POISCENTER
General Category => POIS Research => Topic started by: Daveman on January 02, 2014, 06:59:18 AM
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All applicants for our grant had to submit complete and detailed plans of their research program. This means that each of the programs had a solid direction and methodology. So it would be difficult, if not impossible that the Doctor would be in a position to change his plan, however, our input may be able to help him fine tune his procedure, or help him to find specific areas that will permit him to zoom in with better capability.
The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things.
fMRIs can see changes in action, especially in the brain, so lets have a look at these subjects on internet, and see if there's anything that we can highlight that may shed deeper light on what's happening to us during the POIS process.
We'll make up a list and see what we can do about getting some of the information to him.
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The question that immediately sprung to my mind when we were told the main avenue of research would be fMRI was: Can fMRI be useful in the detection of auto-immune responses and has it ever contributed to a "cure" (loose term) of an auto-immune disease.
I would like to ask: can we draw a line under and be clear about the Skin prick test person types and determine allergic/auto-immune type 1 and 4 responses ( as Walldinger theorised) through fMRI.
I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, Testosterone, Progesterone, and persons who have been desensitised to semen.
I expect these are obvious questions but just wanted to be sure!
Thanks - FloppyB
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The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things
Wow, this is exactly what I was expecting. No joke!
I have had so many problems in my life that implicated the vagus nerve that I could not help but feel that it would have some connection to POIS.
First, a list, so that the connection between my health challenges and the nervous system are apparent, then a longer story to explain these after:
Current age: 27
- Major depression, treatment resistant for many years (now under control)
- Mania/psychosis, triggered after taking Provigil, and still something I need medication for
- Poor tolerance of the majority of psychiatric and neurologic meds I've taken (increased nervousness and anxiety, akathesia, dysphoria, depersonalization, or feeling strange weakness, and more, and more)
- Low, poor affect. Even when not feeling depressed, I seem to not display much emotion. I also fail to feel drives, like when I should be feeling angry I don't feel much
- Historically very sensitive to emotional distress, very fearful and upset as a child. Socially anxious as a teen and adult
- Infrequent bowel movements/long urine retention most of my life
- Digestive diseases - dysbiosis and possible new diagnosis of Small Intestine Bacterial Overgrowth, candida infection (suspected)
- Poor mobility at certain areas of my mouth/face, and speech problems that persist to adulthood - suggestive of herpesvirus impacting nerves in my face? Bell's palsy-like?
- Pectus excavatum/hypermobile joints/stria (stretch marks) - I understand connective tissue disorders can contribute to neuro disease like disautonomia. I can't help but wonder that if I had issues with my vagus nerve that my chest wouldn't grow right
- Bizarre sleep paralysis/would wake up startled with the feeling like I am passing away, yet I am unable to perform a typical "gasping reflex" to resolve the feeling of suffocating. Would happen after having alcohol or also antihistamines (benadryl) or relaxants
- Vascular issues - heart rate on the low end (nurses keep asking me if I'm an athlete, nope!) Reynaud's syndrome (poor circulation in my periphery), fluctuating blood pressure (more rare), often large difference between systolic and diastolic pressures. Fairly bad orthostatic hypotension when I was on SSRIs/SSNRIs
- Metabolic syndrome at age 24, despite only having been overweight for 1.5 years, but while on fairly high amounts of antipsychotics (I no longer have this condition after losing weight and reducing meds)
- Good response to B vitamin supplementation (with of course niacin)
- Certain textures (or even the thought of them) make me shiver down my spine
I personally have had what the doctors were only able to vaguely describe as a "vasovagal event" after taking the "wakefulness promoting agent" Provigil. I was also on the antidepressant Cymbalta which is known for its activating properties. I had one of the most bizarre and terrifying feeling of what seemed like hot liquid spilling, beginning from the base of my skull to throughout my body. It crept down my back, and spread to the center of my torso, where the vagus nerve begins. I was shaking, panicked, and sweating an unbelievable amount. I felt like my insides were being electrocuted. I thought I might die. I was in a psychiatric hospital at the time (luckily), so I had professionals observing me during this time. I paced back and forth until my legs gave out from under me. This was what the doctor latched onto when he thought I had a vasovagal event (essentially a type of fainting), but I never once lost consciousness. I unfortunately remember the entire torturing episode. It lasted about 15 minutes maybe.
One week later I had my first ever psychotic episode, and my journey to recovery took a turn for the worse. I was put on antipsychotics, but I was so extraordinarily sensitive to so many drugs I ended up staying at the hospital 3 months before they found the right drugs for me and felt comfortable letting me go.
I started my battle with depression the exact time POIS started. I was a nervous, shy kid with a slight speech impediment but a high acheiver. Once I hit 13, my life started to go downhill. I always wondered about vagus nerve stimulation, as I new it was being tried for treatment resistant depression, and I sure fit that category until I 1) I had Electro-Convulsive Therapy and 2) I stopped taking antidepressants and instead relied on lithium and 3) started taking clonazipam (Klonipn). I really can't function without it
Another reason I thought the vagus nerve is digestion. I have been fighting gut problems for close to three years now, and they often begin with faulty nervous function. Poor nervous system stimulation to the gut (vagus nerve participates in this from my memory) can lead to low "motility" in the gut, allowing excess bacteria and fungus an opportunity to take hold. I had some of my best times in the recent past when I was eating low to no sugar diets and after taking antifungals. I recently relapsed, and my gut hurts. I am in the process of finding out if I have a newer diagnosis, called Small Intestine Bacterial Overgrowth (SIBO). Just took a hydrogen breath test. Found out I am lactose intolerant (I didnt used to be) and I am waiting on my gastroenterologist's interpretation on SIBO.
Classes of meds and my reactions to them:
- Mood stabilzers - Extreme intolerance to Lamictal and Trileptal. Extreme dysphoria. Almost killed myself on Trileptal
- Antidepressants - Poor response. Treatment resistant. Unsettling dreams, and nervousness on SNRIs. In combination with Provigil, Cymbalta probably contributed to my development of schizo-affective disorder
- Benzodiazepines - Really can't function without them, I get too edgy. Respond excellently to Klonapin
- Sleep meds - Not effective. Did not help me sleep, Provigil made me have the terrible reaction I detailed above and led to psychosis/schizo-affective disorder
- Dopamine agonists - made me sleepy and at worst slightly catatonic. I also had irritability with Wellbutrin
- Beta blocker - made me lethargic and felt weak
- Muscle relaxants - dangerous. Would feel very weak
- IV general anesthetics - had too many fasciculations (spasms) with the first anesthetic they tried on me for my electro-convulsive therapy (propofol?), had to switch to etomidate (typically reserved for emergency situations or sick patients because it produces fewer adverse physiological effects)
I've taken so many medications, I'll probably remember more later and have to update this. I actually am hoping that a disordered vagus nerve or other disordered nerve is our problem, as treatments like nerve stimulation already exist! See http://en.wikipedia.org/wiki/Vagus_nerve_stimulation (http://en.wikipedia.org/wiki/Vagus_nerve_stimulation)
A question: why is my second consecutive orgasm so intense and so much more debilitating? My sensation of pleasure goes through the roof, then it feels my brain falls to the floor!
EDIT 1/5/14 - added further description of Provigil event, added general anesthetic history, added more description to a few bullet points
EDIT 1/12/14 - added info about klonapin
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The question that immediately sprung to my mind when we were told the main avenue of research would be fMRI was: Can fMRI be useful in the detection of auto-immune responses and has it ever contributed to a "cure" (loose term) of an auto-immune disease.
My question as well, FB! :)
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The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things
Wow, this is exactly what I was expecting. No joke!
I have had so many problems in my life that implicated the vagus nerve that I could not help but feel that it would have some connection to POIS.
