I need help... badly

[Neutral]

I really need help. Any advice or suggestions would be greatly appreciated.
I've suffered from POIS for 10 years. Only in the past year did I discover what POIS actually was. I think I have one of the worst cases I've seen on the forums. At least I hope no one out there suffers more than I do... I've never been seriously suicidal before but I've reached a point where it's constantly on my mind now and I've been looking into assisted suicide as a potential option if I can't get better. I went home for the holidays and had to confess to my mother that I'm considering this. Can you imagine what it's like telling your own mother you might not be around much longer? One of the most difficult things ever...

I don't want consider this an "option" because I'm an extremely ambitious person. I have so many goals in life, so much to live for and so much I want to do with my life. But I have to face facts, I'm just surviving right now. I'm not living. And there's no point to going on this way if I can't change it. My symptoms debilitate me to where I can't effectively do what I want to do in life. It's like having your legs amputated and wanting to be an Olympic runner..
I've suffered from POIS for a decade and pretty much been going through symptoms that whole time. 4 years ago I gave up masturbation all together and never looked back. It helped a bit but I didn't understand that orgasm from sex was still triggering something. Once I discovered POIS online I immediately abstained from orgasm all together and for the first time in 10 years I felt like who I was supposed to be. I can't even begin to describe how incredible it was. I was able to socialize finally, I could work effectively, I could read, I could feel things again, I was awake. A few weeks later I had a nocturnal emission which sent me plummeting. I set out on the road to recovery again. Eventually recovered 2 weeks later, only to experience another nocturnal emission. It's been 8 weeks since that happened and I'm still suffering symptoms and haven't been able to recover. 8 WEEKS! My girlfriend dumped me because I'm abstaining from orgasm and wasn't ready to have sex without orgasm yet. This is truly hell in my mind.

My symptoms: Depression, severe anxiety, paranoia, extreme irritability, constant brain fog, short term memory loss, headaches, sore muscles, sore lower back, difficulty communicating retaining info and socializing, severe fatigue, weakness, intense discomfort, craving for relief, intense cold can't warm up.
Current treatments: Olive leaf extract, valerian root, magnesium, ginko, vitamin b12, vitamin C, fenugreek, niacin, taurine, ashgadahwa.
I take most of those every day together. Probably pretty stupid but I'm desperate for relief. I've also been trying the AIP diet and seen no difference. Nothing at all has given me relief.

A year ago I saw an allergist who tested me. Turns out I'm allergic to many things including all sorts of different foods and grass, trees, dust, mold etc. This has lead me to believe that it's an allergic reaction. But even when I stay away from foods I know bother my stomach I still suffer symptoms. I'm at a complete loss. I don't know where my illness stems from. I've been talking to family a lot about the illness and one member is a surgeon. He has convinced everyone that I might be suffering from something else and that I'm too fixated on the idea of POIS being my issue. I would like to think I don't actually suffer from POIS but my symptoms are identical to those of many. And the few times I recovered with abstinence I felt and lived in ways I haven't in over a decade. The stress of not being able to function and not being able to address this medically has me feeling like I'm losing my mind. Like I'm going down a path of mentally ill person. It's terrifying.

 I want to try everything I can to find a solution before I consider discussing assisted suicide with a doctor. But as many of you in the USA might know, the health care system is deplorable. The last time I tried addressing some of my issues a year ago I got thrown around the system from doctor to doctor, I went broke with all the bills to where I couldn't afford to see another doctor. And at the end of the day I have nothing to show for it. They drained me of my money and I'm left worse off than when I first went seeking help.
I absolutely need medical help. But I don't know who the hell to seek out. A psychologist? Endocrinologist? Gastroenterologist? I'm fucking lost. And I doubt this pathetic Obama care will cover any of that stuff. And I can't afford private insurance it's so expensive in the USA.

I'm desperate for any help to figure out what's wrong with me. If anyone can suggest first steps of what I should do and who I should see I would greatly appreciate it. I currently live in Los Angeles California if anyone knows of anyone in the area. 

[demografx]

Neutral, all I can say is that - after many years of desperate searching - I finally put my faith in seeing an endocrinologist.

Why?

The forum's wisdom/consensus at the time (late 2000's) suggested that our symptoms reflected a hormonal imbalance.

It worked out.

For me.

But...I was very lucky.

I offer you the absolute best wishes.

Neutral: It's not worth contemplating assisted suicide! We are on the V E R G E of  finding answers to these bizarre symptoms of ours!!!

Sometimes every day shows advances.

Keep in touch here!

[Neutral]

Neutral, all I can say is that - after many years of desperate searching - I finally put my faith in seeing an endocrinologist.

