Vagus Nerve Stimulation

[Hutan]

A trial protocol for a study of tVNS on post-cancer fatigue:
Effect of transcutaneous auricular vagal nerve stimulation on the fatigue syndrome in patients with gastrointestinal cancers — FATIVA: a randomized

 

[lunarainbows]

I spoke to the headache nurse and they’re going to send me out a Gammacore (vagus nerve stimulation device), as I have cluster headaches and I found it increasingly difficult to tolerate the other treatments. It’s only licensed on the NHS for cluster headache, but she said it will help with my migraine symptoms too. I’ll report back here if it helps me or not, and if it helps with any of my other systemic symptoms like PoTS etc (I hope so.. but not getting my hopes too high as I know there’s no miracle treatment). She said the Gammacore / vagus nerve devices do help some people (off license) with gastroparesis, PoTS etc too.

 

[Trish]

Hi Luna, good to hear from you. I hope the Gammacore helps.

 

[Sasha]

I spoke to the headache nurse and they’re going to send me out a Gammacore (vagus nerve stimulation device), as I have cluster headaches and I found it increasingly difficult to tolerate the other treatments. It’s only licensed on the NHS for cluster headache, but she said it will help with my migraine symptoms too. I’ll report back here if it helps me or not, and if it helps with any of my other systemic symptoms like PoTS etc (I hope so.. but not getting my hopes too high as I know there’s no miracle treatment). She said the Gammacore / vagus nerve devices do help some people (off license) with gastroparesis, PoTS etc too.

Hi @lunarainbows - just wondering how you got on with this?

 

[Sasha]

Just wondering generally how this vagus nerve stuff is looking, because someone just mentioned to me a couple of local PwME who have have had 'amazing results' from some sort of vagus-related therapy but have things moved on beyond anecdote to trials yet?

 

[lunarainbows]

Hi @lunarainbows - just wondering how you got on with this?

I haven’t had any amazing results. It’s helped my cluster headache a little - maybe 15 to 20%, so far no improvement in migraine, or in any other symptoms. I don’t do it frequently enough though, and sometimes even skip days - because the vagus nerve stimulation device is causing me pain! You’re allowed to adjust the intensity of the device, but it still has to be set at a level high enough that it actually works (and you can tell it’s working by noticing a “lip pull” on one side - almost like a stroke. That’s the sign of it working). So I need to set it at a certain level - and at that level, the electric current is causing pain, especially after a few repetitions (and you do need to repeat it often throughout the day). So because of this pain, I cannot really use the gammacore properly. (I’m surprised no one else has ever mentioned this side effect before). Nevertheless, I’m still persevering because my PoTS doctor also said it could help with PoTS, so I’m keen to keep trying..

They’ve approved me to keep trying it for another 3 months (and will keep approving it as long as it helps the headache I think).

But it’s not an amazing miracle cure for me, so far, for sure.

 

[Sasha]

Thanks, @lunarainbows. I'm sorry you've not had better success. I had to stop using an electrical stimulation device for migraines because it put me in agony, so I can sympathise.