First, a list, so that the connection between my health challenges and the nervous system are apparent, then a longer story to explain these after:
Current age: 27
- Major depression, treatment resistant for many years (now under control)
- Mania/psychosis, triggered after taking Provigil, and still something I need medication for
- Poor tolerance of the majority of psychiatric and neurologic meds I've taken (increased nervousness and anxiety, akathesia, dysphoria, depersonalization, or feeling strange weakness, and more, and more)
- Low, poor affect. Even when not feeling depressed, I seem to not display much emotion. I also fail to feel drives, like when I should be feeling angry I don't feel much
- Historically very sensitive to emotional distress, very fearful and upset as a child. Socially anxious as a teen and adult
- Infrequent bowel movements/long urine retention most of my life
- Digestive diseases - dysbiosis and possible new diagnosis of Small Intestine Bacterial Overgrowth, candida infection (suspected)
- Poor mobility at certain areas of my mouth/face, and speech problems that persist to adulthood - suggestive of herpesvirus impacting nerves in my face? Bell's palsy-like?
- Pectus excavatum/hypermobile joints/stria (stretch marks) - I understand connective tissue disorders can contribute to neuro disease like disautonomia. I can't help but wonder that if I had issues with my vagus nerve that my chest wouldn't grow right
- Bizarre sleep paralysis/would wake up startled with the feeling like I am passing away, yet I am unable to perform a typical "gasping reflex" to resolve the feeling of suffocating. Would happen after having alcohol or also antihistamines (benadryl)
- Vascular issues - heart rate on the low end (nurses keep asking me if I'm an athlete, nope!) Reynaud's syndrome (poor circulation in my periphery), fluctuating blood pressure (more rare), often large difference between systolic and diastolic pressures. Fairly bad orthostatic hypotension when I was on SSRIs/SSNRIs
- Metabolic syndrome at age 24, despite only having been overweight for 1.5 years, but while on fairly high amounts of antipsychotics
- Good response to B vitamin supplementation (with of course niacin)
- Certain textures (or even the thought of them) make me shiver down my spine
I personally have had what the doctors were only able to vaguely describe as a "vasovagal event" after taking the "wakefulness promoting agent" Provigil. I was also on the antidepressant Cymbalta which is known for its activating properties. I had one of the most bizarre and terrifying feeling of what seemed like hot liquid spilling, beginning from the base of my skull to throughout my body. It crept down my back, and spread to the center of my torso, where the vagus nerve begins. I was shaking, panicked, and sweating an unbelievable amount. I thought I might die. I was in a psychiatric hospital at the time (luckily), so I had professionals observing me during this time. I paced back and forth until my legs gave out from under me. This was what the doctor latched onto when he thought I had a vasovagal event (essentially a type of fainting), but I never once lost consciousness. I unfortunately remember the entire torturing episode. It lasted about 15 minutes maybe.
One week later I had my first ever psychotic episode, and my journey to recovery took a turn for the worse. I was put on antipsychotics, but I was so extraordinarily sensitive to so many drugs I ended up staying at the hospital 3 months before they found the right drugs for me and felt comfortable letting me go.
I started my battle with depression the exact time POIS started. I was a nervous, shy kid with a slight speech impediment but a high acheiver. Once I hit 13, my life started to go downhill. I always wondered about vagus nerve stimulation, as I new it was being tried for treatment resistant depression, and I sure fit that category until I 1) I had Electro-Convulsive Therapy and 2) I stopped taking antidepressants and instead relied on lithium
Another reason I thought the vagus nerve is digestion. I have been fighting gut problems for close to three years now, and they often begin with faulty nervous function. Poor nervous system stimulation to the gut (vagus nerve participates in this from my memory) can lead to low "motility" in the gut, allowing excess bacteria and fungus an opportunity to take hold. I had some of my best times in the recent past when I was eating low to no sugar diets and after taking antifungals. I recently relapsed, and my gut hurts. I am in the process of finding out if I have a newer diagnosis, called Small Intestine Bacterial Overgrowth (SIBO). Just took a hydrogen breath test. Found out I am lactose intolerant (I didnt used to be) and I am waiting on my gastroenterologist's interpretation on SIBO.
Classes of meds and my reactions to them:
- Mood stabilzers - Extreme intolerance to Lamictal and Trileptal. Extreme dysphoria. Almost killed myself on Trileptal
- Antidepressants - Poor response. Treatment resistant. Unsettling dreams, and nervousness on SNRIs. In combination with Provigil, Cymbalta probably contributed to my development of schizo-affective disorder
- Sleep meds - Not effective. Did not help me sleep, Provigil made me have the terrible reaction I detailed above and led to psychosis/schizo-affective disorder
- Dopamine agonists - made me sleepy and at worst slightly catatonic. I also had irritability with Wellbutrin
- Beta blocker - made me lethargic and felt weak
- Muscle relaxants - dangerous. Would feel very weak
I've taken so many medications, I'll probably remember more later and have to update this. I actually am hoping that a disordered vagus nerve or other disordered nerve is our problem, as treatments like nerve stimulation already exist! See http://en.wikipedia.org/wiki/Vagus_nerve_stimulation (http://en.wikipedia.org/wiki/Vagus_nerve_stimulation)
A question: why is my second consecutive orgasm so intense and so much more debilitating? My sensation of pleasure goes through the roof, then it feels my brain falls to the floor!
Hello nightingale
i want to know for how long have you been taking anti depressant treatment. Please help.Thanks
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Well said Nighting. This is a really great idea. I'll probably write a little more detail about my symptoms soon too for Dr. Komisaruk.
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The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things.
Just wondering how you know this information... Are you able to see the plan or do you have access to information that we can't see? If so could you share all this information with us? Obviously we are interested in knowing more about the research as we're all sponsors it.
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The Dr. is focusing on the vegal nerve, which has a very diverse influence, and can effect everything from spasms, and rhythms (the heart for instance) to digestion, orientation well, lots of things.
Just wondering how you know this information... Are you able to see the plan or do you have access to information that we can't see? If so could you share all this information with us? Obviously we are interested in knowing more about the research as we're all sponsors it.
We have been asking NORD to send more information, and the best they could do so far was to give the title of the plan, with promises to get us in touch with the researchers. The researchers have since contacted us, and are anxious to begin recruitment and have a good plan to inform and be informed about the whole POIS program.
This all will be unfolding very shortly. We just didn't want to say too much without more real and substancial information, to avoid questions like the one you are asking.
Sorry, we just have to be patient. We don't want to isolate you all from the process, and by the sounds of it, to our delight, the investigators are very prepared to clarify, and become informed.
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Like Daveman, I think it is better to report complete information shortly...rather than give you bits and pieces which have not yet been fully connected. Dr. Komisaruk only signed the acceptance form this last week.
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I'm thousands of miles away from Newark, but I'm considering volunteering myself.
Even with all the testosterone I'm taking (successfully), if that will help another POISer like me (some of us have different reactions, as Defsync points out), it might help!
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I'm 3,000+ miles away from Newark, but I'm considering volunteering myself.
Even with all the testosterone I'm taking (successfully), if that will help another POISer like me (some of us have different reactions, as Defsync points out), it might help!
Demo, if I go, you go. Team effort brohem. We need your brains, and my loudmouthed capacity for asking tough questions.
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Thank you Defsync (Yes, SIR!!!!!!! - you're my Marine sergeant, right? ;D)...but I'll decide for myself, thank you ;)
Just like everyone else ;D
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Thank you Defsync (Yes, SIR!!!!!!! - you're my Marine sergeant, right? ;D)...but I'll decide for myself, thank you ;)
Just like everyone else ;D
Always the ambassador =)
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The symptoms of vasovagal response ("lightheadedness, nausea, the feeling of being extremely hot or cold (accompanied by sweating), ringing in the ears (tinnitus), an uncomfortable feeling in the heart, fuzzy thoughts, confusion, a slight inability to speak/form words (sometimes combined with mild stuttering), weakness and visual disturbances such as lights seeming too bright, fuzzy or tunnel vision, black cloud-like spots in vision, and a feeling of nervousness") that Defsync posted about earlier (before he removed it lol) are exactly the kind of symptoms I experience. When I first got POIS I clearly remember the black-cloud-like spots and the feeling of being very warm and nervous, lightheaded and tons of other symptoms mentioned for a vasovagal response.
Maybe they're onto something here. It'll be interesting to see what happens for sure.
