Author Topic: Etcosp's case - discussion  (Read 637 times)

etcosp

  • Newbie
  • *
  • Posts: 35
Etcosp's case - discussion
« on: January 29, 2022, 05:47:25 PM »
This thread (in progress) is meant to summarize my POIS case and related information, and allow people to discuss them.
« Last Edit: January 29, 2022, 06:44:43 PM by etcosp »

etcosp

  • Newbie
  • *
  • Posts: 35
« Last Edit: March 10, 2022, 11:30:41 AM by etcosp »

etcosp

  • Newbie
  • *
  • Posts: 35
Re: Etcosp's case - discussion
« Reply #2 on: January 29, 2022, 05:50:07 PM »
Presentation :


I have had my first sexual experience in 2014/2015, but was never really active so I can't tell if I've had POIS since the beginning of puberty. I first made the link between rampant fatigue and O in 2017. At that time, most of my symptoms weren't very present and the strong fatigue was going away after a night of sleep. I'm now (in January 2022) 18, with a normal BMI, and my symptoms stay strong for about 2 days.


Global notes:
  • I have respiratory allergies for part of the year and asthma (including exercise-induced).
  • I have recurring psoriasis.
  • I often have very dry skin which makes it irritated.
  • use of any of my hands for a mid amount of time. (10+ min) often makes them super cold. This can happen to a single hand (vasoconstriction : sympathetic system activation ?).
  • I always have a dry mouth in the morning (but I snore), often partially dry at other times of the day (especially in the evening - linked to anxiety periods ?).

Trait characters :
  • I have always tended to be anxious (generalized anxiety, including social anxiety), with strong OCD and I'm insomniac.
  • I am subject to mood changes and irritability.
  • I am a major procrastinator (it took me 5 months to write this summary).

Additional information about me may help understanding my case. Read them in the extended presentation, in the "Others" category.


Due to the particularity of my profile, I believe that likely my POIS is linked to my other particularities.
« Last Edit: February 03, 2022, 08:21:19 AM by etcosp »

etcosp

  • Newbie
  • *
  • Posts: 35
Re: Etcosp's case - discussion
« Reply #3 on: January 29, 2022, 05:52:29 PM »
Triggers and symptoms :


Triggers of abnormal symptoms:
  • orgasm/ejaculation (at least since 2017 but symptoms worsened)
  • sexual arousal (at least since 2017 but symptoms worsened) ?
  • strong emotions (sadness/stress) (more recent)
  • naps (new to me so I have no idea for how long)


Symptoms - very strong for 2-3 days - after orgasm/ejaculation (POIS symptoms) :
  • cognitive difficulties - difficulty concentrating, finding words, remembering things, etc.
  • non-positional dizziness, mainly 24h after O (precisions in notes).
  • mental overload : light, noise and thoughts causing and worsening the dizziness.
  • mental difficulties - almost no motivation, impulsiveness with irritability : sometimes depression, anxiety, often obsessions, etc.
  • overall weakness/muscle pain - strongest in the lower back.
  • darker, blurred vision.
  • burning eyes. (not every time?)
  • feeling of irritation in the penis.
  • insomnia.
  • mild constipation ?
  • shortness of breath ?
  • very lite nasal congestion, nose not runny.
  • rarely mild headaches.


