Author Topic: POIS symptoms list and other information - for Dr Wise and the research team  (Read 20155 times)

Quantum

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I have read on the forum, in a recent post by Nightingale, that Dr Wise would like to have more information about POIS symptoms, and their patterns:

So with that said, she wanted me to get something going on the forum that would be useful to the team. She would like a survey of symptoms, as well as a timeline of when they begin and when they end for as many of us that we can gather information on. This would help with identifying patterns. I know there was some concerted effort already to do something like this on these forums, does anyone know where to look? Dr. Wise and the team would be happy to have that data!

Since I have discovered this forum, last November, I have spent countless hours reading, classifying and analyzing information found on it, and I have created many files in doing so.  One of this file is about POIS symptoms, as shared by members. If this can be of any help, I will share the list I have created so far , as well as the few patterns I may have found, and other desired information about onset and end of symptoms. Dr Wise will see what is of interest in this for the research team.

In my list, I have grouped the symptoms in 4 clusters.  They reflect my current hypothesis on POIS, and I think the symptom list is clearer when they are grouped in families.   Anyway, the research team will definitively take only what is of interest to them.

My list do not pretend to be exhaustive, but it is a good starting point from which other members could add to.  Same thing for the information I share about symptoms onset, symptoms disappearance, and patterns – what I share can be corrected, added, and so on, by other members, but at least my post gives a base to start from.

This will be my modest contribution for the upcoming study.  I am happy to see that forum members are invited to contribute to their own cause – Thanks to the research team for their communicative and open attitude !  :-)

Together, we have more chances to understand and solve the POIS puzzle !




POIS symptoms list


Cluster 1 :  Allergy-like symptoms

Symptoms that seem to be related to a humoral immunity reaction (hypersensitivity type I reaction), as supposed to be an underlying cause of POIS by Dr Waldinger.  Imply release of histamine, lipid inflammatory mediators, prostaglandins, leukotrienes, and so on.

- Watery/itching/burning eyes
- Runny nose
- Sneezing
- Local swelling (groin, prostate,  or tail bone)
- Anal itching
- Overall itching
- Hives/rash
- Eczema
- Asthma
- Sinus problems ( including congestion, pressure felt in the eyes )



Cluster 2 :  Flu-like symptoms

Symptoms that seem to be related to a Type IV hypersensitivity reaction ( which implication in POIS has been suggested by Dr Waldinger in his 2011 paper).  They imply the release of pro-inflammatory immune signaling (IL-1 alpha, IL-1 beta, IL-6, IL-8, TNF alpha, IFN-gamma, C-reactive protein, and other cytokines), PAF, and so on, which has not been tested in POIS so far.  Some of those symptoms seems to have a progressive and/or delayed onset, getting worst few hours later to a day after, which seems to be coherent with the type of hypersensitivity reaction that seems to be involved.

- General feeling of being ill, as in an actual flu
- Fever/perspiration/shivering
- Sore throat
- Joints pain
- Muscle pain
- Hyperalgesia/nerve pain/fibromyalgia-like pain
- Fatigue ++++
- Bad taste in the mouth/nausea



Cluster 3 :  Cognitive symptoms and other pellagra-like symptoms

In this cluster are regrouped the symptoms that seem to be related to a problem with niacin depletion (and/or kynurenic acid accumulation in the brain, for the central symptoms).   This includes cognitive, muscular, neurologic, dermatologic and gastrointestinal symptoms. The reason I have regrouped those together is because they all are pellagra-like symptoms, a condition caused by a lack of niacin, and because niacin is one of the supplement that has been shown to be efficient for a great number of forum members ( empirical success).  This hypothesis has never been the object of a study in POIS, but the consequences of the immune response diverting of the tryptophan metabolism from the serotonin pathways to the kynurenine pathways has been the subjects of many scientific papers in cancer research, in depression research, and various auto-immune disorders research.

Central, Cognitive symptoms / encephalopathy-like  symptoms :
- Cognitive problems
- Memory problems
- Brain fog
- Lack of mental focus
- Speech impairment
- Slow thinking process (bradypsychia)
- Dyslexia
- Insomnia / hypersomnia / sleep pattern disturbance
- Impaired problem solving capacity
- Difficulty in task management
- Inability to make decisions


Peripheral symptoms:
- Muscle weakness ( especially in the legs, and also “collapsing” face muscles giving a very tired
  appearance )
- Muscle twitch
- Restless leg syndrome
- Lack of coordination / clumsiness
- Tremor and other motor disturbances
- Neurological problems in the extremities (tingling in the palms and sole, burning sensations or
  numbness in the extremities)
- Sensitivity to noise, sensitivity to light (photophobia)
- Dermatitis
- Dry hair, dry scalp, dry skin
- Redness on the skin
- Gums, oral mucosa and throat problems (redness, pain, inflammation )
- Canker sores
- Stomach ache
- Diarrhea
- Abdominal cramps



