Poor sleeping quality due to frequent erections at night

Did you have Crohns before or after this? I have developed IBS at the same time this came on. I have done a bit of reading on the brain/gut connection and have to believe that they could be related. The other thing I was doing at the time of developing this was taking herbal viagra. I didn't take it very long. Just a few months and then all of a sudden the night erections started. I figured it was everything working well together. Turns out, it may have had an impact in the brain well beyond the initial effects.

John

Had Crohns 25 years.
I think some event or catalyst ruptures the signaling mechanism that organises blood flow 'only' during REM sleep. Apparently the Hypothalamus does a lot of tasks like this.
But I have only read stuff on the net. I have no idea whether I'm interpreting these medical papers correctly.

I posted this a few days ago but it seems to have disappeared, so ....................

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?

The previous writer stated: "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." This is reported in one paper and is suggested based on an association (not necessarily causation) in only a single patient. I do not believe the field has any idea whether this might be the cause or not. Not nearly enough evidence and little idea of the causal connection.

still taking Baclofen at 40mg before bed for 5 weeks or so, still allows me a good night sleep but still get up once a night with a erection problem. But, this is much better then getting up 5 times a night at every REM cycle. So the problem is not totally supressed but manageable.

How is everyone else doing? Anyone try baclofen at 40mg and found it not to help?

Eugene

Hey Eugene. Keith here. You had asked how long I've had this problem. It's been about 6 years now. I'm now 45 years old, and like you I've seen a lot of doctors and tried a lot of meds. I guess what I've learned is that while I don't believe this condition will ever completely go away, it is manageable. I don't think it's going to get progressively worse to the point where it's impossible to sleep or I lose my mind. Once you accept the problem and rule out the worse case scenarios, it makes it much easier to cope. No doubt it sucks. I'd empty my bank account to find a definitive resolution. But there are many, many people with much worse chronic afflictions. So, try not to worry so much about it! I know it's hard, but ruminating about it only makes things worse.

I read the Hypothalamus theory mentioned in about three different papers although they may have been referring to the initial paper suggesting the idea. From what I recall, researchers were drawn to the theory because the few drugs that seemed effective (baclofen, clonazapam and clozapine) work in specific ways which indicate something happening with the Hypothalamus. I'm no doctor and I'm happy for anyone to provide evidence either way.
I am still on .05 clonazapam and 20mgs of baclofen. But I am starting to wake again so my dosage is going to have to increase. This is not good because I currently need 10 hrs sleep on these medications and increasing them may increase my sleeping times further.

Oh and one more thing about the Hypothalamus theory. I think researchers initially hit on the idea when a patient started exhibiting SRPE 'immediately' after some damage to the Hypothalamus. It was a while ago so I'm not completely certain about the circumstances of the patient.

I’m a 52 year old from Ohio. I’ve been dealing with SRPE for about 1 ½ years. For me, the onset seems to correlate with physical symptoms of anxiety. Started noticing anxiety about 3 years ago (thought I was having a heart attack). My family doc started me on Xanax for quick mitigation, and for long term Buspar then Lexapro then back to Buspar. Once getting past initial side effects, both meds worked for anxiety, however the SRPE led to discontinuing both meds. Doc thought the SRPE was a sexual side effect of the SSRI, and was baffled why the Buspar was causing the night time issues. Once off both meds, the SRPE continued inspiring me to research and consult with a Urologist.
As many have commented, the Urologist had never experience this issue. He also made the same comment on how guys my age usually have the opposite problem. He was however willing to research and experiment with Baclofen. Started at a night time dose of 10mg. Worked for a week, then stopped working. Went to 20mg before bed, worked for a week then stopped. At this dose I noticed at about 10 hours after taking it I would experience headaches and increased anxiety. So I started taking 20mg before bed and 10mg 12 hours after bedtime dose. Worked for two weeks then began to come back. So now I’m taking 10mg in the morning, 10mg in the afternoon and 20mg before bed with almost complete relief. All doses of the Baclofen seem to decrease the intensity of the erections. Another benefit for me is that the Baclofen has seemed to have greatly reduced my anxiety (maybe because the SRPE is reduced).
I’ll keep you posted on my progress as time passes.
Doug

Interesting, that it is beneficial for you to take Baclofen intermittently during the day. I thought it was only active for about 4-6 hours. Mind you, my doctor initially recommended something similar. I really need the .5 clonazapam as well or it's a nightmare.

Ok, Eugene here again: this is one reference I have seen referring to a compression of a region of the hypothalamus part of the brain found in a single patient.
"Sleep-related painful erection is associated with neurovascular compression of basal forebrain" in J Neurol (2002) 249:486–487.
If you type the title into google, the article is free to download as a pdf.
The authors say this region of the brain when stimulated in rats controls erections. So I suppose this could be a cause, but it is only a sample size of one and it is possible the problem is caused by different mechanisms in different people. I don't know? It would certainly be interesting to get a statistic on how common this is in the population, or if we all had our brains scanned looking for this. Though even if we knew if was due to compression, I am not sure anything can be done to remedy the compression.

It would be interesting to publish an editorial article in an urology journal. If we could collect everyone's case history, I could write an article including all of them. Then we could ask to publish them in a top tier urology journal, perhaps I can ask my doctor to be the communicating author simnce many of us may not want to put our names, including me.

Basically the paper would present all the basic info so that the doctor's become aware of a group of men with problem, and get some background to the ways the problem manifests itself in different people. Also, the ages of people, when was the onset, the nature of the progression, any treatments tried etc.

If you are interested in participating, please let me know and I will send everyone my email address for you to send me the information privately.

Eugene from NY

Sounds like a good idea Eugene. I'm in!

I'll bet this condition has affected many, many more people than the medical profession would be aware of, because it's soooo embarrassing explaining to anyone.

Many doctors immediately assume some kind of anxiety or sleep apnea. They send you off to a urologist (on my case a 65 year old) and they haven't got a clue. Then they get you to undertake completely erroneous tests.

Ask your doctor for a list of standardised questions. I'm sure he'll want detailed medical histories, injuries, medications (for how long), any significant drug and alcohol use. Maybe even recurring family illnesses.

The more I think about this the more I realise that this will have to be done totally anonymously, or am I missing something?

My theory is that SSRIs use may trigger this condition in otherwise healthy me. Especially at discontinuation. There is a syndrome called PGAD persistent genital arousal disorder that is actually worse than SRPE that is believed to be linked to SSRIS discontinuation. I think Finasteride may be another culprit. There is definitely damage or alterations to the nervous system causing this problem.

Hi,
Can you send a link to the article discussing the evidence for a link between PGAD and SSRI's. It sounds very interesting.

I will have to search on the web but I think it's pretty well understood that PGAD or PGAD like symptoms can develop while on, starting, or discontinuing certain SSRS medications. I'm sure drug manufacturers would have something to say about that but that's only natural. It's not in their own interests to acknowledge a black swan/horrific type of side effect like that one.

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