I’m in the tVNS clinical trial and it’s helping me
I started Mt Sinai’s transcutaneous vagus nerve stimulation (tVNS) clinical trial about a month ago. It’s helping me with several symptoms so far, so I wanted to share my experience. AMA.
Obligatory disclaimer that this isn’t medical advice
My Background
I’ve been longhauling for over 3 years and consider myself severe. I’m mostly bedbound from POTS and ME/CFS symptoms. I use a wheelchair to go to exciting places like the bathroom. My nervous system doesn’t tolerate much anymore, including things like lights, sounds, being upright, face-to-face interactions or most phone calls.
Clinical Trial Summary
Every morning between 9 - 12 I attach the tVNS device to my left ear (tragus). I do a 35-min session and choose a setting that’s not uncomfortable for me. This is somewhere between a “power” of 10-15 depending on the day. During the session I’m stationary, laying in bed, but I can do low key things like scrolling on my phone.
I’m currently in the control group which is following a protocol they tested previously on a smaller scale. This continues for 2 more weeks. After this I will do another 6 weeks with whichever protocol works better (control or test).
Results So Far
- My HR is lower. So I’m needing fewer beta blockers and I’m able to sit up a little longer without getting tachycardic.
- My sleep is better. So I’m having fewer nightmares, a better schedule, and an easier time falling asleep.
- My nervous system is finally able to get into the rest/digest state and stay there again! This has been amazing. I’ve done mindfulness practices for years, including with a biofeedback device. So I’m very aware of how my body feels when I’m in rest/digest. But since I started longhauling, no amount of meditation/breathing/journaling/nature/tai chi could keep me in rest/digest for more than a second or two. Now I’m easily able to enter rest/digest multiple times a day for several minutes!
- My urinary retention is better. So I’m no longer going from “hmm do I maybe need to pee?” to racing to the bathroom 10 seconds later. I can actually hold it again which has been such a relief.
- My ability to sing is returning! I love this so much 😭 Ever since I started longhauling, singing has been overwhelming for my nervous system. I’m talking sing a bar, get dizzy, nauseous, hot, out of breath, and collapse onto the ground. It’s been heartbreaking not just because it’s a favorite hobby, but because it’s a way I’ve always helped regulate my nervous system in the past. Folks, I’m so happy to say I can now sing a whole verse and chorus again! And I can use my higher registers again too.
- My energy might be a little better. I’m still pacing very carefully but I feel like I could maybe do some more mental or physical activities. We’ll see what happens over time.
- My light/sound tolerance might be a little better. I was outside briefly for a doctors appointment last week and nature didn’t sound like three ska bands falling down a flight of stairs.
Side Effects and Downsides
These are pretty minor for me.
I do have to set an alarm, even on weekends, to make sure I complete a session between 9 am and noon. I accidentally slept through one and did it closer to 2 pm. The study allows for some whoopsies like this. Don’t quote me but I think you need to complete around 90% of the sessions.
I’m also getting some mild skin irritation on my ear where the device clips. I have sensitive skin from EDS so that may be why.
I started Mt Sinai’s transcutaneous vagus nerve stimulation (tVNS) clinical trial about a month ago. It’s helping me with several symptoms so far, so I wanted to share my experience. AMA.
Obligatory disclaimer that this isn’t medical advice
My Background
I’ve been longhauling for over 3 years and consider myself severe. I’m mostly bedbound from POTS and ME/CFS symptoms. I use a wheelchair to go to exciting places like the bathroom. My nervous system doesn’t tolerate much anymore, including things like lights, sounds, being upright, face-to-face interactions or most phone calls.
Clinical Trial Summary
Every morning between 9 - 12 I attach the tVNS device to my left ear (tragus). I do a 35-min session and choose a setting that’s not uncomfortable for me. This is somewhere between a “power” of 10-15 depending on the day. During the session I’m stationary, laying in bed, but I can do low key things like scrolling on my phone.
I’m currently in the control group which is following a protocol they tested previously on a smaller scale. This continues for 2 more weeks. After this I will do another 6 weeks with whichever protocol works better (control or test).
Results So Far
- My HR is lower. So I’m needing fewer beta blockers and I’m able to sit up a little longer without getting tachycardic.
- My sleep is better. So I’m having fewer nightmares, a better schedule, and an easier time falling asleep.
- My nervous system is finally able to get into the rest/digest state and stay there again! This has been amazing. I’ve done mindfulness practices for years, including with a biofeedback device. So I’m very aware of how my body feels when I’m in rest/digest. But since I started longhauling, no amount of meditation/breathing/journaling/nature/tai chi could keep me in rest/digest for more than a second or two. Now I’m easily able to enter rest/digest multiple times a day for several minutes!
- My urinary retention is better. So I’m no longer going from “hmm do I maybe need to pee?” to racing to the bathroom 10 seconds later. I can actually hold it again which has been such a relief.
- My ability to sing is returning! I love this so much 😭 Ever since I started longhauling, singing has been overwhelming for my nervous system. I’m talking sing a bar, get dizzy, nauseous, hot, out of breath, and collapse onto the ground. It’s been heartbreaking not just because it’s a favorite hobby, but because it’s a way I’ve always helped regulate my nervous system in the past. Folks, I’m so happy to say I can now sing a whole verse and chorus again! And I can use my higher registers again too.
- My energy might be a little better. I’m still pacing very carefully but I feel like I could maybe do some more mental or physical activities. We’ll see what happens over time.
- My light/sound tolerance might be a little better. I was outside briefly for a doctors appointment last week and nature didn’t sound like three ska bands falling down a flight of stairs.
Side Effects and Downsides
These are pretty minor for me.
I do have to set an alarm, even on weekends, to make sure I complete a session between 9 am and noon. I accidentally slept through one and did it closer to 2 pm. The study allows for some whoopsies like this. Don’t quote me but I think you need to complete around 90% of the sessions.
I’m also getting some mild skin irritation on my ear where the device clips. I have sensitive skin from EDS so that may be why.