Post Orgasmic Illness Syndrome (P.O.I.S.)
POIS Cause/Treatment Discussions => General Alternative Causes and Treatments of POIS => Topic started by: OpiesDad on March 16, 2021, 10:14:22 PM
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Background: I've had secondary POIS for 2.5 years. Symptoms are cognitive (memory, agitation), emotional, physiological (fatigue, joint/muscle aches, digestional, pressure headache, full body inflammation, racing heart, jumpiness, headache, temperature modulation issues -- freezing feet etc). Originally symptom onset was 1.5 days post O and peaking at 4 days. More recently boundaries are fuzzier, the symptoms are less pronounced but last for weeks and recur even long after O.
Past Treatment: So I've had some success on a regimen of Propranolol, sudafed (increases norepinephrine levels), hydroxyzine (H1 blocker that crosses blood brain barrier) and Pepcid (H2 blocker), and adderrall. I also had to go gluten free. This course has made life tolerable though I have bad brain fog and still feel generally impaired. I have been convinced that POIS is primarily a mast cell reaction.
New Treatment: My psychiatrist thought it would be worth trying Wellbutrin. Main effect is a dopamine and norepinephrine reuptake inhibitors. Idea was I could sub out adderrall and perhaps the sudafed.
Results: Starting with 150 mg dosage. I am 3 days in. I have O'd twice and so far essentially no symptoms, besides perhaps a slight skin reaction that suggests I still may need the antihistamine. I am still taking Propranolol. Generally, I have somewhat higher alertness levels and less fatigue. I am aware that this could be placebo or a honeymoon period so remaining CAUTIOUSLY optimistic.
I am out of my depth here, but it suggests to me that POIS may for some reflect a norepinephrine deficiency. I gather that after orgasm norepinephrine levels increase but then drop before returning to a baseline. People with norepinephrine deficiency have poor memory, low mood, fatigue etc. Makes you wonder whether POIS sufferers have a norepinephrine dump that takes longer to refill or remains low/empty.
I am also not ready to give up on the mast cell theory either and would not be surprised to find additional links.
In any event, for me this is an exciting development and I will keep you all posted.
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Hi OD, I hope this relief will last. Please keep us informed of your results in the coming months.
2 O's in 3 days? you sure put your treatment to the test. Some treatments may be partially efficient, and if O frequency exceeds their capacity to overcome POIS symptoms, you may miss the fact that they would have been of great help to you. As I see it, we can find a way to control our symptoms, but there is no way yet to cure POIS, so moderation vs O frequency is always a good idea. However, of course, you are the one who is the best placed to decide what is the best frequency for you,
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Great job !
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I tried this before and it turned me into an alien literally... I felt awful and could barely even speak when I was with friends or family, it was by far the worst antidepressant I've tried the others didn't do anything like this. I'm guessing it's to do with some problems related to dopamine.
Just shows everyone's body is different, I'm glad it's working for you so far.
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OpiesDad, do you experience any of the following symptoms of Small Intestinal Bacterial Overgrowth (SIBO):
Bloating
Abdominal pain
Nausea
Food intollerance
Difficult to digest fat
IBS/Chrons
Acid reflux
Constipation/diarrea
Yelloish poop
Coated tounge
Gas
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Quantum: I got carried away with testing. Agree that moderation will be key, certainly won't find myself back in my old regimen of 4-5 Os a week. :)
BoneBroth: Not really. Yes to Acid Reflux and yes to occasional bloating.
Iwillbeatthis: Yes. I've also read that people have a few great weeks with it before a sort of crash. Will be on the lookout.
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Update: Now using 300 mg wellbutrin daily, sudafed and propranolol (have taken hydroxyzine a few times when I felt rashy).
Okay guys, I am two weeks plus in to using wellbutrin. I've O'd 4 or 5 times since and have had no cognitive symptoms. None. No buzzy head, no memory impairment, motivation is back, ability to concentrate and articulate is back. I have easily had the best two weeks cognitively that I've had since this nightmare started 2.5 years ago. Physically also very solid though I would say my legs still feel weirdly heavy when I jog in the days after O, but generally body is good too, including gut which goes haywire in POIS.
