[mellivora]

Caution: Depressing Post

I'm losing it. For some reason my POIS is getting worse. The worsening may be due to a number of things. Most likely Effexor and betaine hcl, but could perhaps be due to my two months use of Klonopin for anxiety. Either way I've waited weeks and the pain in my knees has not gone away. I estimate than in a few years time I will no longer be able to stand on my feet or walk because of POIS. My next step is to see if I can get my testicles surgically removed. I've read it can be done for $3,000 to $4,000 but I'm not sure if my mom has that much money. I need to talk to her about it. If that isn't possible I may resort to self castration. Even if I mess up the surgery and bleed to death or get an infection and die a slow death of gangrene it will still be better than slowly rotting away in this room that has become my world. The treatments I've mentioned previously still work to dull the pain of POIS, but the POIS has become too much even for those treatments to work. My face and eyes are too irritated to even read and participate on this forum much of the time now so this may be my last post here. Thanks to all of you for all the great work you've done together to fight this monster that is POIS.

Vincent Marcus,
Your situation sounds terrible. Please hang in there buddy. You've made some great posts on this forum and are a really valued forum member.  I mean that.

Try not to look too far into the future. It hasn't happened yet. None of us knows what the future holds for us. I had a recent health scare and it was easy to see it as the end of the line for me before a diagnosis was even made. I can understand things are feeling desperate for you right now but try hard not to make assumptions about the future.

By all means look into castration like Animus did but you are worth taking care over. Don't resort to doing it yourself, if you're going to do it, get it done professionally. Do talk to your mom. I know what its like for a room to become your world - I'm sure a lot of sufferers can relate to this although admittedly I haven't had quite the same symptoms of knee pain that you are experiencing now.

When was the last time you saw a doctor? I know they don't understand POIS but perhaps you should present your symptoms as they currently are. Its a long time to have knee pain and perhaps they might be able to pinpoint a physical reason for it this time. I presume you have tried the usual anti-inflammatories and painkillers a long time ago.

Seriously dude, we care about you. Keep talking to us.

[acronym]

Hi,

Today I got my report of CT SCAN of BRAIN.  I undergone for CT SCAN of Brain test in 2nd day of POIS and as per the report everything is normal.  Further, I also got blood test and Nutrition level test which is also a normal. But POIS is still exist.  Now my doctor advising me to go to a psychologist and he is telling that it is a psychological problem rather than physical. 

A CT scan I assume would only reveal physical aberrations, and they would need to be of a reasonable magnitutude to stick out. I would be surprised if we all had obvious physical brain deformity. I think our problems are more micro level. Most people with epilepsy have normal CAT scans for instance. I believe functional brain imaging (SPECT/PET scans) would be more beneficial in our case. I had a PET scan done the day after an O and it showed obvious blood flow/brain glucose metabolism irregularities. (note I have also been diagnosed with CFS and many CFS patients show abnormal results on brain blood flow scans).

I SPEC scan just after an O + a baseline (2 wks since an O for instance) would assist us in proving this condition is definitely not psychosomatic, and maybe what regions of the brain are effected but I doubt it would likely reveal the cause of the condition.

[Vincent M]

I was thinking castration might be a possible way to minimize symptoms for me. Maybe try the chemical route first, anti-androgens.

[Vincent M]

Another thing I could try is testosterone, but I'm pretty sure my testosterone levels are high since I am constantly desiring sex and masturbate multiple times every day. Maybe that should be my next step. Then there's silodosin, but that's kind of a shot in the dark especially with my ejac frequency.

[Vincent M]

I think it would be beneficial to me if I could lower my libido. Even if it doesn't help my POIS directly it will allow me some relief from the constant psychosis of this spiral of self destruction. Being addicted to the thing that is killing you and the addictive substance being as easily obtainable as just a few sexual thoughts or a slight unintended touch to the genitals. The stress of always having to resist is maddening.

[Vincent M]

Does anyone know where I could get hookworms for helminthic therapy to treat POIS? I live in USA.