Cluster 4:  Emotional/psychological symptoms

Symptoms that seem to be related to low central serotonine and/or accumulation of quinolinic acid in the brain. ( The consequences of the immune response diverting the tryptophan metabolism from the serotonin pathways to the kynurenine pathways has been the subjects of numerous scientific papers in depression research  - see, for example, a good review article at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002174/?report=classic ) - but not in POIS, which is not very surprising given its rare occurrence. )

- Anxiety
- Fatigue ++++
- Irritability
- Social phobia
- Low self-esteem
- Emotional instability / mood swings
- Emotional intensity
- Dysphoria
- Hypotension and related symptoms: reflex tachycardia, cold sweat, dizziness, exercise intolerance,
  orthostatic hypotension )
- OCD  (unfortunately, including compulsive masturbation, leading some members to a never-ending
   POIS state)
- Phobias
- Appetite disorders (anorexia/bulimia)
- anxiety urination ( frequent urge to urinate)
- Personality changes into an irritable and anti-social type
- Decreased work capacity
- Poor task management
- Difficulties interacting with others
- Feelings of loneliness and powerlessness
- Depressive mood
- Autism-like symptoms
- Impulsivity
- Paranoïd thinking




Symptoms onset information : 

Members often share their symptoms in a list, so time information about onset is relatively rare, but here are my best estimate, based on what I have read ( and other members will be able to add and/or correct on this base):

Cluster 1, allergy-like symptoms, seems, according to the forum members testimonies I have read, to appear very rapidly, in a matter of minutes.

Cluster 2, flu-like symptoms, seems to appear in a matter of minutes for general feeling of being ill, and more progressively for other symptoms like muscle pain, sore joints, and so on. Some members note a clear peak of fatigue, joint pains and muscle soreness 24 to 48 hours after O, but not all POIS sufferers have the same pattern, obviously.

Cluster 3, mostly Cognitive symptoms.seems to happen immediately for many POIS sufferers, especially brain fog.  Other cognitive symptoms also seems to appear in a relatively short time, from a few minutes to under an hour.
Cluster 4, emotional and psychological symptoms, seems to appear in usually 30 minutes to a few hours, maybe longer for some

And, from Table 2 of Dr Waldinger 2011 study, that included 45 male subjects, the data do not specify which symptoms appears first, but the great majority of subjects ( 39 on 45) had symptoms within 30 minutes after orgasm:

Age of onset                   26  +/- 13 years
Duration of complaints                   4.6 +/- 2.8 days
Time of onset POIS after ejaculation (mean)   64 +/-  219 minutes

Time of onset POIS after ejaculation   N (%)
< 30 minutes               39 (87)         
30-60 minutes               1  (2)
60-180 minutes               1  (2)
180-240 minutes               3  (7)
1440 minutes               1  (2)



Symptoms disappearance information: 

No exact time length for disappearance of particular symptoms, as each POIS sufferer as a rather unique but recurrent pattern, but as a general pattern, I can see 3 phases, with a relative length to the whole POIS cycle:
1- Onset phase ( severity and number of symptoms are increasing ) :  seems to be the first 10% to 15% of the total duration
2- Peak phase  ( severity and number of symptoms are at a peak ) :  around  40 to 50% of the total duration
3- Resolving phase ( severity and number of symptoms are decreasing ) around  35% to 45 % of the total duration

Not a rule at all, but a seven day cycle could be as follow:  1 day of onset, 3 1/2 days of peaking, 2 ½ days of resolving.

That is to say that for many members, their most severe symptoms seem to resolve in two times.  First, the severe, debilitating and disabling phase ends.  After, for a similar to shorter length of time, a milder version of POIS slowly fade away, and life may almost be back to normal.  This pattern is not unlike some similarities with a flu or other illnesses – first part is harder, than there is a recovery phase.



Some patterns I have noticed: 

In classifying POIS sub-types, as there are almost as many POIS types than there are POIS sufferers, I have tried to discern the level of severity of the symptoms a specific individual has, in any of the 4 clusters of symptoms.  I use these 3 levels of severity:

S :  severe   ( interference with normal activities,  very limiting, painful, very annoying, resist to any treatment or medication or supplementation )
M : moderate ( interference with some specific activities, call for some lifestyle changes and medication/supplements use, but adaptation possible)
L : Low ( noticeable, but do not interfere with normal activities, able to adapt, no medication, supplement or treatment needed )

So, following is the few patterns I have noticed.  It may not be the kind of patterns the research team is looking for, but it does not hurt to share them.  Please be aware that there is no structured form in members sharing of their symptoms, and many members do not give detailed report of their symptoms, so there are maybe mistaken patterns in my list.  Also, I did not read the over 900 pages of the old forum, so my review is partial. Please do not hesitate to share any information that shows any of these patterns is wrong, and I will edit my post.