Restating the theory --- POIS could be a norepinephrine deficiency, which somehow sometimes cascades into a mast cell reaction. Wellbutrin is a Norepinephrine reuptake inhibitor (and dopamine reuptake inhibitor as well). No impact on Serotonin. So by taking it, your norepinephrine and dopamine levels should rise. Norepinephrine deficiencies are associated with many of the cognitive impairments we suffer (memory loss, lack of attention, headache, fatigue, low mood). It can rise and fall during stress events generally but during orgasm, norepinephrine spikes then drops before returning to a baseline. On my theory, POIS sufferers don't refill after a drop and that gives rise to many of the symptoms. Antidepressants also get prescribed commonly for fibromyalgia and other flare up arthritic conditions.
Every case is unique, so I have no idea if this treatment would work for you all. But if you are okay with the idea of taking an anti depressant, if I were you I would 100% for certain talk to your doctor about giving this a trial run. In my case I started feeling different in a good way the day after I took my first dose. Maybe even the day of.
This is not placebo affect it's freaking real, I just hope it lasts.
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Do you mean that if norepinephrine/dopamine is not beeing uptaked by the CNS (inhibited reuptaked) the levels in the blood will rise and thats where you want it to be?
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yes but in the brain, not blood. In fact I still take propranolol so that epinephrine doesn't hit the heart (which seems to cause those weird POIS heart palpitations, sweating and the panic feeling). Mind you, I have no training and no aptitude for science, biology, neurology or medicine so all of this is based on a very rudimentary understanding. I just know that I feel much better these last two weeks than i have in 2.5 years and this is the only thing that has changed.
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Opies, you mentioned you were only 3 days in to taking Wellbutrin but you had O'd twice with no symptoms. To me that suggests you may be able to use the drug as a prepack, only before O, or at least taking it in the 1-2 days before you O each week, instead of taking it every single day. It seems to have worked immediately for you, which is great news. You also mentioned some members have had a crash after a few weeks of using it, which you may be able to avoid by using it only as needed rather than daily. There may be some tolerance building up, or some reason others experience that change after a few weeks, that you may be able to avoid by not taking it so frequently.
Just a thought. Not sure how that drug works or if you are able to take it in that intermittent kind of way.
All the best, and keep us posted. I may give it a try too this week since you had such fast results.
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Yeah I don't know. The psychiatrist explained that as an anti-depressant it usually takes 4 weeks before folks start reporting results, but that is not borne out by what folks on Reddit anecdotally report who all seemed to feel a change earlier. Perhaps it could be a pre-pack, but honestly my POIS was expanding beyond normal borders into something more chronic, trigered by something other than arousal/O, and the Wellbutrin has so far turned the ship around. It is by the way also used off label for treatment of adhd and I have certainly had better motivation and ability to focus/do work in the 2.5 weeks.
Should mention that in the 2020 case study reporting an effective treatment of a single patient using TRT, the report mentions in the history that the patient had not had good results with Wellbutrin among other therapies, so it won't work for everyone I guess.
I will keep you all posted, had another O yesterday and today I feel cognitively and emotionally 100%, and body-wise 95% (slight runny nose, eyes feel a touch inflamed, legs a little heavy, stomach noises).
Please let us know if you give it a shot and results.
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Fantastic. Great to hear it still works for you and helps in other areas. I had also read it takes up to 4 weeks to kick in, which is why I thought perhaps some other interaction with the drug is at play in POIS.
When the full effects do kick in in that 4 week period you may begin to feel those effects more strongly, so time will tell. Hopefully things remain the same for you.
Milnacipran had the same effect with Hurray, which normally takes time to kick in but he uses it only as a prepack before O and it works well for him so far.
I will definitely ask a doctor to test this drug next time.
Question:
A.) How many days had you taken it before you tested the O? E.g. you took a pill on Monday night, took another pill on Tuesday night, took another pill on Weds night, and O'd on that Weds night?
B.) On the day you had your first O with the Wellbutrin, approximately how many hours before did you take the pill?
C.) Did you take it with food the first night of the O, or on an empty stomach?
