UPDATE FROM COLM
Subject; Vagus Nerve Stimulation (VNS). Uses & experiences at 24/03/2019.
Using a VNS device (twice daily) for 28 Months, 2 Years and 4 Months. Hi All,
I am posting a long overdue update, apologies for the delay.
It is focused on my own medium/long term VNS experiment. I wanted to post this, being based on a meaningful if not scientific experimentation.
Below this immediate update also are my prior (2017) notes on using Vagus Nerve stimulation habits (bridged with other tactics I use daily) to reduce symptoms associated with POIS. My own symptoms were extreme for over 40 years. I have lived the life of a chronic POISer since 15 Y.O. or so, but now, through finding miscellaneous non-drug and more complementary approaches, I have experienced a lot of (specifically) POST orgasm symptom reduction.
I am now better able to live a normal life, and have much reduced impact from an orgasm or an ejaculation, to be precise.
Use of a 10 Point Scale. I am not as science-oriented as other long term forum contributors. SO, in summary below, I continue to use, as I had previously through 2017, a 10 Point Scale to track previous symptoms reduction.
What I post is NOT science nor validated, it is just my own experience. It is posted that it MAY help other POISers (interested in VNS) and so I can give an honest personal account to the forum, of how my health has improved this last 2 ½ years. This improvement has been achieved in spite of a lot of life and work stressors being present.
A 3 – 4 point overall improvement.
In general, I have sustained the health improvements of a 3-4 point improvements (on the scale of symptom reduction), as described in prior posts below. This improvement is related to symptom escalation experiences, post O/POIS.
I am very grateful for all improvements and the stability of health now experienced through the approaches I have learned, specifically this last 8+ years. Having spent 35 years before that trying crazy things, remedies of all types, I am pleased to see positive impacts now, albeit later in life. It was however worth NOT giving up, (so please don’t do that). I had felt like giving up many times along the journey of POIS.
This GREAT POIS Forum & Service Given.
I discovered this wonderful forum 6 years back, I’d never heard of POIS before it, I’d assumed I was just the unlucky one in the world. A belief for decades that I was actually the only person with this condition on the planet and of course not being able to share it with anyone. Trying to disappear from life for 3 days beyond O was a norm for decades). It was quite a lonely place to be as you all know. Google had not advanced so much until aftter 2010, to be able to (despite many searches online) find others who had this experience or who shared anything like we do here. As I lack that scientific nature, my experiments and there were many, were not hitting the mark, just causing a deep hopelessness.
I had never heard of a Vagus Nerve until Dr. Komisaruk’s & the Rurger’s study!
The Vagus Nerve.The Vagus Nerve element of this previous research attracted me, and I decided to experiment in a meaningful way with adding Vagus Nerve Stimulation (VNS) as an important element to what I was already trying to do, as described below and in some prior (user Colm & Colm_2 posts).
VNS & my Ultra Violet UV (Sunshine) Allergy. While my life was always negatively dominated (post O + POIS) by an array of physical, cognitive, mental & emotional impact for 3 days post O, I specifically want to mention one stand-out symptom of POIS for me.
Post O, for 40 years since my teen years (I am now a 60 YO), I had a severe Ultra Violet UV allergy to sun and strong light. I suffered with this since the onset of POIS in my teens, with (what became a clinically diagnosed “Photo Aggravated Seborrheic Dermatitis”). This dermatitis and also the related experience of feeling my whole system was under attack in sunlight. It was particularly heightened during POIS. I say an although this was likely automimmue it was like an ‘allergy’, not a sensitivity, because for 40 years plus, I could not be exposed to direct sunlight on my face or scalp without severely worsening POIS symptoms and having a skin flare up.
It was an autoimmune reaction, I believe, that has now been dampened by Vagus Nerve Stimulation. This I sense has lowered inflammatory markers in my system, lessened their effects over time, reducing the autoimmune reactions to sunlight and indeed strong lighting.