Why?

The forum's wisdom/consensus at the time (late 2000's) suggested that POIS was/is a hormonal imbalance.

It worked out.

For me.

But...I was very lucky.

I offer you the absolute best wishes.

Thank you.
Are you still seeing an endocrinologist? Can you elaborate on what the process was like working with one? And what are your thoughts on the type of POIS I'm suffering from. All signs point to an allergy/immune issue but I know this can be very complicated and misleading. One thing might be affecting another. Is it possible for it all to be rooted in an imbalance of hormones?

[demografx]

I'm now seeing my GP who is carrying out and monitoring my endo's recommendations, i.e., daily testosterone patches. My free T was very low when initially tested. You can read my story at the testosterone thread here.
http://poiscenter.com/forums/index.php?topic=17.msg19176#msg19176

I am not a doctor/researcher, and I know very little about allergy or immune disorders, although I am skeptical of alleged allergy connections.

And I can't vouch for hormonal imbalance either. Not as a "universal POIS problem". It just seems to be true in my particular case.

I'm not an expert, just a lifelong POIS sufferer -- like many of us here.

The forums have helped me better understand this crazy condition of ours.

[demografx]

Neutral: It's not worth contemplating assisted suicide! We are on the V E R G E of  finding answers to these bizarre symptoms of ours!!!

Sometimes every day shows advances.

Keep in touch here!

This was edited after you responded so I just wanted to make sure you saw this.
Best,
Demo

[Quantum]

Hi Neutral,

If you have suicidal thoughts, it would be a good thing to discuss this with your primary care physician.  Maybe an antidepressant could be of help, and in addition, some members have found that fluoxetine has been good to reduce NE frequency.

On the subject of NE, it is very important to try and control every aspects that may lead you to have a NE.  You could read the entire thread at http://poiscenter.com/forums/index.php?topic=2151.msg17197#msg17197 .  Some report help with Prozac, and also with taurine.  Avoiding movies, tv programs and photos with attractive and sexy women is necessary too, as well as looking to them when passing by one in public or private  ( I know, I know, it is easier said than done, but this can be "deprogrammed", I did it, let's say, at 97% ! ).  Also, stress management is important, because high emotional stress will call your nervous system for a "release" during sleep.  I have also noticed that alcohol, having a disinhibiting effect, raise the probabilities for a NE.

I also keep by my bedside what's needed to take as soon as I realize I had a NE, it helps lower the severity and duration of the symptoms.  I always have some water with my anti-POIS products by my bedside.    If you have not found anything of help yet, take a look a this chart and see what could be tried next time to minimize the severity of your symptoms:  http://poiscenter.com/forums/index.php?topic=2338.msg19448#msg19448

For example, you could keep ibuprofen or another OTC anti-inflammatory drug by your bedside, and as soon as you realize you had a NE, take it right away, to minimize the spread of the "attack".   Than repeat the dose according to the usual dosage interval.  Since you told you have many allergies, it may be diphenhydramine/Benadryl ( an antihistamine available OTC) that you could keep by your bedside.   Only ideas, here, to help you find some relief and shorten the duration of your POIS attacks - consult your health professional to see what is the best for you.

If you can afford it, a long term psychotherapy is very helping too, to manage anxiety, stress, paranoïa, irritability, and all other emotional symptoms.  I am currently in my 9th year of psychotherapy, and it has been of great help.  Just be sure that the psychotherapist you choose is very well rated, and is obviously a compassionate and competent person.   

Hang on, Neutral !   

[demografx]

In addition to Quantum's excellent suggestions and thoughts for you, Neutral, this
Suicide Prevention Hotline has helped many people:


1-800-273-8255

[demografx]

Neutral, in Los Angeles, where you live, there is another resource that may help you in person to consider suicide prevention vs. assisted suicide. You seem scientific-minded, so: please look at both sides!

http://m.didihirsch.org

(310) 390-6612

[FloppyBanana]

Hi Neautral,

Hang in there! I've had severe POIS for nearly 30 years now. Benedryl works if you take it just after shooting. I take it along with the below.

I take Progesterone and Mytelase (perhaps you can get Mestinon or Neostigmine in the US ).

Progesterone (norethisterone) is good as you take when you need. It starts working in less than 30 mins and lasts for about 8 hours.

Now here's the tricky one.... Mytelase. I  thought this drug was going to massively change my life but then I had loads of problems with it. I got to the point where I was going to give up using it then I thought on POIS day 2 that I would give it a last try on a empty stomach and go for a long walk (2 hours). Then a few hours later POIS was totally gone. That was a truly amazing experience. It felt like 30 years of POIS was suddenly unlocked. I think it must have got deep into nerve where decades of POIS stiffness and spasms had collected.