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For many people here, POIS began at puberty. For me it was different. POIS began after I had radio-iodine treatment for an overactive thyroid which then effectively became underactive through being at least partly destroyed. Because of this, my case has the potential to inform. Thyroid problems don't seem to be common to all of us but, with the thyroid as a starting point, examining possible knock on effects might yield some clues as to possible causes of POIS.
There are a select few people who seem to have been cured of POIS by addressing vitamin/mineral imbalances. This is something I have started to experiment with myself. The thyroid and the vagus nerve appear to have some influence over the digestive system and thus possible malabsorption of nutrients. I am in the early stages of looking into this so won't write anymore just now but it seems worth highlighting.
DAVEMAN - is it possible to make this thread more prominent on the site? If this is members' main way of communicating their thoughts to Dr Komisaruk at the moment I think it should be more obvious. I only found it from a link in one of your posts and could have easily missed its location. Is it possible to create a separate category for it. Perhaps create a: THINGS WE WOULD LIKE TO TELL POIS RESEARCHERS category and put the thread in there?
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Two interesting new "scientific animal testing & research-based" articles that were linked to by new user (Thanks Zee80) on NSF Forum yesterday, about depression, the brain and microglia cells:
http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2013155a.html
http://neurosciencenews.com/neuropsychology-mechanism-underlying-depression-712/
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I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, Testosterone, Progesterone, and persons who have been desensitised to semen.
I think your questions are on point FB. I'm especially interested in whether any comparative analyses will be conducted between those who have undergone desensitization and those who have not. Such analyses might been seen as muddling already complicated data but could provide some insight into the promise (or lack thereof) of treatments that POISers have begun to undertake.
[Edit:] Although i'm located in California, I'd also be happy to volunteer depending on the cost and time commitment necessary.
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I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, Testosterone, Progesterone, and persons who have been desensitised to semen.
I think your questions are on point FB. I'm especially interested in whether any comparative analyses will be conducted between those who have undergone desensitization and those who have not. Such analyses might been seen as muddling already complicated data but could provide some insight into the promise (or lack thereof) of treatments that POISers have begun to undertake.
[Edit:] Although i'm located in California, I'd also be happy to volunteer depending on the cost and time commitment necessary.
This could be a very valuable test, although what would be missing is some correlation to before and after.
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I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, [color= red]Testosterone[/color], Progesterone, and persons who have been desensitised to semen.
Damn! That's the 3rd suggestion that TRT'ers like me should be tested! ;D
Don't worry, I won't start a riot in Newark ;D
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For "questions we would like to ask..."
The research group at Rutgers University-Campus at Newark has just received a grant from the National Organization of Rare Diseases (NORD) to characterize the physical and cognitive symptoms of POIS and test for possible vagus nerve involvement. Upon making all the necessary preparations for the study (which will take approximately 2 months) we will post here a detailed description of the research procedures and a
consent form for your possible participation. In the meantime, if you have questions, please feel free to contact us.
Pooja Lakshmin, MD plakshmin@psychology.rutgers.edu
Barry R. Komisaruk, Ph.D. brk@psychology.rutgers.edu
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I believe there should be a third group to consider when doing testing. The group will contain those of us that never fully recover cognitively even if we abstain for periods more longer than a week. Hopefully this group even after abstaining for a long time share similar fmri patters with poisers who just ejaculated.
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I believe there should be a third group to consider when doing testing. The group will contain those of us that never fully recover cognitively even if we abstain for periods more longer than a week. Hopefully this group even after abstaining for a long time share similar fmri patters with poisers who just ejaculated.
Excellent point, CertainlyPOIS!
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This is great news - I'm about a 30 minute commute to Newark and Rutgers University is my alumn. I'm a lurker on this site but have been following everything closely for the past year or so. Will do my best to get involved in this research. I'm smiling ear to ear right now knowing that this community has made a giant step in the right direction.
We're smiling right along with you! :)
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I would like to be sure that we catch POIS types who respond to deferent treatments in the fMRI test. The mains ones in my view are people who have a positive effect taking; Niacin, Testosterone, Progesterone, and persons who have been desensitised to semen.
I think your questions are on point FB. I'm especially interested in whether any comparative analyses will be conducted between those who have undergone desensitization and those who have not. Such analyses might been seen as muddling already complicated data but could provide some insight into the promise (or lack thereof) of treatments that POISers have begun to undertake.
[Edit:] Although i'm located in California, I'd also be happy to volunteer depending on the cost and time commitment necessary.
Good point, Egordon.
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mellivora, excellent points you raise, but keep in mind that both Dr. Komisaruk and Dr. Lakshmin both invited direct email inquiries from our Forum Members!
(See Rutgers Research Announcement
http://poiscenter.com/forums/index.php?topic=1225.msg11331#msg11331
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I believe there should be a third group to consider when doing testing. The group will contain those of us that never fully recover cognitively even if we abstain for periods more longer than a week. Hopefully this group even after abstaining for a long time share similar fmri patters with poisers who just ejaculated.
Excellent point, CertainlyPOIS!
Yes, that's a really good point CertainlyPOIS!
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POIS for me has caused memory and cognitive dysfunction. Best way to describe it is this:
say a problem is before me. normally i would take into account everything i know about the problem to solve it. Under POIS, my ability at memory recall and remembrance is severely affected, to where I might only remember half of what i should know to solve the problem. And also believe that that half is ALL I know (no acknowledgement of missing memory).
another example ive had would be driving. I see the light is red. I know that it means something specific, but I do not remember that it means stop. So, in an open intersection I would drive right through not realizing until someone started honking that red means stop.
i might study for an exam for weeks, have a nocturnal emission the night before, then fail the exam the next day unable to recall the majority of the memorization over the last couple weeks. this would from the beginning of puberty around 11 until 18 when I graduated from high school.
I may have worked at a job for years, know procedures to follow like the "back of my hand", yet post orgasm the following days, POIS has caused me to forget procedures that I have done EVERY DAY since starting that job. And have fun trying to explain to a manager why you forgot procedures you know you know and have never failed to follow EXCEPT when under POIS symptoms.
in the marine corps infantry I might train for a live fire exercise for a couple days. have a nocturnal emission the night before the live fire exercise. during said exercise I am to control half a squad of marines using hand signals and judging visual distance to ensure no marine is too far ahead or behind (to avoid friendly fire). instead i forget hand signals and my ability to judge distance is greatly skewed, putting marines in the line of fire.
cognitive reasoning seems to be affected, for the main reason that memory recall is greatly stunted, IN ADDITION to the ability to REALIZE that memory is missing. This leads one to respond to situations or communication irrationally because in one's mind "i think i know everything there is to know about what im responding too" when in reality under POIS "im missing many pieces of the information that I know but am unable to recall and unable to remember that I am missing"
I believe it might be of interest in looking at the histamine that is released from the mast cells during orgasm. Note below in this dissertation the affect of Niacin on histamine, Niacin being one of "helpful" therapies to POISers. The hippocamus has histamine receptors. I wonder if the histamine released during orgasm can affect teh hippocampus ability to modulate memory functions.
So to this I would suggest, during fMRIs, that if possible some focus be concentrated on the hippocampal region of the brain.
"Research has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia ( histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histimine."
I can see looking at the Vagus nerve since it would explain more the additional physical symptoms of POIS. I personally have had no physical symptoms, except perhaps a greater sensitivity to pain, tho I think that might be from the depletion of dopamine during orgasm.
I notice the longer I go without an O the harder it becomes to sleep, to the point of near insomnia for a day. Maybe in POISers we have brains that cannot modulate dopmine and pre-O our brains get too much dopamine because the brain has a hard time regulating it down, and post Orgasm levels stay low for too long because the brain has a hard time regulating it up.
Another theory is the release of excessive glutamate during Orgasm, and a brain unable to regulate that chemical down properly. 3 glutamate receptors have been shown to affect memory transmission and retention. A drug that does seem to significantly affect the memory dysfunction is Lyrica (pregabalin). This drug decreases the release of glutamate as one of its functions. Perhaps in a POISed brain this helps regulate down the glutamate that may be there in too great an amount, helping to relieve some of the memory dysfunction.
