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Messages - Hoping

Pages: 1 2 [3]
41
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 15/03/2011 00:34:13 »
Quote from: horizon on 14/03/2011 08:37:19
Thanks Hoping,
Good to have some interest from U.S doctors into POIS and Waldinger's study!
im pleased i found them now, especially since they have experince with semen allergy.

Prehaps all the US forum members should all meet there for a day of testing!

Did they say whether they can get you on a hypo-desensization program?

Also hoping I have some questions about your symptoms, same as before
Quote from: horizon on 24/02/2011 09:25:34
do you ever get 'minor'/or any POIS from...
(a)arousal alone?
(b)mastubation without ejaculation and NO fluids/leakage?
(c)or mastubation without ejaculation but SOME fluids/leakage?
(d)how do NEs compare to (b)?
thanks

I asked about the hypo-desensization, but Dr. Nguyen didn't show much interest in pursuing it. I had only shared part 1 of Dr. Waldinger's study with him, so, although he had an overview of the treatment as described in part 1, he didn't have the more in-depth description of part 2. I will be sending part 2 to him and Dr. Bewtra. I also didn't press the issue much since I don't live in Omaha and wouldn't be able to travel there for treatment any way. However, because I live in Chicago, I may contact Dr. Dimov at the University of Chicago who played a small role in the semen allergy study conducted by Dr. Bewtra and Dr.Nguyen to see if he's interested.  
To answer your questions:
do you ever get 'minor'/or any POIS from...
(a)arousal alone? No
(b)mastubation without ejaculation and NO fluids/leakage? Usually, there is some fluid so it's tough to say. Some symptoms if it's done for an extended period of time
(c)or mastubation without ejaculation but SOME fluids/leakage? Yes, but less severe--maybe 50%
(d)how do NEs compare to (b)? NEs are more like (c) with about 50-75% POIS

42
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 14/03/2011 05:08:07 »
Quote from: daveman on 14/03/2011 00:18:51
Quote from: Mer on 13/03/2011 22:08:06
Hi everyone,

I am a POIS sufferer. I think the symptoms have something to do with the decrease in breathing period and volume. I suspect that after orgasm a POIS sufferer has a slower metabolism which may relate to the symptoms.

Well, I observed myself after any type of ejaculation; I breathe about a quarter of normal situations(without symptoms). I decided to do heavy exercises like swimming and skiing which makes you put lots of effort and breath faster. By doing this I observed that my symptoms decayed in only two days rather than 6 days.
So, basically when having the symptoms I feel all of my muscles are very tired which include the diaphragm muscle as well. So that way I can`t breath with the normal rate and volume; so less oxygen gets into my blood.

What I do to reduce the symptoms are to do heavy exercises specially swimming and drink lots of liquids. An extended sleep time helps too.

I talked to a few doctors about this problem and no one agreed that the symptoms exist. I am a student and get the symptoms the night before my exams. It really decreases my performance in the exam and I don`t know how to prove this to my professors.

I always ask myself what are the things that change in body after orgasm that make me less alert, so exhausted and simply naturally forces me to do less than normal situations?  

I appreciate your comments.


Hi Mer,

Yes, there are a lot of symptoms that effect the chest area, from muscle weakness and connective tissue inflamation which effects the whole sternum to the gastric system and the esophagus with burning and spasms.

Wish I could do excersize to improve the situation, but there's just no way until after the POIS settles down.

But sleep, totally agree, especially the first 12 hrs.