Pardon the detailed questions - I want to try and do exactly what you did. 🙂
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Update: Wellbutrin is still working! I have had no bad days and it's been just over a month. So I had a crazy work fire drill the last 6 days (finished today just a few hours ago). I worked 17 hour days (no joke and no exaggeration), doing a mentally demanding, high pressure, speaking intensive role, and at no point did I feel any of the POIS related symptoms creep in (which they used to during lack of sleep even when I was distant from an O). No cognitive, emotional or physical deficits at all. 2 months ago, I guarantee I could not have accomplished this last week (though pre-POIS I definitely could). To me it feels like a miracle. I've jerked off probably 7 times since starting and have not had a reaction I am easing off the sudafed and propranolol. I do have some very light mast cell stuff, like after a shower my chest is extremely red, but it's nothing. I just hope this lasts.
Laotzu:
A) 3 days in I jerked off twice. No symptoms.
B) Wellbutrin is a daily medication. Probably like 10 to 15 hours post pill.
C) Morning before any food. Don;t think food impacts absorption.
Let me know if you have any other questions.
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Wow. That's great news. You are extremely lucky, and let's hope it continues. Thank you for the reply, I was actually waiting to hear your results before seeing a doctor, but glad you waited to give it a proper test before reporting back. I am in a POIS episode now and it's hell. I wonder how severe your symptoms were pre-Wellbutrin. I cannot even function as a normal social being in this state. No way I could go to work in POIS, not even in a low-pressure position.
Thanks again, and wishing you continued success with it. 🙂
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https://poiscenter.com/forums/index.php?topic=3551.msg40325#msg40325
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Bupropion is 100% dopamine reuptake and only 27% norepinephrine reuptake.
A simple way to test for noradrenaline deficiency is to try yohimbe or possibly yohimbine, I ordered some a few weeks ago from iherb but my order got cancelled for abusing their sign up offer lol. As well as raising norepinephrine it increases blood flow to the sexual organs.
I had low VMA and a high HVA/VMA ratio which indicated low norepinephrine and low conversion of dopamine to norepinephrine.
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ehhh. I had a bad day today -- sorry for the whipsaw and let down.
I O'd last night (first in like 10 days), and had symptoms as soon as I opened my eyes. I took Wellbutrin first thing only (no propranolol). Extreme morning fatigue, head pressure, fogginess, desert dry mouth. After a few hours still felt pretty shitty, so I added propranolol, sudafed and antihistamine and after an hour or two symptoms receded. I was able to work and be effective enough, so though the morning was intense, I was functional. But I can tell you, I was a different person w anxiety, emotional turbulence, absolutely no working memory ... back to my POIS self which I hate. If the tasks I was doing all week were on my plate today, I would have freaked the F out, whereas all week I never once doubted my competence was just as on point as I can possibly be. It's an incredible (and sad) transformation between yesterday and today.
Here's the kicker, so I've been very blocked up (constipated) for a few days because during this intense 17 hr a day week, my eating was irregular and shit. So late this afternoon I had the not so great idea of drinking some coffee. I quit coffee 18 months ago after being a 6 cup/day guy for 20 years. After POIS kicked in 3 years ago I eventually realized that caffeine while in POIS was an absolute killer for me causing wooziness and intense discomfort. Anyways, I drank the coffee and sure enough the head feeling kicked in and I was as sick as I used to be 2 years ago. As I write this the symptoms are lifting but my legs and feet have the usual hot-cold sensations.
In any event, I have re-confirmation that caffeine is off limits; Wellbutrin may help but it ain't the silver bullet, or a Quantum wisely pointed out a month ago, something may work, but dont push it. Well I pushed it. Will keep you all posted.
[edit: just realized that I took Xyzal not my hydroxyzine antihistamine which was dumb since the latter has helped in the past and crosses the blood brain barrier. Oh well.]
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You're not supposed to drink caffeine while on Bupropion btw
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I was not aware re caffeine and wellbutrin. Luckily coffee is not my thing any longer. Feel considerably better this morning. Added Hydroxyzine last night and feel considerably better today. I can live with one day POIS bouts.
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Bupropion is 100% dopamine reuptake and only 27% norepinephrine reuptake.
