To the gent that was 37 taking antibiotics and getting a tetanus shot, I have had high triglycerides for years as well. Also almost the same exact age. High pressure career is also a check. I get up about the same amount of times and have to walk around or go to the bathroom. Mine began after riding a bike at the gym too long. I felt tingling in my entire genital and bottom half and the next day I found that my penis was swollen. Everything went away within three days but I was left with getting up first only one or two times a night. Now, it's every time I hit REM sleep so my goal is to avoid REM sleep as much as possible. Melatonin helps put it off for the first four hours then it's every hour that i"m up. Another thing I did was I dabbled with an herbal viagra of sorts I found on amazon. I also tried that stuff Rock Hard Weekend. Both of these really weren't necessary - just recreational use to have a fun night with my wife. I am not sure which of these issues seem to be the root cause but my gut tells me it was either the bike doing some damage to the blood vessels or the herbal stuff doing some damage to my brain (I've read the article about the brain difference with patients). My other issue seems to be digestive in nature. I've developed IBS and suffer from brain fog now almost each and every day. Hard to know if it's not sleeping or what they call SIBO. Lots of stuff going on and nothing seems to be a death sentence - just a huge annoyance and exhausting.
The thing that works best for me to sleep is when I've had a really fun night and am literally drunk as a skunk - easily get 6-7 hours sleep and I anticipate it's due to the muscle relaxing effect. That's of course a terrible way to treat this so that's only once in a blue moon that I get that decent night's sleep (and potential hangover should I push too hard). Anyone else have any good strategies that seem to help at all?
John
The thing that works best for me to sleep is when I've had a really fun night and am literally drunk as a skunk - easily get 6-7 hours sleep and I anticipate it's due to the muscle relaxing effect. That's of course a terrible way to treat this so that's only once in a blue moon that I get that decent night's sleep (and potential hangover should I push too hard). Anyone else have any good strategies that seem to help at all?
John
Really? Taking Propecia to help you? Propecia is likely what caused your problem. It kills prostate cells. Kills them. It's not a safe drug to take. I was going to call the FDA and report this condition as an adverse event as I was taking it when this first started.
Hi Eugene. Is the Baclofen still working for you? Thanks, Keith
Hi Keith, thanks for writing. About a month ago, I started on Baclofen. For the first day or so, 10mg just before bed worked and eliminated all erections at night. Good sleeping! Then, I needed to ramp up to 15mg for effectiveness. Needless to say, I am up to 40mg a night and it is not totally effective. For example, last night I took 40mg around 11pm, but was up at 3am with an erection that would not go away. I urinated to make it go away. I took 10mg more, but awoke not long after with another erection. I don't know what to say regarding baclofen. Over the course of a month, it has become less and less effective. This morning, I have again contacted Dr. van Driels in the Netherlands, whose paper on SRPE I cited in a previous post, to tell him my situation. (About a month ago he replied to me saying that he prescribes up to 60mg of baclofen taken before bed). I will tell you what he says if he writes back.
My question to everyone is: if you have tried baclofen, how long has it remained effective and what is the history of the doses you have taken?
I encourage everyone to give their approximate geographical locations, and their medical experiences trying to treat this.
Thanks, Eugene (NYC)
My question to everyone is: if you have tried baclofen, how long has it remained effective and what is the history of the doses you have taken?
I encourage everyone to give their approximate geographical locations, and their medical experiences trying to treat this.
Thanks, Eugene (NYC)
Hi Eugene,
I'm located in Ohio. I've been hesitant to try Baclofen for the reasons you cite. Any other symptoms of concern while ramping up? Some interesting things I've tried that seem to help have been melatonin (helps get me a good solid 4 hours before first - largely pushes off REM Sleep), also sometimes have had an extra hour using Phazyme (which is basically a high dose of simethicone - anti-gas). My research has found some connection to stomach issues which is absolutely related in my case. A few folks have indicated an increase in gas with this condition which I've experienced. The simethicone seems to help it move out better at night which seems to allow an erection not to get stuck. Another thing that has provided some help has been sudophedrine by basically restricting blood flow a little. Problem for me has been that that particular drug also keeps me awake so I needed to balance with something to help me sleep - was counterproductive.
I've seen several doctors with no one really taking this seriously. A sleep doctor told me what I was experiencing wasn't possible and must be simply stress. 3+ years and not one night that I can sleep through it tells me different. Urologist told me to be happy as most have the opposite issue that he sees. My family doctor has no clue what to do and says it's just a mystery.