- POIS sub-type with severe cognitive symptoms, and presence of moderate flu-like symptoms (type 2M/3S ) seems a very common sub-type of POIS

- I think I have never seen a case of POIS sufferer having flu-like symptoms and not also having at least some cognitive symptoms , but reverse seems possible ( cognitive symptoms, but no flu-like symptoms)

- POIS sub-type with severe cognitive symptoms, and presence moderate flu-like symptoms and moderate emotional/psychological symptoms ( type 2M/3S/4M ) is also a common sub-type of POIS
 
- POIS with cluster 1, allergy-like symptoms seems relatively rare, and usually, when allergy-like symptoms are present, I have noticed that symptoms of all 4 clusters (or at least 3 ) are also present as well. In other words, I do not remember to have read on the forum about a POIS sufferer who had only allergy symptoms, but no flu-like, cognitive or emotional symptoms.

- Sub-type of POIS with emotional symptoms but no cognitive symptoms  (my sub-type of POIS, 2L/4S ) is quite rare.  As a matter of fact, any POIS sub-type with no cognitive symptoms at all is not common, the cognitive symptoms seem to be the group of symptoms with the highest occurrence among POIS sufferers

- Extreme fatigue is one of the more common symptoms, along with cognitive symptoms.  I am not sure that I have come across a case report not having at least one of these 2 symptoms.

--
« Last Edit: February 15, 2016, 10:55:08 PM by Quantum »
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

Nightingale

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HUGE.

Great post. Forwarding this to Dr. Wise.

I'm busy today. I'll see what I can add. I agree with all of your generalizations, really. I think a questionnaire about each cluster and onset/duration might be a good approach to getting this info to the team. Polls are a bit limiting, questionnaires allow for nuance.
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Daveman

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First of all, thanks Quantum for your initial gathering of information, which, given the large variation of types and combinations, seems to be fairly in-line with a general analysis.

I seem to suffer both Cluster 2 and Cluster 3 predominantly, at least as far as I remember from "before Niacin days". And certainly, the niacin has helped reduce the cluster 3 symptoms greatly.

For me however I had what could be perhaps clasified as flu symptoms within minutes of the orgasm. They aren't on your list of flu symptoms, but they seem to most reflect such a condition like: a general yuck feeling overtaking the body, almoast as though a poison was flooding from top to bottom. Perhaps a bit of nausia, bad taste in the mouth. That was my indication that the session would be stronger.

Then over about 24 hours the full flue like symptoms would set in.

On day 2 and 3, I would get sometimes frightful levels of paranoia. preceded a day earlier by brainfolg.

Niacin has wiped out everything except (sometimes) muscle joint and nerve pains. More like a fibromyalgia. 80% of the time, I go about life as though I don't have POIS (basically foretting that its there. The other 20% can have varying degrees of POIS. 2% bad, 8% moderate and 10& just some muscle pain.

Presently I am having a moderate session, with muscle, joint and nerve pain. This is the first moderate session in months of one O per week.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

BluesBrother

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Great post.

Great post, indeed!

Polls are a bit limiting, questionnaires allow for nuance.

I also think a questionnaire would be better. Nightingale, you seem to suggest to have a separate questionnaire for each group of symptoms? Why not have one big questionnaire?

When it comes to putting together the questionnaire, would Dr. Wise like to do that, based on our input, or will we do that ourselves (we should of course cross-check with Dr. Wise to make sure questions are formulated in the best way for collecting information)?

One possible layout could be (for each symptom)
[symptom name] [checkbox] [onset after ejaculation] [duration] [severity]

I looked into surveymonkey, surveygizmo, siteform, Google forms and some other survey tools. All of these tools do not allow such a layout. It would thus be necessary to code the form in html / javascript directly. If someone is an expert in coding forms, please step forward. If not, I could give it a try. We would then upload the form to a server (I could do that) and distribute the link.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

demografx

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I have read on the forum, in a recent post by Nightingale, that Dr Wise would like to have more information about POIS symptoms, and their patterns:

So with that said, she wanted me to get something going on the forum that would be useful to the team. She would like a survey of symptoms, as well as a timeline of when they begin and when they end for as many of us that we can gather information on. This would help with identifying patterns. I know there was some concerted effort already to do something like this on these forums, does anyone know where to look? Dr. Wise and the team would be happy to have that data!

Since I have discovered this forum, last November, I have spent countless hours reading, classifying and analyzing information found on it, and I have created many files in doing so.  One of this file is about POIS symptoms, as shared by members. If this can be of any help, I will share the list I have created so far , as well as the few patterns I may have find, and other requested information about onset and end of symptoms. Dr Wise will see what is of interest in this for the research team.

In my list, I have grouped the symptoms in 4 clusters.  They reflect my current hypothesis on POIS, and I think the symptom list is clearer when they are grouped in families.   Anyway, the research team will definitively take only what is of interest to them.

My list do not pretend to be exhaustive, but it is a good starting point from which other members could add to.  Same thing for the information I share about symptoms onset, symptoms disappearance, and patterns – what I share can be corrected, added, and so on, by other members, but at least my post gives a base to start from.

This will be my modest contribution for the upcoming study.  I am happy to see that forum members are invited to contribute to their own cause – Thanks to the research team for their communicative and open attitude !  :-)

Together, we have more chances to understand and solve the POIS puzzle !