Notes clearly related to orgasm/ejaculation (possibly linked with POIS) :
  • my symptoms (at least the mental ones) are reduced by over 70% at night - I can't tell exactly when since my circadian rythm is not regular.
  • my symptoms peak in intensity 24h after O (which is the next evening).
  • contact with cold water relieves me from my symptoms (mental and cognitive, probably physical ones as well ?) for about 2 hours.
  • I have premature ejaculation (improved by low histamine diet).
  • I've never had a sexual relation with someone, so I can't tell whether or not it would affect my symptoms.
  • during sexual stimulation before orgasm, my mouth/nose systematically fills with mucus (sympathetic system overactivation/immune activation ?). I also have gas. The amount and density of mucus seems to be proportional to the intensity of my symptoms.
  • it seems that the more sexually stimulated I get, the stronger my symptoms are ?
  • if I watch pornography during stimulation, the orgasm itsself doesn't come with pleasure. I have an important pleasure watching (still far in intensity from the one that comes with a normal orgasm, but more important than usual) but not much pleasure during the orgasm following that time watching.
  • following O I have a 10-20 min period with apathy, having my jaw muscles dropped and feeling like my pleasure storage is empty.
  • on days 6 and 7 post O I have a strong loss of motivation, and on days 9 and 10 post O I feel super monotonous : either in a neutral or negative mental state (end of the action of endorphins associated with O ?).
  • some of my symptoms at least (e.g. mental, cognitive and physical weakness, dark and blurred vision) appear at the time of O/in the next seconds, others the day after O (muscle pain), maybe due to long inflammation.
  • when having POIS it's like I can't get the adequate amount of energy in a situation. Awakening is especially hard and no matter how hard I try to do a mental effort, my mind isn't properly stimulated.
  • the skin around my penis is very swollen in the first few hours after ejaculation (inflammation ?). The intensity varies a lot, so it's not always shocking.
  • my penis is often hypersensitive when I have POIS - when I feel it irritated. When it's a thing, I have pleasure rushes from local contacts and dozens of erections/day, quick and not necessarily triggered by them.
  • I have systematically an uncomfortable feeling in the penis 4-5 days after O for about 2 days (maybe it completely stops being swollen ?).
  • the first urination after O is very slow to start and if I try to speed it up it gets painful. That doesn't happen in other situations (penis getting swollen after O is probably enough to explain that).
  • lowering my back position when having POIS isn't continuous, it drops by levels like a bad machine. That's the only motor impairment I notice (but not the only physical one).
  • my resting heart rate and blood pressure when having POIS seem pretty normal : 75+ heartbeats/min (85+ usually but I stay in bed the whole day when having POIS) and blood pressure 120-140/70 (same results usually).
  • my hunger is not diminished by POIS - perhaps even the opposite.
  • I may have digestive symptoms but I struggle tracking them.


Symptoms - for 2 to 4 hours - after sexual stimulation, even really short and involuntary like repeated contact with clothes while being locally sensitive :
  • global fatigue.
  • pollakiuria/polyuria with strong sensation of irritation in the penis relieved only in the 20 min following an urination.


Symptoms - for a few hours or until the end of the day - after strong emotions (strong sadness/strong stress) :
  • fatigue with cognitive difficulties, saturation and mental difficulties.


Symptoms - for 2 to 4 hours - after naps during the day sometimes :
  • pollakiuria/polyuria with strong sensation of irritation in the penis relieved only in the 20 min following an urination.
  • very strong sensation of heat (especially at the level of the head?)
  • fatigue.
« Last Edit: January 31, 2022, 10:04:12 AM by etcosp »

etcosp

  • Newbie
  • *
  • Posts: 35
Re: Etcosp's case - discussion
« Reply #4 on: January 29, 2022, 05:58:10 PM »
Medical analysis results :


Global helpful notes when looking at the medical results :
  • I live in France so July is summer and January is winter.
  • I was in depression between December 2019 and March 2021. That probably shows on the blood tests of 2021, since a lot of my life habits were ruined including :
    * going out.
    * exercising.
    * eating specifically during meals (I gained 20 pounds during winter of 2020-2021, which may be linked to a temporary health issue during that period of time).
    * living following a diurn rythm (I sleep from 3-4 to 10-11 AM).

All blood test results can be found here.
Following, the anomalies shown in most blood tests/checked once, and analysis of them :


Immune system components :

Leukocytes : 4.0 < 4.2 < 11.0 Giga/L
   Chronically low (with one exception) : the reference range in other countries is often ~5 - 11 so I wouldn't be considered in the norm everywhere. Such results can be seen for example in autoimmune disorders sufferers. The 3 results seem to be coherent with the intensity of my symptoms during the periods of the analysis ?

Vitamins :

25-Hydroxyvitamin D : 54.3 < 75 < 150 nmol/L
   Not a really rare result in healthy people.
B9 Vitamin : 9.4 < 11.3 < 61.6 nmol/L
   To be checked again. This single result isn't significant because not necessarily a thing over a long period.

Diverse :

Transferrin saturation coefficient : 20 < 40 < 41.2%
   ?
Magnesium : 0.70 < 0.91 < 0.94 mmol/L
   ?


Note : Some of the anomalies I indicated are in the reference range (but close to its limit). I found them interesting because important results that can be related to some health conditions.



Specific genetic results from my 23andme test (important genes, notable mutations already noticed) can be found here.