Anyone tried reverse kegals? I know that my entire pelvic floor is tighter than it had been prior to this.
Also, does everyone have a high stress job? I know mine is a grinder day in and out. A book I read called "Headache in the Pelvis" has some interesting things related to non-bacterial prostatitis. Another reference I investigated was the Hard Flaccid group as I noticed during the day I'm not nearly as flaccid as I once was.
Sorry for the stream of conciousness post. Just hoping to help understand what got me here to maybe figure out how to get out of it (or at least deal with it better).
John
I'm located in Ohio. I've been hesitant to try Baclofen for the reasons you cite. Any other symptoms of concern while ramping up? Some interesting things I've tried that seem to help have been melatonin (helps get me a good solid 4 hours before first - largely pushes off REM Sleep), also sometimes have had an extra hour using Phazyme (which is basically a high dose of simethicone - anti-gas). My research has found some connection to stomach issues which is absolutely related in my case. A few folks have indicated an increase in gas with this condition which I've experienced. The simethicone seems to help it move out better at night which seems to allow an erection not to get stuck. Another thing that has provided some help has been sudophedrine by basically restricting blood flow a little. Problem for me has been that that particular drug also keeps me awake so I needed to balance with something to help me sleep - was counterproductive.
I've seen several doctors with no one really taking this seriously. A sleep doctor told me what I was experiencing wasn't possible and must be simply stress. 3+ years and not one night that I can sleep through it tells me different. Urologist told me to be happy as most have the opposite issue that he sees. My family doctor has no clue what to do and says it's just a mystery.
Anyone tried reverse kegals? I know that my entire pelvic floor is tighter than it had been prior to this.
Also, does everyone have a high stress job? I know mine is a grinder day in and out. A book I read called "Headache in the Pelvis" has some interesting things related to non-bacterial prostatitis. Another reference I investigated was the Hard Flaccid group as I noticed during the day I'm not nearly as flaccid as I once was.
Sorry for the stream of conciousness post. Just hoping to help understand what got me here to maybe figure out how to get out of it (or at least deal with it better).
John
This is the reply I just received from Dr. van Driel in Netherlands is "Dear sir, one can go up till 100 Mg baclofen. alcoholisme has been treated sing 200 Mg. You can combine baclofen with 10 Mg cyproteronacetate. Kind regards, Mels van Driel." He is mentioning that baclofen is also used to treat alcohol addiction and is given in doses up to 200mg for this. By the way, cyproterone acetate is not approved in the USA but is in Canada and other places.
Since I am currently using baclofen now at 50mg, I will try to ramp this up to 60mg tonight to see if it is more effective. Or, I may chose to split my doses - 30mg just before going to bed, after I wake up with an erection, I will take another 30mg. Hopefully, this will reduce the problem to only one episode per night.
In reply to John, I have not had any noticeable side effects to taking the baclofen, which I am happy about. Thanks for telling me about the melatonin and the anti-gas, perhaps it will be worth trying at some point.
Eugene
Since I am currently using baclofen now at 50mg, I will try to ramp this up to 60mg tonight to see if it is more effective. Or, I may chose to split my doses - 30mg just before going to bed, after I wake up with an erection, I will take another 30mg. Hopefully, this will reduce the problem to only one episode per night.
In reply to John, I have not had any noticeable side effects to taking the baclofen, which I am happy about. Thanks for telling me about the melatonin and the anti-gas, perhaps it will be worth trying at some point.
Eugene
Eugene,
Please keep us up to date with your findings. I'm sure it's more than just me who enjoys reading your updates in the hope that you maybe make some progress with this condition.
I'm actually considering asking for baclofen from a doctor soon, as my symptoms remain unchanged regardless of things I've tried.
Rezz
Please keep us up to date with your findings. I'm sure it's more than just me who enjoys reading your updates in the hope that you maybe make some progress with this condition.
I'm actually considering asking for baclofen from a doctor soon, as my symptoms remain unchanged regardless of things I've tried.
Rezz
I would ask your doctor about amitryptaline (evavil) as well. It's the only thing that has helped me. It deepens sleep so your threshold for waking up is higher.
Keith
Keith
Eugene here.... I have ramped up to 40mg baclofen and seems to works well, with no wakeup during the night due to erection since I started several weeks ago. As I have mentioned, I have needed to ramp up to this dosage over a series of weeks because lower dosages mitigated but did not prevent the problem. Now I seem to be ok at 40 mg for several weeks and going.