Welcome. Hope we can help one way or another.



daveman, I too experience these breathing difficulties in my lungs and a weak, strained, and somewhat painful sensation in my diaphragm while in POIS

43
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 14/03/2011 05:05:02 »
Hi everyone! Good new to report. I visited Dr. Bewtra this weekend to get an allergy test. The results were positive! The experience was great. All of the testing was administered by by Dr. Nguyen, who worked on the semen allergy study with Dr. Bewtra at Creighton University. I also visited with Dr. Bewtra. Both men were fascinated by Waldinger's study. They have treated women who have semen allergy, but this was the first case of a man they had seen. They showed great interest in the disease and in our community.
I have posted pictures of the results below. I had to diminish the quality of the photos to add the arrows, etc. so I apologize. I received the p-r-i-c-k test as well as the intradermal injection tests since I wasn't entirely clear on which to ask for (Waldinger's study refers to "intracaneous injections" but calls it a p-r-i-c-k test.) Dr. Nguyen did not dilute the semen as Waldinger specified. The p-r-i-c-k tests showed a slight reaction (about 3x3mm wheal and erythema and a 5x5mm wheal and erythema). The intradermal reactions were huge. It was 25x30mm wheal and erythema and 15x30mm wheal and erythema. Waldinger says in his study that wheal and erythema less than 5mm is negative. (For those who don't know, the "wheal" is the red bump that appears and the "erythema" is the flaring out rash that surrounds the wheal. Measuring these two components gets the numbers I mentioned above). It's interesting to note that after the testing, I was hit by a bout of POIS fatigue and brain fog very quickly. Normally my POIS lingers for around 10 days. This time the symptoms hit me quick and hard. I fell into a deep sleep for an hour which helped symptoms. They didn't linger too bad.
As a treatment, Dr. Bewtra and Nguyen prescribed me prednisone (5mg tablets). This is a steroid prescribed for allergic reactions. They weren't sure of the dosage. The 5mg is low, and they told me to experiment to see what worked. They suggested I take it 4 hours before orgasm, and cautioned me about taking it daily. I need to do more research on the drug. I had an O last night. I took the 5mg medication beforehand and have taken 3 more doses since then as I feel POIS symptoms kicking in. It seems to help, but I need to experiment more. I'm also scared of the placebo effect, which I have experienced before with "cures." I hope this information is helpful. Please feel free to ask me any questions (in the forum or via PM). I can also send the pictures via email if you would like a bigger, higher quality version.

44
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 05/03/2011 17:08:15 »
Quote from: apostate801 on 05/03/2011 16:07:45
Quote from: Green on 05/03/2011 00:59:41
Quote from: apostate801 on 04/03/2011 23:46:16

That's how my POIS comes about.  It's delayed by a day or two.  Mostly anyways, one time I started shivering and had the flu at the exact moment I had the O.

I've not had fever in POIS for quite a while, but runny nose and weak vision always occurs, I also get speech issues such as stuttering and stammering whilst in POIS and my normally deep voice becomes that of a prepubescent teen lol. POIS is very strange like the gentleman in the latest POIS paper by Dr. Waldinger, I too have a photo phobia I get very depressed and my throat tightens up upon someone taking a photo of me, and it becomes difficult to breathe, must be psychosomatic, it's pretty extreme. Apart from hiding under pseudonyms and avatars, I personally, genuinely don't have any photo's of myself anywhere, I burnt all of them some time ago, I never had this problem when I was younger and before POIS.

I don't have very many pictures either and get annoyed when people take them.  I don't know why. 

Very interesting. I should clarify that "photophobia" is hypersensitivity to light, not hypersensitivity to photographs.
I've noticed that I have extreme cases of photophobia while in POIS. I can hardly open my eyes on a sunny day. It's even true on somewhat cloudy days. It's literally painful.
I believe Waldinger also mentions acousticophobia, or hypersensitivity to noise. This also happens while I'm in POIS. Hearing my cellphone beep or ring makes me want to smash it with a hammer. I get very angry very quickly, which NEVER happens while I'm out of POIS.

45
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 20/02/2011 19:18:01 »
Quote from: CCconfucius on 19/02/2011 20:56:01
Quote from: daveman on 19/02/2011 01:06:32
Quote from: CCconfucius on 19/02/2011 00:47:46
I think instead of going to private doctors we should all start contacting the head of allergy departments in university hospitals around our location to see who is willing to help




And if we had a way to pay Dr. Waldinger to speak to them on our behalf, we might make a lot more progress, safely and efficiently. Also he could benifit some form his efforts.