Having tried a gambit of drugs in order to look for a solution, the only one that seemed to actually increase memory function, although not 100%, post Orgasm is Lyrica (pregabalin). I would think stimulant drugs would have worked, if the vagus nerve is the cuplrit, by blocking the para-synaptic feedback of the vagus nerve that would be causing POIS memory symptoms. But I can tell you there is no stimulant drug that has ever worked for me to ANY effect to relieve the memory dysfunction. Again, Lyrica is the only thing that I have ever seen have an affect on that particular POIS symptom: memory and cognitive dysfunction. I will also state that taking a multivitmain, like one of the "completes" that includes minerals, has a MINOR but SIGNIFICANTLY NOTICEABLE iaffect n relieving a smidgeon of the memory dysfunction. Which vitamins or minerals are the reason, I do not know. I just know that doubling up on a complete multivitamin during POIS does help.
In short: I believe it may be worth looking at the levels of histamine and glutamate released during orgasm, and the ability of a POISers brain to regulate those chemicals back to normal levels, in case the hippocampus and associated memory structures are affected by high levels of these bio chemicals. I also believe that it may be worth looking at the hippocampus during fMRI studies (fMRI during orgasm, at 3 hours, 6 hours, 12 hours, and every other 12 hours for 5 days) to see if the hippocampus functioning is affected during POIS.
One major point I would like to note: Men seem to be more affected with POIS than women. Note, men are prone to nocturnal emissisions (unscheduled orgasms) on a regular basis, where women are not. Also, POIS may not be an all or nothing illness, it may be a % of the brain inability to regulate post Orgasm. To this I say that there may be more people out there with some level of POIS but at lower levels. Some of us even after years of POIS had no idea what POIS was doing to us, so for someone who may have much lesser symptoms, they certainly may not even realize they are being affected so. I also propose that considering the vast majority of homeless in america are men, I wonder if a percentage of these homeless men have struggled because they have POIS (unrealizing their unscheduled nocturnal emissions are causing them cognitive dysfunction).
Make no mistake, a job that requires a fast response time and huge amounts of memorization can be gravely affected by the memory dysfunction from POIS. It is severe enough to take the lead from several mental disorders that citizens of the united states currently get disability SSI from. To me that merits that this condition should absolutely be looked into far more than it is.
Over human evolution as we have continued to increase our leisure time a hundred fold from the days oh hunter and gathering, more time for "liesure sex" over the time of this evolution may have resulted in a condition like this coming about because we were never built to have this much sex, but as centuries have gone maybe POIS is the brains reaction to this societal procreation, saying "too much, too much!". Certainly a human being affected with POIS does not try to have MORE sex, but of course tries to have LESS.
Well thanks again doctors for taking the time to organize this and move forward. It would be great to have an answer for that 12 year old little boy who suddenly finds his brain not working properly after an orgasm, to tell him that we know what the problem is and have a solution for him so that he can continue to have a normal life, a normal relationship, and never have to live in fear each night he goes to sleep, afraid that he will wake up a lesser human being.
~Defsync
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Thank you, Defsync, for such a revealing description of POIS...and you express our sincerest desires with your heartwarming encounter that gives GREAT HOPE to that unfortunate 12-year old POISer!!
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Totally agree. That was a very good post by Defsync. I can so relate to the memory issues he was writing about. A lot of the brain fog I experience I think is caused by severe short term memory issues. For example, I can read a paragraph and not remember one word about it. After an orgasm, I would have to re-read it several times before absorbing any of the information. At the same time I would be experiencing fatigue, frustration, apathy and a strange scalp sensation.
Also, it's interesting, and I've wondered too if POIS is a "modern illness" like Defsync mentioned. After all, if it existed or were as common in the past, surely a disease as bad as this would've been talked about a lot more and we would know a lot more about it like we do for other illnesses. Just an interesting thought I've wondered about too.
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additional notes:
baseline fMRI might want to be taken before any Volunteer has their first orgasm. should also set how long before first baseline fMRI a volunteer has had previous orgasm. something like "2 weeks clean" to make sure baseline fMRI is showing a completely non-POISed brain
volunteers will have to be honest and careful in how long they've gone without an NE. if a volunteer has an NE by accident say the day before, they will need to be 100% honest with the research group or the data could be irrevocably skewered.
also, some questions that may need to be answered: about how long will volunteers need to be around to complete the research? will Rutgers provide empty dorm rooms? will we need to get a hotel and room up together (altho a room full of POISed guys could be insanely depressing although in a sick twist of science you'd wonder what the atmosphere would be like LOL). On top of additional traveling costs, it would help volunteers to get a general estimate of how much money they will personally need in order to volunteer, keeping in mind not only the time there but the lost wages taking off from work.
also, will there be a therapist associated with the group that can help any Volunteer who finds themselves unable to cope emotionally/mentally during or after the research? Say youve had POIS your whole life. You go and volunteer for this research. They find absolutely nothing from your brain scans to warrant any kind of aberration. Personally im not gonna give two shiz about it, but I would hate for someone to go into that research, see others who show results in the research, while they do not, and then have NO therapeutic resource in case they have a breakdown.
might also be useful to have a pre-workup of family history of illnesses done up ahead of time.
in additional what medications will volunteers be allowed to continue taking, or what medications have to be stopped in order for the research to move forward on said volunteer. i imagine ADD, ADHD, and anti-depressants might NOT be allowed?
that is all for now. oh wait cant leave without this one....
you find a beautiful girl, dancer (ballroom, dont get excited), plays half dozen instruments, draws, paints, sings, did i mention really pretty? smokin hot really... college student going to school for digital photography..... you get pre-engaged. she knows about the pois. has been... mostly supportive about not getting all nuts with the 'sex.
then one day you and her realize, that indeed she DOES need the sex as much as a normal girl that age would want, and that since you cant cause youd be POISed to death,
have to call off the entire relationship. total suckage. but life goes on, and fortunately you learn to live with the fact you may end up one day being a crazy old cat dude, livin in a house with nothing but animals.
-
haha Defsync!
-
Defsync is happy because his bags are finally packed for flight to Newark.
Now...can someone give him a ride to the airport??? ;D
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Things we would like to be able to tell Dr. Komisaruk and Lakshmin
Hi doctors Komisaruk and Lakshmin
Thank you very much for your work. The first thing is I respect your method and your point of view to analyze Pois mechanism. I really hope MRIs will give a clear solution and a clear explanation.
Anyway, as a veteran member, I took a lot of time to search and to think about Pois. A lot of us basically think Pois has something to do with elements like Testosterone, dopamine (http://www.ncbi.nlm.nih.gov/pubmed/11736795) and maybe histamines. We have the feeling of a temporary disturbance going back to the normal after some days.
I have to say I was really enthusiastic when I found on the internet the Dopamine-responsive dystonia because my feeling was you putted the finger on the truth.
My question is easy :
Can the MRI technology show the fluctutation of dopamine in brain before and after orgasm ?
My second question, suggested by some sufferers is close : can Rutgers' fMRI's detect "autoimmune" reaction, which is a serious hypothesis to explain Pois for some people ?
Thank you very much.
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Thanks for asking, b_jim!
I think your questions reflect many of our thoughts at POISCenter!
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My syptoms began when i was 18,these were same like others ,mental issues,extreme fatigue,joint ain etcwheich go away in 2 days. after i was 21 i had jaundice for three months .After taht my symptoms changed and it became severely weak abdomen after O ,weakness Not depression like before.Additionally i have werner syndrome not confirmed 100% but almost same symptoms.
Hope doctors are reading that and iam not too late
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My doctor who does the desens said that fMRI is a good way to start. He said that there was this patient who has perfume allergy. Some people say this not an allergy, but something psychological, something not real. So two patients went to sleep in the lab with fMRI. One of them has perfume allergy and the other doesn't have perfume allergy. While asleep they brought in perfume. The brains of the patient with perfume allergy directly responded. So this is their proof that perfume allergy is an actual disease.
But my doctor said that after fMRI there is other research needed. So we have to be patient.
Maybe it's an idea for dr. Komisaruk to do fMRI with a POIS patient who is sleeping.
