Author Topic: My report as a participant in the Rutgers research study (without my results)  (Read 13074 times)

Nightingale

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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
« Last Edit: August 21, 2015, 10:12:03 PM by Nightingale »
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Limejuice

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Thanks Nightingale! When do you expect the 3rd phase to begin/end? Is there a 4th phase of more?

Nightingale

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Hi Limejuice,

I believe there is to be some decision made about if there is going to be a stage where we will orgasm while in fMRI with no vagus stimulator. So that would make stage 4 fMRI with vagus nerve simulation with orgasm. A separate stage may not be necessary, but it has yet to be determined.

As far as when I expect the next stage to begin: it's up to how soon I can return to Newark. I have built a strong repore with the team, and they trust me most to pilot each stage first. That being said, I have always made beating POIS a priority in my life and I am already planning to return to the lab. I may be able to get back to the lab mid September, but it would be for more stage 2 piloting. The protocol on how best to use the VNS has yet to be reached, so I would repeat stage 2 with some changes to how long and how frequently I use the VNS. I understand that time with the fMRI has to be fit into a busy schedule, so I we will also be scheduling time as soon as the team feels a good enough job has been done with phase 2.

I will keep everyone up to speed as best I can!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Prancer

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Ah, so happy and excited to read this! Thanks a lot for letting us know about it dear Nightingale. Great details, well explained, and good idea about not biasing the results.
It's really great, and this is a good reminder that real progress is happening all the time. So don't fret POISers, homies, buddies! This is the real deal, and we will find a real fix, the proper way, for this damn aggravating illness.

Again, thanks Nightingale & keep us posted! - prancer (excited)

Limejuice

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Nightingale, do you know who the other participants are? And how many are being tested?

Colm

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Appreciated Nightingale. Well done ! Looking forward to future updates on the study.

Limejuice

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Sorry for the questions but just two more: do the Dr's believe that a flush (niacin) causes VNS? And do niacin flushes help reduce your symptoms?

Thanks!!!!

Macster

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Hi Nightingale,

It's nice to hear from someone who's directly involved in the study! I was wondering how many participants are there and if they are planning on getting more later. Also, how far from Newark do they take the participants?

Macster
Symptoms since I'm 15 y o, hair loss, muscle twitches, brain fog, anxiety, low confidence, stuffy nose, itchy eyes and skin, sensitive to temperature change, loud heartbeat. I currently use 5-htp and SAM-e.

Nightingale

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Ok so to address the two main questions of other people in the study, and niacin/other POIS theories and this study:

I know that there are a couple other guys in the study, and that the Rutgers team will keep it that way for now because those guys and myself have easy access to the lab. The protocol has to be polished before people from further away should be invited. To get sick, come back for multiple phases, etc. the team needs to use us a the pilot "guinea pigs". I believe the phase with the most questions is Phase 2, the introduction of the vagus stim. That's where the study is now, so it's important stuff

On the issue of what the team thinks of other theories: I have had discussions with Dr. Komisaruk and Dr. Wise about the various theories, treatments and such that we have come up with on our own. They are listening with open minds. There is a problem though if we were to add more to the study. I asked about blood draws, to check levels of various things in my blood before and after orgasm. Dr. K thought it would be very interesting, but it would have to be applied for through the Internal Review Board (IRB), which takes a long time. I personally feel it's best to stick to the vagus nerve stim hypothesis and test that, or else this will take even longer. The next best thing to do would be to fill out the survey that Blues Brother and I created. The team has gathered this data and it can be included in the final publication so that the next research team gets access to the data too.

I have gotten benefit from niacin, yes. The mechanism of why would make for an interesting study
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Limejuice

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Thank you Nightingale!!!! Since this study began 2 years ago, this is the most information I've received and thank you for sharing!

Pianist

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Dear nightingale, thank you so much for telling!)))

mellivora

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Thanks Nightingale. Naturally there are some details you must not tell us but it really makes a difference to be informed what stage things are at. What you have told us is helpful :)

demografx

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Thank you, Nightingale!!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

DrNanWise

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Dear Folks,
Nightingale did a wonderfully articulate job of communicating about what we are doing in the lab.  We are going to need to collect more data from others for phases 1 and 2 as he described before we do the fMRI component.
Hang in there all,

Dr Nan Wise

Hoping

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Re: My report as a participant in the Rutgers research study (without my results)
« Reply #14 on: September 03, 2015, 05:00:47 PM »
Thanks for the excellent update! Please keep us posted on your progress. This is all very exciting!
Experienced POIS since 2002.
My symptoms include: brain fog, depression, physical and mental fatigue, memory problems, social anxiety, concentration problems, myalgia, inflammation.

Habibou

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Re: My report as a participant in the Rutgers research study (without my results)
« Reply #15 on: September 10, 2015, 05:13:04 PM »
Thanks a lot ! It is always better to know what we did, what we do and where we are going :)
About the VNS, do you know the average price of it and if it is something that can be prescribed easily?
Did you use it only during the effort or a long period during the day?
« Last Edit: April 05, 2016, 02:58:33 PM by Habibou »
Brain fog 90%  + tired all the time ,sport intolerance, fast heartbeat, colon inflammation

Hoping

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Still waiting for another Nightingale update. Got excited with his original update, and can't wait to hear about the next phase(s). We're hungry for more info Nightingale! Even just a tiny morsel of information to tease us with again. Must. Hear. More! :)

Here, here! :)
Experienced POIS since 2002.
My symptoms include: brain fog, depression, physical and mental fatigue, memory problems, social anxiety, concentration problems, myalgia, inflammation.

demografx

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Still waiting for another Nightingale update. Got excited with his original update, and can't wait to hear about the next phase(s). We're hungry for more info Nightingale! Even just a tiny morsel of information to tease us with again. Must. Hear. More! :)

Here, here! :)
Here, here! :)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business