POIS symptoms list


Cluster 1 :  Allergy-like symptoms

Symptoms that seems to be related to a humoral immunity reaction (hypersensitivity type I reaction), as supposed to be an underlying cause of POIS by Dr Waldinger.  Imply release of histamine, lipid inflammatory mediators, prostaglandins, leukotrienes, and so on.
- Watery/itching/burning eyes
- Runny nose
- Sneezing
- Local swelling (groin, prostate,  or tail bone)
- Anal itching
- Overall itching
- Hives/rash
- Eczema
- Asthma
- Sinus problems ( including congestion, pressure felt in the eyes )



Cluster 2 :  Flu-like symptoms

Symptoms that seems to be related to a Type IV hypersensitivity reaction ( which implication in POIS has been suggested by Dr Waldinger in his 2011 paper).  They imply the release of pro-inflammatory immune signaling (IL-1 alpha, IL-1 beta, IL-6, IL-8, TNF alpha, IFN-gamma, C-reactive protein, and other cytokines), PAF, and so on, which has not been tested in POIS so far.  Some of those symptoms seems to have a progressive and/or delayed onset, getting worst few hours later to a day after, which seems to be coherent with the type of hypersensitivity reaction that seems to be involved.

- Fever/perspiration/shivering
- Sore throat
- Joints pain
- Muscle pain
- Hyperalgesia
- Fatigue ++++



Cluster 3 :  Cognitive symptoms and other pellagra-like symptoms

In this cluster are regrouped the symptoms that seems to be related to a problem with niacin depletion (and/or kynurenic acid accumulation in the brain, for the central symptoms).   This includes cognitive, muscular, neurologic, dermatologic and gastrointestinal symptoms. The reason I have regrouped those together is because they all are pellagra-like symptoms, a condition caused by a lack of niacin, and because niacin is one of the supplement that has been shown to be efficient for a great number of forum members ( empirical success).  This hypothesis has never been the object of a study in POIS, but the consequences of the immune response diverting of the tryptophan metabolism from the niacin/serotonin pathways to the kynurenine pathways has been the subjects of many scientific papers in cancer research, in depression research, and various auto-immune disorders research.

Central, Cognitive symptoms / encephalopathy-like  symptoms :
- Cognitive problems
- Memory problems
- Brain fog
- Lack of mental focus
- Speech impairment
- Slow thinking process (bradypsychia)
- Dyslexia
- Insomnia / hypersomnia / sleep pattern disturbance
- Impaired problem solving capacity
- Lack of coordination / clumsiness
- Tremor and other motor disturbances

Peripheral symptoms:
- Muscle weakness ( especially in the legs, and also “collapsing” face muscles giving a very tired
  appearance )
- Muscle twitch
- Restless leg syndrome
- Neurological problems in the extremities (tingling in the palms and sole, burning sensations or
  numbness in the extremities)
- Sensitivity to noise, sensitivity to light (photophobia)
- Dermatitis
- Dry hair, dry scalp, dry skin
- Redness on the skin
- Gums, oral mucosa and throat problems (redness, pain, inflammation )
- Canker sores
- Stomach ache
- Diarrhea
- Abdominal cramps



Cluster 4:  Emotional/psychological symptoms

Symptoms that seems to be related to low central serotonine and/or accumulation of quinolinic acid in the brain. ( The consequences of the immune response diverting the tryptophan metabolism from the niacin/serotonin pathways to the kynurenine pathways has been the subjects of numerous scientific papers in depression research  - see, for example, a good review article at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002174/?report=classic ) - but not in POIS, which is not very surprising given its rare occurrence. )

- Anxiety
- Fatigue ++++
- Irritability
- Social phobia
- Low self-esteem
- Emotional instability / mood swings
- Emotional intensity
- Dysphoria
- Hypotension and related symptoms: reflex tachycardia, cold sweat, dizziness, exercise intolerance,
  orthostatic hypotension )
- OCD  (unfortunately, including compulsive masturbation, leading some members to a never-ending
   POIS state)
- Phobias
- Appetite disorders (anorexia/bulimia)
- anxiety urination ( frequent urge to urinate)
- Personality changes into an irritable and anti-social type
- Decreased work capacity
- Poor task management
- Difficulties interacting with others
- Feelings of loneliness and powerlessness
- Depressive mood
- Autism-like symptoms
- Impulsivity





Symptoms onset information : 

Members often share their symptoms in a list, so time information about onset is relatively rare, but here are my best estimate, based on what I have read ( and other members will be able to add and/or correct on this base):

Cluster 1, allergy-like symptoms, seems, according to the forum members testimonies I have read, to appear very rapidly, in a matter of minutes.