I'm sure his input could facilitate any interaction tremendously, and everybody wins.


Yeah that will be great he will have answers for their conclusions we dont have. But he is too busy for something like that to happen even if it was possible for us to raise enough money.

I would definitely be up for discussing this option with him. As I mentioned a few days ago, I was able to schedule an appointment with allergist Dr. Bewtra at Creighton University who has experience with semen allergy in women. I've tried to contact Dr. W to clarify a few things before my appointment to make sure I'm receiving all of the correct testing. I haven't heard from Dr. W in over a week though [:-\]

Quote from: Habibou on 19/02/2011 22:30:09
Quote from: CCconfucius on 19/02/2011 20:27:59
Quote from: daveman on 19/02/2011 17:39:11
The content % of IgE would have to be read on day 1 to 3 I imagine. Out of POIS it should return to normal, and even  during the Type IV reaction IgE could return to normal. (barring other allergies).
Or may  be even about like 12 hours after. According to paper type IV reaction occcurs  12- 14 hours.
I looked at my old test, which am sure i took 2-3 days after a big O,but still in pois. my ige,igg,igm,iga and lymphocyte subset panel all came out normal.
I am guessing it is all normal because the allergic reaction is transient so days later all the immune cell activity has stopped but the body still has to recover from all the activity.
Habibou how quickly did you do test.

I made those tests 2 hours after an O :)

This is great news! Habibou what sort of test is this? Is it a simple blood test? Did you go to an allergist or a normal physician?
I'm especially interested in being tested for Type IV but am a little unclear about how to do this. Intradermal injections? This is what I hope to explore with Dr. Bewtra.

46
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 17/02/2011 04:12:32 »
so, I have some good news. As you may recall, several weeks ago I contacted Dr. Ves Dimov at the University of Chicago due to his study:

T. Nguyen, V. Dimov, A. Bewtra. Semen allergy and other allergic disorders of intimacy [P184]. American College of Allergy, Asthma & Immunology (ACAAI) 2010 Annual Meeting. Ann Allergy Asthma Immunol., Vol 105:5, Suppl. 3, A78, Nov 2010.

I wanted to replicated Dr. Waldinger's tests and (possibly) treatment. Dr. Dimov clarified that, although he participated in the study, Dr. Bewtra and Dr. Nguyen were really the driving forces. He recommended I contact them instead. Dr. Bewtra and Dr. Nguyen are at Creighton University in Omaha, NE, USA.
I received an enthusiastic response from Dr. Bewtra and have scheduled an appointment with him in several weeks. Here's his response to me:

Dear <hoping>:
At the outset let me make it clear that I have never treated patients with
POIS. I have however treated females who had developed type I and III immune
reactions to their partner's semen. I have also desensitized a couple of
women with type I reactions to their spouse's semen.
I am very intrigued by your disease and would most definitely try to be of
any help.
Could you call my front desk at ... to schedule an appointment. It would expedite matters if you brought fresh sample of your semen with you and I will be able to perform a ***** skin test that day. That will only give me evidence for a Type I reaction. To test for a type IV reaction the test has to be read at 48 to 72 hours and that would not be possible as you will be back in Chicago. We could do that part of the test at a later date. I know that you would be precipitating your symptoms by bringing the fresh sample but hopefully, I would be able to treat it, if it is indeed an immunologic condition...
Againdra K. Bewtra


I'm speaking with him now to try to get a copy of his study. I figured others would like to hear that SOME allergists are responding to these requests. If anyone is in the Omaha, NE area, send me a PM and I may be able to share Dr. Bewtra's contact information.
I'm more intersted in the type IV testing and will stress the intradermal injections that have been discussed here.