[mellivora]

Hi Vincent Marcus
Sorry about your mom's reaction. Have you showed her the forum, the reddit post or Dr Waldinger's papers. Maybe that would help convince her if she really doesn't believe POIS is real. You have people here who KNOW its real.

As far as I'm aware helminthic therapy hasn't been tried by any POIS sufferers. I need to read more about it (though did read an article in new scientist a while back). My impression is that this is one of those "latest things" that people are jumping on the bandwagon for without really understanding and I don't think its a good way to go for us, especially as we don't really know the underlying cause of POIS. I'm also wary of trying medications because of side effects, not least because my POIS started after I had radio-active iodine treatment for an overactive thyroid  - that may or may not be coincidence but I don't experiment with treatments without careful consideration now.

Perhaps seeing a different psychologist could be beneficial to you in terms of helping you cope with your situation. If you are feeling suicidal, perhaps call the Samaritans. All I can say is that when you feel you're in the deepest, darkest hole you've ever been in and are feeling helpless and out of all out of hope, its totally possible that something will change and help you out at some point. Although I've never contemplated suicide, in the early years of my POIS I went through some very dark times, the darkest of my life, and it definitely gave me an understanding as to how some people with POIS would feel suicidal. When things improved a bit for me I looked back and was amazed that I made it through that period the way I did. I know from your words that things are desperately hard just now.

Accept that things are really difficult for you right now. Its not what you want but its what's happening right now. Please believe that if you hang in things can improve and you'll be really glad you pulled through. Your efforts to help yourself and others on this forum speak volumes about the type of guy you are. We want you here!

[mellivora]

The way I see it is if achieve castration I will at the very least reduce my freakish sex drive so even if it doesn't help my POIS it will allow me some relief from the constant psychosis of this spiral of self destruction. Being addicted to the thing that is killing you and the addictive substance being as easily obtainable as just a few sexual thoughts or a slight unintended touch to the genitals. The stress of always having to resist is maddening. It's like being allergic to the very air I breathe.

No harm in getting your testosterone tested although it does sound as you say like yours is not low. Maybe you'll find it useful to PM Animus about castration. He probably knows more about it than any of us. I know he still monitors his PM's from time to time as I PM'd him when we were doing the reddit campaign.

[mellivora]

As far as I'm aware helminthic therapy hasn't been tried by any POIS sufferers. I need to read more about it (though did read an article in new scientist a while back). My impression is that this is one of those "latest things" that people are jumping on the bandwagon for without really understanding and I don't think its a good way to go for us, especially as we don't really know the underlying cause of POIS.

I may have made too hasty a statement here. It seems there are universities seriously looking at this for autoimmune conditions. Its early days though...

[Vincent M]

Thanks for your kind words, Mellivora. I've been reading up on helminthic therapy and like you just said there seems to be a lot of logic and science to back it up so there's a good chance I'll try it if I can obtain some hookworms. I have a lot of thinking to do. I will try to check in on the forum still, but it probably won't be as often since I'll most likely now be forced to drown my pain in various electronic entertainment.

[martin88]

Thanks to the 2 POIS sufferers and doctors who participated in the show.
Good points Mellivora. I wrote that before reading your post:
About the "POIS psychological" debate, I don't understand all of Dr Goldmeier's interview (because of my english) but at 2.45' in the video he's asked if POIS is psychological, his answer is "we don't know". That's all I need to know!
I think POIS is physiologically causing anxiety by affecting the brain or something else. It's not only the situation, that's how I feel it.

At the beginning he's saying there's 40 POIS cases (not sure if he added "officially"), I think we're around 400 cases reported in the forum. Is he informed of that?(for the next interview). Personally I think there are more POIS sufferers. At the beginning of my POIS for at least 6 years I was very tired without knowing why, and it was because I never went into sexual abstinence to feel the big difference. If you asked me if I was tired after orgasm I would have said no!

[daveman]

Hi,

Today I got my report of CT SCAN of BRAIN.  I undergone for CT SCAN of Brain test in 2nd day of POIS and as per the report everything is normal.  Further, I also got blood test and Nutrition level test which is also a normal. But POIS is still exist.  Now my doctor advising me to go to a psychologist and he is telling that it is a psychological problem rather than physical. 