To Keith: Interesting you are taking amitryptaline... Where did you hear of this as a possible remedy for prolonged nocurnal erections? What kind of doctor prescribed it? It is a Tricyclic antidepressant, so I perhaps think it would have a mood effect and possibly some serious unwanted side effects. Have you noticed any side effects? What dosage are you taking?
Baclofen may be less invasive and a better solution IF it is effective for you.
To Keith: Interesting you are taking amitryptaline... Where did you hear of this as a possible remedy for prolonged nocurnal erections? What kind of doctor prescribed it? It is a Tricyclic antidepressant, so I perhaps think it would have a mood effect and possibly some serious unwanted side effects. Have you noticed any side effects? What dosage are you taking?
Baclofen may be less invasive and a better solution IF it is effective for you.
Hey Eugene,
My psychologist recommended I try amitryptaline. He said that it is not prescribed too much anymore because the tricyclics have basically been replaced by the SSRIs for anxiety/depression. In any event, he has some patients that are incarcerated (not me!) and he said that they all want amitryptaline prescriptions because it helps them sleep better. He theorized that my threshold for waking was too low, and therefore a drug to deepen my sleep would likely help. That was a couple years ago when I was literally waking up every hour from the erections. The amitryptaline has helped a lot, but it hasn't eliminated the problem. Seems like the severity ebbs and flows, but in general there is no doubt that it's helped. I take 75 mgs before bed. I think dosages are prescribed up to like 300 mgs for severely depressed people. The side effects are quite manageable. I don't notice much effect on my mood, but I think my mood has improved simply from sleeping better. The main side effect i have is relatively minor dry mouth, especially during the night and in the morning. Goes away within a few minutes of getting up though. Another side effect is that it is a little harder to urinate, but that is quite manageable as well.
I did try Baclofen a few years back, but I dont recall the dose and it did not help. I have also tried Terbutaline, Trazedone, Lexapro, and Gabapentin. I have also tried the homeopathic route with all the various supplements that entails. The consensus among the numerous doctors that I have seen is that this is somehow tied to an anxiety disorder, although a few think the problem could be physical or hormonal. I took Propecia for many years, and Im inclined to think that has something to do with it (although the timing does not match up at all).
Lastly I would say that Ive been getting acupuncture for the past few weeks and that seems to help a bit as well.
Let me know what you think.
Keith
My psychologist recommended I try amitryptaline. He said that it is not prescribed too much anymore because the tricyclics have basically been replaced by the SSRIs for anxiety/depression. In any event, he has some patients that are incarcerated (not me!) and he said that they all want amitryptaline prescriptions because it helps them sleep better. He theorized that my threshold for waking was too low, and therefore a drug to deepen my sleep would likely help. That was a couple years ago when I was literally waking up every hour from the erections. The amitryptaline has helped a lot, but it hasn't eliminated the problem. Seems like the severity ebbs and flows, but in general there is no doubt that it's helped. I take 75 mgs before bed. I think dosages are prescribed up to like 300 mgs for severely depressed people. The side effects are quite manageable. I don't notice much effect on my mood, but I think my mood has improved simply from sleeping better. The main side effect i have is relatively minor dry mouth, especially during the night and in the morning. Goes away within a few minutes of getting up though. Another side effect is that it is a little harder to urinate, but that is quite manageable as well.
I did try Baclofen a few years back, but I dont recall the dose and it did not help. I have also tried Terbutaline, Trazedone, Lexapro, and Gabapentin. I have also tried the homeopathic route with all the various supplements that entails. The consensus among the numerous doctors that I have seen is that this is somehow tied to an anxiety disorder, although a few think the problem could be physical or hormonal. I took Propecia for many years, and Im inclined to think that has something to do with it (although the timing does not match up at all).
Lastly I would say that Ive been getting acupuncture for the past few weeks and that seems to help a bit as well.
Let me know what you think.
Keith
Hi Keith -
Thanks for all the info. Sounds like youhave had the problem for a while. It would be interesting to know for how many years, and if it has more or less been a multiple time a night affair. For me it started about a year and a half ago. Only once a night at first and intermittent with some night not occuring at all and then again another night. I didn't worry too much. Then about a year ago it started happening more than once a night and I had to urinate and walk around to get erections to detumesce, but the key was urination. More recently, about 4 months ago the problem was 4 or 5 times a night! That is when I really started to research and gather the medical literature and track down whatever has been scientifically published on this.... And it is only 5 or 6 papers. I looked at all the medications that doctor's have thrown at this problem, and found that baclofen and clonazepam sometimes together have been found to help, and mostly baclofen. At low doses -- like 20 mg -- baclofen was not too effective, bt at 40mg I hit the sweet spot and can sleep the entire night with very little to no problems, although I can still feel that the underlying problem is still there, especially near waking time. It is such a relief.