Mutations I have I found interesting :

- rs361525 : ~6% (AG) - associated with a much greater TNF-a plasma level. Mutation far more frequent in people with psoriasis (~16%) and OCD, which I both have.
« Last Edit: January 30, 2022, 09:57:26 PM by etcosp »

etcosp

  • Newbie
  • *
  • Posts: 35
Re: Etcosp's case - discussion
« Reply #5 on: January 29, 2022, 06:00:36 PM »
Trials to reduce the symptoms :


Medications taken before strong POIS developed :

2006 :

  • antibiotics for a few days.


2014 - 2017 :

  • 2nd gen H1 antihistamine (desloratadine) about 20 days each year.


Trials (supplements, medications, environment changes) and how they affected me and my POIS (over whole POIS days, except if mentioned otherwise) :

March 2019 - November 2019 :

  • SSRI (sertraline) - forced to take it due to severe insomnia and generalized anxiety, 8 months : abstinence during the first months, still POIS following O in the last months but OCD worsening and beginning of a depression at the same time (neuroinflammation ?).


2021 :


July :
  • amoxicillin (antibiotic) : 1g/day, 7 days : no symptoms reduction afterwards, possibly worsening ?
  • cold water immersion, day after O : 80+% symptoms reduction for 1-2h (confirmed), feeling better than at any time.

August :
  • manganese, 3 days + Quercetin, 3 days + Histamine free diet, 7 days + relaxation before O : 60-80% symptoms reduction.

September :
  • successful relaxation before O : 0% symptoms reduction.
  • liver, 7 days + spinach 3 days (to get the right vitamins to support methylation) : 0% symptoms reduction.
  • histamine free diet, 13 days : 0-50% symptoms reduction.

October :
  • low histamine diet, 15 days + gluten free diet, 10 days + lactose free diet, 10 days + probiotic strains to limit histamine release/mast cell activation (shorturl.at/dlzB1), 10 days + vitamin C, 10 days : 0-50% symptoms reduction.
  • no test, 2 and 4 weeks later (but not happening 3 weeks later) : 70% symptoms reduction (due to season change ? less stress ?).

November :
  • methyl B6 (p-5-p), 14 days + vitamin C, 12 days + SAM-e, 12 days + same probiotic strains, 12 days : 50% symptoms reduction (probably same reason as the week before), far less pain during sport.
  • (no discontinuation, switching to the full nanna1's cascade stack) vitamin C, 7 more days + methyl B6, 7 more days + SAM-e, 7 more days + trimethylglycine, 7 days + omega 3, 7 days + vitamin D, 3/7 days + methyl B9, 3/7 days + methyl B12, 3/7 days : 0% POIS symptoms reduction but far less pain during sport + sport dependency. The methyl B9 + methyl B12 supplement was causing NE every 2 or 3 nights. (why ?)
  • Same without vitamin C, 7 more days : 70% POIS symptoms reduction after 14 days (but special conditions : large meal with people, had gastric reflux) and same the next day.

December :
  • niacin, 14 days : 0% symptoms reduction.
  • mucuna pruriens (catecholamines, 66mg, including L-dopa, 50 mg), day after O : 80+% symptoms reduction for 3-5h (confirmed), maybe shortening POIS period - to be confirmed (contact with cold water is still a greater relief globally even out of POIS periods).
     Special note :
     2 POIS periods temporarily relieved by L-dopa end up resolving faster (in 1 day instead of 2) but are directly followed :
     * by urinary infection symptoms for 2 days after the 1st POIS period.
     * by fatigue and a strong headache for a day, which isn't one of my usual symptoms, after the 2nd POIS period.



2022 :
« Last Edit: January 30, 2022, 02:11:12 PM by etcosp »

etcosp

  • Newbie
  • *
  • Posts: 35
Re: Etcosp's case - discussion
« Reply #6 on: January 29, 2022, 06:02:12 PM »
    Others :


    Extended presentation :


    Diverse events :


    Unrelated to my POIS trials :