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Hi Vandemolen,
I'm not sure what the point of doing an fMRFI while sleeping would be when the trigger is orgasm.
How's the desensitisation going? I see the last update on your footer is April 2013.
FloppyB
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Things we would like to be able to tell Dr. Komisaruk and Lakshmin
Hi doctors Komisaruk and Lakshmin
Thank you very much for your work. The first thing is I respect your method and your point of view to analyze Pois mechanism. I really hope MRIs will give a clear solution and a clear explanation.
Anyway, as a veteran member, I took a lot of time to search and to think about Pois. A lot of us basically think Pois has something to do with elements like Testosterone, dopamine (http://www.ncbi.nlm.nih.gov/pubmed/11736795) and maybe histamines. We have the feeling of a temporary disturbance going back to the normal after some days.
I have to say I was really enthusiastic when I found on the internet the Dopamine-responsive dystonia because my feeling was you putted the finger on the truth.
My question is easy :
Can the MRI technology show the fluctutation of dopamine in brain before and after orgasm ?
My second question, suggested by some sufferers is close : can Rutgers' fMRI's detect "autoimmune" reaction, which is a serious hypothesis to explain Pois for some people ?
Thank you very much.
Begin forwarded message:
From: "Barry R. Komisaruk" <brk@psychology.rutgers.edu>
Date: February 8, 2014, 9:22:29 AM PST
To: Demo
Cc: plakshmin@gmail.com
Subject: Re: Forum interaction
Reply-To: brk@psychology.rutgers.edu
Dear Demo,
Actually, I prefer receiving direct emails to this address [email above], so people
don't have to wait until I check the forum. I don't know Pooja's
preference yet.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102
phone (office): 973 353 3941
phone (mobile): 973 462 0178
On Sat, February 8, 2014 12:10 pm, Demo wrote:
Dear Dr. Komisaruk and Dr Lakshmin,
Is posting questions like this [above is b_jim's example] at our forum a good way to
communicate questions from Forum members?
Many thanks,
Demo
TO ALL FORUM MEMBERS: Don't forget to share any response/reply from Rutgers that could help your fellow POIS sufferers!
-
FROM DR LAKSHMIN
On Feb 9, 2014, at 5:58 AM, Pooja Lakshmin <plakshmin@gmail.com> wrote:
Hi Demo,
I also prefer direct emails - to my Rutgers email address which I
listed on the site.[Dr Lakshmin's Email address is shown directly above].
Thank you!
Pooja
--
Pooja Lakshmin, MD
On Sat, February 8, 2014 12:10 pm, Demo wrote:
Dear Dr. Komisaruk and Dr Lakshmin,
Is posting questions like this [see b_jim's post directly above in Dr Komisaruk's preference post]
a good way to communicate questions from Forum members?
Many thanks,
Demo
-
My doctor who does the desens said that fMRI is a good way to start.
But my doctor said that after fMRI there is other research needed.
I agree, Van.
-
I'm 3,000+ miles away from Newark, but I'm considering volunteering myself.
Even with all the testosterone I'm taking (successfully), if that will help another POISer like me (some of us have different reactions, as Defsync points out), it might help!
Demo, if I go, you go. Team effort brohem. We need your brains, and my loudmouthed capacity for asking tough questions.
Looks like I'm gonna listen up to Defsync after all!!!
;D
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Maybe for POIS-patients with PE? Or maybe put semen on an arm? I don't know, I am not a doctor.
Desens is ok. Still 70% less symptoms. But I have a big UTI problem. Maybe the desens made it worse.
Hi Vandemolen,
I'm not sure what the point of doing an fMRFI while sleeping would be when the trigger is orgasm.
How's the desensitisation going? I see the last update on your footer is April 2013.
FloppyB
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FROM STEF RE TRAVEL TO NEWARK!
Hi All,
The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult.
It takes ~ three weeks for them to make arrangements, FYI.
They've been around for years and are a reliable, trustworthy non-profit organization --
National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767
I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.
Stef
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Maybe for POIS-patients with PE? Or maybe put semen on an arm? I don't know, I am not a doctor.
Desens is ok. Still 70% less symptoms. But I have a big UTI problem. Maybe the desens made it worse.
Hi Vandemolen,
I'm not sure what the point of doing an fMRFI while sleeping would be when the trigger is orgasm.
How's the desensitisation going? I see the last update on your footer is April 2013.
FloppyB
While sleeping?? Don't think so.
-
FROM STEF RE TRAVEL TO NEWARK!
Hi All,
The following organization will help provide free air fare to and from medical centers within the USA. They also have a long-distance ground transportation program (i.e. bus, train) They require you to fill out their financial form -- to show that you qualify for their free services -- but they do not make this process difficult.
It takes ~ three weeks for them to make arrangements, FYI.
They've been around for years and are a reliable, trustworthy non-profit organization --
National Patient Travel Center
4620 Haygood Rd, Suite 1
Virginia Beach, VA 23455
Homepage: http://www.patienttravel.org/
Email: info@nationalpatienttravelcenter.org
Phone: 1-800-550-1767
I hope this is helpful to those of you whose finances prevent your traveling to Newark, but are eligible for participation in the fMRi study.
Stef
-
Hi guys,
i m new in tjis forum.
I m 36 years old
and have the pois since i have 14 years.
About the mri and the vagus nerve,
that interesting
I have typical way to cure my pois
for many years.
In fact a self massage on the head
for begining the side and i felt better
but strangly after Orgasm just massage
a little bit a few second behind my neck
or just put my hand on the neck, or behind the neck and
the symptoms were gone !!!!?
It worked well,...
This is perhaps a link with the vagus nerve
I already took a lot of psychotrop, especialy neuroleptics
and now my pois is badly strong ...
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POIS for me has caused memory and cognitive dysfunction. Best way to describe it is this:
say a problem is before me. normally i would take into account everything i know about the problem to solve it. Under POIS, my ability at memory recall and remembrance is severely affected, to where I might only remember half of what i should know to solve the problem. And also believe that that half is ALL I know (no acknowledgement of missing memory).
another example ive had would be driving. I see the light is red. I know that it means something specific, but I do not remember that it means stop. So, in an open intersection I would drive right through not realizing until someone started honking that red means stop.
i might study for an exam for weeks, have a nocturnal emission the night before, then fail the exam the next day unable to recall the majority of the memorization over the last couple weeks. this would from the beginning of puberty around 11 until 18 when I graduated from high school.
I may have worked at a job for years, know procedures to follow like the "back of my hand", yet post orgasm the following days, POIS has caused me to forget procedures that I have done EVERY DAY since starting that job. And have fun trying to explain to a manager why you forgot procedures you know you know and have never failed to follow EXCEPT when under POIS symptoms.
in the marine corps infantry I might train for a live fire exercise for a couple days. have a nocturnal emission the night before the live fire exercise. during said exercise I am to control half a squad of marines using hand signals and judging visual distance to ensure no marine is too far ahead or behind (to avoid friendly fire). instead i forget hand signals and my ability to judge distance is greatly skewed, putting marines in the line of fire.
cognitive reasoning seems to be affected, for the main reason that memory recall is greatly stunted, IN ADDITION to the ability to REALIZE that memory is missing. This leads one to respond to situations or communication irrationally because in one's mind "i think i know everything there is to know about what im responding too" when in reality under POIS "im missing many pieces of the information that I know but am unable to recall and unable to remember that I am missing"
I believe it might be of interest in looking at the histamine that is released from the mast cells during orgasm. Note below in this dissertation the affect of Niacin on histamine, Niacin being one of "helpful" therapies to POISers. The hippocamus has histamine receptors. I wonder if the histamine released during orgasm can affect teh hippocampus ability to modulate memory functions.
So to this I would suggest, during fMRIs, that if possible some focus be concentrated on the hippocampal region of the brain.
"Research has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia ( histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histimine."
I can see looking at the Vagus nerve since it would explain more the additional physical symptoms of POIS. I personally have had no physical symptoms, except perhaps a greater sensitivity to pain, tho I think that might be from the depletion of dopamine during orgasm.