One thing I noticed is what seems to be an increase in acid reflux, just a feeling of acid irritation in the esophagus. Perhaps this is due to the fact that Baclofen acts as a muscle relaxant and is causing my lower esophageal sphincter to become relaxed at night. This is a bit of a worry for me, a little bit of my general level of anxiety showing. :)
Yes, I feel it could be an anxiety disorder, as I know I am an anxious person, kind of overly. worrying about various things. But many many people suffer from anxiety, so much so that it is one of the most common psychological disorders. I would think that sleep related painful erections would therefore be much more widely written about and reported in the literature.
Interesting you have tried so many different medications, seems like the doctor's were trying anything that came to mind and related to anxiety or even asthma reliever. I tell you, one feels wierd going into the doctor's office explaining the problem with them never hearing of anything like this, except priapism which seems to be different.
I might say to give baclofen another try at higher doses, if you want to see if you can get even greater relief than you are getting now using amitryptaline.
By the way, how old are people out there with this problem... The onset for me was when I was 48 and I am now 49.
Eugene.
Thanks for all the info. Sounds like youhave had the problem for a while. It would be interesting to know for how many years, and if it has more or less been a multiple time a night affair. For me it started about a year and a half ago. Only once a night at first and intermittent with some night not occuring at all and then again another night. I didn't worry too much. Then about a year ago it started happening more than once a night and I had to urinate and walk around to get erections to detumesce, but the key was urination. More recently, about 4 months ago the problem was 4 or 5 times a night! That is when I really started to research and gather the medical literature and track down whatever has been scientifically published on this.... And it is only 5 or 6 papers. I looked at all the medications that doctor's have thrown at this problem, and found that baclofen and clonazepam sometimes together have been found to help, and mostly baclofen. At low doses -- like 20 mg -- baclofen was not too effective, bt at 40mg I hit the sweet spot and can sleep the entire night with very little to no problems, although I can still feel that the underlying problem is still there, especially near waking time. It is such a relief.
One thing I noticed is what seems to be an increase in acid reflux, just a feeling of acid irritation in the esophagus. Perhaps this is due to the fact that Baclofen acts as a muscle relaxant and is causing my lower esophageal sphincter to become relaxed at night. This is a bit of a worry for me, a little bit of my general level of anxiety showing. :)
Yes, I feel it could be an anxiety disorder, as I know I am an anxious person, kind of overly. worrying about various things. But many many people suffer from anxiety, so much so that it is one of the most common psychological disorders. I would think that sleep related painful erections would therefore be much more widely written about and reported in the literature.
Interesting you have tried so many different medications, seems like the doctor's were trying anything that came to mind and related to anxiety or even asthma reliever. I tell you, one feels wierd going into the doctor's office explaining the problem with them never hearing of anything like this, except priapism which seems to be different.
I might say to give baclofen another try at higher doses, if you want to see if you can get even greater relief than you are getting now using amitryptaline.
By the way, how old are people out there with this problem... The onset for me was when I was 48 and I am now 49.
Eugene.
Sorry, but I've read all the posts on this thread and spent days trying to research this issue online, and it seems there are only a handful of useful tips and future lines of investigation. Everything else is rubbish. Utter rubbish.
Facts:
Temporary relief for this nasty condition can be found through:
1) .5 mg doses of Klonopin (clonazepam). I have doubled this now
.
2) It's more effective if you mix your Klonopin with 10-40 mg of Baclofen, but no-one knows the long-term side-effects of continually upping these doses. I take .10 mgs Clonazepam + 20 mgs of Baclofen.
It works but I need 10 hrs sleep before I can function after this kind of dose.
3) The only other really effective drug is Clozapine (or something sounding like that). This is some heavy anti-psychotic which researchers do not like suggesting because of its functional hit on the body. But apparently it works!
4) There seems to be some evidence that something called neurovascular compression and lesions or damage in the hypothalamus (spelling?) are behind this. The drugs that are effective seem to confirm this as they help calm/regulate the neural signalling activity causing these life-f*****g erections.
