Mike O.
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Thanks,
Mike O.
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Thanks,
Mike O.
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Mike O.
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All of the ways to relieve symptoms/discomfort mentioned seem to apply to me as well -- getting up to urinate (even when I don't need to pee much, it feels like I do) always works, passing gas sometimes does, mental focus to relax the muscles in the area can give momentary relief and occasionally/partially works (most often the first or second time in the night this occurs, but not the 3rd or beyond), sometimes positioning in bed (I'm going to try some of the positions recommended in recent posts). I am also cutting out all caffeine and carbonated beverages to see if I notice improvement.
Generally speaking, it seems to occur for me--and for some of the earlier posters as well-- around the 2-3am hour, after about 4-6 hours of sleep. After that it typically occurs 2-3 times. NyQuil works for me to sleep through it, but I only occasionally use it. (I'm going to try the nighttime Alive as suggested in a previous post.) I have no desire to use any other medicines mentioned, especially since I can tie this to an injury and not a spine/back issue or previous medication side effect.
Because mine was initiated by trauma and I now have this blog and some related journal articles, I'm likely going to seek out an andrologist at a top research hospital (e.g. Mayo, Cleveland, JH, etc.) for a next consultation. I will take information from some of the articles and this posting board.
Thanks to all that have shared.
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As I write my first post, it's 5:39am and I've just had the worst bout of sleep related painful erections (SRPE) last night. I must have been up 7-8 times, every half hour at some points. Its hell and I feel the pain of each and every one of you. Quick tip: Place an ice pack where your scrotum meets your perneum (where your sack and your taint meet). It helps the pain go away fairly quickly.
It's been happening since August. Today is November 7 so I'm not years into this but this is a serious quality of life issue. I can't function during the day because of this. Not to mention my job is safety sensitive. I tried to get my urologist to sign off of medical leave paperwork but "this doesn't qualify". God forbid a doctor should write more than he needs to!
My primary doctor has no experience with this so he sent me to a urologist. The urologist said he's treated sickle cell patients experiencing priapism with Cialis.
First he did just that. He put me on once-a-day Cialis, which seemed counterproductive but he said it'll help control the erections. Hard when I want to be, soft when I don't. Took it for 2 weeks. Did nothing.
Next he tried Valium before bed. There seem to be some nights that it reduces my episodes, but for the most part it's unsuccessful (took 10mg last night and here I am back in hell).
Now, last week he sent me for a pelvic MRI with and without contrast. It was an hour and a half, in a tube, hooked up to an IV with "on-hold music" blasting in my ears. Not fun. No results yet but my next appointment is Friday.
I have noticed that this is directly related to REM sleep. Doesn't happen during naps and usually not until after 2-3 hours of sleep. I've noticed that if I go to bed drunk, it doesn't happen. This is not because alcohol relaxes you. It's because alcohol prohibits you from entering R.E.M. sleep. I've read an article that states that this can be a neurological issue. I will post the link after this post.
I really hope that by relaying an and all information we have that we can collectively work to solve this problem. People laugh at first when I tell them about this but this is a serious quality of life problem. Can also cause future ED.
After some research, I finally see that I'm not alone in this and neither are you. Please... if you have any information, do not hesitate to share. Many men are going through the same thing and no one knows how to fix it.
I hope to get some replies soon. Best wishes to all.
MJ from NJ
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DH from OH
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MJ from NJ
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AF from TX
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Has anybody heard anything from Eugene, who was sending out a questionnaire about SRPE back in May / June?
I've emailed him but with no success.
for info, I've been prescribed a testosterone blocker by my urologist: cyproterone acetate. i'm currently taking 25mg per night, plus 20 mg Baclofen. I DON'T recommend cyproterone - i was taking higher doses in the past and got loads of nasty side effects.
I've been to a sleep therapist who diagnosed i also have 'periodic limb movement disorder' She has studied several sufferers of srpe, and they ALL have the limb movement disorder. She has suggested trying Pramipexole, which can successfully treat the limb movement, to check if it also helps treat srpe
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I've noticed that when my rectum becomes full, usually 4-6 hours after going to sleep, that's when the erections start. Surmising that the feces in the rectum press against the prostate, causing the erections. And because of gravity, there's more pressure from the feces against the prostate when lying supine (on the back) than when lying prone (on the stomach).
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