I notice the longer I go without an O the harder it becomes to sleep, to the point of near insomnia for a day. Maybe in POISers we have brains that cannot modulate dopmine and pre-O our brains get too much dopamine because the brain has a hard time regulating it down, and post Orgasm levels stay low for too long because the brain has a hard time regulating it up.
Another theory is the release of excessive glutamate during Orgasm, and a brain unable to regulate that chemical down properly. 3 glutamate receptors have been shown to affect memory transmission and retention. A drug that does seem to significantly affect the memory dysfunction is Lyrica (pregabalin). This drug decreases the release of glutamate as one of its functions. Perhaps in a POISed brain this helps regulate down the glutamate that may be there in too great an amount, helping to relieve some of the memory dysfunction.
In short: I believe it may be worth looking at the levels of histamine and glutamate released during orgasm, and the ability of a POISers brain to regulate those chemicals back to normal levels, in case the hippocampus and associated memory structures are affected by high levels of these bio chemicals. I also believe that it may be worth looking at the hippocampus during fMRI studies (fMRI during orgasm, at 3 hours, 6 hours, 12 hours, and every other 12 hours for 5 days) to see if the hippocampus functioning is affected during POIS.
One major point I would like to note: Men seem to be more affected with POIS than women. Note, men are prone to nocturnal emissisions (unscheduled orgasms) on a regular basis, where women are not. Also, POIS may not be an all or nothing illness, it may be a % of the brain inability to regulate post Orgasm. To this I say that there may be more people out there with some level of POIS but at lower levels. Some of us even after years of POIS had no idea what POIS was doing to us, so for someone who may have much lesser symptoms, they certainly may not even realize they are being affected so. I also propose that considering the vast majority of homeless in america are men, I wonder if a percentage of these homeless men have struggled because they have POIS (unrealizing their unscheduled nocturnal emissions are causing them cognitive dysfunction).
Make no mistake, a job that requires a fast response time and huge amounts of memorization can be gravely affected by the memory dysfunction from POIS. It is severe enough to take the lead from several mental disorders that citizens of the united states currently get disability SSI from. To me that merits that this condition should absolutely be looked into far more than it is.
~Defsync
Maybe related to this partial text from post above from Defsync....
Since taking Niacin, I am experiencing the return of Nocturnal Emissions ! Maybe Niacin opens up something at a subconscious level of the brain / mind.
I had nearly trained my subconscious for this NOT to happen for the last few years, as it allows me no control over days I have to be at my best possible energy for work. Age was making it less of an issue, but back on the POIS agenda for me now. The pros and cons of treatments I guess, and worth exploring areas mentioned by Defsync. Anyone else had this experience?
This is maybe something of interest to anyone researching Niacin and whether it opens us up more?
-
Any news?
I understand we have had maybe 10 words in 2 month from Dr K team...Did I miss something ?
-
RUTGERS' STATUS
Demo,
It takes about a month to get IRB approval, if all goes well.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers University
Smith Hall 327A
101 Warren Street
Newark, NJ 07102
phone (office): 973 353 3941
phone (mobile): 973 462 0178
On Fri, February 28, 2014 2:49 pm, Demo wrote:
Thanks, Barry,
I thought the delay was caused by getting the official NORD letter which
we pushed for. We thought it was a month from your receipt. Am I just
nitpicking "days"?
Best,
Demo
ps - is everything on hold for Rutgers' formal approval?
Anything we can do to help initiate this long-awaited study would be
appreciated.
On Feb 28, 2014, at 11:06 AM, Barry Komisaruk <brk@psychology.rutgers.edu>
wrote:
Dear Demo,
Hopefully in about a month.
Barry
Barry R. Komisaruk, Ph.D.
Distinguished Professor, Dept. Psychology
Adjunct Professor, Dept. Radiology
Board of Governors Distinguished Service Professor
Rutgers, The State University of New Jersey
Smith Hall, Room 327A
101 Warren Street
Newark, New Jersey 07102
phone: 973-462-0178 (mobile)
973-353-3941(work)
fax: 973-353-1171
On 2/27/2014 5:09 PM, Demo wrote:
Hi Barry,
Just curious if there is an ETA for Rutgers' formal approval of fMRI
for POISers?
Best regards,
Demo
-
I read with great pleasure your sotier of POIS but I would say (I do not want to sound rude) if you could not go off-topic comments and feedback.
just the answer "Things we would like to be Able to tell Dr. Komisaruk and Lakshmin."
It would all be easier to read for the doctor and us, what do you think?
;D ;)
-
Hi all,
I wish we all can find a cure soon.
I want to highlight that POIS does not hit instantly after orgasm instead it gradually increase in effect. For me, I don't feel any symptoms in the first 4 hrs after orgasm, pois starts after 4 hrs and it reaches the maximum in the second day, and gradually decreases then.
I think this may guide the researchers to take measurements or fmri scans in different time periods after orgasm and not directly at orgasm. This may help to figure out the hormonal, blood or even nero changes that lead to the miserable symptoms of POIS.
Thanks,
-
I read with great pleasure your sotier of POIS but I would say (I do not want to sound rude) if you could not go off-topic comments and feedback.
just the answer "Things we would like to be Able to tell Dr. Komisaruk and Lakshmin."
It would all be easier to read for the doctor and us, what do you think?
;D ;)
Both Dr K and Dr Lakshmin prefer reading their own mail directly:
http://poiscenter.com/forums/index.php?topic=1220.msg11541#msg11541
-
I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
-
I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!
I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.
Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?
-
I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!
I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.
Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?
I'm not sure if the second ejaculation is more pleasureful with me, but maybe it is...
-
I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!
I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.
Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?
I believe are ejaculation is so strong because we wait so long in between orgasms. If I wait a day after the last "o" than had an orgasm, the ejaculate won't be as forceful. But if I wait 2 weeks from my last ejaculation my ejaculate will be extra forceful.
-
I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!
I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.
Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?
I believe are ejaculation is so strong because we wait so long in between orgasms. If I wait a day after the last "o" than had an orgasm, the ejaculate won't be as forceful. But if I wait 2 weeks from my last ejaculation my ejaculate will be extra forceful.
I disagree with you. In my case, at least, doesn't have relation with the time I wait between the orgasms. I didn't wait too long because I didn't see a lor of difference, but my ejaculation is to strong. If I wait a long time, the volume of sperm increase, but I don't see difference in the distance of ejaculation... And, despite with the abstinence, my ejaculation is a lot abnormal... A normal person don't have that...
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What is the best way to seek medical intervention or assistance? I have seen my general doctor before and he responded with skepticism and did not know what else to think. He said that he has never had someone complain of these symptoms before and that it may be "psychosomatic." I consulted an allergist and he said this whole concept was absurd. Luckily he did not charge me as he thought I was being misled. I then saw a urologist believing that this was somehow related to some dysfunction of my vas deferens or prostate. He checked things out and said everything was normal. When I told him about the symptoms hew as skeptical and when I told him about "POIS" he began to smirk and say that doesn't exist. I saw another urologist who said that I should speak to a psychologist. I tried to make an appointment with a neurologist nearby and found out that I would have to go back to my general doctor, who hasn't got back to me. Where should I go from here?
-
Hi Jmari,
I would like to just echo all that Prancer says here as I share the frustration.
Within the POIS community share forums, there are some potential symptom reduction things to try. Of course, everyone is different so it takes patience and some research within the posts, to see what will help you.
We have to remain hopeful that some day soon, a guy can go to his GP and not be so dismissed or that hopefully specialist treatment will emerge out of the focus that this condition will - with our support - attract in the immediate future.
GP's don't know everything and it would appear in the modern health system, much education for GP's may take precedence, when there is a drug to be prescribed. It isn't the GP's fault of course.
-
Thanks, keeping the faith!!
-
Hi Jmari,
I would like to just echo all that Prancer says here as I share the frustration.
Within the POIS community share forums, there are some potential symptom reduction things to try. Of course, everyone is different so it takes patience and some research within the posts, to see what will help you.
We have to remain hopeful that some day soon, a guy can go to his GP and not be so dismissed or that hopefully specialist treatment will emerge out of the focus that this condition will - with our support - attract in the immediate future.
