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I think this could be caused by medications or environmental toxins. We have several guys here who have taken SSRI antidepressants and Finasteride. I also think trauma to the penis or urethra could also be a culprit. Torquing during sex or damage from a cystoscopy. We need to create another thread somewhere or create a site where we can do a more comprehensive survey. One guy here, Eugene, created one. I mailed him mine over a year ago.
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John
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I sent you an email. Ready to fill your questionnare.
Can't wait to share my story with you Eugene and all of you guys.
Take care.
JS
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Anyone from Québec? Quelqu'un d'autre du Québec?
Santiago: is there a way to talk privately, other than by replying like everybody?
This afternoon, i'll write down the détails of my story.
Take care guys.
JS
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JS, Yes definitely it will actually get us somewhere to talk one by one. Because this site is so confusing, you don’t even know who is who and random symptoms are thrown out all at once. My email is ***this post is edited by moderator *** *** posting of private e-mails is not allowed*** Please read our Terms of Use
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JS here.
Here is basically my story:
- 39 years old
- Awakenings started slowly in 2010 (7 years ago) to culminate in 2012 with 5 awakenings every single night (severe form)
- I wake up every hour (average). It goes from cycles of 20 minutes to 2 hours
- Like many others: have to urinate and walk around for about 20 minutes and, important, have to get fully awake in order to get rid of the painful/incomfortable erection and be tension-free before to get back to bed
- Like Eugene, every night I note my awakenings.
Total sleep is about 6 hours (6 x 1 hour) every night.
If one day I sleep more, next night my sleep cycles with shorten, so I'll be back to my 6 hours average.
Hypothetical causes according to litterature that relate to me:
- Low back injury few years before appearence of symptoms and surgical removal of thoracic ependymoma (just like case described in Karsenty's article). Had full MRIs at 2 different hospitals: ALL NORMAL
- Also to mention: irritable bowel syndrome and biked several years before appearence of symptoms
Investigation:
- I saw 6 urologists and 2 specialists of sleep medicine
- All relevant blood tests were normal
- Saw several psychologists (tried EMDR) and was evaluated by a psychiatrist: no psychological causes found (i'm an anxious person but it has been constant since first years of high school)
Only medication that had been helpful for me:
1 mg clonazepam daily (Klonopin/Rivotril)
Had no awakening from SRPE AT ALL for about 6 months.
Like many others in this thread, it lost its efficacy gradually so i had to increase the dosage up to 4 mg daily to get the same benefits.
By today, i got totally tolerant to the drug: useless!!
I'd still recommend to anybody that have'nt tried it but be aware that you'll probably get tolerant to it like many folks here. But, at least, could give you a break for several months...
All the drugs I've tried that had NO EFFECT AT ALL (almost 30 different drugs!!): (I was counselled by a clinician pharmacist)
- Baclofen 60 mg
- Cialis 5 mg daily for 7 months (as per Dr.Burnett's articles about recurrent priapism and Dr.Van Driel's recommandation)
- BZNs: lorazepam, oxazepam, diazepam, bromazepam
- muscle relaxants: baclofen, tizanidine, cyclobenzaprine, methocarbamol
- antidepressants: amitryptiline (Elavil), citalopram (Celexa), venlafaxine (Effexor), duloxetine (Cymbalta), mirtazapine
- bisoprolol, propanolol, clonidine, zopiclone (Imovane), diphenydramine, hydroxyzine, gabapentin, pregabalin, carbamazepine, quetiapine (Seroquel), aripiprazole (Abilify)
Only attempt i was planning:
- finasteride (Propeccia)
However, possible devastating side effects on sexual life made me hesitate (not to mention post-finasteride syndrome). Also, testimonials of many folks here who had problems with their bladder or prostate following use of finasteride + mans who think its use may be the trigger to their SRPE make me hesitate even more.
My mindset by now: try to be as happy and fonctionnal as possible with this life-changing condition as opposed to be in a fighting mode (and be obssessed of finding a medication that would alleviate or eliminate my SRPE).
Finally, the several psychotherapys I went through over the last years allowed me to enlight an important aspect of my personnal history: the absence of my father during my childhood seems to have had a great impact on my masculine identity. Through some books on this matter (Corneau, Bly, Badinter) and what seems to be a consensus from the scientific literature from the '80s, I think these SRPE may somehow be related to an absent father/father complex (negative). Nothing scientific here, just thinking out loud...
If you relate to this kind of experience with your father (absent father/father complex/bad relationship with him, don't hesitate to share your history with me.
Ok, i think that's enough for now (!).
Hope it can help somehow :)
Eugene: waiting for your answer in order to fill your questionnaire.
Would be great if most folks here could do the same in order to get as much infos as possible.
Eugene's email: ***this post is edited by moderator *** *** posting of private e-mails is not allowed*** Please read our Terms of Use
Good luck to all of you!
Take care guys.
JS from Montreal
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Anybody having other, kind of "non-normal", feelings on/in his penis/urethra during the day?
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