    2003 :
    • born.
    2006 :
    • took antibiotics for a week due to ?
    • already stuttering.
    2011 :
    • pollakiuria/polyura - the link was made with stress at the time.
    2013 :
    • depression and strong OCD for a year, 1 year after a possible head injury (I had been found awake on the ground in a sport capability and had an anterograde amnesia for 40 minutes) without noticed cognitive impairment.
    • diagnosed with grass allergy.
    • beginning of puberty ?
    2013 - 2017 :
    • desloratadine (2nd gen antihistamine) taken ~2 weeks/year.
    2017 :
    • developed multiple phobias.
    • POIS noticed this year or the year before.
    September 2018 - March 2019 :
    • generalized anxiety, strong OCD, severe insomnies (8h in bed with overthinking almost everyday). Consequence of a commotion in August/an anesthesia at the end of August ? No cognitive impairment.
    March 2019 (PTSD) :
    • forced to stay in hospital for 3 weeks consecutively to that. Forced to take 1st gen neuroleptic cyamemazine for 24 days. Extremely bad reaction ; typically reported side effects and strong confusion (unable to make basic mental calculation).
    March 2019 - November 2019 (PTSD) :
    • forced to take sertraline (SSRI). Typical side effects (including delayed ejaculation) + strong mental and cognitive impairment.
    • 3 times commotions with basic symptoms happening because of attention problems due to the med effects. After that severe OCD (physical, 5-15 times/min) and symptoms of neuroinflammation for a few months (strong lasting impairments).
    December 2019 - March 2021 :
    • severe depression (caused by despair after the cognitive impairments, favorized by sertraline withdrawal ? neuroinflammation ?).
      Probably the variation of blood test results after this period are due to the loss of healthy habits including :
      * going out.
      * exercising.
      * eating specifically during meals (I gained 20 pounds during winter of 2020-2021, which may be linked to a temporary health issue during that period of time).
      * living following a diurn rythm (I sleep from 3-4 to 10-11 AM).
      Note that there's a major family history of depression and anxiety (1st degree diagnosed and treated).


    Related to my POIS trials :

    Mid 2021 - October 2021 :
    • symptoms are strong for 3 days.
    October 2021 - ? :
    • symptoms are strong for 2 days (with a few exceptions).
    ~January 2022 :
    • 2 POIS periods temporarily relieved by L-dopa end up resolving faster (in 1 day instead of 2) but are directly followed :
      * by urinary infection symptoms for 2 days after the 1st POIS period.
      * by fatigue and a strong headache for a day, which isn't one of my usual symptoms, after the 2nd POIS period.
    • I took L-dopa 5 times in 3 weeks. Since I first took it, my sleep rythm got progressively worse. Now I can't fall asleep before 7 AM. Added to that, I feel very awake and excited at any time of the day (out of the first hour after waking up) despite lacking sleep.


    Hypothesis :

    1/ Immune system hypothesis :
    For some reason an immune system global reaction is triggered after O/E. That's why I have symptoms of inflammation (including swelling). That could be due to a latent pathogen reactivation. My organism having constantly to deal with an immune reaction (which could explain OCD and recurring psoriasis), with one gene specifically that is associated with 2x the normal TNF-a levels, has a neurotransmitters depletion. This neurotransmitter depletion is maybe for something in the too strongly perceived immune reaction.
    Else, since ways of stimulation of the vagus nerve (cold water immersion, relaxation maybe ?) and supplementation with its mediator of immunity (dopamine) help a lot, I suspect it's implicated. I have yet to test the way any other stimulation of it affects my symptoms (already had good results with gargling, to be confirmed).[/list]
    « Last Edit: January 30, 2022, 09:57:56 PM by etcosp »

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #7 on: January 29, 2022, 06:03:23 PM »
    For convenience, I will reserve the next messages and leave space for discussion in page 2.

    Don't hesitate to suggest edits and of course discuss my case. I answer all messages, sometimes after a few days, but my answers can be very unclear at first (most of the time due to POIS symptoms or similar symptoms, that happen very often).
    « Last Edit: January 30, 2022, 07:32:18 PM by etcosp »

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #8 on: January 29, 2022, 06:09:56 PM »
    Reserved 8

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #9 on: January 29, 2022, 06:10:38 PM »
    Reserved 9

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #10 on: January 29, 2022, 06:11:12 PM »
    Reserved 10

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #11 on: January 29, 2022, 06:14:48 PM »
    Reserved 11

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #12 on: January 29, 2022, 06:15:48 PM »
    Reserved 12

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #13 on: January 29, 2022, 06:16:33 PM »
    Reserved 13

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #14 on: January 29, 2022, 06:18:28 PM »
    Reserved 14

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #15 on: January 29, 2022, 06:19:09 PM »
    Reserved 15

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #16 on: January 29, 2022, 06:20:06 PM »
    Reserved 16

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #17 on: January 29, 2022, 06:20:40 PM »
    Reserved 17

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #18 on: January 29, 2022, 06:21:17 PM »
    Reserved 18

    etcosp

    • Newbie
    • *
    • Posts: 35
    Re: Etcosp's case - discussion
    « Reply #19 on: January 29, 2022, 06:21:57 PM »
    Reserved 19