GP's don't know everything and it would appear in the modern health system, much education for GP's may take precedence, when there is a drug to be prescribed. It isn't the GP's fault of course.
The best thing is to try things on here that have helped others and reduce orgasm frequency while we wait for research. Most docotors only work with known disease they dont attempt mystery cases. I will say dont waste your time and money unless you have something you want to test.
Lately when i go to the doctor i already know what i want to test for or try. I just back myself up with knowledge from research, mention all the doctors that have written about pois and the current research on pois. I also tell them how long have been doing this and how long the forums have been active. By time i do all this they cant say am crazy, they just decide whether to do the test or not.
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I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!
I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.
Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?
I believe are ejaculation is so strong because we wait so long in between orgasms. If I wait a day after the last "o" than had an orgasm, the ejaculate won't be as forceful. But if I wait 2 weeks from my last ejaculation my ejaculate will be extra forceful.
I disagree with you. In my case, at least, doesn't have relation with the time I wait between the orgasms. I didn't wait too long because I didn't see a lor of difference, but my ejaculation is to strong. If I wait a long time, the volume of sperm increase, but I don't see difference in the distance of ejaculation... And, despite with the abstinence, my ejaculation is a lot abnormal... A normal person don't have that...
To me it works in the opposite way: the stronger is the eyaculation and the more pleasurable is the orgasm, the better I feel afterwards.
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Mee too
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I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!
I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.
Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?
I believe are ejaculation is so strong because we wait so long in between orgasms. If I wait a day after the last "o" than had an orgasm, the ejaculate won't be as forceful. But if I wait 2 weeks from my last ejaculation my ejaculate will be extra forceful.
I disagree with you. In my case, at least, doesn't have relation with the time I wait between the orgasms. I didn't wait too long because I didn't see a lor of difference, but my ejaculation is to strong. If I wait a long time, the volume of sperm increase, but I don't see difference in the distance of ejaculation... And, despite with the abstinence, my ejaculation is a lot abnormal... A normal person don't have that...
To me it works in the opposite way: the stronger is the eyaculation and the more pleasurable is the orgasm, the better I feel afterwards.
For me happens this way too... But this, when I think in a Pois without threatment... What I'm saying is that my POIS improve, and, after some time, get bad again. And I realize, in this process of getting bad, that my Os was getting more pleasure.
But, for me, also happens the way you describe. The best sex I have, lower symptoms I will have... I think this have relation with tension...
Do you understand??? I don't know If I'm being clear... Sorry for my poor english...
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Me too, stronger orgasm or hotter sex = feel better
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I think that I important thing to be studied is why who suffer for POIS have strong ejaculation (my ejaculation goes for near 3 meters). I don?t konw if this happens with all Poisers but I have already read a lot saying tha have the same thing. And, other thing, is that I have more pleasure with orgasm with POIS ( I know that because I?m in a dessensibilization program. My symptoms improve and now they came back. One thing that I notice is that my Os are a lot more pleasure when I have Pois. And, when my symptons improve, the ejaculation is a lot less strong, i think like 1 meter).
I do?t know if all Poisers have that. But, if the answer is yes, I think this can be a way off diagnostic...
Sorry for my poor english...
Wow, I've been looking for someone to say something like this, because this is the EXACT thing I experience. I have to be careful when I masturbate where I'm pointing myself... I learned the hard way that if you don't find the semen soon then it's practically impossible to get off somethings, like walls!
I also notice that when I have treated myself before ejaculation, previously with Niacin, now only with NSAIDs, my ejaculation is less pleasureful and my semen does not travel as far.
Have you noticed that if you ejaculate more than once at a time (say within 30 min - 2 hours of your first one, that the second is extra pleasureful but the POIS is extra worse?
I believe are ejaculation is so strong because we wait so long in between orgasms. If I wait a day after the last "o" than had an orgasm, the ejaculate won't be as forceful. But if I wait 2 weeks from my last ejaculation my ejaculate will be extra forceful.
I disagree with you. In my case, at least, doesn't have relation with the time I wait between the orgasms. I didn't wait too long because I didn't see a lor of difference, but my ejaculation is to strong. If I wait a long time, the volume of sperm increase, but I don't see difference in the distance of ejaculation... And, despite with the abstinence, my ejaculation is a lot abnormal... A normal person don't have that...
To me it works in the opposite way: the stronger is the eyaculation and the more pleasurable is the orgasm, the better I feel afterwards.
For me happens this way too... But this, when I think in a Pois without threatment... What I'm saying is that my POIS improve, and, after some time, get bad again. And I realize, in this process of getting bad, that my Os was getting more pleasure.
But, for me, also happens the way you describe. The best sex I have, lower symptoms I will have... I think this have relation with tension...
Do you understand??? I don't know If I'm being clear... Sorry for my poor english...
Hi fidalgo,
Please do NOT apologize, u r perfectly clear!!
Best regards! :)
Demo
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For me happens this way too... But this, when I think in a Pois without threatment... What I'm saying is that my POIS improve, and, after some time, get bad again. And I realize, in this process of getting bad, that my Os was getting more pleasure.
But, for me, also happens the way you describe. The best sex I have, lower symptoms I will have... I think this have relation with tension...
Do you understand??? I don't know If I'm being clear... Sorry for my poor english...
What I feel is that it's though GOOD sex "cleans the pipes"! The process is completed. You feel like after a sneeze... complete and cleared.
When sex is not good, it doesn't seem to get completed. You climb for the summit, but the release doesn't fullfill, you are left sort of half empty/full.
Instead of like a sneeze, more like a cough, that still leaves the problem at half mast.
Sorry for the strange comparisons.
Maybe some hormonal cycle is left unterminated. Or in some cases I feel that there is still a little "gunpowder left in the barrel".... which gums up the works!!
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Hi everyone. I have a few questions related to the Rutger's study.
1. What is the theoretical basis for the vagus nerve hypothesis? Is it in anyway related to the Vagus Nerve Infection Hypothesis (VNIH) proposed by Tufts neuroscientist, Michael VanElzakker?
2. If the vagus nerve is indeed involved, would the pharmaceutical Ibudilast be a possible treatment?
3. Would electroconvulsive therapy also be a possible treatment?
Thank you.
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Under the topic of "tests, what kind, how assessed" I imagine a good start might be the neuropsychological tests that have been used to determine "chemo brain", cognitive impairment post chemotherapy, descriptions of which have sounded similar to what POISers experience.
Ive also read that PET scans were used to show cognitive impairment in the chemo brain studies, and I wonder what the diff in FMRI and a PET scan is.
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think it would be any good to email local news outlets and tell them this first of its kind research is about to happen? or maybe email the doctors (show that featured a blurb on POIS) ?
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I know this has probably been mentioned before and I should have probably spent more time reading, but I would like to know if we could get tested for all possible hormones released after orgasm and an allergy to them, in my case I would like all possible post-orgasmic pituitary hormones released after sex tested, as this is where my POIS reaction is located. Mainly because this is what I believe to be the problem. Many people here have been helped by niacin, antihistamines that reduce histamine production and/or stop some aspect of inflammation which indicates an immune response to some hormone within our own bodies. Thank you.
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The more Ive been thinking about it, I believe these guys are on the right path. The Vagus nerve can f you up in so many ways, so if an orgasm can send that nerve into some kind of excitatory shock or overdrive, it would be able to cause the majority of POIS symptoms. I have a friend who has been severely epileptic since birth due to hydrocephalus. At one point they removed part or all of her vagus nerve and lo and behold it cut down the frequency of her siezures tremendously.
I personslly have back n neck tendons that are eternally being stretched taught due to some damaged nerve that wont stop firing on my left side. Probably unrelated, but that symptom alone contributes to migrained, sprained neck muscles if i dont regularly exercise, and a strange dialation of my left eye bigger than my right eye at times when im tired or exhausted.
Im not sure how they are going to test the functioning/activation of vagus nerve after a male's orgasm, but im very excited to see the results. I hope they get enough male volunteers with confirmed cases of POIS.
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This is for everybody really.