Based on adding Vagus Nerve stimulation added to my existing regime, I was in the Summer 2018 (quite incredibly for me) able to sit or lie in the sun, and take sunshine on my face for the first time since this became a chronic reaction at 18 years of age. Ironically too much sunshine is not something recommended now. Summer 2018 was however a novelty for me. Thankfully, I do not now need to go around wearing hats all the time from May to September. I am extremely grateful for the knowledge of VNS and understanding autoimmune and gut health approaches. There is much to gain here from the prior research, like Gut Microbiome researches and I also thank Quantum and others for their Pre and post O supplementation suggestions, which I believe have helped me also.
My experience may not be the same for others. After 28 Months, I can say, VNS is in my opinion NOT a cure for POIS itself. It has helped a lot however in a long term strategy. There is something interesting that it has positively affected the immune system of Sun reaction, when NO thing else ever did, exception being a UV desens machine used in a hospital for me 20 years back. However it didn't solve that issue, as VNS did.
Important Note. Others have their own versions of POIS, and I know one approach wont’t work for everyone, and for me anyway, drug therapy hasn’t been effective, hence my focus on committing to complementary approaches. With a very chronic decade(s) long version of POIS, this is worth considering alongside or without any drug approach.
SO, that is my positive update at March 2019, to be added to previous posts that I have re-listed below, if any person wants to read through. I know this is all a bit long, but perhaps a couple of guys on this path, could find it useful. This post is all just my own experimental approaches to better POIS symptom management.
If I have anything else to list of relevance to this in the future I will do so and post again.
Many thanks as ever to Demo, Quantum, Daveman, Stef, the new Mods Observer, CP2 and others who have much science to share & also the many other people who post far better data and their own experiences than I am able to.
NOTE, I am NOT recommending for everyone either VNS or an expensive VNS device, as it may not do anything for you and something else likely could work better for you at your stage in the POIS curve. However, everything is worth evaluating including VNS with other strategies. Building a habit with anything is key, and I was easily able to incorporate some techniques into my life and lifestyle. I believe that the merits of something like a commitment to VNS, is the gradual impact it has on lowering of DISease in our physiology, positively affecting immune system markers and helping our psychological states, thus promoting inner healing.
Work is ongoing in the world of Biosciences to research, validate & use Nerve stimulation rather than pure drug treatments for previously intractable and chronic conditions.
PS. Some updates on Autoimmune developments. Programme from 2017, Feinstein Institute www.bbc.co.uk/programmes/p0479jyy/playerExample of new discoveries www.feinsteininstitute.org/2019/01/newly-discovered-phagocyte-plays-role-autoimmune-disease/===========================================================
UPDATE @ 5th NOVEMBER 2017.
COLM’S ONE YEAR VNS TRIAL UPDATE.
BELOW IS MY PERSONAL EXPERIENCE IN 2017, AND NOT A RECOMMENDATION FOR OTHERS. PLEASE ALWAYS MAKE YOUR OWN INFORMED EVALUATION ON TREATMENTS FOR YOU.
I have continued with the use of the Nervana Vagus Nerve Stimulation device on a daily basis, for my wellbeing and POIS symptom reduction. This is a slightly delayed Nov 2017 update.
My usage of the device now spans one full year (@ Nov 2017) on a daily basis.
Below I am also going to re-share my six months previously published update, which for some reason fell off the forum posts shortly after its posting.
Vagus Nerve background.
The Vagus Nerve, as research is now proving, has an influence over potential healing in some autoimmune and inflammatory conditions. Possible characteristics that are also present with POIS as a syndrome.
Vagus nerve stimulation (VNS) benefits have been known about in medical circles for a long time. Specifically known in credible medical circles is the positive impact of using a targeted form of stimulation through an operative procedure where a neck implanted device is inserted, for treating epilepsy.
