Hi there,

As you know, my sister and I have been to Oxford to see a professor in SFN. We both received our letters today. They both say that he thinks we have a sodium ion channel mutation and has sent off a full gene panel for investigation. We should hear back in about 3 months. He mentioned in our letter that if a sodium mutation is found that we would be put on sodium channel blockers. Does anybody know which sodium channel blockers he is referring to ? He mentioned in my letter that more selective sodium channel blockers i.e. naV 1.7 are not going to be available on the NHS for another 5-10 years.

What sort of sodium channel blockers are available now, which would help somebody with a sodium channel mutation?

Thanks

The most common is lidocaine. Some people get infusions IV of this. We used to have poster from Scotland who did them.

CV Pharmacology | Sodium-Channel Blockers (Class I Antiarrhythmics)

An oral one is mexiletine which some on this forum have posted about. Its side effects on the stomach and esophagus however are severe and almost half who try it cannot tolerate it. It can actually
erode the tissues there.

Sodium channel blockers affect the heart and sometimes are used for arrhythmias and this is why the research is bogged down with these agents and slow. These drugs can cause sudden death and are only used today as a last resort.

THank you Mrs D - What about carbamazepine? Thanks

Carbamazepine is pretty toxic too. It has a long history going back decades for trigeminal neuralgia. But it has side effects on the bone marrow and electrolytes (hyponatremia). You can look it up on Google for more details. There is a poster here from a few years ago on Medications forum who was on this for a long time, and removed without a taper by his doctor, who had a horrific time with this drug.
https://www.neurotalk.org/members/18957.html
if you read some of his early posts you'll see what he went thru.

If the researchers can come up with sodium channel blocker, that is selective and spares the heart, that would be a good thing.
But it takes several years for the real side effects to become obvious sometimes, so who knows?

This is the poster who had the lidocaine infusions:
https://www.neurotalk.org/members/24499.html

Read her posts and see if your doctor would agree to those. Some of our RSD posters have had lidocaine infusions too.