Further, in our country, Niacin tablets is not available.  I find B.complex tablet which is of following composition.
Each Capsule contain:
Vitamin B1 10mg
Vitamin B2 10mg
Vitamin B6 3mg
Nicotinamide 50mg
Folic acid 1000mcg
calcium pantothenate 20mg
L-lysine mono hydrochloride 150 mg
Vitamin B12 5 mcg.

Whether this tablet is appropriate and does it contain Flushing effect? Please help...

I'm not really sure about doses, but a  bottle that I saw here had much more than your formula. Something like 200mg each of B6 and b12. So if someone could give us an idea of the B-Complex doses that work. I think the SMF forum had a recent post about a successful application of B-Complex.

Niacinimide can also help, but you need about 1000 mg, and also taken before the "O". Perhaps Guthrie can repost his experience, dosage and application of niacinimide. (which is sometimes available when niacin is not)

Niacin is tough to get in Chile too, but I have found B1 B3 Vit C combinations, which should work. $14 for 20 pills!!



Yeah, we can´t expect much from "regular doctors". Even among experts the diagnosis is often doubtful. We REALLY need research.

[jferr]

Hey guys. Hope you are all doing well in your endeavors.

Niacin has helped me a great de over the past few months. And with the additions or spirinula, vitamin c, vma and a few minerals I have been able to grt back to work. My POIs is constant and worst within the first few days, but eith these supplements I have been able to work even the day after orgasm. I need about 400 mg niacin to feel a flush without food, I take about 1000 mg of spirulina and 1000 mg of chlorella, and 1000 of vitamin c right after orgasm and the next day.I have been capable of working and working hard for the past few months. Recently, though, I feel as though the symptoms are coming back. The supplements seem to have become less and less effective over time even though I am hardly having an orgasm once a week. The fatigue, confusion, and hot flashes are coming back and I'm not sure what to do. I don't know hownpossible it is to have built a tolerance to these medications. Really having a difficult time. I would be willing to hear any suggestions you guys may have.

Thanks,

Jon.

[jferr]

P.S. I am not just looking to use te forum for free advice as I recently pledge to commit $1,000 dollars when I have the money. I will honor that commitment. I know everyone in this forum is struggling. We will not give up.

[daveman]

Caution: Depressing Post

I'm losing it. For some reason my POIS is getting worse. The worsening may be due to a number of things. Most likely Effexor and betaine hcl, but could perhaps be due to my two months use of Klonopin for anxiety. Either way I've waited weeks and the pain in my knees has not gone away. I estimate than in a few years time I will no longer be able to stand on my feet or walk because of POIS. My next step is to see if I can get my testicles surgically removed. I've read it can be done for $3,000 to $4,000 but I'm not sure if my mom has that much money. I need to talk to her about it. If that isn't possible I may resort to self castration. Even if I mess up the surgery and bleed to death or get an infection and die a slow death of gangrene it will still be better than slowly rotting away in this room that has become my world. The treatments I've mentioned previously still work to dull the pain of POIS, but the POIS has become too much even for those treatments to work. My face and eyes are too irritated to even read and participate on this forum much of the time now so this may be my last post here. Thanks to all of you for all the great work you've done together to fight this monster that is POIS.

This sounds very familiar to me, although the situation and individual problems are distinct.

POIS has a way of cycling, sometimes worse, sometimes better. You have always been a strong one here, finding solutions and helping others. But you are in a down cycle. And they seem like hell!

Try, if only for a few days to reduce your "orgasms" by 1/2. The worst of the cycle will pass and you will get your right mind back again. We need that every once in a while to remind ourselves that we are not nuts, and we just have POIS.

My guess too is that the anti-depressants could be making things worse for you, but as we know, it's not just a matter of stopping them cold turkey.

Get yourself out of this down cycle. Easier said than done, but I'm not saying it as someone who's never had to do it. I understand completely where you are at. But you need your real mind back.

Once you get a hold of some sanity, work your way out of the anti-depressants carefully. Maybe even try to get back to a clear space. Youare our experimenter, always working your way, with machette in hand through the possible cures, finding good ones and bad ones for us.