A simple way to test for noradrenaline deficiency is to try yohimbe or possibly yohimbine, I ordered some a few weeks ago from iherb but my order got cancelled for abusing their sign up offer lol. As well as raising norepinephrine it increases blood flow to the sexual organs.
I had low VMA and a high HVA/VMA ratio which indicated low norepinephrine and low conversion of dopamine to norepinephrine.
So would Yohimbe yelp if it were a norepinephrine issue? I've definitely noticed that intense mental activity causes me similar symptoms as an O, just less severe. Less mentally engaged activity doesn't cause that. And POIS caused by an O has a ton of gut involvement, where mentally triggered doesn't do that as much for me.
Curious the involvement of norepinephrine vs dopamine and potential treatments.
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Yes it would yohimbe is like pure norepinephrine/epinephrine.
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But does that help or potentially harm - and would it be a daily stack or a pre-pack?
I feel much better after O, during intense mental activity, etc. It's the aftermath - the next few days - that the negative effects become apparent. So I've wondered if things that just raise dopamine or norepinephrine would be helpful or harmful, or if there are other potential treatment protocols.
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Sorry to hear that OpiesDad. At least your symptoms didn't seem to last very long. The Wellbutrin would be in full effect now, and I wonder if that actually makes a difference.
If the efficacy wears off, given that after only 3 days of taking it you were able to O without any symptoms, if you do decide to go off this medication with your doctor, you may again wish to try it shortly after as a prepack and see if it is effective in that way.
All the best there, and hope you are feeling better.
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Hi Muon,
Regarding your post on Bupropion :
Opiesdad improves on: Bupropion (https://poiscenter.com/forums/index.php?topic=3755.0) and propranolol. Feels worse on SSRI's and LDN.
(...)
You may want to read this exchange on reddit (user TheLooza is Opiesdad), for other hypotheses :
https://www.reddit.com/r/POIS/comments/mkeh4n/wellbutrin_appears_to_have_cured_my_worst_symptoms/gtjjz8z/?context=3 (https://www.reddit.com/r/POIS/comments/mkeh4n/wellbutrin_appears_to_have_cured_my_worst_symptoms/gtjjz8z/?context=3)
and https://www.reddit.com/r/POIS/comments/mrp51k/noepiephrine_deficiency_and_noepiephrine_reuptake/guwbi6p/?context=3 (https://www.reddit.com/r/POIS/comments/mrp51k/noepiephrine_deficiency_and_noepiephrine_reuptake/guwbi6p/?context=3)
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Wellbutrin 300 mg + Propranolol 60 mg + Hydroxyzine 25 mg regimen still working guys. I have been jerking off fairly regularly again (once a week). I do still get a painful fatigue that lasts a few hours, but it resolves fairly quickly and from there I am close to 100% save for some acid reflux (take pepcid 20 mg as well). The norepinephrine theory may still be in play, especially because the post O crash could reflect the low level of norep, but it more quickly refills returning me to a more balanced state + the other medications handle the other physiological symptoms.
I mean, for the most part I feel normal again and I'm really excited about it!!!
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Wow. That's great news. You are extremely lucky, and let's hope it continues. Thank you for the reply, I was actually waiting to hear your results before seeing a doctor, but glad you waited to give it a proper test before reporting back. I am in a POIS episode now and it's hell. I wonder how severe your symptoms were pre-Wellbutrin. I cannot even function as a normal social being in this state. No way I could go to work in POIS, not even in a low-pressure position.
Thanks again, and wishing you continued success with it.
My symptoms for the first year were out of control. A 9 out of 10. I got medical leave approved from work (though only took a few days off sporadically). I could not function really at all for days at a time. Intense head pressure and dizziness, a chemical sort of depression and anxiety, aches all over my body, red inflamed eye, very intense acid reflux, rashes in different spots, dry mouth like you wouldn't believe, weird sweating but chills/freezing appendages, testicular pain and heaviness, a brain fog that made me fearful that I had brain damage, difficulty speaking, lump in my throat, no working memory whatsoever, couldn't even follow conversations, couldn't understand words on paper....IT WAS BAD.
Before POIS, I would have said I was an extremely healthy person, and POIS basically broke me.