Lately my POIS comes with heavy digestion issues. Or my POIS is very light (with niacin) or I end up with 3 or 4 days of bad stomach with nausea.
I don't know if I have developed some gastric problem (related or not to POIS), or if my POIS has just changed, and now upsets the gastric system more aggressively.
When it's bad, I can't eat anything. My nausea starts about an hour after eating, and lasts for 4 to 6 hours. It seems worse every other day. day 1 bad, day 2 light, day 3 bad, day 4 lighter... etc.
BUT, and this is why I put this here: I do vagal stimulation, and it helps tremendously. I started scratching my ears, where they would normally put the stimulator. That worked a little bit, but not if the problem was strong, and in any case didn't last long.
Lately, I've taken to scratching (as if I had an itch) the chest bone area. An area about 15 cm in diameter. Then I massage the upper middle part of the muscle that runs under the "clavicle??" on each side. I think that's what it's called. These are the bones that goo from the shoulder to below the adam's apple.
Honestly, it work in about 1 minute and lasts for a good time. And is repeatable. Not even strong medicine helps, but that does!!
I haven't tried it for other symptoms. I took niacin this last time, and probably didn't get a big enough flush. So the niacin seems to have prevented the cognitive symptoms, but has left this digestive issue behind.
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Will be trying this! And yes, it seems like digestive issues are going to have to be added to POIS symptoms. Definitely with age. I didn't have any issues as a teen, but now that I'm almost 30 I've been fighting digestive problems HARD
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Interesting. I have to admit I have had my finger twiddling in my left (cybma /conch spot) since I heard about the vagus nerve stimulation via the ear.
BTW - I had a cough years back for more than 6 months, a deep gut wrenching one. I stopped eating wheat and it went away nearly straight away. From what I understand wheat and gluten have something in them which acts as an anti-nutrient which can prevent the absorption of lots of other good things. I think your body must work out what is the bad boy.
FB
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Did the study start? :)
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Will be trying this! And yes, it seems like digestive issues are going to have to be added to POIS symptoms. Definitely with age. I didn't have any issues as a teen, but now that I'm almost 30 I've been fighting digestive problems HARD
Gah! Stop scaring me, I'm only 18 and my symptoms are hard enough already!
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Dear Dr Komisaruk
Its nice to see that POIS is being recognized and that some research is being done on this condition.
My names Bizzy and I first started posting about this condition on a forum a little over 10 years ago.
I have some strong suspicions has to what might be causing this condition. If we discount possible genetic predispositions, there maybe environmental factors such as child abuse and early life antihistamine use. I experienced both where I was regularly beaten by my parents and given chlorphenramine for dust and pollen allergies.
I have had 30+ years to think about this condition, and so am in a good position to provide a hypothesis.
I think that when the brain histamine system is upregulated via either child abuse, antihistamines or even a vaccine. This upregulation then interferes with histamine's normal functional role in orgasm. So rather helping the brain to trigger pleasure, euphoria, then calmness and possible sleepiness. Things get stuck, the constant agonist action of histamine causes a catonoic state and continuous activation of the immune system.
The psychological illness's that this condition can cause are vast. I have suffered from 20 years of depression, social anxiety and OCD. A psychiatrist would begin to question your credibility, after all, how can one person suffer from every major class of mental illness, that's unheard of right ?. This is precisely what continuous ongoing full histamine agonist action can do.
Though substances that would help lower histamine's activity such as magnesium or redirection provided by niacin, non of these address the root malfunction at a cellular level.
We are probably referring to a malfunction in a very select area of the brain such as the hypothalamus, so measuring blood or brain histamine levels might not be useful.
As you can imagine 'histamine lock' can cause disease, and one such condition is TILT. Indeed I have developed terrible sensitivity to common substances such as coffee, lemon, cheese and some household chemicals.
I've done a lot of reading and still have no clue as to how normal brain histamine function can be restored.
Bizzy (U.K)
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Bizzy, I forwarded your post to Dr. Komisaruk.
Demo
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"there maybe environmental factors such as child abuse and early life antihistamine use"
Hi bizzy
i had also a difficult childhood
always, nervous, angry, and fighting
And i think, it s important point for understanding the pois
I have also a lot of allergy
diary food, sun, peanuts, and inflammation with hot shower
but, for me i don t think so histamine is the key
i tried for one year 5 differents anti histaminic
it helps for the sun allergy, but only this that
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Hi Outsider
If you read my above post carefully, im suggesting that antihistamines may actually cause this condition by upregulating the histamine system. What happens if you block histamine receptors ?, if your lucky then just the blockade, but if not then your cells can begin to upregulate over time, making you a lot more sensitive to histamine. So you begin to develop a pathalogical disease of the very kind that you were trying to prevent with the use of antihistamines. What I have just told has actually been seen in animal studies with regards to increased sensitivity, which brings into question, did drug companies know this when they were marketing the classical antihistamines back in the 1960s and 70s.
Work done by Dr David Healy has shown that drug companies have selectively chosen to hide clinical data, in order to help market new drugs in a better light. It is upto the FDA and MHRA to ensure a system where nothing is hidden when it comes to clinical trial data. When this kind of data is manipulated, its like stealing billions from the public, its white collar crime of the highest level.
Bizzy
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Hi Outsider
If you read my above post carefully, im suggesting that antihistamines may actually cause this condition by upregulating the histamine system. What happens if you block histamine receptors ?, if your lucky then just the blockade, but if not then your cells can begin to upregulate over time, making you a lot more sensitive to histamine. So you begin to develop a pathalogical disease of the very kind that you were trying to prevent with the use of antihistamines. What I have just told has actually been seen in animal studies with regards to increased sensitivity, which brings into question, did drug companies know this when they were marketing the classical antihistamines back in the 1960s and 70s.
Work done by Dr David Healy has shown that drug companies have selectively chosen to hide clinical data, in order to help market new drugs in a better light. It is upto the FDA and MHRA to ensure a system where nothing is hidden when it comes to clinical trial data. When this kind of data is manipulated, its like stealing billions from the public, its white collar crime of the highest level.
Bizzy
Hi Bizzy,
I totally understand your trust issues toward Big Pharma. They are not angels floating in the sky, only willing the good of humanity - they are corporations, and they are in for profit. However, it is up to every individual to get good information, which is available, and to make up is own mind, and medication in general can be very useful tools. It may take time and is not always easy to make an informed opinion about a specific drug, but it worths it. You can ask questions to your physician, your pharmacist, and any other health professional, you can add in the opinion of alternative health advisers, and make up your own mind. Ultimately, once we are adults, we are the one who choose or not to swallow the pill.
The best way to avoid upregulating or downregulating from a drug or supplement is not taking it on a daily and regular basis, but only when needed. That prevent our body, which is alive and constantly adjusting itself to the situation, to create a new baseline level of anything through a constant exposure to a particular drug. However, it is not possible in any medical condition - it wouldn't be appropriate to treat high blood pressure or diabetes in an on and off regimen. But in the case of POIS, it is possible to time the prevention and treatment, as POIS is not a chronic, constant condition.
That is why I currently do not take any supplement for POIS on a daily basis, but use pre-pack and post-packs, before and after release time.
As a side note, to clarify what I have just written above about POIS not being a constant condition, I have already express my opinion that a chronic, constant POIS lasting 365 days a year is not a POIS case only, but another chronic condition is hiding behind POIS. I stick to Dr Waldinger criteria, that POIS is a self-limiting syndrome that usually disappear a week or so after ejaculation ( less for some, longer for others). When no release and no NE for weeks, POIS symptoms should not be present, and if they do, my opinion is that another chronic disease or syndrome is also present ( like depression, CFS, inflammatory bowel issues, or others ), and need to be diagnosed. Of course, if you have release every few days, POIS cycles are so near from one another that POIS becomes a chronic constant state, but that's not what I am referring to, obviously.
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Hi Quantum
My above post was very specific with regards to pharmaceutical companies, its not about a broad 'mistrust'. When I say classical antihistamines, im refering to antihistamines that are currently commonly in use to suppress allergies. I am quite certain in my mind that theres a problem with histamine upregulation with their use, though there should be a genetic variance to this susceptability.
Bizzy