Here's my thoughts on why you need to be careful. Taking Mytelase can actually stimulate the production of sperm even with no sexual activity. Yep, POIS with no orgasm. Put that in your POIS study!, and change this name of POIS to something less embarrassing! So from my experience don't take it until you have been up and active for at least 3 hours. Just one tablet. It works by increase choline by blocking the chemical which breaks it down. So I found that exercising (walking in my case, although would like to try 30 min jog one day) stimulates the nerve. I think this drug tells a very important story in how POIS works (well at least in my case). Also take a soya lecithin tablet when when you take this drug as it is high in choline.

I think it is likely that Dr Waldinger will be able to identify the antigen in semen which causes POIS or at least the type of immune cells which are overreacting. Study should be done by end of 2017.

Also there is a current POIS study which should finish any month now. It is likely that they will prove tVNS (electric stimulation of vagus nerve) reduces POIS symptoms. I have been trialling a device myself and I can say that is does provide some relief although only small I can say at my primitive stage of testing. The devise I have is too basic. I believe that one's tested in the current POIS study are much better and the settings can be tailored.

Taking progesterone will temporary reduce your testosterone levels. This can make me feel a bit lazy and tired but concentration remains good. I think as a result of lowering testosterone your nocturnal emissions will go. I would also recommend not eating after 9pm and do mediation before going to bed and getting up after 7 hours sleep. I would have a higher likelihood of getting an NE if I slept more than 7.5 hours. I hardly get them these days. That's something to look forward to!

For me nothing beats abstaining to get your body straight. I only shoot every 10 to 15 days. I have a managed to shake off many years of POIS crystallised muscle spasms (probably still got more hidden), and I would like to share with you and everyone that the one place that quickly tightens up in a POIS cycle is the left side of the neck. I believe this to be no small coincidence that the left ear is the target area for vagus nerve stimulation. From the left ear part of the vagus nerve messages come from the bodies internal organs including the gut (via spasm in urinary tract I believe) which is where this condition is triggered.

So this is all coming together and it's only a matter of time before a breakthrough is made. On another note, try not to get pulled down by the sexualisation of our messed up society. Sex sells and its got to a ridiculous extent. Loose sex is pimped everywhere, especially America and Europe. Have a strong mind and don't get moved by sexy looking women on the street, they're probably not worth knowing anyway! Have a path of life which you can put your heart into then the right woman could turn up. I hope that doesn't sound to father like!

Floppy Banana

[joelawerence]

@ Neutral ? I would advise you to get your testosterone levels tested (including free testosterone). There are a few cases of POIS where people having low testosterone have benefitted from increasing it. I also have very low testosterone and what has benefitted me is doing sports/exercise, taking slightly high dose Vitamin D, etc. all which are linked to increasing your testosterone. I have not taken the TRT (Testosterone Replacement therapy) route yet but some people including Demografx has benefited from that. There are pros and cons of TRT, so if taking that route you will need to do it through an endo or GP. This is only if you test and have low testosterone.

If your testosterone levels are fine, then you can try other remedies like taking niacin, fenugreek, etc to see which works for you.

Seeing your list of symptoms it starkly resembles mine, and I too have a pretty severe form of POIS. That?s why I am asking you to test your testosterone level when in POIS and see.

[Neutral]

Thanks for all the replies guys, I really appreciate it.
Just to address the suicidal thoughts: It's rarely ever been the case where I feel like I need to end my life suddenly and drastically in the moment. Although a week or two ago when I was in the peak of a horrible POIS haze I was pretty desperate to end the misery. But realistically speaking assisted suicide is something I've had on the mind a lot as of late simply because my POIS has gotten drastically worse. To better understand, I've suffered immensely for 10 years, and I simply can't do another 10. It's just not worth the pain. If I were to find a doctor I trusted and somehow got to the point where he told me I'll never find relief from these symptoms and there will never be a cure for this.. that would be it for me. And I know I can go back to my home country and consult an assisted suicide doctor that would assess me and help me. With that said, I don't want to reach that point until I've exhausted every possible option. I'll spend years going to different doctors and trying what I need to if that's what it takes, cause after all I've reached the point where I'm fighting for my life..
I hate how drastic this all sounds because I've experienced very short glimpses of my brain functioning at 100% efficiency without this illness and none of this would enter my mind in that state. I'm so driven and happy in that state, which makes it all that more devastating when you go hurling down in to a spiral of anxiety depression and confusion. It sucks so fucking bad. I don't think I would wish this on my worst enemy. But any way you all know that, most of you have experienced this too.
Regarding NE's. The very first time I abstained from orgasm all together and slowly turned into "myself" again it was incredible, not just the feeling but the fact that I thought "okay well if I just don't have any orgasms I can survive and live somewhat happily". But I no longer think that. I'm on week 9 since my last orgasm still suffering horribly with symptoms. And it doesn't seem like it's getting any better.

