effective, and it has given their life back.
In addition to lft sd ATN and rt sd TN, I also have bilateral chronic paroxysmal hemicrainia and occipital neuralgia/neuropathy. Our TN system also has a vascular system involved with the T nerve, brain and brain stem. To combat my TAC's I take a sodium channel blocker (high blood pressure med) called Verapamil. It has greatly reduced my pain. TAC's (Trigeminal Autonomic Cephalgias) include all Migraines, Cluster, Hemicrania Continua, SUNCT, and paroxysmal hemicrania. You can have one or more. Not sure which SCB BBC is mentioning.
I'd be very curious to find out! (I have TN2/ATN.)
It's unknown whether it would work for me (I also have Ehlers-Danlos Syndrome, which is likely the root cause of my TN -- I have nerve demyelinization in my hands and feet as well), because EDS creates a mutation in the way that sodium channels work, which is why so many of us are lidocaine-insensitive (it's literally like being injected with water.)
However, other -Caine-family anesthetics work on us (Marcaine, Carbocaine, and Septocaine, especially), and I believe that they are also sodium channel blockers (Marcaine definitely is), so it's certainly possible that the medication in question might help.
Does BBC Health News have a "contact" page? Would it be possible to find out which drug was used in the trial?
It does not say the name of the drug. ;((
Oxcarbazapine/Trileptal side effects can be low blood sodium - it blocks absorbtion or depletes it. Don’t know if that has anything to do with its effectiveness …but I wonder if it does.
I've been following this as well and I do believe Convergence Pharmaceuticals are in the final testing phase and will need to be reporting their results by a June 2014 deadline. Very curious to hear more...