But maybe you need to get back to square one. Let your mind and body heal, perhaps a POIS without anti-depressants or saw-palmento or even garlic is better than what you are going through.

Find a neutral Vincent-Marcus. I did that once. stopped taking everything, got back to a neutral ground, and found that the POIS was almost cleaner than what I was doing to myself with all the supposed remedies.

At least you find a point from which to start again.

All this probably doesn't help. Just hope you make it through the "bump".

Hang in there.

[Guthrie]

Firstly, neither Dr Goldmeier or Dr Kocsis say that POIS is actually psychosomatic although this is one theory they are investigating or "exploring" as Dr Kocsis puts it. Dr Kocsis is a psychologist so it is natural for her to consider POIS from a psychological perspective. Dr Goldmeier has openly admitted to me and in the ABC interview that he doesn't know what POIS is.  He clearly is looking at the psychology of it with Dr Kocsis but has also consulted with immunologist colleagues about POIS and prescribed me both diclofenac to test (anti-inflammatory) and levocitirizine (antihistamine). Joe Burger on the poiscenter forum found that levocitirizine (also prescribed to him by Dr G.) helped him. I have some but am yet to test it as I want to wait for a non-POIS health issue that I currently have to clear up first. My impression from discussions with Dr G. is that he is not dismissive of Dr Waldinger's theories but equally has a few reservations about them owing to the lack of controls in his studies (something Dr W has acknowledged himself).

It is normal in science to have more than one hypothesis about something and to test the hypotheses until the correct one or a better one is found. As long as it is done from a scientifically rigorous perspective, I don't think we should be angry, especially at this early stage, if someone wants to examine POIS from a psychological perspective. Its something that hasn't been done in a scientific way before and in fact this could end up helping to permanently eliminate a psychological explanation if the medical literature ends up concluding that this is not psychological. Of course Dr Waldinger has already gone some way to publishing that POIS  is not psychosomatic and if his future studies are more widely accepted as being carried out in a rigorous way (eg. with better controls) then this could do the job for us. What IS potentially damaging is if people see interviews by Dr Goldmeier and Dr Kocsis and interpret them as concrete factual explanations rather than theoretical ones. That is where the danger lies for us. In that regard it is also not that helpful to us that after Dr Waldinger's 2011 papers the media appeared to report that the cause of POIS had definitely been found. I was conscious of this during our reddit campaign. I was afraid people might read the news reports on the internet and conclude that actually the solution to POIS has been found. As we know, that isn't definitely the case.

Mellirova, this is a very thoughtful post, and what you're saying makes sense. 

And, we should certainly open to looking into all possibilities -- it's just difficult to hear statements that can come across as 'fact', rather than 'possibility', especially when we're already having to overcome the general prejudice of "Oh, it MUST be psychological".   I.e. since many people hearing about it would already be inclined to view it as psychological, it can be more misleading even to be seeming to put that view forth in an interview.   In contrast, if in an interview someone gives an impression that it is physiological, not psychological, then this would go against, rather than confirming, people's prejudice.  In this latter case, they might then ask for more data -- which is fine and proper.  But, if they hear an interview that gives the impression that it is psychological, they'd just say 'yes, that makes sense', rather than seeking data to confirm or disprove *that* view.  That is, it is not a symmetrical situation that we're facing in seeking to overcome prejudices!

[daveman]

Yes, Mellivora, it's killing us not knowing what POIS really is.

All I know, is when you're clear you know what it isn't.

In my case, doesn't matter if it's niacin or whatever, when you are "back" in a healthy state, you can see clearly what it's not.

I've gone through my stages of POIS induced depression. They're short, 2 or 3 days, but they are hell. You are sure that you are going crazy, or even if it's just brain fog, you imagine what-ever cause. Anything but what it really is.

When you are clear you KNOW that the temporary depression was caused by some physical/chemical unbalance. You see what POIS was doing to you, where it was hurting you, where it was inflamed, and you see how you, the human machine and human mind, are NOT that. You see that the poison is gone.