Cluster 2, flu-like symptoms, seems to appears more progressively, and some members note a clear peak of fatigue, joint pains and muscle soreness 24 to 48 hours after O, but not all POIS sufferers have the same pattern, obviously

Cluster 3, mostly Cognitive symptoms.seems to happen immediately for many POIS sufferers, especially brain fog.  Other cognitive symptoms also seems to appear in a relatively short time, from a few minutes to under an hour.
Cluster 4, emotional and psychological symptoms, seems to appear in usually 30 minutes to a few hours, maybe longer for some

And, from Table 2 OF Dr Waldinger 2011 study, that included 45 male subjects, the data do not specify which symptoms appears first, but the great majority of subjects ( 39 on 45) had symptoms within 30 minutes after orgasm:

Age of onset                   26  +/- 13 years
Duration of complaints                   4.6 +/- 2.8 days
Time of onset POIS after ejaculation (mean)   64 +/-  219 minutes

Time of onset POIS after ejaculation   N (%)
< 30 minutes               39 (87)         
30-60 minutes               1  (2)
60-180 minutes               1  (2)
180-240 minutes               3  (7)
1440 minutes               1  (2)



Symptoms disappearance information: 

No exact time length for disappearance of particular symptoms, as each POIS sufferer as a rather unique but recurrent pattern, but as a general pattern, I can see 3 phases, with a relative length to the whole POIS cycle:
1- Onset phase ( severity and number of symptoms are increasing ) :  seems to be the first 10% to 15% of the total duration
2- Peak phase  ( severity and number of symptoms are at a peak ) :  around  40 to 50% of the total duration
3- Resolving phase ( severity and number of symptoms are increasing ) around  35% to 45 % of the total duration

Not a rule at all, but a seven day cycle could be as follow:  1 day of onset, 3 1/2 days of peaking, 2 ½ days of resolving.

That is to say that, for many members, it seems that their most severe symptoms seem to resolve in two times.  First, the severe, debilitating and disabling phase ends.  After, for a similar to shorter length of time, a milder version of POIS slowly fade away, but life may almost be back to normal.  This pattern is not unlike some similarities with a flu or other illnesses – first part is harder, than there is a recovery phase.



Some patterns I have noticed: 

In classifying POIS sub-types, as there are almost as many POIS type than there is POIS sufferers, I have tried to severity of the symptoms a specific individual has, n any of the 4  clusters of symptoms.  I use these 3 levels of severity:

S :  severe   ( interference with normal activities,  very limiting, painful, very annoying, resist to any treatment or medication or supplementation )
M : moderate ( interference with some specific activities, call for some lifestyle changes and medication/supplements use, but adaptation possible)
L : Low ( noticeable, but do not interfere with normal activities, able to adapt, no medication, supplement or treatment needed )

So, following is the few patterns I have noticed.  It may not be the kind of pattern the research team is looking for, but it does not hurt to share them.  Please be aware that there is no structured form in members sharing of their symptoms, and many members do not give detailed report of their symptoms, so there are maybe mistaken patterns in my list.  Also, I did not read the over 900 pages of the old forum, so my review is partial. Please do not hesitate to share any information that prove one of these patterns wrong, and I will edit my post.


- POIS sub-type with severe cognitive symptoms, and presence of moderate flu-like symptoms seems a very common sub-type of POIS

- I think I have never seen a case of POIS sufferer having flu-like symptoms and not also having at least some cognitive symptoms , but reverse seems possible ( cognitive symptoms, but no flu-like symptoms)

- POIS sub-type with severe cognitive symptoms, and presence moderate flu-like symptoms and moderate emotional/psychological symptoms seems is also a common sub-type of POIS
 
- POIS with cluster 1, allergy-like symptoms seems relatively rare, and usually, when allergy-like symptoms are present, I noticed that symptoms of all 4 clusters are also present as well. In other words, I do not remember to have read on the forum about a POIS sufferer who had only allergy symptoms, but no flu-like, cognitive or emotional symptoms.

- Sub-type of POIS with the emotional symptoms but no cognitive symptoms  (my type of POIS) is quite rare.  As a matter of fact, any POIS sub-type with no cognitive symptoms at all is not common, the cognitive symptoms seems to be the group of symptoms with the highest occurrence among POIS sufferers

- Extreme fatigue is one of the more common symptoms, along with cognitive symptoms.  I am not sure that I have come across a case report not having at least one of these 2 symptoms.

--







Quantum!


« Last Edit: February 23, 2015, 05:22:24 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

Nightingale

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Nightingale, you seem to suggest to have a separate questionnaire for each group of symptoms? Why not have one big questionnaire?

When it comes to putting together the questionnaire, would Dr. Wise like to do that, based on our input, or will we do that ourselves (we should of course cross-check with Dr. Wise to make sure questions are formulated in the best way for collecting information)?

One possible layout could be (for each symptom)
[symptom name] [checkbox] [onset after ejaculation] [duration] [severity]

I looked into surveymonkey, surveygizmo, siteform, Google forms and some other survey tools. All of these tools do not allow such a layout. It would thus be necessary to code the form in html / javascript directly. If someone is an expert in coding forms, please step forward. If not, I could give it a try. We would then upload the form to a server (I could do that) and distribute the link.

Sorry I made it confusing, I am NOT in favor of multiple questionnaires.

I think what you just suggested is the best course of action right now. As far as what we think, and what Dr. Wise would like, I think we should send her a proposal and she would surely give us feedback! That would be best, collaborative. I took some HTML when I was pursuing an associates in IT, but I would be rusty to say the least. It could come back to me though, if I had some help. Maybe we can start working on this BluesBrother? I think user "serotonergic" is a computer science major in college, maybe he could help. I'll send him a PM.