Other VNS implantable neck devices are currently being manufactured for research and selective treatment of other conditions like Arthritis, and with apparent success. Some information on these is at my prior posts in this thread.
This interesting documentary about Autoimmune conditions and their treatment you may find interesting. It may run in Firefox
https://www.bbc.co.uk/programmes/p0479jyy/player MY NOVEMBER 2017 1 YEAR USAGE UPDATED COMMENTS, FROM MY APRIL 2017 MEASURES BELOW.
What am I noticing overall? It still has NOT fully cured my POIS however…
1. My overall mood has remained very stable, generally and also within my 3 day POIS cascade of symptoms.
2. I am much calmer and would assess that on a 10 point scale, my (NOV 2017) POIS related depression and other symptoms continues to be maintained at a low level. It can go from a 5 out of 10 (in POIS) up to a wellness now of 8 out of 10 on some days, outside of POIS. This is a further improvement, which I am happy with. Overall I am looking at a 3/4 points (on a 10 points scale) of improvements in most symptoms over this one year extended period of use (along with my other methods). This has all been during some quite stressful life and work times. I notice I also deal with work stress a whole lot better this last 6 months in particular.
3. Perhaps the effect of the VNS stimulation is over time, and also that it is a reduction in dis-ease within our system and related to the way serotonin is re-up taken or perhaps the release of dopamine or endorphins through VNS. The blood brain axis may be impacted in a positive way also. Improvements for me has undoubtedly been assisted with a healthier gut approach also & with Buteyko breathing.
Honestly I can’t say for certain if without adopting the Gut healing & Buteyko approaches would I have had this level of improvement, I honestly don’t know, but I think I could. Being late 50's also means I have naturally less time in POIS as I can also refrain from O if I need to. It MAY have helped wit healing, but I don't think it was the main contributor.
4. I sustain my weight, and while eating less food. I don’t comfort eat now at all.
5. My friends and family notice that that I am in good form most days.
6. I don't need now any more than six hour night time, sleep. I wake early ready for the day. Four years back, I felt awful most mornings.
BELOW FROM MY 6 MONTH UPDATE, POSTED APRIL 2017.
Report On My Six Month Trial with VNS, Oct 2017 to April 2017.
I believe the introduction for us to the world of the Vagus Nerve in our study has a legacy with some potential.
I for one had never heard of the Vagus Nerve 3 years ago, but am pleased that I did (as a result of our study)!
The original research study theory of (some of our) POIS symptomology as having its roots as a case of “Vagal Dystonia”, may have been somewhat on track I believe, and may have credibility as one key aspect (for some people and for the cognitive, mental and emotional aspects) of our healing from POIS.
As some know here, I share an almost lifelong POIS 40 year challenge with Quantum, Demo and others.
Been there, done that over decades with all the tried this/tried that, the false hopes and the pipe dreams and delusions around what could help stop the negative effects from sex. Spent thousands, wasted thousands of hours trying to solve this absolutely horrible syndrome, and doing this in silence made it worse, until I found this great forum and the great people involved, that was about four years back. Like many of you, I found that knowing you aren't the only one with this condition is helpful. Spent decades believing no one else had this, which is very isolating.
Reading the information at the site also allowed me, with a non-researchers mind, to try different things. In particular, as I personally value a more holistic approach to symptom reduction, rather than drug therapy approach, I initially zoned in on (with good effect) to a gut-healing approach along with keeping fit. Having met and worked with a great nutritionist almost 4 years back was a good start, as I had gut issues that were contributing to the terrible cascading effects after an O. Formal gut analysis showed issues in my report from a gut analysis clinic.
Information here helped, specifically the supplements discussions, like Quantum's pre and post O supplements. Matcha high quality green tea also a great addition in recovery for me.
My main POIS symptoms outlined below had included for a long time up to 3 years ago, and many below were severe, specifically within POIS.