47
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 03/02/2011 19:48:27 »
Quote from: Hoping on 26/01/2011 03:20:07
I just contacted Dr. Ves Dimov, MD who is a professor at the University of Chicago Medical Center (Chicago, IL USA). He is a respected allergist/immunologist, researcher, and educator and recently published a study entitled "Semen allergy and other allergic disorders of intimacy." I sent him a copy of Dr. Waldinger's study and asked him if it's something I could try. I'll keep you posted...

Unfortunately I never heard from Dr. Dimov, even after I sent him a follow-up email [:-\]. I'll keep at it. Maybe give him a call or just schedule an appointment.

Has anyone visited an allergist and done the allergy tests described in Dr. Waldinger's study? Is anyone receiving allergy shots? I know some have mentioned that they are planning on going, but I haven't seen anyone posting results in the forum. I know some have their doubts about Waldinger's conclusions, but I think people should seriously consider giving it a shot (no pun intended). We need more testing!

48
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 26/01/2011 03:20:07 »
I just contacted Dr. Ves Dimov, MD who is a professor at the University of Chicago Medical Center (Chicago, IL USA). He is a respected allergist/immunologist, researcher, and educator and recently published a study entitled "Semen allergy and other allergic disorders of intimacy." I sent him a copy of Dr. Waldinger's study and asked him if it's something I could try. I'll keep you posted...

49
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 15/01/2011 18:11:19 »
Quote from: gabin on 15/01/2011 15:55:40
Quote from: nick2k22 on 15/01/2011 02:50:59
A really interesting symptom, I'm not sure if anyone else has,  is tons of earwax.  When I have an O I have tons of earwax for the entire week or two during the post O hell.
What triggers earwax to be formed?
Confirm, same for me. Seems also like it affects nose vessels and causes kind of nasal congestion that in turn makes ears compressed.

I definitely agree with this nasal swelling in POIS. It hurts my entire face and seems to compress my ear canals. My head starts pounding, and it feels like (and SOUNDS like) I'm "underwater."

50
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 10/01/2011 03:02:27 »
Please contact Lindsey about the TLC interview!! I spoke with her over the phone several days ago. Unfortunately, I am not going to be able to do the interview. However, I had a very pleasant experience speaking with her and can attest to the fact that the TLC special will be done in good taste. The TLC crew will come to you and the compensation is generous. If you're AT ALL curious about the interview, I encourage you to contact her as soon as possible. This is a tremendous opportunity to tell the world our story. I hope you will all consider it.

51
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 17/12/2010 14:27:11 »
Quote from: Puscar on 17/12/2010 06:46:34
Quote from: dbfd588 on 17/12/2010 02:45:38
But POIS has brought me down to earth. I definetly appreciate the small things in life and look at friends and loved ones differently. I even hd POIS the day I graduated 12th grade. Now that sucked.


haha, I'm laughing my ass off. Out of compassion. I've been under the magic of POIS in some of the very important days of my life. My head was exploding under pois the last time I was interviewed for a job, just and example. They were firing questions at me and I was busy juggling with myself.

This happened to me during a job interview too! In retrospect it's sort of funny, but it was pretty terrifying at the time. I'm sure I looked crazy: my speech was slurred; I was having a severe anxiety attack; I couldn't answer their questions...

As for the TLC interview... It might be good to use someone who has been very affected by their POIS and who has also sought out medical unsuccessful treatment. Maybe we could put together a short "application process" for all those who are interested. I am happy to put together a short application if people want me to and can help with the review process. I haven't been as vocal in the forum as some others, so I'm not sure if people are comfortable with me being so involved in the process. Of course, I won't be offended if one of the more senior members wants to take charge. Regardless, I agree that demografx should play a key role in the final selection process.

52
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 15/12/2010 15:00:35 »
Quote from: Vandemolen3 on 15/12/2010 11:19:52
I tried Aleve (Naproxen). Maybe I have 50 % less symptoms. But I didn't have an O. in weeks. So that could affect it too. And I don't know what the effect of the sleeping pill is. Positive or negative? I will test Aleve next week again.