I will post a call out for web programmers in a new thread!
Turmeric and Rosemary 30-45 minutes before orgasm for anti-inflammatory and immune support has helped me a lot. Faster and easier than niacin approach.

Quantum

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Thanks, everyone, for your positive comments :)


I seem to suffer both Cluster 2 and Cluster 3 predominantly, at least as far as I remember from "before Niacin days". And certainly, the niacin has helped reduce the cluster 3 symptoms greatly.

Hi Daveman,

I am glad you mention this, because that points to one of the main reason I have begun to sort the symptoms in clusters and define POIS sub-types - in order to try an see what supplements is more effective against which symptoms cluster(s).

And for sure, niacine seems to be at its best for cluster 3 symptoms, and helping a bit for cluster 2 in some cases. 

I have gathered more of this kind of information, and when ready, will share it as well



For me however I had what could be perhaps clasified as flu symptoms within minutes of the orgasm. They aren't on your list of flu symptoms, but they seem to most reflect such a condition like: a general yuck feeling overtaking the body, almoast as though a poison was flooding from top to bottom. Perhaps a bit of nausia, bad taste in the mouth. That was my indication that the session would be stronger.

Then over about 24 hours the full flue like symptoms would set in.

On day 2 and 3, I would get sometimes frightful levels of paranoia. preceded a day earlier by brainfolg.

Niacin has wiped out everything except (sometimes) muscle joint and nerve pains. More like a fibromyalgia. 80% of the time, I go about life as though I don't have POIS (basically foretting that its there. The other 20% can have varying degrees of POIS. 2% bad, 8% moderate and 10& just some muscle pain.


thanks for your input, Daveman, I have updated my post accordingly.  I have added the symptoms you have mentioned, like "Paranoïd thinking", in cluster 4, psychological symptoms, as well as others in the flu-like symptoms.  I have also updated the section about the rapidity of onset of flu-like symptoms.
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

BluesBrother

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Following Daveman's suggestion, we can discuss the design of a questionnaire in this thread.

The following is on my mind:

When we ask for symptom onset and duration, we need to be clear whether this refers to a situation in which someone takes medication (e.g. Niacin) or follows other strategies (e.g. diet, fasting) or to 'pure' POIS - otherwise we get a biased picture of 'pure' POIS. One possibility would be to ask to describe POIS in the absence of medication and behavioral changes. However, it might well be that people do not remember how their POIS materialized in the absence of medication or adjustment of behavior - and that it is impossible to try (e.g. because someone is on a long-term treatment with e.g. hormones) or because it would be too painful.

In any case, these background conditions should be indicated in the questionnaire:

- In the case in which people remember 'pure' POIS, we could allow them to fill in two versions of the questionnaire - one for 'pure' POIS, the other for their current experience given medication and behavioral adjustments.

- In the case where people do not remember 'pure' POIS, we should ask them to indicate their current medication and behavior.

- For people who are experiencing 'pure' POIS since they are not using medication nor have adjusted their behavior, this should also be indicated.

I hope this is not too confusing and you can somewhat follow my thoughts.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

Daveman

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It's a good point about potential remedial influences.

Surely they will have to know about other medications, blood pressure control, testosterone therapy, SSRIs, NSAIDs etc. and may or may not preclude doing the testing if any of those are used.

I'm not sure if anyone who is on any type of "POIS remedy" would be tested. Perhaps, and I really don't know for sure, but anyone undergoing the testing may be asked to abstain from any medications aimed at reducing POIS, during testing and perhaps before and after for a certain period.

Some treatments like sperm allergy treatment would certainly have to be mentioned. I suppose if that is mentioned  it would be good to know how far along in the program they are and if or by how much it has influenced symptoms.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Daveman

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Following this line, the questionaire should have a general section that sets the base. Something that allows to perhaps categorize groupings (they not us) and as Blues Brother says indicates any influences in results due to POIS remedies.

There was a questionaire quite some time ago that asked all the questions about runny-nose, flu-like,achy muscles etc. etc. etc. The objective of the questionaire was to see if there were any groupings or not, and to try to see if participants could be categorized as pertaining to one group or another.

But, perhaps an expert in the vagus nerve could be better adapted at seeing groupings that pertain to this etiology. So if we pre-group we may be confusing the data.

I know that niacin helps me tremendously, and this could mean that I have some sort of ejaculation induced vitamin deficiency, which could put me into that group, others have suggested that it's a vasodilatory problem, and niacin also resolves that situation. But what we don't know truthfully is the etiology. It could also well be vagal.

I mean there are things that I'd like to think and beleive. But it's like judging a man without a trial. You may condemn him to death just becasue you think he did it.

I've given up imagining what POIS is. But I think we just set the base with fact and let the experts decide.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

Daveman

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In response to your post on the other thread.

The point about being able to correlate answeres against each other. Is this something that is/can be done by the research team, or something that is done rpior to showing results.

If it's something that they can do based on raw data, that would be wonderful, a useful tool.

WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

BluesBrother

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There was a questionaire quite some time ago that asked all the questions about runny-nose, flu-like,achy muscles etc. etc. etc. The objective of the questionaire was to see if there were any groupings or not, and to try to see if participants could be categorized as pertaining to one group or another.
Interesting. Does this questionnaire still exist somehwere - maybe we can draw some inspiration from it.

But, perhaps an expert in the vagus nerve could be better adapted at seeing groupings that pertain to this etiology. So if we pre-group we may be confusing the data.
I completely agree - we should not pre-group / pre-cluster the data. No theory should be preimposed while collecting the data.

In response to your post on the other thread.

The point about being able to correlate answeres against each other. Is this something that is/can be done by the research team, or something that is done rpior to showing results.

If it's something that they can do based on raw data, that would be wonderful, a useful tool.
That is something the research team can do. We will provide them with the raw data as it comes in. To give you an impression, this is how the raw data from the demonstration questionnaire looks like - and to which we would give the research team access (I am hiding the forum member names here) https://pois.wufoo.eu/reports/test-report/

The data can be monitored in real time as it is coming in - it can also be exported to different formats. We can also enable notification emails / rss for the research team to be notified when there are new entries (if they find this useful).
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

BluesBrother

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1) Print out the following questionnaires and fill out:
        #7A ("POIS Symptoms");
        #7B ("Your POIS History");
        #7C (2 pages, questions 1- 21 -- ***2 pages!);
        #7D ("SCL-90" -- only pages 2,3 and 4 -- 90 questions)


Would it make sense to incorporate all the fields of the Rutgers questionnaires into the web questionnaire (and - where applicable - augment them by duration information?) We need to start coordinating the design of the questionnaire with the research team. Nightingale has contacted Dr. Wise. Let's see what she is going to say.
Used to have brain fog, flue-like symptoms, un-refreshing sleep, extreme exhaustion, muscle and joint pain, digestive problems, social anxiety, urge to urinate frequently.
Used niacin in the past. Now using nanna1's maintenance stack. Exhaustion and brain fog now main problem. 3-day POIS cycle

G-man

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But, perhaps an expert in the vagus nerve could be better adapted at seeing groupings that pertain to this etiology. So if we pre-group we may be confusing the data.
This
31 years old. POIS since puberty. Cognitive and physical symptoms.

demografx

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  • All of us working together to defeat POIS!

1. I've given up imagining what POIS is.

2. But I think we just set the base with fact and let the experts decide.


1. Me, too.

2. Excellent plan!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

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

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

ve-to

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these are my symptoms after 15 minutes from "O"


Cluster 1 :  Allergy-like symptoms


- Watery/itching/burning eyes  NO
- Runny nose  NO                     
- Sneezing
- Local swelling (groin, prostate,  or tail bone)  NO
- Anal itching  NO
- Overall itching NO
- Hives/rash NO
- Eczema NO
- Asthma NO
- Sinus problems ( including congestion, pressure felt in the eyes ) NO



Cluster 2 :  Flu-like symptoms

- General feeling of being ill, as in an actual flu NO
- Fever/perspiration/shivering NO
- Sore throat NO
- Joints pain NO
- Muscle pain YES +
- Hyperalgesia/nerve pain/fibromyalgia-like pain  ( YES, neuropaty feet itchy +)
- Fatigue                                                       (YES ++++ i can run 1/20 distance compare to no pois day, i get a lot of endurance test about Pois/no pois days )
- Bad taste in the mouth/nausea NO



Cluster 3 :  Cognitive symptoms and other pellagra-like symptoms

- Cognitive problems (YES ++++)
- Memory problems  (YES, i I dropped out of college because all that studying was deleted from pois , is how to fight against the memory . I start from the beginning every time  Can not remember all the steps mathematical example . And ' useless)
- Brain fog  (YES ++++  live become like auto pilot enable)
- Lack of mental focus (yes ++++)
- Speech impairment  (yes ++)
- Slow thinking process (bradypsychia) (yes like pass from intel i7 to intel 80286)
- Dyslexia
- Insomnia / hypersomnia / sleep pattern disturbance / (yes hypersomnia)
- Impaired problem solving capacity  (yes but not impaired, just slow)
- Difficulty in task management (Yes ++)
- Inability to make decisions (YES +)


Peripheral symptoms:
- Muscle weakness ( especially in the legs, and also “collapsing” face muscles giving a very tired
  appearance )  NO
- Muscle twitch NO
- Restless leg syndrome NO
- Lack of coordination / clumsiness NO
- Tremor and other motor disturbances NO
- Neurological problems in the extremities (tingling in the palms and sole, burning sensations or
  numbness in the extremities) YES +
- Sensitivity to noise, sensitivity to light (photophobia) (little bit)
- Dermatitis NO
- Dry hair, dry scalp, dry skin YES
- Redness on the skin NO
- Gums, oral mucosa and throat problems (redness, pain, inflammation ) NO
- Canker sores NO
- Stomach ache  YES ++
- Diarrhea NO
- Abdominal cramps Sometimes



