I have not but am booked for sleep testing in early April. I will post here if there's anything significant to report, good or bad.
To the person just above: Excellent to hear you are going for sleep testing. I look forward with great interest to hearing about your experience at the testing. I am curious to know if they ever heard of SRPE?
Please do keep us informed!
Eugene
Please do keep us informed!
Eugene
Please let us know for how long the 20mg of baclofen and 1mg (1000 mcg) of clonazepam remains effective for you. I have never tried both together, but will give it a try.
My SRPE started 2 years after I began using my CPAP. Now taking 60mg Baclofen in 3 divided doses (20-20-20). It has decreased my nightly issue for the past month to about 20% of the time, and getting about 7 hours of sleep.
Doug
Doug
Hi Doug and Others,
Where did you get Baclofen prescribed from? Doctors I meet with thow up their hands bit knowing what to do about this. No one seems willing to suggest Baclofen so I'm curious how you get your doctor or what type of doctor got you there.
Thanks!
John
Where did you get Baclofen prescribed from? Doctors I meet with thow up their hands bit knowing what to do about this. No one seems willing to suggest Baclofen so I'm curious how you get your doctor or what type of doctor got you there.
Thanks!
John
John -
No doctor suggested baclofen to me. I read about it in a published article as one of the only known medications that can help ease the issue. The citation to the article is in a previous post from me. I asked the second urologist I went to see if he would prescribe it for me. Of course, he did not hear of SRPE but was willing to prescribe it for me. It comes in 20mg tablets. That's what you should get. Start with 20mg just before bed and then if that is not effective bring it up to 30mg by snapping a pill in half. I am at 40mg now. As people have been mentioning and as I have found, the baclofen seems to be less effective after several months so you may have to increase the dosage over time. Hopefully, you will get some good night sleep.
Good luck.
Eugene
No doctor suggested baclofen to me. I read about it in a published article as one of the only known medications that can help ease the issue. The citation to the article is in a previous post from me. I asked the second urologist I went to see if he would prescribe it for me. Of course, he did not hear of SRPE but was willing to prescribe it for me. It comes in 20mg tablets. That's what you should get. Start with 20mg just before bed and then if that is not effective bring it up to 30mg by snapping a pill in half. I am at 40mg now. As people have been mentioning and as I have found, the baclofen seems to be less effective after several months so you may have to increase the dosage over time. Hopefully, you will get some good night sleep.
Good luck.
Eugene
Doug,
interesting your SRPE started while you were already using a CPAP machine. This would be in contrast to the positive results reported for two individuals in the article by Ferre in 2012. I don't really suspect I have sleep apnea so have been hesitant to go for a sleep exam. But if I were convinced at least some people have been 'cured' of SRPE by using a CPAP machine I might go.
Anyone on this site have success getting rid of SRPE on a CPAP machine? I imagine those people might have left the site. :)
Eugene
What would help to know are tricks to get the SRPE erections to dissipate as quickly as possible so we can get back to sleep as quickly as possible. Even on 40 mg baclofen I still get 1 or 2 a night, much better then 5 a night without baclofen.
My best method is urination, even if just a little. So, I head straight to the toilet bowl, sit down, and try to urinate not easy with an erection but with some strategic sitting can be done. I can then return to bed and the erection is already starting to go down. If I simply walk around or swing my legs while in a standing position it really does not go away at all, so these methods I found to be ineffective.
Eugene
My best method is urination, even if just a little. So, I head straight to the toilet bowl, sit down, and try to urinate not easy with an erection but with some strategic sitting can be done. I can then return to bed and the erection is already starting to go down. If I simply walk around or swing my legs while in a standing position it really does not go away at all, so these methods I found to be ineffective.
Eugene
I also want to add that I tried the jock strap method that was described here and while it reduced the strength of my erections, it actually resulted in me having an erection that seemed to last a lot longer just with less intensity. I found the sleep to be worse than getting up 2-3 times. I may try again as it was an interesting suggestion and it didn't choke anything off- just prevented a raging erection.
Hey Keith here. Seems like I'm the one who has been suffering from this the longest. It's been about 7 years now. I just want to reassure everyone that this isn't fatal. The less you obsess about it the better. As I've posted several times, I've gotten some relief from Amitryptaline. I take 75 mgs before bed. It doesn't eliminate the problem but makes it a lot better. I have not had to increase the dose in 2 years since I started taking it. Also, I've noticed that the less I masturbate, the better. This makes me think it's a hormonal/psychological problem and not a vascular issue. I will keep everyone posted if I have any new developments, but I've been dealing with this for 7 years and have seen many different doctors so I'm not sure there's a silver bullet out there.