Physical: Headaches, Seborrheic dermatitis, severe allergy to direct sunlight/UVA and sensitivity to bright light, chronic sinusitis & histamine issues, difficulty with handwriting. Also had a test that showed food allergy to milk and a microbial imbalance.
Cognitive & Mental: Brain fog, lack of clarity, stressful thinking.
Emotional: Depression, social phobia, irritability & panic attacks.
SO, to the Vagus approach & my VNS six month trial.
With some evolving knowledge of the Vagus nerve and the potential for using it in a positive manner as an anti-dote to above and to this possible Autoimmune/ Inflammatory syndrome, I have trialled this system.
Please note in the last 3 years, that a gut healing approach and also daily practice of the Buteyko Nasal breathing process, along with exercise are extra pieces in my own healing jigsaw. I recommend you evaluate Buteyko, specifically for sports enthusiasts or those with respirator issues. The book
www.oxygenadvantage.com is cool for ports people to evaluate Buteyko as a potential tool kit. It (the nasal breathing volume & sleep techniques of buteyko) helped me reduce my dependency on cortisone nasal sprays by 75% and has given me fitness on long cycling spins and running, well beyond my age expectations. Am now fit well beyond my years.
This however (@ April 2017) is a review of my experience thus far with Vagus Nerve Stimulation, which I have experimented with in a disciplined manner since six months back (Oct 2016), after I received what is called the Nervana Vagus Nerve Stimulator, as mentioned also at POIS forum.
I have used this VNS on a daily basis and for at least 2 daily sessions, and sometimes 3 * 30/45 minute sessions per day.
My own personal experiences are positive, but I am not advocating that anyone else purchases this product. It is expensive and may or may not help others. I don’t know. I do recommend it worth evaluating as part of your healing approach however, if you think you have chronic symptoms that are caused by dis-ease in your physiology and brain from POIS.
If you decide to invest in a Nervana VNS, please be careful and start slowly with usage and give it at least six months of commitment & efforts, to properly evaluate its impact on your POIS symptoms.
As this is a product that can be used while sitting, relaxing, just listening to music or indeed "on the go" carrying on with day to day tasks - excluding operating anything mechanical - it isn't very difficult to use or test it consistently.
Something like practicing a consistent form of meditation in my opinion requires more discipline than using this method of relaxation.
What is the Nervana Vagus Nerve Stimulator?
It is a 2016 product launched, commercially available device that emits a Vagus Nerve signal via a specially designed ear piece, making a stimulatory connection to the nerve, through the left ear canal.
It is intended to generally stimulate the Vagus Nerve, which is a Nerve that interfaces with parasympathetic control of the heart, lungs and somewhat controlling and influencing the digestive tract in a positive manner.
My impressions pre-usage.
I had seen a lot of hype and over-the-top-marketing & hype of this Nervana system, including a slot on the Doctors TV which was laughable. The founders and designers however seemed credible. I was however VERY sceptical about the product initially, but with the usual ‘will try anything’, I ploughed ahead and invested. The various claims about its supposed immediate positive impacts were not experience by myself, but longer term I will say that they have been.
My own overall usage experience.
On receiving the device, it took me some time in online research of various vendor videos and reading the accompanying instructions to be certain of how to use it. It is a little cumbersome at first to use correctly. I was however motivated to do so and continue to try it. It helped that I enjoy music, and the VNS works best while listening to up-tempo music with a beat and indeed soft rock music, the left earpiece faithfully doing its business. There are also additional suggestions available on the best type of music to use it with.
If music isn’t your thing, it also has a setting for what is called an "Ambient mode" which enables you to receive the signal while going about activity in your own environment, without using music, still getting the signal.
Note, there are various ear bud sizes that come with the system, and it takes a bit of time to find the best fit, as without the correct fit, you don’t get the tingle.
Additionally you need to add some saline or salt water spray (dispenser provided) to the earbud to ensure it makes a proper connection into the ear canal entry so it provides the appropriate stimulation.
