Dear POIS community,
I want to tell you about what is happening in the Rutgers research study that is involved in testing the theory that POIS is a case of vagal nerve dystonia. I have been the pilot participant, doing every step of the study first. Thus, it has been a process of working with the research team as to how to go about this research in a way that will be most applicable and potentially most effective for POIS sufferers. Dr. Komisaruk (and practically the whole world) has never seen anyone suffering from POIS until recently, and much of the decisions about the research protocol has been a collaborative effort between myself and Dr. K and Dr. Nan Wise. They firmly believe in the idea that we, having suffered from this rare disease for so long, know a lot that they do not. This has made it a pleasure to work with the team, as I feel they understand how personal and difficult this illness can be to experience and describe to others.
Now, what is happening in the lab and what is the protocol?:
Phase 1 of the protocol is quite simply getting sick while a device, called a heart rate variability monitor, records heart rate data. I was asked to place electrodes on my chest (one below my collar bone on the right side and the other below my heart on the ribcage) and then the device snaps onto the electrodes and begins recording data. It's a neat device, not particularly complicated but it does it's job very well, and is small and comfortable to wear. It has a USB plug that is part of its design that, once I was done with Phase 1 Dr. K could take the device, plug it into his computer and download the data it had been collecting. Neat, efficient and easy.
Why is the team measuring heart rate variability? It is an indirect indicator of the state/tone of the vagus nerve. If the nerve is not functioning well, you will expect to see little variance in heart rate, but if it is healthier than you will see increased variance in heart rate. So for example, if your heart rate is an average 80 beats per minute (bpm) as you are walking, someone with an "unhealthy" vagus nerve will not experience much change from close to 80 bpm. Someone with a "healthy" vagus nerve who's average walking heart rate is 80 bpm will experience heart rates that change from 80 bpm more often. This shows your nerve is more "flexible" in a sense, and that causes your heart rate to be more variable. And heart rate variability is associated with well being (good feelings!) and that is why Dr. K wants to measure it.
How come he is using this method? Even though it is an indirect indication of change in vagus nerve activity, it is easy to determine. The direct and more accurate way is by fMRI scans of the brain, and that will be part of a later phase of the study.
So, back to Phase 1 and what the protocol is: once you have the heart rate variability (HRV) monitor on, then you follow a timeline. It includes resting, walking up and down stairs, resting some more, then the self-stimulation (masturbation) begins. Again, the idea here is to get sick. This is so that there is a "baseline", an example of how your HRV looks like with an ejaculation with no "tricks" to reduce symptoms (like niacin, anti-inflammatories, etc.) This baseline will be used to compare with data from later phases when the vagus nerve stimulator is being used. Once you orgasm, you start to take notes on how you are feeling. Also there is a symptom chart where I rate the severity of my symptoms. I also walked up and down stairs again. I filled the symptom chart out many times during Phase 1, before we even got started all through the end.
Once I had spent a few hours at the Rutgers lab, I was taken to where I was staying (I have family who lives only 15 minutes from Rutgers Newark). There, I continued to take notes and rate my symptoms. This went on through the night. And the whole time I was still wearing the HRV monitor, and it was recording my heart rate the entire time. I eventually went to bed (still wearing the monitor). The next morning, again I made notes and rated symptoms. Dr. Wise picked me up from my family's house and I dropped off the HRV monitor at Rutgers for Dr. K to download the data.
That was the end of my Phase 1
I have just completed Phase 2 as I am writing to you today. This phase involves the vagus nerve stimulator (VNS). Like maybe you have seen, an earpiece fits on your ear and electrodes touch a specific part of the ear where it can stimulate the vagus nerve. Phase 2 protocol is essentially a repeat of Phase 1 protocol but with the use of the VNS. While wearing the heart rate variability monitor, I used the VNS before orgasm to see what it did to my variability. I then went to my family's home and there I orgasmed and used the VNS. I was given flexibility as to how long and how often I would use the VNS, with some guidelines. I have finished using the device and Dr. K has my HRV data from this phase.
I do not know exactly what the next phase will consist of. I will get in contact with Dr. K about this and let you all know what the protocol will be.
I can answer your questions about what is going on in the study, but I can't tell you HOW I am doing in the study. This is for very important reasons: if you were to know how I am doing in response to the vagus nerve stimulator, and you were to use it later in the study, then you will come in with an idea already about what it is going to do. I came into the study having no idea what it was going to do for my POIS symptoms, and it should be this way for everyone in the study. There are many things that could change in the study if I gave you an impression of what to expect. The point is to avoid the "placebo effect", which can alter your perception of how a treatment may be affecting you. This is no good in a research study that is trying to find out in the best possible way if VNS will help people with POIS.
So, please keep that in mind, but don't be afraid to ask me about other things related to the study
Best,
Nightingale