I have also been using Aleve (naproxen) to treat POIS symptoms over the last two or three weeks. During that time I've had two NE's and two O's (one of which I had last night). Aleve seems to significantly reduce physical symptoms (mainly muscle aches). Although it does not fight psychological symptoms (mood, anxiety, depression, brain fog), I've found that they're reduced simply due to the reduction of physical symptoms -- i.e. less physical fatigue/pain = better overall mood and improved concentration. Also, several weeks ago I increased my Wellbutrin dosage to 250mg, which affects dopamine. I am interested to see how these treatments affect my most recent O.

53
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 26/10/2010 00:38:24 »
Quote from: Puscar on 25/10/2010 15:28:41
I think it is best to find a commonality between all of us POIS victims to see how POIS might have popped up in our lives. Most of us POIS victims-- may have masturbated EXCESSIVELY at some point in our life right after which POIS started kicking in. Happened to me.

Is this true with you guys as well ?

And do many of us POIS guys also suffer from Premature ejaculation and Erectile dysfunction. (just like myself) Am I right ?

(Please note: I am not a new member to the forum. I've posted a couple of times before but wanted to change my display name)

Excessive masturbation before POIS began > Yes? (is 3 times a day "excessive")
PE after POIS began > Yes
Erectile dysfunction > No

I would be interested to see how common PE is among POIS suffers. I know it's come up before (no pun intended), but could the two conditions possibly be interrelated?

54
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 12/10/2010 06:21:34 »
Quote from: Counterpoints on 11/10/2010 20:21:49
I think for me POIS could be autoimmune.  I seem least likely to develop POIS, or I recover most quickly, when I have an orgasm when I am really tired and run down.  Also, I have been taking naltrexone, which has helped, and which I suspect to be at least a mild immunosuppressant.  And I have gotten shingles TWICE, which is very unusual for a young adult (or anyone really).

Hello everyone. I haven't posted here in several months. I have been re-reading all of the posts to try and better understand this disease.

I have had shingles twice: once when I was about 10 years old and once when I was about 21 years old. I know shingles have come up at other times throughout the forum. Is there any running theme?

55
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 12/07/2010 21:10:54 »
Quote from: Animus on 12/07/2010 06:11:07
Quote from: Defsync on 10/07/2010 14:48:33
Quote from: Animus on 07/07/2010 07:21:13
Quote from: demografx on 07/07/2010 02:57:58

Quote from: Animus on 04/07/2010 05:59:14

why does it take around 7 days to recover from POIS?


My theory - but far from fact - is that very slow sperm regeneration time (SRT) causes the long recovery.

Since TRT, my SRT is now very quick, and POIS is vastly reduced. When I'm "full" (again), I'm fine.

Anyone agree/disagree?


I agree... I think it has to do with sperm and semen regeneration too. I was looking up the time it takes to make sperm, and found that it takes about 74 days, and is being done all the time, but it takes 2-6 days for the sperm to make their final journey and mature fully... the article is here:  http://www.ehow.com/about_5503589_long-sperm-mature.html

So I found that interesting because it seems to match the time it takes to recover...

i disagree... i can get POIS symptoms without ejaculating sperm, simply from the "feel good" contraction one gets during orgasm. A person familiar with kama sutra and tantric sex practices knows how to do this. I just learned it when I was a kid "experimenting".

This is why i believe POIS (at least mine) has to do with the histamine released from the mast cells in the genitalia. my theory is that for w/e reason my brain is unable to break it down properly and in a timely manner, and it causes my POIS (which is mainly mental dysfunction 3-5 days.)
Interesting.