In the first few weeks I went with a very low "calibration" of the VNS signal, as with POIS type depression at the time, I was not going to take any risk in making my symptoms worse. There is a calibration dial on the front of the device to set from 1 – 25 in strength.
I always wanted to ensure I was using the device correctly and safely.
During this time, curiously as I googled more about it and the reviews, I had seen online that quite a few people were sending their device back after only a couple of weeks. Am not surprised as the marketing hype had originally alluded to euphoria after a few listens. That’s BS and not realistic. Initially I found some minor adverse effect in using the VNS, so took it very easy, but am happy that I persisted with its use. I also would have sent it back after a few weeks but I knew my situation was chronic and multi-faceted, so I was interested to proceed and give a fair trial of VNS alongside my other regime.
Many people complained that the music quality when docking the system through their phone / music device was very poor. It's ok not that bad. However, there is a way around to full sound and bass quality that is gained by buying better quality large headphones that fit over your ears, while keeping the same left VNS signal earbud in place with the headphones over them. There’s extra things you can buy to enhance the music experience.
After 3/4 months of use, in particular I was noticing the positive impact on my parasympathetic nervous system and lowering of stress levels. I have found the tool initially had a slower but impactful build to definitely lowering my POIS Symptoms of decades standing.
Over the six months (to April 20-7), I had increased the intensity of the signal I used, to where I am comfortably able to use it at full throttle now 2/3 times a day now and will continue to do so.
I used meditate for many years which didn’t really help. For me however, I find this VNS is having a much better effect for me than meditation.
@ 6 MONTHS, APRIL 2017: What am I noticing overall? It has NOT cured my POIS however…
1. My overall mood has stabilised, generally and also within the 3 day POIS symptoms.
2. I am calmer and would assess that on a 10 point scale, my POIS related depression, which 6 months ago could go as low as a 2 in the POIS three day cycle and up to a max of 4.5 outside of pois, is now I am happy to report consistently at a lowest
score of 4 within POIS phase and up to a 7/10 on some days, outside of POIS. This is a good improvement, which I am happy with. Overall am looking at a 2/3 point (on a 10 points scale) improvement in most symptoms, over this six month period.
3. Perhaps the effect of the VNS is that it is related to the way serotonin is re-up taken or perhaps the release of dopamine or endorphins through VNS, allied with a healthier gut approach & Buteyko breathing, I can now even tolerate a couple of alcoholic drinks, without a depressive adverse effect which I always had with alcohol for decades. Honestly I can’t say if without the Gut healing & Buteyko would I have had this improvement, I honestly don’t know, but I think I could.
4. I have started to put on weight for the first time in decades, while eating less food. I don’t comfort east as much.
5. My family members and friends have been remarking on occasion that I look fit/well, something I haven't heard said in decades, because in truth I know that I didn't look healthy.
6. I can sleep through a 7 hour night time, whereas before I would always wake in the middle of the night.
7. I feel quite well in the morning when I awake, had gradually improved over the last 2 years. I used feel like I had been run over by a bus on awaking firth thing, for decades. As if a lot of normal functioning just wasn’t working. I was like many of you, depleted.
All of this improvement above btw, when I am very busy workwise, but seem not to be getting over-stressed in the manner I would have done in the past, and with much less work pressure.
Note, I recently explained about this item and the use of the device to my GP, and the positive experiences I was having. He was very interested, and encouraged me to keep using it.
In closing, I hope this hasn’t been too long a ‘story’. I just want to emphasise again that I am recounting my own personal experience and belief that the device has contributed to a significant reduction in my symptoms. It may or may not for others. As I say, I don’t know if it is a combination of things I am doing.
Anyway, I am going to keep doing what I am doing, and can report back at ONE YEAR (OCT/NOV 2017) if I keep finding progress. I will also keep reading all the great inputs on our support forum and learning more.
Wishing you all good health in the future and in support of the next steps in fighting the good fight against the beast of POIS.
Best regards,
Colm