5) And yes, sleeping on your stomach is quite effective at combatting the erections. But I'm very concerned that the signal process being stopped this way may doing something very nasty to our blood-flow as the process is re-diverted in unusual or heart-tearing ways. (eg. I wake up with heart pain when I use this method)
Would anyone like to add something new?
Facts:
Temporary relief for this nasty condition can be found through:
1) .5 mg doses of Klonopin (clonazepam). I have doubled this now
.
2) It's more effective if you mix your Klonopin with 10-40 mg of Baclofen, but no-one knows the long-term side-effects of continually upping these doses. I take .10 mgs Clonazepam + 20 mgs of Baclofen.
It works but I need 10 hrs sleep before I can function after this kind of dose.
3) The only other really effective drug is Clozapine (or something sounding like that). This is some heavy anti-psychotic which researchers do not like suggesting because of its functional hit on the body. But apparently it works!
4) There seems to be some evidence that something called neurovascular compression and lesions or damage in the hypothalamus (spelling?) are behind this. The drugs that are effective seem to confirm this as they help calm/regulate the neural signalling activity causing these life-f*****g erections.
5) And yes, sleeping on your stomach is quite effective at combatting the erections. But I'm very concerned that the signal process being stopped this way may doing something very nasty to our blood-flow as the process is re-diverted in unusual or heart-tearing ways. (eg. I wake up with heart pain when I use this method)
Would anyone like to add something new?
Ok, I've been trawling the net and read a number of research papers and have read this entire thread a few times, and I think I can summarise what's useful medication and what's known or suspected about Sleep Related Painful Erections. The rest is frankly voodoo rubbish! But I absolutely don't mind hearing something new. But please no meditation, yoga and no anti-depressant suggestions. They are garbage!! And our urologists don't know sh*t.
What we know:
1) 0.5 mgs of Klonopin (clonanzepam) and 10 mg of Baclofen will initially provide the SRPE sufferer with a good sleep. I have now, after three months, had to double that dose. To recover appropriately I now need 10 hrs sleep as the Klonopin has a dreary half-life.
Also, I reckon be wary of these taking too large a dose of Baclofen as I've found nothing that explains its possible long-term side-effects. So far it sounds like a miracle, and that's a red flag for me. Still I'm slowly increasing my dose. A man's gotta sleep!
2) The only other drug that has worked to date is Clozapine (Spelling?). However, researchers have shown reticence in advocating this anti-psychotic because of its side effects and libido-killing component.
3) And yes, sleeping on your stomach will work, but I'm a little concerned. Apparently this condition is caused by neuro-vascular compression or lesions to the Hypothalamus (?) and may be affecting the brains signalling processes to parts of the body. I just wonder if suppressing the blood-flow signals in one way (to the penis) might cause problems elsewhere? When I sleep on my stomach, I wake up with excruciation pain in my head and heart. Bizarre but true.
Anyone heard evidence-based research that explains more or points to a cure?
I have not found anything out there of significance beyond what you describe. I have access to academic research search engines and have found nothing recent or any breakthru. Even though it's been about 3 years for me and waking 3-4 times a night I worry about the doses and the drugs you describe. I've been able to get by on lengthening my sleep total, using melatonin and Tylenol at bed and then caffeine in the morning. Using a sleep tracker I find I can get about 84% sleep efficiency on a good day.
Has anyone had a brain scan done? I have read the articles regarding brain compression at hypothalamus.
John
Has anyone had a brain scan done? I have read the articles regarding brain compression at hypothalamus.
John
I 'm looking into an MRI this week, but it will probably take a month or two to get done as this issue is apparently novel and not considered urgent.
I have another chronic condition (crohns) which has seen me on numerous medications and long-term painkillers. I believe that this might have had a culminative effect on my neural pathways/system. If indeed the Hypothalamus is the culprit. I reckon there must be an additional cause to this eg. A knock on the head at some point or maybe SSRI's.
As I said earlier, the effectiveness of clonazepam and baclofen seems to confirm the brain damage theory, but we may yet find something totally different or additional like obstructive scar tissue or trauma from some earlier accident.
I have another chronic condition (crohns) which has seen me on numerous medications and long-term painkillers. I believe that this might have had a culminative effect on my neural pathways/system. If indeed the Hypothalamus is the culprit. I reckon there must be an additional cause to this eg. A knock on the head at some point or maybe SSRI's.
As I said earlier, the effectiveness of clonazepam and baclofen seems to confirm the brain damage theory, but we may yet find something totally different or additional like obstructive scar tissue or trauma from some earlier accident.