When I cut out gluten and caffeine, started taking the propranolol and pepcid + antihistamine things did start to improve overall. The adderrall helped a little, but too much actually made me foggy. In any event, in the second year, my POIS became way more tolerable. More like a 6 out of 10, but still had most of the symptoms and I also started to get them at weird times despite abstaining from Orgasms for weeks at a time. Bowel movements seemed to cause flare ups, as did certain thoughts or stresses. Being in a heated room or hot spot with non-moving air definitely triggered symptoms as well. It's why I became so convinced that POIS was a mast cell condition.
I also tried an incredible array of supplements, prepacks and SSRIs but none of those helped me at all.
And then the Wellbutrin in March was introduced and things got really good. As I said, I still seem to get a sharp fatigue that last two or three hours and a desert dry mouth. On my POIS scale we are talking 1 or 2 out of 10.
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Eh. I've had a couple setbacks with wellbutrin. Including a very very bad day on Friday when I only got 4 hrs of sleep and woke up very "fast" the next morning (jumped out of bed and ran upstairs for something). Don;t know what to sy. things have gotten better overall, but I definitely got sick, and O'd last night and today had the Zero energy affect where I could barely move.
Feeling much better now, so maybe symptoms are resolving faster, but still.
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I wonder if Milnacipran can be a safer alternative to Wellbutrin.
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https://scholar.google.nl/scholar?hl=nl&as_sdt=0%2C5&q=bupropion+anti-inflammatory&btnG=
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How's the Wellbutrin working at the moment? Do you still feel it has turned the ship around for you?
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POIS for me is 100% not a norepinephrine deficiency. I think sick people in general come up with ideas or are worse told by doctors things that are untrue because they never get tested for it. To test Norepinephrine it is a blood test, resting and standing for 10 min. It is sent to a special lab frozen. It?s called a Catecholamine test, google it. It tests Norepinephrine, Dopamine, Epinephrine and serotonin, ect?
My Norepinephrine is actually very high?
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I think it's hard to say 100% anything. Serum catecholamine levels (or urine) test just that - levels in serum or urine. This is not necessarily correlated with brain levels. If they were, then SSRI and SNRI rx would be based on testing, rather than on psychiatrist experience. Unfortunately as far as I know, the only reliable way to test neurotransmitter levels in the brain is by sacrificing the subject. Hence all our reliable info is from animal experiments.
Someone can correct me if I'm wrong, but that's my understanding and why I haven't really pursued expensive urine transmitter tests. That shows what you urinating out, but not what is necessarily affecting your brain function.
Plenty of people here have been tested for a million different things. We still don't understand POIS, so we don't really know what we're looking for.
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OpiesDad, how are you managing?
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Curious how you're doing OpiesDad. Also interesting to me because intense acid reflux is a symptom for me (also from any activities that trigger CFS-type flares). But I don't hear people mention acid reflux that often.
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…I don't hear people mention acid reflux that often.
Excessive caffeine gives me acid reflux. Painful at times.
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I would actually say that the acid reflux is a major symptom of mine that I control primarily with a 3x dose of Pepcid AC (30 mg), and sporadic use of prilosec.
To close the thread on this, the wellbutrin had an initially positi ve but ultimately temporary impact on well being. While it had promise at first, it did not do much to help with POIS symptoms.
Instead as I note in other threads I have had very significant success with higher dosages of propranolol (60-120 mg daily) and allegra along with occassional alleve, pepcid and sudafed after O or when feeling symptoms. I have also made several significant lifestyle modifications including going gluten free, alcohol and caffeine free, earlier to bed that I view as critical to POIS management.
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I would actually say that the acid reflux is a major symptom of mine that I control primarily with a 3x dose of Pepcid AC (30 mg), and sporadic use of prilosec.
To close the thread on this, the wellbutrin had an initially positi ve but ultimately temporary impact on well being. While it had promise at first, it did not do much to help with POIS symptoms.
Instead as I note in other threads I have had very significant success with higher dosages of propranolol (60-120 mg daily) and allegra along with occassional alleve, pepcid and sudafed after O or when feeling symptoms. I have also made several significant lifestyle modifications including going gluten free, alcohol and caffeine free, earlier to bed that I view as critical to POIS management.
do you mean that wellbutrin does not work?