I agree with Defsync...
Although I have also pondered the role that sperm production plays in POIS, I have also experienced orgasm without ejaculation by flexing my PC muscles prior to climaxing. This allows you to orgasm without ejaculating. I'm not sure what "happens to" the seminal fluid in this process (if it is never released, or if it is released within the body and disposed of unnoticed through urination). I have experienced POIS symptoms following these "dry orgasms." In fact, I would say that symptoms tend to be worse if I do not ejaculate.
I don't say this to completely dismiss the idea that there is a connection between POIS and semen production. I am simply sharing my own personal experience.

info on PC muscle technique: http://www.kegelexercisesformen.com/

56
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 08/07/2010 23:18:34 »
Hello all!
This is only my second post in the forum. As I stated earlier, I am a 25-year-old male and have suffered from POIS for the past 8 years. I would say that the symptoms have become SEVERE over the last 3 years.
I realize that there are several conversations going on in the forum right now, but I just wanted to quickly report that I have recently started consuming raw garlic as a treatment for POIS. User John21 originally reported success with this method (pages 42-47 of the forum), and I know others have tried it as well.
I am happy to report that it seems to be helping with my symptoms quite a bit. I was extremely skeptical, but figured it wouldn't hurt to try. I sliced up and swallowed a clove of garlic within a half hour of O'ing two days ago. I have been consuming a clove in the morning and before bed since then. Although I was very hesitant, I O'ed again last night (busy week! [:D]) and have felt very few POIS symptoms. I have tried so many things and this is the first that has shown any promise. I strongly encourage others to try it even if you are skeptical. It is easy and inexpensive.

Method:
-Peel and slice the clove in half along the back "spine". Slice each half into at least 6 pieces (12 small pieces total). This make it easier to swallow and easier to digest.
-Take a big gulp of water (or whatever liquid you prefer) and hold it in your mouth without swallowing it. Then, tilt your head up and drop a piece or two (or three!) of garlic in your mouth and swallow it immediately like a pill. Holding a mouthful of water before putting the garlic in your mouth prevents the garlic from touching the inside of your mouth and greatly reduces any sort of garlicky taste or bad breath.
-Repeat until you have consumed the entire clove.

I have thought about purchasing garlic pills but have yet to do so. I don't want to change anything yet if it seems to be working.

*as a side note I am also currently taking a low dosage of Wellbutrin for depression and vitamin D tablets. I have been taking these for over a year without noticing much improvement in my POIS symptoms

57
New Theories / Re: Post Orgasmic Illness Syndrome (POIS)
« on: 15/06/2010 16:02:54 »
Hi everyone,
This is my first post in this forum, although I have been reading the posts here for several weeks. I want to thank everyone for contributing so much to the search for a cure (and recognition in the medical community!). I am a 25-year-old male and have suffered from POIS for many, many years. I finally connected my symptoms (depression, lack on concentration, body aches, anxiety, brain fog, mood swings, etc.) with orgasm about two years ago. The symptoms hit me about 24hrs. after ejaculation and last from 3 to 14 days. As I became more aware of the causes and effects of my symptoms I have done more investigating and have been paying closer attention to my own body's cycles. Finding this forum was a great blessing and has given me many insights into my (our) condition. Namely, it has shown me that I am not alone.

In an effort to track my symptoms and possible cures I have started keeping a chart/graph in an Excel spreadsheet. I am attaching them a screen shot of them to this post, although I had to shrink them down quite a bit so I'm not sure how well they will show up.
I have been keeping track of the following symptoms 3 times a day: time and size of orgasm (scale of 1-10), level of depression, anxiety, lack of concentration, body aches 
I have been keeping track of the following factors that may affect symptoms as well: sleep (hrs.), wellbutrin (I take once a day), Vitamin D, Indomethacin (my doctor perscribed it for post-coital headaches, which I now recognize as POIS), caffeine, alcohol, exercise, meditation.
I have not tried some of the other remedies mentioned in this forum (garlic, for example), but may work them into my routine at some point.
If anyone would like a copy of this chart/graph for your own "POIS Journal" please contact me. I would be happy to send it your way and explain how to use it. Obviously, you can tailor the symptoms and factors to your own situation. Also, if 3 times a day is excessive for you, you could do it twice or even once a day. It has been helpful for me to see charted, daily progress.

Keep up the good work everyone!

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