My goal is to go about examining this and treating it the most logical way.
I've made an appointment with a primary care physician, earliest I could get in is in a month and a half from now -__- (Woohoo obama care health insurance.....). Can anyone recommend exactly what I should tell him? I have the feeling a lot of the doctors I'm going to be seeing are not really going to take POIS seriously. They will rather look at my symptoms and use their personal diagnosis, which I am open to as well. I suppose there's a possibility I don't have POIS and it's something else. But I'm afraid no doctor will attentively look at POIS and try to work along those lines with me. Has anyone else had experience talking to a doctor about it? How do I get a doctor to take me seriously?

I suppose I will ask for a progesterone and prozac prescription since that seems to be helping a lot of people. From there I am hoping he can recommend a gastroenterologist and an endocrinologist to me, and I will see what they say about it. Now on the behavioral health side, I was planning on seeing a Psychiatrist. What do I tell him too? That I have this crazy illness where I orgasm and then my life goes to shit? I'm not sure how to explain it to a psychiatrist and I'm not even really sure what they're supposed to do. Will a psychiatrist prescribe me medication or will he recommend a psychologist or a psychotherapist to me or something?
If anyone could offer some suggestions to my plan or advice that would be amazing. 

[Quantum]

Hi Neutral,

First, about the fact that you still have symptoms after 9 weeks since your last orgasm, I think you have developped more than just POIS, now.   I really stick with Dr Waldinger criteria 4 and 5 for POIS, stating that " 4. Most of these symptoms last for about 2 to 7 days" and " 5. The symptoms disappear spontaneously."  I have no doubt that you have POIS also, but if you still have symptoms after 9 weeks, I personaly believe that you now have more than just POIS, and you have developed a chronic condition, possibly caused by years of POIS.  One of these possible secondary conditions is what I have called "depression secondary to POIS", and you are not the only case of this, many long-time POIS sufferers have described constant symptoms, like fatigue, confusion, lack of mental clarity,  and suicidal thoughts, even when they had no ejaculations for weeks. 

Of course, any release will make those symptoms worst for 2 to 7 days or even 2 weeks, and I think that this worsening IS the real POIS, and what chronically stays is something else in addition to POIS, like chronic fatigue syndrome, fibromyalgia, depression, general anxiety disorder ( GAD), or something else. 

So, I think that in order to get more help from the physicians and specialists you will meet, you have to first ask for help for this chronic state of fatigue, anxiety, brain fog, and all.  This, they will be feel at ease to help you with, in particular if you clearly mention that you have sometime suicidal thoughts, which will be acknowledge very seriously by any doctor.  In a purely strategic point of view, I would open the appointment with only this chronic, "non-POIS" aspect of your problem.  Then, just after, when the first chronic condition has been acknowledge by the doctor, you can bring the POIS subject lightly, as an acute problem you have for many years, and that you really think has caused the chronic condition/depression that you have developed.  Than, you hand him a print copy of the more recent review article of Waldinger about POIS  , found at http://tau.amegroups.com/article/view/11107/11778 ) .  For the first appointment, take into account that this doctor don't know anything about POIS, so your best bet is to seek help for your chronic condition first, and this would be in the form of an antidepressant prescription, for example, if the doctor so choose.  And, by giving him the POIS article, he will be able to read it and help you better on a further, second appointment about the specific, acute POIS problem. If he seems to have a very positive reaction to you giving him the article, and that he seems interested by this 'mysterious condition" he never heard about, you may ask for progesterone on this first appointment, but it may be harder to have a physician prescribe you a drug for a condition he does not know anything about.  In the case of an anti-depressant, the physician do not need to acknowledge or understand POIS to prescribe you one - just with your account of suicidal thoughts, anxiety, fatigue and everything, he will be secure to do so.

That's what I would do. Just see what feels right for you to do.

( see my thread  "POIS scientific articles to your physician" at http://poiscenter.com/forums/index.php?topic=2392.msg20182#msg20182 , where you have the link to this latest review article about POIS, as well as other useful comments to pounder on before an appointment with a doctor about POIS)

Good luck for your appointment, and hang in there, there are still options for you to consider, Neutral !

[FloppyBanana]

Neatral,

As far as I am aware there is no evidence of Prozoc helping POIS. One member had success with Doxepin. I think this could be partly because of its aCH blocking properties.

FB