Poor sleeping quality due to frequent erections at night

Guest over a year ago

I am up to 40-50 mg of baclofen, and not even so effective. Any one else taking a dose so high or higher?

Can people say what dosage they are taking of baclofen and for how long and to what degree it is effective for them?

Eugene

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Guest over a year ago

A little off topic (sorry Eugene - I'm not on Baclofen myself (yet?)), but has anyone noticed changes to the shape and feel of their regular erections as a result of the SRPE? Mine is definitely "harder" than it used to be, and kind of numb on the shaft. The glans are still fine, and I can masturbate and have sex as usual, but I still worry about long term damage. My penis also seems to curve upwards more than it used to.

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Guest over a year ago

I'm the 20mg guy, but someone posted here about a month ago claiming a doctor told him he could take up to 80 mgs safely. Of course that's just anecdotal but I recall my doctor saying that when this drug is used to treat severe spasticity or muscular complaints it's taken in very high doses and tolerated. If I was considering taking a lot more Baclofen I'd ask the types of specialists that use the drug in their treatment regimes.

I do find it odd that the drug comes with no descriptors or advice about contraindications.

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Guest over a year ago

Yes, I have noticed, only during an SRPE episode, that the shaft of the erected penis has a different feel to it, especially along the bottom which can feel soft while the sides and top can still be quite hard, in fact harder than usual. who knows what is going on there?

Unfortunately, we can't do much about this except to try to minimize SRPE events per night as much as possible.

Eugene

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Guest over a year ago

Let's stay on topic:
I am up to 40-50 mg of baclofen, and not even so effective. Any one else taking a dose so high or higher? It is interesting that people say they take 20mg and that is sufficiently effective for them.

Can people say what dosage they are taking of baclofen and for how long and to what degree it is effective for them?

Eugene

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Guest over a year ago

I've been dealing with this for about half a year, age of mid 30's. Got a urologist to prescribe Baclofen. 10mg didn't quite work. 20 mg before bed has been consistently good for a few weeks so far. I'll try to remember to stop back sometime in the future for an update.

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Guest over a year ago

Hi everyone -

Once before I mentioned that I wanted to collect people's histories with this disorder and publish a scientific article in a Urological or Neurological journal,or both. My doctor in NY expressed interest. He can be the main author along with his fellow. I would collect all the case histories from those contributing to the discussion here: how old you are, how long you have had it, any precipitating conditions you can think of, its occurence at night, all the different treatments you tried and the most effective. It would all be anonymous as to the people with the disorder. It would be a way to raise awareness of the problem.

Of course it would be nice to know exactly how many people are contributing here and how this group got started initially.

Eugene

***this post is edited by moderator *** *** private phone numbers not allowed*** Please read our Terms of Use

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Guest over a year ago

Hi Eugene

I usually post as 'What We Know'.
Anyway, I wrote that I was interested in your idea, but I thought it would be a good idea if the doctor you spoke to constructed a simple questionnaire, that we could fill out and post to an email address with our unique id/username.
So, for example:

Can you recall taking any medication just before the onset of SRPE?

Otherwise he will be sifting through lots of disparate data and it may be much more difficult to spot recurring patterns of significance.

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Guest over a year ago

I usually post as "Rezz" when I remember to add my name. I'd be happy to contribute.

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Guest over a year ago

Hi Rezz and "what we know" - why don't you give me a call or text at the number belo whichever is most comfortable for you. Yesterday I set up a hotmail email account to receive info. I have made a questionnaire consisting of about 20-25 questions which I can send you. You can then fill it out at your leisure and then email it back to me. Perhaps if any follow up questions are desired we can get back to you, especially if we have your email address.

As a professor in biology I have experience publishing in journals so I know the process. But I will very probably remain anonymous on this one for obvious reasons. If we are successful in getting this published, I hope it would raise awareness to the disorder and hopefully one day lead to an effective treatment.

Eugene

***this post is edited by moderator *** *** private phone numbers not allowed*** Please read our Terms of Use

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Guest over a year ago

Hey Eugene. This is Mike O. I'll call you this week. What time works best for you? I am a long time sufferer. At least 15 years. I would be hard pressed to pinpoint exactly when it started but I have a pretty good idea. I also have some suspicions about why it happened to me. I think any questionaire should allow a user to do some free form description of when they symptoms started and what they think happened.

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Guest over a year ago

Ok Mike, thanks. Monday or Tuesday later afternoon or evening would be best for me this week. I will just need your email address so I can send you the questionnaire I have made up. I can also give you my email address I made up for this project. There is a free form part of the questionnaire that will allow people to write down anything they feel is relevant. I look forward to speaking with you! Eugene

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Guest over a year ago

I agree. A comment section somewhere would be good. I have no doubt this has already been provided for in the questionnaire. I am in Australia so I'm looking to email my questionnaire when Eugene gives us an address and the questions.

From 'What We Know'

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Guest over a year ago

Hey Eugene, it's Keith. Can you post the hotmail address so I can contact you? I would like to fill out the questionnaire as well and participate.
Thanks

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Rezz over a year ago

I notice that the phone number has been removed.

How about uploading the questionnaire to an online web hosting service, and providing the link, or making an online (password protected?) survey. I'm not too sure about the how's, but maybe someone else can shine a light on if any free solutions are available for such a thing.

Rezz

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