The second time I took niacin, I didn't believe it could work two times in a row. I should have had more stress or psychosomatic upset. As a matter of fact I was quite worried that it wouldn't work. I was convinced that it wouldn't work again.

But it did, just like the first time and every time thereafter.

I've even had times where I felt I didn't take enough because the flush was weak. I should have had a terrible session if it were psychosomatic. But I don't. It keeps on working.

That's me and a few others. But because of niacin and a drive to find some common ground between that and other things that have worked like testosterone (for some) I feel that a common ground is emerging, even if it IS only among us.

I guess, what makes it difficult, is that it's a loosing battle. There are too many that take the simple route and call it psychosomatic (or imply such). And maybe it's not even being implied as far as they are concerned, but that is how it is heard.

When one goes public and leaves that door open, millions will walk in. Doesn't help at all.

[daveman]

Mellivora,

That's great about the meditation. Where it probably has the best potential as far as POIS goes is in allowing you to really tune into your body (and mind) to get to the root of things, find the right treatments etc. Better than the WAG (Wild A.. Guess).

It's amazing what you can see.

But it's usually about an 18 month training process to get that far. But well worth the effort.

And it is tough to "stay there" too, it's very similar to physical exercise in that respect. You have to keep it up.

[napkynbass]

Hi again,

I wanna now if somebody has the same feelings that i have after the "O".

The first two days is like a "hell"!! I wanna sleep, put the head in my pillow and don't talk to anyone!! Feel like a crap!

But after that, i continue with this symptoms:

 - concentration difficulties;
 - bad bad memory;
 - eyestrain, and the eyes look like take a punch;
 - dizzy and desorientation;
 - weakness;
 - talking difficulties;
 - difficulties in the conception of ideas (...)

Anyone feel the same?
Anyone who takes Niacin resolved problems like that?

I hope you can help me.

Thanks

[mellivora]

But, if they hear an interview that gives the impression that it is psychological, they'd just say 'yes, that makes sense', rather than seeking data to confirm or disprove *that* view.  That is, it is not a symmetrical situation that we're facing in seeking to overcome prejudices!

Hi Guthrie,
The asymmetry you mention is an astute observation. The weird thing is that if someone came to me describing POIS symptoms it would not be my automatic reaction to think it must be psychosomatic. I would think it definitely sounds like a reaction to a hormone or something else. That was my first reaction when I realised I was getting ill after orgasm. Perhaps I am too close to it or know too well what the symptoms feel like but I would think MOST laypeople hearing about POIS would NOT think of a psychological explanation first. Unfortunately it seems that when faced with POIS symptoms they can't explain, many doctors do seem to jump on the psychosomatic wagon. I don't mind if they suspect a psychosomatic explanation but feel they need to check other avenues. What I do mind is when they decide its psychosomatic and leave it at that without further investigation which seems to have happened to some of us. I do think there is some link between mental frame of mind and the severity of POIS symptoms. I believe my symtoms have been  worst when I've been stressed for example. The mind and body are not disconnected entities after all. That's definitely not the same as saying the cause is psychological.

Yes, Mellivora, it's killing us not knowing what POIS really is.

All I know, is when you're clear you know what it isn't.

In my case, doesn't matter if it's niacin or whatever, when you are "back" in a healthy state, you can see clearly what it's not.

Daveman you are absolutely on the money in pointing out the transient nature of POIS symptoms and the change in clarity and perspective one gets when out of POIS compared to in POIS. When I go long enough without an orgasm, I totally feel myself again.

Mellivora,

That's great about the meditation. Where it probably has the best potential as far as POIS goes is in allowing you to really tune into your body (and mind) to get to the root of things, find the right treatments etc. Better than the WAG (Wild A.. Guess).

It's amazing what you can see.

But it's usually about an 18 month training process to get that far. But well worth the effort.

And it is tough to "stay there" too, it's very similar to physical exercise in that respect. You have to keep it up.

Have you done much meditation? You are right that its tough to stay in there. Toward the end of my 4th week things were starting to get a bit tedious and repetitive (and I'm an open-minded, patient chap!). But I'm sticking with it for now.