Glad the clonazepam is giving you some relief Toby.
So I have been on clarazapam for a couple weeks now. It doesn't fix tremors but looking at my Fitbit sleep I went from waking or agitated sleep 15-25 times to one 3-5. I still tremor but now not near as many times. Very little side effects. I like the confidence enhanced feeling too. Not sure how long my liver will like it though. I am only on 2 mg per night. Once you take the pill you have about 1-2 hours then it is bed time.
I would like to see this thread resurrected. Some of us may be have further insights to share with others.
I am not sure if anyone will see this, but I have found a practical way to get to the end of this long thread without having to manually click through each page. Here's what works for me, at least in Chrome browser on a desktop computer. I simply type CTRL+F to search within the page, and search on the phrase "have an answer". This jumps to the bottom of the page, which automatically keeps triggering the page loading script until the thread is fully loaded. It takes a couple of minutes, but you don't have to watch it and can switch to other browser tabs. At that point the site functions normally without issue. If you're seeing this at all now, you're probably someone who has already clicked on "Notify me of new activity..."
Instead of "have an answer," alternatives that work are "notify," "respond," and "new activity."
I have been able to confirm that hooking the back of my neck up to a TENS machine enables me to instantly kill the internal vibrations with the click of a button.
I decided to try this because, as previously related, I can achieve that effect by tapping my fingers on the same area.
I decided to go to sleep with the machine attached so I could experiment during waking up, when the diaphragm area is vibrating the strongest. I did have vibrations in my legs as I lay down to sleep, as is fairly typical, and was able to kill those with the TENS. The vibration is occurring, I start and stop the pulse, and the vibrations have completely stopped. This was also the case in the morning with the chest tremor.
I don't know the frequency (it's a cheap machine), and don't think it matters. I don't know if it's the electricity per se, or the way in which it vibrates muscles (as the finger-tapping would), in turn presumably jolting a nerve (vagus?).
Given this interesting result, I'm going to run the machine periodically in case it serves to stimulate the vagus in the manner of possibly being therapeutic.
It's also got me focused more on the ways in which my vagus nerve might have become irritated, including postural issues leading to reflux (hernia?) and also chronic pressure in my neck, which bends to the right. It may be that the thing that unites us all is irritation to the vagus nerve, even though this could occur in multiple ways. I am still struck by the fact that Toby also experienced what I did with the vibrations being triggered by listening to a certain tone. I also want to just note here that a woman on this thread got over the vibrations after discovering a slipped vertebral disc in her neck, or something along those lines.
I just finished a book by a Dr Nemechek who has developed protocols to treat autonomic nervous system dysfunction. (I believe that the sleep vibrations are a symptom of ANS dysfunction). His book is primarily concerned with his protocol for autism, but it can also be applied to ANS dysfunction which he believes is due to systemic inflammation. The main parts of his protocol involve treating Small Intestinal Bacterial Overgrowth and lack of Omega-3 fatty acids. In certain cases he also prescribes transdermal vagus nerve stimulation. Many of the symptoms he describes resonated with me and I may look into seeing him at his clinic near Phoenix, AZ.
I highly recommend you get a copy of his book (it's a quick read) to see if anything resonates with you. Just do a search on Nemechek Protocol. You'll find his blog and a few videos. If you search hard enough, you can also find a description of his protocol. He also has a quick checkbox test to see if you fit the criteria for ANS dysfunction. I checked many of the boxes.
How is everyone? I am doing ok. Still no tremors, but experiencing memory issues. Sometimes my mouth doesn’t seem to work right. My face feels tight. Not sure if it is related.