Cluster 4:  Emotional/psychological symptoms

- Anxiety  YES
- Fatigue  YES ++++
- Irritability BIG YES +++++
- Social phobia  YES +
- Low self-esteem YES ++
- Emotional instability / mood swings YES +++
- Emotional intensity BIG YES +++++
- Dysphoria YES +
- Hypotension and related symptoms: reflex tachycardia, cold sweat, dizziness, exercise intolerance,
  orthostatic hypotension )  YES Dizziness +++
- OCD  (unfortunately, including compulsive masturbation, leading some members to a never-ending
   POIS state) Yes like to be always need to masturb
- Phobias NO
- Appetite disorders (anorexia/bulimia) after each orgasm become hungry like wolf.
- anxiety urination ( frequent urge to urinate) NO
- Personality changes into an irritable and anti-social type  YES Irritability
- Decreased work capacity YES +++ (lost many jobs couse fisical fatigue and irritability)
- Poor task management  YES
- Difficulties interacting with others  YES +++
- Feelings of loneliness and powerlessness YES +++
- Depressive mood  YES ++
- Autism-like symptoms  YES +++++
- Impulsivity YES +++
- Paranoïd thinking NO


add:

Nician get me heart problem like arithmia so i endend up.  b6 toxicity get me peripheral neuropathy ( 1 year long itcy ) now solved to 90%. bupropion get me energy but don't solve pois cluster 3 problem.
« Last Edit: March 10, 2015, 09:56:13 AM by vetro79 »

sameer7777

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  • pls send what ever working pls thankyou
Well described
I agree with all the symptoms it's all same for me too
Thankyou
pls don't expose me.
AFTER SEX/MASTERBATION (FLU LIKE SYMPTOMS)
1)BACK NECK PAIN GOES TO DOWN SPINE
2)NERVES LIKE SQUEEZED OUT
3)MORNING FEET NERVES PAIN
4)NASAL INFLAMMATION
5)BRAIN FOG
6)DEPRESSION
7)HIGH SUGAR LEVELS (TRIED INSULIN FOR 1 YEAR MAKE ME MORE SICK

Prancer

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1. I've given up imagining what POIS is.

2. But I think we just set the base with fact and let the experts decide.


1. Me, too.

2. Excellent plan!

Omg, same here you guys! Like I've never seen so many conflicting ideas and conclusions for any ailment. Some of them are downright wacky, flying in the face of even elementary science (seriously?), but most fortunately seem to have a solid real-world foundation and could *potentially* be our cure! But I want to get better, not create more stress chasing after potentially ineffective quick fixes.

...So I like your plans Demo & Daveman! I'm also gonna watch the research carry on and let the experts figure this out (I know, what a novel idea!). I love my fellow POISers :-* lol, and want everyone to get better just as much as myself, so I want to see a real cure.  Of course, I'm still open to anything (that's realistic), but in general, as a personal decision, I'm just gonna wait for it to be figured out the proper way.

poiseidon

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I've given up imagining what POIS is.

Hey Dave. It's not so difficult to figure it out. I know exactly what POIS is. It's the most fucked up illness known by man for the simple reason it makes it awkward to explain why you're not doing fine to other people and 99.99% of doctors think you're crazy. That's what it is. :P
« Last Edit: March 19, 2015, 03:37:03 AM by poiseidon »
After spending loads on supplements I found out that the only thing that works is abstinence. Full stop. And it's free.
Meditation if done correctly is great too.
Also avoiding computers produce faster recoveries and fewer temptations.

G-man

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Quantum, when you have time, could you read this and let us know what you think?

You can find the full PDF here:
http://www.researchgate.net/publication/8395744_Effects_of_sexual_arousal_on_lymphocyte_subset_circulation_and_cytokine_production_in_man

ABSTRACT
Sexual arousal and orgasm induce an increase in sympathetic activity as well as in catecholamine and prolactin plasma concentrations. However, the effects of sexual arousal and orgasm on immune functions in man are unknown. Thus, this study investigated the effects of masturbation-induced orgasm on lymphocyte circulation and cytokine production in healthy young males.
In a crossover design, 11 volunteers completed an experimental condition in which they were asked to masturbate until orgasm and to participate in a control condition without sexual activity. Blood was drawn continuously for determination of endocrine parameters. In addition, leukocyte and lymphocyte subsets were analyzed via flow cytometry, and the production of lipopolysaccharide-induced interleukin 6 and tumor necrosis factor alpha was measured before and then 5 and 45 min after the orgasm.
The results confirmed transient increases in adrenaline and prolactin plasma concentrations. Sexual arousal and orgasm increased the absolute number of leukocytes, in particular natural killer cells (CD3-CD16+CD56+), in the peripheral blood. In contrast, T cell (CD3+) and B cell (CD3-CD20+) subpopulations as well as the production of interleukin 6 and tumor necrosins factor alpha remained unaffected by sexual activity.
These findings demonstrate that components of the innate immune system are activated by sexual arousal and orgasm.
31 years old. POIS since puberty. Cognitive and physical symptoms.