I think this is a good idea. What do you do to relieve the erection when it does wake you up? For me, standing up and going to toilet is the number one choice, but I have also tried a few other things including:
- Tucking my legs up into a ball to curve my back (mixed results).
- Breathing deeply and slowly, in through my nose and out through my mouth (seems to work if done long enough).
- Willing my penis to go down, and focusing on the feeling of the muscles relaxing and how it would feel if it was going flaccid (mixed results).
- Taking Benadryl or other anti-histamine products before bed (seemingly ineffective).
- Applying pressure to the muscle between the anus and scrotum with fingers (unsure if it does anything, but the muscle is certainly "tight" at the time I wake up).
- Tucking my legs up into a ball to curve my back (mixed results).
- Breathing deeply and slowly, in through my nose and out through my mouth (seems to work if done long enough).
- Willing my penis to go down, and focusing on the feeling of the muscles relaxing and how it would feel if it was going flaccid (mixed results).
- Taking Benadryl or other anti-histamine products before bed (seemingly ineffective).
- Applying pressure to the muscle between the anus and scrotum with fingers (unsure if it does anything, but the muscle is certainly "tight" at the time I wake up).
Hi Keith, Your point is well taken about trying to not obsess too much about our SRPE issues. If one is able to mitigate the problem, as you seem to have done with amitryptaline, than this helps because you feel like at least you have a crutch. Baclofen does the same for me, but is becoming less effective over the last several months since I began taking it.
You are the first person to mention how long you have had SRPE, 7 years. I have had it for a year. So perhaps now all of us have some indication that our SRPE may be a long term issue.
Interesting you are taking amitryptaline, a tricyclic anti-depressant usually prescribed for depression, anti-anxiety or even bipolar disorder. It is very nice it works for you, yet some articles report it was not effective when tried on their patients with SRPE.
Two questions:
1. Was amitryptaline prescribed for you for a psychological issue or specifically to see if it would help with SRPE?
2. Do you have any side effects from taking it?
Eugene
You are the first person to mention how long you have had SRPE, 7 years. I have had it for a year. So perhaps now all of us have some indication that our SRPE may be a long term issue.
Interesting you are taking amitryptaline, a tricyclic anti-depressant usually prescribed for depression, anti-anxiety or even bipolar disorder. It is very nice it works for you, yet some articles report it was not effective when tried on their patients with SRPE.
Two questions:
1. Was amitryptaline prescribed for you for a psychological issue or specifically to see if it would help with SRPE?
2. Do you have any side effects from taking it?
Eugene
I'm with Eugene about the doubtful efficacy of Amitryptaline, though I haven't tried it.
The reason being I've read a few peer-reviewed articles dismissing its effectiveness. But who knows, maybe it'll prove to the go.
I posted as 'What we Know' initially and I still stand by my assertion that Clonazapam and Baclofan are the way to go. The only problem being the necessity to escalate the dosage (I now need 1mg of Clonazepam and 20 mg of Baclofen). And I can't keep escalating this without issues, surely.
Eugene mentioned collating data through a medico. I think it really is time but I don't know how to preceed with anonymity.
The reason being I've read a few peer-reviewed articles dismissing its effectiveness. But who knows, maybe it'll prove to the go.
I posted as 'What we Know' initially and I still stand by my assertion that Clonazapam and Baclofan are the way to go. The only problem being the necessity to escalate the dosage (I now need 1mg of Clonazepam and 20 mg of Baclofen). And I can't keep escalating this without issues, surely.
Eugene mentioned collating data through a medico. I think it really is time but I don't know how to preceed with anonymity.
Hey Eugene. If you scroll back a few pages I explained it all. In a nutshell, Amitryptaline deepens your sleep so your threshold for waking is a lot higher. it was prescribed by a psychiatrist I went to see for the erection problem. All the urologists I went to see said it was a psychological problem, so I went to a shrink. In any case, the Amitryptaline was prescribed explicitly to raise my threshold for waking, not for anxiety or depression. Side effects are mild and very manageable. Dry mouth and a little difficulty urinating. So much better than trying to fight off erections all night by waking around or waking myself up completely.
Most importantly regarding Amitryptaline is that you don't develop a tolerance and therefore I have not increased dosage since I started taking it 2 years ago. This drug has been around for decades and so they data on its side effects is extensive. The brand name before patent expiration was Elavil.
Keith
Most importantly regarding Amitryptaline is that you don't develop a tolerance and therefore I have not increased dosage since I started taking it 2 years ago. This drug has been around for decades and so they data on its side effects is extensive. The brand name before patent expiration was Elavil.
Keith
I have been using the support jock now for a week and I use my Fitbit to compare my sleep cycle with and without it. I wake up less with the strap when compared without it. I'm not saying it's the only thing that helps but This helps me.